One Week Update: August 9

I know that I’ve been MIA for a week or so. I have had a couple of migraines, which I still get, despite my surgeries. Migraines are separate from Chiari, despite the fact that I get both types of headache concurrently, often. In case anyone is curious, my migraines, as a separate disorder, have been pretty well controlled lately, by the following regiment:

 

Preventative:

  • Amivog (this is one of the newer, monthly injectable medications)

  • Topamax (300 mg - yes, this is a big dose - mine is broken up into am/pm doses)

  • Botox (every 3 months following the protocol, plus in my jaw)

 

Abortive:

  • Imitrex (100 mg dose)

  • Frovatriptan (not WITH the Imitrex, duh - to every pharmacist out there who tells me, and will tell me)

  • Fiorcet (not the one with Codeine)

  • Zofran, when needed

 

As for the Amivog, it comes in two doses, a small and large. My neurologist just switched me to the larger dose, because she wants me to ultimately taper down on the Topamax. If the Amivog is successful, it has fewer side effects, and she wants to rely more heavily on that as a preventative. However, Tricare is not as reliable at delivering that medication, so I have to consider that. For example, I wasn’t able to get it this month, because they randomly switched pharmacies from which they will allow us to get it, meaning when I went to pick it up at Walgreen’s, from which I should have had no co-pay, it was, suddenly, $585. Ummm…no.

As for the Topamax; it’s a drug that’s been on the market for years. They renewed their patent recently by making an XR version called Trokendi. Many people don’t react well to either one. It has a long adjustment period. I’ve been on it since I was in my 20’s, at varying doses, sometimes as high as 800 mg! I’m not saying that was a great doctor. I’ve tried to taper down, or off before, and it seems like anytime I get below the 300 mg threshold, all hell breaks loose. We shall see, if when the Amivog is in place, the same holds true.

Anyway, I’m always curious what other patients have in their toolbox. That’s not all my daily meds, of course, just those for migraine. I’m actually not on that many meds any more. I’ve gotten them pretty weened down, and I’m glad for that. If only I could take nothing. Ah what a dream!

 

One of my favorite images of me and Collin. He’s always comforted me when I have been sick in bed with headaches. Here he is, as a toddler, crawling into bed with me, being his goofy self. it’s such a “Collin” pic, for anyone who knows him. For those who don’t, it’s just a goofy kid, and an adorable shot. He’s always a comfort, and as he’s gotten older, a sweet, caring force. He’s always there when I need him.   Notice the red spot on my temple…I often get mild frostbite on my temples when i have a particularly bed headache, from direct contact with ice, for extended periods on end. It heals, but, I usually lose a few layers of skin first.

One of my favorite images of me and Collin. He’s always comforted me when I have been sick in bed with headaches. Here he is, as a toddler, crawling into bed with me, being his goofy self. it’s such a “Collin” pic, for anyone who knows him. For those who don’t, it’s just a goofy kid, and an adorable shot. He’s always a comfort, and as he’s gotten older, a sweet, caring force. He’s always there when I need him.

Notice the red spot on my temple…I often get mild frostbite on my temples when i have a particularly bed headache, from direct contact with ice, for extended periods on end. It heals, but, I usually lose a few layers of skin first.

So, I know I’ve been absentee, but I thought I’d throw a random update your way about what’s been happening around here, and get you up to speed on Rachel-ville, in no particular order:

 

Registration for Fall Classes


I had to register for the Fall Semester. I hate registering when you are at the bottom of the heap for students. It means you register last, as you watch classes fill up, until your appointed time. Thankfully, I got the classes I wanted. One of those classes is, wait for it, “Creative Writing: The Young Adult Novel.” I have no clue what I’m going to write about. But, not to fear, I dreamt that I had a great idea, last night. And, furthermore, I dreamt that great idea included a grizzly bear. Surely, I’ll be all set. As you can tell, I’m even nervous about this in my subconscious.

One Halloween, Collin went dressed as a monkey (note the banana sewn to his hand). Every house we went trick or treating to asked him to growl, because they thought he was a bear. It was super annoying. Plus, he had no idea what they were talking about. He had a fucking banana, and a long. monkey tail. Maybe my idea had something to do with this costume?

One Halloween, Collin went dressed as a monkey (note the banana sewn to his hand). Every house we went trick or treating to asked him to growl, because they thought he was a bear. It was super annoying. Plus, he had no idea what they were talking about. He had a fucking banana, and a long. monkey tail. Maybe my idea had something to do with this costume?

Speaking of Dreams

For the last three, count them, three, nights in a row, I have also had nightmares that were about my parents. Nothing says healthy and healed from childhood trauma more than your parents not only showing up in your nightmares, but causing you to wake up crying, right?

 

Manicures

I have started, in my 40s, these past few weeks, to get regular manicures. Before this, the only manicure I’d ever gotten, was for my wedding. I know, weird. I’m loving it! I had no idea how pretty my hands could look! Here’s my problems though: how do you talk to the women doing your nails? They are always talking to one another in what I think is Korean. I feel so awkward interrupting them, but I also feel awkward not talking to them. Well, I feel more awkward than usual. The girl I had last week didn’t do a great job. When I show up this week, if they put me with her, can I ask for a different girl, without seeming like a bitch? I’ve always gone by the adage that, in service industries, tip, and tip well; if I keep tipping well, will they like waiting on me, remember me, and do a good job for me?


Peri-menopause

Ugh, speaking of 40s. My periods have been acting wonky for a few months now. This month, it appears that it may not show up at all. NO, I’m NOT pregnant. For the past six weeks, sex has been the farthest thing from my mind, as my leg was so painful, I had considered amputating it. Plus, even if Bryon had caught me in an amorous moment, he’s had a vasectomy; and, he sent his little swimmers back for the six-week check afterward, all deadzo. Alas, I’m well over a week late. I’m perfectly okay sliding into that stage in life. I’ve been begging for a hysterectomy for years. I do not understand why insurance and doctors make this such a difficult procedure for women to get. I understand that it’s major surgery; but, the reasoning is always that, as women, we might change our minds regarding our fertility. Collin’s twelve; I’ve never doubted my decision for only one…in twelve years.

Hot flashes anyone? Just me? Okay.

Hot flashes anyone? Just me? Okay.

Kids…and Lice

Speaking of kids, they bring home lice. Collin was infested with lice by the time we figured out that’s what it was. I could see bugs crawling in and out of his hair, and I was picking them out, regularly, for days! Don’t judge my stupidity! I swear, I thought they were gnats. I kept looking at them, and thinking they had wings. I was sure they weren’t lice. I kept Googling what kind of bugs could infest your hair that weren’t lice. Try that search sometime. Know what the answer is? Lice. It was frustrating. Finally, we shaved his head to a buzz cut, because we were accusing him of just not washing well, and that’s why he kept getting these darn bugs. He ran his hand over his freshly cut head, and tons of bugs fell out. It was…gross. They were definitely lice. It was very obvious at that point what they looked like. That’s when the bells went off. For some reason, they looked different to me, at that point. Yes, I had it too. Yes, it was everywhere. Yes, I’m an idiot. No, I have no idea what I was thinking. I’d have sworn they had wings, staked my life on it. I believe the lice are all gone now. Thankfully, we have a very clean house, and it didn’t take much to disinfect it!

The worst part, to be honest, is that my hair is now past my belly button. Thanks to an irrational fear of cutting it. Getting that damn nit comb through that was a nightmare!

 

---But man-alive did it feel disgusting for a while there!

These are OUR personal lice. These came from Collin’s head and he took a pic while looking at them through his microscope. They are pretty gross little fellas, aren’t they?

These are OUR personal lice. These came from Collin’s head and he took a pic while looking at them through his microscope. They are pretty gross little fellas, aren’t they?

 

Kids…and Middle School

Is it any wonder that my little one was looking forward to riding Peter Pan’s Flight at Disneyland? This costume came with a little dagger (wait, no, it cost extra - but, we had it). The dagger made a little “shwing” noise. He carried it around, stuffed in his pants, for three years. He was obsessed with it!

Is it any wonder that my little one was looking forward to riding Peter Pan’s Flight at Disneyland? This costume came with a little dagger (wait, no, it cost extra - but, we had it). The dagger made a little “shwing” noise. He carried it around, stuffed in his pants, for three years. He was obsessed with it!

Collin promised me when he was very small, that he would stop growing once he was tall enough to ride the Peter Pan ride at Disneyland. He was quite sincere when he made the promise, as if he’d intended to keep it. That’s how little he was, young enough to believe his own words. I constantly remind him that he broke his promise about growing up. Now that he has clearly broken it, and he keeps getting older, and bigger, I sometimes wish he’d get on with the whole growing up bit, and reach 18, so he’d get through puberty already, because it’s making us crazy. Of course, I know that the days are long, but the years are short, and I’ll miss him when he’s out of here, making memories somewhere else, but someone, anyone, come tell me how to make my son care about schoolwork? His middle school orientation is next week. I can’t believe it. A few days ago, he was starting kindergarten, and now, he’s going to have a locker, be awkward, and go to dances. Time marches on.

i couldn’t resist this other pic of him at Disneyland from roughly the same age. Look at that little face. Pure joy. I miss those smiles that take up his whole face. Somewhere around 10, it’s like those smiles disappear and regular smiles come on, the ones that our normal faces have. I’m sure I’m as happy as can be in this picture, seeing glee on my son’s face, and i don’t look like him. I miss his full-smile face.

i couldn’t resist this other pic of him at Disneyland from roughly the same age. Look at that little face. Pure joy. I miss those smiles that take up his whole face. Somewhere around 10, it’s like those smiles disappear and regular smiles come on, the ones that our normal faces have. I’m sure I’m as happy as can be in this picture, seeing glee on my son’s face, and i don’t look like him. I miss his full-smile face.

Time Does March On

And on, and on, and on. I have physical therapy for my knee for another full YEAR. Can you imagine that. A year! Sure, they didn’t want to see me for over a week now, due to the whole crawling insects in my hair thing. They were even willing to waive the cancellation fees because they were the ones who were refusing to see me. I was willing to come in, but they didn’t want an infestation; something about all the pillows, sheets, towels and blankets they have there. I get it, I really do. But, I have a full year of sessions to make up for missing this last week. A few weeks ago, I had a session that made me cry, literal tears, all over the place. So, I’m not looking forward to my return, after such an absence. I’m sure it will suck, terribly. I have two therapists: one, whose personality I love, but who is cruel to my knee; one who’s gentle, but who has the personality of a wet blanket. It’s a great combination.

Time marches on, indeed…my baby 10 years ago. Can you tell that I’m feeling nostalgic this week, as my baby prepares to start middle school?

Time marches on, indeed…my baby 10 years ago. Can you tell that I’m feeling nostalgic this week, as my baby prepares to start middle school?

My Knee

Which leads me to an update on my knee. I can now bend it greater than 90-degrees. This is pretty good progress. I am “allowed” to go without my brace, but I “should” put it on if it feels “funny,” or “weak.” How’s that for vague?” I’m allowed to start walking for exercise, something I tried on our treadmill this morning, and I could only handle for about ten minutes before my knee said, “well, that’s enough of that, little missy!” My knee is still very delicate; I tried vacuuming the other day, and I had to sit, for three straight days afterward, doing nothing but icing it. Apparently, all the pivoting involved with vacuuming was something I was not prepared for. I’m going to see Billy Idol/Bryon Adams next week (I know, be jealous); the concert venue has about nineteen billion stairs, so I’m a little nervous how my knee (braced or not) is going to handle that little doozie! Plus, I mean, how does one not dance?

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I think that’s about all I can update you on…wait, except that I got an A as my final grade in my class. I am so proud of that! I was so nervous when I enrolled into this program. I didn’t trust my brain. What if it couldn’t handle thinking at that level again, or anymore. Academia is one thing. Harvard is quite another. I was terrified. I almost backed out. I’m so glad I stuck with the idea and proved to myself that my twice-operated brain could handle it. Sure, I have to proofread my stuff a lot more heavily, because I spell phonetically when I type, Sure, I have to take a lot more notes than I used to. I sometimes read a little more slowly. But damnit if I don’t love it as much as I used to. I’m reading academic articles again, for fun, academic texts, and more. I love school. I love learning, and I love what I’m doing. I feel alive again, and I’m so glad I took the risk.

P.S. Thanks for strolling down memory lane with me, enjoying all the pics of my boy when he was small and perfect. He’s still perfect now, he’s just not as squishy-cheeked and cherubic.

Gilroy

To understand why I feel touched by yesterday’s events at Gilroy, other than as a concerned and outraged citizen, as we all should, I have to take you back to a young, stars-in-their-eyes couple, before Collin, back when Bryon and I were dating.

 

Bryon and I had our first date right before I left Edwards, where we were stationed at together, to go home for Christmas for the first time, since I’d left home to join the Air Force. I had been excited about going home and seeing my family, as it’d been a tough first year away. I’d been through Officer’s Training School, the worlds’ weirdest first marriage (a story for another time), and adjusting to being both single, and far from home, for the first time. I’d still not come to terms with my abuse, and I was still a little tethered to my home, not really ready to be away, feeling like that was my safe spot. It wasn’t.

 

Anyway, Bryon and I went on our first date, which was sufficiently awkward and beautiful to know that it’s the date you tell your children about as this was how you knew your father was “the one.” He took me to Round Table Pizza, because that’s where his family always went for Christmas Eve, and since it was getting close to the Christmas Eve, he thought he’d share a bit of his traditional self with me. Awwww.

 

Then, because the date was going so well, he took me back to his apartment, which was right around the block.

 

Get your mind out of the gutter, people.

 

I got to experience the special smell that was Bryon’s single-man life. I only went back to that apartment ONE more time. That’s how special the smell was. He claims it was because of his neighbors. I am not so sure about that one. We can agree to disagree. I’ve smelled wafts of it in our shared lives together since, in days when he’s done too much yardwork; or when he doesn’t put enough foot powder in his shoes; or when he’s had too much to wine the day before, and we should put an out of order sign on the bathroom door. Men need women. That’s all I will say. Sure, there was a curry undertone, but the special smell that was unique to Bryon’s place. That’s all him.

 

Anyway, in those few treasured hours together, I saw (and broke) the balsa wood bridge he made for a science fair (he thought it could support my weight - It did not). He showed me the photo scrapbook (not album) he made of his eighth grade (I think??) trip to England with his mother. In other words, he put on all his best moves, and I was in it for the long haul.

 

What can I say, I’m easily caught by geeky guys with no moves?

 

By the time he walked me to my car, I was smitten. His rushed and nervous kiss over my car door was all I needed to fall in love with him. We spent the entire holiday break either on the phone (yes youngsters, us oldsters still talked on the phone), or texting. I’d been casually dating another man at the time, one who sent me poetic texts over break like, “Let the moon light your dreams tonight, and the stars be your guides.” I still think I went with the right choice though.

 

He agreed to pick me up at the airport, when I arrived back from Michigan. It was no easy feat, as I had a dog with me. A dog! Who picks up a girl from the airport, with a dog, a large dog at that, that he’s only had one date with? The man of your dreams, that’s who.

 

Still, while we were standing at the baggage carousel, waiting for both my bags, and the “large cargo” that was my dog, I was overcome by a smell. It wasn’t just a mild smell, it was a horrible, try to avoid it smell. It was the kind of smell that you think, “Is that me? God, I hope that isn’t me!” You move around, hoping it’s the person next to you, so you can get away from it. It’s not, so you move some more. It’s following you. You can’t get away from it.

 

A horrible thought occurred to me: what if it’s Bryon? What if this man of my dreams, that I’ve fallen head-over-heels for, is the source of this horrendous smell, a smell that is permeating the air of the whole baggage carousel area? Can I go on?

 

I gave him the benefit of the doubt and assumed someone with terrible, and I mean terrible B.O. must’ve wafted through before us, and left it behind. If anyone old enough has ever seen the episode of Seinfeld where the valet with bad B.O. ruins his car, you’ll know what I mean. However, when we got in his truck to drive home, I was distressed to find that the smell followed us.

 

It was him.

 

I had a terrible choice. Recognize that this man that I’d been dreaming of for the last ten days smelled like death today, and live with it; or, find a way out. I lived with it. For months, I decided it was just a one-off and until we got to know one another better, I didn’t mention it, until….

 

He had garlic fries at a game. And, I mean GARLIC fries.

 

It wasn’t the breath, which, don’t get me wrong, was reason enough to be an issue. It was what happened to garlic in his body. Garlic is fabulous, wonderful and amazing. In reasonable, even profound quantities, it is fine in almost everyone. It’s even fine in Bryon. But, when he goes overboard, he smells like rotting corpse. The smell leeches from his pores for days, and not just a little bit, as if a green could of death is following him with green skulls and cross-bones following him.

 

This leads me to Gilroy and the garlic festival.

 

Bryon is from Central California, and for a time, both of his parents lived in Northern California, so we’d pass Gilroy every time we went to visit them. The first time we passed Gilroy, we had a long, hilarious talk about going to Gilroy’s Garlic festival, and how we would have to ration his tasty treats, or I’d have to leave him there to sleep it off, alone.

 

It was a long drive from Edwards, and then, as we grew, got married, and had Collin, from Los Angeles, to Central/Northern California. So, Gilroy was always a conversation point along the way. We always talked about Gilroy’s garlic. We’d point it out to Collin. We’d laugh about Daddy’s smell. We’d always talk about timing a visit with the festival, but never managed it.

 

We never stopped in Gilroy, not even to pee. We never went to the festival, but the town and the festival were as much a part of our family trips as the trip itself, sort of like passing the giant windmill in Solvang (where we have been). I’m heartbroken that anyone would desecrate a day of family fun in a place like Gilroy.

 

That’s not to say I am not heartbroken when anyone desecrates anyplace with gun violence. I am done with gun violence in America. Done. There is no place for this any longer. Yesterday, a six-year-old boy went to a festival with his parents, probably with some pocket-money to buy a souvenir, probably excited to get a treat like popcorn; instead, he was killed.

 

This is not what we should be about when we talk about protecting our rights. A child’s right to safety, a family’s right to safety, should be important, too. And, don’t tell me open carry is the answer. Violence begets violence. It’s time for a real change.

 

I may be naïve, and certainly if I say no more guns, someone will fire back at me and say, “criminals will still have them, so I want mine.” Eh. It ends slowly. But, it ends. It has to end. This cannot go on. We are a world leader, but it’s sad to be the world leader in this. This is shameful and devastating.

Bidet to You, Too!

So, I wrote this whole post about how I’m almost done with my first course at Harvard, and I think I’m getting an A. I am so excited, proud and just so darn yay-ing over here, that the post was boring. I can hardly believe it’s me when I think about it too much. Bryon keeps telling me it’s obvious. I’m like, “umm, is it?”

 

Well, the post wasn’t boring to me. But, nonetheless. I’m sad for the class to be over, and a bit nervous for Fall semester because I’ll have two classes, and I don’t think I can take my first professor again. She conflicts with another class I have to take, of which there is only one offering. She is the most patient, energetic, kind and knowledgeable person I’ve met in a long time. I had hesitations going into this, and I’m glad I took the risk. The decision was made on a whim one day, but I’m so glad that I didn’t back out.

Not the greatest cat pic of the week, but I think it speaks to the gist of the week…Rachel’s school stuff spread all over the bed, while I work, Bear ignoring it and trying to get a treat, Homer watching in the background (judgmentally).

Not the greatest cat pic of the week, but I think it speaks to the gist of the week…Rachel’s school stuff spread all over the bed, while I work, Bear ignoring it and trying to get a treat, Homer watching in the background (judgmentally).

 

The only good thing about this semester ending, is that you get to be rid of that one student in every class that annoys you. The one who seems to have stumbled their way into the course, but isn’t sure how they got there. Somehow, they manage to continuously show up, driving everyone else crazy with questions totally out of left field, usually syllabus-related, in the middle of lectures. Because it’s an online course, I know I was particularly grateful that, by week four she’d figured out how to use the mute/unmute button when talk. It was a blessing to us all, because someone in her household was fond of using the blender, far more often than is normal for a three-hour period.

 

I’m sure she’s a lovely person in her everyday life. I’m just not sure I’ll miss her in this environment. It’s funny how different environments color your perception of people, isn’t it? Honestly, my favorite part about the online component of this class, is that this particular person has her camera set up in her dining room, and she has all her papers, and miscellaneous books (of which there aren’t any required for this course) organized in piles all over her dining room table, and chairs. So, every time someone talks, or the professor talks, she gets up (from her rocking chair!) walks over to the table, and digs through papers, finds something (I have no idea what!) and is satisfied. Hey, whatever works though, right? To be a fly in her mind, for just a few minutes would be ever-so-fascinating. Truthfully, to be a fly in anyone’s mind would be fascinating.

 

Or…scary. Flies are always getting smacked.

 

Look at me, I said I wasn’t going to keep writing about my class, and then I went and did it again for another full page. Jeesh, I must need to get some of it out! There. I did. When it’s all over with, I’ll give you all the full low-down, and my grade (hopefully, an A, fingers crossed).


See that above….that’s the back to business line!


What I thought about telling you about instead, today, was that we made a weird investment a few weeks ago.

 

Drumroll.

 

A bidet attachment! Bet you didn’t see that coming!  

 

I think it was the third or fourth day after my surgery, and I was whimpering and crying, in pure agony and exhaustion. Bryon didn’t know what to do. When I’m in pure pain, he’s probably at his most adorable, because he wants to help, so badly, but simply can’t. He looks like how I imagine Henny Penny must look, when the sky is falling. He gets a look in his eyes that just screams, “I’ll do ANYTHING! Just tell me!”

 

If that’s not love, I don’t know what is. I fall more in love with him every day, but on those days, it’s double so. He reminds me that he’s always going to be there when it’s tough; but not just there, there. His whole heart is breaking with mine. It’s truly something to have that in your corner, in a marriage.

 

So, as I’m whimpering in the bathroom, because it’s so hard to go to the bathroom with your foot up, and to wipe effectively; I know, it’s a lot to imagine, but bear with me; he says,

“I know I can’t take your pain, but what can I do. I’ll do anything.”

 

Swoon ladies, he’s mine.

 

I feel like this is getting a little too sappy with love-bug-bites about my husband. So, how about I tell you something less than charming about him to even it out? He has to sleep with a massive two-piece mouth-guard, specially fitted to his mouth from the doctor, to keep his jaw in-line to help keep him from snoring. Note that I said help, not keep him from snoring. He still snores. He also uses the snore strips, and lots of swift kicks in the shin from his wife. Either way, it’s not super sexy.

 

I said, “You know what I want? I want a bidet. It’s too hard to wipe right now and get everything.” Gross, I know. It’s not romantic, but when you have been together this long, and he’s sitting on the floor, holding my leg on his shoulder while I poop, the romance is that he’s holding my leg while I poop.

 

Oh! Didn’t I mention, because the stool kind of hurt my ankle, when he could, he’d rush into the bathroom, and hold my foot on his shoulder, regardless of what number I was doing. True love, folks. True love. Devotion, and true love. He’d sit there, even in the middle of the night, as he fell asleep against the wall, while I went to the bathroom, with my leg propped on his shoulder.

 

So, off he went to Home Depot to find a bidet attachment for our toilet. AND, a new toilet seat! When we moved into our house, our master bathroom (which is hideous!) had this weird toilet seat that was about 7/8 the size of the toilet, and slightly crooked. In my bathroom meltdown scene, I also asked for an appropriately-sized, non-crooked toilet seat.

I told you our bathroom was UGLY. This is the entire thing, too. A stall shower, with lemon-yellow tile. The best part is that someone actively chose this, RECENTLY! the tiles are in the basement. The man who owns this house is a single dude, who has no woman to stop him from making bad decisions, clearly. He didn’t replace things like the fixtures and the lighting, which I didn’t take photos of, but imagine 1965, and so old the aren’t even rated for ground fault. Oh, and the best part of the whole bathroom is that there was ONE towel hanger when we moved in. ONE. So, we had to hang a second one, right below it, so we could both have towels to shower with, hence the towel, hanging nearly to the floor, covering the toilet paper dispenser. I can’t reach the one that is above it, because it’s almost the height of the ceiling! This is the weirdest master bathroom that I’ve ever lived in, for sure!  P.S. I know that towel next to my husband’s sink looks dirty. It’s not. I swear. It’s stained. I used it to wipe of a charcoal mask…bad Rachel.  P.P.S. OH! I almost forgot, I am pretty sure the owner must be a smoker, but ONLY smoked in the bedroom, because no matter how many times we wash the walls, the bathroom walls “bleed.” it’s the only way I can describe it. An orange-ish, reddish dripping ick is always dripping down the walls. I’d say our house is haunted, but it’s only the bathroom, and it looks more like filth than anything else. It’s so gross. It seems like it’s something pulled from the paint, or under-layers of paint, when activated by steam, and it’s like old nicotine. It’s…just…gross. We’ve given up cleaning it up more than once a month or so, because it’s just impossible to keep up with!

I told you our bathroom was UGLY. This is the entire thing, too. A stall shower, with lemon-yellow tile. The best part is that someone actively chose this, RECENTLY! the tiles are in the basement. The man who owns this house is a single dude, who has no woman to stop him from making bad decisions, clearly. He didn’t replace things like the fixtures and the lighting, which I didn’t take photos of, but imagine 1965, and so old the aren’t even rated for ground fault. Oh, and the best part of the whole bathroom is that there was ONE towel hanger when we moved in. ONE. So, we had to hang a second one, right below it, so we could both have towels to shower with, hence the towel, hanging nearly to the floor, covering the toilet paper dispenser. I can’t reach the one that is above it, because it’s almost the height of the ceiling! This is the weirdest master bathroom that I’ve ever lived in, for sure!

P.S. I know that towel next to my husband’s sink looks dirty. It’s not. I swear. It’s stained. I used it to wipe of a charcoal mask…bad Rachel.

P.P.S. OH! I almost forgot, I am pretty sure the owner must be a smoker, but ONLY smoked in the bedroom, because no matter how many times we wash the walls, the bathroom walls “bleed.” it’s the only way I can describe it. An orange-ish, reddish dripping ick is always dripping down the walls. I’d say our house is haunted, but it’s only the bathroom, and it looks more like filth than anything else. It’s so gross. It seems like it’s something pulled from the paint, or under-layers of paint, when activated by steam, and it’s like old nicotine. It’s…just…gross. We’ve given up cleaning it up more than once a month or so, because it’s just impossible to keep up with!

 

Mr. Fix-It, fixed it. It has been more glorious than I can even imagine to sit on an appropriately-sized toilet seat. You sort of take those things for granted when they aren’t there!

 

But the bidet! I had read about these things, or seen them advertised, and thought that they seemed kind of neat, but not given them much thought until I was having trouble wiping. Yep, letting it all hang out, details-wise.

Nice and compact….hardly even notice it, and easy to reach, easy to use, and just plain awesome.

Nice and compact….hardly even notice it, and easy to reach, easy to use, and just plain awesome.

 

Oh, my Triscuits and Vegan Cheese! You’ve got to try this out!

I’m living in the south, once again - and once again, not by choice - thought I’d try out being colorful. Go get one. They are amazing! Ours pulls water right from the tank, so the water is cold, which let’s call “refreshing.” But, it has a few settings: some kind of misty shower setting and a more direct spray. You can also adjust the water pressure. Although, even at its fullest pressure, you aren’t going to be spitting it out of your mouth. Get it? It’s quite snazzy for something that went on in under an hour.

 

We learned pretty quickly that toilet paper isn’t enough to dry one’s tushie of the copious amounts of water that a bidet gets on your bootie. And, one of the great reasons to get one is to save a bit of toilet paper. I suggest investing in handful of towels that are expressly for bidet use. The fun part is choosing fun towel patterns that you know will be just for your butt. I found some really absorbent ones on Amazon that were inexpensive. And, they had pretty patterns, likely put on with super-toxic thread, or something terrible.  

The link for the product is here…they are awesome:  Poopie-Butt Towels

The link for the product is here…they are awesome: Poopie-Butt Towels

Since you’ll be drying, in theory, a clean behind, these should remain clean, and only have to be washed when you wash your towels, not creating a hindrance of laundry. It feels weird to share bidet towels, so Bryon and I each have our own. Collin’s on his own with his own bidet-less bathroom; but, since his bathroom looks like the Sunoco station when no one is on cleaning duty, I don’t feel one bit badly about that.

Towels on hooks for Bryon, Rachel and none for little Collin…oh well. if he’s dying to use it, he can. But, he never asks. The one time he did, we practically had to mop the bathroom afterward, as he sprayed the entire room. Not sure how little French kids get the hang of it. Didn’t Mark Twain say something about how bright the kids in France were, that even the little ones could speak French? Something like that is to be said about the bidet then too :)

Towels on hooks for Bryon, Rachel and none for little Collin…oh well. if he’s dying to use it, he can. But, he never asks. The one time he did, we practically had to mop the bathroom afterward, as he sprayed the entire room. Not sure how little French kids get the hang of it. Didn’t Mark Twain say something about how bright the kids in France were, that even the little ones could speak French? Something like that is to be said about the bidet then too :)

 

I’m not going to lie, we’ve each had an incident where we were sure we were all clean and shiny and when we went to pat dry…whoops! Needed to replace the towel. I’m nothing if not honest with you! And, we all know, especially my chronic pain warriors, that if we are on opiates for any length of time, that this thing is going to be a wondrously amazing gift! And…everybody poops! That’s why there are spare towels and detergent in this world. It all works out, “in the end.” Ba-dum-bum!

Because we rent, we obviously don’t put a lot of, or any, permanent, changes into a home, so we couldn’t do anything super spiffy. But, this works perfectly, and we get to take it with us when we leave! We take our shower heads with us too! Something about rentals screams shitty shower heads! Why? Why wouldn’t you put a decent shower head in a house? The kind that you can take down and do a decent spray and wash with? I will never understand this. The longer we are in, the more I look forward to our forever home…which I know is still many years out. Still, the list of things I imagine for it is expanding by the mile! Now, Bidet is added to that list..even if it’s tank attached.

The Answer to the Dots: Derm Weighs In!

I took my crazy Rachel body to the dermatologist’s this morning, in order to ascertain what the fudgie-the-whale is going on with my weird leg spots. Thankfully, my husband was able to take yet another morning off, despite it being another week of his new faculty orientation. A side note about that whole thing is how silly the military is about some things: why is he having to spend weeks orienteering himself to a campus at which he just spent his last full year? I’m pretty sure he knows where all the bathrooms are, and how to find the library?

I know I’ve mentioned the leg torture machine, here and there. This is the CPM machine, with my leg bending at 70-degrees. I have to use it 6-hours a day. I put my leg in, and it bends my leg to a prescribed degree, then bends it back to neutral, over and over again, until the end of time. It’s truly the best time ever.

I know I’ve mentioned the leg torture machine, here and there. This is the CPM machine, with my leg bending at 70-degrees. I have to use it 6-hours a day. I put my leg in, and it bends my leg to a prescribed degree, then bends it back to neutral, over and over again, until the end of time. It’s truly the best time ever.

 

I’ve been out of the “working” world for so long, that I get ambitious for a 9 am appointment, thinking that I can shower and get my makeup on, you know, look human, beforehand. I get the idea that if I get up at 7-7:30, I can accomplish the goal of leaving by 8:30, and be on time. Like always though, I left in sweatpants and a t-shirt, with my teeth brushed, and nothing more.

 

Honestly, if I had to get a real job again, I think it would be tragic for everyone. The poor peoples of the public sphere would be forced to see me straggly-haired and hideous, because I simply cannot stop snooze-buttoning, and/or I would drive my family crazy with flurrying around the house to get public-ready.

 

One of my favorite pictures of Mew from this week. He is a super anti-social cat, but he adores me, and his evening snuggles against my chest. This is his jealous face when I dared to give Bear a little scratch during Mew’s time. I thought it was adorable. My favorite part of this photo was that when I showed it to Bryon, he totally didn’t get it. He was like, “What? it’s the cats??” Non-cat people don’t get their little personalities. I think I might be crazy, and recognizing it is the first sign. I don’t want to do anything about it, but I do recognize it.

One of my favorite pictures of Mew from this week. He is a super anti-social cat, but he adores me, and his evening snuggles against my chest. This is his jealous face when I dared to give Bear a little scratch during Mew’s time. I thought it was adorable. My favorite part of this photo was that when I showed it to Bryon, he totally didn’t get it. He was like, “What? it’s the cats??” Non-cat people don’t get their little personalities. I think I might be crazy, and recognizing it is the first sign. I don’t want to do anything about it, but I do recognize it.

Anyway, back to the dermatologist! I couldn’t believe how busy this place was for a 9 am appointment! She’d already seen and cleared patients before we’d gotten there. I’m impressed with someone who is up and working before 9 am, on a Monday morning (back to my previous morning laziness). One thing chronic illness will get you, if you can afford it, (thank goodness for that!) is the ability to sleep in, on a Monday morning, without judgement.

 

The best part of this appointment was that it was totally unnecessary. But, of course I couldn’t cancel it because of the whole, “we’ll charge you $50 if you don’t cancel it by 5 pm the day before,” which was Friday. This is what my leg looked like this morning when we went in, despite the hideousness that it was last week:

Two things come to mind when i see this: first, i’m almost healed from the plague I had last week: and second, I used to have wicked calf muscles. Damn, it’s going to take a lot of work to get back to normal. Don’t surgeons know that I’m over 40. It takes 10x the amount of work to gain muscle and tone we lose when we lose it! Gaaaah! Not looking forward to this

Two things come to mind when i see this: first, i’m almost healed from the plague I had last week: and second, I used to have wicked calf muscles. Damn, it’s going to take a lot of work to get back to normal. Don’t surgeons know that I’m over 40. It takes 10x the amount of work to gain muscle and tone we lose when we lose it! Gaaaah! Not looking forward to this


I was pretty sure that this was going to be a waste of time, or that worse, she was going to be willing to take a biopsy, “just in case.” No one wants their skin sliced and diced just for the hell of it. Instead, she was the common-sense fairy, sent to deliver the most ridiculous diagnosis I’ve ever heard, and to both put all my fears to rest, and to make me feel like I’m, indeed, the most broken body in the universe.

All prepped for slicing and dicing me, if the need arose. Phew. It did not.

All prepped for slicing and dicing me, if the need arose. Phew. It did not.

 

I had an allergic reaction to, wait for it…Cold.

 

I did not have frost-bite. Apparently, that presents differently, so let’s be exceptionally clear. I had an allergic reaction to cold. She had a complicated name to what the rash is called, with the suffix “dermis” in there somewhere. I tried to file it away for this very purpose, so I could sound smart and official; however, I forgot it before I even left the exam room.

 

Me: What did she call it, exactly?

Bryon: I don’t know? Something medical.

Me: You are not helpful.

Bryon: Never said I was.

 

Anyway, all the other potential diagnoses were complete garbage. Shingles doesn’t go away that quickly. Vasculitis doesn’t start with a bug-bite presentation the way this did. Frostbite, right out. This was an allergic reaction, and it was specifically obvious to cold being present on my skin 24/7. Apparently, the histamines just build up, and build up, and then say, “nope, had enough.”

 

Oddly enough, I was pretty sure it wasn’t frostbite to begin with, as I’ve had frostbite on my face before, from headaches and ice packs on my face, forehead and jaws. When headaches go on for days, sometimes the ice sits there for hours upon hours and I get patches of frostbite. It’s normally just red and patchy. It never looks like what happened on my leg. I was willing to believe the marks on my leg showed up in the “shape” of the ice placed on the area, but it still seemed a little far-fetched. So, I’m glad I have an easier to believe diagnosis; even if it is a silly one.

 

Oh, and apparently, it’s quite unusual. Yep, of course it is. When she said that, I was like, duh!

 

So, moving forward I have to remember that I am technically “allergic” to the cold, and I should be careful of over-exposure. I plan to use this to my advantage, pushing my “allergy” as a reason to avoid cold weather activities which I already loathe. There shall be no snow shoveling (as if Bryon would let me), no sledding, no snow….fill in the blank, of any kind. There shall be no winter’ing. In other words, I shall forever forth experience winter indoors, from the warmth of the fireplace, waiting to greet my boy with hot chocolate, as he comes in, pink-cheeked and wet with the moisture of hell-season.

 

Allergies. The perfect excuse to avoid something we hate anyway. Can I be allergic to uncomfortable conversations, social situations, and meeting new people?

 

In totally unrelated news, when we arrived home from our excursion to the dermatologist, I discovered that the cats had some sort of extreme play session that landed this toy, which came from downstairs, into the toilet, upstairs. I’m not sure if this means they really had a raucous good time; or, if they are telling me that they hate this toy so much that they had to deeply coordinate this maneuver to throw it out. Either way, it’s now in the trash. Crazy cats. With their crazy cat lady mama.

For some reason, two of my three cats are obsessed with this toilet. No matter how much fresh water they have, they drink out of it. When they aren’t drinking out of it, they are examining it. When I’m on it, they are watching. When I’m not, they are wondering when I’ll be on it next. Cats are weird.

For some reason, two of my three cats are obsessed with this toilet. No matter how much fresh water they have, they drink out of it. When they aren’t drinking out of it, they are examining it. When I’m on it, they are watching. When I’m not, they are wondering when I’ll be on it next. Cats are weird.

 

Oh…and at least this time, for a weird dermatology thing, we didn’t get caught, “humping,” as my son says, like at the lip biopsy appointment a few months back. Nope. On our best behavior.

 

I’m having a hard time transitioning my writing from M.A./Ph.D writing to undergrad. So my paper topic is way too big and too in-depth for a 15-page paper. I have an outline/plan for what could amount for a dissertation or a book. My professor keeps telling me so, and to narrow. I know I need to! But, this weekend, working on the big picture took me two solid days. This was the result: judgemental kitties who didn’t get enough attention while i worked away at my lap desk. Sorry Homer and Bear. Lots of treats coming your way.

I’m having a hard time transitioning my writing from M.A./Ph.D writing to undergrad. So my paper topic is way too big and too in-depth for a 15-page paper. I have an outline/plan for what could amount for a dissertation or a book. My professor keeps telling me so, and to narrow. I know I need to! But, this weekend, working on the big picture took me two solid days. This was the result: judgemental kitties who didn’t get enough attention while i worked away at my lap desk. Sorry Homer and Bear. Lots of treats coming your way.

 

Of Course

I wouldn’t be me, if I didn’t have some weird confounding, extra medical anomaly, connected to my injury, surgery, or recovery. The funny thing is that I don’t actively wait for it, or expect it. I go through life, expecting normal recovery, and then, “Bam,” something weird happens, and I remember, “You can’t have nice things. You live in a body made of defective spare parts someone found in a bin marked ‘don’t use.’”

Finally, a selfie with Bear! It took a lot of work to get this shot! And it’s terrible.

Finally, a selfie with Bear! It took a lot of work to get this shot! And it’s terrible.

 

With this surgery, this awful, painful, dreadful, and torturous surgery, recovery has been slow, but steady. I’ve begun being able to bear weight on my surgical leg. I’ve begun being able to bend it to almost the expected angle, thanks to the most painful physical therapy session that’s ever been conducted, anywhere, ever, to anyone. Just ask. Or, count the tissues that I cried into, during the actual session. Nothing says grown up strong-woman, like crying in public, while a physical therapist manipulates her knee into what seems like normal positions.

 

But, in the last several days, my knee has suddenly looked like this:

Sure….looks like a bunch of bug bits punctuated by smushy leg brace marks. No big deal? Maybe a spider or something was smashed in there overnight and got a feast?

Sure….looks like a bunch of bug bits punctuated by smushy leg brace marks. No big deal? Maybe a spider or something was smashed in there overnight and got a feast?


But, shortly after, they look like this, and stayed that way, which is concerning:

Ummmmmm. WTF?

Ummmmmm. WTF?

At first, they were raised, and very, very, very itchy, like bug bites. We thought, at first, it was dreaded bed bugs. Correction, I thought it was bed bugs. Bryon wants credit for the singular time he was right, as he was certain we did not have bed bugs. I thought it was a reasonable assessment, as I was waking up with new lesions every morning, they were clustered together in groupings, and they itched. However, I was the only one getting bitten, and they were only biting my surgical leg, which was weird. I tried to justify this by saying that my operative leg must’ve smelled juicier and bloodier with all the swelling at the surface. Ew. Finally, there was absolutely NO evidence of bed bugs, despite tearing the bed apart, and examining every square inch. Even the Orkin man that we called confirmed that we were completely clear. Okay, Bryon was right. Mark it down.

 

It was also a good bet that they weren’t bed bug bites because about 24-36 hours after they itched, they flattened out into these weird flat legions that looked super…well, like I should see a doctor. So, I did. I called my primary care physician, who had no clue what it was. His first thought was a super scary word: vasculitis. I didn’t know what that meant, but he seemed awfully concerned about it, especially for a doctor dealing with me at roughly quitting time.

 

He spent about an hour on the phone, texting pictures and calling back and forth between infectious disease (oh my god!!) and my surgeon, arranging for me to be seen immediately the next day, and brainstorming about what was wrong. The working theory for the night was vasculitis.

 

The next day, my first appointment was with the surgeon. His assessment went something like this:

 

Vasculitis? No! It took me a while to remember where I’ve seen this before, but I think it’s frostbite burns from your ice machine pad….(examines the area for a bit) wait, no…it looks like shingles! It’s traveling along the blah-blah nerve. Yeah, I think it’s shingles…yep, the more I look at it, I’d say my best guess is shingles.

The ten minutes we were there, he became more and more convinced it was shingles, the point that all other diagnostic ideas seemed preposterous to him, or at the very least, far secondary options.

 

Call my primary care doctor back to find out what time, and where to go for infectious disease, and the phone call goes like this:

 

Shingles? No way. Probably vasculitis…Or, some kind of infection….not shingles…nope…no how…anyway…this is where you go.

By the way, she wanted me to just “storm the door,” to infectious disease. In other words, her initial plan was for me to just show up, say that I was sent there, and to just camp in the waiting room until someone saw me, because they all know one another, and if I made a stinker of myself, they’d see me sooner. I was NOT about to do that!

 

Get to infectious disease, and this is how that visit goes:

 

Nope, not shingles. And, it’s definitely not vasculitis. That’s for sure. Probably not an infection…spots are too different. Gosh, I have no idea, but it sure isn’t right. You need a biopsy on those spots. Need a dermatologist, or at worst case scenario, a plastic surgeon. But, it’s 3 pm, on a Friday. He calls my primary care doctor, and my surgeon to talk over what they think it could be, again. He wonders if it is an allergy to my own cartilage, or the graft, or maybe the bolts. It’s not.

 

Phone call to Primary Care, after I leave infectious disease, to figure out dermatology:

 

Sorry, called five dermatologists. No one can see you today. They’ve all left because it’s Friday. Expected. Got an appointment for first thing Monday morning.

Hilariously, they ask that if I need to cancel it, I do so before 5 pm, otherwise they will charge me $50. How, I ask you, as they have nothing but my name? However, I will not be cancelling, as I’m thrilled to death to have someone cut a chunk out of my leg. It sounds like fantastic fun.

 

Note from all doctors: if I start to run a fever or start sweating at night, or the spots change in any way, I’m to call any one of them immediately, and/or head to the hospital. I’m not sure which one wants the phone call. I’m sure all three of them would call the other two, since they are all fascinated with the mystery spots now. Since I have kind of a cool doctor that takes care of all my doctor referring, finding and records transferring, they are all on the ball with my bloodwork and the whole case, so they are totally invested. Plus, it’s weird, and their most fascinating case of the week…at least. That’s Rachel: Weird Medical Science.

 

So, that’s been my last two days. It was fun to miss a few hours of class on Tuesday because my doctor was playing phone pissing contest about which diagnosis seemed the most appropriate, who should see me first, in what order, and whose schedule was more booked. My surgeon was great though; all he said was, “send her in, whatever,” which was comforting, because he made me feel like maybe it wasn’t a big deal, and he made me feel like he’d see me no matter what, if something went wrong.

Pain Management: Lifesavers

I kept falling asleep while I wrote this…and when I tried to proofread it, the same thing happened. So, oh well! It is what it is.

Remember how I mentioned pain management last time? How I said I’d had to call, almost immediately after surgery to say, “Yo, this medication isn’t cutting it, can I take more?” And then, I had to go see them, again, to say, basically the same thing?

Being bed-bound has its advantages. Look at my companion. Like the cats, he never leaves my side. He thinks that the headphones make him look like an official “gamer,” and he made me take his photo.

Being bed-bound has its advantages. Look at my companion. Like the cats, he never leaves my side. He thinks that the headphones make him look like an official “gamer,” and he made me take his photo.

 

Well, I had to call again. It still wasn’t strong enough. I was told to take a different combo of the same meds, at a different time. Because of the amount of meds this would require, I needed a refill almost immediately. I know, I know, it sounds like I might be a giant baby. Or, I am craving my Dilaudid and Oxy combo, and becoming some kind of fiend. Or, the most likely scenario, the whimpers and sobbing that came out of me, as the meds wore off, are indicative that the medication is both not strong enough, and not lasting long enough.

 

So, now I was on visit/call number FOUR, to pain management. This time, I was scheduled to see the actual doctor, not her PA. This was the big time. I was both afraid, and excited. I was afraid, because I knew I had to tell her that I’d been taking one extra pill per dosing period. I knew that was important for her to know, so she could dose me properly, when she adjusted meds; but, this was the first time I’d ever taken more medication than I was prescribed. To put that in perspective, I’ve been on opiates of some kind since 2014. In five years, I’d never taken a single extra pill. That’s how brutally painful this surgery has been. So, this scared me, because I was afraid she’d think I was taking them for the wrong reasons. In reality, if I didn’t take them, I was shaking in pain. I was excited too though, because I thought that she might be able to help me. There is nothing, nothing, nothing that will ever shake my optimism about seeing a doctor when I’m truly sick. I continue, perhaps blindly, to believe deeply in the curative power of the white coat, and the deep humanitarian desire to help others that they all share.

 

Doing homework, with my judgemental pal. He helps me do well, otherwise he has an opinion about it.

Doing homework, with my judgemental pal. He helps me do well, otherwise he has an opinion about it.

Sitting in the waiting room was brutal. I’d gotten close to my dose time while we were sitting there, so I was in agony. It isn’t that I couldn’t take my meds while I was at the doctor; they have water, and I packed my pills. It was that I couldn’t take them for another hour or so; I was only close to my dose time. Close means my meds had worn off, and I was suffering. The worst part was that we had sat there, patiently, for forty-five minutes past our appointment time, before we asked the front desk if something had gone wrong.

 

They, of course, said I was next, and I’d be called momentarily. You could see them scrambling behind that little window. Someone had clearly misplaced my chart. I’d never have been called, had Bryon not gone to the front desk and asked about me. They called me back, almost immediately…to what amounted to a spare stock room, not an exam room. Sure, I was next. It was absolutely planned this way. Except that the tech that called me back profusely apologized for misplacing my chart and causing the whole thing. I do love when people apologize for messing up when they are in a face-to-face customer service industry, it makes all of the difference in the world. I was immediately no longer frustrated.

Loki’s opinion of my homework is far less strict. He feels that as long as I do my best, he’s cool with it.

Loki’s opinion of my homework is far less strict. He feels that as long as I do my best, he’s cool with it.

 

Anyway, when the doctor came in, a doctor who I’ve never met, yet who is the doctor I’m billed under every time, this is how the beginning of our conversation went:

Now that Bryon has gone back to work. Collin is my day nurse. I usually don’t wake him up until the God forsaken hour of 10 am. But, even then, it’s too early for him, and he comes dragging into my bed for these precious snuggles. I had to break my leg for this, but it might have been worth it.

Now that Bryon has gone back to work. Collin is my day nurse. I usually don’t wake him up until the God forsaken hour of 10 am. But, even then, it’s too early for him, and he comes dragging into my bed for these precious snuggles. I had to break my leg for this, but it might have been worth it.

 

R: I don’t know you. (yep, this is how I greeted her). I mean--sorry. Probably should’ve said something else, it’s just that I have been seeing someone else. Maybe---

 

Dr: Probably Diana?

 

R: Yes! Diana!

 

Dr: Don’t worry. I oversee all my patients. I’ve read your chart from top to bottom and I just reviewed it now. I see your meds are fucked up for this. Tell me about your surgery. It looks like hell.

 

R: (Shocked pause….then told her about the surgery).

 

Mew is enjoying my convalescence as well. He spends a lot of his day hiding under the bed, so now that there is someone IN the bed that he hides under, he is quite pleased to have a visitor.

Mew is enjoying my convalescence as well. He spends a lot of his day hiding under the bed, so now that there is someone IN the bed that he hides under, he is quite pleased to have a visitor.

I thought I would never find a doctor I loved as much as Doctor W in California, but she’s quickly becoming a close second. She swore, so goddamn much, I was impressed. I’ve never seen a doctor behave like that. But, It wasn’t he swearing that I liked, it was the matter-of-fact way that she dealt with my situation.

 

More homework. This is my general plan-ish for my big paper. It took me days to come up with this plan/idea that looks like a mess. Going to start working on it this weekend and see if it falls flat.

More homework. This is my general plan-ish for my big paper. It took me days to come up with this plan/idea that looks like a mess. Going to start working on it this weekend and see if it falls flat.

When I told her that I was taking an extra pill at every dose, she wasn’t mad, she didn’t judge me; she said she was glad I told her because she needed that info for her math to figure out how to plan to dosing for what she wanted to prescribe next. She was pissed that her staff of PA’s didn’t think of putting me on a long-lasting opiate, instead of short-acting ones, that work, but have the nasty tendency to provide peaks and valleys of pain relief and absence of pain relief for patients in acute pain.

 

More joyous cats who are happy I’m in bed.

More joyous cats who are happy I’m in bed.

I told her that I’d specifically asked for an extended-release opiate when I came in, before my surgery, and we discussed the plan for pain relief. The doctor got angry when she heard that. A few “F-bombs” were dropped. I explained that, based on my brain surgeries, I knew that had been what worked the best for me, for serious surgeries; so, it was my best guess here.

 

Now, four weeks in, I was up to 80 mg of oxycodone, and 16 mg of Dilaudid a day. That is an insane amount of opiates. It was enough to be getting dangerous, especially when combined. The worst part was that I was still in pain, despite the massive amount of drugs I was taking. It seems impossible, but I was. I could kiss my doctor for telling me that it wasn’t, and that it was perfectly reasonable to be in this kind of pain with short acting meds, after this kind of operation.

 

She scribbled on a piece of paper for several minutes doing all kinds of complicated math. She mumbled half addition and multiplication problems randomly, drew arrows all over my intake page, crossed-out, and finally came up with an answer. She prescribed an extended-release opiate, in the 36 mg dose, which happens to be the largest it comes in (the pharmacy had to order it). I take it twice a day (every 12 hours). Additionally, she prescribed a short acting opiate for breakthrough pain that I’m allowed to take up to three times a day. Viola, a plan that should work.

A rare sight: all three cats in the bed, in close proximity to one another. Homer hates Mew, and Mew harasses Homer. It’s all very social dynamics of cats, in real time, developing. I’m always reprimanding them, and giving them serious lectures about how to treat our friends. They don’t listen.

A rare sight: all three cats in the bed, in close proximity to one another. Homer hates Mew, and Mew harasses Homer. It’s all very social dynamics of cats, in real time, developing. I’m always reprimanding them, and giving them serious lectures about how to treat our friends. They don’t listen.

 

She ended the appointment with this:

 

“You call here if there is a shitstorm, and we’ll fix it. This amount of pain is unacceptable. Un-accept-able. We’ll get through this. Together. I promise.”

 

There’s no way of explaining how awesome it is to feel like your doctor is totally on your team. I felt like I could pick up the phone, at any time, call, and say, “it still hurts, help,” and she’d drop everything to call in something new. I needed that feeling, right then, after struggling for so many weeks.

 

So far, for the last few days though, I think we may have found the right balance. The problem will be that getting off the extended release opiates is a different story than getting off short acting opiates. It is a whole different animal, and a pain in the ass. I’ve done it before, and I can do it again, but ugh. All I can say is that at least it’s not Fentanyl.

 

Alas, this is where we are at, at the moment. I’m finally on extended release opiates, and I just started PT, which is brutal. I cried yesterday, but she didn’t stop. I think she liked watching me writhe. I am still taking my Harvard class, and kicking ass in it. Yeah, that’s right, broken leg and all, I’m doing awesome. Nothing brings me more joy than school. I’m crazy, I think. I wish we had class every day. I can’t wait for next semester, when I have two classes. It will be a dream!

 

I am up to being encouraged to bear 25 lbs. on my broken leg, which doesn’t sound like much, but the goal is to be off the crutches in about a month. So, between the exercises that PT has me doing at home, the massages that they want me to do, and just regular aches and pains of healing, my leg is giving me a run for my money. Thank goodness for new pain meds, and a pain management doctor who cares about pending shit storms.

Fulkerson Recovery, So Far: By the Numbers

It’s hard to talk about this surgery’s recovery without simply breaking down into racking sobs, complaining endlessly, or considering amputation. So, I thought I’d just give you a run-down of a few “by the numbers” factoids, instead of a rambling essay about how damn much it hurts, twenty-four hours a day, seven days a week.

My nurses, making sure i get lots of rest.

My nurses, making sure i get lots of rest.

So, in no particular order…


Weeks, to the day, since surgery: 3

 

Times pain management has had to adjust (increase) pain meds, because the pain had caused uncontrollable shaking: 2

 

Seasons of “My Big Fat American Gypsy Wedding” I’ve watched since surgery: 6 (side note: amount of guilt or shame I’ve felt for watching total trash television is absolutely zilch, nada, zip)



Showers I’ve managed to take, in total, in three weeks: 4 (I say “I,” but it’s a “we” process, because it requires massive assistance from Bryon. It takes about an hour from start to finish, and leaves me exhausted for about two hours afterward)

 

Blood clots I’ve managed to accumulate: 2

 

 “Dangerous” blood clots: 0

My third nurse, who tends to alienate himself from the other two, or from combinations of the other two, at any given time. He’s kind of a jerk, frankly. But, he likes me, only me, and can be awfully sweet, when he wants to be. And, he’s awfully cute.

My third nurse, who tends to alienate himself from the other two, or from combinations of the other two, at any given time. He’s kind of a jerk, frankly. But, he likes me, only me, and can be awfully sweet, when he wants to be. And, he’s awfully cute.

 

Amount I’ve learned about blood clots: Lots. Apparently, you can have blood clots in the soft tissue, not just in the vein. And, they can be huge, as I’ve also learned. Soft tissue blood clots still hurt like a motherfucker, but aren’t dangerous. Eventually, they break up, and re-absorb, but in the meantime, they are intensely painful, especially to the touch.

 

Upper Respiratory Infections: 1 (Always have to thank the kiddos for bringing home colds at the most inconvenient times)

 

Average number of times I get up to pee per night thanks to extra fluid intake: 4 (again, “I” = “we.” Bryon is a damn hero. He holds my leg up while I pee, so I don’t have to try to lift it myself, to a stool, in the middle of the night. Seriously, Bryon=Hero).

 

Pillow arrangements we have tried to “get” comfortable and/or elevate: 5,049,789

 

Hours a day I’m supposed to use the torture leg extender machine: 6

 

Torture leg machines that have broken so, far, and have had to be replaced: 2

 

Birthdays that I have had during recovery: 1

 

Years on this planet: 41

 

Years I thought I had on this planet: 42

Diamonds!! The float freely inside the face, and they are so pretty! The hands and numbers are actually sapphire blue, as are the little nubbins on the side, called cabochons. The whole thing is just so pretty I can hardly believe it. It’s possible I love jewelry. I’m not sure.

Diamonds!! The float freely inside the face, and they are so pretty! The hands and numbers are actually sapphire blue, as are the little nubbins on the side, called cabochons. The whole thing is just so pretty I can hardly believe it. It’s possible I love jewelry. I’m not sure.

 

Present I bought for myself for my birthday: my first Chopard (yeah, I know it’s not a number, but it cost a bunch of numbers, and it made me happy when I wasn’t feeling so happy. Just pricing it, shopping for it, and negotiating for it, kept me alert and happy for several days. I love it. It adds to my fancy watch collection, and it is glorious. It’s pre-owned, so I got a good deal from an awesome jeweler, which made it affordable. It looks great with jammies. – P.S. Bryon gets nervous when I say things like “my ‘first’ Chopard.” I wonder why?).

 

Days I spent on my last homework assignment: 2

 

Weeks left of the semester: 6

 

Weeks left until I’m allowed to bear any weight: 6 (again: the timing of my first class with this surgery is the absolute worst…but I’m pressing on. Collin told me, the other day, unsolicited, “Mommy, I’m proud of you.” It was singularly, one of the greatest moments of my life. I’m holding that memory in my heart as fuel for the rest of my career, and life).

This is the strap that goes around my leg for the leg torture machine. Collin felt that it made a good hat. I think he looks dashing.

This is the strap that goes around my leg for the leg torture machine. Collin felt that it made a good hat. I think he looks dashing.

 

Bags of frozen squishy pockets I’ve eaten (other people call them pot stickers): 14? Maybe more? I love them.

 

Bouquets of flowers, and new potted flowering plants Bryon has filled my room with: 6

 

Naps I take throughout the day: 2-10 (long vs short 10 min-ish)

 

Nice bruise on the side of my foot, just because it felt like appearing there. It actually hurts too. The best part of this photo is that the striped fabric under my foot is a DRESS! I wasn’t wearing jammies that day. I was dressed, wearing jewelry, and had combed my hair.

Nice bruise on the side of my foot, just because it felt like appearing there. It actually hurts too. The best part of this photo is that the striped fabric under my foot is a DRESS! I wasn’t wearing jammies that day. I was dressed, wearing jewelry, and had combed my hair.

Bruises that continue to pop up, randomly: indeterminable (new one on my foot last week, and more on the back of my knee – they can continue to pop of from my foot to the top of my thigh for the next six months. Pretty).

 

This is the back of my leg. If you are wondering whether this a  bruise that looks worse than it feels, it isn’t. It looks just as bad as it feels. It’s horrendous both ways.

This is the back of my leg. If you are wondering whether this a bruise that looks worse than it feels, it isn’t. It looks just as bad as it feels. It’s horrendous both ways.

Overall, this experience has been, and continues to be, rougher than I had expected it to be. I start physical therapy next week, which promises to be another step towards healing, but also to be painful. Thankfully, my mother-in-law will be taking me to my first appointment, and there is no greater comfort than her at an appointment like that. My orthopedic surgeon promised that I should expect a few steps backward when they start their work, but also that by the time this is all over with, I will be so happy I did it. We shall see! I am still optimistic, and despite my tendency toward depression, especially when I’m stuck in invalid positions, I’ve actually been feeling really great, mentally. I am making a conscious effort to hang onto that positive attitude, and focus on recovery, at the same time.

Break a Leg

The long-awaited date of the Fulkerson Osteotomy, with bonus cartilage transfer, finally arrived on Monday. To be honest, I wasn’t all that nervous (because I was an idiot). I’m a surgery pro, these days. Instead of being scared, I was dreading the pending little irritants that come with any medical procedure. For example, there is nothing worse than the wait between getting in the gown, and getting wheeled back to suck down the knock-out gas. This time, I was only a tiny bit joking when I told both the nurse and the anesthesiologist, that anytime they felt like knocking me out, I’d be fine with it. Or, it gets mildly annoying to repeat your name, date of birth and drug allergies to everyone who walks by; why the janitor needs to know that you are allergic to Cipro is baffling. I understand, of course, that it’s a safety issue ensuring that they are always talking to, and working with, the correct patient. It doesn’t make it less tedious when you are already stressed, and in your altogether, barely covered by a gown they’ve asked you to leave untied (why??).

First Day post op…before the bruises developed all the way. Under the steri-strips there are NO stitches. When I asked why, the nurse laughed and said that there are probably hundreds UNDER the incision and that people who have no stitches on top are the ones who have the no-shit surgeries. He said that, basically, on the knee, you should be grateful if you have stitches. Good to know.

First Day post op…before the bruises developed all the way. Under the steri-strips there are NO stitches. When I asked why, the nurse laughed and said that there are probably hundreds UNDER the incision and that people who have no stitches on top are the ones who have the no-shit surgeries. He said that, basically, on the knee, you should be grateful if you have stitches. Good to know.

 

It started at about noon, and I came around from anesthesia at around 5 pm. So, deduce from that, what you will, about how complex of a procedure it was, and how fucked up my knee was, and is. The surgeon did what surgeons always do, handed me some pictures that he took during the operation that make perfect sense to him, but look like scribbles done by a two-year-old with only two colors in in crayon box: red and flesh. “Ahh, yes,” you say when he points at things. “I see,” and “great!” you acknowledge, when he looks for reassurance and praise for how he rearranged the fleshy bits. From my special photos, I was supposed to glean, generally, that my knee was far more of a disaster than it was since the last time he was in there, and that he made it all better. Hopefully,

What bruising actually looks like..and that’s my fist next to my leg. I know it looks weird. The worst bruising is under my knee cap and on the back of my calf. But, it hurts too badly to turn my leg over and take a picture. I literally cannot turn my leg without crying. So, you just get to see these. This is on day four.

What bruising actually looks like..and that’s my fist next to my leg. I know it looks weird. The worst bruising is under my knee cap and on the back of my calf. But, it hurts too badly to turn my leg over and take a picture. I literally cannot turn my leg without crying. So, you just get to see these. This is on day four.

 

The general plan of a Fulkerson Osteotomy is terrible. The surgeon drills holes in your shin-bone, then “gently” cracks it, and uses the break to stretch the shin out a bit, leaving it easier to line you knee up with it later. In case that last part was unclear: HE BREAKS YOUR LEG. This is important because when it’s time to do the second bit, which is picking up your kneecap, which happens to be securely held in by muscles and ligaments that he has to get out of the way by slicing them, he’s got to have a nice secure place to line it up with. He drills a few holes in that broken leg, and then, puts in some surgical bolts, realigns the knee cap to allow it to track in the right place sews all the muscles and ligaments back where they go, and viola, new knee. Sort of.

 

My surgery was special, mostly because I’m special, of course. But, it was also special because I was lucky enough to have a few spare cells of cartilage left under my knee that weren’t too ravaged by arthritis. And, when I say, a few, I’m not exaggerating. I had such a small amount left, that when the surgeon went in to harvest them, that was literally all that was left. I had such a small amount of cartilage that my knee had been rubbing bone on bone so long that it had created a new shape on the underside of my kneecap, a giant pothole. It’s nice to have your body compared to a bumpy road.

 

Obviously, I have top-notch nursing care while in my convalescence. Mew is still in training, so he runs off to chase dust-bunnies, shadows and other random objects and invisible non-objects. But, when he’s in cuddle mode, he’s pretty purrr-fect. I couldn’t resist.

Obviously, I have top-notch nursing care while in my convalescence. Mew is still in training, so he runs off to chase dust-bunnies, shadows and other random objects and invisible non-objects. But, when he’s in cuddle mode, he’s pretty purrr-fect. I couldn’t resist.

Anyway, they used my tiny few cells to clone a whole new “sheet” of cartilage to slap under my knee cap while it was being shifted to its new spot. While my leg is wide open, ain’t no thing to flip my knee cap over like a bowl and glue (yes glue!) some new cartilage under there. It’s like an empty cup, fill ‘er up. This part of the surgery is immensely fascinating to the people in my corner of the medical community, apparently. For example, my primary care doctor is obsessed with the details of the cloning laboratory, which is in Boston. He wants to know everything about the lab, the process, and the transfer. And, my physical therapy office has therapists fighting over who gets to be my post-op provider because this is such interesting technology; they want to watch the recovery evolve real-world, instead of in theory.

 

“In theory,” was how I treated this whole thing since I started planning for it. I “imagined” the recovery. I was told that it would be at least about nine months before I’d be about to return to a modified “normal” activity level, and about a year before the cartilage fully adhered to my body. So, I’d still have to be exceedingly careful about how I used my knee for quite some time. Okay, got it. I knew that I’d be in a lot of pain, for quite a long time, as well. In the reading about prep, it’s recommended that if I had a job with NO physical requirements, I should plan to take a minimum of 12 weeks off. I should’ve seen that as a warning, but I didn’t.  Every doctor I saw, (the surgeon, primary care, pain management) all told me that there was no real way to describe the pain I was about to be in, that this was a major surgery, and that it’s exceedingly painful. Okay, got it. Filed away in the part of my brain labeled, “Rachel is an idiot who ignores important stuff.” To be honest, that file drawer is more of a room that that looks like a hoarder house.

 

Of course, surgery is painful. I even filed the “exceedingly painful” part away. It’s all relative, right? When they all told me that the pain and recovery was best described as “brutal” for the first two weeks, I didn’t so much ignore them as file it in my brain as a theoretical event. It’s like I thought it was a thing that happened, but not so much to me. What the fuck was I thinking?

 

We’re on day seven, and today, I only broke down in hysterical sobs for a total of about two hours. This is less than yesterday, and I’m counting that a victory. So far, today, I’ve only shaken, in uncontrolled pain for several hours, and they weren’t all consecutive. But, the biggest victory of all is that I got out of bed, all by myself, and returned to bed, all by myself. I went a distance of three feet, to get a sweatshirt. While the distance itself is not the victory, I lifted my leg both out of the bed, and back into the bed, without breaking into a cold sweat, and without breaking into tears.

 

As you can tell, being theoretically prepared probably didn’t leave me especially mentally ready for what was to come. Although, if I had known, I don’t know that I’d have liked to have lived with the fear of what was coming. This is, hands down, the most painful surgery that I’ve been through. I can safely say that because I was so doped up during brain surgery recovery, that I don’t remember a lot of it. Bryon assures me that I had bad moments then too, but watching me go through this, he’s pretty sure that, now, this is quickly overtaking a surgery in which a doctor sliced my neck muscles like a curtain, drilled a hole in my skull, and then shoved my brain around, squashing it back through the skull hole. Yep, this is more painful than a surgery that required my body to be bolted to a table.  

 

In the last seven days, my leg has been having a contest with itself. It’s trying to decide which hurts worse: the broken leg, or the knee cap that the doctor fucked around with, including the ligament and muscle movement. For several hours at a time, my shin will hurt as if I have the worst shin splints known to man, times a million. Then, suddenly, as if from nowhere, my knee will feel as if…actually, there truly are no words. The only way to describe the pain is to say that I wish I had no knee. I wish I had no leg at all, in fact. I’m sure that in a few weeks, or maybe months, I’ll take that sentiment back; but, there have been so many moments in the past seven days that I’ve genuinely felt that. I feel like I owe the amputee community an apology for wishing to be disabled (“especially” abled?? What’s the right way to say it) in that particular way.

 

The “best” part of this whole procedure is this torture device. I don’t know what it’s actually called. I’ve been coming up with medical-sounding names for it, and alternative casual names for it. I feel like we can be on first name basis, after all; I mean, it’s seen me cry. For example, I have called it things like, simply, “the device,” or “the knee re-inventor.” But, I use my best horror movie preview announcer voice. Or, I call it Helga, or some other brutal-sounding name to American ears, like Oleg. I think it was invented by a masochistic doctor, who, in his private time had a murder dungeon and went undetected as the nation’s most prolific serial killer.

This machine is super weird, large, and ridiculously loud. It’s not supposed to be loud, but I think it’s on its last legs. We’re already on our second machine. The first one broke on the first day, and the machine delivery dude had to bring us a “new” one. This one groans and creaks every time it raises and lowers. The black tubing is to the ice machine. The tubing is connected to the pad on my knee that is filled with ice water that continuously filters back and forth from the cooled machine on the floor. it works pretty well.

This machine is super weird, large, and ridiculously loud. It’s not supposed to be loud, but I think it’s on its last legs. We’re already on our second machine. The first one broke on the first day, and the machine delivery dude had to bring us a “new” one. This one groans and creaks every time it raises and lowers. The black tubing is to the ice machine. The tubing is connected to the pad on my knee that is filled with ice water that continuously filters back and forth from the cooled machine on the floor. it works pretty well.

 

This machine’s job is to keep my knee from developing too much scar tissue, too quickly. Additionally, it’s to help keep me from losing basic mobility, while in the first stage of the healing process. I have to strap my leg into the machine, set the angle, which for this week is a maximum of 30-degrees, and then let the machine raise and lower, ever so slowly, repeatedly. This sounds easy enough. However, I have to do it for a minimum of six hours a day, and considering it hurts my knee even to breathe, raising and lowering thirty degrees for six hours feels like a bridge too far most of the time.

 

Still, I’m not going through all this recovery pain for a knee that heals wrong; so, I suffer through it. I do what the doctor orders. I literally clench my teeth, and do it. I sweat in pain, shake, and whimper. I cry, sometimes scream, sometimes moan, and sometimes simply put my brain in a place no one, and nothing, can find me. It’s been an adventure in suffering that I have been unprepared for. Truly, with what I’ve already been through, I thought I’d be ready for this. I was wrong.

When I’m just chilling (which is always) between ice machine sessions and torture machine sessions, this is my standard look. I have a giant brace that weighs more than Collin when he was born. it’s very restrictive. It has dials on the side that adjust to how far my knee is “allowed” to bend. Right now, I’m not allowed to bend at all.

When I’m just chilling (which is always) between ice machine sessions and torture machine sessions, this is my standard look. I have a giant brace that weighs more than Collin when he was born. it’s very restrictive. It has dials on the side that adjust to how far my knee is “allowed” to bend. Right now, I’m not allowed to bend at all.

 

If all this isn’t enough, the humility that a surgery like this forces you into is pretty astounding. First of all, I farted at my first post-op appointment, so loudly, in front of the X-ray technician, that it echoed, and I had no choice but to own up to my flatulence, and apologize. Thanks to all the opiates, my stomach is a mess, and I have tons of gas. I was valiantly holding it in when the X-ray tech wanted an image of one leg over the other. I was laying on my side, squeezing that poor ball of gas in with the might of a thousand clenched butt cheeks. But, she grabbed one leg and twisted my hip to rotate the back leg over the front leg, basically wringing out all hope of my holding my fart in. I will, forever, call that position the fart-wringer.

More of my nursing care buddies. I love that they choose to lay in the smallest spot possible, just to lay near me. They keep getting pushed off my lap, because they can’t lay on my knee, but they want to be near. They are so sweet that I can’t stop giving them too many treats. I’m not sure which they love more, me or the treats; but, I don’t want to pull too much at that thread.

More of my nursing care buddies. I love that they choose to lay in the smallest spot possible, just to lay near me. They keep getting pushed off my lap, because they can’t lay on my knee, but they want to be near. They are so sweet that I can’t stop giving them too many treats. I’m not sure which they love more, me or the treats; but, I don’t want to pull too much at that thread.

 

The care your loved ones provide for you, especially personal care, is also humbling. I’m no stranger to this kind of care, of course, thanks to my history, but this time it has gotten even more personal, which I didn’t know was possible. Because I can’t bend my knee at all, Bryon has to hold my leg up in the bathroom. There’s no room for a stool. You know it’s love and commitment when your husband holds your leg up while you pee, and worse. Obviously, he’s got to wash me, feed me, and bring me everything I need. I cannot, and I mean cannot get up from the bed without assistance. I’m one-hundred percent reliant on him.

My favorite nurse, doing what he does best. I love this picture of him. His little leg hanging off the side of the bed is too precious. When he sleeps with his face down, we call him Garfield.

My favorite nurse, doing what he does best. I love this picture of him. His little leg hanging off the side of the bed is too precious. When he sleeps with his face down, we call him Garfield.

 

Wish me luck because today we are attempting my first post-op shower. Yep, seven days and I haven’t had a shower yet. I’m a little ripe. The pain has been so intense that the idea, while we’ve been throwing it around, has seemed like suggesting going out for a Forrest Gump-style run. Now, it’s gotten so long that we sort of have to do it, regardless of pain. I’m a little scared. Bryon is putting on his brave face, and I’m bracing myself.

Homer is a great care-giver, but he is old and ornery. If he doesn’t get control of the remote, he gets grumpy. He gets a little impatient when all I want to watch is reality television for 18 hours straight.

Homer is a great care-giver, but he is old and ornery. If he doesn’t get control of the remote, he gets grumpy. He gets a little impatient when all I want to watch is reality television for 18 hours straight.


 

I have learned a few things so far though:

 

  • Move your leg from the horizontal to the vertical position as slowly as possible. As the blood flows down, it is the most painful sensation you can imagine. Poor Bryon has claw marks on his shoulders and arms from my death grip, as I shrieked in agony, every time he helped me up to pee, until we figured out this little trick.


  • Use your good leg to support your bad leg, in bed. It doesn’t matter how many pillows you’ve got, or how you have them arranged, it’s not good enough. Use your foot, and nestle it against your bad leg until it’s just right. You’ll be able to fall asleep. You’ll wake up a tangled mess, but the rest is worth it.


  • Ice. Ice. Ice. Ice. Ice. Then, more ice. Ice. Ice. There can never be enough ice. Always ice. You will be given (actually, be forced to buy) an ice machine. Use it. Instead of putting ice and water in it, get those tiny water bottles and freeze them. Use those as “ice” in the machine. They stay colder longer, and they work better. But also pack on the traditional ice packs too. The ice machine pad isn’t big enough to cover your leg from the knee to the ankle. This surgery can cause bruising from the thigh to the tips of the toe for up to six months. Obviously, you need lots of ice packs.


  • Miralax, in a steady stream. Never stop mixing it with your drinks. Yes, I’ve “heard” the weird study about how Miralax is supposedly dangerous with kids; I’ve also got critical thinking skills, and can evaluate how to recognize a flawed and biased study. Use it at least once, maybe twice a day. If you have a serious surgery like this, you will be on serious opiates. You will never poop again if you don’t do something really proactive about it. It seems like a small issue, until it isn’t. Trust me.

Congrats McClain Men

So, while this was probably a pretty boring post, with not much to say, it all has to be said. I am madly in love with my family, of whom I am intensely proud.


This week has been busy. First of all, my son reminded me (and Bryon) that we are, indeed, getting older, by graduating from elementary school and “rising” to middle school. At least, that’s what they call it, these days. He’s now a “rising” seventh grader. My infant, tiny baby is now a middle schooler. I’m not sure when, and how that happened, but somehow my baby is now a pubescent mess most of the time. Sometimes, in fact a lot of the time, his sweet self still shines through. But, there’s a fair amount of the time that his hormonal self is on full display.

 

Nonetheless, he rose to seventh grade this week. We sat in a crowded gym, because there were something like a million sixth grade classes. They had to do two graduation ceremonies, divided by alphabet, because there were just so darn many sixth graders to rise. It was very well organized, and efficient. Forty-five minutes of very quick name-reading, organized clapping, and absolutely no hugging of your student and no contact. They were shuffled in and out without so much as a wave to their parents. The number of disappointed grandparents with bouquets and balloons that went undelivered was heartbreaking to see.

 

Best pic I could get of my boy graduating. That’s him in the yellow shirt!

Best pic I could get of my boy graduating. That’s him in the yellow shirt!

I do have to pause here to point out that, in Virginia, they give out an award that is vaguely labeled the D.A.R. Award for Good Citizenship. It seemed obvious to everyone there that it went to a girl, automatically. So, I was immediately interested in what the hell this award was. I had to google. Only in the south do we give out awards called Daughters of the American Revolution, apparently. The DAR is clearly an “inclusive” organization these days, but…hmmm….the past.

 

I’d be remiss if I didn’t mention just how proud I was of my little munchkin though. He’s had a rough year. The principal of his school made a point of mentioning how many students had been with his school since kindergarten, as if that was some kind of accomplishment, the sense of community at the school. I’m not sure how it’s an accomplishment to, what, not move? A bigger accomplishment, in my book, is a kid like Collin, who has been to more schools in his short lifetime, than most kids will ever go to. He started two new schools last year alone. And, he did it cool as a cucumber, and managed to transition just fine. That’s my amazing boy. Military kids are incredible. They have to adjust to new surroundings all the time, and they have to do it over and over again. They are a tough breed, and Collin is just as strong as the rest of them.  

 

Still, no matter how hard he struggled with adjustment this year, and with math, because he skipped a grade, he kept pushing and he persevered. He not only passed, he did well. He made friends, and he worked hard. He performed in the solo ensemble competition with his flute, and he did well during his private lessons, even though he complained about them copiously. He even got a medal at solo ensemble! And, he won the Presidential Award for Academic achievement based both on his grades, and his test scores this year. And, to top it all off, he won student of the month, the last week of school. Needless to say, I have been proud as punch of my baby these past few weeks. Well, I’ve been prouder than usual.  

 

If this isn’t all enough, Bryon graduated from the Eisenhower school this week. In fact, he graduated the day after Collin did. It’s been a busy week, I’m telling you. Lots of events this week. If it wasn’t an award ceremony, it was a graduation, for both of them. We’ve been running around a bit, this week! And, it’s all been worth it, to watch my boys be honored in the way they deserve.

 

Bryon is the humblest man I’ve ever met. He refuses to believe that he’ll be honored with any distinction, regardless of how hard he’s worked, or how obviously deserving he appears to be. Based on his grades in the program he was in, it was pretty clear he was going to be a distinguished graduate, an honor that goes to the top 10% of the class. He kept saying, “but I have an A-.”

 

Of course, he was honored as a distinguished graduate. Not only that, was named the distinguished graduate of the entire class. This means that he was named the top graduate of the entire class. That’s my husband, folks. The best. I already knew it, but now everyone acknowledged it…again. I say again, because he seems to get awards like this a lot.

 

Bryon’s graduation ceremony was nearly rained out, so he insisted that I stay home. It turned out to be just muggy and humid. It was held in a tent, where it was sweltering and miserable. I got to watch Bryon walk across the stage from the comfort of my couch, in my jammies, via a live webcast. It was lovely. I truly wanted to go, but when he came home drenched with sweat, I’m glad he insisted that I stay home. It sounded like a terribly uncomfortable experience, especially since the run time was well over two hours, in smaller-than-normal folding chairs and a tent that trapped the humidity.

 

Meanwhile, I’m doing nothing quite as impressive as my men, except waiting for my surgery on Monday, and running errands. To be honest, I feel pretty accomplished when I get through a whole week, getting dressed every day, running all my errands without help, and making all my appointments on my own. I know that sounds like nothing compared to my son and husband, but it’s a big deal to me these days. However, I did get myself all set up to start my Harvard class this week. I am all registered, and I got my book in the mail. I start on June 25th. So, I’m ready to both have my leg broken, and to have my academic ass kicked, both starting in the same week. That’s something, I guess. Right?

My boys playing a card game that my son made up. It’s a Star Wars card game that Collin invented and drew, himself.

My boys playing a card game that my son made up. It’s a Star Wars card game that Collin invented and drew, himself.

 

Doctor Trump Supporter

When I had my measles/random rash scare, I mentioned that my GP doctor is a MDVIP doctor. This basically means that I pay a bunch of money to be treated like I’m his only patient, to get same-day appointments, and to feel like he remembers me when he sees me. It’s actually pretty great. I thought I’d give it a go when I read his positive patient reviews, as a physician, and the reviews of the MDVIP program, in general. I’d definitely continue with this type of doctor, as we move from the area. However, a sticky wicket as come up with my personal provider.

 

He’s a nice man, but he’s definitely a bit…conservative. He’s not conservative in treatment, although he is that, a bit, but it’s his political views that are the real problem. He tends to find a way to bring them up, at almost every appointment. Since even a quick pre-op clearance appointment can take upwards of ninety minutes, he has plenty of time to let his rebel flag fly. He always manages to slip it into conversation as if we are commiserating on the ways of the world like old buddies who have had this chat before, or who obviously agree that both what he has just said is true, and also that we also both agree that pineapple on pizza is disgusting. I think that because he knows Bryon and I are both military, he assumes that we simply must be of the same persuasion, as he opens all of our non-medical conversations with, “how’s the colonel?” (p.s. ugh and eye roll). You’d be surprised how many military folks are both liberal and atheists, by the way. Next time the chaplain does the “mandatory” prayer at an event, take a gander around at the non-head-bowers and share the head nod with the other non-prayers in the crowd, you’ll see.

 

Don’t get me wrong, I’m glad he’s so thorough, as a doctor, even though I have to clear half a day just to see him for a sore throat; but, I could live without him having the time to end up in a lecture about the potential danger of “illegals” killing us all at numbers we haven’t seen since the middle ages, thanks to unchecked entry with diseases like the Bubonic Plague. “Just you wait and see!” At least, that’s what the lecture was about this most recent time that I saw him. I’ve had lectures about everything from illegals, to voting, to speaking only English, and whatever other issue had Trump fired up that week.

 

These are always very awkward conversations, and they set my liberal, bleeding heart, a-flutter. I never know how to respond. Do I tell him that I disagree, and risk my doctor disliking me? Do I find a new doctor? Do I nod in silence and let him think I agree? Saying nothing makes me feel like I need a shower. It’s so confusing. There’s no one at the office to complain to, as his wife is his nurse, and the administrator is their dear friend. That’s it. That’s the staff. There’s no anonymity. When I call to make an appointment, they don’t just know me, they know me. This would generally be a great thing, but for something like this, it’s bad. How do you lodge a complaint about a doctor having somewhat inappropriate conversations with his patients, with the staff, when the staff is his family?  

 

Picture an oldish man. He looks a little like Santa, minus the beard, and a little more jowl-y instead of jolly. He’s a smidge imposing, and he’s got the upper hand in any interaction between us. He’s the one in control of my treatment and care, despite the fact that I’m the one who is supposed to feel in control, as the patient. The dynamic invariably shifts to the one with the most knowledge, and how he feels he will mete it out, in order to allow me to make decisions and draw conclusions. If he feels like I’m not capable of deciding the way of the world, perhaps he feels I won’t understand certain treatment options, or why he will make certain calls regarding my care. Perhaps, he won’t fully explain other options I might have considered, therefore not offering them to me as viable choices.

 

So, these conversations feel more threatening than they should be. This seems like a simple problem. I should just find a new doctor. Or, I should just live with this, and accept the imperfections of an imperfect man. However, neither solution is ideal. Finding a decent general practitioner who takes extended time with my complex conditions, and who has extensive relationships with referring local doctors is difficult. But, accepting, and furthermore, knowing I’m lining the pockets of someone whose views I find abhorrent, is also difficult for me, on a moral level. Ugh.

 

At our last appointment, I needed a Tdap booster, apparently. I mentioned the case of the child in Oregon, who contracted tetanus recently, to the tune of nearly a million dollars in related medical costs, and whose parents still refused the vaccine, despite seeing how ill their kid was. This brought up the aforementioned rant about how “illegals” are bringing in all kinds of diseases, and how the liberal media won’t tell you that they are going to kill us all. He told me that it’s black and white: one side wants more voters and the other side (I assume he meant the “illegals”) wants to come and work for free and get free benefits. I say that assume there, because what “side?” wants that?

 

I didn’t bother to tell him that what he said made no sense for his argument against immigration, because he described two sides of the same racist coin, in his hurry to slur the facts. But, that was neither here nor there. He’s so brainwashed by Fox that I just murmured that I didn’t think it was that simple. That’s all I could get out in defense of helpless humans being belittled in a doctor’s office hundreds of miles away, grouped into swaths of humanity that don’t even register as individuals anymore.

 

There was so much I could’ve said, so many points to bring up. Children being abused in detention facilities, deaths, rapes, families being separated. There are so many successful immigrants that I know, dreamers that have succeeded. There are so many reasons to love immigration and to support the idea that people should come here and have a chance. The dream of America is built on it. But, I didn’t say any of what I believe. And, mostly what I believe is that kindness and human decency should always trump anything else, and that we are treating our fellow man like they are subhuman, which is disgusting and makes me feel sick at night. We’re not only being un-American, we are being bad humans by doing so.

 

One might say that it doesn’t matter who your doctor is as a person, so long as he’s a good doctor. That may well be true. He could be a terrible man, but still be a great doctor. However, when that terrible man brings his terribleness to the job, and forces me to look at it, I have to assess how important that is to how he treats me, as a patient. If he’d left that part of him, at the door, before he came into the exam room, then I wouldn’t be forced to evaluate it as part of his medical persona. But, because he brings it into the room with him, every time we have an interaction, I have to ask myself how kind of a man he is, how sympathetic, how gentle, and how understanding. I have to ask myself if he’s the right doctor for me, overall.

 

Worst of all, when faced directly with this attitude by a man who looks a little like a kindly grandpa, and who is in a position of power, I did nothing. I said nothing. And, I’m ashamed. I’ve started looking at how I can transition to a provider in the same system that maintains all the same records, but is still part of the same provider network. My current doctor is less than a mile from my house, and any new one would be at least a fifteen to twenty-minute drive, but I suppose that’s the price I pay for a cleaner conscience, and for a doctor who can be more professional. I’m hoping it’s a possibility. Starting over with a new doctor is never fun, but in this case, I think it’s important that I at least try. At least I’ll know that I’m not supporting his practice any longer, anyway.

 

The Only Thing Necessary for the Triumph of Evil is that Good Men Do Nothing

 

 

 

Happy Zipperversary Times Two

Most Chiarians who have had decompression celebrate what they call their zipperversary. This is the anniversary of their brain surgery, a momentous occasion, because it undoubtedly changed their life, for better or worse. Either way, it gives you a battle scar, and a badge of honor. Surviving brain surgery is no joke.

 

For me, I’ve got two zipperversaries. One in May 2015, and one in June 2016. So, celebrating them both, roughly mid-point seems good enough. Either way, it’s been 4 years, and three years, respectively, since someone’s poked my brain, removed bits of my skull and spine, and in one case, drilled some titanium into my head. It sounds so…horrible.

 

I still can’t look at images of patients in position for my surgeries, because it sends me into cold sweats, or straight panic attacks. Chiari surgery is performed with the patient face down, bolted to the table. BOLTED to the damn table. Just that thought makes me shiver. I was BOLTED to a table. My body, my head, was bolted to a table. I know this, because I had bolt scabs for days, both times, when I woke up. I touched them obsessively. For some reason, this little item always skeeved me out the most, knowing that I was treated like a piece of wood you needed to keep still, in a vice.  

 

The second surgery saved my life. If I’m honest, I’d probably have eventually killed myself. Living in the state of pain I’d been left in, and in the state of rapid deterioration, I’m not sure how long I could’ve held out. If not that, I’m not sure how long the rest of my body could’ve held out. I was already on massive amounts of pain killers, just to survive, and my brain was mush. People underestimate what happens to your brain when you are on doses that high. You lose yourself. You become depressed, stop making rational decisions, and you forget time, space, and all sense of logic. Who can last forever like that? I was being treated as if I were a cancer patient, in her last days. There are months of that period that I have no memory of.

There was once a time that my jaw was so painful, on a regular basis, because of referred pain from my skull, that I would use ANYTHING handy, to put pressure on it, including the pain pill bottle that I was never far from…as I counted the minutes till I could have my next dose, desperate for relief.

There was once a time that my jaw was so painful, on a regular basis, because of referred pain from my skull, that I would use ANYTHING handy, to put pressure on it, including the pain pill bottle that I was never far from…as I counted the minutes till I could have my next dose, desperate for relief.

Celebrating these milestones is a strange thing. It’s double-edged. You recall that you survived and endured, and you remember that you overcame; yet, you also sit and remember that it means you are sick, and you were once sicker. It’s a weird dissonance. Recalling getting out of my hospital bed at Walter Reed in 2015, being forced to walk, to prove to the nurses that I didn’t have spinal damage, was terrifying. The fear that I might not be able to, is a memory that is part of my very core, because it wasn’t a “maybe,” it was a realistic possibility. The uncertainty of what was broken, what was going to heal, and what wasn’t, was very scary.

 

Now though, I know the extent of my “damage.” I’m healed, as healed as I’ll ever be, really. In fact, my UCLA neurosurgeons just reviewed my latest MRIs and reassured me that I wasn’t having new Chiari symptoms and headaches, and that my plate still looks great. My new headaches are because my neck, having been diced in half twice, is fucked up. It will only continue to get worse, over time. This happens with a spine that is weakened by surgery, and with muscles that have been hacked apart. But, I can feel “safe,” that it’s not my skull or brain. Phew. The point is that I will periodically fall apart, here or there, but I will likely be “fine,” from here on out…. probably. That’s what my annual MRIs are for.

 

Hello C-Collar my old friend. I hate to see you again. Truth be told, I need you more often than I let on. If I wore you more often, I’d have less pain. But, I hate you so much that I let you gather dust in the closet. You are uncomfortable. You are hot. You make it hard to see stuff because I have to turn my whole body. And, you are a flashing light for people to stare at you, in public. In short, I hate you and you are evil.

Hello C-Collar my old friend. I hate to see you again. Truth be told, I need you more often than I let on. If I wore you more often, I’d have less pain. But, I hate you so much that I let you gather dust in the closet. You are uncomfortable. You are hot. You make it hard to see stuff because I have to turn my whole body. And, you are a flashing light for people to stare at you, in public. In short, I hate you and you are evil.

So, I celebrate. I remember. I monitor. I remain vigilant. I remember that I’m the healthiest version of a sick person that I can be. I solider on.

 

This year, to mark the occasion, I go under the knife again with another major surgery. This time, I am having my Fulkerson Osteotomy on June 17th. It’s a ridiculous procedure that I think was invented in the middle ages, and hasn’t been modified since. It involves breaking my leg, installing some bolts, fully flipping my knee cap, and moving all my ligaments. As a bonus for all this torture, I get an entire new sheet (is that what it’s called?) of cartilage under my knee cap, grown and cloned from my very own cells.

 

It should take a full year to heal, so I’m super stoked for this. Supposedly, this was preferable to a knee replacement. I am trusting my doctor who basically told me that my knee was a disaster and he wasn’t sure how I was walking. Since it currently dislocates roughly 4-5 times a week, I’m ready for either this surgery, or an amputation.

I used to spend A LOT more time horizontal. The only thing I miss about this is that my kitties and I used to snuggle pretty close during these times. Poor Little Willow was a pretty good snuggler.

I used to spend A LOT more time horizontal. The only thing I miss about this is that my kitties and I used to snuggle pretty close during these times. Poor Little Willow was a pretty good snuggler.

 The cool part, at least I think so, is that I’m like a celebrity at my local Physical Therapist’s office, because although I go there for shoulder work right now (remember that surgery too – I’m a disaster), they all know the Fulkerson is coming. It’s a relatively rare procedure, both because most people’s knees aren’t fucked up enough to need it, and because when they are, many people choose to live with the pain, rather than face the terrifying operation. However, the PT is kind of specialized, so they are really excited about it. Plus, they are crazy excited to see how the cloned cartilage works out, because this part is even more rare.

 

This must be what it feels like to be popular. It’s the same feeling I get when I go to my tailor and she compliments both my clothes and me, every time. She always tells me that I look pretty. Honestly, I pay a little more (I think) to go to her, just because she compliments me. I’m such a sucker for positive attention. Praise me! Someone once asked me why I enjoy education and school so much, and I said, “because that’s the place where you get A’s.” I thought it was a stupid question. I think this sums me up, in a nutshell.

 

Anyway, it’s awesome to look back and remember that I was once sicker. I once thought I wouldn’t make it until the morning, leaning over and begging Bryon to tell Collin I loved him. I once thought I might not be able to read for comprehension again. I once thought I’d have to use my cane, forever. I once thought that I wouldn’t survive surgery. I once thought I’d be on Fentanyl until I died…then, I thought Fentanyl withdrawal would kill me (don’t start Fentanyl, kids). But, it all gets better, at least a little. Look at me now, starting Harvard in less than a month!

 

I’m still slower than I used to be. I’m still racking up surgeries like I’m collecting hospital bands, or cats (which I am). I’m still in therapy for PTSD, depression and anxiety. I still have memory issues and pain problems. I still have days where my body forces me to just…. sit. I still have more health problems than anyone would care to listen to, and I would care to list. But, I get up, every day, and try. I’m alive to do it. That’s what a zipperversary is really all about, that you lived to fight another day.

 

So, if I’ve got any fellow Chiarians reading this, keep trying. Keep fighting. It isn’t sunshine and rainbows with unicorns farting glitter, on the other side. It’s going to suck, some days. Some days it’s going to be terrible. But, the days that it isn’t, it’s pretty great. Hang in there. It can be maddening to read stories of post-op patients who run marathons after they heal, or who climb Mt Kilimanjaro, or become astrophysicists; but they are freaks of nature, or liars. Do you. Your Mt Kilimanjaro might just be to get dressed today, and that’s just fine!

Measles...Or Not

Speaking of hypochondria…


You know how it seems like we are living like pioneers in 1857, thanks to the measles outbreak(s) brought on by kooky anti-vaxxers and their fear of survival? According to the CDC, there have already been 764 reported cases of measles this year. This is more than double last year’s total cases, and more than six times the cases in 2017. This year, there have been public health notices regarding measles outbreaks in Los Angeles County, Brooklyn, Washington, New York City, Texas, Illinois, and Rockland County (New York).


I am immunized because I got all my shots as a kid, and because I was in the military. When you in-process, you line up with all your fellow new airmen and wait for a slightly senior-to-you airman to push up your sleeve up and give you approximately 97 shots at once, regardless of your vaccination history. Your arm hurts for, what seems like, weeks, probably because you are concurrently doing endless push-ups and pull-ups on those same arms. I’m pretty sure it’s just the tetanus shot that hurts, but it seems like they all hurt.

 

These new measles cases mean that adults are panicking about their decades-old shots and whether or not they need to be covered with new boosters. If you were born after 1989, you probably had two doses of the measles vaccine, which is approximately 97% effective at preventing measles, versus the single dose MMR (measles, mumps and rubella) vaccine used as far back as the 50s, which was still very effective (93%), but slightly less so. The only way for adults to tell, at this point, whether or not they fall into that “almost” covered, or not covered at all between 93%, 97% or 0%, is to get their titers checked. This is as simple as getting their blood drawn to find out if they have any antibodies that say, “yep, I’m protected from the measles.”

 

All of this measles talk has a purpose, I promise.

 

I was born before 1989, and I was in the military. So, logically, I’m covered for the measles, right? Duh. I have had my measles vaccines. In fact, I have been vaccinated twice over, by anyone’s standards. According to the anti-vaxx crowd, I should either be dead, have super-autism, or be glowing with toxic radiation. That’s how it works, right? Either way, I have no reason to assume I have the measles.  

 

Still, when I got a weird rash on my face last week, that’s precisely what I did. To be fair, I didn’t assume measles…at first. I waited several days before I freaked out. And, I kept the freak out factor very minimum. In fact, I tried to go to my primary care doctor, super casual-like. “Hey man, I’ve got this rash, can I come in? Super chill. No big deal. In fact, let’s forget the rash, let’s just get some burgers and milkshakes. I’m cool, I’m casual. I’m breezy.”


I only showed up at Urgent Care because he’s at a conference at Johns Hopkins, for the next THREE FREAKING WEEKS, and I had no choice. He’s still out of the office, actually.

 

I was, frankly, pretty annoyed at him. Not sure if you’ve heard of this new MDVIP thing; but, it’s basically concierge medical care. A lot of doctors cut their patient load down to a few hundred (or fewer) patients, which is great for you, as a patient; however, you pay a yearly fee to enroll in the practice. It works out for the doctor, too, as they work with less insurance red-tape, make a higher profit (the high enrollment fee is cash only), plus they get to practice medicine the way they want to. It makes for pretty personalized care, and a wonderful patient experience. It’s not cheap go to a MDVIP provider, and he was gone for THREE WEEKS, during a “measles” crisis on my face.

 

I digress. I suppose I can forgive him. He’s been there for me at minutes’ notice when I’ve had the flu, a UTI, and a kidney stone, in the past, so fake measles can be forgiven…this time! He’s a great doctor, and always thorough. He’s often too thorough. You can never get out of there in less than thirty to forty minutes, even for a “quick” appointment, and not for waiting, for the appointment.

 

Anyway, back to this rash on my face. It was weird, red splotchy spots that had popped up out of nowhere all over my face, primarily on my right cheek. I’d not had contact with anything new, not eaten anything new, not worn anything new, not used a new soap, nothing. They kind of itched, but not really. They felt raw when I touched them. They were spreading, and they were ugly. The ugliness was my primary concern, of course.

It’s almost embarrassing to show you all this picture because it barely shows the rash, here. But, this is the" “best” picture I have of it. Half of my face is covered by sunglasses, and half of my spots aren’t visible. Overall, it’s a pretty dumb shot to “show off” a rash. But, here it is. And, it’s a HIDEOUS picture of me. It’s probably not the ugliest picture I’ve ever posted here, but it’s still not great! But, you get the idea of what some of the spots looked like.

It’s almost embarrassing to show you all this picture because it barely shows the rash, here. But, this is the" “best” picture I have of it. Half of my face is covered by sunglasses, and half of my spots aren’t visible. Overall, it’s a pretty dumb shot to “show off” a rash. But, here it is. And, it’s a HIDEOUS picture of me. It’s probably not the ugliest picture I’ve ever posted here, but it’s still not great! But, you get the idea of what some of the spots looked like.

 

 At first, I thought they were pimples and that I was having a hideously bad acne breakout. Because I am blessed with normally clear skin, with the exception of pimples that come in singles here or there, I was pretty annoyed to have a baker’s dozen arrive on my face all at once. Still, I slept with those awesome pimple patches on all of the spots, thinking I’d wake up with lots of goopy stickers to peel off in the morning. Nope. All the stickers came off clean, and the spots were just as red and hideous. So, I was annoyed that I’d wasted a ton of those stickers. Plus, there were even more red spots. Hmmm….and grrrrr.

 

In the back of my mind, I thought they looked measle-y, but I knew it couldn’t be, because I’d had my vaccines; however, measles starts on the face as flat, red spots. Check. Logic be damned when you’re a hypochondriac. I posted my rash, now several days old, on FB and one of my friends immediately said measles. Really, I just wanted someone to say, “poison ivy,” or, “leprosy.” Really, anything other than confirming what I was already thinking.

 

This was moments before I went in to a physical therapy appointment for my ridiculous shoulder that is still bothering me. My physical therapist, of course noticed my rashy face. There’s nothing like brining a potentially contagious rash into a medical building where they treat dozens of patients, many of them elderly, a day. You feel like a criminal. Only instead of assaulting the elderly directly, I was potentially leaving behind a microbe to do my dirty work. When she asked what it was, I was forced to tell her I didn’t know. But, of course, she said it looked a little like measles. I explained it couldn’t be, that I was vaccinated, which made her more comfortable, and that I was going to get it checked anyway, which put her even more at ease.

 

So, I went to urgent care….

 

This is how check in went:

 

I’m perfectly healthy, energetic and happy, as I approach the counter. I tell the check-in woman that I’m probably fine, but if I’m not, perhaps I should sit somewhere away from others because I’m concerned the rash on my face is measles. The woman behind the desk looks up at me, looks at my face, smiles at me, and tells me to take a seat. She removes the pen that I used to sign in with from the cup on the counter, throws it away, and then sanitizes her hands, wipes the counter with bleach and wipes her keyboard. Yep. I feel great, so far. The waiting room is empty, except for a single person, so I sit all the way on the other side of the room.

 

Moments later, a nurse comes out to get me, wearing a face mask and gloves. She was excessively kind and apologetic for being so overly cautious, and said that she hoped I understood the precautions. Of course, I did! She got me to a room, checked me in and took a look at my face. From her assessment, she said it was hard to tell, but it looked like…hmmm…maybe? In other words, she didn’t know. So, she obviously wanted to wait for the doctor. What she did want me to know was that she was so happy that I came to the clinic and that she wished more people came to check on rashes they didn’t know about because it would help stop spread these outbreaks. This left me wondering what other rashes cause outbreaks, other than measles? Meanwhile, I was apologizing profusely for wasting everyone’s time and for being so ridiculous for coming in, in the first place. All I could think of, was becoming patient zero in Northing Virginia.

 

Next, a PA comes in, introduces herself, gloves up, and puts a mask on. She also apologizes for the precaution and congratulates me on potentially stopping a measles outbreak in its tracks. I am starting to feel like a god damn hero for visiting Urgent Care, instead of like a weirdo with a face rash. She spends about five minutes examining my face, which, trust me, is a long time to have someone centimeters from you face, poking it, shining a light on it, and staring directly at each spot. The end result of her exam was that she just…wasn’t…sure. She thinks that it’s probably not, but she doesn’t want to make the final ruling without a doctor to sign off on it. Just in case.

 

By the way, there’s nothing like a woman with a light squinting right at your face, quizzically saying, “Gosh, I just don’t know…what IS that?” while poking your cheek, as if she’s poking at a piece of rotten meat. It makes you feel just, I don’t know, pretty? Is pretty the right word? Gorgeous?

 

So, that’s two people who are maybe thinking it’s not measles, but they can’t 100% be sure that it’s not, so they need a third party to rule it out for certain. So, now I’m wondering, if it’s not measles, what the hell kind of rash do I have? What did I get into that’s so insanely unique that no one can even identify it?

 

The doctor comes in, this time not covered, not masked, and not gloved. He was also very nice, and congratulated me on being responsible enough to take seriously how contagious I might be to others. I was wondering if, at some point, the entire clinic might be secretly planning a party, or perhaps a parade for me? It really made me feel much better about going in for something so silly, to have everyone be so nice to me. Anyway, he examined me pretty closely as well, and determined it was “just a rash.”

 

His assessment was that it’s basically a “who the hell knows?” kind of thing. He didn’t say that, but that’s my description. I could’ve come in contact with anything, at any time, and been allergic to it. Even with steroids and steroid cream, it still took another week for it to clear up, so whatever it was, I was obviously having quite a reaction to it! He said it definitely looked very similar measles, so there was certainly a reason to feel a little concerned. However, measles tends to start more towards the hairline, and not the cheeks. The more you know, I suppose!

 

He said it might’ve been poison oak or poison ivy. It made me remember that I had, indeed, been rubbing my face in the lawn when I was gardening a few days prior. I was weeding our raised veggie and flower beds, and to take a break, I put my face all over the grass. No wait, dogs do that. So, no, I have no idea what caused the rash. It was just there. And now, it’s gone. And, it wasn’t measles. Of course.

 

So, my hypochondria sent me to urgent care for a disease that deep down I knew I didn’t have, which I was later told I didn’t have. And, all ended well. OH! I forgot the part which Bryon even agreed that it was a good idea to get checked. He was a hypochondria supporter, at least in this case. He, like me, said, “you probably don’t have it, but yeah, get checked. Not a bad idea.” Meanwhile, he was at home, texting me what he was Googling, which was that I didn’t have a fever, and all the CDC reported cases by state. He didn’t feel 100% sure that I was “safe” until he saw that there were no reported cases in Virginia yet, this year. I always know when Bryon is worried, even 1% worried, by his texts, or what he Googles or looks up. He was just a smidge concerned, just like me. A smidge counts. Hope my hypochondria isn’t rubbing off on him!

Medical Diagnosis: The Odyssey

My body is weird. I don’t say that in a “I hate my body” kind of way. Don’t get me wrong, I hate my body in all kinds of womanly ways. I hate when I get constipated and my stretchy baby bucket allows my woman pooch to fill up and look like I have a poop baby, gestating to about six months, instead of just a little bloat. I hate that I my boobs are too small, and I hate that I still get acne breakouts. I hate that I have enough cellulite, that a few months ago, Collin, who still follows me to the bathroom asked me, “Mommy, why is your butt skin bumpy and mine isn’t.”

 

But, that isn’t what I mean. I mean that my body behaves weirdly, which makes medical diagnoses difficult, time consuming, and frustrating. There’s a theory, in the medical community, that when you hear hoofbeats, think horses, not zebras. For me, it’s always the zebra, or maybe an emu, or even an ostrich who identifies as a horse, wearing horseshoes.

I don’t have any pictures of horses, ostriches or zebras, but we call Loki, Bear. So, here’s a picture of a Bear.

I don’t have any pictures of horses, ostriches or zebras, but we call Loki, Bear. So, here’s a picture of a Bear.

 

On television, we see doctors like Dr. House, who get a mysterious patient, hone in, and refuse to let go, until they reach a solution. In reality, someone like me, who presents with a wild array of insane symptoms, even one with an already bizarre diagnosis, which may complement the bizarre array of symptoms, and even be a part of the list itself, is shuffled around to an ever-growing list of specialists to find not one diagnosis to tie them together, but a laundry list of them.

 

It’s a game of hand-off, pass the patient. It makes the patient (me) start to wonder if they are crazy. Am I sick? Is there actually anything wrong with me? Maybe this is all in my head? If Doctor A couldn’t figure it out, maybe it’s because there’s nothing there, and I’m actually fine. Am I just a hypochondriac?

 

Then, I remember that Doctor A did find something. He found lots of things; he just isn’t the right doctor to deal with the stuff he found. Medicine, these days, is so compartmentalized and specialized. It’s out of his area of expertise, and the stuff he found was scary. It was so scary, he was worried and insisted I see Doctor B. But, the tests Doctor B ran, ones he was sure would present a positive diagnosis, didn’t; but, they turned up something out of his area of expertise, and now I have to go to Doctor C. And on and on it goes. Now, I am all the way to Doctor Q, and I am tired.

 

Side Note: is Doctor Q a cool villain name, or what?

 

Eventually, I question if I am a not only a hypochondriac, but if I am such a hypochondriac, that I am being a hypochondriac about being a hypochondriac. How meta is that? I am constantly asking doctors if all this is necessary. I am constantly pressing them whether this is crazy; couldn’t I just be fine?

 

Can you imagine being my therapist? She’s paid well.

 

In the past eighteen months, here’s just a sampling my saga:

 

Cardiology

I pass out sometimes, for no reason. I just, poof, go down. Imagine lying on the couch with your head hanging over the side, then quickly standing. For me, just sitting normally gives me that feeling when I stand. I also pass out if I’ve had a bad headache. I’ve never worried about it. I always wake up, right?

 

My primary care physician felt otherwise, at my annual physical, when she took my blood pressure, and it presented as approximately low enough to be dead. Meh, it’s always low. I wasn’t concerned. So, I mentioned the “spells.” She made me do the sitting, standing, lying down blood pressure tests, and they changed dramatically, so she shuffled me off to cardiology for several other tests.

 

All signs pointed to a POTS (Postural Orthostatic Tachycardia) diagnosis, not uncommonly comorbid with Chiari.

 

Then, I had a tilt table test, which is the gold standard for diagnosing POTS. They strap you to a mechanized table, that tilts up and down, to see how long it takes to make you pass out. Only medical test I know of that’s basically an amusement park ride. Because they used this table so rarely, at the hospital I went to, the table barely worked; so, I passed (not out) with flying colors. Instead of it “tilting,” to any degree of speed, it moved at the rate of a 103-year-old woman standing up and down.

 

This left the cardiologist scratching her head, and she basically said, “whelp, for all intents and purposes, I’d have diagnosed you with POTS except for the tilt table test.” In other words: Dunno? Looks like a duck, quacks like a duck; but seems like it might be a whale? So, POTS-ish?

 

Hepatology

Did you know that a hepatologist is a liver, gall bladder and pancreas doctor? I do. I know this because I have a hepatologist. I also know my liver’s soft/hard value, because it’s been tested. This is bizarre and seems like something that a chronic drinker should know. I’ve had approximately three glasses of champagne in my entire life.

 

For as long as I can remember, doctors and nurses have said, in passing, after blood draws, “oh, your liver number is elevated,” or, “hmmm, everything looks great, but your alk phos (as if I know what that is) is a little off, probably nothing.” Again, my primary care physician, being ever diligent, noticed a pattern in those pesky numbers. Turns out they are always off. Turns out my liver is a weird-o. Turns out whatever day the random doctor noticed the numbers wasn’t a fluke; it’s consistent.

 

What no one knows is why it’s off, or what to do about it. Liver issues are noted with alcohol, or with obesity. They aren’t noted in thin, vegans who don’t drink. There are a few autoimmune diseases that cause liver disease; I tested negative for all of them. So, I have idiopathic fatty liver; but he isn’t sure I even have fatty liver. At this point, he is just guessing.

 

But, the values of my labs are so off, I have to continuously provide blood to monitor them. The good thing is it’s being watched. The bad thing is that I feel like a time bomb, waiting for my liver to randomly need a replacement. I know it doesn’t really work that way, but it feels that way. Mostly, I think it feels that way because my doctor is in the Georgetown Liver Transplant Center, and his waiting room plays, on a loop, a video about liver transplants. It’s unnerving.

 

Thanks, vital organ, for being weird and janky.

Doctors, doctors, doctors! I think this must’ve been my orthopedist’s office that I felt the need to photograph and save for posterity. Flattering, no? Nothing says sexy like paper shorts and crew socks. They really shorten the leg and make you look like a troll. On a positive note, I’ve not shaved my legs in over a year! Look at that!! You can’t even tell. I have been blessed in very small ways.

Doctors, doctors, doctors! I think this must’ve been my orthopedist’s office that I felt the need to photograph and save for posterity. Flattering, no? Nothing says sexy like paper shorts and crew socks. They really shorten the leg and make you look like a troll. On a positive note, I’ve not shaved my legs in over a year! Look at that!! You can’t even tell. I have been blessed in very small ways.

 

Rheumatology

I did NOT want to go to rheumatology. I felt like it would be a rabbit hole. My pain doctor in California begged me to go for the three years, insisting that my joint deterioration, swelling, and even some of my other body symptoms were all connected. He was sure I was suffering from an autoimmune disease, and that I could be so easily helped, if only I could get a diagnosis that would tie everything together. After a particularly rough week of exhaustion so bad that I could barely move, I thought that surely no normal person is ever this tired, I finally made an appointment.

 

I have been tested for everything under the sun; but, my doctor was almost positive that I have Sjogren’s. It fit with all my symptoms. I am practically the poster child for it. For once, at my next dentist appointment, I’d have no shame about the inevitable new cavities. I would be able tell him that I have Sjogren’s and no matter how much I brush, floss and rinse, it’s almost impossible to battle the crippling dry mouth. I have virtually no saliva, cavities are going to grow. Not that Sjogren’s is just about dry mouth, but since it’s one of the things that’s most annoying, it came to mind.

 

I did find a solution that I particularly like for dry mouth though. If anyone out there has dry mouth from Sjogren’s, or from any meds that you are on, try these! I can’t find them in a store anywhere, you have to order them directly from the company’s web site. My dentist recommended them; they are amazing. It’s not too much to say that they have, literally, changed my life. Better than any rinse, strip, toothpaste, or anything out there. Best thing I’ve ever tried for dry mouth!

 

Alas, Sjogren’s doesn’t have a single test. It’s a diagnosis based on patient history and a few other tests that “help” make a diagnosis. I was negative for the ones that “help.” The test they consider the “gold standard,” is a lip biopsy. We all know how fun that was, based on my last post. I forgot to mention that I was so nervous to get the damn thing done that Bryon came with me, and was leaning over the chair hugging me when the doctor came in to start. The hug looked so awkward based on the chair’s position, that it looked like we were in a rather “delicate” position. The doctor and nurse, literally excused themselves as if we should have our privacy! So embarrassing! When we told Collin the story, he said,

 

“The doctor thought you were humping!”

 

My son, ladies and gentlemen.

 

He’s cute though, right? No, this wasn’t taken at Christmastime. He just wears his holiday pajamas all the time. Who wouldn’t? They are awesome!

He’s cute though, right? No, this wasn’t taken at Christmastime. He just wears his holiday pajamas all the time. Who wouldn’t? They are awesome!

My appointment to go over this negative result is in a few weeks; but, I expect the same type of conversation that we’ve already been having, an echo chamber of what I hear from my other doctors, really: there’s a ton of stuff we are finding in your imaging, tests, and in your blood, but it’s not matching with the predictions we’re making….you have something, I just don’t know what.

 

It’s so unhelpful and makes me so confused and frustrated. It’s always the same story: I have all the symptoms, I have almost all the positive test results, and then poof, I’m negative for something, and it’s very confusing to everyone. But then, alas, I’m positive for something else.

 

Today, I am declaring myself my own disease. I have Rachel. Since Rachel is incurable, there’s no point looking for that. Not to fear, it’s not lethal. However, symptoms are alleviated by her wonderful family (duh), presents purchased from Anthropolgie, Jonny Was, Frye, and especially from Tiffany’s. Symptoms are also reduced by spending time in California with loved ones, and by jolly kittens. They have to be jolly, otherwise the whole thing’s off. Other salves are relaxation with good books, painting, and creativity. Exacerbation of symptoms can be caused by traffic, people who don’t turn their phone volume down in waiting rooms, and anyone who won’t shut up about Game of Thrones.

 

I know that Homer doesn’t look “jolly” here, but he was sound asleep, so he let me tuck a little blanket around him; and he looked so darn precious! I’ve said before that I embrace my crazy cat lady. I feel no shame.

I know that Homer doesn’t look “jolly” here, but he was sound asleep, so he let me tuck a little blanket around him; and he looked so darn precious! I’ve said before that I embrace my crazy cat lady. I feel no shame.

Four Month Update

When I first got sick, I immersed myself into the online world of Chiari groups. I didn’t so much chat and comment, as lurk, absorbing fear and paranoia about what was going to happen to me, based on the terror stories that I was reading. Then, one day a person said something profound: there are no happy success stories here because healthy people don’t sit around all day and bemoan their lives; they are out living them.

 

Duh.

 

It made me less afraid. For about ten seconds. It worked as a mantra that I had to repeat, steadily to myself, like a tattoo, but it consistently does work in the short term. Mostly because there are real horrors with any illness. Specifically, with Chiari, people die in surgery, they die of aneurysms, strokes, brain swelling, meningitis, infections, or any other weird brain crap (that’s the scientific term).

 

But, they also die of pain medication. They die because of lack of pain medication through uncontrolled and untreated pain, committing suicide in desperate agony. Even the CDC has admitted their misapplication of regulations in opiate dispensations, causing untold consequences ranging from patient abandonment, withdrawal, and even death. Of course, Chiari patients can die from overdose too, both from accidental overdose in a misguided attempt to control pain, and from addiction.  

 

However, one of the most insidious ways that Chiari can kill patients like me is crippling depression. It’s no secret that I battle this particular war.

 

Again. Duh.

 

Hopefully, that serves as an explanation of my constant blips of absence. I have been off and on depressed. It’s difficult to climb out of it. Constantly. It’s a battle of daily and epic proportions. It could be made easier through many avenues, such as medication and therapy. I hate the medications; but I did recently go back to therapy. The medications make my mouth dry and they are always so hard to get right. And, getting to know your therapist takes a while before you make any real progress.

 

Anyway, I thought I’d try to keep up a bit better (I know I’ve promised that before; but, we’ll see). In an attempt to catch us all up, I figured I’d list-form a bunch of random updates on my health and life, otherwise you’d have to read a dissertation:

 

In June two exciting things will occur: I start my pre-requisite courses for an MFA in Creative Writing at Mother-Fucking Harvard! This is one of the reasons I thought I’d try to catch up and stay on top of this. I have to get the “crazy” out. So, to my Grandma, who always said, “you should write a short story about that,” and to all my colleagues and friends who always told me to write a book: I’m trying! Get off my back! Thanks be to the VA and the GI Bill that I have remaining from my first MA. Who knew that my stint in the AF would net me two master’s degrees, a husband and a kid? Pretty sweet deal.

 

Also, in June, I’m having stage two of a terrifying surgery: a Fulkerson Osteotomy. My orthopaedist (what a pointless, and I think, pretentious, “a” right?) already harvested the miniscule three cells (no joking) of cartilage I had left, to clone in a lab, creating a new sheet of brand-new knee cushion, to replace the 99.999% missing cartilage under my knee cap. In June, he will break my shin bone, lift up my knee cap, put down my new cartilage, re-align my misaligned knee cap, and bolt it down to my newly broken leg, in its correct position. Supposedly, this is better than a knee replacement because I still have “good bone” left. I was able to be convinced of this because I’m clinically insane. However, after stage one (the harvesting), at which point it was too late to convert to a replacement, the doctor said, and I quote, “phew, once I got in there, your knee was quite a mess…worse than I thought…a pot-hole even.” Thanks. Really. Thanks.  

 

Because of my ridiculously crumbling joints (neck, shoulders, knees…and toes?) and several other symptoms that seem lame to discuss, pain management wanted me to see a rheumatologist. Yay! More doctors! I finally went, a year later. Now, I get to go to labs, constantly, and give lots of blood. Last week, I got to go to an ENT and give a lip biopsy. I have had two stitches INSIDE my mouth for the better part of a week. Did you know that’s the worst feeling, literally ever!?


How’s that for a hideous picture? Trust me, it feels even worse than it looks! I ended up in Urgent Care five days later for the stitch I didn’t swallow (yep, that means I accidentally bit one of them out). It was so painful, I thought it was infected. It wasn’t, but it was really icky. They trimmed it and tried to pull it out. It did NOT go well.

How’s that for a hideous picture? Trust me, it feels even worse than it looks! I ended up in Urgent Care five days later for the stitch I didn’t swallow (yep, that means I accidentally bit one of them out). It was so painful, I thought it was infected. It wasn’t, but it was really icky. They trimmed it and tried to pull it out. It did NOT go well.

 

Speaking of stitches inside my mouth, I have now experienced what it feels like to attempt to remove a stitch from INSIDE my mouth, without Novacaine. I have also experienced what it feels like to be the loudest screamer in the Urgent Care clinic, and what it feels like to cry without realizing it, only feeling the tears on your cheeks, after they sit you up. As a side note, after digging for several minutes, they did NOT get the stitch out because I had to tap out. I feel no shame in this. Lots of blood vessels and nerve endings inside the lip.

 

I had the world’s worst colonoscopy, which would’ve made a wonderful long story, but I’ll give you short details. Mean nurse treated me like a drug addict and actually pushed me into a wheelchair! I broke my toe (for real!) running to the bathroom during the prep, as only I could, by stubbing it on the molding separating the hall from the bathroom. And, the endoscopy scope gave me a fat lip that lasted almost a week.

My fat lip from my endoscopy. Also from my endoscopy: I learned that my “heartburn” has been so chronic, and so bad, that I’ve essentially torn several small holes in the upper part of my tummy/lower part of my food tube. That’s what I’m calling it.

My fat lip from my endoscopy. Also from my endoscopy: I learned that my “heartburn” has been so chronic, and so bad, that I’ve essentially torn several small holes in the upper part of my tummy/lower part of my food tube. That’s what I’m calling it.

 

I’m starting back up with Neurosurgery again. I’m scared so shitless that I can’t even put it into words. I was so afraid that I didn’t even bring the pain up to my pain doctor for almost two months. And then, I brought it up as “neck pain,” not even the pain I knew it was. Of course, the muscle relaxers didn’t work. Thankfully, she ordered an MRI anyway, and my record is now updated, and sent to UCLA. Probably nothing? Who knows? All I can think about is what if I have to do this, every three years?

Mew has re-named himself (his real name is Thor, but he prefers to be called Mew, as evidenced by his constant, incessant shouting of this word). He also begs to be cuddled, nuzzled and kissed, which makes it hard to dislike him, despite his encouraging Homer to pee on the floor.

Mew has re-named himself (his real name is Thor, but he prefers to be called Mew, as evidenced by his constant, incessant shouting of this word). He also begs to be cuddled, nuzzled and kissed, which makes it hard to dislike him, despite his encouraging Homer to pee on the floor.

 Remember Mr. New Kitty? He’s not adjusting awesomely. Well, he’s okay, but since he’s been added to our family, Homer’s decided to pee outside the litter box, almost exclusively. Since Homer is 18 years old, he’s developed mild renal disease, which means he drinks a lot of water, consequently, he pees in large volume. This means our house smells vaguely of cat urine, all the time, despite constant cleaning. Behaviorally, we’ve done all the things, you’re supposed to do to eliminate this problem; so, we’ve got five litter boxes, on three floors, surrounded by puppy pads. Our house is a class establishment. In unrelated news, if you want a cat, we’ve got one available. Not Homer; he’s too awesome. The other one.  

Homer says that he disagrees with Mew’s presence, and wishes to remind everyone that he is between 88-92 years old, and he shouldn’t have to tolerate whipper-snappers, at his age. He also wishes to remind everyone that he was here first and to kindly fuck off.

Homer says that he disagrees with Mew’s presence, and wishes to remind everyone that he is between 88-92 years old, and he shouldn’t have to tolerate whipper-snappers, at his age. He also wishes to remind everyone that he was here first and to kindly fuck off.

 Bryon got promoted two below the zone to Colonel. This was huge news to us, but left us questioning where we would be living next year. Military families always are tight-rope walking with moves in the balance; but with colonels, it’s a whole new ball game. We had only just gotten to DC last summer and we were barely established. We just found out that we’ll be here two more years though, so we are a little relieved to be able to settle down some roots, despite it not being California. Collin will get to go to middle school with the same IEP, and I can at least maintain doctors for a little while, and not have to move eight weeks after major leg surgery. Phew.

 

By the way, these items are in no particular order…cat piss is, in no way, more important than my husband’s perpetual trek towards General Officer (one day, dammit!). Oh, and he may make it, and be all fancy and shiny, but if I make it through Harvard, I am just a shiny and important! Right?

 

Before the first stage of my knee surgery, I decided, on a whim, I wanted to be independent, and do something I always wanted to do, by myself. In other words, I briefly lost my mind, booked a hotel room, and mapped a drive to Philadelphia to go to the Mutter Museum. No one in my family wanted to go to this museum of death; so, I figured I’d go alone. For any true crime fan, like me, or person who is not easily grossed out, like me, it’s a glorious place.

The only picture that you are allowed to take at the Mutter Museum. No photos are allowed beyond this point. Collin felt like he should pose in this ridiculous manner. This is  before  he threw up, by the way. Well, well, well before. And, for those who are wondering, I handled his vomit with aplomb and good parenting. I didn’t run away, or scream, or anything. I was awesome, considering how much I hate vomit.

The only picture that you are allowed to take at the Mutter Museum. No photos are allowed beyond this point. Collin felt like he should pose in this ridiculous manner. This is before he threw up, by the way. Well, well, well before. And, for those who are wondering, I handled his vomit with aplomb and good parenting. I didn’t run away, or scream, or anything. I was awesome, considering how much I hate vomit.


However, true to my personality, I freaked the night before, and Bryon and Collin came along. Bryon had homework, and stayed at the hotel. Collin threw up. It should be noted that it was delayed car-sickness that made him barf, not that he was disgusted by desiccated penises (penii?) We also saw the Liberty Bell, and some other American blah-blah, and ate at the best Asian, but fully Vegan restaurant, I’ve ever been to. It was glorious, overall.

This memorializes the single moment that Collin wasn’t asking for something, such as food, a trinket, or other such item. It was the best moment of the trip.

This memorializes the single moment that Collin wasn’t asking for something, such as food, a trinket, or other such item. It was the best moment of the trip.

 

I know I gave up teaching in the classroom last semester; but, this semester, I quit entirely. It’s a done deal for me, I think. I don’t enjoy teaching online, and we can survive without the income. It’s often hard for me to grade in a timely manner because of depression, headaches or pain; so, it’s not fair to the students for me to go on. It was time. It makes me afraid to take on a new commitment like school, but I’m hoping that because it’s something I enjoy, it’ll be great!

 

Speaking of things I enjoy, shhhh, I have a creative project that I’m being quiet about. Only Bryon really knows the “topic,” but I do have a book idea. I’ve been reading lots of research material about it, and I’ve got pages and pages of notes and outlines. Finally. A real, fleshed-out book idea, instead of an idea that really hasn’t gone anywhere beyond a few little paragraphs, or a few pages. I’ve read several books so far, and I really think I’ve got something. We’ll see.

 

Collin has officially reached the pre-teen stage that marketing has tried to cuten up with the title, “tweens.” It’s horrible. Bryon says that kids get like this so that, when they are eighteen, parents are glad to shuffle them off to college. I’m beginning to wonder if that’s true. He’s still my awesome, wonderful baby at times, so I’m glad for those moments; but, when he’s tweening it up, Dear God, save us. The sass. God, the sass. And, I’ve not mentioned the pre-pubescent boy smell. His ASD aversion to texture makes him feel that deodorant feels “weird;” so, we have to force it on him, which means constant policing. Samesies, with shampoo and toothpaste. Funk, and not the groovy kind, is everywhere.

Look, it’s my sweet baby boy, showing Monkey his new computer. I have to will myself to see those moments shining through when he’s acting like his tween self 99.9% of the time these days. I take comfort in the fact that all the other parents I know are going through the same thing. I’m not alone. He and his peers are taking over the world, at the moment.

Look, it’s my sweet baby boy, showing Monkey his new computer. I have to will myself to see those moments shining through when he’s acting like his tween self 99.9% of the time these days. I take comfort in the fact that all the other parents I know are going through the same thing. I’m not alone. He and his peers are taking over the world, at the moment.

 

There are probably hundreds of tiny things I could talk about, or think of saying, but that’s what happens when I don’t write for a while! Come back later, and I’ll do my best to have more garbage to spew out! Maybe I’ll force fed some down here, regardless of importance!

 

 

 

 

 

 

 

FabFitFun...FabFitFlop?

With lots of free time to flit around the web, comes lots of free time to see celebs and plain folk, like bloggers shill for paid posts for all kinds of things like cleanses and subscription boxes. There’s a subscription box for just about anything you want these days, from socks to science kits. I get a box for cat ladies. No, I’m not kidding. And yes, it’s awesome. Once a month, I’m delighted with a box full of trinkets, reminding me how fun it is to love kitties. It’s all basically garbage; but there’s almost always a shirt to add to the gym or pajama pile. And occasionally, there’s something worthwhile. Last time, there were adorable kitchen towels. Plus, the cats love the toys they get each month.

 

As anyone who knows me can attest, I’m a bit of a shop-a-holic. I call the UPS/Fed-Ex man the “present man,” because I tend to buy enough stuff that he comes bearing gifts that I’ve purchased for myself, sometimes that I’ve forgotten about. I need these presents to survive. I used to think I didn’t. But, I’ve come to accept it as part of my mental makeup. Some people need a walk outdoors, some need a chat with a friend, I need a new dress to recharge my batteries. We even have my shopping habits worked into our household budget. I cannot survive without…well…buying crap. It’s part of my makeup. One has to know oneself, right?

 

But, I truly have everything that I could need. In fact, I have everything that ten people could truly need. So, I thought that I might try one of these subscription box services that delivers a wider variety of products. I thought it might counter some of the shopping, if a bunch of stuff came to the door, unannounced. Overall, it’s cheaper than shopping, and it’s less effort. See, good thinking, right? I would be in anticipation of the present man, because he’d be bringing me an assortment of goodies; so, I don’t need to buy anything. Such a good thinker, I am!

 

So, I subscribed to FabFitFun. I had heard of it through copious advertising and seen so many bloggers do the unboxing videos. Oh, how excited they were to pull out their items and dangle them in front of the camera! Alas, full-sized products! Beauty products! Clothing! Such a combination! Seemed like a good idea.  

 

The first thing that happened when I subscribed was that I had to answer about forty million questions about my size, preferences, and likes, to sign up. That seemed okay, as I assumed they wanted to make sure that I would get appropriate products. The only problem with this process was that it took at least twenty minutes to set up my account. It was very time-consuming. I wish I had known it was going to take that long before I committed to the sign-up. It isn’t that I was busy, it’s just that I did it on a whim, and I wasn’t prepared for the time commitment. So, I got a little annoyed. This should serve as a little warning to anyone who is thinking of it: be prepared to really sit down and get into it, it’ll take a while.

 

Then…the emails started. I get no less than three to five emails a day from FabFitFun. This makes it very easy to ignore the emails that are “important,” meaning the one that allows you to log into your account and select changes to your box before it ships. You are allowed to make specific changes to your box, where applicable, which I almost missed, because the email was buried amongst the dozens and dozens of useless messages. This time, a selection, for example, allowed me to choose the color of the blanket they sent. You are also allowed to “upgrade” your box within certain time limits, and those messages can get lost amongst the rubble as well.

 

The biggest disappointment though was with customer service. I got my first box relatively slowly. My assumption is that it got delayed somewhere along the way, not really because of their shipping, but because of the postal service, based on the damage it incurred. Still, I don’t know, not for sure. All I know is that I’d seen several online posts of people talking about their “winter box,” and lots of people with unboxing videos days, even weeks, before I got my box. Finally, when my box arrived, it was very damaged. The whole side was crushed, and all the contents on that side were crushed. It was awful.

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I logged into the website to figure out how to contact customer service and talked to a representative. They offered me a measly $15 credit for my next box. Considering how much damage there was, I was pretty disappointed. I’m not really an idiot, at least I don’t think I am, so I wasn’t all that keen to take the offer. I get that the box is full of products that are retailing for approx. $45, but when you offer them for $10 on your next box, they aren’t really $45 products, are they? So, giving me a $15 credit, isn’t offering me much of anything, is it?

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You are basically giving me nothing. In other words, I paid full price for a box of crushed goods. This makes me feel unsatisfied and frustrated. If I went to a store, I wouldn’t pay full price for these items, so why should I pay full price for them to be delivered to my house?

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I was instructed to open all the crushed boxes. All of the merchandise was fine, inside, except for one item that was destroyed. They offered to replace the destroyed item, and still give the $15 credit for the following month, which would allow me to “shop” for add-ons for my next box. The add-ons are items left in stock from previous boxes at discounted rates. This is still a terrible deal, in my opinion. It made me feel like I was given factory seconds at full price, but I wasn’t really left any other options.

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The contents of the box are neither over, nor underwhelming. I’m happy with the blanket, and the conditioning mask is one I’ve bought for myself in the past. I’d wear the necklace they sent, but not necessarily have bought it for myself, if I’d seen it in the store; but only because I don’t really buy cheap-end jewelry. So, between products and customer service I’m left with a meh feeling, overall. Because I’ve heard that cancelling the subscription is equivalent to trying to get out of a cult, I decided to simply stay subscribed and to give it another go-round. We’ll see what the next box brings. The spring box may be filled with goodies that are incomparable. Who knows?

I do know this: they best not mess up the next box, as sick people have lots of time on their hands to complain and annoy customer service people into cancelling their accounts. So, FabFitFun, I’m watching you. I did my due diligence and looked into your customer service after this, and noticed that you have some issues. Eyes on you, now.

One Million Moms - and Television

I still spend a lot of time working out. Okay, when it’s a good week. Sometimes, I spent a lot of time on the couch. It’s definitely not like the “old days,” where I’d work out to the point of death, or stand toe-to-toe with the likes of Vin Diesel and stare him down for the Smith Machine, because he was taking too fucking long with his sets. But, I still work out, a lot. So, I like to have a variety of stuff to watch on the ol’ iPad machine. (Couch binging requires the same thing, by the way! Don’t judge)

 

This can pose a problem. When you have hours to kill, binging takes on an entirely new meaning. Sometimes a drama will do. Sometimes, a movie. Sometimes, you want a comedy. And, don’t get me started about how everything is shot in dark, moody lighting with dramas these days. You can’t fucking SEE anything, especially with an iPad. It’s so frustrating on treadmill. I’ve watched entire seasons of shows, not even sure who’s in them, because I watched it at the gym. Yes, I know that rant made me sound at least a million years old. But, would it kill a director to turn on light?!

 

Anyway, one of the main sources I use to select good, new shows for my “to watch” list, especially comedies, is One Million Moms (OMM).

 

Hear me out, because I realize how insane this sounds considering who I am: bleeding heart atheist liberal.

 

If you are unfamiliar with One Million Moms, they are famous for two things:

 

1.     Being famously incapable of counting to one million

2.     Being really good at getting offended about everything

 

So, it stands to reason that if they dislike something, calling it morally corrupt, or damaging to our children…..

 


 

…then, it might have a shot at being pretty funny. The other day, I found a comedy I’d have skipped over: Single Parents, for example. It’s your basic laugh-track, predictable comedy, but it’s got some good jokes; and it doesn’t require tons of concentration, which is perfect for the gym. I also have been enjoying A Million Little Things, but it’s a little heavy on the whole suicide angle, for someone with severe depression, sometimes. Plus, it’s not exactly always peppy gym material, so I take it in metered doses, despite how much OMM hates it because it has a gay pre-teen.

 

Other little-known fact about me: I skip most new shows because I can’t stand the heartbreak of one-season shows. Just as I get committed, and willing to settle in, they get cancelled. It’s devastating. There was a show, a few years ago, with Matthew Perry, where he was in some grief group, that I was just getting into, and BAM! Cancelled. Damn. I’m still not over it. He was making some real break-throughs. Emotional growth, quashed!

 

I like watching my shows over and over again. This is a trait that Bryon adores (we need a sarcasm font, and we need it now!). For example, he thinks it’s plumb adorable that I consider the characters of The Office my close personal friends…not the cast, the characters. I feel I’m not alone in this. Don’t others watch the same “comfort” shows, over and over (Friends; The Golden Girls; The Office; and new to the repertoire, Brooklyn 99 – welcome)?  

 

Anyway, One Million Moms didn’t like Single Parents, and asked Capital One to pull their commercials from the show because….wait for it…a parent hugged their child while cussing. This is early prime time, so I can’t imagine the cuss was that bad. In fact, I watched for it, and didn’t even notice it, so it must’ve been something as benign as “crap.” Well, fuck me. What a load of shit on a cracker.

 

They also strongly dislike American Housewife, a show I enjoy about 75% of the time, for gasp, the same reasons they have issue with it. I think there’s a line between being funny, and being a shitty mom. So. Much. Yelling. But I also get the idea that it’s my thing to not be into that joke because I’m not a fan of the yelling because of my personal hang-ups. Others may think it’s a hilarious take on the situation. That’s the beauty of art and entertainment. Don’t like it, don’t watch it.

 

I bought art for my home that I liked, not that someone else forced me to like, or that was censored. A-R-T. People don’t often think of sit-coms, or even the one-hour drama as art, but it is. Media is a representation of who we are as a people. It represents the very society in which we live, at a foundational core. Censorship of media is censorship at its very basic level. So, OMM, thanks for helping me ignore your attempt at creating your very own banned books list.

 

I refuse to subscribe to their page, for fear of what other pages I’ll be linked to, so I just hit them up once a month or so. I also read Faithwire, and several other crazy-pants right-wing sites like Breitbart. For good measure, I read Huffpo and Mother Jones with my NYT. Still, One Million Moms is the only place to get really good recommendations about what to watch that isn’t all, “watch this revival of Jesus Christ Superstar,” or “there’s a weird production of Waiting for Godot on PBS tonight!” I’ll take my anti-recommendations any day.

 

P.S. You should read what they think of some show called Lucifer. Their pearls and panties may never come unknotted.

Do You Like my Hat?

I went to see my grandmother for Thanksgiving, which means I went to the belly of the beast (Michigan), for a few days. Every time I swear I won’t go back, for any reason, I go back. As long as she’s alive, I can’t swear that place off, for good. So, I guess, I hope that’s forever, then. The trip was rife with panic attacks, passive-aggressive accusations, and my complete emotional shut-down, by the time we pulled out of the hotel we’d checked into.

Doesn’t she look pretty in her brightly colored dress? Her nursing home has a HUGE cage of birds back there. I could sit there all day and alternatively feel sad about them being in cages, and being enthralled at watching them. I’d go insane with the flip-flop of my mind.

Doesn’t she look pretty in her brightly colored dress? Her nursing home has a HUGE cage of birds back there. I could sit there all day and alternatively feel sad about them being in cages, and being enthralled at watching them. I’d go insane with the flip-flop of my mind.

 

On a great note, my husband, non-native that he is, thought we were staying in the adorable city of Nov-ee. Michiganders will be laughing, because Novi is pronounced just like it’s spelled, Nov-i. How cute is he?

 

It’s now Wednesday, almost a full week later, and I didn’t see, speak to, or otherwise communicate, directly, with anyone other than my grandmother; still, the whole idea of my family stressed me out so much, that I got dressed today, for the first time. Yep, that’s what that place does to me. I used to be ashamed at what a loop they threw me for, but it’s pretty common for survivors to be less stable, the further out they are from their childhood. And, it takes pretty intense therapy to get over it…which I’m in. Depression and trauma are no joke. And, one day, I hope to get past it to a degree that I don’t throw my whole life into chaos, just by being in the same state as the “family;” you know, those folks who are rolling their eyes right now, and treating me as a joke. Gosh, I can feel the love from here.   

 

By the way, since I brought up getting dressed, let’s talk hats. Hats always make me think of Go Dog, Go.

In case you don’t remember this Dr Seuss classic, this poor lady dog keeps asking this dog if he likes her hat, as she walks by with increasingly impressive head decor. He always says no…until one day…then, she gets invited to the dog party in the tree. Apparently, hats are the key to friendship.

In case you don’t remember this Dr Seuss classic, this poor lady dog keeps asking this dog if he likes her hat, as she walks by with increasingly impressive head decor. He always says no…until one day…then, she gets invited to the dog party in the tree. Apparently, hats are the key to friendship.

 

And, whenever I wear a hat, I harass my family by asking, “do you like my hat?”

 

I have the smallest “normal” adult head possible. I don’t have any medical condition for my small head, other than the dent in the back from my skull missing a large chunk (NBD, right?); but, I had a small head before that. I can even, comfortably, wear children’s baseball caps! So, wearing adult hats can be an issue. But, I like to go all out when I get dressed, even to run to the pharmacy. If not then, when? I only have two speeds for my clothes: sweats, or everything. So, I like a hat, now and then.

 

Still, I contend it takes a fair amount of confidence to not only put on the hat, but to wear it out of the house. I have a few that I wear, on occasion, with as much boldness as I can muster. No matter how good it looks, inside I’m screaming, “does this look okay?” Everyone trying to pull off a look is thinking the same thing. So, the next time you see someone wearing something bold, pay them a damn compliment, you animal.

 

Today was such a hat day. My destination? The Fairfax Clinic to pick up some prescriptions for my child. Fancy.

Not the greatest shot, but I’m not a big fan of taking twenty pics of yourself to get it right. This is what I look like, take it or leave it.

Not the greatest shot, but I’m not a big fan of taking twenty pics of yourself to get it right. This is what I look like, take it or leave it.

 

Then, it blew off in the parking lot, and my “cool” factor dipped by a factor of, at least, ten, as I had to chase it, in my high-heeled boots. It was so windy today! This one is adjustable inside, and it fits my head well. Still, I knew to keep my head down, towards the wind, the whole walk to the car. Apparently, the vacuum created by opening the car door, as I sat down, translated to: make Rachel look like an asshole.

 

Back to my original topic, I will say this: my family, that is to say my husband and son, were heroes. They navigated arrangements, so I’d have to communicate with no one. They saw I was spiraling anyway, and snuck out to buy me a present and a card (a very silly cat hat – another hat! --, with an attached scarf and paw mitten pockets – both very chic and very me), which was beyond touching. They gave me more hugs in 48 hours than any mother/wife has a right to. They rose above and beyond.

Look at that boy! Helping to show Grandma some pictures and laughing with her about how cute and funny they are. What a kiddo! So proud of him. Autism makes these kinds of interactions hard, and I was so impressed.

Look at that boy! Helping to show Grandma some pictures and laughing with her about how cute and funny they are. What a kiddo! So proud of him. Autism makes these kinds of interactions hard, and I was so impressed.

 

And, my 11-year-old child sat patiently in a nursing home, with nary a complaint for almost two days. He played a flute concert for my grandmother, chatted with her, and was all-together pleasant. My memories of nursing home visits as a kid are thinking that the elderly were trying to suck the youth right out of me, as they saw me traipsing down the hallways. Plus, they don’t care who you are there to see, you are everyone’s surrogate grandchild. As an adult, I am much more forgiving of the elderly; perhaps because I’m closer to becoming elderly.

 

Told you: two speeds, nicely dressed or pajamas. These are a cross between sweats and pajamas. I was just so tired! But, some of the people I love most in the world! Leaving one behind.

Told you: two speeds, nicely dressed or pajamas. These are a cross between sweats and pajamas. I was just so tired! But, some of the people I love most in the world! Leaving one behind.

Overall, I’m glad I went, but I’m not sure when I can muster a trip back. Hugging my grandmother enough times to try to save them up is wonderful, and gives me memories that are beyond special; and her words, just for me, warm my heart. I cannot replace those things; I shall treasure them always. I just wish I didn’t have to deal with all that pesky stuff that breaks my spirit and my heart, in order to do that other nice stuff. 

 

Mental Health

Let’s talk about something a little dark and frustrating, today; something that usually goes along with chronic illness, but is its own chronic thing too, not to be outdone: mental illness. Because, don’t get me wrong, you can be drug down, without accompanying physical pain, by mental illness alone. You can be knocked right the fuck down, right where you stand, and thrown to the carpet, never to get up again…well, at least for several days, weeks, or even months. Oh, and mental illness can be physically painful too. Exhaustion, aches, pains and the whole nine yards, of course.

 

When I’m depressed, I take my perch on the corner of the couch. I usually don’t move much, so I tend to get a lot of super cute pics of my cats…like this one.

When I’m depressed, I take my perch on the corner of the couch. I usually don’t move much, so I tend to get a lot of super cute pics of my cats…like this one.

I have a picture-perfect life. It’s the same thing we say to celebrities who claim mental illness, exhaustion, or other mental health issues. How can they feel bad, when they have it so good, right? That’s the point. It doesn’t matter how good you have it. Mental illness doesn’t discriminate. It doesn’t matter what you have around you; it’s what’s going on inside you, that matters.

 

This is hard for me to confess, or talk about, and it’s hard for most people with mental health issues to talk about. But, it’s important for people to talk about! It’s time to be aware of these things, instead of pretending that it’s not a “thing,” or that I just get a little down sometimes. Yeah, I do; but it’s a lot more than that. Let’s get real with what it really is.

 

Here’s what I didn’t know: I’m sick in the head, too. I’ve been sick in the head for longer than I’ve been sick in the body. I thought that being sick in the head was a thing that I’d acquired from being sick in the body, that my swings into depression, and my anxiety, were caused by my failing body, and the frustrations that it brought me. Sure, those things help bring on a cloud of depression. Sometimes, the heavy weighted blanket that it throws onto my body make it impossible to get up off the couch, even when I have to pee so badly that it feels like I may die if I don’t move.

 

But, I’ve learned that I have had these issues all along. I’ve stifled every real emotion that I’ve ever had, except for anger. I’ve refused to feel hurt. I’ve refused to feel love. I’ve refused to feel anything. I got really good at keeping feelings locked away, and pretending they don’t exist. I’m a good robot. So now, I fall into fits of depression and anxiety, almost at random, rather than to deal with feelings. It’s unbearable. It’s deeply painful, and it’s frustrating for me. I can never predict these sojourns into darkness, and I feel like a terrible burden to those I love.

 

For those who’ve never experienced depression, for me it’s as if the world stops, but just for you. There’s literally no reason to do anything. Nothing makes you want to move from the spot you are in. It’s as if you are almost paralyzed by immobility. I could be dying of thirst, but not go to the kitchen to get a beverage. It feels as if I’ve atrophied all my useful muscles. It’s as if my mind works, but my body won’t do what it’s supposed to do, and I don’t care about that problem, not enough to solve it. Worse, I can look around and see things I would like to do, like dust, vacuum, or otherwise take on tasks, but can’t be bothered to do them. Thus, I begin to feel guilty for leaving them to others. The same is true for tasks I should do for myself, like getting dressed, exercising, or even brushing my hair. The guilt compounds the depression, which makes the whole situation worse, and the cycle compounds. It’s a terrible cyclical situation. It’s as if the Puritans are there with the stones, slowly crushing you to death, but you are doing it to yourself.

 

As if that’s not enough though, you throw anxiety into the mix, which jumps in at random times. For anxiety, you just feel like you are dying. Suddenly, there isn’t enough air in the room, then in the world, for you to breathe. Sometimes, I get dizzy first, or my legs start shaking uncontrollably, but that’s just “mild” anxiety. I don’t take medication for my anxiety because it doesn’t mix well with my pain medication. It can cause side effects like death, so it’s generally not considered a good idea. So, I get to suffer through anxiety attacks by just waiting for them to pass. I can try to talk myself through them by gently reminding myself that there is enough air, and I’m having an anxiety attack. This usually doesn’t help. A person having an anxiety attack knows they are having an anxiety attack, and intellectually knows there is enough air. It doesn’t help them feel like they are breathing it. Alas, I just have to wait until it’s over and I can breathe normally, again, leaving me exhausted and numb.

 

My last visit to the land of darkness has been the worst that I’ve ever experienced. I can always feel it coming on, and I do everything I can to keep it at bay. I try to bury myself in routine, exercise more, take on a project, pretend that I can’t hear the little voice in my head that says, “why bother, everything is useless.” Nothing helps.

 

This time, the darkness overtook me to the point that I imagined what it would be like to forget suffering through it any longer. I’ve always seen through to the other side. I’ve always kept my son in my sights, even when the voice in my head says, “you don’t matter to him, to anything, to anyone.” I’ve always said to myself that my loss would destroy him. This time, I was able to rationalize that I didn’t care because I’d be gone. It was a horrible time. The moment I realized that I’d put my son aside, I knew that I had to tell Bryon that this wasn’t just a typical dark patch.

 

Around the same time, I had a panic attack, in my bed, at random, in the middle of the night. I haven’t been able to sleep in my bed, since. I can barely go near my bed. I’ve been sleeping on the couch. That is mental illness. My husband, tucking me in at night, kissing my forehead, and asking me what he can do to help me feel comfortable, and helping me think of strategies to get me back to bed, is awareness that we don’t have to be in this alone.

 

Not a super flattering picture of me, but Bryon took it. He said he just missed the moment when all three cats were sleeping on me. Told you, I don’t move much when I am on my depression-spot!

Not a super flattering picture of me, but Bryon took it. He said he just missed the moment when all three cats were sleeping on me. Told you, I don’t move much when I am on my depression-spot!

But, more importantly, we need to be aware of just how hard it is to find appropriate help. Finding a new therapist out here has been an uphill battle. I’ve been white-knuckling my depression and anxiety since we got here, which was a terrible idea, obviously. So, I promised to find a new doctor, especially since this last bad patch has been so rough.

 

I had only one requirement: I wanted a woman. I had a preference for a close drive. Anyone with severe depression, which I’d recently sunken into, knows that sometimes, even brushing your teeth can seem like climbing Mt. Everest. Alas, I couldn’t picture getting myself motivated to make a 30-minute trek. Five minutes seemed more reasonable. But, I’d compromise if I had to.

 

Eight phone calls later, I’d realized that I’d have to make a concession to accept any doctor with a pulse. That’s right, there are NO female therapists within a 30-minute drive who were accepting new patients. None. Zero. How is that possible? Let alone therapists that take my insurance. With local hourly rates at up to $200, how are we still shouting at people to “get help,” when they feel helpless, or to “reach out?” Where? To who?

 

I’m lucky to have a support system at home to help feed me, and make sure I’m meeting basic life-sustaining needs when I’m in the throes of a rough patch. I’m also lucky to have someone to talk to about nonsense when I just feel like babbling. I’m lucky that when I confessed to feeling like I was afraid of myself, my support system held my hand and guided me over the hump. Even more, I’m lucky that, even without insurance support, we can shoulder the burden of the bill for mental health care. But, I’m frustrated at how difficult it is to find.  

 

Everyone, and I do mean everyone, has their demons. There’s a little crazy in all of us. All of us has a tale to tell, and a little weird to let out. We’re all messed up in our own way, and we all manage our weirdness. We all have coping techniques, and they all work for us; mine were working just great, until one day, they just didn’t, anymore. I was a driven, successful woman, with an education, career, spouse and a child. Then, I got sick. My life slowed down, and I lost control. Everything fell apart. Everything came unraveled and my marble sack spilled. I haven’t been able to put it all back together, ever since. It was always in there. I just need new coping strategies and some more therapy.

 

Don’t be ashamed to ask for help, or to confess your crazy. It’s always okay. Pulling yourself together, no matter how much, is a victory. Being aware of one another and being kind is how we heal wounds. Go out there, be aware, and be nice!

Oh…and PS: No matter how dark it gets, KEEP LOOKING FOR THE LIGHT AT THE OTHER SIDE! Don’t give up fighting!

How to Humiliate Yourself at a Tattoo Shop

I did this thing, on Saturday.

My new clover - because Crimson and Clover is my jam

My new clover - because Crimson and Clover is my jam

I’d been meaning to do it for a while. I’ve put it off more than once because it’s kind of a big step to get your first visible tattoo. I guess you can often see my back tattoo peeking out of my clothes, but I can’t see it. I can see my peacock one coming out of my dresses, but it’s barely. This was different.

 

It wouldn’t have been a story without it being embarrassing or weird in some way though, right?

 

My artist was super cool, chill and relaxed, which was awesome. And, I loved the shop I went to. So far, I have had an artist I really loved, a shop I really liked (mostly), and now both. Perfect. This place didn’t play super loud music, which was so nice. I know that makes me sound like a stick in the mud; but tattoo shops tend to have the music so loud that it’s almost painful. When you are sitting there for hours on end, and you can’t even have a conversation with the dude who is stabbing you in the body, it’s both awkward and physically uncomfortable. Plus, this place had private spaces, with doors! Doors to hide body parts! Once you’ve had your entire side exposed to third street in Redondo Beach, you’ll appreciate the small pleasure this affords the forty-year old woman who may not have anything to hide…but wants to.

 

I may have mentioned in the past, that I have a chronic illness, no? Haha, right? And, that when this illness flares, I still occasionally need to take opiate pain relievers? This is relatively rare, but when I do need to take them, it really messes with my digestive system, thanks to bile salt diarrhea, a side-effect from gall bladder surgery years ago. I have to take special medicine for that too, so that I don’t immediately expel everything I eat, within instants of eating it, directly through the back entrance. It’s such a joy. But, being overly blocked from opiates, and double-blocked from those meds is a recipe for disaster. Obviously, this is a delicate balance.

 

About two weeks ago, I had a headache. I don’t even remember how many, enough that I felt better over the course of the few days it lasted. It wasn’t a ton, but it wasn’t one or two. It always takes 2-3 days of a steady dose. All it takes is looking at them though, and I am backed up! Thankfully, my system was back on track without the assistance of any laxatives or intervention. UN-thankfully, it got back on track the day before my tattoo appointment, and it announced its reintroduction to the world with lots and lots of gas.

 

So. Much. Gas.

 

If there were appropriate words to describe this smell to you, I would. But, let’s just be accurate, and maybe that will be description enough. A person’s bowel hasn’t moved for two weeks. Nothing. Not a peep has been heard. Not even a little guy has sneaked past the gate. So, it’s two-week’s-worth of old food, and old stool that got caught up behind the guard; all of it has just been sitting there festering. That’s what it smells like. It’s not an eau du toilette.

 

I had to be there at 2 pm. By 2 pm, I’d lost about 8 lbs. and gone down a full pants size. No kidding. Does everyone’s belly stretch this much? I was hoping that I was “done,” by the time I got to the shop, and had done everything I could to assure it to be so, without “stopping” the whole process back up again. Balance, people. Balance! Soooo delicate!

 

I’d stopped eating by 10 am. I was barely drinking. By the way, this is excellent advice for getting a tattoo. Go in starving and dehydrated. You definitely won’t pass out. Totally ignore me. If this were my first tattoo, I would be a total idiot. Even for my fifth, I was a total idiot.

 

Anyway, I was doing fine. I was nearly finished, when we started chatting about what the rest of his day looked like. Apparently, they’d had a Halloween special, wherein he’d been doing black cats for $40. His whole day was little black cats. I thought it was cute. We’d had such a chill and cool session, he said he’d do one really quick, if I wanted.

 

Sure. Why not?

 

“Because, you are a ticking time bomb, woman!” says my belly.

 

So, my arm’s all done, and while he’s setting up for the cutest black cat ever, I swing by the bathroom to pee. I’m still feeling totally fine, but as soon as I made room for the gas to move down by emptying my bladder, apparently, all bets were off. I farted myself out of the bathroom, and hoped no one would go in after me. Yep, I stunk up the bathroom at the tattoo shop. How classy of me.

 

In my infinite wisdom, I’d chosen my thigh for my cat, and worn overalls to the shop. In my defense, I didn’t know I’d have to take them off, but I also could’ve chosen somewhere else for the cat. Still, the minute, and I do mean the instant I pulled them down and my artist got near my thigh, the world’s tiniest but stinkiest fart escaped. Don’t think I wasn’t trying so hard to hold it in that I was visibly sweating. To his credit, he pretended nothing happened, and I died on the floor.

 

If there’s a God, he decided that wasn’t enough torture for me. He felt that this was an amusing little play he’d created, and wanted to see it play out a little longer. So, while my ass was stuck in this dude’s face for the next half an hour, he forced my stomach to cramp, over and over again. My poor but cheeks worked harder than they’ve ever worked before. I felt horrible.

 

Literally. I was afraid I would die of holding it in. If ever there were a possibility of that happening, it was that day. And, I kept picturing the moment that I couldn’t hold it any longer, when it just burst out. The artist would be startled by the sonic boom, the lines would go crazy on my tattoo. He’d pass out and die from the stench. I’d die the thousand deaths of humiliation. We’d be found by housekeeping days later, the smell still lingering. The horror.

 

Then, it occurred to me: this dude’s face is so close to my ass right now that he can visibly see when I’m clenching, and when I’m relaxed. Please, oh please, let him think I’m clenching because he’s hurting me. Oh, the humiliation of that moment.

 

When it came time to pay, I texted Bryon about the tip he thought I should leave. I ended up tipping him almost 40%. I justified it because he was cool, did a good job, and I want to have a good artist to back to…and, because I farted in his face. Anyone’s face who I fart in, deserves a good tip. I think I’ll probably still go back to him next time. I figure the amazing tip will overshadow the fart memory, right?

 

Halloween!

WARNING: RAMBLING and NON-PROOFREAD POST AHEAD! DONE OVER THE COURSE OF A VERY BUSY DAY J

 

Collin still loves Halloween. He loves dressing up, and he loves the candy (of course). I think he likes getting home and sorting it into piles, more than anything else. I’m not sure if that’s an autism thing, or just a Collin thing. The other day, he broke my heart, when he said, “Next year, I’m probably a little too old to go, so this is it, huh?”

 

Oh, my baby, you can go out trick or treating until you are the kid at the door that the grown-up judgey-lady passing out candy rolls her eyes at you. In other words, until you are forty. Then, you can dress up with your kids. You are never too old for Halloween.

 

We were all set to have a great Halloween, and because he loves it so much, I went all out decorating the porch. Years ago, I went to a social event on General’s row at Fort McArthur. It was in a Colonel’s house, but nonetheless, I was very impressed with how “decorated,” it was for the season. Literally, every space had some kind of seasonal décor. She had a seasonal cozy for the toaster, for cripes’ sake! Don’t get me wrong, that much effort is decidedly not me. And, when I asked her how she had the time and effort to go this far and do this much to beautify her home, she said she considered it her job to be a wife, everything from getting up before her “hubby” to make his morning coffee, to making his house a home. Gag.

It’s sickening how adorable this is, right? If it makes it less adorable, I forgot to get the appropriate bulbs for the pumpkins (they were burned out), so they skeletons were just hugging empty plastic shells all season.

It’s sickening how adorable this is, right? If it makes it less adorable, I forgot to get the appropriate bulbs for the pumpkins (they were burned out), so they skeletons were just hugging empty plastic shells all season.

 

I’ve sat on that thought for a lot of years. It’s ruminated. It’s percolated. It’s morphed. I’m home now, and I’ve discovered that I like making my house a home. Part of that is the seasonal stuff. I like making my boy’s face light up with the Halloween decorations. I like doing it for Bryon, so he doesn’t have to do it himself. That doesn’t mean that I don’t also insist on his help for the things that are too hard for me to do myself, of course. But, if I don’t have a job anymore, isn’t that my “job” for my family, and not in a Donna Reed sort of way; but in a way that I want to do? No one would care if I didn’t put up Halloween decorations, but I would. I would be less happy if they weren’t happy. So, up they go. That means I’m fighting you for the last 70% off decorations at Michael’s, woman-with-too-many ravens in her basket! What are you decorating? A burned-out orphanage?

This is a “progress” shot. There were more floral arrangements wired to this bad boy. The take-away message here is that I like birds. BIRDS! I had to go to two stores to get enough birds. Stupid Michael’s was sold out of decent birds. I had to get birds with hats and collars from Target. Oh well, I’ve decided that they work for fall too. Don’t tell me if you don’t agree.

This is a “progress” shot. There were more floral arrangements wired to this bad boy. The take-away message here is that I like birds. BIRDS! I had to go to two stores to get enough birds. Stupid Michael’s was sold out of decent birds. I had to get birds with hats and collars from Target. Oh well, I’ve decided that they work for fall too. Don’t tell me if you don’t agree.

 

But, someone shoot me if I put a cozy on my toaster. Please. Or, if I feel the need to get up at 4 am, to greet my husband’s day with coffee and toast. In fact, as I recall, she made him a full breakfast. Far be it from me to judge what another woman does to keep her household running smoothly, but we all have our balance, our line in the sand. That’s mine. He can make his own damn coffee, and “greet his own day,” as she called it. I’ll put up décor and run the Swiffer. We’ll see what grows from there.

Aside from some ribbon on the creepy cats, and a few skeleton animals on the back side of the bench, along the brick, this was my “haunted village.” I’ve built this over the years by buying up cheap ceramics from Goodwill, and spray painting them black. Then, I buy the really, really cheap skeletons from the craft stores, at the end of the season, and sprinkle them in. Spider web, and viola. Village. Normally, it goes inside, but this bench was a good spot for it, this year.

Aside from some ribbon on the creepy cats, and a few skeleton animals on the back side of the bench, along the brick, this was my “haunted village.” I’ve built this over the years by buying up cheap ceramics from Goodwill, and spray painting them black. Then, I buy the really, really cheap skeletons from the craft stores, at the end of the season, and sprinkle them in. Spider web, and viola. Village. Normally, it goes inside, but this bench was a good spot for it, this year.

 

P.S. I switched from Halloween to fall today (and he helped put it all up). Oh, and I’m a cheapskate. So, I ONLY buy what’s on sale the week(s) after the holiday. So, all my décor is accumulated from years of shopping post-holiday(s). Maybe more pics of fall next time!

 

Anyway, Collin’s school wouldn’t let the sixth graders wear costumes to class, which was a bit of a relief, because let’s face it, some kids would feel like they were too old. This means half the class would be too cool for the other half of the class, leaving half the class feeling dorky. So, there was a moratorium put down on costumes. Less fun, sure; but, also less chance for embarrassment. He mentioned, repeatedly a girl that he clearly feels is “cool,” that was staying home this year, to help with her family’s haunted house.

 

However, my son found his own special way to wreck the day for himself, anyway. Cops and Robbers is the playground game of choice here in Virginia. I joke that these are the two career goals here. I have said that they should be more specific: cop and meth addict. I know, super mean. Still, this is basically the only thing the kids play, when they are outdoors. Plus, it’s an opportunity to be cruel to one another, as kids, without being overt: assign the kids you don’t like to be the “robber,” chase them mercilessly, then “arrest” them, tell them they committed a horrendous crime, and “punish” them. All innocent fun! Hooray!

 

Collin was running, top speed, of course; this is the only speed he knows. He claims that he thinks he was jumping over some steps, when he fell. He doesn’t know how he fell, what angle at which he fell, or anything useful about his injury. This, this my friends, is what it’s like to have a kid with autism, when you want a useful detail. He can, however, tell you all the details you want about the playground stairs, near which he fell. They are wooden, there are eight of them, they have splinters on some of them, and they are somewhat steep. They have dust on them. The doctor felt this information was also useless. Did I mention these stairs were near where he fell, not stairs upon which he fell?

 

A pause here to tell you my biggest fear in life: that I will be at work, or otherwise engaged, and the school will call with my sick or injured child, and I will miss it. On the first day of class, I always tell my students that I leave my phone on, and that I leave it out, just for this purpose. All it takes is me picturing my sad-faced little boy, sitting in the office with an ice pack, or rushing to the hospital in an ambulance, all without his mother, and I’d strap the phone to my face.

 

With all of that fear ingrained in my soul, I missed the injury call when it came! Don’t get me wrong, I saw the call, but it didn’t say the name of his school, and the city displayed incorrectly. So, I didn’t pick up! I’ve been getting nonstop solicitor calls for the past thirty days or so, so I just hit, “ignore.” Oh, the humanity!

 

When I was headed home, Bryon told me he was also driving home, only he was with our injured boy. I about lost my lunch. I had so many questions! I cried so much that Collin was crying less than me. I felt like the worst mother in the world, for real. Bryon did his best to calm me down, because he’s the best, and he felt like it was the perfect moment to show me up with his calm, cool demeanor, and his constant praise. Screw him.

 

He told me that even if the school had reached me, I’d have had to call him anyway, because I was an hour away (Ugh! Ugh!), and he was home. He was right (I’m the worst!). Still, an injured boy needs his mama. Just re-telling this makes the mom guilt so heavy that I think I’ll be weighed down all day.

 

I gleaned from the phone chat that the kid had a broken wrist. He was relatively calm and collected, but in pain. Collin thought it was a great treat to be injured, because he got to watch cartoons in the middle of the day, before doing homework. We left for the ER as soon as I got there (at least it wasn’t for me, this time – yay!). No matter how much he practices, he can’t get that little lip of his to quiver and pout when he’s faking. He could get me to buy him a car if he could.

Collin, playing the flute…I could’ve put this picture down below, where I tell you he’s currently having trouble with this activity, which is where I meant to put it. But, it’s been a long day, and I’m tired.

Collin, playing the flute…I could’ve put this picture down below, where I tell you he’s currently having trouble with this activity, which is where I meant to put it. But, it’s been a long day, and I’m tired.

 

They took us in right away, and I was right: broken. Wait…fractured. Bryon keeps correcting me. Apparently, that distinction is wildly important. All that matters to me is that a bone in my child’s wrist is no longer structurally the same as it was when I sent him off to school, that morning. He has to wear a brace until he sees the orthopedic doctor, where he might get a cast. Poor kiddo. He’s pretty miserable. He doesn’t like the brace, and it definitely hurts.

World’s cutest kid at the Emergency Room. I mean, look at that face. Isn’t it adorable?

World’s cutest kid at the Emergency Room. I mean, look at that face. Isn’t it adorable?

 

He managed to get home in time to trick or treat at a couple of dozen houses, but he was only out for about a half an hour. It’s his right hand, so he’s pretty limited at school with writing, and with playing the flute. He’s basically a mess.

He’s some character from the Netflix show, Troll Hunters. I don’t watch the show. I let it be a Daddy/Collin bonding thing. I refuse to watch it with them, so they have a lingo all their own. It’s kind of cute.

He’s some character from the Netflix show, Troll Hunters. I don’t watch the show. I let it be a Daddy/Collin bonding thing. I refuse to watch it with them, so they have a lingo all their own. It’s kind of cute.

 

For him, the worst part is that I have to help him wash his hair. For a kid approaching puberty, there’s nothing worse than the shame of mommy helping in the shower. He insists on wearing his underwear for this procedure. At first, he insisted he didn’t need the help at all. However, the minute he tried to do anything himself, including opening the shampoo, he cried, and I heard that sound all mothers secretly long to hear, the whimpering sound of “Mommy!” He still needs me! Huzzah!

Collin’s happy face that the splint fits him, and he doesn’t get a cast at the ER

Collin’s happy face that the splint fits him, and he doesn’t get a cast at the ER

 

Still, one of the highlights, which is definitely the wrong word, of the evening was one of the worst days of someone else’s life, I’m sure. We were seen relatively quickly, and were right on track to be sent home, when a worksite accident was brought in. It was obviously fatal. All the medical staff was rushed off to one area, except for a PA, and a single nurse, who were left covering the rest of the patients. It was clearly a terrible accident.

 

Bryon had my phone,  and was apparently taking photos of me while I was in the universe entitled, “OMG MY BABY!!” This photo is called, “Rachel, you are wearing an unflattering shirt. Throw it away.”

Bryon had my phone, and was apparently taking photos of me while I was in the universe entitled, “OMG MY BABY!!” This photo is called, “Rachel, you are wearing an unflattering shirt. Throw it away.”

When the person’s loved one arrived, the anguish in her cry was something you had to feel; it was indescribable. Collin, right at that moment, was asking what was taking so long to be discharged. He paused when he heard her wail, and we explained that she just lost someone she loved very much, so no matter how badly you think your day is going, there’s always someone who’s day is worse, who has lost something more important than what you think you’ve lost, and her voice helped us remember that. He was very quiet for a while and then said, “I didn’t mean to be selfish about trick or treating.”

 

I don’t mean to imply that I’m glad for someone to have died for my son to display empathy, far from it. But, those moments are huge for a kid like Collin. He was very sad for that woman, for the victim, and even for the nurse who provided comfort to the woman, as she was so kind to him, only moments earlier. He even kept repeating, “someone always has it worse,” throughout the evening. I think it really hit home with him.

 

I’ve thought about that woman, and the victim of that accident a lot since then. I know that, for her, Halloween will never again be about opening the door to adorable children dressed as dinosaurs and princesses. But, I wish that she knew that, in some way, before she was even able to finish being notified of her loss, it was already doing someone else some good in the world. Life, and people are certainly a circle. All of us sharing the same experiences.

 

Sure, the next day, it was back to Collin’s world as usual, but some part of me has to believe that the nugget of the lesson is back there. He’s a kid that sits on those big lessons for a long time. Just when you least expect it, they come out in big, big ways.

 

Another gem from Bryon that says, “Rachel, you are going more grey than you think you are.” Also, why does my child seem skeptical of my smothering love?

Another gem from Bryon that says, “Rachel, you are going more grey than you think you are.” Also, why does my child seem skeptical of my smothering love?

So, that was our super-eventful Halloween. From the ER, we went trick or treating. I handed out candy dressed in Wonder Woman pajamas because I was too exhausted to put on my usual corset! I was wildly disappointed with the kids in our neighborhood because almost none of them said thank you, and many of them just grabbed into the bowl and took handfuls of candy, rather than waiting their turns. It was a weird night. I try to be patient with the way kids trick or treat, because kids are all battling different issues, but it seemed more like rudeness and bad manners than anything else, and I love Halloween. I love talking to the kids about their costumes, and telling them how cute they are. Overall, it was an off night, and I hope for smoother sailing next year, when Collin is decidedly NOT too old!

The cats: every time the doorbell rang and there were kids begging for candy out there. Loki felt it was unreasonable.

The cats: every time the doorbell rang and there were kids begging for candy out there. Loki felt it was unreasonable.