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.

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.

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.

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!

Lessons From This Flare

Chronic illness comes with random “rewards” and things you don’t really think of. There’s lots of bits and bobs that you don’t imagine, that become a really big part of your life, when being sick becomes the biggest part of your life. Here’s a few silly little bits that I’ve noticed in the last few days.

“Random” Increases in the Credit Card Bill - During a Flare

When I have a pain flare, that crashes me in bed, or on the couch, I live in the world vicariously through Amazon, Anthropologie and Ulta (primarily, but not exclusively, of course). In other words, I imagine what I would wear, how I would wear my makeup, what fancy soap I might wash with, if I showered, and what I might read or do, if I moved more than a centimeter. I don’t actually use any of these items for weeks beyond the flare, but I damn well buy them, in anticipation.  

Most recently, I bought this thing. It’s a bit out of my comfort zone, but I’ve wanted to dare a wrap/kimono/poncho-type sweater thing for a while. I’ve given up on the idea that I’m too short, or too anything to wear clothes I’ve longed to wear. I’ve been watching the sales for one, and poof, finally hit a good one, at the right time. You always know you are getting something good when the model looks ambivalent, or even annoyed to be wearing the product. Bryon loves my sales-watching. It got me a $499 coat this year for Christmas for less than $150. I wouldn’t be able to dress the way I do without hawk-eyed sale-watching. The Anthropologie sale rack and I are very well-acquainted.

Photo is a screenshot courtesy of Antrho. Obviously, I didn't take that. I won't be that tall. But, i can wear boots like that. And, I can un-comb my hair.

Photo is a screenshot courtesy of Antrho. Obviously, I didn't take that. I won't be that tall. But, i can wear boots like that. And, I can un-comb my hair.

Thank goodness for a husband who tolerates my habit of pretending to be normal when I’m sick, and therefore spending very non-pretend money on presents for myself. When I’m not in a flare, I spend like a normal person; actually, I spend less, so it averages out.  They should make a rewards card that doubles points when you spend insane amounts, all at once, and then zero amounts later. In other words, I want rewards for being me, because I’m special. I’m a snowflake, dammit.

I was looking for a cute picture of a snowflake, and the Google machine gave me this. I couldn't resist.

I was looking for a cute picture of a snowflake, and the Google machine gave me this. I couldn't resist.

I guess I’ll have to make do with the Ulta rewards I’ve earned, so far, this year. I’m saving it for my next flare, so I can go bananas on randomly colored eye-liner that I’m only just getting brave enough to wear beyond the boundaries of my hallway.

The Appointment Line

The military health system is take-the-good-with-the bad.

And then you have....Tricare? Doesn't have a good ring.

And then you have....Tricare? Doesn't have a good ring.

We don’t have to worry about the ACA being repealed because the Cheeto-Elect hasn’t written a policy that covers self-tanner, prostitutes, golden showers and syphilis-prevention, but not abortions, or birth control, because damn, that’s amoral! Who am I kidding? He can’t write! But seriously, I'm so grateful for military healthcare, because we don't have to worry about it.

Anyway, the worst part, and I kid you not, this truly is the worst part of Tricare (at the moment), so I have nothing to really complain about, is that Tricare thinks it saves money to remind patients that they have pending referrals. An automated line calls you every three days with a recorded message, telling you that “the patient born on XX/XX/XXXX has an active referral and should make an appointment.” Because I have approximately a million specialists and two million referrals, I get calls every day (because they are staggered). Because Collin has approximately half a million specialists, he gets calls every other day. Ironically, their efficient system has no stop-gap measure to notify itself that the appointments have been made. It’s a very specific type of persistent telemarketer.

Guilt Over Random and Specific Things

I watched an interview with a millennial star, a young Justin Bieber-ish-Clone (I’m so old!) who thinks they are the shit because they do movies, make music, and are also trying to change the world, one Tweet at a time. He made me feel terrible because he talked primarily about how if we all just stopped using straws, we could eliminate some staggering amount of garbage, in landfills, every year.

The specificity that it was straws made me feel like the shittiest person in the world because, well, I use a lot of straws. Tilting my head backward, to drink hurts. “Oh, but Rachel,” you say, “you have an excuse, it’s okay.” But, do I? I feel like when we know we could do something in a gentler way, none of us has an excuse to do something in the worst way. That goes for anything from using too much trash, to simply being nicer to one another. Open a door, hand a pan-handler your change, thank your waitress, be kind.

With a severe lack of appetite, I barely eat as it is, so I drink a lot of smoothies. Know what doesn’t go down a regular straw very well? Smoothies. Bryon found these amazing, massive, use-extra-plastic smoothie straws! They are even more wasteful, but also even more awesome. The whole idea is so plaguing to me, I think of it all the time. So, I wash straws and reuse them for days.

What’s my point? When you are sick and have a lot of time on your hands, you both have the time and the energy to wash straws, and to care about washing them. You become vexed by stupid stuff, and then wondering if it isn’t stupid after all; in the long run, it’s the small stuff that adds up to changing the world. Damn straws!

While writing this, to add some links though, I found these. Stainless steel, reusable straws. Guess whose Amazon Prime account got some more activity today?

Bryon is very excited about something else we get to hand-wash with a special brush. It recalls us to the days of Doc Browns baby bottles with the countless pieces and the itty-bitty brush. Shudder.

Bryon is very excited about something else we get to hand-wash with a special brush. It recalls us to the days of Doc Browns baby bottles with the countless pieces and the itty-bitty brush. Shudder.

Yep, got some. I even got some smoothie-sized ones.

Apparently, the no-straw thing is a big deal for the National Park Service, too. I always knew it was a no-straw zone, but learning more every day. Phew, you learn a lot when you’ve got time to care about things like straws. See, what I mean. Being sick comes with both, for lack of a better word, punishments, and perks.

Other Random, Disconnected Sick People “Perks” From This Flare

  • Sun Glare on the TV, but you can’t move because of pain, to either shut the drapes, or change angles. Alas, until the sun reaches its peak, half the television might as well be in shadow. Such a “first-world,” problem, a term I hate. A problem is a problem.  

 

  • I found a new perfume that I love from free-with-purchase Ulta samples. Taking “French” showers because both I stink, and my pajamas stink from lack of showering helps force you into the sample bags. Daisy, by Marc Jacobs. If you are curious, it doesn’t smell good when your son uses all of your samples, all at once, several sprays each. He did it about five days ago, and the bathroom still stinks. What’s the problem here? Daisy was over $80. It was a better deal to buy the gift set. Oh well, another present for me! I’m too old for drugstore perfume, right?

 

  • Running out Netflix shows. Theoretically, this is impossible; but, the reality is that indecisiveness is the actual problem, so I scroll, and scroll, until exhausted, I just stop on the first thing I see. Did you know that there is a whole section devoted to weird sex habits of the English? I didn’t. It was an accidental discovery on an incredibly misleading title. Now, Netflix thinks I’m a pervert, with a very specific interest in the sex lives of middle-aged Brits.

 

  • I’m home so often, that I can distinctly tell when someone has made a home, or auto-improvement that is “noisy.” For example, the mini-van down the street, has installed a very loud, and very piercing backup beeper, just in case its ever involved in a, well, there’s no way to finish that sentence logically. It’s a MINI-van. It doesn’t need a backup beeper. That’s insane. This is how I imagine the conversation about getting it installed going:

 

Female of Household: There’s lots of kids in this neighborhood, dear. I think a beeper would be a good idea.
Male of Household: Don’t you think it’s overkill?
Female: No...because....
Male (knowing he’ll lose anyway): Yes, dear
  • I’ve learned that Loki truly does like to lick your face. And your hands. And your eyes. And, he thinks he can fit his head in your mouth. To what end, I have no idea, but he’s determined to do it, every time I yawn, which with muscle spasms, happens a lot. I’m not sure what he hopes to find in there, but he’s a black cat, so maybe he’s looking for his soul. I should clarify that it’s really only my face, hands and eyes he’s interested in. We’ve bonded, which I can’t say that I hate. I love those darn animals, except that he likes to do his soul-searching at 4 am.
Ugh. I'm smitten. He can do whatever he wants and I forgive him. Look at that little widdle face.

Ugh. I'm smitten. He can do whatever he wants and I forgive him. Look at that little widdle face.

  • My pajama radius has expanded to, pretty much, anywhere. And, it doesn’t matter what kind of pajamas I’m wearing. I used to put sweat pants on, if I were getting in the car, leaving the house, letting the dog out, or getting the mail. Now, I don’t care. I drive Collin to and from school in footie pajamas and a robe. I stand on my patio that way with Daphne. This flare broke me for good. Considering lots of my pajamas have hoods and tails, because they are adorable, you’ve got to be pretty confident in your game to let that radius expand. “Why yes kindly neighbor, I am wearing a kitty tail. What of it?” My radius is only getting bigger. For “How I Met Your Mother Fans,” I’m thinking this is similar to the underpants radius rules, which still stand firm, for me, at shower to closet.
Urban dictionary , keeping all of us old people from sounding like fuddy-duddies with the youths.

Urban dictionary, keeping all of us old people from sounding like fuddy-duddies with the youths.

New Year: New Headache!

I had a procedure called a rhizotomy, just before New Year’s. This sounds really cool. It sounds like my beak of a nose should be smaller, right? No, just me? Yeah, yeah; I know that the word for that is rhinoplasty. But, it sounds similar, so maybe it’s like the back-alley version, or the cut-price version.

I shared this picture before, but this illustrates my point beautifully. See? I have a big nose. Bryon doesn't believe me, but he's blinded by love for me. It's giant!

I shared this picture before, but this illustrates my point beautifully. See? I have a big nose. Bryon doesn't believe me, but he's blinded by love for me. It's giant!

It’s not. A facet rhizotomy is basically severing nerve joints to relieve back and neck pain. They use x-ray guidance, and they burn your nerves, in very specific spots. My doctor is awesome-sauce, so he knocks me out hard-core, and I sleep for like twelve hours, afterward. He also pumps me full of some good pain drugs, so I feel pretty happy with him about the whole thing, when I “wake up,” for the car ride home, just to be tucked back into bed. I feel like “oooh, I feel like this procedure helped.” Of course, he’s a damn liar at that point, because when you wake up twelve hours later, your nerves hurt, and it’s all been a lie.

See, a potential side-effect of a rhizotomy is that the pain can get worse for a few weeks. Worse. Way worse. Like worse than you could possibly imagine. For weeks. The idea is that after those few weeks, the pain subsides, and especially in conjunction with PT, it’s supposedly like skipping through a field of daisies. But, those first few weeks are like death. They warn you that it’s an “increase of symptoms,” but because you’d be willing to try anything to make the pain stop, you can’t imagine that an increase of symptoms could be much worse. It can be

After my twelve-hour drug-induced nap, I woke up feeling a bit worse for wear. Then it hit. The pain was intense. Right at the nerve, it felt, literally, like someone had a knife right in my skull. This is not a metaphor. A knife. Right in my skull. I kept arching around, trying to escape it; but, it would only feel better if I was pressing on my head, hard. Because my neck muscles, especially at the base of my skull, are so weak, I have no strength to gather around this weakened area. A triggered spot in my weak neck causes a chain reaction of symptoms. Within hours, the whole thing had exploded in pain. I was curled up in a ball, rocking back and forth in agony. I’ve been alternating between migraines and Chiari headaches since January 2nd.

At my best, I’m curled up in bed, in the same pajamas and robe, for days on end (ewww), watching television and reading, trying to remain as still as possible, and cozily enjoying a 2-3 on the pain scale. At my worst, which happens about twice a day, I’m packed in ice. We have two ice bags, the old school type with screw tops, and about fifteen ice packs, that work well around my neck and across my face. Bryon packs them completely around me, so I’m covered, and then holds my hand. He takes my blood pressure continuously, making sure we don’t need to go to the ER. It’s been a fun time for all of us.

This isn’t the first rough patch for my head. It’s one of the longer ones. For sure. Sometimes I get a headache patch that lasts a week or so, sometimes longer. I know that this one has scared Bryon a little, mostly because the “bad” days of it have been more frequent. He’s taken control of his fear by creating a tracking chart in Excel. My little nerd. He sits down with me, every day, and asks me about two million questions about every symptom in my body, and then takes all my vital signs, and cross-checks them against all the weather data. He’s convinced there’s a possibility that there’s correlation with the pressure outside.

Mostly, I’m just bored. I’m ready to get out of bed! I’ve been in bed for four days now. I was on the couch for two or three before that. Now, I’m just ready to move, move, move. I’m sick of sitting and laying down. Being sick is boring. But, my headache comes back when I even get up to go to the bathroom; so, I’m stuck sitting here. Ugh. It even comes back doing things like typing this for too long. Boooooooorrrrrrreeeeed. How much longer will this last?

I see my neurologist on Friday and my pain guy on Wednesday. Wish me luck that one of them gives me a magic cure. All of my docs are in the loop, and all of them are concerned. The surgeon has me back on the "strap the thing to your head" routine, and call me in the morning route - but he's even concerned. Everyone is in the know, and no one is happy about the increase of my headaches, especially because they seem to keep happening. Hopefully, they decrease in intensity, and frequency. Here's hoping!

The best thing about this is that it's not even a surgical sponge anymore. it's a sock. Yep, a sock. The UCLA super-surgeon gave me approximate dimensions of A SOCK to strap to my head. The sad thing is, it worked! This is me with a sock-strap and an ice collar.  So, for days, I have been walking around with a sock strapped to my head. This is how lunatics start. Pretty soon, I'll be walking around, pushing a shopping cart full of my precious cargo, and wearing a housecoat.  Oh, and aside from my big nose, I also adore that when I make a pouty-face, my chin looks, simultaneously like a witch chin, and like a weird geological map of an undiscovered land. Bryon thinks i'm beautiful. He's weird.

The best thing about this is that it's not even a surgical sponge anymore. it's a sock. Yep, a sock. The UCLA super-surgeon gave me approximate dimensions of A SOCK to strap to my head. The sad thing is, it worked! This is me with a sock-strap and an ice collar.

So, for days, I have been walking around with a sock strapped to my head. This is how lunatics start. Pretty soon, I'll be walking around, pushing a shopping cart full of my precious cargo, and wearing a housecoat.

Oh, and aside from my big nose, I also adore that when I make a pouty-face, my chin looks, simultaneously like a witch chin, and like a weird geological map of an undiscovered land. Bryon thinks i'm beautiful. He's weird.

Pushing Publish - Die Hard or Die

Yesterday, Bryon, ever-loving-doll that he is, suggested that I don’t shit-pot stir, and just save what I had to say for myself. He’s not wrong. He never is. Damn that boy’s eyes. But, I obviously posted it anyway, and he came, instantly, around to my side of the fence. Not because I smacked him around a little, but because I explained the following, and he’s an incredibly supportive dude. If you don’t have a partner like this, get you one. They’re fabulous to have around.

I’ve said this before. I started this because I’m sick. Being sick takes a toll. It wrecks you. It tears apart who you are inside and it makes you re-evaluate who you thought you were. It puts all the pieces on the table, and it makes you wonder if they were all from the same puzzle, or if maybe your kid dumped all the puzzles you own together, and you have a lot of sorting to do. It means that you do a lot of self-evaluation. When, shitty things happen, like being dropped by a friend because they’re a rotten person, for example, you don’t bounce back like you used to anymore. Life has a different meaning because, well, you almost didn’t have one.

My life has slowed down immensely. Instead of the standard daily grind of up, gym, shower, dressed, rush out to work, school, back home to prep dinner, and then repeat; I have the luxury of choosing when to rest my body, for as long as I need to. If I’m having a bad pain day, week or month, I can stay in my pajamas. I have to live this way now. Maybe for a while. Maybe forever. Maybe not. I don’t know. The certainty of uncertainty surrounding one’s health and wellness is another thing that takes a toll. I don’t know if I’ll wake up tomorrow well enough to do what’s on my calendar for the day, every day, any day; but still, I plan. No one knows what the future holds, but I know that mine is like an anvil, waiting to drop. Any day is the day I can be crippled by a Chiari headache. And, any day is the day that my surgery may fail.

Alas, I have a lot of time for contemplation and deep reflection. I have energy to spend on weighing issues that are bothering me, and why. I have time to, literally, just sit with my own mind. I wanted to share that side of being sick with the world. Not just the “this is what a headache” feels like side. Or, how many appointments there are, doctor’s visits, and the technical side of Chiari. There is a lot to Chiari that I’d hope to educate people on. But I want to share “life” with Chiari, or chronic illness, in general. I want to share my life.

When something is bothering me for so long, and so deeply that it’s not allowing me to write about anything else, it’s time to get it out there and over with, right? I’d even stopped journaling, and writing commissioned work because I just couldn’t get past it. I didn’t even want to think about it. Of course, the point stands, that I didn’t have to push the “publish” button, obviously. So, why take that step?

For that I have two reasons. Firstly, it’s disingenuous to say that I share this process, and then skip pushing publish on what’s been holding me back for over a month. I realize that I’m writing in a vacuum, where barely anyone is reading what I’m saying. But, I’m reading. And, that’s important, if nothing else. Secondly, finding that journal, and seeing those pages made me both devastated for the little girl I was, and exuberant, at the same time. It confirmed who I am because it confirmed what I remember to be true.

So, pushing the publish button was a way for that little girl to say to the world, “see, I’m not crazy, they’re crazy.” The world can be just me, myself and I for all I care; but, when you say something aloud, it becomes real in a different way. It was a very real way of acknowledging, for the little girl, who’s been treated like an enemy of the state her whole life, especially when she dares to stand up for herself, that she’s not been imagining things. It was important to establish that I shouldn’t doubt myself, especially in the very foundations of what made me who I am. In my ever-weakening short-term memory, this felt so important to me. It was important, to me, in this situation, that I plant my flag.

Half the reason I got hit as much as I did, or got as much shit as I did, when I was a little girl, was because I refused to roll over and take it. I stood my ground. I stood up, over and over again, and said, “no.” I refused to be bullied. I refused to apologize for things I wasn’t sorry for. I refused to be told that I was the worst thing that ever happened to anyone, which I was told on more than one occasion. And then, I got the fuck out of there. So now, I’m standing up again. I’m not as weak as anyone thinks I’ve become. Age and illness may have softened me. Time may have made me a grown-up. But, I’m still the same little girl who refuses to be pushed around. I’m now a grown woman who knows what’s right.

Part of being sick is learning what things you can and can’t change; but also learning how to live with them. I can’t change my skull. I can’t change my headaches. I can’t change the situation into which I was born. But, I can adjust how I accept and deal with these things to best affect change to lead to my best life. Now, having put the worst behind me, I feel ready to charge forward and deal with regular bits of life, and the day-to-day struggles of chronic illness, life with a busy military spouse, an autistic kiddo, and just life in general. Writing that last entry, and pushing publish was like lifting a ton of bricks off my chest, I suddenly feel ready to write, write and write, to talk about a thousand things that were behind that log jam. I am ready to face a new world, now.

And that’s why I did it. Phew!

Onto bigger and better things! Life goes on. Today, we’re off to be terrible parents by watching the best Christmas movie ever with my family: Die Hard. Violence, bad language, what could go wrong?

Not 100% sure, but I think this is sub-titled in Dutch, which is crazy-perfect considering the Dutch heritage presentation timing, right?

You’d be surprised how many people (most recently, the devout Evangelical Christians we just befriended), when we introduce ourselves say, “like in Die Hard!” So, I guess it’s time to introduce our impressionable child to the other parts of the clan McClean. He did his heritage presentation this week at school, in which he presented all about the seat of our clan in Scotland, and about mommy’s side in the Netherlands and Sinterklaas.

Look! He made this!! I'm so proud. After a twelve-hour day, filled with meltdowns, Collin took a project to school that he was ashamed of, and then played sick the next day, begging to make a new one. This is the result. He worked his butt off all day. AMAZING!

Look! He made this!! I'm so proud. After a twelve-hour day, filled with meltdowns, Collin took a project to school that he was ashamed of, and then played sick the next day, begging to make a new one. This is the result. He worked his butt off all day. AMAZING!

His Netherlands side. I'm particularly fond of his required family portrait because although he already used the picture of Grandma on the other draft, he said he liked this one better because it had mommy in it. Everyone all together now...awww.

His Netherlands side. I'm particularly fond of his required family portrait because although he already used the picture of Grandma on the other draft, he said he liked this one better because it had mommy in it. Everyone all together now...awww.

But, it’s way more fun to teach him to yell Yipee-kayy-yaay Mother-Fucker!...in an “age appropriate way.” He almost, accidentally, said “ass” yesterday, and I swear, he almost self-reported himself to The Pope, and he’s not even Catholic; so, I’m not even the slightest bit worried.

Coming Forward: The Cost

The dust has mostly settled from last week’s family debacle. I’m not done hurting, though. Not by a long shot; but, I’m most certainly done with my “family.” I’m not done because my husband, when he read even a fraction of what was said to me, said, “never again;” I’m not done because I’m hurt just this time. I have, literally, no family left. None.

I’m done because I’m ready to find a way to start the grieving process. I’m done because I cannot allow myself to yo-yo back and forth to an unhealthy environment, hoping that this time it will be different, that this time, I will get what I need, only to be destroyed a little more. It has to be over for good. It’s amazing what health crises do for your outlook on life.

I knew it would take time. But, I didn’t anticipate the fallout. I didn’t anticipate that relatives that haven’t seen me in decades, would come out of the woodwork, just tell let me know what a piece of shit they think I am. No matter how self-assured you think you are, those things ding at your confidence, if only for a minute. They knock you over like one of those inflatable punching clowns; you pop back up, but you most assuredly go down for a second.

 

So, before I put a nail in that coffin that is my family, there’s something that’s important for me to express, and just get over with. I think these experiences are probably pretty common, and that my situation is not all that unique; so, I share, and I hope that my words continue to reach others who find hope and solace with knowing that they are not alone.

One-Sidedness

People on the outside, namely people in families like mine, think that the person who finally decides to share is a monster. Like me; they believe that I have no feelings, outside of those that are designed to hurt, or upset people. I’m some kind of maniac that just runs around willy-nilly, at random, hurting people, for some sort of non-purpose, or worse, for attention, that I’m somehow lacking. Or, that people like me do it for something akin to sport, or personal gain. I think it’s probably pretty normal to villainize the one who breaks free; it protects the delusional group-think, and protects the group ideology by having a shared enemy. 

“Secrets get in the way because appearance is more important than reality, which means anyone in trouble is left to cope alone.” (Cowann-Jensen, 2012).

But, I’m a person, an individual; I’m not a super-villain. While I know that I can’t make that clear to my family, because they operate under a group delusion that protects their own interests, I can remind myself; or maybe, I can make it clear to someone reading, who understands what it’s like to be in this position. I can make someone who is struggling with similar familial alienation understand that their feelings aren’t crazy.

It’d be nice if, just once, anyone, just anyone, in my family, would attempt understanding my feelings, instead of focusing on their own. It takes a great deal of maturity to do this, to see the world from a perspective, outside of your own. For example, I have thought extensively about why my family is upset. I assume that they are upset that I shook all of their skeletons out of the closet, right in front of the world. They are, likely, humiliated. But, rather than face up, they have chosen to hide and deflect.

In other words - Don’t share the secret! It’s your fault for exposing us, not our fault for the abuse!

“Oh the many ways in which children are made to feel like the abuse is their fault and that there is a price to be paid if they tell!” (unk, n.d.)

The Lash Back – I’m Not Innocent

The best-practice response for my family, or many families like this, has always been that a good defense is a good offense. It’s basically: Rachel said something horrible, so let’s get her. Let’s tell her she’s a piece of shit. Remind her of that one time she did something wrong. I deny nothing. I will always be an open book.

I was raised in a toxic environment, and I did what I had to do, to survive. I was raised in an environment where love was a commodity. My sister and are were sworn enemies from birth, pitted against one another for whatever bits of love that were doled out like crumbs of stale bread to pecking pigeons. We didn’t band together to protect one another from the onslaught of shit; we threw one another to the wolves. It’s not unusual for kids in abusive homes, instead of being protective, to be horrible to one another. It’s a pretty typical pattern, actually.

“In a dysfunctional family, the parents are inadequate or abusive. As a result, there is not enough love available for the children. Sometimes there’s no love at all. This sets up an unconscious competition between the children for whatever love might be available. During childhood, one child might ingratiate themselves to one or both parents in an attempt to get some attention from them. They are simply doing their best to survive in an environment deficient of the emotional necessities of life.” (Sirota, n.d)

I wish it were different; but what’s done cannot be undone. If you were brought up like this, and you’ve done shitty things too; it’s not a reason to think that you are like them, and you are unforgivable. You were part of a situation you couldn’t control. Listen to two monstrous things I did; they don’t make me a bad person. They made me a creature of my environment. Knowing, within moments of doing them that they were wrong, makes me a decent person; knowing that I regret them, every day, makes me aware that I can stop the pattern, that it was that place, not me. Still, I take responsibility for my actions.

I.

Once, I pretended that my sister’s treasured stuffed bunny, Kracker Jacks, had committed suicide to get away from how hateful of a person that I believed she was, pinning a note to its fuzzy chest, and hanging it from her ceiling fan from a homemade noose. I kept telling her, that no matter how much she hugged him, he’d always be dead, “inside.”

Seriously, what a fucked up thing to do. Of course, I wasn’t punished. What a piece of shit thing to do someone. But that’s how we were; I’m certainly not going to say that I behaved like a psychopath, at random though. There was definitely some serious provocation, which I’m sure the joint delusion of my family believes didn’t exist. The difference between me, and them, is that I can see that what I did was wrong; they can’t see anything they did, or continue to do is wrong. At all.

II.

The one and only time that I “hit” her, I jumped over the kitchen table to lunge at her, after she’d rolled her eyes at me, one too many times. I didn’t even make contact, because she scrambled away so quickly. She cried wolf about injuring her foot, and demanded to be taken to the emergency room, where the doctor told her that it wasn’t even a sprain. She spent seven years claiming her injury was so severe that she couldn’t even wear proper shoes. It was a beautiful event for her, because anytime I came to town, it was a way to remind everyone of the time I’d hit her; she limped, wore funky shoes, the whole nine yards. I don’t blame her for the attention-seeking behavior, not one bit. I’d have done it too, if it got me one iota of positive attention and love, especially if it shamed my sister too. Take it where you can get it, sista.

My favorite thing about that day was that when I hit her, I stepped outside, to cool down, knowing, even then, that I shouldn’t have done it. I was greeted by her, now-husband, who instead of comforting her, knew instinctively that he should get the fuck away from the confrontation. I immediately apologized to him; but he said:

“Did that feel good?
“Yes.”
“Good. Because she deserved it. Never tell her I said that.”

(Sorry about that broken promise, dude)

I’m sure he’ll deny it, till his dying day, and I expect him to now. If he knows what’s good for him, he still will. My mom told me she had it coming. And, my dad asked me how it felt as well; also, adding that he hoped it’d knocked the bitch out of her.” 

We were taught by masters of violence and emotional abuse; and, I’m not so sure that I didn’t hit someone who wasn’t provoking me. However, I shouldn’t have hit her. I shouldn’t have done a thousand little things that I did. But, there are also thousand little things she shouldn’t have done, like locking me in tiny to boxes, knowing I was claustrophobic. N-O-N-E of it was okay. I regret anything that ever hurt anyone, even things I don’t remember; but, I’m not sure that anyone else does.

What’s happening now is that the things that I did when I was a child, in a dysfunctional environment, are being thrown at me, as justification for behavior that’s happening today. Things that I have apologized for, things that I say, “yeah, that was a shitty thing to do.”

I apologize for not knowing how to act and for behaving like the caged animal that I was. I’m not that caged animal anymore. I’m gentle, sweet and tame, because my bars are gone. But, I’m also fucking strong. I got through, and I’m on the other side. I don’t tolerate abuse anymore.

You might say, “but that’s what you are doing; you’re asking them to own up to behavior done in the past.” But, the difference is, I was a child, responding to an abusive environment. They were adults. They bear a very different responsibility than me. Furthermore, they continue to refuse to own up to it, to pretend it didn’t happen, and to continue the pattern in a supremely unhealthy way.

The Other Side

So, I can’t be seen the way I was seen as a child, anymore. It’s damaging and dangerous. I’m not wrong. It’s wrong. None of us can. It’s wrong to be abused, physically, emotionally, and sexually; and then to tell the person that they are wrong for saying that it hurt. It was wrong then, and it’s wrong now. It’s wrong to ostracize someone for calling out how terrible it was, and is. It’s wrong to shout them down, and pretend that their past wasn’t real. It’s wrong to attempt to shame someone into quieting them down. It’s wrong to pretend they are crazy, in order to protect your collective delusion, and ego. I don’t speak for me alone; I speak for all survivors of abuse and familial alienation.

Most children of childhood abuse grow into adults who continue to be abused. I was abused as an adult, too. I was hit; I was emotionally abused. Once, when I was about 21, my mother grabbed me by the head, and screamed so loudly into my face that it was covered in her spit, “I hope you die.”

So, shout your abuse story from the rooftops; don’t pretend that it didn’t happen. Like most adults, abuse changes when you leave, or when you get bigger. My mom became a needy, soft version of herself, in order to manipulate me, and keep me on a short leash. Call me. Call me. Call me.

“…there are many, many child abuse survivors who are still dealing with daily ongoing abuse. Their suffering is very real and begs to be acknowledged.” (Beisner, 2015)

I can’t fight anymore. I can’t go back again, to have it hanging over my head like an anvil, that there’s a possibility of fighting, ever again. Be with people who accept you, for you, for the rest of your life. Those cheese-ball memes about family not always being blood, they’re true. Find your family; find people who love you and respect you. Find people who you trust. They don’t have to be related to you; because sometimes, those people are the worst for you.

Help

Once, when I was in middle school, I saw an after-school special about a girl who was being abused; so, she went to her school counselor. Suddenly, like magic, she was in a new place, with new parents. It took me a week to get brave enough to make an appointment with my counselor, and when the slip came to my classroom, and they called me down to the office, I had my heart in my throat. Still, I was sure that this would be it, someone finally would help.

I cried through the entire appointment. I could tell that, because I wasn’t struggling academically, she wasn’t sure she believed me. When I got home that night, my mother told me a counselor called, beat the shit out of me, and told me never to embarrass her again. The counselor called me down to the office about a week later to ask if things had improved; it was the last time I asked for help, or exposed our secrets.

But, no more. No one should keep the secret. Not anymore. I’m being ostracized and shamed for speaking out. I’m being dragged over the coals and left with no family. But, I’m not alone:

“According to a new study, half of all childhood abuse sufferers wait as much as five years before disclosing the abuse. In fact, 16% of women never tell, while a full 34% of men keep secret forever.” (North, 2010)

This isn’t a thing that people can just put on a clean shirt and get over. Childhood abuse has shown to affect everything from adult height, to intelligence. It can have lasting effects like depression and even PTSD. I recently freaked the fuck out when my son, just joking around, pretended to pat my bottom with a wooden spoon, for example.

It took me until now to finally ask for help again, to realize that it’s safe, that it’s okay. I’m not hiding anymore. I have my family. I have a therapist, and I have doctors. I refuse to deny the truth anymore, not to anyone. I refuse to pretend that I didn’t have wooden spoons and hairbrushes broken on my behind. I refuse to deny that I wasn’t locked in my room for days at a time. I refuse to deny that I wasn’t lied to, in order to manipulate my behavior. I refuse to deny burns and bloody noses. I refuse to deny any of it.

I hate the pain that this causes. I hate that my family is hurt; but I hate that they hurt me more. I’m thirty-eight years old, and I finally feel strong enough to face it, and take the repercussions, even if it means full detachment. I hope against hope, that someone out there hears this and feels strong enough to walk away from a similar situation that causes them pain. There’s no way to express what pain there is in knowing that my parents don’t choose me. But, then again, they never have.


P.S. I can’t thank the people that have reached out to me, with similar stories, enough. I’m so sorry that you’ve had this pain, but I’m so grateful that you’ve found comfort in knowing that you are not alone. It’s the only good thing that can come of sharing, and it’s why I do it.


The last thing I will say is that this is NOT for my family, who is likely hanging on my every word, waiting for their next chance to become indignantly right. This is for me. This is for you, the hopeful. This is is for the person who remembers being shit on, and is hoping they can get the courage to ignore that next call from their mother, father, or whoever. Do it. You can.

My Meltdown

I was a monster last night. A terrible, horrible, no-good monster.

I warned Bryon, despite the fact that he rushed in the door after working late, and stopped at the pharmacy on the way home to fill my myriad of prescriptions, that I was in a foul mood, so he’d better avoid me. Unfair, I know. I warned him that I had no reason to be in a foul mood, but I was in one, anyway.

I was irritable. Everything my darling son was doing, or saying, was making me crazy. His breathing was making me want to move to China. My own skin was making me question why we have skin. I hated our couch, our rugs, my pajamas. I hated my dinner. I hated my hair.

Oh! that’s right! PMS! I don’t mean to be “that” woman that sets women back twenty years, by blaming a bad mood on her period, but I’m pretty sure that’s what was going on. See, the day was going “fine” right before that. Sort of.

The Sweat

I had an appointment with Collin’s social worker earlier, which had gone “okay.” He’s being evaluated to see if he qualifies for ABA services. It’s a long process. We’re on our fourth in-home visit, and our fifth is scheduled for next week. She thinks we will qualify (thank goodness); so we’d gotten good news. But, I don’t love her. I think she’s a little...meh. She’s not warm and fuzzy. Thankfully, she’s not going to be who sees him, just who evaluates his needs. The thing that put me in a bad mood from our little session was that I have to go meet her at the gate, thanks to the fact that we’ve been at a heightened security risk for approximately forty years (is it really heightened security if it’s always heightened, I ask you?). It was hot, so the walk back and forth caused me to start sweating like a pig; I spent the first ten minutes of our session, wiping sweat from my face, with napkins, pretending it was some kind of dainty thing that normal people do. I tend to be a sweaty person, in general, and it embarrasses me. Usually, I wipe my face and pretend it’s no big deal, but today, it embarrassed me enough that later, I cried. Plus, I’m worried that this semi-cold woman isn’t going to approve us for therapy and we are going to screw up our kid. Cry.

The Jay Leno

Oh my God! That's a terrifying picture! But, I promised and unfiltered look at my life, didn't I? Well, that's me, isn't it? At this point, I'm all, "Maybe, this constant drying mask will work." Bwahahahaha! I wore that stupid thing almost 24-7 for days and days. Nope

Oh my God! That's a terrifying picture! But, I promised and unfiltered look at my life, didn't I? Well, that's me, isn't it? At this point, I'm all, "Maybe, this constant drying mask will work." Bwahahahaha! I wore that stupid thing almost 24-7 for days and days. Nope

I also spent much of my day trying to tend to the new chin I’m growing. I’m hoping to be able to donate it to a child, in need of a chin. Is there a program, like locks of love, where you can lob of body parts you are growing, like that? Really, I have a cyst. It rears up a few times a year, huge and painful. There’s not really anything I can do about it, except complain. This time, I tried a new approach. I didn’t fuck with it. Much. Most of the hideousness of the damn things comes from the squeezing. So, I didn’t squeeze. I put a mask-type thing on it; I put the prescription cream on it; I put ice on it. But, after about a week, I started using a needle dipped in alcohol to try to take some pressure out of it. I kept it really sterile, wiping my face constantly, as pounds of puss drained out in rivers, tainted with blood. Bryon backed out of the room slowly, shocked at what was coming out of his wife, horrified that he was married to a beast.

Still not gone... Homer is suspicious that he will have to adapt to a new member of the family. By the way, do I look tired enough? Also...this is what a person born without eyebrows looks like before she puts makeup on. It's scary, right? No, I don't, or didn't pluck them that way. I've never, ever seen, or used tweezers, IN MY LIFE! Born this way.

Still not gone... Homer is suspicious that he will have to adapt to a new member of the family. By the way, do I look tired enough? Also...this is what a person born without eyebrows looks like before she puts makeup on. It's scary, right? No, I don't, or didn't pluck them that way. I've never, ever seen, or used tweezers, IN MY LIFE! Born this way.

In ten days, it’s shrunk from the size of a mountain, to the size of a small hill. I’m still debating if I should go to the doctor to have it properly drained and packed, once and for all. At least, this time, I’ve not made my face black and blue with all the squeezing that I normally do. It looks like a large mound of flesh that shouldn’t be there, capped with a weird little scab. Nancy greeted me with, “did you get hurt? Are you okay,” instead of with the awkward, look-away that most people do when you have a giant blemish the size of a cantaloupe on your face. So, I must be doing something right with it this time, that I looks like an “injury.” Still, it makes a girl self-conscious. So, add it to list of reasons that I cried.

Bessie

Add to that, the fact that my bloated belly was hanging over my stretchy pants yesterday. I haven’t been able to work out, obviously, since my surgeries. This has made me, a little, shall we say, doughier, than normal? Most days, I can handle my new physique. Other days, I’m convinced I have cankles (p.s. explaining to Collin what a cankle was, yesterday, was the bright spot of my day) and that I have arm-fat when I wave. I am only allowed to walk, and now, officially, allowed to do the elliptical, sans arms. I am also allowed to do Pilates without neck or head movements. It is very restrictive, as you can see. The restrictions come off very, very slowly. It’s clearly, very hard to get my butt in shape. Literally, my butt.

I catch myself doing squats, or deep knee bends in the shower, or while I’m stirring eggs, thinking, every little bit helps. But, on the other hand, I figure, why the hell should I bother anymore? So, yesterday was one of those days that it all crashed down and I figured that I was a whale. I’m not. I’m normal. I’m probably skinnier than normal. But, I felt horrible about myself. So, add another reason to the list of why I cried.

I’m Medusa

Plus, oh yes, there’s more. My medication messes with my appetite, and it makes me generally unhealthy in every way. So, my hair is like a bedraggled, dry mess. It means that I have a bad hair day, pretty much every day. When you get sick, you realize just, exactly what defines you, as you, because one-by-one, things get taken away. For me, I have lost so very much, and I’ve started to hang on, desperately to “last things,” like my hair, as my identity. As it clings, lifeless, limp and frizzy, to my scalp, day after day, sometimes, and it looks like crap, it makes me realize how much I’ve lost. Most days, like with the weight, I can shake off how bad it looks, put it in a ponytail, and realize that I can try something new again tomorrow: a new shampoo, a new curling iron, a new conditioner. But other days, it’s all too much. So, another reason I cried.

I’m Useless

There’s more. I’ve been painting a lot. I’ve got several really good ones socked away. At least I think they’re good. My husband tells me so, and he’s totally unbiased. Ha. He’s been encouraging me to stock up more, and start a way to sell them, like a “real” artist. He’s not just trying to stack up income, he wants me to feel vital, the way I was when I was working, and he knows that being able to say that I’ve sold something I created, would do that. I know where his heart is, and it’s a beautiful thing. He suggested an Etsy store, and I thought it was a good idea. We scrolled through some of the listings there, and some people have amazing stuff, and others, well, others make TONS of money like this.

I think anyone who paints or draws has a modicum of talent, but this woman inspires me to actually start an Etsy store, because, well, if she can, I can. This painting, in particular of this woman's speaks to me so much, I'm tempted to buy it. What is she trying to say with it? What's her message? Are all animals one in the same? Are owls also pigs, and therefore flowers? Is all nature,  all  nature?  

I think anyone who paints or draws has a modicum of talent, but this woman inspires me to actually start an Etsy store, because, well, if she can, I can. This painting, in particular of this woman's speaks to me so much, I'm tempted to buy it. What is she trying to say with it? What's her message? Are all animals one in the same? Are owls also pigs, and therefore flowers? Is all nature, all nature?  

I’ve got to fit somewhere in the middle. I'm not saying she's stinky; really, I'm not saying that at all, she's got some crazy amount of positive reviews. But, what I'm saying is, if there's room for that kind of style to be appreciated so heartily, there's got to be room for me, right? It’s not a crazy idea, anyway. It put a little light in my heart, to imagine that even one person would pay a few dollars for something that I created, put it on their wall, and it would make them happy.

Anyway, a few days later, someone casually made a remark about housewives who do various non-contributory things, such as MLM, selling junk like eyelashes, makeup or kitchen products, claiming to “own their own business.” Off-handedly, a friend joked that these women also do things like start Etsy stores to sell junk. This obviously stung a bit. She’d no way of knowing what I had been thinking, and I know she didn't mean anything by it. I said that I had been thinking of just such a thing. Bryon defended my idea, of course, man that he is. But, add that to the list of reasons I cried.

So…

I was a mess. I cried for about an hour, I think. These things sneak up on you. Feeling fat, feeling hideous because of an extra chin, feeling useless, feeling like your hair will never be pretty again, feeling like you’re a sweaty monster and your son might never get ABA therapy because you say the wrong things, and feeling like a terrible mother because your child’s breathing annoys you….these things are the worst.

Then, your “terrible, breathing-monster” son hears you crying quietly, and crawls into your lap. He doesn’t care why you are crying, just that you are. He gives you his monkey because, “you need it more than he does right now,” and he lays in your arms until you stop, all without a word. When he thinks Daddy is taking too long to notice that you are crying, he screams for him, as if it’s an emergency that you are crying, “Daddy! Mommy is CRYING here! What are you doing that is more important!? Get over here!”

I liked the boy’s approach better, frankly. Daddy, realized it wasn’t an emergency, that a PMS meltdown can be put off, can be ignored because I’m being crazy; but, Collin realized that that none of that mattered, tears need comfort. Bryon is amazing, in every way, and he came to comfort when he was summoned. But, that boy had it right. I’m grateful for them both.

I woke up today still feeling fat, still with a big cyst, and still having frizzy hair. But, I woke up also remembering good things. I have an article going live today that I’m really proud of. Remember that blog post about the goodbye letter I didn’t write to Collin when I went into my surgeries? Well, a parenting website decided to publish it (I'll put the link when it goes live), and I’m getting paid for it! Hooray. I finally found a Wonder Woman Barbie I’ve been wanting forever.

I had to pay over twice retail for it, but oh well. If stupid Mattel decides to release it again, and I can buy it retail, I’ll scalp someone else for it too. Give and receive, right? I have finally started another painting, and it’s coming out nicely. And, we leave for Comic Con tomorrow; by tomorrow night, I’ll be sitting in the Invisible Jet to have my picture taken! Can’t get better than that.

This makes me happier!

This makes me happier!

I also woke up with heartburn. This might be unrelated.

Warning: Family Drama Ahead

Our life has been needlessly stressful over the last few days. Life, for a sick person, should be easy; at least that’s how I feel it should be. My (insane) opinion is that the universe has dealt sick people a raw deal; so, everything outside of the sick-thing is supposed to be puppies, rainbows, and eating without calories.

We took this photo, after some tears were shed, some harsh words were spoken, and the family needed a big hug, and some together time. Nana had sent us a pretty nasty letter. She had neglected to realize that when she speaks to ONE of us harshly, she speaks to ALL of us harshly; one of us means ALL of us. No matter what, we are a together family; that's what is important, and the  most  important take-away of any drama nonsense. Always. I just keep looking at this, and remembering that.

We took this photo, after some tears were shed, some harsh words were spoken, and the family needed a big hug, and some together time. Nana had sent us a pretty nasty letter. She had neglected to realize that when she speaks to ONE of us harshly, she speaks to ALL of us harshly; one of us means ALL of us. No matter what, we are a together family; that's what is important, and the most important take-away of any drama nonsense. Always. I just keep looking at this, and remembering that.

This philosophy sometimes gets me in trouble. It makes me binge shop, binge eat, and do all sorts of things I shouldn’t. Frankly, since I’m basically a goody two shoes, that’s about everything in the “things I shouldn’t do department.” But, because of this sense of entitlement to a decent life, outside of sickness, I tend to think that when I (or my family) get(s) screwed over, that I’m (we’re) entitled to apologies.

This has caused a great deal of consternation in my family’s life, of late. My poor husband and I have been doing a lot of hand-wringing, over what amounts to a temper-tantrum that my mother-in-law threw, way back in December. My gosh, that was forever ago! Seems like someone should just get over it, already, right? Tried that approach. Admittedly, sassily. But, nah.

This isn’t going to be a whiny complaint about my MIL being a pain; okay, maybe it is, a little. It’s a missive about why people can’t just get along, especially families. And moreover, why can’t people make peace, and apologize, for the greater good?

Generally, I’d agree, that any spat that has gone on for this long is no good. For example, my sister and I didn’t speak for years, and it was terrible. But, I’m also glad we had that break because, I think, we both learned that we aren’t the people we’d imagined each other to be, the ones that we’d learned to hate, and be angry at, so readily and so spitefully. I think that the break reset those buttons we’d learned to push so easily; but, I missed her, more than I knew. She’s a link to a part of my life I want to put in a box and never open again; but, she’s also a piece of me that I want to hold onto and love. Now that we are speaking again, thank goodness, I see how alike we are. She’s silly (in the best way) and ridiculous; she’s strong and resilient; she’s brave. Somehow, we’re everything the same, and everything different, all at the same time, and I’m grateful to know her again. If something came between us again, I’d rush to fix it, because that’s what family is: peace and appreciation. I regret the terrible thing I said that made her not speak to me, and I’ll never do something like that again; but I’m glad I did it, because it taught me not to do that again.

But, this thing that’s happening with my MIL? I am not over it, and neither is my husband. He’s not over being called home from work early to rescue his wife, who was trembling in fear, having locked herself in our bedroom, afraid of said MIL. Neither of us are over being told that we’re not entitled to our hurts. I’m not sure that I’ll ever be over being told that everything is, and always was, my fault, for a variety of reasons, including that, essentially, I’m mentally ill. For realsies. Hang on, I have to tell my other voices to quiet down…Okay, I’m back.   

Despite my relatively crappy family, growing up, I had this idyllic idea of what it would be like when I had my own family; I dreamed that in the world outside my dark nuclear family, families loved one another, and everyone was always nice. Maybe I watched too many sitcoms; this was before I realized what was going one behind the scenes on “The Cosby Show,” obviously. I’m the first to admit that my standards were too high. I had some adjustments to make, as no one can live up to what I’d hoped to find when I crawled out of my cave, into the real world. No one hugs it out in thirty minutes and wears matching sweaters all the time.   

Since then, I’ve learned that, some people’s idea of familial love, isn’t offered unconditionally. Instead it’s a weird version of “like,” contingent on bizarre sets of ever-changing rules. For example, one must emphatically support, without question, whatever thing the family member treats as religion, such as pseudo-scientific rants about American gluten causing not only obesity, but also diabetes. Questions, or even nods will be taken as argument, for these types of people, and therefore soul-crushing doubt, of their very being. Thus, you might as well consider yourself out of the will. You can change the topic to one you feel more comfortable discussing such as: letting your child fly cross-country, unaccompanied; why your kid’s autism diagnosis appears to be bullshit; why your brain surgeries were a waste of time; or, when you think it’s time to step up and be a “real” parent to your kid.

After our tears were shed, and our bad day (well one of them, this weekend), we needed a treat; so we went OUT for dinner, and we had (fried!!) ice cream. I love my family, and could not be more grateful for my guys. It's too bad that some people are willing to miss out on this!

After our tears were shed, and our bad day (well one of them, this weekend), we needed a treat; so we went OUT for dinner, and we had (fried!!) ice cream. I love my family, and could not be more grateful for my guys. It's too bad that some people are willing to miss out on this!

That last one was a joke, supposedly. Ha. Ha. Ha. In general, I think I’m a fucking riot, and I’m the first to poke fun at, well, everyone, including myself. Here’s some ammunition, in case someone wants to make an actual joke about me, instead of pretending that an asshole comment about me was a joke-in-disguise: when I’m not accidentally interrupting someone, I’m talking too loudly; I am incredibly clumsy; if you’ve ever see me dance, I make Elaine look graceful; I can’t read maps, and once got so lost in an airport that I needed a police escort to leave (after driving around for TWO HOURS).  

With this battle royale, it’s not important, anymore, who’s right, or wrong – we’re obviously right, or I wouldn’t waste my time and energy talking about it, duh! (and two days writing this) And, its not about who has said what, to who – both sides have said stupid shit, including me. What is important, in family drama like this, in any family, is how quickly, and easily a simple “I’m sorry,” could have, and still can, fix everything. If you follow it up with a side-helping of “I was an asshole” it’d be like the sky parted and Jesus himself rode down on a unicorn.

It occurs to me that sick people don’t have the market cornered on this kind of bullshit, do they? I googled mothers-in-law, and “difficult,” to write this. I was a shocked at how many results there were. But, another thing occurred to me: some people, mothers-in-law or not, just suck. Our little falling out started because I was sick. And, while the event in question revolved around a particularly hairy episode of my illness, mothers-in-law, and difficult people, in general, are walking joke-targets, for a reason.

Shows like Everybody Loves Raymond wouldn’t have run for 325 seasons if mothers-in-law weren’t easy marks. The particular species of mother-in-law that we are dealing with, the ones who cause a stink, pout about it for six months, refuse to apologize, and then blame the wronged party, go by the Latin genus name: buttinski-painius-in-the assius. This is not to be confused with the sweet kind of mother-in-law: helpfulius-amazingius. I’ve got one of those too, and I’m beyond grateful for her.

This is Bryon's new favorite picture of me. I was being silly in the bathroom; but I think it suits this situation :) It says "kiss my sweet booty," to anyone who can't be nice to my family! Also, it says, guess what?! I love how easy it is to be nice to my wavy/curly hair with these soft curling rods!

This is Bryon's new favorite picture of me. I was being silly in the bathroom; but I think it suits this situation :) It says "kiss my sweet booty," to anyone who can't be nice to my family! Also, it says, guess what?! I love how easy it is to be nice to my wavy/curly hair with these soft curling rods!

Everyone’s mother-in-law morphs into the buttinski, every once in a while. I’m excited to become a mother-in-law, one of these days. But, I keep an ever-evolving list for myself, as I watch situations like this one evolve (devolve?), of things I promise myself I won’t do, and things I will try to do.

Apologize

If someone tells me that I hurt them, I promise not to dictate their feelings; or worse; I promise not to excuse them away with my own bullshit. It takes courage for someone to admit that they are hurt, because it upsets the status quo ecosystem of a family. If someone tells me that I hurt them, the starting place is not to tell them their feelings are wrong, but that I’m sorry I was the cause.

Continuing to Value Collin…and the Future

When Collin was born, all other things in the universe ceased to matter. My sun rises when he wakes, and he turns the tides with his moods. There’s nothing he, or his future wife could do that would make me angry enough to keep me away. If his wife asked me to apologize because she dreamed I’d hurt her, I’d do it. Okay, future-psycho; I’m sorry, can I hold my grand-baby now? And, can we go to family counseling?

The Go-Between

I promise that I will never allow my son to be a go-between in a family drama. Bryon attempted to avoid, and mitigate this confrontation, for the past six months, by being a mediator. This resulted in the world’s worst game of telephone, increasing the anger of people who felt they weren’t being heard. Diplomacy only works in affairs of the state, not in family affairs. Now, everyone is angry at everyone else.

Sit on Anger

Bryon made me sit on every angry reply, for days, or sometimes weeks. It made me furious, at the time; I was so furious, that it usually cost me another day in the waiting cycle. He was right though. With the exception of the last message I sent, which was basically a “fuck you,” sent in, surprise, anger, I kept my cool. I learned a lot from being forced to be rational, even in the face of fury. I promise to always sit on anger; no good comes of it.  

I know it’s a really arrogant attitude; but, when I wake up tonight, for the fourth or fifth time, with another muscle spasm that brings tears to my eyes, and makes my husband lose sleep, as he watches me with worry, I can’t help but feel like this is an additional, unfair burden. When I swallow all the post-op pain meds that I’m allowed for the day, and it’s still not quite enough, and I stare at my husband, who can’t figure out how to handle this situation, without losing his best friend, who is his dad, I can’t help but feel like the universe has been a little unfair in handing out the shit cards, from our life-deck. Sure, there’s starving children in Ethiopia, but the starving kids in Ethiopia aren’t also getting threatening letters from their mothers-in-law about how they’re deranged.

So, this weekend, aside from figuring out how to fend of my husband, who is practically chasing me down with heat and ice, insisting that I rest more, and do less; because being sick is a constant part of my life, I had to deal with drama. I want the only drama in my life to be hiding from the ice pack count. No matter what else is going on, stress-y family or not, we still have Rachel’s sore neck vs how much painting she should be allowed to do this week vs how many walks she wants to take today, vs whether or not that means she should also be allowed to stay up late. Being sick, like it or not, effects everything. It’s really shitty that any energy, physical or mental, is taken up by a grown woman who can’t apologize, for literally, and I shit you not, stamping her feet, and storming out of another grown woman’s house, after screaming at the sick person, in front of her child.

And, besides trying to enjoy the Fourth of July, and trying to find a fireworks display for Collin, we also had to have a talk with him about why Nana doesn’t want to come see him anymore. Can’t? Won’t? What’s the right choice? Maybe she’ll come to her senses one day, but it truly doesn’t look hopeful; not based on her messages to us. It’s a sad day when a Nana’s pride wins out over her grandson, but that’s what we’ve come to. A short while ago, we were willing to drop the whole thing, and just let it go, but Nana wanted to “win,” and make sure we knew that we were to blame for everything. Alas, no; it wasn’t to be. Why? Oh why do people have to behave this way?

Families are so complex and are filled with intertwining personalities that, if they refuse to recognize the importance of others, and especially of others’ feelings, can never co-exist as individuals, and therefore, never as a unit. It’s such a shame, when the pride and needs of one person can blow up the entire thing. One thing is for sure, MY family, is OUR family. We are a unit and a team, and we function as one. Where one of us goes, we all go. What one of us feels, we all feel. There’s no shaking this team’s foundation. And, despite how shitty this whole situation has made us feel this weekend; and, despite how heartbroken it’s made us to lose Nana this weekend, we are happy to discover how united it’s made us, yet again.

And, yes Bryon, I’ll ice my neck tomorrow because I finished my peacock painting today.

I made a thing! Painting, a thing I always loved, is something I've picked up again, much more seriously, since surgery. I'm getting much better at it, and while I'm still not great at it, I'm getting happier and happier with my results. By "happier," I mean that I rarely want to throw my results in the garbage anymore. Look! A peacock! A peacock with a tail that has been hit with radiation, and as such, it's abnormally large!

I made a thing! Painting, a thing I always loved, is something I've picked up again, much more seriously, since surgery. I'm getting much better at it, and while I'm still not great at it, I'm getting happier and happier with my results. By "happier," I mean that I rarely want to throw my results in the garbage anymore. Look! A peacock! A peacock with a tail that has been hit with radiation, and as such, it's abnormally large!

Inconveniences of a Hospital Stay

There’s so much to say about surgery #2 and my hospital stay. So much! So, I’m not going to pack it into one blog post. That’s no fun! I’ll be writing a few over the next few days/weeks. I mean, I was there for FIVE days! That’s a lot of hospital fun, right?

The Bathroom

I was in private room, with my own bathroom. They showed us how to unhook my monitors and IV, so I could use the restroom, anytime I needed to. This seems great. However, I was on so many painkillers that both posed a problem. Opiates mess with muscle control for urination, for some people, so no matter how badly you have to go, sometimes, it takes forever to remember how to get everything to work, once you are sitting there. And, the other thing? Not happening. No matter how many stool softeners they gave me. They might as well have been trying to soften an actual stool.

Couple these problems with the stage fright of sitting in the bathroom, knowing that at any second, a nurse/physical therapist/orderly/doctor/delivery person/rabbi/superhero/vitals check/homeless person/fry cook/wandering minstrel was going to come in. It seems like, every twenty seconds someone does, in the hospital. So, bathroom things just don’t “happen,” the way they should, while you are there.

My toilet was also about six inches too tall for me. It was obviously handicap accessible; I’m not. So, my short-person feet dangled well above the ground, which made “going,” surprisingly difficult. I was shocked at how big of a role physics actually plays in “going,” and I remembered this ridiculous ad that I saw a while ago.

So, I improvised and put a basin on the ground, upside down, for my feet. Voila, a poor man’s (or woman’s) squatty potty! I’m a genius. It actually helped. And yes, I have now ordered a squatty potty. I’m sold on its effectiveness. Since I’ve been home from the hospital, I’ve been putting random objects in front of the toilet to “assist,” because of the challenges in “going,” presented by massive amounts of post-op painkillers.

Laugh if you must, but I challenge you to huge doses of morphine coupled with Percocet, muscle relaxers, and nerve meds. Throw a stool on the floor in front of your toilet, and suddenly, it’s nirvana, instead of a cramp. Whatever works, right? I’m just really excited to see if, when it arrives, my poop will look like rainbow soft serve. Because right now, with my imitation squatty potties, it most certainly does NOT.

The Sponge Bath

I have a massive incision on the back of my head. This happens when surgeons insert a titanium plate in your skull. Because they leave a huge incision in your head, they prefer that you not get it wet. Persnickety surgeons, and their preference to avoid life-threatening infections. Of course, they can go overboard, I think. My surgeon, for example, made me wash, for five days, before surgery with this soap, to avoid surgical infection.

Daphne says "hi!" She also wants to know why I made her pose with the stinkiest soap on the planet. The pink is a lie. It looks like it might be perfumed to smell like berries or something pleasant. It isn't. It smells like horror.

Daphne says "hi!" She also wants to know why I made her pose with the stinkiest soap on the planet. The pink is a lie. It looks like it might be perfumed to smell like berries or something pleasant. It isn't. It smells like horror.

I felt like I was taking Sybil showers. The stuff smells terrible. There are no words. Also, I felt like he must think his patients are filth-balls. I couldn’t imagine what kind of squalor he thinks we must live in, especially in comparison to where he must live. What does he think my normal bathing habits are like? I know that it’s just standard practice, and he probably doesn’t imagine that any of his patients are filthy. But, it makes me imagine that there must have been someone rolling in the mud pit, outside their double-wide, with the litter of topless dancers they just had bred, before they came in for their cranioplasty. You know the idea: there’s always a reason for the sign, or the procedure; someone always did something crazy, otherwise there wouldn’t be the rule/practice/standard, in the first place.

Someone must've done it once, right? Just like maybe, someone, came into pre-op, totally filthy? Maybe?

Someone must've done it once, right? Just like maybe, someone, came into pre-op, totally filthy? Maybe?

His post-op instructions were a lot more lenient. I am allowed to shower with whatever I want, just so long as I didn’t get my incision wet. I am even allowed, once I leave the hospital, to wash my hair, without getting the incision wet. That meant, in the hospital: sponge baths. I know some people (men) get excited by the prospect of a sponge bath. Nurse plus woman, plus sudsy moisture, equals hooray! Let me disabuse you of that fantasy with the following terrifying tale.

Each room at UCLA is assigned a nurse and an orderly. The orderly does the vitals, the errand running and things like sponge baths. This clears up the nurse to do the patient care. It was a beautiful system, and one that, I’m sure, is not exclusive to UCLA. With two exceptions during my stay, my orderlies were awesome. My sponge bath orderly was a woman, otherwise, I’d not have accepted the offer to clean up. The problem: she was about 300 pounds. Her weight being an issue didn’t cross my mind as a challenge. It should’ve.

No one wants to get naked in front of a stranger, and allow them to suds them up. Or, maybe they do. I’m sure there’s a Craigslist group for it; I don’t know. Anyway, to agree to do it, for me, is a big deal. It means two things happened: I felt absolutely filthy, and the person offering was tolerably comforting, and seemed competent at her job. I generally don’t think it’s okay to pick on people for their weight; however, I also don’t think it’s okay to pretend that your weight is not a problem, if it interferes with your ability to do your job properly; or, if your doctor has told you that you either have to lose a hundred pounds, or your foot.

As I was being sponge bathed, my orderly became so sweaty that she soiled through her scrubs, and not just in typical sweat spots, the entire outfit. Her hair was so saturated with sweat, that her fluffy ponytail became a single, moist, noodley strand of hair that stuck to her neck. She kept wiping her forearm on her face, to wipe sweat off of her forehead, and out of her eyes. That she was wearing gloves, seemed pointless when there was so much sweat involved. She was so out of breath, I thought she might faint. It was a typical sponge bath on my end, one where I gave her chase down the hall, and made her retrieve me, after I’d climbed up the draperies. I’m not sure why she was so exhausted. Kidding. I sat in a chair and barely moved, except when she instructed me to lift my arms.

I wasn’t sure what to do. Do I stop her? Tell her that I felt clean enough now? I felt terrible that she was in such discomfort; but, I was pretty uncomfortable too. I was freezing, soaking wet, naked and half-filthy, half-clean. I was also, you know, two-days post-op from brain surgery. It was a terrible situation. I am, generally, a sweaty person when I exercise, so I felt badly for her. I really did. But, this was something else. Was she going to have to go into her next patient’s room like this? Could she change scrubs? This was humiliating for both of us. A sponge bath is always awkward, but this was something else altogether.

When she finally finished and left, Bryon and I just looked at each other and had nothing to say. He finally said, “well, that was terrible.” I think that said it all. I added, “So, I take it that was not what you had in mind for a sponge bath fantasy then?”

My next orderly was a 6’5” man. I was far too uncomfortable to ask Captain Handsome to suds me up (Bryon outranks him as Lt Col Handsome…aww). So, I had to wait another shift. The next one was the orderly that we called “the sidler.” I couldn’t wait for her shift to be over. You never heard her come in. She didn’t actually do anything when she did come in, but she did manage to make the whole room very uncomfortable. Again, I had to wait for the next shift.

When I felt comfortable again, it had been several shifts, and I felt filthy. This orderly gave us tons of supplies and said that Bryon could do it from now on. Hooray! Finally, someone I knew I felt okay seeing my bits and bobs. And, I think he’s pretty happy with that sponge bath scenario too. But, that brings us back to the hospital bathroom problem. Every time you go into the bathroom, and start the routine, you know you are going to get interrupted. Now, it wasn’t just trying to “go” in the bathroom to be worried about, it was being naked and scrubbed down, by my husband, no less. Oh God, the pressure!

I told you he was Lt Col Handsome :) This man's charm wins people over wherever goes. It's no surprise that the ladies at the hospital thought he was the most amazing husband on the planet; this is something I obviously already knew. He does everything short of taking my pain on for himself. These men exist, and we're busy training one up for one of your daughters. He'll be ready in about twenty years. He's learning from us; so, we expect your daughter to be brought up to be an appreciative and equal partner.

I told you he was Lt Col Handsome :) This man's charm wins people over wherever goes. It's no surprise that the ladies at the hospital thought he was the most amazing husband on the planet; this is something I obviously already knew. He does everything short of taking my pain on for himself. These men exist, and we're busy training one up for one of your daughters. He'll be ready in about twenty years. He's learning from us; so, we expect your daughter to be brought up to be an appreciative and equal partner.

When the Sun's a Black Hole

What no one tells you, when you finally get a diagnosis of a weird disorder, is that things like Chiari don’t like to play alone. “Yaaaaay!” You think to yourself, when the doctor gives you the grim news that you need brain surgery. Sure, that’s fucked up, but it means that you have hope of feeling better; and more, it means that you actually have been feeling like the shit you’ve been describing for months (or years) prior, and someone finally believes you. More, it means that the doctor believes you. He can point to it on an MRI, a tangible result. But, he neglects to tell you that the thing that you have, it’s just the beginning.

I learned this week that meds that I get to take forever, or maybe not (who the hell knows, anymore?) have made me allergic to the sun. I remember seeing a documentary once, when I was a kid, about a child whose mother had to keep her kid inside, twenty-four hours a day, shades drawn, because even a sliver of light would cause him to blister and peel, screeching in agony. Is this my future? I hope not! And, it’s likely not.

The other day, I was outside painting (working on a large sign for my boy, for Autism Awareness day—which he didn’t appreciate enough, but I’m not complaining—okay, I am), and noticed that my arms were itchy, and covered in red bumps. Since it was especially on my hands, I have enjoyed the three days since, trying to hide my hands from the public, so they don’t think I have a communicable disease, like the measles, when I do things, like complete a credit card transaction. Nothing says, “I’m not a leper,” like cramming your thumbs into the sleeves of your shirt, on an 80-degree day, and pretending it’s normal.

This is a damn big sign, right? Lots of time outside painting, lots of work, and it got over 150 nails with lights threaded through it too. He does actually love it. I just require a ton of praise for anything I do. I'm hard to please.

This is a damn big sign, right? Lots of time outside painting, lots of work, and it got over 150 nails with lights threaded through it too. He does actually love it. I just require a ton of praise for anything I do. I'm hard to please.

I’m really fair-skinned, and I’m always the first to burn. I don’t tan, I burn. Apparently, I’m Irish? I’m not even really sure. I’m one of those American mutt-breeds, with no real link to ancestry, except that I’m 100% positive that I’m Dutch. Do the Dutch burn?

Anyway, I’m careful to use sunblock; I cover up with lots of clothing, and even wear a hat. Yet, it was so warm, I took off my paint shirt, and worked out there in just a t-shirt, working away. In almost no time, I was covered in welts, not just the telltale ache of a burn.

I look forward to wearing flattering SPF50 or higher sun protective clothing. You know the type, right? Either flowing sundresses that look like they belong on The Golden Girls (don’t get me wrong, I love the GGs), or camp shirts that make me look like a park ranger (again, not that I don’t like park rangers, I’m just not one). I’ve acquiesced to a floppy hat, but I feel like this is a bridge too far. We’re going to Universal Studios this week, to celebrate the boy’s birthday, and I was literally browsing Amazon, trying to figure out ways to accessorize an SPF potato sack shirt with a belt. Help me.

A few days later though, the meds became too much. The rash was growing, instead of receding, and I’d not been in the sun any additional time. Plus, I was feeling terrible. I kept repeating how I just couldn’t put my finger on what felt terrible, just that I felt so awful. If you’d have asked, I’d have said that even my fingernails felt icky. All I wanted to do was lie down, but even that felt yucky.

I don’t read side effect lists of medications when I start them anymore, because I’m a hypochondriac. If it says that it’s possible to become spontaneously pregnant with a whale, I’ll be sure to birth the world’s first human-whale hybrid, on the spot. So, I usually give a med a fair shake, and then if I feel iffy after a while, I check into it.

This had been over a week, so I looked at the list, and under the, “if these side effects happen, stop immediately and contact your doctor,” were rash that looks like red pinprick dots, feeling sick all over, and irrational anger. Did I not mention that the sight of my husband made me so angry that I was having trouble restraining myself from not punching him in the face? My husband, who happens to be the most perfect partner in the world, and I wanted to smack him, just for asking, “what’s wrong? Why are you so mad at me?” I don’t know! But, stop being!

Do you like my "Honey, I'm the toilet, and getting ready to shower, but look at this rash that I'm suddenly, and immediately so concerned about that I couldn't wait for a more appropriate time to photograph it, and tell me what you think," photo? What? You've never texted your husband from the toilet? Okay, then you are a better, and classier person than I. So yeah, that's my bra on the floor, and those are my legs. And that's my hideous rash, and my dry hand, with all the moisture sucked out of it from painting a wooden board for three days on end. Meh, I text my hubby on the toilet. I could do worse things. I could've slapped him for existing.

Do you like my "Honey, I'm the toilet, and getting ready to shower, but look at this rash that I'm suddenly, and immediately so concerned about that I couldn't wait for a more appropriate time to photograph it, and tell me what you think," photo? What? You've never texted your husband from the toilet? Okay, then you are a better, and classier person than I. So yeah, that's my bra on the floor, and those are my legs. And that's my hideous rash, and my dry hand, with all the moisture sucked out of it from painting a wooden board for three days on end. Meh, I text my hubby on the toilet. I could do worse things. I could've slapped him for existing.

Yeah, so I’ve stopped that drug. I’m hoping that I’m allergic to the drug, and not the sun. I also hope that I'm not allergic to existing in the same house as my husband.  It would suck to be allergic to the sun. I've been off of it for almost 48 hours now, and I can already tolerate my husband's breathing much, much better, so thins are looking up.