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.

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!

Scatter-Brained

I have so much to talk about! I can’t even decide what to say, or what to say first. I could write a zillion individual posts, in detail, but it’s too much. It’s why there’s not been one in a few days; because, I keep writing them, and they are too long and boring. So, here’s a paragraph on random things, not connected, that are all going on at once, right now!

Cats

Soap + Box = Soap Box Alert

Soap + Box = Soap Box Alert

Mittens had to go back to her “owners,” who it turns out, live in our neighborhood. I was so devastated that I cried for a full day, not entirely because I missed her (I do, of course); but, because I feel like I failed her. Cat owners who insist on allowing their cats to roam, under the misguided idea that they are allowing them to follow their natural instincts, are doing them a disservice. A domesticated cat’s natural habitat is the domestic living space. They don’t deserve to follow their “instincts” to prey on diseased pigeons and rats, and to fall to predators like angry gardeners with antifreeze, cars, teenagers with pellet guns, or even “natural” predators like hawks or coyotes. Cats that live, exclusively, indoors live up to twice as long as cats who are allowed to roam, and they have fewer health problems, or injuries from predators or other cats. So, I cried for Mittens.

P.S. Mittens cried too. For days. Outside my kitchen window, begging to be let back in.

My cats are happy indoors :) See. This is them greeting me when I came home from dropping Collin off at school.

My cats are happy indoors :) See. This is them greeting me when I came home from dropping Collin off at school.

Best Friend’s (Temporary) Return

IMG_3110.JPG

My return to myself has been, and will be, forever slow. I’ve learned that half of the reason that I don’t go forward, is that I’m afraid. I’m afraid of pain. I’m afraid that the next thing I do will be the thing that tears the plate from my skull, and ruins everything. I’m afraid that the next thing I try will be the thing that I can’t achieve, and it will be the thing that I learn is my limit. I’m afraid to push. I do it anyway. Slowly, steadily. Inch by inch. I am climbing my way back. And, sometimes that inch feels like it’s only a centimeter of progress because my body reminds me that even though I’m trying, I have to respect its new barriers.

Alas, I’ve had to wear my c-collar again, lately. There’s nothing more defeating to progress than Velcro-ing those straps. Nothing feels worse than the relief of that collar. I hate how much better it feels when it’s on. I hate that I need it. I hate that I want to wear it, right now. I know that I will be able to throw it back in the closet again….soon. Why? Because I didn’t need it randomly. I needed it because I strained my neck by working out a little too hard. I strained t by pushing. Pushing. Not being afraid. I strained it by becoming me again. God damn, I’m going to come back. 

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The Shoulder

I’ve mentioned on FB that I am having shoulder surgery. It’s tomorrow. Holy crap, right? Literally, I keep forgetting about it. That’s how, off-the-radar, surgery has become to me. I have had a shitty shoulder, for years. It’s not terrible. I could probably live with it forever, if I didn’t want to lift heavy weights again. I can’t even carry the backpack at Disneyland, or my purse on that shoulder, anymore, as it is now. So, I want to lift, and I want to do it with good form. I’m done being broken.

Turns out, I randomly picked some awesome doc at USC. He’s a sports med guy who has worked with some really awesome teams; and he is a shoulder specialist. He’s also Benjamin Button, or something because he looks 19, but has a resume that makes him sound like he’s 140. His resident, I shit you not, looks like a GQ model, and also 19. USC puts something in their water, I think. I’m excited to try their IV’s.The best part about this whole thing, is that Tricare, covers everything, except the sling. I have to go out tonight and buy a damn shoulder sling.

Tricare: Here’s $20K (or however much shoulder surgery costs) for the surgery but $19.99 for a sling is a bridge too far! The patient should pay for that!

Crop Tops Over 40

Bryon, bless his little heart, is not great at picking gifts for me, on his own. It’s not his fault, I buy so much shit, that by the time a gift-giving occasion comes up, I just point at whatever I’ve most recently bought, and say, “that can count as my birthday/anniversary/Mother’s Day present,” and it does. No shopping required. But, last year, for my birthday, Bryon tried to pick out a present for me. He started at my favorite store (Anthropologie), got my size right, got my general sense of style. He was on track. But, somehow, he missed. He bought me a…crop top. I was a bell-sleeved, loose-fitting, bohemian-looking crop top, with a lace up front. Don’t get me wrong, if I were twenty, and going to Coachella, maybe? It is “me,” but young “me,” maybe.

I didn’t have the heart to take it back. Plus, I didn’t hate it. So, it sat in my closet, unopened, until we started cleaning out the closets this weekend to get ready to move. Thus, the debate: can a woman, over 40, wear a crop top? I said, “if she wants to,” but I’m not going to, unless I’m at the beach. He said that I pulled it off. But, his opinion is not to be trusted, based on times his spontaneous compliments are uttered (when I’m brushing my teeth, for example). I am on the fence. Ignore the no makeup and horrid hair. It was a house-cleaning day; thus, you can excuse the pants pairing too. Not sure it “goes.” Hmmm.

Hideous picture! Also, I'm really looking forward to getting out of this "master" bathroom. What a joke for a bathroom! I look like a gypsy.

Hideous picture! Also, I'm really looking forward to getting out of this "master" bathroom. What a joke for a bathroom! I look like a gypsy.

Moving Scatter

My brain is doing this right now: we don’t know where we are going to live and we are leaving in about a month; I forgot to take my Comic Con costumes to the dry cleaner; what about my plants when we move; I have to wash my curtains before we pack them; I’m a horrible person, but, I wish that damn hamster would die before we move; if the movers break my WW kiss statue, I’m going to lose my shit; I forgot to call USAA to up my jewelry rider; I have to go to the post office; should we fly to San Diego or LA when we come back in July?; I need a car wash; what if Collin can’t handle public school?; I hate June gloom in LA; why do the stupid movers have to be here on my birthday?; I’ve been eating so many pickles that when I work out, I smell like pickles; I can’t believe I have to wait another whole year for more Riverdale; why do all my FB ads target me for Dia & Co, when I’ve just busted my ass to give up soda and chips?;what if the movers break the glass in our antique furniture?; what if the movers tear our giant painting?; what about the dollhouse?; dry cleaning; alterations; whoops; I forgot to send my summer contract. Oh. And WHERE ARE WE GOING TO LIVE????

Anyone want to live in my brain right now?

This is why I can’t focus up and write anything decent or stay on topic. I am losing my mind, at the moment. And, tomorrow, I won’t be able to type very well. I will only have a left hand! Agh! And, I have a great idea for a painting. Maybe, I will learn to paint with my feet, or my mouth, and become a you-tube sensation. See where my mind is at right now! I need a drink, or something.

A Sh*tty Post

Confession: This story is almost a month old…it took me that long to get my shit together and finish this! Sorry!


But….

I’m ready to talk about something totally, absolutely, and ridiculously, humiliating. Are you ready?

No, really?

Are you ready?

Because, it’s about to get all kinds of gross, and personal, in here.

I know that I share here. It’s a nice outlet. My sister has called my “outlet” self-indulgent, which, at the time, I tried very hard to take as the insult it was intended to be. It was hard though, because it occurs to me that almost all communication, except for true listening is self-indulgent. We all want to be heard. So, we talk, write, shout, and send smoke signals.

I know that I’ve been silent for a while. I’ve been…processing…shall we say? I get to do that. I mean, I’m a little fucked up. In the past 36 months, I’ve had my head shaved twice, my skull cracked open, and titanium rammed mere fractions of a millimeter from my brain.

As a quick addendum to that titanium; I’ve recently learned that, at any given moment, my body may decide that the titanium plate and screws, are no longer welcome. It may begin rejecting them, by propelling out the screws at rocket-ship speeds.

Okay, they will propel at slow, glacial speeds. However, any speed at which a screw propels itself from my skull, and through my scalp, feels too fast. The first sign of this will be that I’ll feel the fucking screw…in…my…scalp! Well, I’ll feel it coming through my scalp, like a This Old House episode gone horribly, horribly wrong.

Just, imagine me, brushing my hair that I haven’t cut in two years, because it’s now my security blanket (we’ll get back to that, and why I look like a filthy bag lady – not Rapunzel) and, wham! Screw poking through my skin!

Now, imagine how often that I check my scalp for suspicious lumps. I’m like a pubescent boy who feigns concern for his girlfriend’s breast health. A number with exponents per times per week, I ask Bryon, “was this lump here before?” I ask him so often, in fact, that he always says, “yes,” without even checking. How dare he not take my irrational concern seriously?

Aside from the whole surgery and imminent screw loose (yeah, I get it) thing, I’ve also lost my family. Lost is a weird word choice. I shed them like an extreme form of molting, but the feeling of loss is still there. I can’t exactly eat my family, the way a lizard eats its skin when he’s done shedding and growing. That’d be gross. And, criminal. And, I don’t want to. I’m a vegan.

My therapist suggested that I consider myself adopted. Not to diminish the experience of true adoptees, of course. Still, lots of parents either give up, or are forced to give up their children because they are unable to either physically, or emotionally, provide for them. I’m not much different in that regard, except that I’m an adult. So, now I’m adrift in the world.

Parentless.

That’s a lot of shit to deal with in a relatively short amount of time.

I’ve gotten side-tracked.

For a long time.

Sorry!

I promised you a gross confession.

Physically, I’m doing the best I’ve been doing since I got sick. Brace yourselves: I’m running. No shit. I’m capable of running! R-U-N-N-I-N-G again! Not a lot. And, not fast. And, not every day. But, every step I take that is faster than a walk, is like the greatest step I’ve ever taken. It’s how I imagine it must’ve felt to walk on the moon.

I'm not saying that I high-five my WW poster after treadmill runs, but I high-five my WW poster after treadmill runs.

I'm not saying that I high-five my WW poster after treadmill runs, but I high-five my WW poster after treadmill runs.

I’m on the least amount of drugs I’ve been on in at least three years. In fact, It’s the first time that I’ve not been on a daily opiate regiment. But, when it’s bad, it’s still really bad. I still have an opiate prescription for when I get a massive headache that can’t be controlled by other means, especially because my headaches, when I get them, last for days, because they can be caused by my wack-a-doodle intracranial pressure, and that pain can’t be controlled by a Tylenol.

But, there’s a not-so-well-kept secret about opiates: they back up your poop system. For most people, with normal colons, this is no big deal. When they are done taking them, they eat a couple of prunes, and they are good to go. This is also no big deal, because most people who take opiates don’t need to take them for very long, or very often.

I wish I had a regular colon. Sometimes, just seeing the Oxy bottle in the drawer is enough to block me up for a month. My colon has a mind of its own, and it is susceptible to the power of suggestion. I think it might be a bit of a hypochondriac, frankly. If it even hears of a negative condition, it catches it. Yeah, that’s right, my colon can hear. Can’t yours?

A Pepto commercial for traveler’s diarrhea comes on, and my colon becomes convinced that the mailbox equates to a trek through India, stopping to drink from a well that pulls ground water from a stagnant creek that the locals use to rise the diapers of children infected with cholera. Strangely, I can see hundreds of commercials of Jamie Lee Curtis and her lady-yogurt, and I never find myself being regular.

tumblr_m0jm55SkGt1qk455to1_500.png

 

This would be no big deal, except that I have (confession time) yet another rare and, this time, humiliating, medical condition: bile salt diarrhea. Bile salt diarrhea can be caused by a number of things, but it’s a relatively rare side effect of removing the gallbladder. Guess who has two thumbs and has had her gall bladder removed?

It’s hard to take a picture of yourself with two thumbs! Ha! This is from me grading the other day, anyway.

My god, my thumb looks HUGE!

My god, my thumb looks HUGE!

 

One of the functions of the gallbladder is that it regulates how much bile the stomach uses, and then gets dumped into your intestines to continue digesting your food in the next stage of digestion. Without it, in some people, the stomach has no idea what to do when food hits it; so, it dumps bile straight into the intestines. Because the intestines are not equipped to digest huge amounts of bile, it rushes, straight through your intestines, along with the undigested food. The stomach has a difficult time turning off the bile dump, and you will continue to pass this bile, rapidly, until it turns off. Of course, you’ve smartly stopped eating by now, because you’re already in the bathroom. Plus, it’ll keep dumping bile through so long as you are eating, and your stomach is sending the signal that there is more food to digest.  

As this problem became more prominent, I sometimes ate, practically, on the toilet, as that’s how quickly my food passed. I never held anything in longer than 15-20 minutes. We are a family with no shame (okay—gross, sometimes); so, we would (and still do), occasionally, play the corn race. When we eat corn, we see who “sees” the corn again first. I always won. By days. Because I always saw it again within minutes, I continue to be the reigning corn race champ! Undefeated!

I have to take my victories where I can get them. I’m not exactly going to win any Olympic gold medals in my lifetime.

As you can imagine, this is a relatively difficult problem to diagnose. You go through the following stages:

Did I seriously not make it to the bathroom last night? That was totally embarrassing. Hope that doesn’t happen again.

  • OMG. Again?
  • Again?
  • Wait. This is ridiculous.
  • I’m too embarrassed to tell the doctor that I shit myself…regularly.
  • Okay, I should tell him, because I saw an entire undigested piece of pizza last night. Am I getting any food?
  • Hang on…if I’m shitting everything I eat, why are my thighs still so big?
  • Nah, I’ve got this under control! I can drive the kid to school, without a towel under me, so long as I don’t eat before noon, and not after 9 pm.
  • Wait…that’s not normal.
  • Okay, sucked it up, and the doctor said to add bulk fiber and take Immodium. He didn’t seem phased that I have to take 20 to make it stop. 20! Hmmm. Can you OD on Immodium? Stupid military medicine.
  • Whelp, it’s been six months, and now, I’m wearing Depends to a job interview. Is this a reasonable solution? What if I get the job? Is this the long-term plan? I can’t work two hours away, and wear Depends!
  • Do Depends show through these pants? The students will totally be able to tell.
  • I’m so fucking hungry. I can’t go on not eating through a full day of teaching and driving, just so I don’t have to wear Depends under my clothes!
  • Back to the doctor. Fucking military medicine.
  • Ugh. Gastroenterology. Of course, I have to do a lower GI thing with the poop scope.
  • Phew. This is fixed with a simple med. Why couldn’t this have been easier?

So, yeah. It’s easily controlled. One simple med, and I’ve never had another problem. It slows down the digestive process, and I’m totally fine. But, if I take the digestive slowing med, and I have a headache that week, where I have to take opiates, I’d never go to the bathroom again. I think my colon would rupture. I say that jokingly, but in reality, it’s a possibility. If I had to take opiates, for say, weeks on end, and I took my slowing med, I could actually die, eventually. I have to be super careful to monitor the ol’ pooper.

Stool softeners: not just for post partum mommies.

After a headache that requires opiates, it takes anywhere from a week, to a month (not even kidding) to go again, “naturally.” We call the ensuing gut swelling my poop babies. And, they hurt. I can’t bend, twist, or move, because they get pretty fucking big.

I’ve learned that the best thing to do is to get some control over it, pretty early, before I look three months pregnant with Collin’s poop baby sibling. Ex-Lax has become my friend. Barring that, Ducolax suppositories. Please pray for me, that it doesn’t come to the second solution very often. They suck. If you’ve ever needed one, you know why. Dear Hera, the fire.

But, Ex-Lax can take more than one dose, and it’s a delicate balance. A very delicate balance.

Take a dose. Wait twelve hours. Nothing.

Take another dose. Wait twelve hours. Still nothing. Ponder whether you want to live or die.

Take another dose. Wait twelve hours, and know you are moving towards the Ducolax in the morning. Also know that the third dose (or the previous two) can open the gates of hell at any moment, and if it does, it will be horrible because it took so long.

Wake up at two a.m. and hate your very existence.

This is what happened to me over the weekend.

From the hours of two a.m. until nine, I pooped. I pooped everything I’ve ever eaten, in my life. I pooped everything everyone has ever eaten in their entire lives. Only it wasn’t like this:

 

At least not at first. It’s like passing softballs through a straw, until you get to the end; when all of the sudden, it’s like Jeff Bridges on the toilet, and you wish you were dead. It’s difficult to determine which is worse: softballs or Jeff Bridges. Softballs come with cramps that and blood; Jeff Bridges comes with, well, Mississippi Mud.

Then, you fall asleep on the couch, cold and sweaty, and you can start all over with the digestive slowing meds. For the next week or so, you get to deal with blood and the dreaded “fissures.” Seriously, how much do you know about me, right now?

 

I switched my insurance to Tricare Standard, instead of Prime, which gave me a new primary care provider. She pointed out that my digestive slowing med came in a different format, which has changed my life once again, and made it even more effective, and made it work even better, if that was possible, so I’m gloriously happy. We’ll see what happens the next time I have to take an opiate.

 

But, I’ve got a system to manage my co-“conditions.” It may not always be a comfortable one, but it works. It may sometimes require Ex-Lax and me laying on the bathroom floor, and praying that if there’s a God, I can have a serious talk with him about why he made me out of spare parts. It also may make me eternally grateful for steroid cream – did I mention that crapping straight bile is equivalent to vomiting bile out of a hole it’s not designed for, so it causes surface burns to your skin? Yet another time I find myself eternally grateful for Big Pharma and western medicine.

 

So, there’s my gross confession story. As I was lying on the couch this weekend, cold and clammy, I thought to myself: someone would love to know about this glamorous part of being sick that has previously gone unreported. Am I right?  

 

This is Spinal...Damage?

Sometimes, I wish I weren’t right all the time. At least, I wish I weren’t right all the time about my own body. Wait, no; Judy Blume taught me to trust my own instincts about my (female) self. Yay periods! No, that’s still not right.

Okay, mostly I wish I weren’t right about predicting when something ridiculous is wrong with me, and I that I may need more surgery. Or, that I’m randomly about to become the weirdest case of “sick” or “falling apart” in the history of some doctor’s caseload.

When Collin was a baby, I had to have my tonsils out in an emergency surgery, for example, after having an abscess on them drained in the emergency room, because it had become so swollen it was compromising my airway. By the morning, it had re-filled with so much fluid, that I had to be wheeled back to surgery within an hour of my follow-up check because my entire airway was blocked. When it comes to finding ways to be messed up, I don’t screw around; I go hard.

Since I started this ever-so-epic journey of Chiari, another thing I was right about:

*Insert Digression*

Dear Doctor-First-Neurologist-Who-Told-Me-I-Was-Fine,

 I wasn’t.

Sincerely,

Patient Who Told You So

 *End Digression*

Anyway, since I got sick, even before I knew it, I have also been complaining about very specific neck pain. I can point at two spots, one worse than the other, right down to the centimeter, that bother me. And, as it turns out, I have been right all along about those things too.

This is how these complaints have traditionally been received….

“Rachel, Chiari comes with neck pain. It’ll feel better once you are decompressed,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons and fully believing that it’s true.

But my neck pain didn’t, and hasn’t, improved. And, post-operatively:

“Rachel, you’ve had Chiari surgery. Your neck muscles were opened like a curtain. Twice. You’ll have some post-operative pain for a while. Give it some time. Plus, your neck will always be a bit weak,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons, but at the one-year point of surgery #2, a little suspicious. Mostly because she can’t even wash her hair without crying.

So, I talked to my pain management doctor. He’s the very bestest doctor in the whole world, so I really trust him, and I know that he listens to me. Hell, even if he’s not, he’s the best faker in the world. He’s really good at making me feel like he’s listening. I imagine that in his outside life, he’s used up all his listening skills on his exhausting patients, like the ones I can hear through the walls while I wait, begging for Oxycodone because they have indescribable pain in a different spot than last time, and his wife wants to murder him because he can’t remember to bring home the damn bagels that she just called him about on the ride home.

Anyway, I’m not on any pain medication right now, so my pain is, not currently what you’d callmanaged.” It’s out there in the open, screaming to be heard. It’s basically having its own little pain pride parade every day. But, he’s still trying like hell to help. He’s concerned. I’m concerned. Bryon’s concerned. I think the mailman, who is forced to witness my walk of (non)-shame to the box in my pajamas every day, is also concerned.

Don’t get me wrong, I didn’t expect no pain for the rest of my life (not that I didn’t hope for that scenario – don’t all Chiari patients long to be a success story that does something amazing like running a marathon again, or being in a Wheaties commercial?); but, I did hope to be able to sit upright for larger portions of the day.

I explained for the billionth time, to him, the few spots on my neck that were agonizing, and stressed that I’ve said this at every appointment to every doctor. And, I told him that there are other things that are freaking me the fuck out, now too. My arms are going to sleep, sometimes for up to 18-24 hours at a time. I get dizzy when I look up, sometimes to the point of falling over. I can’t see if I look to the left or right too long. My legs are week, especially my left one. My left hip hurts so much sometimes that my Tiny Tim impression is far too true-to-life.

He’s known that my neck has hurt all along, and he’s done plenty to try to ameliorate it, from physical therapy, to suggesting a medical pain implant device, as a last resort. But he did a full exam and was pretty shocked at the extent of the new weakness. So, he sent me for a battery of tests and images that made me feel like someone was finally taking it a little more seriously than, “this comes with Chiari.”

The most “fun” test was the EMG, because everyone loves to be stabbed with tiny needles to see how their nerves are functioning. Spoiler alert: my nerves seem to be functioning okay. But, this is good news, because we were temporarily terrified of a potential MS diagnosis. Phew.

My surgeon likes to say:

“your spine looks great! I wish I had this spine!”

This assessment has perpetually annoyed the fuck out of me. No matter what specific question I had for him, his answer was always that my spine was great. Great. Fantastic. Great. No issues. Great.

Hmm…

That seems so weird for someone who has had neck issues since day one. It was, in fact, the first thing that sent me to the doctor, aside from the headache. My neck pain spread so far down my shoulder and neck that my whole arm became useless. I couldn’t lift my work bag. Thanks to fantastic military medicine, I was prescribed Motrin, and I was miraculously healed.

My surgeon is a fantastic surgeon, but he has a reputation for not really “cooking stats,” but for keeping his stats the way he wants them. This means that if you go see him for Problem A, he won’t “let” problem B pop up on your case, because he doesn’t want to mess up his high success rate on his surgical stats. So, no matter what you come up with on your imaging, he’ll tell you that you look great.

I’m a Chiari patient. He fixed my Chiari problem. I’m not a spinal patient. Not even if that Chiari caused the spinal damage (which it obviously did). Chiari fixed. Job done.

This can be a problem in sick-person world, because finding a spinal surgeon to take on someone else’s work is, well, challenging. Duh, they don’t want their hands dirty with someone else’s trash stats either! Meanwhile, patients suffer.

And, in case you hadn’t guessed, you don’t want the Jiffy Lube of spinal surgeons messing around in there, especially at the C-spine level. Your C-Spine is the level between your neck and shoulders. A tiny slip and you are paralyzed from there below, including breathing. Hooray! Jiffy Lube surgeon means the potential for diapers and a ventilator forever! At least I won’t be able to say my neck hurts, right? Not funny? No sad clown?

So, drumroll….

I get all of my imaging results back and what do you know? My C-Spine is rather fucked up. In fact, I’d like to take a moment to congratulate C3 and C4 right now for being the only two vertebrae, currently, holding down the fort. Great job, guys. A round of applause.

C-1, which is the vertebrae that my first surgeon shaved to make room for my brain, whelp, that one is deteriorating pretty badly. C5-7 are also degenerating, and the discs at most of these joints are bulging, especially badly at C7.

The insane part is that these are the exact spots that I point to, every time for the doctor. Every. Fucking. God. Damn. Time. And, I always say, “This spot is the worst,” at C1. Always. At C1, I always demonstrate how if I hold my head a little differently, I can relieve some of the pressure, but it doesn’t help for long. Hmmm, wonder why that is! Because that’s where my amazing (I’ve decided to compliment it from now on, in hopes that it will be nicer to me) brain used to be sitting!

Grrrrr.

Did you know, that Chiari is a progressive condition? That the longer your brain, which is fucking heavy, sits outside your skull, and rests on your SPINE, where it’s not supposed to sit, it does damage? It’s a damage domino. I was 37 when I was “fixed” the first time, which failed; 38 when I was fixed the second time. So, I was 38 when the weight of my brain finally got lifted off my spine. For 38 years the weight of my brain rested on my spine. No shit there’s a bunch of damage there.

So, what to do?

Well, that’s the million-dollar question. I have no idea. I’m scared right now. I have a bunch of information that I have no way to fully figure out, at the moment. I’m relatively certain my current surgeon will say what he always says, but who knows? With a report in hand that says my spine isn’t great, he may not be able to say that. Of course, doctors like him like to say things like, “this kind of thing is normal,” especially for women my age. Since this damage is progressive from reports before, I know it’s most certainly not normal, my man.

Um no.

Most women my age can function without a C-Collar. Just sayin’, doc. Not going to get away with that one. But, I don’t want to rush into spinal surgery, either. Fusion is the most common spinal surgery, but at the C-level it’s a big damn deal.

And, it’s relatively rare at C-1. There are significant risks of fusion at C-1, because C-1 holds your head ON your neck, and makes it turn. It means that there’s an almost guaranteed reduction in mobility and range of motion, usually up to, or at least, 50%. Hooray! Because of this, it’s usually only done when required; for example, when your neck is broken, or you are literally decapitated internally. It’s also done when, wait for it, your neck bone (yeah, like mine) deteriorates. Booyah!

Ding! Ding! Ding! What does she win!? The high probability that she’ll soon be filled with neck hardware, new scars, another shaved head, and the increased frequency of surprising her from both behind and all sides. 

There’s a pain implant device, but is that just a Band-Aid until my neck gets so bad that I can’t move at all? Then what? What if there’s nothing left to fuse at that point? Do I go back on pain meds and hope for the best? Oy!

Oh, and by the way, my hip hurt because I had broken it, and never realized it. Yeah. For real. I broke my damn hip! Who the hell does that! Apparently me.

Okay, I’m being dramatic.

But, it’s mostly true. Apparently, I broke a big ol’ chip of bone off my hip and there it is on the X-ray, having had its maiden voyage, and then rejoined its pals on the old SS. Hip Bone! I wonder where that chip was trying to get to?

Now, I don’t feel like such a damn baby for whining about it. The report says that I may have also a labral tear, but meh. I think the broken hip sounds more impressive. I think I’ll adopt a permanent limp from now on.

Bryon says he thinks I have osteoporosis because since he’s known me I’ve broken too many bones, and my spine is falling apart way too quickly for anyone’s taste. And, he’s all braggy about having never broken any bones. I think that instead of worrying about me having osteoporosis, he should worry about which of his bones I’m planning to break for making fun of my pitiful weakness. Except I’d probably break something trying to do that, so that’s a terrible idea! And who gets to almost forty without breaking a single bone? Didn’t he play as a child? Come on! I was a dork, and even I broke two bones as a kid! Lame ones, but still.

We have about a jillion doctors’ appointments coming up to talk over options and what to do in the next few weeks, and I’m hoping for more answers, but I know this process. It’ll leave us with more questions and more answers than before. I know we won’t know anything more. I know that it will be months before I know what’s happening. I have names and numbers of more surgeons for second and third opinions, if my surgeon decides to be a butthead; but they are all, of course, out of network. Ugh. But, it’s the beginning of the process.

So, away we go again! Wish us luck.

I leave you with the image of this insanity, if only because of how happy my boy and I look. Bryon noticed that every time he tickled Collin, I laughed too. Collin’s laugh always gets me. Every. Single. Time.

 

I may not be able to sit up for more than a few minutes at a time, or get dressed very often, or comb my hair, or put on my makeup, but I can let my boy lay next to me and listen to him laugh.

So, ignore the up-the-nose-shot, and how ugly I look, and enjoy mommy-son joy.

Popping Pills

This is my pill case.

There are many like it, but this one is mine.

Just kidding. But really, this are the pills that I have to take, every day to survive. If I don’t take these pills, I will likely have a seizure, or feel very, very badly, and wish I were dead. As you can see, there are little boxes for morning, noon, evening, and bedtime. Phew, because I can’t remember if I took my pills, sometimes (all the time) from one part of the day, till the next. This helps take the question out of it. Or, you know, the death, from taking them two or three extra times.

Bryon fills it up for me, every Sunday night, so, he could kill me if he wanted to, because I don’t even remember what the full dosages are, anymore, for most of them. Well, that’s not true, I do, but I’d get confused trying to fill it up. It’s too much math for me these days! Once all those little doors are all opened up, I’d feel like a third string mathlete who got called to “the show” because everyone else’s pocket-protectors were destroyed in a freak calculator fire.

Anyway, I thought I’d take a minute to explain what it’s like to be on so many drugs, foreveh. All the pills in this case are non-narcotic, and are non-addictive. There is nothing in here that causes anything that, say, means I cannot drive, or am impaired in any way. But, it still means that I have to take a bunch of stuff. They all help, a lot, but they don’t make me better. I’m an open book about my condition, and what I use, and do, to treat it, so why not give you a glimpse into my meds, right?

Topamax

A controversial drug in the Chiari world. Lots of neurologists start headache patients with Topamax, or its newer patented drug, Trokendi, which is just an XR formulation. The generic is called Topiramate (or Topiramate XR, in the case of Trokendi). It’s an anti-seizure medication that has shown to be very effective at reducing migraines, as migraines originate, in many cases, in the same part of the brain, as seizure activity. Lots of people in the Chiari community think that it’s akin to poison because it has a lot of negative side effects, especially during the adjustment period, such as confusion and making your food taste bad. The confusion goes away, but making soda taste bad, not so much. I think we could all live with less soda though.

I know a woman who claims that she failed a fourth grade math test; drove her car off a bridge; and that her red blood cell count was so elevated, her doctor thought she might have cancer, but didn’t. Since a grown woman doesn’t have call to take a fourth grade math test, and (I think??) it’s a white blood cell count that indicates cause for alarm for cancer (which she didn’t have, anyway), and the bridge thing is the questionable icing on a cake made of lies, I feel like she might be exaggerating her response to the med, but who am I to say? Either way, lots of Chiari people call it Topashit, Dopashit, or Dopamax. Really, I just think it boils down to the fact that they don’t want to believe that any of their headaches could be related to anything else, and don’t want to trust a neurologist to treat them, if it’s not to refer them to a surgeon. Chiari patients are inherently mistrustful, and with good reason.

Regardless, I’ve taken Topamax, since I was a teenager, in varying amounts, from 50 mg a day, up to 800 mg a day (an insane amount, prescribed by a terrible doctor), I’m on 300 mg a day now, and that seems to be a good, stable amount. I have my liver and kidney levels checked regularly, and I’ve had no damage, which is another side effect (stones especially). I’ve not failed any math tests, driven off any bridges, or had any fake-cancer scares, yet. But, Collin’s in fourth grade now, so if I have to take one of his tests, I’ll let you know…but wait, he’s in fifth grade math. Shit, I won’t ever know!

Gabapentin (Neurotinin)

Gabapentin is for nerve damage. I didn’t realize how badly my scalp nerves were damaged, until I was prescribed Gabapentin. I just thought that it was normal to not be able to brush my hair anymore, or to feel like I was constantly being stung by thousands of invisible, tiny bees, at all times. That’s, apparently, not normal. Who knew? Gabapentin took several weeks to get used to as well, because it works on the brain, and it took several weeks to work up to an appropriate, stable dose, but I love it.

It makes you ungodly tired, at first. Like, I could barely move my face off of the pillow, for the first few weeks, but I’m perfectly normal now, and I don’t know how I survived without it. Most people claim that it makes you gain weight, usually around 30-60 lbs., but I’ve not had that issue at all. I’ve found that being able to move my head without my hair follicles sending stabbing icepick pain through the rest of my scalp makes it easier to exercise, not more difficult. I was hesitant when I read a lot of people claiming this wait gain, so I read through the literature, and saw that the weight gain incidence was something like 2 out of 336 patients (vs 0 given placebo). So, when I see dozens and dozens, no hundreds of people on groups, posting that they’ve gained 50 lbs., or more, thanks to Gabapentin I think there might be something else going on. All I know, is no more tinglies!

Cymbalta

Did you know that depression is pretty common in the chronically ill and those with severe, chronic pain? If you read this blog, I bet you did. I take Cymbalta for my ongoing depression. I tried several drugs before I got it right with Cymbalta. It’s made from fluffy kitties, clouds and unicorns. It’s amazing. It gives me the energy that I lack when I’m in a low, and it keeps me level when I don’t want to be. It doesn’t cure depression, but it makes it more bearable, and makes it easier to help me to help myself. But, it gives me dry mouth. Why do all anti-depressants give you dry mouth? Seriously? It’s the worst. And not just dry, but like you’ve been licking your living room rug all day, and then sucking on a back of pennies for refreshment.

I have zero shame for taking Cymbalta, and if anyone ever wants to talk to me about other drugs I’ve tried and why I didn’t like them, I am happy to discuss. I know someone who claimed to have had a stroke after one pill of Cymbalta. Thankfully, she survived; and, considering her harrowing battle to survive driving off a bridge, failing a fourth grade math test, and a blood test that was nothing, she’s lucky to be alive. In other words, I think she did not have a stroke. I’m pretty sure she’s just anti-all-meds, which is always abundantly clear, as she recommends wrapping your feet in hootchie-mama oil and breathing in the relaxing scent of hippie-sweat, available from your local oil dealer. Or her, of course.

Stool Softeners

Is there much more to say about stool softeners? I take opiates. Poop is hard when you take opiates. Stool softeners make poop softer. Must you know everything?

Synthroid

I have a hypoactive thyroid. So, I take 50 mcg of Synthroid a day. Once, when the prescription ran out, I was too lazy to get it refilled on time, so I thought to myself, “I wonder what would happen, if I just stopped taking it. It’s such a small pill, what can it really do?” Know what happens? You develop a giant goiter! That’s what! They thought I had thyroid cancer, which was a terrifying 36-hours. Thankfully, when I got back on my meds, it shrunk back down to normal, within a few weeks. So, note to others: don’t stop taking your thyroid meds. I only ever really called to refill it, not because of the goiter, which I barely noticed, but because my hair kept falling out in handfuls, and I was really, really tired. The doctor though, spotted the goiter from across the room. Apparently, my family and I are not that observant of large lumps on my neck.

Clonidine

Clonidine is, technically, a heart medication; but, it lowers your blood pressure quite nicely, and knocks you the fuck out. It’s a great drug for combatting withdrawal. You can take quite a bit of it, especially when you are in the throes of it. Since I have to do withdrawal, yet again (ugh, I know), it’s my ever-faithful friend. I take it at night, usually, to make it through the night, because it’s the longest time I go, usually, between doses of Oxy. Me and Clonidine are well acquainted. He lets me call him Clonnie. And he calls me, His Bitch.

Benadryl

I am allergic to everything. For real. I eat a cupcake from the bakery at Von’s and I’m fine. I eat two, and I get a rash. Enter: Benadryl. I get rashes from just about everything these days: candy, cookies, cake, essentially everything delicious. Aside from the allergies, Benadryl can be your best friend when you need extra sleep from withdrawal, and it helps with some of the symptoms, like the post-nasal drip, sneezing, and the red, watery, running eyes.

Drugs That Aren’t in the Daily Box

Oxy

Obviously. I can’t get rid of that damn med. It’s like a bad re-run, always on. But, it’s back in the rotation from the hideous, month-long headache from the rhizotomy. Back in the withdrawal saddle again. But, Dr. W, my pain management doctor, who rocks the house, has a new idea for me, that is super-scary, but sounds amazing too. He wants to do a spinal cord stimulator. More on that later, but eek!

Muscle Relaxers

I am down to taking these, mostly, just at night. I take Robaxin, which is pretty strong, but they work really well. They make you sleepy, sleepy, sleepy. I have a strong dose, obviously, so I’m always careful when I take them, such as not before driving, even though I’ve been on them forever, and could probably handle it. There’s no room for probably with safety, right!

Various Migraine Abortives

I have several Triptan medications, which are the go-to for migraines. I also keep Zofran at home, which is a prescription anti-nausea medication. I am lucky enough to have dissolvable tablets, that you don’t have to swallow with water, so you don’t barf them back up, during a migraine, or Chiari episode. I also have Firocet for pressure headaches. I also take Advil when it’s really, really bad, because the anti-inflammatory helps a lot, but it irritates my precious, and apparently, delicate tummy.

Being sick in a forever way, means you are tied to some forever meds. It’s not a glorious existence, and it means people are forever looking at your pill case like “I’d never do that,” or “I bet if you just rubbed some coconut oil on it, you’d feel better,” you know, because obviously, coconut oil cures and fixes everything. But, until you get really, really sick, you don’t know shit. All you know is that you don’t really know what you’d do. You don’t know what it feels like to live in fear of the headache that will, finally kill you, in a stroke or an aneurism. You don’t know what it means to just hope for maintenance, not better, worse, or death. You don’t know what it means to just want to survive, at status quo. You don’t know what it means to just want to survive, and hope, that one day, that means thrive.

So, for every one person who says, “I’d never…” there should be at least five more that say, “that’s amazing….” But, there aren’t. There should be, but there aren’t. I know this because I keep my pill case in the living room, because that’s where I spend the most time. I’d forget to take my mid-afternoon pills, if I left it in the bedroom. So, it stays in the living room, where I write, read, and draw, and where I watch TV at night, with my husband. It’s tucked away in a corner, where no one really sees it. But, if it’s time for a med, a guest might take note of it. I see the judgement in their eyes, and sense the “ugh” in their faces when they see how many pills I have to take, the “I’d never do that,” in their exchanged glances. You probably would, my friends, you probably would. Don’t think for a moment that each pill hasn’t taken a small piece of my soul, of my dignity, of hope, because it has. But, I have had to learn to reclaim it, and be proud of living through it, and surviving.

 

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.

Last Withdrawal?

My last surgery was in June. Yeah, we all basically know that. Because of how sick we didn’t know I actually was, I was on a lot of painkillers before my operation. And, because my surgeon, who is both amazing and sadistic, wanted me off all pain control pre-op, I had to go through withdrawal. Don’t worry, I won’t pull out my trusty soap box to proclaim the differences between addiction and dependency, yet again. However, learn them, know them; and, don’t be a butt-head.

For the surgery I just had, the one that made me bionic woman with a titanium plate in my head, my surgeon is usually pretty conservative with the post-op pain control. He generally sends his patients home with 90 Vicodin and a pat on the back. For me, a patient that went in having just previously been on Fentanyl, being sent home on only Vicodin would be the equivalent giving me a bag of M&Ms, and being told to think happy thoughts.

If you don’t know what Fentanyl is, it’s the drug that the media loves to talk about because it’s killing junkies left and right, especially in cow towns. It’s about 100-times stronger than morphine, and it’s given to pain patients and very, very sick people who are already opiate tolerant. If you take it without being opiate tolerant, it can kill you. It’s not designed to be cooked down and injected, hence the deaths. Imagine that! I wore my pain control patches on my arm, as prescribed, so I never died. Funny that, using drugs as prescribed.

Alas, because of the Fentanyl, and the fact that I’d only just gotten off morphine and oxycodone, my tolerance was too high to send me home on just Vicodin. So, my post-op meds were very high too; consequently, coming off has been a long, slow process as well. I have been taking my sweet-ass time doing it. Not because I want to, but because withdrawal sucks, and it’s uncomfortable to go quickly. If you cut a dose every couple of weeks, you feel nothing. If you cut a dose every other day, you feel like you got hit by a freight train.

I’m down to my last drug, oxycodone. I hate it. I’ve been on it the longest. And, I have been refusing to let it go, refusing to come down a dose for a while; not long, just an extra week or so. Then, it occurred to me what I was refusing to do. I was refusing to admit that I was afraid to give it up, not that I was afraid to withdraw. I wasn’t afraid of the actual withdrawal; that’s ridiculous. It just took me a while to realize what I was afraid of. 

I feel roughly okay right now. I’m not great, but most days, I’m tolerable. I have some days that border on good, or even great, even normal. I have some bad days, of course; but, most days are pretty decent. I’m afraid to upset the apple cart. What if changing this last thing is the thing that wrecks me? What if it sends me spiraling backward? And, even though I didn’t want to admit it, a small part of me was afraid that taking it away wouldn’t change anything at all, and I would still be normal, even good. What would it mean to be better? I don’t know how to be better anymore? Help!

When you spend as long as I have, as sick as I’ve been, you become locked in a constant state of fear. You are waiting, constantly, for the next time you’ll be thrown back into bed for a week, maybe more. You’re afraid to make plans, make commitments, even to your son and husband, for fear of cancelling. It’s why depression can set in, because it’s hard to move forward, knowing that your life is irrecoverably changed. Most days, I can stuff that down and charge forward, but some days, it gets the better of me. I was afraid that taking it away would be the thing that made me sick again. It was irrational and stupid.

I was holding onto the oxycodone as a life-ring, which is a dangerous game. It’s especially dangerous for someone like me who will need to continue to use this medication in the future as a pain control measure for sporadic, but not daily, use. I have to have a healthy relationship with medication. As soon as I realized it, it had to go. Now. Not tomorrow, now. My therapist thinks I’m being too hard on myself, but I’m overly cautious when it comes to these things, I guess! It feels weird to admit this aloud, but it's an honest look at chronic illness, right?

So, I set a goal of thirty days, which is coo-coo banana-pants insane. My doctor likes me to take at least four days per step down in dosage, and each step down is very, very small. This protects my body from the worst symptoms of withdrawal. My body tends not to start to notice a change until day two or three, then I stabilize at day four or five, and then I can drop a dose again. Over countless cycles and changes in meds, we’ve learned that I do best when we change doses at about every 7-10 days, rather than 4-5 days.

Mathematically, it’s impossible for me to make my goal, by reducing every 4 days. It’s also impossible, if I reduce every 3 days. It’s also impossible every 2. My goal is to show up to my appointment on January 2nd, down to almost nothing, or nothing at all. These goals are pretty rough on my body, because in order to accomplish them, I have to move at a rate of, at least, 2-3 days per dose drop. This doesn’t give my body a chance to stabilize, and I’m in heavy withdrawal, constantly.

In case you’ve ever wondered: body aches that feel like the worst flu you’ve ever had, runny nose, exhaustion, anxiety, moodiness, sweating, shakes, twitching, nausea, lack of appetite, cramps EVERYWHERE, heartburn. I started about ten days ago, and I’ve already lost five pounds. Best and worst diet in the world!

Last night, right before Bryon carried me to bed, AFTER I fell asleep whimpering. He got me to eat a handful of buttered noodles, but halfway through I tore my clothes off, right in the middle of the living because I was both, burning up, and feeling like the fabric of my clothes was tearing at my skin. Then, I put them back on because I was cold. I finally fell asleep like this, huddled in a ball to stop the cramping in my muscles. I am so sleepy because a lot of the meds that help with the symptoms of withdrawal make you really groggy: muscle relaxers (cramping), Clonidine (thank god for Clonidine - but I challenge anyone to stay awake on two of those - for the anxiety) Benedryl (for the nasal congestion and overall ick), Zofran (for the barfing), Zantac (for the excess stomach acid and heartburn), Immodium (if you don't know what this is for, I feel badly for you because you've had some embarrassing situations).

Last night, right before Bryon carried me to bed, AFTER I fell asleep whimpering. He got me to eat a handful of buttered noodles, but halfway through I tore my clothes off, right in the middle of the living because I was both, burning up, and feeling like the fabric of my clothes was tearing at my skin. Then, I put them back on because I was cold. I finally fell asleep like this, huddled in a ball to stop the cramping in my muscles. I am so sleepy because a lot of the meds that help with the symptoms of withdrawal make you really groggy: muscle relaxers (cramping), Clonidine (thank god for Clonidine - but I challenge anyone to stay awake on two of those - for the anxiety) Benedryl (for the nasal congestion and overall ick), Zofran (for the barfing), Zantac (for the excess stomach acid and heartburn), Immodium (if you don't know what this is for, I feel badly for you because you've had some embarrassing situations).

Still, if you want to see me do something? Tell me I can’t. I’ll let you know in twelve days how I did. I can promise you that I’ll have made it. As much as I hope this is the last time that I ever have to go through withdrawal, I am sure that with my stupid brain and skull, it is likely that it won’t be.

You Cannot Have My Soul - I Made Pillows

I have lots to say about Comic Con, and about all kinds of geeky happenings of late. But first, I want to talk about these pillows. Boring, I know. Bear with me. I have a point. I always do, you know.

I made all of these throw pillows in the last 18 hours. I have been a throw pillow machine. Why? It’s the only thing in my life that I have any control over. And even that, this afternoon, has failed. We ran out of stuffing, leaving my last pillow unfinished. Fuck.

Last night, it occurred to me, bleary-eyed, as I was determined to finish one of these goddamned things, that being sick sucks your soul. It takes away all the bits and pieces of you, until there’s nothing left, and you grab onto random things, and fight for them, for tangible, random things to hold into the air and scream “you can’t have this too!” about. Yesterday, it was pillows.

Two blue Hawaiian pillows, a green Hawaiian pillow and a patchwork pillow. The patchwork one is made of a pair of shorts that Bryon used to have that he wore until he, literally, wore a hole in the seat. They were special to me because he bought them while we were dating. That means he wore those shorts for close to, what, over 11 years now! I had to keep them, in some way. Don't say I'm not sentimental.

Two blue Hawaiian pillows, a green Hawaiian pillow and a patchwork pillow. The patchwork one is made of a pair of shorts that Bryon used to have that he wore until he, literally, wore a hole in the seat. They were special to me because he bought them while we were dating. That means he wore those shorts for close to, what, over 11 years now! I had to keep them, in some way. Don't say I'm not sentimental.

Now that I’m all in the “recovery” phase of the second surgery, and things are looking up, fate decided that it wasn’t okay to leave me the fuck alone. I’ve been feeling like shit for months, specifically, in my bladder. I’ve been having an increasing amount of difficulty emptying my bladder. I’ve had several UTIs because of it, and now, it looks like I have either kidney, or bladder stones. The doctor is very concerned, and frankly, I am too. I can’t tell you how much it hurts. Considering that I’m still heavily drugged from surgery, and I’m doubled over sometimes, I can tell you that it’s wildly unpleasant.  

I’m being scrunched into a urologist’s schedule tomorrow, and I’m terrified. I’m terrified of the same things I was terrified of when I started my whole Chiari journey before. I’m scared of finding out that I’ve got run-of-the-mill stones; I’m terrified I’ve got something worse; but mostly, I’m terrified I’m in excruciating pain and there’s no immediately detectable reason.

For as “healthy,” and as good as I supposedly look right now, remember that I’m healthy comparable to where I was six, or eighteen months ago. I still need twelve to fifteen hours of sleep a night. I still nap nearly every day. I can’t work. I can’t pick up anything heavier than my cat. I can’t concentrate long enough to read anything more difficult than a young adult novel. I can’t exercise more than twenty minutes at a time. I’m making peace with how slow that recovery is, and what the cap is on how far it might ever go.

My "healthy" picture (there, some Comic Con thrown in). Even this is drugged up with some anti-spasm meds for my bladder, so I could manage to be here. It sucked. I was still super uncomfortable anyway, and only managed this day and the next day before they wore off, and I had to go home. Still, we had a great time!

My "healthy" picture (there, some Comic Con thrown in). Even this is drugged up with some anti-spasm meds for my bladder, so I could manage to be here. It sucked. I was still super uncomfortable anyway, and only managed this day and the next day before they wore off, and I had to go home. Still, we had a great time!

So, to have another blow, another thing added to the pile was too much to bear yesterday. Yeah, I know that something like this is something that anyone gets. I get that. But, the reason that I probably got it? A drug that I have been on since I was about 20, for migraine prevention, in varying doses, ranging from high, to super high, can cause kidney (or bladder) stones. So, do I have a lifetime of side-effects from being sick, to expect? I mean, that’s what happens, isn’t it? First, you get sick, then you get sick from being sick, right?

The thing is, when I spent about three hours raging and crying, it wasn’t for me. I didn’t shed a single tear for pity-party me. I was mad at how this fucking thing affects everyone and everything around me. It’s more time off for Bryon. More doctor’s appointments. More procedures. More anesthesia. More time that Collin watches me suffer. More appointments. More specialists. More time that we have to tell family that “Rachel is too sick to come to that family thing,” and hope that they don’t judge Bryon for being married to a piece of shit drama-queen.

So, I made pillows. Collin and I had picked out some fabric a few weeks ago because he’d been fixating on sewing. The thing about his autism is he fixates, sometimes for very short periods of time, and goes bananas for random things. A few weeks ago, it was sewing; so, we took him to JoAnn’s and let him pick out fabric for various projects, which he promptly dropped. I’d planned on doing pillows with this particular fabric, for our bedroom; but life, and his other, newer fixations, got in the way.

After not only urgent care, but an ER visit and a visit to my family doctor, my bladder really got bad yesterday. I don’t know what possessed me to feel like making the pillows would make me feel better; but, I was not going to go to bed until I finished a few of them. I insisted that, while being sick was going to take my job; my pride; my hair; and now my ability to fucking pee; I wasn’t going to let it take away my ability to make this pillow, right now. And yes, I knew, even then, how stupid it was.

So, I stood there, because it hurt to sit, and I made pillows. I made two last night, and two today. I made another one too, but I ran out of stuffing. It was like a mission. I couldn’t stop until I was done. I was in agony half the time because my bladder hurt so badly at times that I could barely lean; but, I got them done.

Why Hawaiian? I don't know, really. I think I've always wanted a bed like Blanche Devareaux had in  The Golden Girls.  I think they look pretty okay with the plain bed, anyway.

Why Hawaiian? I don't know, really. I think I've always wanted a bed like Blanche Devareaux had in The Golden Girls. I think they look pretty okay with the plain bed, anyway.

God damn it, I refuse to give up. Take a piece of my skull, take it twice. Put rocks in my bladder. Do what you will to me. Unless you are planning on killing me, I will win, even if it means that I have to waste a day crying, and then making fucking pillows to get my soul back on track.

My Medical Ten Commandments

  • I promise to believe that doctors are inherently good people, who want to do their best for me, and all patients.

This can be hard to do, when they don’t always behave that way. This can be especially hard to do when they give me the side-eye in emergency rooms for mentioning what they deem “questionable” drugs in my history, because CNN told them these drugs are used by naughty people. This too shall pass, when next week it’s not Fentanyl or Oxy that’s questionable, but it’s back to bath salts, or gluten. I miss when it was gluten. Still, I shall decide that they are trying to give me the best care, covering their bases, and attempting to protect me; even though it feels like they are treating me like a crazed lunatic, who only wants just enough of a fix to eat their faces off.

The best smile I could muster before the ER. I'm such a big, fat faker. Obviously. Of course, this is before the hysterical crying set in. I cried, hysterically, for about four hours. I couldn't even stop to talk to the triage nurses, or in the waiting area. I was quite the sight for onlookers. Faker! Faker! Faker! No one should have to endure that scrutiny.

The best smile I could muster before the ER. I'm such a big, fat faker. Obviously. Of course, this is before the hysterical crying set in. I cried, hysterically, for about four hours. I couldn't even stop to talk to the triage nurses, or in the waiting area. I was quite the sight for onlookers. Faker! Faker! Faker! No one should have to endure that scrutiny.

  • I promise not to do Google research for days, before taking a new medicine, seeing a new doctor, or being diagnosed (or after, for that matter).

Even though it’s tempting. I promise to Google only answers to specific questions, and then to ask my doctor for clarification. If my doctor’s advice differs from Google, I promise to defer to the doctor. This also means I promise not to self-diagnose, or therefore, misdiagnose. You know, because I’m not sure where Google went to college; but my doctors hang their degrees on the wall.

  • I promise not to go down the dark hole of Internet support groups.

Oh, how alluring they can be. Everyone agrees with you!

“Do your toes look like this when you get out of a hot shower?
"Red?”
“Omg, me too!” 
“I think you have red-toe-disease! You should badger your doctor for a diagnosis, because you may be dying!”

You are suffering; they are suffering. They are like a warm hug. Of bees. Everyone is co-dependent. They aren’t all this way, of course, but many are. There’s self-diagnosing of co-morbid conditions, self-aggrandizing, gossiping, back-biting, and insults aplenty. For sick people, it can be a toxic environment. Dabble if you must, to gain some “knowledge;” but be wary of the source.

 

  • I promise to take my medications, as directed.

 I’m such a rule-follower that I’ve never had a problem with addiction. Dependency, yes. Addiction, no. The doctor told me: every six hours, as needed. So, why would I take more? My pain management doctor says I’m the easiest patient he has for these issues. This means I’m the easiest patient to wean down. I do EXACTLY what he says. Literally.

On my last withdrawal cycle, I thought I was going to die, it was so bad. When I told him how awful it was, he asked why I didn’t call and tell him, because he could’ve prescribed more medications to make it smoother. I said, “because you’d given me X, Y, and Z, and told me to do X, Y, and Z; you didn’t say that I could also call.” I follow directions. Apparently, I should be slightly less literal.

See side-eye accusations above. The last time I went to the ER, I should’ve told her to call my pain management doctor to ease her suspicions about what she thought was drug abuse and seeking. He probably would’ve laughed her off the phone. Instead, she called UCLA, to verify that I was actually a patient with a brain/skull condition. Apparently, she thought I was a clever addict, who researched the names of top surgeons at UCLA, to trick her. The neurosurgeon resident on call told her that, indeed, I'm a patient, and that Tylenol should help. Fucking Tylenol. Who goes to the ER to get Tylenol? Surprise! It didn't help. 

 

  • I promise not to brow-beat a doctor for care he/she doesn’t think I need.

 I didn’t go to medical school. I know this because I don’t remember it. For verification, I also have my degrees on the wall, and neither say medical stuff. They indicate far more useful degrees, like English Literature. So, while others (people like members of Internet support groups) I know with my condition(s) tend to feel more knowledgeable than doctors, because of their Google research, and demand special MRIs, medications, or tests; I choose to believe my doctors’ educations are enough to qualify them to make decisions about my care.

Crazily enough, so far, I’m alive. I’m also doing okay-ish. Sure, I’m on my second brain surgery. Sure, I feel like crap, sometimes. But, I also think that the stress of worrying about it myself, and KNOWING that my knowledge can only half-match my doctors’, is unfair to me. It’s also unfair to them, to give them both an anxious, and obnoxious patient. Isn’t being sick stressful enough? Why would I add to it? Let the pilot fly the plane.

Unlike some others I know, I refuse to let all days be bad. If I feel good, or tolerable, I will enjoy it. I will soak it up. I will go out. I will love it. I know that my definition of "good," is far below what it used to be, and this day was a slow stroll around a shopping mall; but it counted.

Unlike some others I know, I refuse to let all days be bad. If I feel good, or tolerable, I will enjoy it. I will soak it up. I will go out. I will love it. I know that my definition of "good," is far below what it used to be, and this day was a slow stroll around a shopping mall; but it counted.

  • I promise to shower

I don’t promise to put on makeup, or do my hair. But, I do promise to shower before I see any doctor. Even the emergency room. That’s a big deal, because by the time I’ve made it to the ER, I’m pretty ripe, because I don’t go to the ER unless it’s been days of agony. That means I’ve been in bed, or on the couch, in the same pajamas (and underwear – don’t judge) for several days. So, I promise to shower.

I ask you to do the same. I ask you not to do it in cologne or perfume. Just common courtesy. I’m sure I speak for all your patients, staff, and the general public. Well, maybe I don’t speak for the perfume and cologne manufacturers, that you keep in business.

  • I promise to be honest with you, perhaps too honest

I will answer all your questions. I will answer questions you didn’t ask. I get white coat syndrome; so when you enter the room, I will unknowingly develop diarrhea of the mouth, and also high-blood pressure. You may take this as nervousness and evasiveness, as I tell you my life-story, as it relates to poop; instead, take it as me trying to recall every bowel movement I’ve ever had, because you asked me about how I’ve been pooping “lately.”

  •  I promise to send new patients to you, if you don’t suck

 I’ve recommended everyone I know to certain doctors: strangers, friends, grocery store clerks who didn’t ask. If you are a good doctor, I’ll shout your name from the rooftops. You deserve more patients. Doctors have gone from being the most respected members of our communities, to being questioned constantly, and martyred, thanks to our ability to research and review. A little knowledge is a dangerous thing.

  • However, if you are a bad doctor, I’ll quit your service; and, bad mouth you all over town

It takes a lot for me to violate rule #1; but, if I do, you are fired. I will also tell my friends to avoid you. I’ll tell all the people from rule #8 to avoid you. I left a neurologist, who was very good at a certain procedure, but every time I went to see him, he insulted me. I thought I was being self-conscious, so I took Bryon with me to see if I was being too sensitive. When we left, Bryon said, “you are never going back there again.”

  • I promise not to quit. Or, at the very least, I promise not to decide for sure on the day I really feel like it.

No one but Bryon has ever heard me say that I quit. No one but Bryon has ever heard me say, “Let me die.” But, I promise you, I’ve said it. And, I’ve meant it. The pain is that bad, that intense, and that long-lasting. A migraine doesn’t match it; I get to know that, having had both, at the same time. Nothing I’ve ever felt has. Not typical surgery pain, not childbirth, nothing. When I’m not in the throes of it, it’s easy to say that I won’t quit, that I will fight on. Sometimes, I make Bryon bring Collin in, or have him help me to his room, while he’s asleep, just so I remember why I am supposed to keep fighting. Because otherwise, I truly think I could will myself to close my eyes, and not open them again.

 People say how selfish it is to want to let go, to not want to fight. Those people don’t know what they are talking about. I have a family; I have a son. I can’t leave him, or my husband; but there are days when it’s selfish to ask me to keep suffering too. I’m not sure who the selfish one is, who’s asking me; but it isn’t some power. If it is, it’s an awful one. I feel punished, abused, neglected and alone with that suffering. It’s a terrible feeling to be held by your family, supported and loved, but to wish for death to end it. To wish that when your eyes closed, they wouldn’t open again; that’s a terrible pain.  I wish it on no one, but it’s a very real reality.

One day of suffering, for a lifetime, one might say. But, it’s not that simple. It never is. Of course, all days aren’t that bad; most are tolerable; some are good; some are great. But, it’s incredibly difficult to be sick and in pain, and know that tomorrow, you may wake up on the terrible side of sick again. It’s like an anvil over your head. All I can do is keep promising. Keep trying. Keep remembering that I promise not to quit until tomorrow.

Skeptical Homer approves this post and holds me accountable for all therein. Mostly because he holds no truck for nonsense.

Skeptical Homer approves this post and holds me accountable for all therein. Mostly because he holds no truck for nonsense.

 

Stupid Shit People Say to Sick People - Side Note: Stop It!

There are lots of lists like this floating around on the Internet. Every chronically ill person on the planet has a log of them, in mind. Why not add my list to the pot, of totally asinine things that I've actually heard people say, to me, since I've been diagnosed.

Let's just call this a public service warning: DON'T SAY SHIT LIKE THIS TO SICK PEOPLE. WE DON'T LIKE IT.

Things TO say: I'm so sorry that this has happened to you? What can I do to help? or, I don't totally understand what's going on, or your diagnosis? Please explain.

Yeah, that's about it. If you want to help, ASK HOW. Otherwise, shut the fuck up. Chronic illness is super complicated. One system shuts down another, which shuts down another. It's like dominoes. And, it never, ever stops. So, you don't know shit about what's going in in their bodies. Oh, and then depression sets in, because their life fucking sucks. Chronic illness ruins people. It takes everything away, bit by bit. Sometimes, it gives back, slowly; but it's very slow.

We learn to pull ourselves out of it, and we put on our big-girl panties after a while, but it sucks. It gets easier sometimes, and tougher others. But, you don't know all of that because you are outside, on the periphery, unless you are their immediate family. So, don't add to our difficulty, unless you plan to help, by saying these bullshit sentiments (or offhand comments) that you find below. These suck. They can ruin our day, if we are depressed, or on the edge of it.

LIST OF STUPID SHIT PEOPLE HAVE SAID TO ME

My kid is adorable, right? The headphones he wears for sensory overload work pretty well on-point for the message here: shhhh. I have a pair too. Not for people, but because our neighborhood is REALLY freaking loud. Anyway, shut up. Or, be nicer to not just sick people, but overall. We get that you are  trying  to be nice when you say this stuff; but hey, try harder.

My kid is adorable, right? The headphones he wears for sensory overload work pretty well on-point for the message here: shhhh. I have a pair too. Not for people, but because our neighborhood is REALLY freaking loud. Anyway, shut up. Or, be nicer to not just sick people, but overall. We get that you are trying to be nice when you say this stuff; but hey, try harder.

  • You’ll be all better soon
     
  • I bet you’d (or you’ll feel better) once you stop taking some (or all) of those meds
     
  • Have you tried this shake/diet plan that I sell (or my friend sells)?
     
  • Have you tried essential oils?
     
  • Massages really helped my sciatic problem; I bet you’d really feel better if you tried it. I know a guy!
     
  • If you just ate more organic
     
  • Damn GMOs. Monsanto is everywhere, you know?
     
  • Ugh, vaccines. I wonder....
     
  • You’re not handicapped! Why are parking there! I should report you!  
     
  • Good thing you are having this next procedure then, it will all finally be over soon!
     
  • I bet that this next doctor will fix everything!
     
  • You think you have problems concentrating! Brain damage? Believe me, I know! I have a two-year-old!
     
  • Don’t you ever get tired of being sick?
     
  • I don’t know how you do it! I would probably just kill myself.
     
  • I’m so amazed at you. You are such an inspiration!
     
  • Wow. It’s, like, just amazing how you can, like, even get dressed in the morning.
     
  • Are you sure you need this next surgery? Seems like you're not even really sick? I mean, you seemed fine yesterday.
     
  • I know how you feel; I once had like, this really bad headache too. Have you tried Excedrin Migraine?
     
  • I don't know....in my medical experience, generally, when the brain protrudes out of the skull and crushes the spine, it only causes pain when it is out of the skull at greater than 5 mm. Yours is slightly over 6mm, close to 7mm, so it should only hurt a little bit. Your complaints of extreme pain seem out of line with the measurement I see on the MRI. 
     
  • I’ve never heard of what’s wrong with you, are you sure that’s a thing?
     
  • I think my mom’s sister’s uncle has that. That’s with the toes, right? Wait? No. The arms? No. hold on, let me think. No….I have it! I’m sure of it. I think it’s the head? Yeah, I had this real bad headache once, and they even gave me an injection, and they said I had this thing. It was real bad. I must have it too! I totally get it.
     
  • Memory problems? Tell me about it! I lose my keys all the time! I’d lose my head if wasn’t attached!
     
  • I know it's frustrating that you can't read Tess of d'Ubervilles, but don't you feel lucky that you can still read at all? I mean, lots of people can't read at all.

I have been doing a lot of therapy, to prepare for my next surgery. I have a lot of anxiety to deal with about it. Some of these things, I'm learning, are just that people don't know what to say. Okay. So, then don't say anything. As someone with a lot of new anxiety, I've learned something: shut the fuck up. So, I have been a lot quieter. I am very familiar with foot-in-mouth disease. I suffered from it for 36 of my 37 years. You know what's happened in the last year or so? I've offended far fewer people. If you don't know what to say: listen more, talk less. If you really don't know what to say, but feel you must say something, ASK a question. Sick people love to answer questions about their condition, or how you can help. Just phrase it nicely.

The other thing I've learned is half the things people say are really just to mitigate their own discomfort. Dude, I'm sorry that you are uncomfortable that I'm sick. Get over yourself. If you've got a sick person in your life, and you are uncomfortable, stay away from them. Do them, and yourself a favor, and don't bother them, until you can figure out a way to communicate with them. You are hurting them, more than helping them, if you continue to say this crap. If they aren't calling you, or talking to you, it's because you are continuing to say this nonsense, every time you speak.

Consider this Lesson #1 on how to communicate with sick people. It's still Spring Break (or Brake, as my former students preferred to spell it) out here. Off to go party with the 9 year-old...which means, going to see if we can count some whales, migrating off the coast of this place. Professor Rachel Out :)

Hope we don't get lost. According to season 2 of Wonder Woman, it's in the Bermuda Triangle.

Hope we don't get lost. According to season 2 of Wonder Woman, it's in the Bermuda Triangle.

The Question People Are Afraid to Ask

When I talk about my condition, which is not rare, but rarely known, I get a lot blank stares. When I explain that Chiari Malformation invariably includes invasive brain surgery as the standard treatment, and that it often includes more than one, I get a lot of uncomfortable glances at the ground. I know this look well; it’s the look of: I have questions that I’m too embarrassed to ask. The most common embarrassing question (for them) is: do you have brain damage?

The short answer to this question is: Yes. Before I explain why I do, and what it is, let’s review what someone did to my brain less than a year ago. My brilliant neurosurgeon, and I’m not being snotty, sliced open my head, and cut a large hole in my skull to relieve the pressure off my swelling brain. This allowed the part of my brain that was squishing out of my underdeveloped skull, to slide back inside the skull, where it belongs. To keep things where they belong, he sliced a part of my dura, from a higher spot, and patched the hole in my skull with it, leaving me with a giant soft spot, like a nearly forty-year-old baby.

When people are afraid to ask if I’m brain damaged, it’s the least of my concerns. I’m too busy worrying about my next brain surgery (soon). Or I’m concerned the limp I’ve developed is part of the array of permanent symptoms, or it’s because I’ve been immobile too long. I don’t care about your discomfort around me. I’m not ashamed of my condition because it happened to me; I didn’t do it. In fact, I’m happy to share because it spreads awareness about something horrible that very few people know about.

So yes, I have brain damage. Brain surgery is considered a traumatic brain injury (TBI), the healing time for which is measured in years, not months. And, this leaves behind permanent problems for nearly every TBI patient. For me, my problems include anxiety and panic, reading and writing problems, and memory issues.

Anxiety and panic is not uncommon with TBI. My triggers are sometimes unknown; but for the most part, I am triggered by medical procedures. I get panicked by meeting new doctors. And, if you show me an image of a patient bolted to a table, face down for my procedure, you will see a panic attack.

I have difficulty spelling, both in typing and handwriting, horribly distressing for a former English professor. I leave off the beginnings and ends of words, and I misspell almost everything. I used to curse autocorrect, now I don’t know how I’d live without it. Autocorrect fails have become my life; thankfully I’ve learned to proofread before sending words like: boobs (boots), boobs (books), boobs (boon). Why does my phone think I like boobs?

My memory is severely affected. We moved over six months ago and I don’t know my address. Under any stress, even those that would not stress any “normal” individual, my memory is far worse. For example, if I’m in a new environment, my memory is gone. I carry a notebook with me, with all pertinent information, as I won’t remember any of it, and the more anxious I get, when questioned, the worse it gets.

I recently tried to take an art class. The combination of being excited about the course, plus being in a new store for supplies was a recipe for memory issues. The clerk asked me what class I was taking; I couldn’t remember. Then, she asked me what school I was going to; I couldn’t remember. She asked me who my teacher was; I couldn’t remember, but now I was sweating. She asked me where I lived, because I thought I could just end the conversation by pretending I’d just moved, and that excused my silly delirium; but I couldn’t remember, and now I was shaking.

Finally, I confessed that I was a brain surgery patient; she immediately understood, and I relaxed. That’s my permanent practice now; I carry my notebook, I pull it out and answer questions from it. When clerks look at me like I’m weird, I tell them why I’m referring to a notebook. People are exceptionally understanding when they know someone has jabbed at your brain.

Embarrassment shouldn’t stop you from wanting to know about someone, especially a friend’s condition. You may be able to help them in ways you might not even understand. You might be able to come to the store with me. You might be able to hold my hand at a doctor’s appointment. You might be able to just listen. Ask and you shall receive.

Sunday Snaps: A Week in Chronic Illness, Photo-Style

Crafting and Creating

I drew a pretty cool portrait this week. I'd share, but it all went to hell when I tried to do the hair. And, I'm not just being overly critical of my own work. It really did all go bad. I have some cool ideas for a new drawing, but I need some serious "hair" drawing practice first.

A little known "perk" (and sometimes drawback) to being sick, is that I have no eyebrows. None. Okay, a little bit. See? So, I don't have to pluck (hooray!). But, I do have to draw them in, if I want ANY. Thanks for not working properly, thyroid. I'm not being sarcastic; honestly, do you have to shave your pits? Because I don't, and it's fucking great.

That's not an eyebrow pencil, by the way; that's a drawing pencil. I suppose I could use it to draw in my brows; but, they'd look pretty weird. But, it's a close pic; so, it's a good of a time as any to share this additional bit of additional info about my sickies.

About 15 years ago, a friend of my mother's gave me the world's tackiest holiday wreath (the one above isn't it). Every year, Bryon and I pull it out of the box, hoping something horrible has happened to it. Somehow, it survives every move, despite how fragile it is. Holiday wreaths are expensive; well, the non-hideous ones are. So, I made one this year. The bow could use some work; but, it's not bad for less than $20 in supplies!

Thanksgiving

A few yeas back, I convinced Bryon that matching was the epitome of bonding. He thought it was lame; he was not wrong. However, our son wanted to wear matching shirts to something (I can't even remember what it was, now!); so, I convinced him to bend his personal rules of style (it's hard not to laugh at that - Bryon having style!). Now, we have tons of matching family shirts and PJs. This is our first matching couples thing, though.

Remember that disclaimer at the bottom of the page? This is pretty much an unfiltered look at chronic illness? Sometimes, it ain't pretty to look at. I look awful here, and the angle is not flattering to either one of us. But, this is marriage, and a good one. This is the end of the day on Thanksgiving, curled up on the couch, and too happy to move. Bryon's exhausted from cooking all day, and I'm just happy to snuggle him and watch TV. Orange splotch in the corner? The cat.

Getting Ready for Christmas!

Bryon's a stickler about putting up Christmas decorations; he refuses to put up anything until the day after Thanksgiving. We started with the tree. Gone are the days of putting up all the decorations at once. I used to bustle around the house with him, helping decorate every nook and cranny. I was so exhausted from helping with Thanksgiving (I only did the dishes because I felt great that day!), that I was couch-bound, all day. I didn't even put up a single ornament. It broke my heart a little. But, seeing my boys work together helped it heal.

Playing!

This is my boy's best impersonation of a tourist: baseball cap, pants that are too short (which you can't see in the pic), and a camera threaded through his belt. He's about to go to see some horses with our neighbor, who rides at a nearby stable.

Mommy got some business cards, and I gave Collin the first one, because he's the most important contact I'll ever have. He was so proud and excited that he put it right in his wallet, then promptly put his wallet under the couch; you know, for safe-keeping.

The boy is off school all week. I'm not sure why, but they have the entire week off, so he built the world's largest and inconveniently located fort. The center of the living room, buttressed by the couch is pretty annoying. But, I'm a good sport and let him leave it up for two full days. The cat found it distressing, as he fell through the thing twice, not understanding that the "ceiling" would not hold his weight, as he attempted to walk across.

A Toilet Paper Dress Made Me Cry...No I'm Not PMS'ing

A list of things I showed my husband, on my iPad, that I thought were either interesting, or that I wanted to “do,” yesterday:

  • Snowmen for the front yard, made out of staircase spindles. By the way, Pinterest, you’re a bitch; thanks for always making me falsely believe that I’m fucking, Martha Stewart. Holy crap, a comma makes a big difference in that sentence.
     
  • My credit card bill, along with photos of my friends, and an explanation of why they deserved such large care packages in the hospital. Not to worry, he’s a kind soul too! And it’s not 1952; thus, I’m “allowed” to spend our money, despite him having earned the bulk of it. Look! Modern times, folks!
     
  • An easy homemade wreath constructed of leftover toilet paper rolls, re-purposed tears, and holly berries. Just kidding, but I wonder if that is something I could find, if I looked hard enough.
     
  • That photo-journalism piece that’s pretty much gone viral, about where the Syrian refugees are sleeping. On the “by the way” front on this one, there’s a lot of ire associated with the refugee crisis; of course there is, because people aren’t people, unless we can disagree on things to hate. This whole crisis reminds me of the not-so-distant-past, when we were fighting over whose lives mattered more and it was equally ridiculous. So, I’m reminded of Matt McGorry, who said it best, and you might as well fill in Syrian, or Vets or Homeless, or whoever you are on your pedestal about:
“#BlackLivesMatter doesn’t mean that other lives don’t. Like people who say “Save The Rainforests” aren’t saying “Fuck all the other Types of Forests.”

And then, I showed him this:

   The piece de resistance - I'd add the accents, which I totally know how to place, because I speak French (ooh la, la, aren't you impressed?), but I don't know how to do it on the computer (less impressed now, aren't you?).

 

The piece de resistance - I'd add the accents, which I totally know how to place, because I speak French (ooh la, la, aren't you impressed?), but I don't know how to do it on the computer (less impressed now, aren't you?).

I cried because while I was showing him this, he interrupted me to ask me, for the billionth time, how I was feeling, if I needed anything, if I should try another nap, if I wanted a new ice pack. Whatever insane kind thing it was, I don’t remember (damn him for being so perfect and thoughtful, right?).

I blurted out, “I’m not just sick, I’m still me! Can’t you listen to the me that’s talking right now?

Not a shining moment for this gal. Perfect husband trying to take care of me, meets weird, raging wife, angry about a toilet paper dress. When sickness surrounds your whole existence, when you have to rearrange your living room to accommodate an end table that fits your prescription bottles to be within your “usual” reach, it creeps up on you as absolutely pervasive.

And suddenly, without realizing it, you realize that you can’t recall the last time you’ve had a conversation in which it wasn’t at least the first thing that was brought up, if not the only thing.

A simple “how are you?” becomes “how are you feeling?

As much as I want people to be aware of the things that are making me sick, the illnesses that are bringing me down, not because they are rare, but rarely known, and we need help; I want the people in my life to remember that I am still here. Underneath all the pain meds, sponges, robes and pajamas, I’m still here.

A toilet paper dress is still silly to me. Laugh with me. Show me things that you think Rachel would have laughed at because she still laughs. Notice how that description made me sound dead? Gross, right? I’m not dead!

So, stop that! So, remember that I still cry. I still want to laugh. Please remember this the next time you poke around the life of the sick. We’re not just sick.

We’re the same people we were before; we’re just us with special, super gross sauce that we can’t wipe off. It’s like when you order a burger with no mayo, but don’t want to send it back. No matter how much you try to scrape it off, it’s still there; there’s always a hint of it, but it’s still a burger. The main flavor is still meat, cheese and bun. Treat us like the burger, and stop paying primary attention to the mayo. Believe me, we wish we could send the mayo back too!

Sunday Snaps: A Week In Chronic Illness Photo-Style

Are You Sponge-Worthy?

PicMonkey Collage Sponge.jpg

I know when last I updated regarding the potential for brain surgery, the answer was no-go. But, I keep sprinkling the issue of my impending next one like it's no big deal. Why? Because of my stylin' sponge. It was the one thing my neurosurgeon wanted me to try, as a stopgap, to see if it relieved symptoms. I thought he was giving me a sweet, essentially patting my bottom, and passing me on my way. So, I barely could be convinced to do it. However, it's like a miracle. Plus, it makes me look hawt. The only time I can't wear it, is when I sleep (it doesn't stay on), and then wake up ten seconds later, because it hurts again. This is my sponge-hat-band. Pretty, right? And, this is my apparently my "just before waking in agony face," taken in whimpers.

Why does it work? Apparently, it crams the itty-bitty bit of dura (that sac-like-lining-thing that holds your brain together) back into the skull, where it belongs, through sheer force of pressure, and holds it there. Brain surgery, meet the sponge. Advanced science, meet pressure contact. It boggles the mind when simplicity enters the picture, doesn't it? An ace bandage and a sponge can provide immediate relief. Obviously, a person cannot live like this forever, so I'll be getting a titanium plate, and some hardware. Hooray for a future that includes peeing myself when the neighbor fires up the microwave, right? At least that's what my dad says. 

Have Your Cake and Eat it Too!

During especially bad flares, which this last one was, I may not eat for days, or even weeks. Between nausea from pain, pain meds, or just sheer exhaustion, I can lose a lot of weight all at once (hooray!). But, this kind of starvation exacerbates all my symptoms, of course. So, when I murmur something like, "I'd eat something with frosting," from under a heap of blankets, my husband instantly responds and makes cake. Even better, when you haven't eaten for days, you are allowed to eat 3/4 of a cake, all at once, because you are essentially starving. These calories don't count. Shhhh, don't explain to me why that's not true.

 

Smelly Dog...Smelly Dog...You Know the Rest

Are these terrible photos? Yes. Is she a pretty girl? Yes. Am I biased? Yes. Our gorgeous dog gets what we call...wait for it...zoo vagina. Yep, a stunningly, horrible, but accurate description, for the odor emanating from such a massive beast. You know that musky smell, of hundreds of animals at the zoo? Yeah, that's her. Add in the smell of, you guessed it. Her. Big dog=big smell.

California is dry, which is no secret. So, her skin is dry, and she's licking and scratching nonstop, creating all kinds of oil and nastiness; thus, zoo vagina smell reared its ugly head for us this week. Life doesn't stop when you are sick. Dogs still need baths, as she gracefully reminded us by clearing rooms this week. But, look how pretty she is when she's clean.

P.S. Ignore my husband's clogs and socks. We know he looks ridiculous. He know he looks ridiculous. He's on his old-man starter set. He has plantar fasciitis; those clogs feel good around the house, and I'd rather my man have happy feet than be uncomfortable. I draw your attention to his tolerance of the sponge headband.

Speaking of Life Not Stopping....

I made it to my boy's performance, and I'm glad I did. he got an award for his grade. He was honored as a "Good Citizen." I'm often worried that being surrounded by pain is going to stunt him in some terrible way, but when I see him care so gently for me, for his father, for those around him, I'm lifted by it. His principal pulled us aside, and cried when she spoke of how wonderful my child is, and how grateful she is to have him at her school. She said she has not seen a boy like him in many years, and that she is thankful to know him.

We'd promised our boy that we'd both be at the event (it's so hard for my husband to miss work these days), and that we'd go out to lunch, as a family, after, to celebrate. But, the clapping, the sunshine, all of it, were too much during my flare. I was done in. I could hardly stand up. I made a good show, and pretended to be fine, but I was leaning on my husband, and my son could tell, despite my best efforts at well-person-pantomime. School Holiday Programs, awards, homework, none of it stops because you are sick, not for a day, not for a year (not that I was ever much good at math homework assistance).

I still told him that we could go anywhere he wanted, but he said, "Let's go to In-N-Out, bring it home, put PJ's on, and have a Supernatural marathon." That boy is a miracle.

Good citizen, indeed.