Of Course

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

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

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

 

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

 

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

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

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


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

Ummmmmm. WTF?

Ummmmmm. WTF?

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

 

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

 

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

 

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

 

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

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

 

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

 

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

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

 

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

 

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

 

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

 

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

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

 

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

 

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

Fulkerson Recovery, So Far: By the Numbers

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

My nurses, making sure i get lots of rest.

My nurses, making sure i get lots of rest.

So, in no particular order…


Weeks, to the day, since surgery: 3

 

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

 

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



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

 

Blood clots I’ve managed to accumulate: 2

 

 “Dangerous” blood clots: 0

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Birthdays that I have had during recovery: 1

 

Years on this planet: 41

 

Years I thought I had on this planet: 42

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

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

 

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

 

Days I spent on my last homework assignment: 2

 

Weeks left of the semester: 6

 

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

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

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

 

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

 

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

 

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

 

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

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

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

 

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

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

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

Break a Leg

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

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

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

 

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

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

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

 

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

 

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

 

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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

 

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

 

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

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

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

 

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

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

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

 

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

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

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

 

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

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

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


 

I have learned a few things so far though:

 

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


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


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


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

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

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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.

Voluntary Surgery: A New Frontier

I have been sitting on a fence lately. It’s a nice fence, because I’ve come to the realization that while it straps us to afford it, we have the luxury of being able afford my whining about sitting there, debating about telling the world about it. Cryptic, huh? I know.

It’s like getting on Facebook and asking everyone to keep me in their thoughts and prayers, but then never saying anything else about it. Or worse, it’s like following it up by saying something like, “if you know me, you know what this is about.” Super annoying. Mystery only begets insane theories involving you, the mailman, an incurable disease, perhaps a black-market organ donation scheme, a potentially lethal arrangement with a drug cartel; and obviously, a sex ring involving all your neighbors. 

Rest assured, none of the above are true about my fence-sitting decision to talk or tell. My thing is much more mundane.

I am getting plastic surgery.

Phew.

There it is.

In black and white.

For the world to see.

Oy.

It’s easy for people to say, in generalities, about the concept, that, if there’s something about oneself that they truly hate, and if they can afford it, that they should just go ahead and fix it. It’s also perfectly fine to say, that on concept, it’s not something you’d judge someone for. But, when you take the plunge and decide to do it for real, the concept of how truly vain it is, is no longer intellectual curiosity or conversation. It’s a reality, and you feel, instead of proud of taking care of something that has brought you misery your entire life, a great sense of shame. It’s a conundrum.

So, let’s talk about it a little. Mostly, let’s talk about the whole thing. It’s been an overwhelming process. It’s been more than I bargained for. I wasn’t sure what I was getting into!

 

How should I Look?

Firstly, what do I wear to my consultation(s)? How much effort do I put into my hair and makeup? It’s no secret that people who go into cosmetic surgery for vanity’s sake, not for, say, fixing cleft palates in third world countries, are likely interested in “look.” What if I show up in the “wrong” thing? Will they judge me? Ugh. It’s a lot of pressure! It’s like the first day at Mean Girls High, only I’m Josie Grossie. And, everyone knows you can’t mix universes. It’s like Wonder Woman showing up at Xavier’s School for Gifted Youngsters. Wolverine would be like, “what’cha doin’ here girl?” And, WW would be all, “did you just call me ‘girl?” Then, she’d kick his adamandium ass.

 

What if They Think I Need More “Work?”

What if I show up and tell them that I hate my nose; and, they are like, “no kidding,” but secretly are assessing the rest of me, and wondering why I’m not also asking to get my eyes/boobs/ass/legs/and entire face done? They are the “experts,” after all. However, it’s no secret that they get hooked on their own supply.

For example, my doctor is awesome, but I had to stifle a gasp, and an urge to shout, “ACK! Monster!” when she walked in. She’s amazing, think, “doctor that hugs,” but she also looks like post-Friends Courtney Cox, only even more botched surgeries. She was…terrifying, when I first met her.

Photo Credit: Radar Online  To be fair, I read somewhere that some friends basically sat her down and told her that she was starting to look a little...well, grotesque, and she stopped with all the fillers, and she's looking much better now. Phew for that.

Photo Credit: Radar Online

To be fair, I read somewhere that some friends basically sat her down and told her that she was starting to look a little...well, grotesque, and she stopped with all the fillers, and she's looking much better now. Phew for that.

One might wonder if you could trust a doctor who has such a clearly skewed version of beauty to handle your image. And one would be right. But, they all look like that! Trust me. You are stuck relying on testimonials, reviews, your gut, and how the surgeon made you feel when they explained things. No wonder so many people shy away, once they start the process.

The $$

Dude. This is not cheap. Like, at all. I went into my consultation, that I had to pay for, of course, with an astronomical number in mind, so I’d be prepared for that little room, they shuffle you off into, to talk numbers. In some ways, it’s like buying a car, what with that little room. It was twice the number I had in mind. TWICE! Of course, they do financing, but it feels weird to have committed to paying for my vanity for the next two years. A few hundred dollars a month to not hate myself when I look in the mirror.

I have the luxury of saying that I have been given a rough shake; so, maybe I “deserve” something special, and something that I really, really want. But, that excuse only holds water for so long, especially when it takes money away from my family. I’ve managed to rationalize purchasing myself several things that way, whenever I feel especially low after a bad pain flair. My Anthropolgie cart gets a workout, or I bargain shop for stuff, claiming I saved us money by buying things at rock bottom prices through eBay or resale shops. But, I’d save a lot more by not shopping at all!

Rachel: Bryon, I saved $200 on these boots!
Bryon: How much were they originally?
Rachel: That’s not important.
Bryon: Ummm.
Rachel: (in tiny voice): $600. BUT! These have NEVER been marked down! You don’t understand! How could I pass them up!? I’d have been insane!
Bryon: I understand perfectly.

And, he does, actually. I argue that I put up with his faults too. He never wipes the stove properly; and, he leaves the counter by the sink sopping wet when he does the dishes. Insufferable, if you ask me. Truly.

Is it worth it? I guess I’ll have to let you know.

Body Dysmorphia

I sneaked a peak at the doctor’s notes about me at my pre-op, and aside from the technical terms about my procedure, which are not flattering. Trust me, when your body part’s flaws are broken down into the most technical of terms, there’s nothing complimentary about any of it. Think about rhinoplasty, for example. If you are getting, say, a nose-job, “Excess cartilage: rhinoplasty” sounds grotesque; but, even in non-technical terms: “massive honker shave-down” is, still, less than flattering. “Shrink the Streisand,” maybe?

Then, I got to thinking a bit more, and it occurred to me that it is only (most) men that don’t have at least a smidge of body dysmorphia. Bryon can look in the mirror, and truly not see a thing that he hates about himself. He’s losing his hair, has gained weight since we’ve been married, and doesn’t own a single anti-aging facial product. In fact, he only puts body lotion, or any lotion, on when his skin is so cracked it’s about to bleed. He’s cool with whatever version of himself greets him in the mirror every day. He’s your standard American middle-aged, married male.

Can you imagine how lovely and carefree this existence would be? It would definitely be cheaper, I realize, as I very seriously priced La Mer today. 

Meanwhile, (almost all) women, if asked honestly, will tell you at least five things that they’d change about their appearance. And, if being brutally honest, they’d tell you how much time they’ve spent in the mirror examining which angles hide those imperfections, which Spanx work the best, which makeup tricks work the best; and maybe, imagining what lifts, tucks and snips would give them what nature didn’t.

There are the few men who hate themselves as much as we do, or at least hate parts of themselves. These men are the ones you see at the gym, who are miraculously hairless, and who gaze in the mirror in the weight area a little too long. These are the men who have as many “products,” as you do, and who understand your unwillingness to miss a workout, because they won’t miss one either. Bryon doesn’t understand this logic. He is always saying things like, “you are already thin, it’s okay not to run today.” Silly Bryon.

I digress. As always.

Also, can you tell I love Scrubs? And, I can come up with a scene or quote for basically any situation? I had a few perfect ones that I couldn't find a video or a Gif for; and believe me, I looked. Jordan, in my view, the best character on the show, tells Perry she's going to have her doc "fire up the fat vac," when she finds out she's going to be wearing a bikini;" and, she also thanks her doctor for "these," as she points to her breasts. She's fantastic. No shame in her game. Alas, no glory in finding those clips.

Anyhow! I noticed that one of my notes said: “borderline body dysmorphic female. Risks and benefits were clearly discussed w/PT.” At first, it caught me off guard, but then it occurred to me: yep. That’s about right.

I know we all look in the mirror and hate our nose, eyes, forehead, legs, butt, feet and fingernails. But, I truly HATE certain body parts. Like, I HATE with a passion that burns hotter than the sun. Tears have been shed, including tears in this doctor’s office, which is probably where she got that diagnostic note. I think I was a little overwhelmed with the potential of a magic wand solution, and the ability to finally let that hate out, to a doctor that has it.

Goals

Which brings me to what I hope to accomplish from this surgery. A good surgeon will caution you about what can and cannot be accomplished with plastic surgery. Apparently, the ones who promise that they can fix “anything,” are the bad ones. In my wildest fantasies about life, I can have skinny thighs, a better chin and nose, and bigger boobs, and I also have a massive house that looks at the ocean, we have horses, a carousel, some monkeys…wait, that’s Neverland Ranch. Scratch the last bit.

The idea of the goals of surgery are important, nonetheless. As I was so woefully lectured, I will never be a supermodel. In fact, those were the exact words my doctor said, except she added, “you’ll never be Cindy Crawford,” which I felt was a little bit of salt in the wound and perhaps unnecessary. I get that ship has sailed on my life, thanks. In no way, do I hope to attain beauty that rivals one of the most perfect genetic specimens in the world. Thanks.

So, what do I hope to accomplish. Apparently, I’m supposed to be aware of tempered expectations, before I go to my consultation, and definitely before I go under the knife, fat vac, heat laser, or whatever tool they choose to use on my secret procedure. Maybe, I’ll tell you what I am having done at a later date. Or, I will let you keep guessing. Every time you see me, you can assess me, and think, “finally, she got that chin taken care of,” then, “nope that hideous nose is a bit smaller,” or, “phew, she looks thinner!” You may never figure it out.

Could be a ton of Botox?

 

Could be the Fat Vac?

Suffice it to say, it’s very subtle, and it’s just for me. You’d think the subtlety and minuscule nature would affect the price, but it does not. Like, I feel like if I want only a millimeter shaved off my nose, or an ounce of fat removed, or something like that, the price should be commiserate with services rendered. This is not, however, how the pricing scale works.

This was the FIRST picture in my entire photo stream, on my phone, that even resembled a full body shot. I present you a "before." If I just gave you a "face," you'd think, for sure, I was doing something face. If I gave you a pic of my ass, well...you get the picture.

This was the FIRST picture in my entire photo stream, on my phone, that even resembled a full body shot. I present you a "before." If I just gave you a "face," you'd think, for sure, I was doing something face. If I gave you a pic of my ass, well...you get the picture.

 

How do I Ask the Right Questions?

When you have brain surgery, the list of questions for your surgeon are automatic, mostly because you know that if they mess up, you’ll die, become paralyzed, or become a drooling buffoon. You can automatically come up with dozens, then dozens more that you should’ve asked on the way home. The only question you can think of, while you are in the plastic surgeon’s office, even if you write something down ahead of time, is “what are the risks of me looking like a freak?”

Obviously, my recovery, pain control, infection risks, and financing questions have been clearly explained. In fact, they were so informative, that I barely had room to come up with a reasonable question, to be honest. The only question I’d come up with, that I’d written down was about a money back guarantee, which felt stupid, and made me feel like a Wal-Mart shopper who’d won the lottery and wandered into Cartier for the first time, Nascar t-shirt and all, ready to make their first real purchase. Still, it felt like a reasonable question. You know, like what if it’s really, really messed up? Do they stand behind their work and fix it? They do.

Well, the bottom line is that in about two weeks, I’m going to be a true LA gal, because I’m having plastic surgery. It’s official, I’m a Californian. 

Also, I can't let this post go by without the mention that my precious baby child went with me to my pre-op appointment (not the initial appointment(s). But, he was bewildered at what "those" were. When I explained that they were breasts, he was sufficiently grossed out. He was even more grossed out when I told him he could touch them.

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His assessment is that the second breast from the top felt, "weird." The funny thing was that the office assistant, when she brought us to the "pay room," where the huge implants are stacked, said that kids LOVE touching and playing with those. Apparently, my son's curiosity is not alone.

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.

Super Serious: Why I Didn't Say Goodbye

Bryon says that this is a very serious sounding post...sorry. It made me cry when I read it, and when I wrote it; but it's about my life. He prefers when I'm funny. We can't be funny all the time!

When I was still working, one of my students asked me, right before my first surgery, if I’d written a goodbye letter, “just in case,” for Collin. This woman was a lovely student, except for the fact that she’d just made me cry in front of my class.

I can’t say that I hadn’t thought about it. In fact, I’d thought about it every day since my surgery had been scheduled. I’d sat down and started draft after draft. But, I didn’t end up writing a letter then, and I didn’t write a letter this time. I suppose it’s possible to see this as selfish. What if I’d died? My son wouldn’t have had a tangible goodbye to hold on to. He’d have had no final words, at least not on paper. He’d have had nothing, no physical “thing” to put in his hand.

But, the thing is, he’s nine, and he’s autistic. He collects random objects, and calls them treasures. I don’t get control over what he treasures though. He’s lost, or eschewed countless things that I thought qualified as mementos, and saved trash. He’s cultivated collections of string, bits of gravel, lint, dead bugs, and glitter.

This is Collin's treasure box, where he keeps his MOST prized treasures. Only the best things go in here. You can tell that something is super-duper special if it ends up in here, because the box is so small.

This is Collin's treasure box, where he keeps his MOST prized treasures. Only the best things go in here. You can tell that something is super-duper special if it ends up in here, because the box is so small.

It’s possible that I’m underestimating him on this subject, of course. The only real treasure that he’s kept, in his entire life, has been his monkey. We made Monkey together, when he was about a year old, and like most children, he chose a stuffed animal, at random, to latch onto. So, he does have some sense of sentimentality. But, other than that, like most (autistic) children, his idea of what's treasure, and of what is important, is fleeting, but fierce.  

For example, yesterday, he insisted that we bury a dead butterfly that we found on a walk. He was so devastated when we found its ragged body that he cried the whole way home, cradling it gently in his hand. It was quite ridiculous, frankly. How do you comfort a child about a dead bug that he found in the street? It’s not like he found a dead hobo.

I wanted to be comforting, but also not to encourage these kinds of dramatic interludes. He was predictably Collin though; he got distracted by a box fort in the garage, when he went to find the hand trowel. Like I said, his idea of what’s important is fleeting.

He’s no different than any other child in this way; when he sees something exciting, he’s drawn to it. The only difference is his level of of fixation. And sometimes, his fixations come at the cost of what others might deem, actually important. He might talk only about one subject for weeks on end, for example. And I do mean, only about that subject.

But, to be honest, I also wasn’t capable of writing such a letter. How can a mother say, with finality, that this is the last time that she loves her son? I’m not even good at saying goodnight for the last time, each night. No wonder he pops out of bed ten times, just to get one more kiss.

I could never write that good-bye down. Whatever I said, whatever words I chose, it would never be enough. There aren’t enough treasure words in the language to express how much love he needs from me; or how much he’d need from me after I would be gone. There wasn’t a way to express how much I felt that I would need to give him, enough to last the lifetime that I’d be missing.

In this collection of gathered detritus is a discarded hair tie (gross), beads, random plastic jewels, a jump ring, and other pieces of flotsam, all found on the ground, and all very special.

In this collection of gathered detritus is a discarded hair tie (gross), beads, random plastic jewels, a jump ring, and other pieces of flotsam, all found on the ground, and all very special.

Language is a powerful tool. We have words for everything, but we don’t have words to express the pain, and the frustration of this. There’s the enduring story of how Eskimos have a hundred words for snow (they really only have 50); so, why is there only one word for love? And, why is there no word for this kind of love, and this kind of desperate need to express it? And, it certainly seems like there should be a separate word for the fierce devotion that parents have for their children.

I Googled terminal moms who’d left letters for each year, each birthday, each milestone. But, I couldn’t figure out a way to express my love in a way that was right for him. Collin is different. His milestones will be different. Will he go to Prom? Will he get married? Will his milestone be that he wins a Nobel prize, instead? I dream big for him; and, shouldn’t I? What if I write him a trite letter that tells him to pin a corsage on his date, and to be chivalrous; but, not about how proud I am of him, as he takes the oath of office, either as President, or as an FBI agent, as he’s so keen on becoming lately?

While these women’s stories were touching, they seemed like a Lifetime movie; they were foreign and unreal. Collin isn’t all the way done yet; how can I write to him in the future? All I know about my ten-year-old, fourteen-year-old, or twenty-year-old version of him is that I’m proud of him and that I love him. Letters to that version of him are otherwise blank. His path is unpredictable, just like Collin. One of the reasons I love him so much, and treasure every second of every day with him, is that he surprises me.

My shy boy, who clings to the idea that to go unnoticed is the key to life, came home during the last week of school and announced, as he climbed into my lap for comfort, “I told Alex S. that I like-like her.” He boldly, without comment, and full of bravery, announced his crush to a girl. She ran away screaming, of course, and thus ensued a great game of chase, because, after all, they are nine. He’s full of these kinds of surprises. How do I predict what letters to put in a little lifetime file-box for him?

This puts aside that that I will miss all of those things; and, that he’ll miss me. How could he know, in words that don’t exist, that I love him so fiercely that I’d imagined that the only reason that I was so sick was because I made a deal with the universe, trading all the pain he’d ever face for an infinite amount of pain and suffering for me. Some days, it was the only way to endure my suffering, to imagine that it was so he wouldn’t have any. It made me feel willing to take any amount of pain, with bravery, despite knowing the deal was imaginary. If I had to die, to leave him, the only way for me to be okay with it, was to tell myself that it was for him.

But, how was I going to write goodbye, when I knew that I wasn’t going to be there to explain it to him, to help him navigate how difficult it would be to face it alone? It was a paradox to explain in words. He’d need me to help him be without me. How could I guide him through it?

I didn’t want him to hold a letter, even if he was old enough, or if he knew it was a treasure, because that would mean that he knew it was all I had to say. I didn’t want him to feel alone, when those words weren’t enough. I imagined him holding a letter, and I didn’t want him to read my words, and not have my arms around him, when he’d already faced so many years without them, and had so many left to go.

So, I didn’t write the letter. And, if I have another surgery, I probably won’t write one then either. I love my son too much to say goodbye to him. Instead, before both surgeries, I crawled into bed with him, and held him, for hours. I stared at his face, and stroked his not-so-little-anymore-head. We chatted and giggled about farts, puns and tickles, until we fell asleep. If anything were ever to happen, that’s what I hope he remembers; I hope he remembers that the last thing I wanted to do was be with him, for as long as I possibly could, and that I wanted to fall asleep, with him in my arms.

Oh, and to say good-bye to Bryon? That’s literally impossible. It’s like saying goodbye to yourself. For both surgeries, as they wheeled me away, I screamed, “I love you!” over and over again, until it went dark. It’s just too ridiculous to say goodbye to your own soul, so I won’t even mention it.

Love you, Pumpkin-Butt.

Love you, Pumpkin-Butt.

Birthday Eve Staples

It’s my birthday, today! I LOVE my birthday. It’s the one day of the year that’s mine. It’s all mine. I don’t have to share this day with anyone else. I’m greedy that way. I am sure that other people have this birthday. In fact, I know they do. One of my college professors, who is a pretty great guy, has this birthday. But still, it’s my birthday.

I didn’t grow up in an especially easy house to live in. We had clean clothes, meals on the table, and enough money to send two girls to college. Lots of people would say that’s all a person needs. And, maybe it is. I got an education, and then, I got the fuck out of there.

I got the fuck out of there, did a few things, then made this person. Bryon claims that he helped, but most of the time, I take all of the credit. I recall doing most of the hard "labor."

I got the fuck out of there, did a few things, then made this person. Bryon claims that he helped, but most of the time, I take all of the credit. I recall doing most of the hard "labor."

But, if the laundry wasn’t put away, the mail was crookedly placed on the counter, or someone’s shoes were left by the front door, heaven help the kid who was closest to my mom when she discovered the error. Even if those things were done correctly, she’d find something to yell, smack, or otherwise punish about.

She’s older now, so her memories have faded into a more idyllic version of herself. She’s got grandchildren, so she’s mellowed into a foreign version of herself that I don’t recognize. She’s like the witch in Hansel and Gretel. She softly, and sickeningly lures children in with sweets and kindness; but, I keep waiting for her to cook them.

Yesterday, when I got my staples out, I was terrified; especially because it was my birthday eve. That’s a real thing! If Christmas and and Summer’s Eve get an “eve,” so do I. I didn’t want my birthday to be tarnished by pain, anymore; so, I was especially freaked by the staple appointment being scheduled for yesterday.

See, on my 18th birthday, my mom peeled out of our driveway, screaming, “you’ve ruined my life!” I’m pretty sure she got confused, because it’s the angst-y teenager that’s supposed to have the tantrum, not the middle-aged woman, right?

My happy family, and my happy family pictures erase all the bullshit of my past. :) Besides, look! Collin found a feather! And, it's absolutely an eagle feather. It's totally NOT from a pigeon or a seagull.

My happy family, and my happy family pictures erase all the bullshit of my past. :) Besides, look! Collin found a feather! And, it's absolutely an eagle feather. It's totally NOT from a pigeon or a seagull.

She had gotten angry with me me for opening the sliding glass door one too many times to model my new birthday outfits. She wasn’t paying to air condition the outside! I’m saving my “you’ve ruined my life” moment to use on Collin, for something similarly egregious, like a glass of spilled milk.

Prior to that, my birthday was always the best day of the year, for me. My dad used to set up treasure hunts to secret, special presents. There was never any yelling. There was never any hitting. It was always a good, special day. It meant a day of peace from the usual chaos that was our house. So, I vowed that, from then on, my birthday would always be a good day.

So, I didn’t want to do the staples yesterday. I had stitches last time, which barely hurt to remove. These staples were already more uncomfortable just being in, than the stitches were. I wasn’t looking forward to them coming out. I was being a baby about it. I wasn’t saying anything about it, but I didn’t like the idea.

Cute, right?

Cute, right?

No more than thirty minutes before the appointment though, I was playing in the sand, frolicking at the beach, with my husband and my son. My son was so excited to get to the water, he tripped and fell. He flew through the air, arms flailing over his head. He fell in the dance of limbs that only kids can do, a glorious display of excitement, then tragedy, as joy mixes with klutzy glory.

In the melee of arms and legs, he skinned his elbow. I kissed his sandy, dirty, bloody boo-boo. Thankfully, he didn’t fall on the needle, condoms, or homeless people, also scattered throughout the sand. Miraculously, my love, just my love, fixed what, to him, was a serious injury. I’d held him close to me, and he felt better. We both did.  My life couldn’t be more ideal, more perfect. Right then, something important occurred to me: I have nothing to fear, ever.

I love this picture of Collin because it's so...Collin. Bryon says, "thanks, it looks like I'm picking my nose." He's not. But, even if he were, we've all done it.

I love this picture of Collin because it's so...Collin. Bryon says, "thanks, it looks like I'm picking my nose." He's not. But, even if he were, we've all done it.

The staples came out easily. I won’t lie, each one pinched, and hurt. It’s especially important to remember that pinch for something like 30-ish staples. Oh, and that the doctor “saved” the worst one for last. But, I was a brave little chicken. One of the worst parts was that we had to leave for the appointment at 6 am, because it's in Santa Monica. Sooo early! Bryon joked with the doctor that he could’ve done it at home with needle-nosed pliers. The doctor was not all that not amused. I guess they don’t like it when you reduce medical school to something you can pick up at Home Depot. Who knew?

Staples coming out! If you look carefully, in the background, on the table, you will see an iPad, not being played with! Collin is allowed to play with his iPad only on the weekends, and at medical stuff. For him to put it down, and be interested in what the doctor was doing, holy crap. The surgeon asked if he wanted to be a doctor, and Collin said, "No, I want to be an FBI agent, an archeologist, a rock collector, and some other things too."

Staples coming out! If you look carefully, in the background, on the table, you will see an iPad, not being played with! Collin is allowed to play with his iPad only on the weekends, and at medical stuff. For him to put it down, and be interested in what the doctor was doing, holy crap. The surgeon asked if he wanted to be a doctor, and Collin said, "No, I want to be an FBI agent, an archeologist, a rock collector, and some other things too."

No amount of anything, at any appointment, could ruin my birthday. Not anymore.  If I’d made a single whimper, I’d have two hands, fighting to find a place in mine: a soft little one (probably full of rocks and shells), and a big, strong one. I never have to be afraid (or sad) again, of anything. What more could I ask for, for my birthday, than the family that everyone should have? This birthday girl is happy, for the rest of her life.

My perfect family. That boy looks like me, I think!

My perfect family. That boy looks like me, I think!

P.S. Can't wait to see how my BIRTHDAY goes!

 

The Tragedy: Ice, Ice, Baby

Because my surgeon, as we discovered in his order for me to withdraw from my pain meds before surgery, is a sadist, he also ordered that I sleep at a 45-degree angle until my staples are removed. I’m still doing this; I have a HUGE wedge pillow.

It's not quite 45-degrees, but it's close. And someone was terribly excited to demonstrate it!

It's not quite 45-degrees, but it's close. And someone was terribly excited to demonstrate it!

Imagine this for a moment. Imagine how your neck might slump to the side and then crinkle up, in a weird cramp. Now, imagine that someone just sliced through all your neck muscles, for the second time! Now, those same neck muscles crinkle up, while at a 45-degree angle. Oh, and there’s a relatively large line of staples in the back of your neck. Yeah, it’s super, super uncomfortable.

I’ve found that the thing that has made sleeping the most “comfortable,” besides copious amounts of morphine and muscle relaxers, is ice packs, nestled against the crook of my neck. I still wake up every other hour, but I sleep every hour too. It’s a nice trade-off. And yeah, I’m sure that this angle request is probably totally reasonable; I just hate it.

But, in the hospital, there was a terrible ice-pack tragedy. It’s a tale for the ages. Tell your children, and warn them of this potential danger, so they can avoid the same tragic fate that befell me.

There are two types of ice packs at the hospital: the gel packs, which stay “cold” for approximately eighteen seconds; and the bags of ice chips, which stay cold for hours. You have to activate the gel packs by snapping the thingamajig on the inside, and shaking them; they get cold instantly. On the other hand, the bags of ice chips take a while to get cold because they are paper-cloth; and, it takes some time for the cold of the ice to reach through the “fabric.” Once they are cold, they stay cold.

Ladies, you may remember the ice-chip bags from childbirth. I do, at least. I sat on a few in my day. Those, plus Tucks pads and that numbing spray that they give you are what saved my mangled lady bits. Ah, the miracle of childbirth; it’s such a beautiful, glorious time. Cough, cough. At least, that’s the party line we’ve agreed to so, we don’t scare off future ladies from having babies. Also, we have to pretend that it’s not filled with gore, and several weeks of what amounts to bits and bobs so swollen that you can’t sit comfortably.

Anyway, one night, one of my lovely orderlies brought me an ice-chip bag. I nestled it against my neck and I fell soundly asleep. I slept for hours, the kind of sleep that only exhaustion, pain and drugs can bring you. Then, tragedy struck. I woke up shivering and soaking wet. My legs were wet; my feet were wet. My arms were wet, and even my fingertips were dripping. I wasn’t wet. When I moved, drops of water flung off me like I was making it rain, and not in a stripper way.  

At first, I was convinced that I’d wet myself and was unsure how something so embarrassing could’ve occurred. But then, I realized that my back and hair were saturated. Urine doesn’t usually travel that far upwards, unless you’re upside-down; and I’d not been upside-down (had I?). Was I doing acrobatics in my sleep again?

I did what any rational person would do: I screamed. But, I had such an extreme muscle spasm in my neck that I could barely croak. So, it was a meek and pathetic sound. Thankfully, Bryon hears me when I make any pitiful sound. I think he worries about me; that silly man has developed some sort of attachment to me.

Don’t be too swayed by his adorable charms. Last night, in bed, he poked me in the eye. It was so bad that it ran for hours. The only problem with this, aside from my near blindness, was that we were both asleep (well, I was until he poked me in the eye). He didn’t wake up, even when I poked him back, to tell him that I was practically rendered a Cyclops. So, he’s not always perfect; or, I was being dramatic. One of the two.

I don’t remember who pushed the call button that night, but, Florencia came rushing in, her Super Nurse cape waving in the wind, with her needle of rescue pain meds in hand. I got nice nurse hugs to help calm me down, because by then, I was sobbing hysterically. Pain, mixed with soaking wet exhaustion is a lethal combination for me, I guess.

For me, pain doesn’t usually make me cry, at least not tears (last post excluded, but I can be excused – I mean I’d just woken up from having my skull drilled into). Chiari has raised my pain tolerance, at least for tears. If there are actual tears, it’s bad. I may moan, yell, complain, or make any other noises; but if you see tears, I’m pretty uncomfortable. I guess, this time, throwing ice water and exhaustion into the mix was just too much.

P.S. I could NOT find the Gene Wilder Version of the video above. Forgive my sins...I know I should be punished for it.

I also kept apologizing to the orderly, who had to strip and change the entire bed, at 3 am. I’d previously had the bed changed that morning, by a student nurse, I kid you not, took over an hour to do it. She felt it was her opportunity to chat with us, rather than do a more disgusting student-nurse job. The forced conversation was more painful than the brain surgery; but she was working it. She. Would. Not. Leave. Plus, she did a terrible job on the bed. We had to re-change it, after she finally left. But, other than that, the nurses were all along the lines of my hero: Florencia.

Anyway, it turned out that the entire ice pack had drained out while I slept. It was such a slow leak, that I’d not realized it, or felt it, as it slowly melted and drained. The entire bed was saturated. It’s shocking how much water an ice pack can make. It’s also shocking that I didn’t wake up until it was empty.

Add, tolerance to freezing cold water to my list of life-skills. Maybe it’s like water-torture?  Perhaps I can withstand a great deal before I break. When King (Czar? Maybe he’ll want to be called something fancier?) Trump takes his throne and he begins torturing the families of suspected terrorists, it will only be a matter of time until everyone is a suspect; so, maybe this will be an important life-skill.

I had to be “changed” too. I needed all new clothing, new underwear, socks, everything. I felt like a child. It was quite the pitiful show, really. Soaking wet woman in her mid-thirties, sobbing. Arched neck. Wet bed. If it weren’t an ice pack that had wet the bed, I’d have had a psych consult called to have me committed. Maybe I should’ve had one anyway!

I don't have any photos of the tragedy, or anything really to represent it. So, I offer you two photos of my adorable child instead. He was being quite the ham, with my pillow.

I don't have any photos of the tragedy, or anything really to represent it. So, I offer you two photos of my adorable child instead. He was being quite the ham, with my pillow.

Once I was changed, and the hysterics died down, I was relatively comfortable again. But, consider yourself warned, ice-bags can leak! We checked it in the postmortem, and discovered that it was not over-filled, as suspected. It simply sprung a leak along one of the sides.

Ice-bags: the danger you never knew lurked in the hallways of your hospital. First staph, then MRSA, now hypothermia.

Beware!  

P.S. Staples come out tomorrow!! Yikes...

Surgery 1 vs Surgery 2 - And Tales of Being High

A little Chiari education for the masses. If you Google Chiari, it will tell you that it’s basically common, and no big deal. Meh, I’m here to tell you that anything involving brain surgery IS a big deal. And, anytime they touch the brain, it’s considered a traumatic brain injury (TBI), you know, that thing that’s a big damn deal? It takes at least a year to heal from any TBI. So, what’s brain surgery like, and how was one different from the other?

Top left: first day post-op for this surgery (coming off the massive dose of drugs, so sedated that I couldn't stay awake for my baby's visit, nor could I care that I looked like death); Bottom left: second day for this surgery, MUCH better, but still looking crappy; right, second day for first surgery. P.S. in that bottom left picture, check out that plaque! Collin won a science award at school. He's pretty freaking amazing, if you ask me.

Top left: first day post-op for this surgery (coming off the massive dose of drugs, so sedated that I couldn't stay awake for my baby's visit, nor could I care that I looked like death); Bottom left: second day for this surgery, MUCH better, but still looking crappy; right, second day for first surgery. P.S. in that bottom left picture, check out that plaque! Collin won a science award at school. He's pretty freaking amazing, if you ask me.

My first surgery, in general terms, was called a decompression. In greater detail, but still generally speaking, I had the following:

Craniotomy

My skull was cracked open to relieve the pressure that my brain’s inability fit inside was putting on itself.

Craniectomy

This is the technically term for the bit of my skull that’s taken out

Laminectomy


My first vertebrae (C1) was shaved down, like you might do with a cheese knife. This was to provide better access to both my skull and my spinal cord. Also, the nerves in that area were under a great deal of pressure from the hangy bits (cerebral tonsils) that had been pressing way too hard, for way too long, cutting off fluid, and causing nerve damage. This pressure is how Chiari patients get both nerve damage and become paralyzed.

Dura Graft with Host Material 

When skulls have big holes in them, they need to be patched up before the surgeon closes. Surgeons have three choices: synthetic mesh (the highest complication rate), bovine pericardium (cow heart), or a piece of the patient’s own dura (harvested from the patient’s body). The dura is the thin sac-like material that your brain sits in.

I always like the term “harvested,” because it suggests that your body, knowing it will need “extra,” sets up some kind of field, growing that material. In my imagination, there’s rows and rows of dura bits, and the surgeon just plucks out what he needs. In reality, the surgeon just slices out a small bit, from further up, and pulls it down to the spot he needs.


I woke up from my first surgery, in la-la land. I was relatively comfortable, on a pain-pump, and remember virtually nothing of the first 24-48 hours. I do not remember, in fact, why I was wrapped in a turban, by the time I reached my room. I was told, that I insisted upon it, in recovery, and that I refused to leave the room without it. Apparently, I was adamant that I needed it. A turban. As I often get cold when I wake up from anesthesia, I guess it seems reasonable to assume I wanted warmth; but the turban seems a bridge too far, even for me. Although, I am crazy.

Not a turban this time, but it's still a bit ridiculous. This is the recovery room, and I'm finally feeling "better" enough to be moved to my regular room. This is the "good" look. At this point, post-op, I have about a zillion and one drugs in me.

Not a turban this time, but it's still a bit ridiculous. This is the recovery room, and I'm finally feeling "better" enough to be moved to my regular room. This is the "good" look. At this point, post-op, I have about a zillion and one drugs in me.

This time, generally speaking, I had the opposite procedure(s):

Cranioplasty


Instead of a big hole being cracked into my skull, I had a hole patched up. There are fancy terms that describe it better, but the gist is that a hole is fixed with my own material, or synthetic material. Since I don’t grow titanium, to be harvested from a field, or otherwise, it’s safe to say that synthetic material was used. There are fancy terms for the muscles involved and the other things, but the important part is the cranioplasty.


This time, I remember every second of the recovery room. Well, I take that back; I remember the pain. I am in and out on the remembering bit. I remember medical personal shuffling around, in a panic, shouting things like “Her heart rate! We have to get it under control!” and “It’s nearing 150!” I remember someone, actually shouting, “Ativan! Ativan! Hurry!” Apparently, 150 is too high. Who knew? Also, who knew that pain can do that to your heart rate?

I remember, literally, crying and sobbing for Bryon, and finally convincing them that he would help calm me, not hinder their efforts in caring for me. And, I was right; he did help. I don’t remember seeing him, so much as I remember feeling him there, and holding his hand. I remember that as soon as I felt his hand, I felt calmer. I was able to stop crying. Even though the pain level was the same, the terror associated with it abated.

What I don’t remember, is that, apparently, they had to give me enough pain killers to kill a small village, because my tolerance was still relatively high, even though I’d gone through withdrawal. I also don’t remember that I was incredibly high from those pain meds, which made me very entertaining to those around me.

Bryon, while very doting, as always, took the opportunity to write down my most amusing doped-out quips. He realized I was high, I guess, when I pointed at the divider curtain, and said, “Look at that, the stripe-y pattern is moving up and down, like it’s an elevator!”

Hi...I'm high. Also, it's a good thing. I've just had brain surgery.

Hi...I'm high. Also, it's a good thing. I've just had brain surgery.

While eating ice chips he was spooning to me:
I don’t know who makes this cereal, but it’s bland. But, I bet if you added milk to it, it would make good ice cream!

Awaking from a brief snooze:
I was just being chased by Teen Wolf! We had to brush our teeth!

Awaking from Another snooze…or Maybe Not...It's Impossible To Be Sure!?
Rachel: Was I just watching Yoga Hosers before I went to sleep?
Bryon: No
Rachel: Was Jason Lee in my room?
Bryon: No
Rachel: Was Kevin Smith?
Bryon: No
Rachel: Phew. Good thing I asked before I told people that, because I was pretty sure it was true.
Terrible picture of me...Sorry Jason Mewes, apparently, I didn't care if you had been in the room. I was only concerned about Kevin Smith and Jason Lee. Frankly, you were always my favorite, but in my dopey state, I didn't remember that.

Terrible picture of me...Sorry Jason Mewes, apparently, I didn't care if you had been in the room. I was only concerned about Kevin Smith and Jason Lee. Frankly, you were always my favorite, but in my dopey state, I didn't remember that.

I remember none of this. I remember pain. I remember suffering. But, I also remember holding my husband’s hand, of course, his faithful and true hand. At least this time, like the turban, I was an amusement to those around me.

I snapped this picture after my first surgery. This is my husband, sound asleep on the chair-bed, next to my hospital bed. He set his phone alarm to go off, every ten minutes, so I could push my pain-pump meds and never get behind on my meds. To say he didn't get much sleep is an understatement. So, I'm glad he got some amusement from my pain meds this time.

I snapped this picture after my first surgery. This is my husband, sound asleep on the chair-bed, next to my hospital bed. He set his phone alarm to go off, every ten minutes, so I could push my pain-pump meds and never get behind on my meds. To say he didn't get much sleep is an understatement. So, I'm glad he got some amusement from my pain meds this time.

Inconveniences of a Hospital Stay

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

The Bathroom

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

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

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

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

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

The Sponge Bath

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My Crappy Haircut

My surgeon shaved a significantly larger portion of my hair this time, than my surgeon shaved of my head last time. Certainly, this is not my call to make; I’m not in charge of how much to shave. Nor, am I in a position to question why such a call was made. However, I am in a position to say that it makes me unhappy. I like having hair. It’s why I chose to have it.

Sick people don’t like complaining. We even get tired of hearing ourselves! Outside of complaining for a purpose, I try not to do it too much. For example, I complain thousands of times a day about how much my head or neck hurts, about the quality of my pain, the type of it, and the location; however, I do this to help log my pain for the specific purpose of medication management.

But, when I complain about something else, something specific like my hair being shaved, it’s probably because I’m pretty upset about it.  My doctor was pretty bummed when I complained to him about how much hair he’d shaved. See, we’d had a little heart-to-heart about how much he was planning to shave. I thought we were on the same page. I know I’m not supposed to care as much about my hair as I do about my brain and my recovery. But, I do. When I told him I was a little upset about my hair, he looked at me as if I was about to sue him for malpractice. Apparently, my hair comment trumped the superfluous thankfulness. Frankly, I think his surgeon’s ego is a little sensitive.

Gross! Blood! Guts! Spinal Fluid! Ick! But, worst of all, so much hair is gone! This is the day I woke up. I had to leave the bandage on for three days! It kept peeling up, because I had to ice it so often, and the edges kept getting wet. To counter-act this problem, the nurses would slap more tape right on top of the old bandage. When it was time to take the bandage off, this meant there were several layers of thick, new tape to peel off. The resident just yanked it right off, fully attached to the hair that  was  there. It was...unpleasant.

Gross! Blood! Guts! Spinal Fluid! Ick! But, worst of all, so much hair is gone! This is the day I woke up. I had to leave the bandage on for three days! It kept peeling up, because I had to ice it so often, and the edges kept getting wet. To counter-act this problem, the nurses would slap more tape right on top of the old bandage. When it was time to take the bandage off, this meant there were several layers of thick, new tape to peel off. The resident just yanked it right off, fully attached to the hair that was there. It was...unpleasant.

But, his reaction is not so annoying. What’s annoying is the common reaction of, “it’s just hair,” or “it’ll grow back.” Those stupid platitudes about what, I understand, is just hair. I know. I know. I KNOW. I realize that there are countless other things that I could be worried about right now, and I’m lucky to be freaking out about my hair. I could be hooked up to life support, with a ridiculous case of meningitis, or an infection. Or worse.

There’s this thing that people do when sick people complain: they offer platitudes to try to ease their own suffering, or discomfort at hearing a loved one (or even stranger) complain. The problem is, it doesn’t ease the sick person’s suffering. It eases the suffering of the person offering the platitude. Think about it: when you hear a sick person complain, you are uncomfortable because you don’t like knowing someone (you care about) feels icky. Furthermore, you know that you can’t really do anything to make it better, but, you want to do something. Knowing you can’t fix it makes you even more uncomfortable. To ease your discomfort, not theirs, you offer some empty platitude. This does nothing for the sick person, but superficially, you think “phew, I did something,” and you can think “at least I said something positive!” In your mind, you think that maybe this will make them think positively. Ugh.

Here’s the thing though: it’s my hair. I’m entitled to feel crummy about it. I’m entitled to feel like crap about walking around for a couple of years, looking different than I want to look, different than I’ve looked for over ten years. Imagine waking up tomorrow, different, in a way you have no control over. Now, imagine someone telling you to be grateful about it, because it will go back to “normal,” eventually.

There, all cleaned up and without a bandage. This is a pretty accurate depiction of what I'm dealing with, hair-wise.

There, all cleaned up and without a bandage. This is a pretty accurate depiction of what I'm dealing with, hair-wise.

Can we be realistic, for a second? How long do you think it takes for a shaved head to grow back to it’s previous length? I have really long hair, and now, for over a third of my head, I have no hair.

Apparently, I’m supposed to feel grateful for, and not care about my bald spot. I’m supposed to feel like it represents a successful surgery, right!? Plus, I’m supposed to be super happy, because the rest of my hair will “cover” the shaved area. Newsflash, it doesn’t entirely cover it, unless I wear my hair down, and stay completely still. This sounds completely reasonable, as I do tend to stay 100% still, 100% of the time. Furthermore, I am grateful for hair that is reduced in thickness by over a third. It looks luxurious and full. Wait, no, I’m not. Hold on, I’m sounding sad again.

Vanity aside, what’s bothering me the most is that, from the back, I’m identifiable to anyone on the street, as only one thing: a patient. If you saw a person with a shaved head, and a large scar going halfway up their head you would think one of five things:

  1.             What’s wrong with him/her
  2.             What happened to him/her
  3.             Did they have cancer
  4.             MAYBE are they contagious (if you are a germ freak!)
  5.             Oooh…isn’t s/he brave

The worst of this is that now, I’m ONE thing: I’m Chiari (if they ask). If they don’t ask, I’m just some medical “thing,” to strangers. Without this bald thing, I’m faceless and nameless to strangers, which allows me to be whoever I truly am. I’m so many things other than a patient.

An attempt at "prettying" up the bald. It's been braided so many times that the ends are frayed and disgusting. Nothing really hides that it's bald under there. And, i have to keep the incision mostly open, for now.

An attempt at "prettying" up the bald. It's been braided so many times that the ends are frayed and disgusting. Nothing really hides that it's bald under there. And, i have to keep the incision mostly open, for now.

Now, this hair thing has made me a prisoner of its causes and definition. It makes me want to wear a t-shirt with other things printed on the back. I want it to say that I’m also a writer, an artist, a mother, a student, a wife, a reader, a lover of animals, so many other things. I’d fill the shirt up with small print. I’m not just a bald head to be stared at.

It’s funny, sometimes I’m proud to show my status as Chiari Warrior, as “zipper head,”[1]; but other times, I want to be able to put my hair over my scar and be able to let it be a secret identity. By having so much hair shaved, I’ve been robbed of the ability to have that identity kept as secret as I want it to be, at least for a while.

The picture on the left is my incision from the surgery I had last year. the two on the left are my "new" incision. One is immediately after surgery, and one is about a week later. The staples come out in a week. While I've had significantly more hair shaved, it does appear cleaner.

The picture on the left is my incision from the surgery I had last year. the two on the left are my "new" incision. One is immediately after surgery, and one is about a week later. The staples come out in a week. While I've had significantly more hair shaved, it does appear cleaner.

So, tell me “it’ll grow back,” or “it’s just hair,” all you want. But, if you want to say that, I challenge you to shave all your hair tonight. Or, I challenge you to dye it all green. Do something drastic that you cannot change, that would force strangers to question who you are, or what you are, on the street. Then, be grateful about it. Be grateful that you aren’t dying, or that it’s not worse.

A failed attempt at "pretty-ing" up! Good Gawd! I can't wash my hair as much as I'd like, because of the incision, and because of the braiding, it's crazy frizzy. I look like Cousin It! 

A failed attempt at "pretty-ing" up! Good Gawd! I can't wash my hair as much as I'd like, because of the incision, and because of the braiding, it's crazy frizzy. I look like Cousin It! 

 

[1] In looking up whether or not to hyphenate “zipper head,” I learned that, apparently, that’s a super derogatory term for people of Asian descent, coined during the Korean war. Who knew? Chiarians have re-appropriated it to describe themselves, based on their scar, but now I don’t think I’ll use it anymore, especially since it’s based on the same description (zipper-like scars). We describe our own scars, and apparently GIs described running over Koreans with Jeeps leaving zipper-like marks on their heads! Yikes. It’s like claiming a racial slur and making it positive. Um. No.