One Week Update: August 9

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

 

Preventative:

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

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

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

 

Abortive:

  • Imitrex (100 mg dose)

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

  • Fiorcet (not the one with Codeine)

  • Zofran, when needed

 

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

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

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

 

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

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

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

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

 

Registration for Fall Classes


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

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

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

Speaking of Dreams

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

 

Manicures

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


Peri-menopause

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

Hot flashes anyone? Just me? Okay.

Hot flashes anyone? Just me? Okay.

Kids…and Lice

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

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

 

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

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

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

 

Kids…and Middle School

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

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

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

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

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

Time Does March On

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

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

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

My Knee

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

tenor.gif

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

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

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.