Pain Management: Lifesavers

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

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

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

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

 

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

 

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

 

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

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

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

 

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

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

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

 

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

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

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

 

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

 

Dr: Probably Diana?

 

R: Yes! Diana!

 

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

 

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

 

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

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

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

 

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

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

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

 

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

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

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

 

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

 

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

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

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

 

She ended the appointment with this:

 

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

 

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

 

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

 

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

 

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

Fulkerson Recovery, So Far: By the Numbers

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

My nurses, making sure i get lots of rest.

My nurses, making sure i get lots of rest.

So, in no particular order…


Weeks, to the day, since surgery: 3

 

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

 

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



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

 

Blood clots I’ve managed to accumulate: 2

 

 “Dangerous” blood clots: 0

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Birthdays that I have had during recovery: 1

 

Years on this planet: 41

 

Years I thought I had on this planet: 42

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

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

 

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

 

Days I spent on my last homework assignment: 2

 

Weeks left of the semester: 6

 

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

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

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

 

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

 

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

 

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

 

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

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

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

 

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

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

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

Popping Pills

This is my pill case.

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

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

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

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

Topamax

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

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

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

Gabapentin (Neurotinin)

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

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

Cymbalta

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

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

Stool Softeners

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

Synthroid

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

Clonidine

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

Benadryl

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

Drugs That Aren’t in the Daily Box

Oxy

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

Muscle Relaxers

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

Various Migraine Abortives

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

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

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

 

It's NOT a Fitbit!

It’s not a Fitbit. Fitbits are stupid. They are for housewives who polish off their whipped coffee drinks in the locker room, as they change for Pilates, and then pop by the smoothie bar on the way out, log their workout, and then wonder why their logged calories don’t add up to weight loss. They’re for people who can’t figure out what to do on their own. I hate them. Fitbits are for out-of-shapers who need something to tell them that they are out of shape, in a gentle reminder way, for a few months, before they get put in a drawer and never worn again. That’s why this isn’t a Fitbit. Shut up.

I used to be a lot of things before I got sick. The thing that I miss the most is the insanely motivated, insanely fit woman who couldn’t be drug out of the gym, even when she should’ve been drug out of the gym. There was no excuse good enough for me to miss a workout. Rain, sleet, snow, flu, fuck that shit, I was there. I still have extreme cold weather running gear from running in Michigan in sub-zero weather. I have dozens of pairs of weightlifting gloves, not because they are cute, but because I actually use those bad boys. I know my way around a Smith machine, just as comfortably as I do around the girly elliptical. I used to spend two to three hours there before work in the morning. Seriously. I love the gym. I once bruised my leg on a free-weight, just by being clumsy, that I left a slight scar. I don’t screw around; it was a 50-lb weight, that I had just been curling.

But, last week, at my neurologist’s appointment, where we sat waiting for a nerve block (btw: more on what a nerve block is, and a rhizotomy later - I bet people want to know that, huh?) to help stop this insanely long headache-patch, Bryon pointed out just how long Chiari has taken from me. In passing, he mentioned something that happened a little over two years ago. It was like an epiphany. It felt like someone opened a curtain and let the light in, and I’d never realized a window was even there before. It’s been over two years. Two years. Two years of my life, the life I used to have, that’s slowly inched away, been robbed away by Chiari, including one of the most important things in the world to me, my physical fitness. It’s not vanity, not my body, per se; I still look relatively the same. In fact, I’ve lost some weight because I lost a lot, and I mean a lot of muscle mass. It’s more of a sense of well-being, and a sense of accomplishment in one’s own body.

I’ve been sitting around, waiting to feel better, to feel good enough, to push harder, to be better, to get on a roll. That day is likely never going to come. Every day, I come up with a reason that I can’t work out, because I can’t work out the way that I would’ve used to have done. Whoa, that’s a crazy use of a lot of varied types of past tense, right? It may or may not be correct. Who cares? Anyway, I can’t do that anymore. If I keep waiting to be my strongest, I will only continue to be my weakest. I have to work with what I have, to build up to what I can be. The idea of resting until I’m better will only make me sicker, and weaker. I have to stop “exercising” a few days a week, and exercise every day. Period. It’s time to change. If I want Rachel back, she’s got to be back in spirit.

One of the symptoms that I brought up to my doctor was that my grip strength has gotten so poor, that I can’t pick up heavy objects anymore, and there is concern that the nerve damage in my spine has reached my hands. I can’t, for example, pick up my laptop, if it’s on its side. Or, I can’t pick up small objects, if they are heavier than, say, a small book, with only one hand. I can’t grip them, and simultaneously lift them. Bryon mentioned that between loss of strength, and lack of appetite, I may just be fundamentally weak, not suffering damage; and it occurred to me that the time that’s passed between Gym-Beast-Rachel, and Now-Rachel, it’s just been, well, longer than I realized. When days blur together, it’s hard to realize they are passing so quickly.

Which brings me to the not-a-Fitbit. I always thought these things were stupid. And, frankly, they are. But, I’ve tried a number of things to get me motivated to get myself back on track, and none of them have worked. There’s always a reason to wait until tomorrow, when I might feel better, stronger, different. But, I never do. I have put my goals in a calendar. I’ve written logs. I’ve followed other people’s plans, which of course didn’t work. Has someone else’s plan ever worked? A plan always has to be yours. I needed something to make me feel accountable, to myself, in a way that I couldn’t escape. Alas, the stupid not-a-Fitbit. Can you tell I think they are stupid, yet? And of course, I can escape it. I can take it off anytime I want. I can stop logging. Whatever.

Like the attack cat scratches on my hand too? Loki likes playing "blanket monster," which to him is attacking all things that go "bump" under the surface of blankets. He purrs away, while simultaneously trying to murder me. It's fun for all of us.

Like the attack cat scratches on my hand too? Loki likes playing "blanket monster," which to him is attacking all things that go "bump" under the surface of blankets. He purrs away, while simultaneously trying to murder me. It's fun for all of us.

Still, this is evidence that Facebook advertising works. I’m also considering a mattress in a box, like Purple, or Casper. Damn targeted advertising. I don't even need a mattress! I’ve seen ads for this thing for years now and always scanned right by it, thinking, “blah, another one of those dumb things.” Whelp, they got me, now. Anyway, this is a Bellabeat, Leaf. Specifically, it’s the Urban model. It’s the more expensive one, merely because I’m small, and this one is a few millimeters smaller than the original. As you can see, it’s already quite large, if I wear it as a bracelet, which means I didn’t want it any chunkier than it had to be! It comes with the bracelet, and an attractive silver necklace, if you want to wear it that way; or, you can clip it to your clothing. It’s super light-weight, and I’ve already gotten compliments on it. I doubt I’ll wear it as a necklace much, as I’ve worn the same necklace, every day, for almost ten years: the one Bryon gave me when Collin was born.

The Bellabeat Urban. Ooooh. Fancy.

The Bellabeat Urban. Ooooh. Fancy.

I’ve only had it for a few days, and I’m still in the “I love it stage.” It tracks every step I take, lets me track my activities, tracks my sleep, and tracks how stressed it thinks I will be, based on whether or not I’ve done enough calming activities throughout the day, including yoga and meditation exercises, which it has pre-programmed into its memory. And, of course, it tracks my period. I love the meditation. My therapist has been after me to start meditating for months, and I guess all I needed was a needlessly expensive device to force me into it. I’m not sure why I was so resistant to the idea of meditation; it was surprisingly relaxing, and I actually can’t wait to do it tonight. It was immediately calming. It wasn’t so calming when I invited Collin to join me for morning meditation. He’s not cut out for meditating, at least not without some practice.

Disappointingly, it gathered enough data in the “getting to know you,” stages, that rather than targeting my daily step count goal at 10K steps, it thinks I should only be aiming for 6K steps, which is 4K steps lower than the daily recommended count from the CDC. Yeah, I’m that pathetic. I’ve been walking pretty regularly, and have even started “jogging” a few times a week, for a few minutes, at a time. By jogging, I mean what most people would consider walking briskly; but, it has to start somewhere. I’m okay with that. It matters that I’m doing it, not that I’m doing it quickly. I hope to be doing it more often, and more quickly, eventually. That goal is good enough for me, right now. To continue doing it regularly has to be the sustained, and sustainable goal. I’m breakable now.

And, the goal-targeting is already working on me. I wasn’t satisfied with my step-count today, so I walked more. I’m sure this phenomenon is not unique for a new not-a-Fitbit wearer, but I know me; and I know that this feeling won’t wear off. It’s a kick-start. I explained to Bryon this morning that, I feel like getting myself back to myself, is like standing at the bottom of a hill, pushing a large rock, and once it gets to the top, I’ll be fine, because the downhill, is back to normal. But, before that, the rock is heavy and difficult; I need nudges and help. I already feel more like myself, monitoring my every move, and making sure I’m doing exactly what I’ve told myself to do. Every rep, every step, every day. I need to be accountable to someone, even if it’s myself.

I know that the real Fitbit is probably “better.” It probably does more, and would do neater things; but I hate them, and they are stupid. Have I mentioned that? So, I’m happy with this one. Shut up about your logic. The targeted goals in all the areas that I need to be focusing on here are going to help me not waste another two years: sleeping better, exercising better, and finding ways to release stress for pain relief. Yay for it not being ugly. Well, not as ugly as it could be. At least it’s not a hot pink, or boring black, plastic bracelet.

New Year: New Headache!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Withdrawl Checklist

I’ve tried to write about withdrawal so many times since I started this whole process. My neurosurgeon wants me off all my pain control before he puts the titanium plate in my skull. He is worried that because I’m small, anesthesia is risky with how much pain control I was on; plus pain management post-op is difficult when you are already opiate-tolerant. Have I mentioned that I’m getting a titanium plate in my skull? Exciting right? Collin wants to know if he will be able to put magnets against my head. Is titanium magnetic? If so, how thick is your skin over your skull?

But, every time I start to write about this topic, I have to delete the whole thing. Here’s the gist of what I delete:

  1. I’m not a drug addict. I’m a patient.
  2. Dependence and addiction are DIFFERENT THINGS!
  3. Dependence, and subsequent withdrawal, isn’t a punishment that I deserve. It also hasn’t taught me a lesson.
  4. Dependence, and subsequent withdrawal, isn’t a punishment that drug addicts deserve. It also doesn’t, or shouldn’t be used to teach them a lesson.
  5.  If you think 3 and 4 are true, at any level, you are an asshole, and you understand zilch about neither dependence, nor addiction. Read a damn book, or talk to a real person, instead of listening to CNN, or popular media.

So, I gave up. I decided to just ignore most of my ranting and raving. Here’s what I want to talk about instead: what I have learned you need, when it’s time to go through the process. My doctor and I planned a long withdrawal. I was on a lot of pain meds, and instead of doing the process all at once, I did a slow, long taper. It took months, but when it was time to do the Fentanyl patches, there’s no slow. Each patch came off whole, and each one sucked. There was no way to make it easy.

Everyone knows the basics. You need pajamas, towels, the easy, obvious stuff. But, what else do you need? Well, here’s what you need!

A Supportive Husband/Family

The “glamorous” symptoms of withdrawal get all the attention: vomiting, shitting, sweating, shaking, invisible bugs. No one mentions the irrational crying and mood swings that come with it. Ask my husband; this symptom is just as irritating as the others. Without a supportive person to hug you when you start crying about dropping the remote, and then to immediately retreat when you say, “stop touching me, it’s so hot…wait, I need a blanket,” withdrawal is, essentially, impossible.

A Good Doctor

Your GP is not good enough. You need a doctor who actually knows how to properly taper you off of pain meds, and how to provide you with palliative medications to help ease the process. I got non-addictive meds to help with the shakes, anti-nausea meds to help with the vomiting, anti-histamines to help with the sneezing and snotting, and meds to help with the, yes, pooping. People know you vomit; people don’t always know that you sneeze and snot, a lot (a rhyme!). Withdrawal sucks; go to someone who gets it. Most people don’t ask, or understand any of this; they think that withdrawal is, essentially, a punishment you deserve for taking “drugs,” in the first place. Fuck those people, and go to someone who is both sympathetic, and understands that dependence and addiction are different things.

Courage

People are assholes. Lots of them. Even your closest family and friends. They are bolstered by the news media and public perception of blurred lines between drug addicts and patients. So, they say stupid shit about your needing to take your medication. Have the courage to tell them to shut the fuck up, or that what they are saying is inappropriate. Or, just don’t talk to them. By the way, even drug addicts deserve compassion and sympathy, in my book. No one chooses addiction; they chose their first hit, but they likely took it to numb something, some kind of horrible pain in their lives. It’s no different than the reason I take my medication; I take it to numb horrible pain, too. Now, they are stuck in a dependence situation, too. I feel badly for them. I don’t envy the pain they’d have to be in to get out of it. Compassion goes a long way, in this world.

Netflix, Hulu, Amazon Prime, Etc.

You will be awake a lot. Another withdrawal symptom people don’t realize is troublesome is the intense insomnia. I had to withdraw from my Fentanyl patches in three stages. The first patch, I was awake for only two days; the second, I was awake for three. The last patch, I was awake for four full days. And, on that last patch, I still slept shitty for the two days after that initial four days. Try that sometime. Just stay awake, fully awake. But also be freezing cold, while simultaneously dripping with sweat. Meanwhile, imagine that you are covered with invisible bugs that are not on you, but inside of you, crawling up and down you, attempting to escape through your muscles. It’s good times. But hey, you can watch television to pass the time. Someone once said to me, “it must be nice to be able to rest and watch T.V.” Yeah, it’s fucking vacation.  

Rice, Plain Pasta, Ginger Ale. Gatorade and Salt

You’ll eat almost nothing except dissolvable anti-nausea pills, but your mouth will be too dry to dissolve them. Then, you’ll realize that you haven’t peed since yesterday, so you should drink a Gatorade. Buy the food you’d buy if you had the stomach flu. It’s a great way to lose weight, but I don’t recommend it. Thanks to withdrawal, I’ve lost eight pounds; but, it’s because I think I shit out a hot dog that I ate in third grade.

Moments of Joy

In the throes of withdrawal there will be almost no joy. This past Sunday, Mother’s Day, I said, to Bryon, “if this kills me, please don’t save me. Don’t call 911. Let me go.” I said it because the removal of my last Fentanyl patch triggered a Chiari headache. Chiari headaches can feel like a stroke, or an aneurysm. It’s often how Chiari gets diagnosed; patients end up in the ER because they pass out, seize, or the pain is so blinding that they get put in an MRI. It’s what happened to me. After four days of hard-core withdrawal, I was in agony. I sincerely thought my body wouldn’t make it. But, only a few hours earlier, there was a pair of peacocks in our front yard. They had wandered down from the hill and were squawking to one another. My son and I sat on the porch and watched them for a few minutes before they meandered away. Those five minutes were the happiest five minutes of my whole weekend, even though I had to lean on him. It’s all I had to hang onto for several days. It’s still all that I have, as I wait for my surgery date, aching, with no pain control in my body. Find those moments, because if you don’t, you’ll give up.

A Present or Reward

After I got through each Fentanyl patch removal, I bought myself a reward. I deserved it. It’s like finishing a marathon, being run through hell, in August. I set a goal when I started, which was not to vomit. My doctor laughed, saying it was basically impossible. He also told me that the long withdrawal, versus the short one, is almost impossible. The best way to get me to do something is to tell me that it’s hard and that I might not be able to do it. So far, I’m 100% vomit-free, and I’m almost done with the long withdrawal. A few days of this process, it was by sheer will, but it still counts. That’s a reward in itself, but so is the UPS driver delivering a package from Anthro. The doctor? He’s impressed with me being through it, and even more impressed with the vomit-free. At the last appointment, he said that almost no one makes it through this; he has to admit almost everyone, at some point, because they give up. He said he had no idea how tough I’d be. Don’t ever tell me I can’t do something; but, I need a present for doing it. I may be tough, but I like shiny things.

There’s nothing I (or anyone) can say that will make withdrawal easier or better. It sucks. But, it ends. There’s a peak, and then it eases up. One person will say that theirs lasted X days, and then the next will say Y, and so on. So, there’s no rhyme or reason, and you can’t predict it. Just ride it out. One morning, you’ll “wake” up from being awake, and you’ll start to feel better. It will end, even though it feels like it won’t. I think that’s the worst part of it, the feeling that it won’t ever end. Just keep repeating: this will pass.