Gotta Catch 'Em All!

So, today saw three major milestones!

I finally made it up to the second floor of the house (with a little help and a small rest halfway up), and because of that, I finally got to take a shower in my own home instead of going all the way out to the base. This doesn't mean that I can move back into my bedroom just yet, but it does mean that we're getting close to that point.

I'm also borrowing a cane to try out for short distances and stairs. So, now I have pretty much the entire spectrum of mobility aids at my disposal: an electric wheelchair (for going out on my own), a manual wheelchair (for going out with someone else who's driving), a four-wheeled walker (for around houses), and a cane. Hopefully we'll be able to eliminate the need for at least one or two of those soon, but only time will tell. In the meantime, I'm set for everything from stepping out to get the mail to going across town (and beyond!).

Thanks for the Lemons, Life

Before I begin, let me assure you all that I'm home now and doing very well. Living in a living room isn't ideal, but it's better than living in the hospital. I'm also using a walker around the house now, and started physiotherapy as an outpatient.

So, what's got me writing this time? Well, it occured to me recently that this illness is going to force me to make a life-altering decision much sooner than I had counted on making it. You see, part of my treatment includes methotrexate, a form of chemotherapy. I'm lucky that it doesn't seem to be having any side-effects, but that doesn't mean that it's not powerful stuff. It can wreak havoc on an adult, but it can cause very serious complications when a pregnancy becomes part of the picture.

Which is why I need to speak to my doctor about potentially getting my tubes tied. Pregnancy can trigger a flare-up of miositis, and given that my form of the disease seems to strike hard and fast, there's no way I could last 9 months without medical treatment. If a flare were to occur while I was pregnant, there's a chance that it would be me or the baby. Thinking about that is uncomfortable at best; I feel like I shouln't have to think about decisions like this at my age. So, getting my tubes tied would certainly be one way to avoid that risk entirely.

Given that I wasn't planning to have kids anyway, you'd think this wouldn't bother me. And yet, it does; my disease might end up taking away my decision about this. Not that childbirth is the only option in that regard; adoption is always an option, as is spoiling the heck out of nieces and nephews. It's just very unpleasant to realize that I might have to make such a major decision like this before I've even started my adult life. At least I have some time; I need to heal from this first, and that's going to take a while yet.

An Open Letter to My Immune System

Dear immune system,

We've been through a lot together, haven't we? You even started protecting me from all the various diseases in the world before I was old to recognize that my reflection wasn't actually another baby! Mom and Dad made sure you got the best possible start on your career by getting us our vaccinations, and I took up the reins in that arena by voluntarily going for flu shots. Admittedly, I should have gone for my flu shot every single year, especially that year we got what was probably H1N1, but that's neither here nor there. I've always trusted you to be there for me, and you can't say I didn't try to keep you in good, robust condition.

We're going to be going home from the hospital on Tuesday. I know you'll be looking forward to not having to fight off any bacteria that the weekly bloodwork might have introduced into my bloodstream, and I'm sure that antibiotic-resistant bacteria that managed to sneak in will be crowded out by all the normal, benign bacteria at home in no time. There's a reason the resistant strains really only thrive in hospitals, after all. I'm also really happy that you seem to have settled down into medical remissin (CK of 344! That's within normal range!).

So let's make a deal, okay? If you promise not to attack my muscles, my organs, or any other healthy part of me, then I promise I'll stop suppressing you with things like prednisone and methotrexate. I don't want to suppress you, believe me; I need you to keep me safe from the world as well as any mutant tissue in me that could turn into tumors if it's not destroyed. But damn it, if you're going to attack me, then I have to take steps to save us both even if my liver and my bones don't like it. Seriously, have you spoken to my liver lately? It's producing some sort of enzyme at a bit of an elevated rate; not enough to worry my healthcare team, but just enough that we all want to start tapering off the methotrexate dosage right away. As for my bones, I'm sure they're grateful for the medication and supplements I'm taking to keep the prednisone from leaching the calcium right out of them, but we can't keep up that routine forever.

So please, immune system, try not to attack me anymore. I'll even sweeten the deal for you, okay? I'm going to try to eat more fresh foods that will bolster your fighting power, and I promise I'll keep up with the daily exercise so that you'll have a nice, robust environment full of beneficial hormones to work in. Sound good? I certainly think so!

XOXO

-Scarlet

Thanksgiving 2014

In the spirit of this pirated holiday, I'd like to express what I'm thankful for.

I'm thankful for this disease, whatever label is ultimately applied to it. I know this seems surprising, but without it I never would have faced the very real prospect of dying, I never would have been introduced to Buddhist philosophy and practices, I never would have found out just how strong I really am, and I never would have had my eyes opened to the reality that people with physical disabilities and chronic illnesses have to live in. I know it's inspired some of you to take selfless actions like donating blood, and I'm thankful for that, too.

I'm thankful for my family and friends. Apparently, I have a good judge of character after all, because none of them have abandoned me because of my illness. I can't truly express the depth of my gratitude toward you all for rallying around me, for supporting me and allowing me to cry when I needed to, and for standing up for me when I needed allies. I couldn't ask for a better group.

I'm thankful that I live in a time and a country where we can afford this illness. I know the approximate cost of my treatments and rehabilitation, and I'm grateful that we'll never need to see or pay that bill. As flawed as our system is, at least they seem to agree that a second chance at life shouldn't come at such a steep cost that you and your family have to seriously consider letting you die. I know how lucky I am to have been born when I was. This disease is more of a nuisance once it's under control now, whereas before it was a drawn-out death sentence.

I'm thankful for doctors and nurses who, despite long hours and countless difficult patients, still genuinely care about their patients. I know we can be difficult to work with sometimes because of pain or frustration, or something along those lines, but we would suffer immensely without the hospital staff. When someone goes above and beyond their job description, it can mean the difference between a good day and bad one.

I'm thankful for modern technology; everything from the medicines that saved my life, to the devices and gadgets that make it possible for me to be independent, to the tablet and keyboard I'm using now to quickly type out and express my thoughts. I think, sometimes, we forget how remarkable a time we're living in. We all have devices in our homes right now that far surpass anything anyone could have dreamed of a century ago, and amazingly we consider them mundane. Terry Pratchett once created a character who, believing that the universe created itself anew every moment, lived his entire life in perpetual mild surprise and wonder at the brand-new world around him. I think, sometimes, we all should take a mental step back and allow ourselves to be surprised and amazed at the world from time to time. I suspect that's how you stop taking things for granted.

I'm thankful for the education I've received, both in and out of school. I don't think it's entirely coincidence that I've been given the gift of being able to express myself, that I was given the opportunity to hone that gift, and that I'm now in a situation that desperately needs to be better understood by the general public. There are still so many problems with how the disabled and the ill are treated, but it's difficult to express why they're problems in the first place when most people can't really empathize simply because they've never been in that situation. I know I've been able to help my friends and family understand, but I feel like I need to find a way to take that out into the world.

Well, I hope all of you have a wonderful and safe Thanksgiving weekend. Remember to go easy on the leftovers tomorrow; there will probably be more than enough to go around, so don't go stuffing yourself two days in a row.

It happened!

I was going to post something about all the various tools I use to get through the day, but that's going to have to wait. Why? Because I walked today!

It was only a handful of little baby steps, but holy shit, are  they a big deal! No, I can't get out of my chair on my own to walk, and I'm nowhere near being able to do it safely away from the safety equipment in the hospital, but I walked!

Now that I've gotten that major announcement out there, it's time for some less exciting news. First, the bad news: my estimated discharge date has been delayed again. This time it's because we're waiting to see if AISH is going to help us out financially or not. I'm also apparently progressing too much, because we've been told that AADL is probably going to refuse to help us out with a power chair because I can get around in my chair using my feet. Yes, that will probably be their reason. No, they probably don't care in the least that my disease makes it so that I tire out really quickly from doing anything physical, which thus makes going long distances in a manual chair impossible for me.

But there's more good news! We should be able to apply for a lighter manual chair from AADL, which will make getting around without power much easier. We're also going to be getting a loaner power chair for about 3 months, which could very well be all I need a power chair for. We've also begun to look at apartments for me, and the one we saw today is a solid candidate. AISH may be willing to cover the rent once we do get an apartment, too, so that will take quite a lot of stress off our shoulders.

Finally, my CK level this week was 981. Not great, but at least it hasn't jumped up.

I cried

Today, I cried. A lot. I know that tapering off prednisone can make a person very irritable and weepy, but I can't put it all down to my medicine.

I cried because I want so badly to go home, but there's no home I can go back to. I cried because this means I'm technically homeless. I cried because I'm going to wake up in the hospital tomorrow, and the next day, and the next, and we don't know when I'm finally going to wake up somewhere else. I cried because the whole process of setting me up in a new place with everything I need is maddeningly slow, and there are few outlets for frustration in the hospital. I cried because I've had to hold back my anger, my frustration, my sorrow for nearly half a year just so that I don't snap at nurses or loved ones. I cried because there are millions of other people in similarly shitty situations, and that breaks my heart.

I cried because I am constantly fighting a thousand small battles with my health and my situation, and there is no one here who can really understand what that's like. I don't need someone to cheer me up when I cry; I need someone who will just let me cry. I cry because there is so much outside of my control that I still have to try to fight against. My body is still at war with itself, and I have to fight the urge to blame myself when my CK levels rise. I have to remind myself that it's not my fault that I've gotten sick while in the hospital, that my body is doing the best it can with a compromised immune system to protect me. I have to tell myself that it's not my fault my body is like this, and that it's not broken. There is nothing "wrong" with me; I'm just ill, and might be ill for the rest of my life.

For those of you who can visit me, please don't worry about these feelings. They are just feelings, and all feelings come and go like the wind. Sometimes I'm sad, and sometimes I'm happy. Going through different emotions, even the ones we don't like, is just part of being human; I am a human going through a stressful situation, so it's only natural that I'm going to be frustrated and a bit depressed sometimes. Everything is going to be okay, and I have proof of that.

My CK rose to 1000 again last week, but it's back to 917 as of yesterday. I've also found out that I am going to be given a loaner power chair that I'll be able to take with me when I get discharged; we just have to wait for it to be repaired and delivered, then we pay a flat fee of $120 to borrow it. We've also begun looking for an apartment so that I won't be homeless for much longer, and it turns out that there are quite a few options for wheelchair users in this city. As my strength and abilities come back, even more options will open up. I don't expect to be able to handle stairs anytime soon, but being able to stand and take a few steps will make a world of difference. Until then, there are still skills I can learn and perfect, and I can expand my range of motion with simple stretches every day.

I have absolute faith that everything will fall into place, and that I am, despite my frustration, where I need to be in my life right now.

Firsts

Everyone remembers their important firsts: their first crush, their first awkward kiss (please tell me it was kind of awkward for everyone; I don't want to be alone in this!), their first car, their first home they could really call their own. They're milestones in our lives, cultural markers of "before" and "after." You can never really go back to where you were once you've passed such a milestone. I've passed several of the shared social milestones myself, as well as a few only members of the disabled community share.

My first time sitting in a chair of any sort after being hospitalized was an emotional event I got to share with my mother. It was only a Broda transport chair with no means of self-propelling, and I wasn't sitting up straighgt, but I still cried from sheer joy. I was in a chair! After so many weeks of being confined to a bed, I was sitting! I could finally be permitted to see things that weren't directly in front of or beside the bed! Because that chair had wheels, I got to experience another first soon after the thrill of sitting up: going outside.

I remember it being a sunny day, warm but not hot. There was a bit of a breeze, just strong enough to play with a person's hair and rustle the lush leaves of the trees shading the sidewalks. When the automatic doors of the hospital slid back, the fresh air hit me like the first breath of life itself. It brought with all kinds of new smells that had been lost to me inside the building: fresh grass, trees, car exhaust, even a little rain from the night before. I could hear sparrows chirping in the trees in the courtyard, singing their songs to each other as they for magpies and dropped tidbits. Pieces of conversation kept drifting in and out of my range of hearing, their tone drastically different from the ones I often overheard inside: people were laughing, catching up, just visiting out here. In some cases, it was only a medical bracelet that gave away someone's status as a patient.

Mom wheeled me to a shady spot under a tree while I was taking in everything and gave me a frozen lemonade. Sitting there with my mother and my cold drink, feeling the elements on my skin, watching the people and the birds around us...sure, I still looked like hell, and my myopathy was still raging inside me even as my body knitted itself back together, but that moment felt like heaven.

My first bath in the hospital was an unexpected surprise. I'd mentioned that my hands were starting to smell weird from only being washed with hand sanitizer, and one of the nursing attendants (hereafter referred to as NA's) asked if I'd had a bath there. When I said "No," she immediately scheduled me for one the next day. I was taken right after breakfast; the mechanism they used to take me to the bath room was like a giant, white and blue forklift that picks up the patient and lowers them into the tub. Feeling that warm water closing over me, feeling my hair and skin finally being properly cleansed and scrubbed after two weeks of sponge baths...heaven again.

My first time sitting on the edge of the bed scared my physiotherapists a little. My back was still so stiff that I couldn't stay up on my own  (as in, I couldn't sit at 90 degrees, so I'd just fall backwards), so one of them sat behind me while the other pulled me forward. I cried. Not from the pain of having my back and hips stretched; that kind of pain doesn't make me cry. No, these were tears of joy again. I was sitting! Not particularly well, but damn it, those were my feet on the floor! My therapists thought they were hurting me, but I assured them that I was fine and wanted to stay up.

Today, I experienced another first: standing on my own two feet after almost half a year of either sitting or laying down. I still need help to achieve this Herculean feat, but we did it despite my legs' screaming protests. They hadn't had to support any real weight in months, so I can forgive them for atrophying a bit. We managed, despite my weak muscles, to get me standing for 20 seconds. It may not seem like much, but that's the first 20 seconds of the next phase of my rehabilitation. Next thing we know, I'll be standing up completely on my own, and nothing on the top shelf will be safe from me anymore.

I feel I should end this particular post with a very brief summary of some of the things I'll be covering very soon: how I've been in and out of the ER because my immune system sucks, how our game plan has changed because I got too well, how important patient advocacy is, where we're at in terms of geting me the wheelchairs I need, what the housing situationg is, and more things I've learned as a person with a disability. Oh, and we're getting close to remission: my last two CK counts were 600 and 1000. It's gone up and down before, and an intense workout can raise your CK by 400 even when you're healthy, so we're not too worried about that little rise.

Round and Round We Go!

Yesterday evening, I got some fantastic news. That rituximab treatment I got? It's definitely kicking in! My CK level was about 1710 yesterday -- the lowest it's been in months, and down enough that I have every reason to hope that I might just enter medical remission by the end of the month!

What I find interesting is that this wonderful turn of events coincides with a certain card that came up during my last tarot reading. Yes, I do read tarot. No, I don't think the cards are infallible or 100% accurate; I see them more as a potential source of insight. They give you something to think about and maybe a heads up; nothing more. I've been doing some monthly readings for myself while I've been in the hospital just for the practice. The card I'd pulled for this week? The Wheel of Fortune.

From the Zombie Tarot deck, a personal favorite of mine

The Wheel of Fortune suggests major change that can't really be resisted. Alternatively, it reminds us that the universe has a funny way of working in cycles; what's going on now won't last forever, and what's happened before is going to come around again. In my case, I'd say that having the rituximab kick finally work is one heck of a major change. Once my CK drops down to normal, it's going to mean that my muscles are no longer being damaged, and can just heal at a far faster rate.

I'm crossing my fingers, guys. I might just be able to walk up the steps home in time for Christmas after all!

I've got a few major updates for all of you.

First of all, we've made a plan. I'm still probably going to be discharged on September 2nd, but I won't be going home right away. Going home might not happen for several months yet. Rather, my social worker is looking for a place for me in a long-term care facility as a short-term housing solution. Yes, I'm going to be housed with elderly patients for a while, but that's just because the facility will be wheelchair-accessible, have any and all equipment I might need to attend to my daily needs, and there will be trained staff on hand should I need them. I just need somewhere safe to stay while my body heals, and this is the best solution for now. We'll be continuing therapy while I'm in the long-term care facility, and I may become an inpatient in the rehabilitation hospital again if my rate of progress really takes off.

Second, I've begun trying out a power chair, and I'm loving it! I came in with the misconception that power chairs are just for people in really bad shape, like quadriplegics. Thankfully, my healthcare team smartened me up about that one by pointing out that using a power chair at least part of the time will grant me more independence: I can go to more distant places by myself, I can get everywhere much faster than in a manual chair, I can conquer more obstacles because the chair does all the work, and it will make snow a much smaller issue in the winter if I still need chair by then. I'll still have a manual chair as a backup in case the power chair needs maintenance or charging, plus I can scoot around in small spaces just fine with a manual chair without tiring myself right out.

Finally, my CK levels are down again! The last test came back as 3140 -- down from 5400! I'm hoping that this means that the rituximab is finally kicking in, rather than last week's test result just being a lab error or something of the like. You see, rituximab is a funny drug. It works miracles for some people, and doesn't work at all for others; when it does work, it can take two weeks to several months to do its job. If it does work for me, then it should bring my CK levels down to normal. That will mean that there will no longer be any ongoing damage done to my muscles. I'll start bouncing back much more quickly because my rate of healing won't have to outpace any sort of damage.

This has been a quick, but important update. Hopefully I'll have access to the computer again tomorrow or the day after so I can get to one of the essays I have in mind.

Taper

This, my friends, is a tapir:

Why is there a tapir? Because the name happens to look like "taper," and this lil' guy's expression just happens to perfectly capture how I'm feeling today.

We've started tapering my prednisone dosage from 100 mg a day to 90. Considering that weaning off prednisone is known to cause serious mood swings and irritability, I'm guessing my mood today has been caused, at least in part, from my body saying "yes" to drugs. But of course, that's not the only reason I wish I could get a do-over on today. Oh no.

My damn CK level spiked. Again. It'd been hovering around 3000-3500 for weeks, but the blood test on Tuesday revealed that it shot back up to 5400. It could be just a fluctuation, it could be that the medication isn't working as well, it could be that my inflammation is accelerating along with damage to my muscles, or maybe I've been misdiagnosed. Not every auto-immune disease has been named yet, after all, and polymyositis is already an officially labelled "rare disease." All we can do is just sit and wait to see if the rituximab finally kicks in, or try yet another prescription to see if that does the trick. And you know what's going to be going through my mind the entire time? "What if I'm one of the unlucky few who still dies from this?" Again, that's possible: myositis diseases can cripple all of your muscles, including the ones you need to breathe and keep your heart beating.

On a rational level, I know the odds of it getting that bad are virtually nil by now, but since when has fear been a rational beast? Oh no, that son of a bitch has latched onto my gut and won't let me shake the thought that maybe we can't, or won't, get this disease really and truly under control in time to save me from it.

To top that off, I had a wheelchair skills assessment today. Being put through my paces like that just made me feel weak and helpless. My arms are still weak enough that you can seriously trap me in a room with a two-inch high barrier. I know I'm going to get stronger, but it's incredibly frustrating to have what you can't do pointed out to you.

We've also made the decision to move me to a long term care facility. It's only temporary, thankfully, because I just need somewhere safe and accessible to stay until my disease settles down enough for me to make some major progress. However, the rules here say that once that decision has been made, then therapy has to stop. We've been assured that they'll at least do maintenance therapy with me (ie: stretching me every day so I don't lose what range of motion I've gotten back), but that's all. My doctor is going to advocate for me to continue receiving therapy while I'm waiting for placement, though, because I actually am a special case. I'm going to get better; we're just waiting for my body to get through this tough phase. What worries me is that the wheelchair trials may be stopped, too, and I don't own or rent a chair. Insurance or ADL will help us with that, but I'm a bit worried that I might wind up stuck between chairs.

Bedridden. Again. Getting weaker and weaker with every day from lack of exercise, and all because one place couldn't lend me some wheels while we wait for a set to be made/become available, or simply because paperwork takes a long time to process.

Argh. Okay. Okay. I gotta get my mind off this. Gotta try not to dwell on the negative for the entire day. Okay. How about some positives instead?

We've been practicing sliding board transitions for a couple of weeks, and today's was definitely a bit easier. This means that I'm that much closer to not needing a mechanical lift to get in and out of bed, and that much closer to not needing help to get out of bed/my chair. I can also lean forward enough to rest my elbows on the table, so eating just became a lot tidier for me. If I drop something now, it goes on the table rather than my shirt.

My trial power chair also came in today, and I'm not bad at driving it. I'm still not allowed to take it around on my own just yet, but that should happen soon. Once I'm allowed to take it outside on my own, then I'll be able to just take off on short trips outside when I'm bored. I never thought I'd look forward to using a power chair, but after trying (and failing) to get up a ramp? Oh yeah. Give me a motor, baby.

Small steps

Well, this blog's title just became quite literal.

Today, being a Saturday and thus part of the weekend, I got a day off from my therapy sessions. The idea is that patients need a break from the often intense workouts we get during the week. Did I rest? Heck, no! I see days off as chances to just experiment and see what I can do. Now, small things like bending at the waist on my own and lifting my legs against gravity have been major obstacles for me since I've been sick. This is because polymiositis affects the proximal muscles first, and thus affects them the most extensively. I'd also spent the better part of a month lying in a bed, which will make anyone at least a bit stiff in the back. 

Proximal Muscles (image shamelessly borrowed from mda.org

Well, because of that, my back had been so stiff for a while that my abdominal muscles were just too weak to bend me, and even other people struggled to help me do things like sit up and lean forward. Well, you know what? Thanks to being stretched every day and my body healing up, I can now lean forward in my wheelchair far enough to do things like unlock my foot rests and get my hands about halfway down my calves. This means that I'm that much closer to regaining the ability to do things like get my own shoes on and off!



As an added bonus, my legs have finally become strong enough for me to take very real, but small, steps while in the chair. I've been able to kick my legs out just fine for several weeks, but this is lifting them against gravity, stretching them to put a foot out, then pulling myself and my chair forward. This is how I'm starting to walk again. This is how I'm going to take my life back and beat this disease. Even if it looks a little funny to watch someone taking teeny tiny steps while in a wheelchair.

Wheelchairs and Energy Levels

This was me yesterday:

Y'see, myositis disorders tend to restrict how much energy you have. My attitude of "go hard or go home" when it comes to physiotherapy sometimes gets me into trouble because of this. If I push myself too hard one day, I'm going to feel tired and weak for the entire next day, and possibly even the one after that. Getting up? Didn't want to do that. Exercise? Didn't want to do that, but I still did for my own good. Assembling my thoughts into coherent sentences for the purpose of blogging? Forget about it. I do try to limit myself a bit so that I have enough energy to do things like go for a stroll or visit after my therapy sessions are done, but sometimes I misjudge. When that happens, I burn right out and can't summon the energy to do much of anything.

Mind you, I'm sure staying up until 2 a.m. Monday night reading didn't help.

Oh, and it was all one book. Just one very long and very fascinating reading session, and holy crap you guys need to read this book.

This is Susannah Cahalan's memoir about her experience with anti-NMDA receptor encephalitis, a very rare auto-immune disorder that attacks the brain. While I can personally relate to some of what she went through, her account is jaw-dropping. The poor woman lost her mind for a month due to the disease, and struggled to regain not only her health but her very identity as the treatment began to take effect. The way her family stuck by her, and stuck up for her, made me want very much to give my own a hug.

Seriously. Everyone who's made it out to see me? You guys have made my stay in the hospital much more pleasant than it would be otherwise. Without you, every day would just slog into the next, with no meaningful division between them other than sleep. I'd probably be a lot more listless without you, and nowhere near as far along the road to recovery as I am now. Thank you.

In other news, I finally found a dud in my wheelchair trials today. This supposedly lighter chair was supposed to be easier to propel and maneuver, but the darn thing was just as heavy, didn't want to turn, and the wheels were so far back I couldn't reach them properly. Thankfully, my Occupational Therapist found my old chair and swapped me back into it. I still hate how stiff the brakes are on here, but at least I can move around again. Ah well...that's what these trials are for, right? It's just like buying a car: you have to try a bunch to see what works and what doesn't for you. Except that here, the car won't even start if it's wrong for you.

You have what now?

Alright. Let's do this. As my friends and family know, I've been in one hospital or another since May. I know a lot of you have a lot of questions about what I've got and how I'm doing, so I'm starting this blog to help keep everyone in the loop about my progress. Since it's my blog, I'm also going to be sharing a few of my own thoughts about what's going on. Be warned. I may get a little raw from time to time.

To answer the big question: I have a fun and rare little auto-immune disease called "polymiositis" (sometimes spelled polymyositis. I don't know why it has two spellings, either.) What it means is that for whatever reason, my immune system decided to attack my skeletal muscles. As in, the muscles you need to do things like move and breathe. Oh, and there's no way to prevent or predict any auto-immune disease; they can be triggered by something as harmless as a cold or just crappy genetics. They're also often difficult to diagnose, and tend to just get progressively worse without treatment. Yeah. Now how comfortable do you feel shaking the hand of that guy who you just know didn't wash his hand after he sneezed into it?

As far as I can tell, this whole mess probably started in late March. Both my knees started to ache. I'm not deluded, I know I'm quite overweight; so, I didn't think too much of it. Achy knees come and go when you're heavy, and besides, I'd spent most of the previous night on a friend's carpet either kneeling or sitting since he didn't have any chairs for our little get-together. That's pretty hard on anyone, really. I'd also just started on an anti-depressant called Celexa to help deal with my worsening anxiety attacks and oncoming depressive episode. The side effects for that drug just so happen to include pain, so I figured it had to be the Celexa when the knee pain didn't go away after a couple of days. Still no big deal, right? I just took some Tylenol and mentioned the side effects I was having to my doctor the next time I saw her.

Well, the pain not only started to get worse, but it began to spread into my upper legs and my knees started to get a bit stiff. I thought it was still just a side-effect of the Celexa, so my doctor switched me to another prescription in the same family of drugs. It made no difference. I was starting to have trouble with stairs. Not serious trouble, but it was taking more of an effort to get up them, and I was tiring out faster. My legs were starting to become really riddled with pain, too; bending my knees for any reason, whether to lift them onto a stair or just to sit down, began to feel like I was tearing the muscle in half.

I managed to finish my school semester, but handing in my final project was an ordeal. I managed to drive myself there. Driving was fine. Getting out of the car? A little painful, but not too bad. Tracking down my teacher? Exhausting and painful. I had to go up and down several floors several times to try to find him because everyone I asked knew he was in the building somewhere, and they'd tell me the last place they'd seen him. By the time I dropped off the project, my legs were so exhausted I felt like I might collapse right then and there. Luckily, I managed to limp back to the car and drive home safely.

Enter May, easily one of the very worst months to strike my household. We were starting to get a little worried about my chronic pain at this point, and my doctor was beginning to send me out for blood tests and the like since it was obviously not the Celexa. My legs just got weaker and weaker, and my shoulders began to go the same route as well. I lost the ability to get up the stairs safely on my own. I got stuck in chairs. I got stuck in a public toilet. I got stuck on the couch. For a while, I had to plan my bathroom breaks very carefully because I couldn't get out of a chair or off the couch until someone else was home. Dad bought me a power lift chair so that I could at least get up on my own; Mom bought me various implements to make basic tasks like picking things up easier. Both of them helped me up the stairs to bed every night, offering a hand to steady me at first, but having to pull me up one step at a time as the disease got worse.

We tried everything we could to halt the progression of it: eating healthier, getting light exercise, stretching. The last two seemed to help for a bit, but the next day I was always a little worse. A little weaker. In a little more pain. My doctor was doing everything she could, too, including booking an appointment with a rheumatologist for June 10. She'd never seen anything quite like this, especially not in someone my age. A twenty-something shouldn't be struggling to walk or stand up, and they sure as hell shouldn't be completely incapacitated when they trip and fall. And that did happen. Unless you've been in a situation where you've fallen and been completely helpless to even get yourself on to your knees, you really have no idea how terrifying that is. It just hammers home how bad things have really gotten, how helpless you really are.

I'll never not be grateful to my parents and my fiance for helping me out during this incredibly stressful time. By the end of May, I had gotten so weak that I could no longer dress myself, get out of bed, or get off the toilet by myself. I was becoming quite depressed and anxious as well; I'd lost my independence. I felt robbed, even cheated, and we didn't know what was doing it. I could see the fear and stress taking its toll on my loved ones, and that just fed into it. I became angry even as I began to resent myself. I saw myself as becoming an unfair burden on them, forcing them to strain themselves and worry. I felt like maybe I just wasn't trying hard enough, like maybe this was somehow my fault for not walking just that one extra lap around the main floor, for not trying just one more time to stand up. My anxiety, which normally just makes me feel uneasy, got worse: I was hyperventilating for several minutes during an attack.

On May 24 around 11 pm, I fell backwards while attempting a practice step and hit my head. Thankfully, there was a rail nearby that I'd grabbed, so it was a very slow fall, but it was a fall nonetheless. Dad and some family friends were home, so they immediately tried to help me up. My back and hips had become so stiff by then they literally couldn't sit me up properly, and I was far too weak to stand up from the floor. So, they laid me down and called Mom at work to let her know what had happened. When Mom got home at 11;30, she took one look at me flat on the floor and called an ambulance.

It took 7 hours of waiting and tests (including a spinal tap; that's a post for another time), but I was finally admitted into the ER. That's where they discovered that not only was my Creatinine Kinase level astronomically high (a normal level is between 0-400. Mine was 12 000), but there was so much crap in my blood that my kidneys were at serious risk of shutting down from trying to filter it! My urine even turned a solid pink, looking more like Pepto Bismol than pee. The hospital immediately began flushing my system with saline, which thankfully saved my kidneys. They also began, to my understanding, sending out my case to every other hospital in the hopes that someone would recognize the symptoms. Thank the gods, someone did: a neurologist at another, larger hospital. I was given IVIG at this point in an effort to bring down my CK levels, and quickly transferred to the neurologist's hospital.

I was subjected to multiple tests here, too, from CT scans to a muscle biopsy. Yes, I will talk about every one of those later. Within about a week, they had their diagnosis: polymiositis. I'd never even heard of it, and neither had most of the nurses and nursing attendents on the unit. It scared me, a little. I went from healthy to suddenly having an auto-immune disease that I'd probably have to deal with for the rest of my life. The damn thing had actually almost killed me by clogging my kidneys with my own loose muscle fibers. I still feel like I'd been pulled back from the brink. But things began improving from then on. With the IVIG, my energy levels began to return to normal. When we started on some prednisone, the pain in my muscles disappeared and my strength began to return.

We started seeing small improvements every day: the colour in my face returned, my voice became stronger, I could lift my arms off the bed again, I could raise my knees a little higher. I still couldn't walk or stand, but I was getting better. My neurologist, soon accompanied by a rheumatologist who had experience with this disease, was extremely optimistic with my prognosis. I was going to get better. I was going to be able to pick up my life where I left off. As my condition improved, I was transferred to a rehabilitation hospital to really begin my much-needed physio therapy.

I'm still here now. I'm still seeing small improvements, small victories every single day. Something is always getting easier, or something comes back. I'm still wheelchair-bound, but that chair gets easier to use all the time. I still have bad days, of course, but the good far outnumber the bad. And I know they're going to keep outnumbering the bad; this, as well as all the love and support from everyone around me, is going to keep me going through the next year. We don't know when I'm going to be able to stand or walk again; it could start to happen in a month, it could take a few years. But you know what? That's not that bad. I'm going to be able to walk again, and it's going to be relatively soon. I'm really damn lucky that polymiositis attacks the muscles, because muscles can grow back and you can strengthen it. There is a chance that I won't get it all back, but it will come back.

Until then, I'm going to take this one small step at a time, and I'm going to cherish every little victory along the way.