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.