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
Friday, 24 October 2014
Sunday, 12 October 2014
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.
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.
Tuesday, 7 October 2014
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.
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.
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