Dearest readers of this blog, thanks for coming by. It's been quiet around here because I haven't made anything in 23 days. I hate it.
I've been asleep. Not in a coma or anything, but my body has decided it needs to go on hiatus for some unknown reason. So, since I don't have anything sewing related to write about, I figured in honor of February 14, National Donor Day (I bet you thought I was going to say Valentine's Day...sucker!), I'd write about what it's like to be me.
I have several conditions that cause my immune system to attack me. Where a normal immune system is ready and waiting to pounce on nasty bad things, like bacteria and viruses, mine is confused and attacks the good things...like organs, which is generally not a good situation. I have a liver that sometimes doesn't do its job, arthritis that scored me a handicapped parking placard, and don't get me started on my colon. I'm a human pincushion, my record for missed sticks in one sitting is 9 (and for the uninitiated, that's 9 tries with a needle to find a vein). I've had cameras everywhere, and I mean everywhere. And not like I had a colonoscopy once...I've had 18, so for those that whine about oh no it's so horrible I can't fathom it, shut up, put on your big girl (or boy) pants, and deal.
I saw a t-shirt once that said something to the effect of "Autoimmune disease: because the only thing tough enough to kick my ass is ME." And I thought, yeah. That sums it up!
So, because my immune system is such an overachiever, we had to turn it off. It was like, hey, buddy, I know you're trying really hard, but you need to simmer a bit. Cool out in the corner there.
What many people don't know is that this course of treatment brings with it a whole new set of problems. A suppressed immune system means no soldiers to fight off your cooties. Someone sneezes a mile away, and I get a cold. I get on a plane, I come home with swine flu (thanks, Orlando!). So, I am isolated much of the time. I live in my bubble. I am very fortunate to be able to work from home, so that keeps me protected from cooties. Whatever you've got, I'll get it. Think about that next time you aren't feeling well. You don't know who is immunocompromised - so please, don't get on that plane. Don't go to the grocery store, just stay home and keep your cooties to yourself.
It's hard for people to really wrap their heads around this. I may joke about it, but it's actually very serious. I remember years back, there was a shortage of flu shots and the only people who could get them were the elderly, infants and those with compromised immune systems (me). I remember waiting in line, the only one who was not a card-carrying member of AARP, to get a shot. This little bitty looked at me and informed me the only the elderly could get the shot. I informed her I was probably going to die before she does. Look, I was on a high dose of steroids at the time, which had the lovely effect of suppressing my internal filter that prevents me from saying all the jackass things in my head that I know not to say out loud, so cut me some slack. But I digress...
Where was I? Oh the seriousness. Right. Well, it is. No defense system makes me vulnerable to attack. So when I get sick, I take sick to a whole new level. A freakin cold puts me down for a minimum of 5 days. I remember way back when, my younger years where a cold sucked, but I could power through it. Not anymore. No way. My body is like, cold? Yeah we're gonna go ahead and power down until it passes, see you next week. It sucks. And that's not even the real underlying issue...it's a side effect of the treatment!
So, when I suddenly got unbelievably tired last month, I thought here we go, braced myself for sniffles, coughing, fevers, sore throat, the works. And nothing. After a few days, I saw the doctor because clearly something was wrong, but it wasn't manifesting in the usual ways of a virus or infection. After a week of this nonsense, it was time to get serious and start looking deeper, so I won myself a 4-day stay at Club Med. And not the fun kind of club med, somewhere in Mexico on a beach with drinks sporting umbrellas. Hospital version of Club Med is a lot less fun. Spinal taps, MRIs, EKGs, IVs, the works. Not brushing my hair for 4 days? Hashtag awesome. Although, I will admit that 4 days of hospital hair made for some decent fake dreads...
The hospital decided I wasn't going to die immediately (they actually said something to the effect of "we've ruled out most of the things that could kill you"), and let me go home. Believe this, there is no worse place to sleep than in a hospital.
So, I'm home. Sleeping most of the day every day. Too tired/drowsy/fatigued to do anything. More tests, trying to figure out what is causing this. I've decided to do my part...I've begun watching the entire House series on Netflix to get myself a differential diagnosis from one of the best. Season 1 pilot explores a kindergarten teacher who, like me, is also allergic to gadolinium (MRI contrast) and finds out the hard way (though I did not need a surgical airway to resolve my allergic reaction when it presented itself). Turns out, she had a tapeworm in her brain. My brain is functioning fine, so that's not it. On to the next episode...
Going back to where I started: this post being in honor of National Donor Day. I'm a member of a group for people with the same rare liver disease that I have, and too often, I read posts of others who are in pain, waiting to be at the top of the transplant list. And nothing is more disheartening than when you see a post from someone who never gets the call and loses their battle. Even more disheartening is when they get the call, you see the post that they're heading in for surgery, and they don't make it out. What is very heartening (is that a word?) is the success stories of those that do get a donor - living or deceased - and go on to live a healthy, productive life. I only see the stories of those with my disease, but there are so many people out there who are waiting for organs...so if you aren't an organ donor, please consider it. It's hard to come to terms with your own mortality, but it's gonna happen to all of us. But when it does happen, you can give the greatest gift of all: life.