Wowza. You people know how to alliterate.
I was hoping to have a couple of ‘a’ ideas to choose from, but I never expected the comments last Monday to be so entertaining! I have to admit I originally intended to choose the most fun and wacky topic suggestion, but then a few of you commented about wanting to know more about my illness [Ankylosing Spondylitis] and things associated with the disease.
A couple of you asked straight up:
* Any new research, medications, etc for Ankylosing Spondylitis? Well, it does start with an "A"
* I second the idea to talk about your illness and research, etc. related to that topic for "A". I know it would help us all understand your day to day struggles.
Another asked about the emotional side:
* "attitude" I would like to talk to you about how you keep such a good attitude. Is it something you just are or do you work at being positive? And how do you achieve it each day, moment etc. And do you ever find yourself in the dark place of a bad attitude?
And one of you pulled out some rheumatic alliteration:
* Okay, finally got one...
anticlimactic antics in annoying arctic air around associated arthralgias...
It would have been appealing to put all artistically articulated alliteration attempts one-after-another in the post and leave it at that, but I figured it would be cheating a bit if I let you guys do all the work for me!
As it turns out, you’re asking about my disease during a week where it’s making life even more difficult than usual. I’ve been half-tempted to take the week off, but I decided instead we may as well just attack it head-on, right? The next few days will be posts answering some of the questions/topics you have asked about this illness, and since I know I’ve gained a lot more readers since my one post explaining the disease a year ago, I thought I’d take today to explain the basics.
I have a disease. It sucks.
Ok, maybe that was a little too basic. ;) Let’s try that again.
My disease is called Ankylosing Spondylitis. It’s a genetic, systemic, autoimmune disease… which means it’s hereditary, it can affect pretty much any system in my body and it all stems from my own immune system attacking me.
The way I explain it to kids is that when they have a cold, their body sends little Pac-Man cells to eat up all the bad germs so they can feel better again. My body gets confused and can’t tell the difference between the bad germs and the rest of my body, so the Pac-Man cells just attack everything. And that ends up making me feel sick and in pain.
To grown-ups, I simply say my immune system is ignorant. The Pac-Man [also known as the HLA-B27 antibody] started out by attacking the joints in my sacrum [low back], spine and neck. As the joints are attacked, inflammation occurs and scar tissue forms around the joint. The goal of the disease is to keep attacking until that scar tissue forms into bone and fuses the joints together. The process of attacking/fusing is what causes a great deal of pain.
There was a time, not long ago, when doctors believed this was purely a man’s disease, but there is more research now about the affects of the disease in women, and they are discovering that the disease can progress differently in the genders… but the truth is that it’s different for every person. Some people fuse quickly, and after fusing the pain burns out with the disease process. Some fuse slowly or not at all, some have many systems affected, some only have certain joints that cause problems. There’s really no rhyme or reason and there is certainly no predicting it.
I’m one of those people who deals with inflammation all throughout my body and systems. I have pain in my joints 24/7, feeling them every moment of the day. Some days certain areas are worse than others, and different joints flare more at any given time. There are days where I can be walking behind George [my walker] without a problem, and the next moment I can’t put pressure on one of my ankles. That may last 10 minutes, that may last 10 days. I honestly never know and never count on anything, just dealing with what comes as it does.
I can have inflammation in my eyes [iritis], inflammation in my lungs, problems with my digestive system, fevers, chills, night sweats, nerve pain, you name it. I have leukopenia, which means my white cell count is low and goes lower when I’m sick, so if you come to my house with a sniffle I could get pneumonia. I take medication so I can eat, breathe, sleep, move, go to the bathroom, deal with pain, migraines and a host of other issues. My lungs have become more of an issue because my ribs don’t expand as much as they used to, which means my air capacity is [at maximum] around 60%.
The other problem having to do with my lungs, which I’m dealing with now, is that allergies are directly connected to the immune system as well. As my disease has progressed I have found myself allergic to almost everything… smells, allergens, cleaners, wool, flowers… and now I’m simply allergic to the air, hence my confinement to my home. No open windows, no going outside, no warm sunshine on a beautiful day.
The pup can’t go outside anymore either, as he carries the air in on his fur and causes reactions for me. It’s definitely an on-going process and I am constantly learning to adapt to each new thing that arises, but I will say that as time has gone on the adapting process gets easier and happens faster. Acceptance comes more naturally with practice.
Now that you have a general idea of the illness, I’ll address the million dollar question: why can’t they fix it?
Well, there are a lot of new medications out there that have made huge differences in people’s lives. Some that have been living with the disease have seen improvements, and patients who are just developing the disease are able to take medications and avoid a lot of issues, or at least have the development slowed down.
I have tried every medication at my disposal, and I am only able to take one medication that has any impact in fighting the disease. The n-saids, which help with inflammation, nearly destroyed my digestive system. I took methotrexate, which is a chemo drug, and withstood migraines three days out of every week for as long as I could, but eventually my rheumatologist pulled me off of it. [Thank God.]
There is a newer class of medications, you’ve probably seen the commercials for them: Enbrel, Humira, Remicade, Orencia. These are fantastic drugs that have made a huge difference for a lot of people. I have allergic reactions to them… the kind where my throat starts to swell shut. So, those are out.
The one medication I take for the disease [other than the pain killers] I can only take in a limited amount before my white counts drop to a level the doctors aren’t comfortable with.
In other words, I’m stuck. And I’ve exhausted every option. And yes, I’ve tried homeopathic things that were worse for me than any drug I’ve ever taken. I spent years fighting, and I will always try what I can in the future, but accepting what is, living with it, embracing it and finding joy in it is the only way I know how to live a productive life. And as much as this disease has taken from me, it’s also given to me and taught me and strengthened me.
But I’ll tell you more about that over the next few days. This post is plenty long enough already. :)
Now, since you’ve made it through all those fun details, I feel it’s my duty to provide you with a photo to leave you smiling for the day:
You just gotta love that ‘hawk.
Alright now, blog peeps… don’t forget that you still have work to do. Next Monday will be brought to you by the letter “B” … and you have to come up with the topic. Now go to the comment section and fire away!