Life These Days

I don't even know where to start with this post. I've been meaning to write an update. For those of you who follow this blog for journaling tips and inspiration, I hope you aren't too disappointed by the detour of late.

For those who have been wanting to know more about what's happening with my health, stick around.

I am feeling the same -- swollen, ill, flushed, my joints are stiff and cranky, my back hurts, my hips don't always work when I stand up and try to walk. I'm very, very tired.

I saw the doctor again this week, and she started me on thyroid medication and prescription vitamins with iron. I am hoping that treating my thyroid problem and anemia will perk me up some. But that's not looking like all of the problem.

The doctor thinks I have something called Ankylosing Spondylitis. You might not know how to even pronounce that, let alone know what it is. I have been saying those words since I was a little girl, and that's because my dad has it. Ankylosing Spondylitis (AS) is a chronic inflammatory disease that effects the joints, normally large ones such as spine, neck, shoulders, hips, and knees, and can effect many other parts of the body. It is an autoimmune condition, which basically means that the body thinks there's a foreign invader of some kind, and has sounded the alarm and sent out troops to attack and conquer the threat. The problem is, my body is attacking itself.

AS can be hereditary. I had some hip trouble in my teenage years, and throughout the years have had back pain here and there. During my younger daughter's pregnancy I had severe joint pain and had a lot of difficulty walking, dressing, climbing stairs, etc... In the last year or so, I began to have stiffness in my low back some mornings. I remember saying on my Facebook status one day that I needed WD-40 for my joints. A couple of people laughed, and a couple of {older than me} ladies said that I was too young for that. Ankylosing Spondylitis often begins in a person's early twenties, sometimes even in the teen years, but is almost always diagnosed before age 35. My dad was diagnosed just about the same age I am now.

I really began to be concerned last fall when I experienced my first "flare" of autoimmune symptoms. I had low grade fever, my low back was quite stiff and sore, I had pain in other joints, and weird puffiness that I had never experienced. I was, like now, very very tired.

Skip to now. This flare began in May and has not ended. I finally went and saw a doctor, had a physical exam, went over my history and my family history, and had labwork. There is a specific gene that is strongly associated with AS (90% of people with AS test positive for it). My test came back positive.

Given my symptoms, family history, and positive test result, it is quite likely that I have Ankylosing Spondylitis.

The rheumatologist I was scheduled to see could not get me in until late September. That felt so long from now. When I saw the doctor this week, she suggested she see if she could get me in to another rheumatologist sooner. She was able to do that, and now I will be seeing my new doctor late THIS month. I am relieved I don't have to wait so long now.

I asked the doctor this week if she thought I had Ankylosing Spondylitis, after she came into the exam room and spoke of little else. She looked at me and said, "I'd say it's pretty certain, dear."

So while I have not been diagnosed yet, I am prepared that that's what my diagnosis will be.

I am trying to learn how to adjust my life to include this condition. I have had to start resting in the late afternoons as much as I can, otherwise my back begins to throw a fit. The girls and I have started a new little ritual of climbing into the comfort of the couch together, with a heating pad behind my back, for at least an hour. Sometimes I read them stories, sometimes we watch a movie, sometimes I have to close my eyes for a while.

Mostly, I'm ok. But life is different already. I don't have any days that I feel "fine." I never know when I wake up what combination of symptoms will greet me. Today my mid-back was stiff for about an hour, and later my neck was stiff. I had a temp of 99.1 and felt flushed. As the day progressed so did my low back pain, and after a 20 minute drive down the coast, when I tried to get out of the car, I discovered that one of my hips had stiffened and didn't want to bend properly or support me. That's just today. Tomorrow it will likely look a little different.

I want to have a positive attitude that inspires people and doesn't weigh them down. I don't want the girls to only remember me ill and in pain. I don't want to have to slow my pace so that I can accomodate this foreign invader into my life.

Every day I try to be thankful that I can do everything I can do. I try to look for the hidden gifts. Things like cuddling little girls whose hair smells like coconut. Things like being given 20 kisses in rapid succession by my 3 year-old because she wants me to feel better.

And that's where I'm at right now... slowing down, being reintroduced to daily pain after thinking that chapter of my life was over, reframing my reality.