Today I’m sharing a guest post from a new blog friend of mine. I’ve followed A Boy, A Girl and the Marine Corps for a long while and I always enjoy her snarky posts and honesty. When I learned of her recent diagnosis with a rare form of arthritis I asked if she would share a bit of her story on my blog. I hope that her honest post will help you see that RA, JA, heck any form of autoimmune arthritis is VERY serious. It hurts…often all.the.time.
I’m 30, I Have Arthritis, and sometimes that is really hard to deal with.
I’ve always been an athletic active person. I played tons of sports growing up, I ran the Tough Mudder, I generally can’t sit still, which adds up to me being an active person. I have had a lot of weird and unexplained health issues in my life. Who knows how many of them are related to my autoimmune arthritis? Could be all or none.
But a year ago, I was seen multiple times over three or four months for extreme exhaustion. This is not something I had ever coped with. I don’t nap. I’m just not a napper. But for some reason, I was constantly falling asleep. I was sent to a specialist and told it was possibly narcolepsy. FREAKING NARCOPLEPSY. I laughed at the absurdity of it all and thought, “Only me.” But before I could get my sleep study done, I was faced with a new and worse challenge.
Just a few months after being told I probably had narcolepsy, I was hospitalized, covered in lesions and hives, joints filled with fluid, pain like I’d never known (which is saying something from a girl who has broken nearly every bone possible and had just had wrist surgery), and facing an unknown adversary. It became apparent that it was quite likely that the extreme and chronic fatigue was actually the first symptom of an autoimmune disorder waiting in the shadows for a moment to pounce.
In January of this year, it was decided I had what is known as Seronegative Arthritis. An uncommon form of arthritis not usually seen in 30 year old women. While Rheumatoid Arthritis is commonly seen in women and often younger women, Seronegative Arthritis is commonly in men, and is not usually bilateral. Me? Of course, I have it in both ankles, knees, wrists and hands. It is asymmetrical, affecting my left leg more than right and right hand more than left, but that is about the only thing even a little bit close to textbook that I exhibit (and it’s not that close).
And you know what? It sucks. That’s just the beans of it folks. I’m 30, I’ve been house bound since November of last year, I’m lonely, I’m painful, I’m gaining weight from the medications and inactivity, and life is hard every day.
Each morning I wake up and I don’t know until I move if today is a good day or bad. Sometimes it’s both. Sometimes it starts out one way and ends another. Sometimes it’s a string of bad days 10 days long. Sometimes I tense at the idea of just getting out of bed. Sometimes, I cry because I need to shower, but the idea of trying to sit down on my stool is so horrible that I can’t.
I am a pretty optimistic person. I generally try to look on the bright side of life. But one thing I have noticed is how few people understand my daily life. Yes, I joke about being a hermit and how my situation has indulged that. Yeah, I think it’s funny to say that I got what I wanted and hate people anyway. But the reality is so much more than a silver lining look at life.
The truth is I am ALWAYS in pain. Just some days are less painful than others. I have a daily debate on what I need to do and what I can put off. Showering every day is out of the question. Some days, going to the bathroom is about as active as I can get because even that simple act is excruciatingly painful. Have you ever thought about how much pressure you have to put on your knees and ankles to sit on a toilet, let alone stand back up? Some days, it’s all I can do to roll over in bed. Most days, I have to pick a position to sleep in and stick with it no matter what.
I can’t put socks on regularly yet. So I wear the same ones for a few days. Gross? Maybe, but I can’t always bend enough to reach my feet. This isn’t glamorous. This isn’t me lounging in bed in comfy pajamas, snacking on cakes and cookies and watching trash TV and loving it.
This is my life and it’s a daily struggle to do normal things. I can’t go up and down stairs. I can barely dress myself. I couldn’t blow dry my hair even if I felt confident enough to go out in public otherwise. I have a hard time putting on pants, let alone socks. I have days that I can’t even sit upright in bed because of the pain.
I’m only thirty years old. I have autoimmune arthritis. I take medications that make me sick to my stomach, but make the pain more bearable so it’s a trade off. I can hardly care for myself. And it sucks. And sometimes, it’s hard to deal with.
A Girl is a self proclaimed semi-professional blogger who began blogging in 2008 as a means of coping with a deployment. She is married to an 11 year veteran of the USMC Reserves, whom she met shortly after he returned from a deployment. She was recently diagnoses with a rare form of arthritis after waking up suddenly unable to walk. Her blog is a snarky collection of her thoughts on life as a military spouse, life as a young person with arthritis, and life in general.