I figured I’d start my new running blog by copying over a post I made about a year ago regarding living with RA:
There’s nothing quite like making an admission to the whole world, but here goes: I’m a mostly active person with rheumatoid arthritis (RA). Some of you know, some of you don’t. I’m a pretty private individual about some things so honestly, it’s a bit hard to post this to the world. You might think it’s not a big deal or that I’m looking for a sympathy card. That’s fine. I don’t care, it’s not my motivation to post this. I’m just curious about other people out there (especially active ones) and how they deal with it. It’s just a way for me to better understand it or to help other people understand it.
I was only officially diagnosed last year and have kept it pretty quiet. Why? I’m not really sure. I believe medical information IS private. I suppose I’m scared it may give my current, limited catastrophic health insurance plan a reason to drop me or raise my rates. I guess I just don’t know how to explain it to people. I don’t want people to think I’m playing a card.
What motivated me to blog about it? Well, this morning I missed a half marathon due to an RA flare and to be quite honest, I was pissed and frustrated. It’s the first RA flare that has put a serious damper on my plans. And I grew even more frustrated trying to explain to a friend how I could be bed-ridden in the morning and now contemplating going for a run 10 hours later.
For those not familiar with RA, in simple terms it’s an auto-immune disorder that causes your body to attack healthy cells and results in chronic inflammation of the joints. Some people with RA have limited or no symptoms. Others are wheel-chair bound with serious joint deformities. There is simply no way to tell how badly RA will affect you or how quickly it will progress. Nearly everyone pictures RA sufferers as old and inactive. Truth is, it can affect everyone, even younger, ridiculously active people like myself. For that reason, I often get a doubtful look when I say I have RA. “But you’re so active and young!” is a common response.
My initial symptoms started probably two years ago in my mid-30s. It was more of a joke at the time really, with people (myself included) laughing at how crippled and debilitated I was in the morning. It wasn’t constant, but occasionally I’d wake up, lay in bed for a while in agony, and gimp around wondering why my body wouldn’t work. Was it the mountain bike ride I did? Yesterday’s run? The hot yoga? It would take me an hour of painful activity before my body would shake it off.
People told me I needed to take it easier and not be so hard on my body. But I wasn’t doing anything differently. I was running, biking, doing all the same things I had for years. What was so different now? And why did it only happen occasionally? The gimpy jokes continued until one day I woke up with the flu. Well, I thought it was the flu anyway. I had a low grade fever with the chills, my joints ached like I can’t even describe, and I felt utterly wiped out. Interestingly enough, sometime around noon I got up, started moving, and was out on an 8 mile run later that day feeling great. That was the shortest flu episode I’ve ever had!
A few months later after the third of these occurrences I knew something was wrong. There’s no way I’ve developed a mysterious 6-hr flu three times. I mentioned it to my doctor, who saw my family history of rheumatoid (both my dad and his mother) and she immediately threw up a red flag. The funny thing about RA is that there is no definite test to confirm it, or so I’ve been told.
My blood work showed a slightly elevated white count as well as RH factor, which apparently is present in 80% of RA patients. Given my history, symptoms, and blood work, the doctor concluded I likely had inherited RA and was having what’s called an RA flare, a period of increased activity, probably brought on by an extremely stressful year of running my own business.
Since seeing a rheumatologist, I’ve focused on natural ways to help my RA and have learned how important it is for me to eat healthy and clean, sleep well, and stay stress free. Of course that’s good advice for everyone, but even more so for RA sufferers. For the past six months I’ve incorporated more Mediterranean-style food into my diet, I’ve been religious about getting proper sleep and eliminating stress in my life. I’ve stayed active and even gone back to lifting in the gym. I’ve supplemented my diet with natural inflammation busting foods like cherries, fish oils, and glucosamine. I’ve been feeling healthy and stronger than ever.
Then this week came along and knocked the wind out of my sails. I’ve had a busy work week that has elevated my stress and reduced my sleep. After a mountain bike ride Wednesday I noticed my body hurt more than normal. By Friday I should have seen the impending flare, but I didn’t. I just kept asking myself why I was so sore and why my body was hurting so much. This morning I woke up ready to run probably the only flat half marathon in the entire Pacific Northwest and immediately knew I wouldn’t be running. My old flu-like friend was back.
I can see why it’s so hard for people to understand RA. How could I spend a week running and biking only to be bed-ridden with massive fatigue and painful joints on a Saturday morning? It’s hard for me to even understand. Just like my prior flares, I stayed in bed with my dog faithfully by my side until sometime around 12:30pm, when I was finally able to get out of bed, gimp around for two hours, soak in a hot tub, and rejoin life. Now it’s 5pm and despite a bit of lingering fatigue, I’m ready to go for a run and though not 100%, I’m feeling much, much better. Try explaining that to your friends. They see me in the afternoon and can’t understand how I felt so awful this morning as to skip a race I’d been looking forward to for months.
Now that I’ve dealt with RA for a bit, I consider myself pretty lucky that I seem to only be affected by RA symptoms a small amount of the time. Occasionally the joints of my hands hurt so bad I wear gloves to keep them warm. But it never lasts more than a week. Sometimes I wake up stiff in the morning, but again, it’s only for a few days at a time. When I do have a bad flare, it’s only once every 3-6 months and very short-lived. It’s usually related to a stress of some kind: I haven’t gotten enough sleep, I’ve taken on too much work and freaked out. When I pay attention, I can feel it coming a few days prior. So far I haven’t found it necessary to take any medication, which is good because the heavy-hitting drugs used for RA scare the hell out of me.
Though my dad is having more trouble these days, he’s in his 60s and incredibly active with the disease. He hikes 40 miles or more every weekend. My grandmother in Mexico isn’t so lucky and is practically wheel-chair bound from it. Her hands and joints are deformed and she is barely mobile.
I wanted to write this mostly because I’ve read the blogs of other sufferers out there. Some have frequent, severe symptoms and others experience flares only occasionally, like myself. It’s really bizarre to me to feel like you’re on death’s door in the morning only to be mostly fine later in the day. It’s somewhat comforting to know others have these symptoms too. If another RA patient out there reads this and it makes them feel better, my job is done And for those of my friends out there who do understand the strangeness of it, thank you!
Now I guess it’s time to regain my day from RA and do a short, easy run with the dog to reward him for being such a good nurse. Now that I’ve missed the only flat half marathon in the area, I have to sign up for the damn hilly Mercer Island half in two weeks. *sigh*