Tuesday, August 7, 2012

I don't know these answers

Who, What, When, Where, Why? I remember that from 9th grade journalism class. But I don't know all the answers, really, but will take a stab at them The Who: That would be me, diagnosed formally with Sero-Negative Erosive Rheumatoid Arthritis about 9 months ago. Nearly 54 years old, married at age 39 for the first time. Became a mother at age 47. Overweight most of my live and currently in the morbidly obese category. Insurance supervisor, a job I love and hate by turns. Live in a house I bought before getting married to Charlie in 1998. I used to do a lot to it all by myself, painting, putting up fencing, gardening, etc, but somehow that all seems to be going downhill and now I feel like we live in the worst house on the block. I think that's a subject for another post though. Another couple of Whos in this story: My Mom. She is 81, has so many health problems that it's hard to believe she is upright and functioning-that's something she struggles with every day. She has had many diagnoses, multiple failed back surgeries, a digestive system that collapsed after years on NSAIDS that she took for her lupus, fibro, RA, MCTD - just a few of the many auto-immune diagnoses she has been given. She potentially has an incredibly rare neuro disease (she is currently convinced this is the cause of it all, but it doesn't seem to completely fit either). Anyway, she has a lot of difficulty getting around, but she and my dad (who has health issues of his own and has never exactly been someone who helps around the house) still live in the big old Victorian house we grew up in. Three stories plus attic. Steep stairs. Constant upkeep. Gorgeous gardens. Both the house and the garden have been on many tours. Back to the RA Who - Mom's cousin Carol Lou, formally dx'd with RA at an early age. A grandfather who died at a fairly young age of some kind of muscle/arthritis/something or other disease. My sister who has neurological problems. And who know who else. So clearly there is something in the family. The What for me is the diagnosis above. It means I don't test positive for the Rheumatoid Factor which a fairly high percentage of people don't. But I have a high Sed rate, which measures inflammation in the body, classic symptoms of pain, stiffness and swelling in my joints (hands and feet the worse, but now appearing in other fun places like hips). I also have some evidence of bone erosion on x-ray. Thus, the RA diagnosis. The When: this a good question because the symtoms have been creeping up on me for a long time. At some future point I will write a post about my adventures with an uncaring PCP, a great neuro and finally my amazing rheumy. But for now the When is probably this all started a few years ago when I started having pain in the fingers and toes and stiffness in the morning and when getting up from sitting for a while. I realized a while back that for at least the last couple of years, I have been choosing utensils with smooth handles only because the ones with designs hurt my hands....but I never thought about what that might mean. The Why? Oh poor me, why me, what did I do to deserve this? These are BS questions. Everybody gets something. With my family history this was a likely thing for me. I also firmly believe that the amount of stress I've had over the last few years (adopting 3 older kids, financial stuff, marital adjustments, a very stress-full job), probably brought it on faster or stronger or something. But I was going to get it at some point. The thing is now there are a lot more treatments available than in the prior generation's deay. My rheumy is committed to finding the right one (okay, it's not a given that there is a right one but there are lots to try). So there are the Five Ws of my RA. I feel better writing this and as I was typing I thought of a lot of other topics...my providers, the medicine, the support and lack of support, work and on and on. Most likely of very little interest to anyone but me, but I am going to write it all down anyway!

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