I just had a nice little chat (is it called a chat if you are talking over text message?) with a friend of mine. We used to work together and periodically we chat. For the longest time (a couple years) we would chat about work stuff… how do you do this… how would you go about that. 🙂 I have been her pet DBA. She, and her partner, got me started at Gold’s originally four… or five… years ago.
She found out, recently, that the yukkies that she has been fighting for, apparently, the last couple years (she quit working where I work right about the time I got diagnosed with RA) is rheumatoid arthritis. She is starting on methotrexate. She is on prednisone and feeling like she is crawling out of her skin. I know she has to be scared even though she comes off all cool and shit.
She put in to try to get Dr Booth (my rheumy) to take her on as a patient. She doesn’t like the doctor she has. He is of the school that the appointment should take all the way of ten minutes end to end.
Tonight, we talked about drugs, and support and being able to kvetch and whine.
Much as I don’t like to spend time whining about what is going on in my body. Much as I don’t like to sit and dwell on the down side, the bad side, the aches and pains, sometimes having someone who is able to understand… really understand… what is going on in your head and in your body to swap stories with, to swap tears and curses and fears with is good.
I think it would do her good to read some of the blogs that are out there… to see what other people have to say… to see the take other people have on life in general and living with RA. I think she would fight, kicking and screaming, from being drug into facebook and the groups there that are supportive… but I think that would do her good too. She’s so new to being diagnosed that she is still swimming up stream.
Is there a reason I have RA? Is there anything good that can come out of hurting and understanding? I think so.
Is there a time to kvetch and fret? Sure.
It’s kind of scary to be able to answer the questions… which medication is the least horrible of whatever might be next. What are the side effects. Are the benefits worth the side effects? They say this only works for two or three years… they say that only works for two or three years. And I completely understand. At the same time… I also realize that if I can buy myself two or three years, they are liable to come up with something else either less horrible or more wonderful in those two or three years and maybe when that time comes it will buy me another ten years…
I guess thinking that way may be a little fatalistic… or may be a little Pollyanna… I’m not sure which… but… I remember the last time I was at Disney World and crying while I walked into the hotel room from the parking lot. The pain that had me in tears, as I walked all alone across the blacktop, looking longingly at the grass. Praying for a puddle to step in to maybe make my feet quit screaming. Looking at my feet pushing against the strap of my Teva sandals. I think back and remember and look now at where I am and realize that… while I’ve been on Enbryl and Humera and now Orencia as an accompaniment to the dreaded methotrexate… things have worked and stopped and yet I feel so much better than I did. I have times when my feet or my fingers scream. But I have many more times when the aches and stiffness are way more tolerable.
I hope I can help her through this maze she finds herself in. I hope I can help her partner weave her way through her struggle to fight for the woman she loves.
The more I think. The more I realize. The more that Dory swims through my thoughts. Kvetching or not… I know that, come morning, I will be back in my own Big Blue World… swimming swimming swimming.
I wish, for everyone… pain free sleep… virtual hugs… and someone with whom you can kvetch when the need arises.