At War With Myself (and not philosophically)

10 02 2008

It’s amazing how reading a comment from a reader can cheer me up so much. Is it the knowing I’m not alone? Is it the hope and faith that things will change? Is it simply that someone else understands pain (which I wouldn’t wish on anyone). Things not really bearable but I’m making them work….forcing my body to work.

Every step I take pushes me to my next goals in life. I need those steps – those literal walking steps. Does it really matter that those steps are precious, tough, and amazing. I’m grateful for each stair step I conquer – literally with my feet, for each key I type – literally with my fingers, and for every kiss I get to make me feel better. But My body is revolting. We are at war together. We are one and the same. How can I attack myself? I love myself. I love the things I do and my work and career path and family life. I love being alive. I’m not secretly against what I do. I love what I do. Why am I at war with myself? I dont believe a word the new hippies say. I did not bring this on. I did not deserve this. On my dark days I might convince myself the new hippies are right – but how could anyone bring on this disease?  (Read more about the ridiculous name RA, my current medicine cabinet, and my minor sexual fantasy)…

And… what a ridiculous name: RA – rheumatoid arthritis. it is absurd. Such a small lame name for something so powerful and body wasting. How can my immune system attack me and simply be called arthritis? That’s something older women get and complain their elbows creak. I’m only 35. My whole life is ahead of me. And most importantly – the methotrexate (a chemotherapy drug) and prednisone ( a nasty steroid) have worn off and given way to the not yet working Enbrel. It’s been one week. My moon face is almost gone from the prednisone. It’s been one month and a week since i got off it. I am down but working my ass off despite this all. My client asked me to stay at least until the 15th. My schedule is packed and my dancing card is getting punched by people/friends/clients wanting to reconnect. Where will I find the energy? But I don’t want to give up. I really need a game plan so i don’t die trying to juggle life and pain. I’m in too much agony to have sex or attack Jax to beg for it in a very naughty way (blush- gosh – i’m just being honest). -i’m definitely listing this one under hard times.
– Sasha – please cheer me up.




One response

26 02 2008

Hey Sasha,
Just posted a note to you under another of your headings, though this would have been a good place for it. You are NOT alone. I gave up on hating the disease, don’t want to spend that precious energy negatively. But there are those days . . . You’re 35. I’m 55. I’ve been sick with this since I was at least 33 (and a single parent), stumbled along as it took another 15 years to diagnose. (A doc who listens is a wonderful thing.)
And now recently dx’d with chronic pancreatitis, as are you. Another thing I lived with for years, so glad I moved and found good docs who listen and take me seriously. Bad days are bad days. Do whatever you need to to take care of yourself.
Good day or bad, the best thing for me is to take a deep bubbly bath with a cup of epsom salts and some baking soda thrown it. Don’t have to scrub, the water does the work. Soothes the aches, lets you stretch stiff joints and muscles, feel clean and wonderful. Amazing easy therapy, for me anyway.
Feel better. You’re wonderful.

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