I’m not ready for this…

I’ve been lurking around this forum for months so instead of continuing to isolate myself I figure I’ll try to let someone in.

I was 37 when I was diagnosed with RA. I woke up one morning and felt like my phalanges had been forged in a fire. I could hardly move. I had NO idea that this was the beginning of a journey that was never going to end. After a few days like this I acted quickly and went to see my PCP who referred me to my Rheumatologist where he confirmed exactly what I didn’t want him to: Rheumatoid Arthritis. WTF? “I can’t handle this.” Is a sentence I still use every single day.

I don’t say this for pity or sympathy but only to establish state of mind. A year and a half before my RA diagnosis I was diagnosed with an Oligodendroglioma, brain cancer. All I kept thinking was how could I possibly manage another incurable disease? With these 2 diseases, one has to be put on hold to work on the other. So, for right now cancer is on hold (I still have frequent checkups) and I’m as focused as I can be on dealing with this b**ch called RA.

RA has ruined my life. I gave up a career that I loved, my children don’t live with me anymore because the disease is so unpredictable and what’s best for my children is THE most important thing for me, I continue to cancel plans with friends and family so much that I only get the “pity invite” anymore. You know the one where they ask if you want to go with them while literally on their way out the door? Knowing damn good and well that they really don’t have the time to wait for you to get ready. I know it’s 100% about them but that doesn’t make me feel any better.

RA has been very possessive with my body, my time, and my energy. RA HATES change. RA has ruined my hair, my skin, my eyes, and because I was on prednisone for over a year I gained 100 lbs. and I sweat like a stuck hog. I don’t recognize myself. RA wants me all to its self. When I try to lay down for bed at night the only thing laying with me is RA. I can’t imagine many men willing to share that bed and that burden.

I feel people don’t understand. They look at me and just assume I’ve become lazy and maybe I like donuts a little too much. I’m sick of the suggestion that “a little exercise” will fix the problem (really? I didn’t know.) I considered myself an athlete for a long time. Now, folding a few loads of laundry will bench my hands for days.

I would give anything to find people who understand me. This is a lonely life and RA is a very lonely disease. I’m not completely hopeless. I do believe that one day I’ll find a med or a combo of meds that will help me find my way to that illusive remission people keep talking about. I just wish it would happen sooner than later so I can work on this new life I’ve been given. I have so many plans for myself and my kids.

I don’t need a miracle. Just a chance.

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