July 2014

I have a lot on my mind lately. First I want to address comments made on the most recent post I did on depression. I have had chronic medication resistant depression since I was about 6. So that is around 35 years of me living/dealing with it as best I can. To make any suggestion that I have not tried everything possible to get relief is preposterous. Also to imply that a suggestion will change the way I think, to me anyway is amusing. The best part of me is that very thing, my willingness to be myself. Your suggestions will fall on deaf ears. I am and will always be, my own person.

In the rheum department, I am quite frazzled. I fight like hell to claim the physical part of my life back and it’s not getting any better. I was told if I kept at it I would see results. I do not improve. Just lose more little abilities as time goes by. I keep moving hoping for more gain, only to be gripped by cramps and pain. My right leg has an attitude of its own now. If by chance it slips off the bed I can no longer make it lift unless I use my arms to physically move it. Brain says rise and the command is outright ignored. What the heck is that about? I cannot lift my own freakin leg? Come on now.

I need help to go shopping. Lifting 2lbs of sugar is now (to me anyway) an Olympic event. Using a knife? Let’s just say I don’t cut my meat anymore. Getting up off a chair? Hardy har har. I love being outside, but now I am paranoid of the sun because of biologics. I don’t need cancer thrown into the mix as well. I avoid interacting as much as possible. It’s no longer in my power to listen to anyone talk about how sitting still all day would make them crazy. Or that a desk job would kill them. Gotta be productive after all. Meanwhile I am listening to how much my life is worth to other people. Even if they don’t realize it. I don’t go out shopping much. I find it makes my anxiety haywire. For fear of tripping over unsupervised children, sick people hacking all over, pushy rude adults, lunatic antivax’rs and drivers who are in a rush.

I don’t do much in my opinion. Things that I could do in under an hour now take much longer. Frustrating way to have to live. Listening to people who aren’t sick makes me feel as though I do even less. I don’t live. I exist. Rheumatoid Arthritis stole a big part of me. I don’t recognize what’s left.

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Happy December.

Today I heard great news from my Rheumatologist, he said I’m doing great and will be even better as times goes by. I really couldn’t ask for better news. Today was the first time I left his office with a big ole smile on my face, I am genuinely happy. My next appt is in Sept 2014, 9 months from now. I got my scripts renewed for a year and no longer depend on tramadol or naproxen to make it through the week. I weaned myself off of tramadol in October of this year, it was one med that wasn’t covered and if I didn’t need it no sense in paying money I don’t have for it. A great deal of credit goes to my psych Dr who in a moment of brillance prescribed me cymbalta, it has been a lifesaver. My pain was reduced greatly from cymbalta, so much so my need for painkillers was reduced greatly and no patient with rheum disease could say no to one or two less medications to have to choke down everyday. I still take naproxen sometimes, but only as needed and not automatically added to my pillbox for the week.

I have been incredibly lucky, I am well aware of it. Between symptoms, diagnosis and the first treatments I took, the road looked long and grey. Through it all I had presciption coverage and disability benefits to ease the burden of disease, I know not all are that fortunate. I am most grateful for the coverage of very expensive biologics. It would be impossible for me to dream of having a mobile life without them. I’m not back to the life before RA point yet and I am not sure if I will ever get back to how I felt before disease, better than I was is my big goal now. Going from 1-2 good days a week in January to 5-6 good days now is substansial. The feeling I have along with it is monumental. My spirit is not nearly so crushed, my fear of passing away soon has eased. I can think of the future again.

I wish you hope this holiday season. Hold onto hope with every bit of your being.

Blessings.