I’m doing my best to deal with the recent news. I don’t feel particularly sick right now and my strength and endurance are both pretty good. Still, I’m aware that my body is waging war on itself and am a bit unsettled. I have multiple swollen joints and nodules on my knuckles. If not for those we probably wouldn’t have gotten the diagnosis for a long time. I’m grateful for this but scared because everything I’ve read indicates that nodules are associated with a more aggressive disease mechanism.
I’m not just going to take it lying down. I’m improving my diet, working out and staying active. I plan to ask my Rheumatologist what supplements I should be taking. I’m not wallowing in self-pity or seething with a bunch of ‘Poor me! Why me?’ bullshit. Still, I have to admit that I’m a bit scared. This is one of those illnesses where the treatment can be as rough as the disease itself.
Again, I don’t feel sick right now and I’m not going to start soley based on a diagnosis. The prednisone has been giving me some relief and I’m not hurting too badly right now. I just figured this would be a better place than Facebook to get some things off my chest.
Here’s what really frightens me: I was on SSDI for bipolar disorder for almost five years. When my case was flagged for termination I appealed and took it up the chain of command. At the time I was severely depressed and struggling with mood issues. After over a year of appealing my medication was changed from lithium to Risperdal. The improvement was astonishing. I began working and dropped the appeal. Then I got stuck with the bill for my benefits while on appeal (11790$ or so). I’m paying it back at the rate of fifty dollars a month. My big fear is that Rheumatoid Arthritis will cripple me and I won’t be able to get any help. This is a thought that has been keeping me up at night with apprehension. Essentially I’m being punished for getting better.
My boyfriend is trying to get into law school. Specifically to be a Disability Attorney. I’m hanging on to the dream that he’ll be able to help me with this before something bad and RA related happens. The odds are not in my favor. According to Johns Hopkins website sixty percent of people with RA become disabled within ten years of being diagnosed.
I am trying not to give in to fear and go about my life. It’s entirely possible I’ll have great treatment results and go into extended remission. I just don’t know and the future is intimidating the living hell out of me.
I was hospitalized frequently as a kid. I know the drill. I have to fight and keep fighting hard. This is what I keep telling myself when I want to cry, which has been quite a bit lately. I’m not going to use or drink over it and I’m not just gonna sit around and be sick. To hell with that.
I am in desperate need of some inspiration. Pray for Thom please.