I still want to get to everything I have done thus far in battling RA. But right now, I REALLY have to get something off my chest. In November of 2009, my rheumatologist (who may not remain anonymous for long in my blog) prescribed a round of prednisone. My body got very mad about this and I could barely walk as a result of taking it. I know that steroids can be extremely helpful to some and it made no scientific sense that I felt worse off after taking them. But I DID, whether my Dr. believed me or not! This was the first pharmaceutical approach for me since my diagnosis. I had previously tried a steroid injection in my thumb, which did not work and hurt like crazy.
Once I finished the entire round of prednisone and felt a LOT worse off than before, I called to set up an appointment with my Dr., was told he was out of town, asked for another Dr. in the practice and told the gal on the phone that I really needed to see someone. I could barely walk. The joints in my toes were crying in pain.
I got an appointment with another Dr. who turned out to be much better than the one I was currently a patient of because he was a lot more thorough. He told me I had inflammation all over my body and should consider starting methotrexate, a low daily dose of prednisone and a biologic as soon as possible. At the same visit, I asked him if he could please fill out paperwork for me for a handicap placard.
As many of you know, this is a defining moment and it takes humility and a hard swallow of reality to take this step. But I felt desperate. The thought of walking multiple grocery store aisles, let alone getting from my car in a giant parking lot to the store’s front doors is overwhelming. I can’t do it anymore without a tremendous amount of pain.
The Dr. didn’t bat an eyelash and said he would be happy to sign the form–but said I had to smile for him as he flashed a smile at me. He wrote on the form that I had moderate to severe RA and checked the box for a temporary placard. The fact that he checked “temporary” was a relief because at this point I was pretty gung ho about kicking this illness to the curb. I thought–ok, I have until May 2010….
Where am I now?
I have since tried a shot of depo medrol in my arm. This helped slightly but I knew it wore off promptly after two and a half weeks because the pain came screaming back–not quietly, but loudly! And because my body was so angry about the steroid injection, it decided to attack a new finger with a vengeance. This finger is still swollen and on fire.
Overall, some days are better than others. That is why I find such solace in the words of other bloggers. You tell the stories of why autoimmune diseases are so misunderstood and difficult to deal with. To the world, I appear fine. I don’t look sick. I am on my feet. I am in great shape. Despite my illness, I feel like I am in the best shape of my life. But I am in chronic pain.
I am not due for another appointment until June and my handicap placard expires this month and well, walking is still very painful on most days. I only used the placard when I really needed it. It truly made a difference in being able to get around functions at my children’s school and make it across the giant parking lot at church, among many other places.
I sent a fax to my Dr. with a note about how helpful the placard had been and how grateful I would be if he would please sign the form so that I could renew it. I also included the previous form the other Dr. had filled out so he could see his notes. It took over a week and several calls to the Dr. office to get the fax into my Dr.’s hands. I finally received a call from his nurse last Thursday. She left a message on my machine that went something like this– “Dr. **** said he isn’t going to sign the form. They are really cracking down. If you have any questions, you can call back.”
My Dr. said what?! So many emotions surfaced inside of me…
And then I cried. And then a lot of ugly four letter words sprung to my mind. I still feel slightly dumbfounded by his decision.
My next step is an appointment to see my podiatrist tomorrow. I am going to explain my situation to him and go from there. He has not seen my feet in a long time. The last time I saw him, I was having painful feet, but still didn’t have a diagnosis. Now there is damage to my toes to show him. But then what? Do I keep my current rheumatologist and have a “come to Jesus talk” with him about my pain?! Is he punishing me because I won’t start the medications he has been wanting to put me on? I am really curious about why he has done this. But do I seriously have to pay a $40 copay just to find out? Do I try to get in to see the “better” rheumatologist? I told him I wanted him to be my Dr. when I saw him and he squished up his face and said it would be tricky (office politics, no doubt) but said he would talk with my Dr.
In the meantime, I pray for the wisdom to make the right decision and welcome the insights of others.
(Also, in the meantime…please be patient with me as I navigate my way through WordPress. I am new to this land and there is much I must learn and much I want to do. Bravo to the bloggers that I first stumbled upon and have learned so much from and identified with so much. You guys are like rock stars! : ) Pollyanna Penquin was the first one I stumbled upon in a search about something RA related, I’m sure. Then I found Remicade Dream, RA Guy, and RA Superbitch. Thank you for the dedication you have to your blogs.)