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 me 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 are sometimes a gift from above and it made no scientific sense that I felt worse off after taking them. But I DID! This was the first pharmaceutical approach for me since my diagnosis. I had previously tried a steroid injection in my thumb, which didn’t work and hurt like crazy! So, 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, so I 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 saw the other Dr.–who by the way turned out to be much better than the Dr. 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 giant grocery store aisles, let alone getting from my car in the parking lot to the store’s sliding doors is overwhelming. I can’t do it anymore. And if I had to, it would be with a tremendous amount of pain. The Dr. didn’t bat an eyelash and said he would be happy to sign it–but he said I had to smile for him. He’s one of those kinds of doctors. He wrote on the form that I had moderate to severe RA and checked the box for a temporary placard. I have to be honest and tell you that 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. So, I thought–ok, I have until May 2010….
So where am I now?
I have since tried a shot of depo medrol in the 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. And 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 still really hurts on most days. I only used the placard when I really needed it. And it was truly the difference between being able to go to functions at my children’s school and being able to make it across the giant parking lot at church–among many others places. So, 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 that 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. **** doesn’t feel that you need the handicap placard and isn’t going to sign the form. 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 numb and dumbfounded about his decision.
What do I do now?
For starters, I have 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 I 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 “nice” 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. You are moving mountains!