Years ago (pre-RA), as soon as my alarm clock went off, I literally jumped out of the bed. It seemed to me that I was more tired, the more I tried to milk the morning for those few extra winks. I was energized when I jumped out of bed. I fooled myself into believing that I was not tired. Back then, it was “mind over matter”. I can’t jump out of bed any more, but trying to keep a sunny disposition helps to fool me into thinking “it’s going to be ok” or “you can do this”. So, as Gilly commented, we do tend to “gloss over” our symptoms most of the time. Is it that we are getting accustomed to our situation? Is it that we are trying to put our best foot forward? It’s our best defense against depression. Additionally, we don’t wish to be viewed as depressed, hysterical, a buzz kill, etc.

There is a real difference in the way my rheumy acts toward me when I go in and tell him I am “doing great” and when I tell him that I’m not doing well. He seems frustrated when I report that I have not been well over the past month. When I report good things, I receive a favorable response. When I started seeing his ARNP, and 2 sets of eyes were on me, he seemed more interested in my situation. Especially when we were discussing my mouth ulcers which I thought were to be expected and dealt with, since he had seen them at my last appointment. When I mentioned that I have had them for about 6 months, and it affected my appetite, and was responsible for me being about 20 pounds underweight, the physician said “I thought you had a geographical tongue”.

I went to a general practitioner last week. I decided I was safer having a multi-disciplinary team overseeing my health care. I explained to the new doctor that I just got over a stomach virus. I explained that I have RA, and that I often have to wear splints on my hands and my wrists to support my tendons while I am lifting heavy patients and sometimes it helps to reduce the pain to wear the splints. I was concerned that I was cross contaminating myself with the splints. Though I wear gloves, and wash my hands, the splints are fabric and so there is no way to clean them between patients. I requested a referral to occupational therapy to have washable splints made to support my tendons while I am working and having a flare. It makes perfect sense to me. The physician did not say that she would not order the occupational therapy, but today when I called the office to ask about the referral, I was told it was not ordered.

I have already had one tendon repair surgery, and had absolutely no use of my dominant hand for over one month, with the exception of physical therapy. I never want to go through that again. I am single, and I must work. I believe that I am expected to work until I physically cannot do it anymore. It makes more sense to me to prevent injury to already inflamed tendons. Give me the tools I need to work with.

I’m glad to see a physician here, reading our comments. I wish more of them would. I have already shared with you, that on my first appointment with my rheumy he said “you’re not one of those E patients are you?” I didn’t know what an “E patient” was back then. I guess he’s going to be pissed when I go to my appointment Monday and request he send me to OT for splints.

I think it is very important that Rheumatoid Diease be named just that RHEUMATOID DIEASE. I hope that within time and getting the word out people will come to understand this diease and what we go through.