It's only time

I had my first rheumatology appointment today. I started having symptoms in July 2013, and the first blood tests that showed up positive for Rheumatoid Arthritis were performed in August. As soon as those results came back, my doctor started calling specialists to get an appointment for me. There are two practicing groups with Rheumatologists in my area, and one in the next town. The first appointment they could get was more than three months in the future. I tried calling, too, but there were no sooner appointments available. So I waited - and my condition got worse. I went from having mostly good days with some stiffness and pain to having mostly bad days with brief - sometimes only hours-long - periods of normalcy.

In the interim between the first blood tests and today's appointment, I saw my general practitioner three times. Each time, she prescribed different anti-inflammatory medications which were supposed to help my symptoms and the pain. They didn't help. One of them caused my stomach to bleed. The other one caused me to feel sick. I stopped taking the medication and just waited it out.

Finally, today was the day. I went to see the Rheumatologist and the appointment went well, I guess. He was thorough. He took my history, manipulated my joints, did a saliva test, had blood drawn for labs, and sent me to be x-rayed. He asked all the right questions. I liked him. But I am frustrated because we are back to the waiting game again. At check-out, the quickest appointment I could get was February 6th. Results should be in within a week, give or take a few days, but it'll be at least three weeks before I can find out exactly what's going on and before we can even begin to devise a treatment plan.

Three more weeks. I know it doesn't sound like a lot. But the pain is near-constant and I am already having a hard time functioning. The prospect of another three weeks of this is nauseating. I know that once I begin treatment it could be as much as six months before there is any significant improvement. Contrary to how it may sound on this blog, I try to be positive about my health and my future. But this waiting is so frustrating that I could just scream. The longer I have to wait the more damage this disease is doing to my joints and my internal organs. The more pain I go through. The more fatigue builds up.

Today, the doctor asked me if my pain and stiffness was affecting my ability to carry through with activities of daily living. I answered yes. He asked me which ones, and I told him it would be easier to list the ones that it didn't affect. For example, I can still cook, though I have to use an electric can-opener now, and if a lot of chopping, slicing, or container opening has to be done, I usually need help. I can still do laundry, but it's kind of moot, because it is usually impossible for me to get down the stairs to the basement where the laundry-room is. There is a huge mound of unwashed clothes down there and there's not much I can do about it. I can still go to work most days, and I can still do my job well, though by the end of the day I am exhausted and in the kind of pain that no amount of ibuprofen or Tylenol can touch. Even sleeping is hard because when I wake up to change positions in the middle of the night, my elbows, shoulders, and back hurt so much that it's almost impossible to get back to sleep.

So yes, everything is affected. My body, my relationships, my mood. My life. But hey - it's only time. Three weeks isn't that long. And another six months after that isn't so bad. I think the hardest part is not the pain or the fatigue, but the uncertainty about the future. Knowing that I am twice as likely to die as other women my age - knowing that I am twice as likely to have heart disease; knowing that I could lose my ability to work - to hike - hell, to WALK... It is hard.  I know that there are plenty of people out there who have it a lot worse. I get that I am not the only sick person in the world. I know that none of us has a future that is assured and that I am lucky to be alive and to have access to health-care. I get it, and yeah, I feel guilty for griping. I am just so tired of waiting for answers. So damned tired.


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