Well, I went to see the internist yesterday, and after answering lots of questions, and a very thorough examination, he proclaims that he knows exactly what is wrong with me. That I have a form of reactive arthritis called Reiter’s Syndrome. He goes on to tell me about Reiter’s Syndrome, that I seem to have a severe case, prescribes me anti-inflammatory medication. He assures me it is temporary and will cause no permanent damage. I then ask how long I may expect to have this, he says it’s usually a few months, I remind him I’m about 3 months of this now, and he says it will probably go away soon, or, you may have Fibromyalgia. What? knowing exactly whats wrong with me, and ‘or you may have Fibromyalgia’, do not really go together. I got sent for more blood tests, and have a follow up appointment in a month. There are no definitive diagnostic tests for Reiter’s Syndrome or Fibromyalgia.  Usually only time will tell.

Now, the doctor talked a fair bit to me about reactive arthritis and specifically Reiter’s Syndrome. He very strongly implied a mild short term condition with no lasting effects. Which was reassuring, but at the same time confusing, because my pain levels and degree of impairment from pain and weakness are severe, and honestly, I’m not a pussy. I’ve had a lifetime of serious ailments and painful ones, IBS, appendicitis, grapefruit sized uterine fibroids dying in my body, major surgeries, etc. I know pain. I have major pain, I have pain that prevents me from sleeping, that wakes me in the night. I have pain and weakness that stops me from typing more than a couple of paragraphs at a time, that sometimes means I can’t open a bottle of pop because the lid is too tight, and I have to use my arms and my legs to struggle from a seated position on the toilet. A very little reading on the internet gave me some additional info on Reiter’s and that it may go on for a year or more, it may indeed recur, and, it may cause permanent damage to my joints and bones, in severe cases.  It may progress into other forms of chronic arthritis. So… I’m far from relieved.

All I have is a diagnosis that means you may be okay, sometime in the future.. or you may not. You may end up with complications, possibly even deformities, but it’s unlikely. Mind you, it’s unlikely for a woman to develop this particular illness to begin with, even more unlikely that it’s of the kind that effects the whole body.. the kind that unlikely or not, is more likely to lead to permanent chronic problems. Am I paranoid? No, I’m just scared. A lot of pain will do that to you, any possibility that you may have to put up with it long term is going to be a fear. Honestly, I am afraid of how I will cope. I’m disabled by the level of pain and weakness I have. Of course I’m upset. I may have to live the rest of my life like this, it’s a possibility. It may go away, and it may also get worse. It may be months still, potentially a year, maybe more, before I even have a definitive diagnosis, rather than the ‘or’ diagnosis.

Then I feel guilty, weird isn’t it. Guilty for being ill?. Like it’s my fault, a cop-out. What about all those other people with chronic illness, with more severe disabilities or disorders, with worse pain. Look how some others cope and function. People with children, people in worse situations, and here I am whining, feeling sorry for myself, wanting to give up, scared. My body hurts so much, after a couple of heavy pain killers, a muscle relaxant, and the anti-inflammatory, that I can’t help tear up time to time, that moving is challenging, that typing this hurts, yet I feel guilty. I feel like I’ve let myself down, my husband down, my family down, my friends down, my community down.

Pain messes with your head. Pain that is with you for three months messes with you… what does pain that is with you three years do?… Am I a strong enough person to find out? Do I have a choice?. No, I just have to have patience… things may get better, things may get worse, things may stay the same. Life goes on regardless of what is going to happen in my body, and I have to live it as best I can.

I can’t write anymore. I don’t want to cry about it, but right now… it’s just what it is. Tears regardless.

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