Tuesday, October 13, 2009

The truth.

I know I promised a detailed post about all the tests and procedures that I endured during my last hospital stay, but I don’t know when or if it will happen. Even writing this has meant lots of deleting and restarting and giving up. And I know why. There are a few things about my stay at the hospital that I have been afraid of admitting and no matter how hard I try, I am incapable of composing anything post-worthy that excludes these facts. So, if I ever want to update this blog again, I need to be upfront and honest about everything that’s happening.

  1. The doctors think there is something else going on. Not that I don’t have multiple sclerosis, but that I have something AND multiple sclerosis. Most of the testing was done to find this mystery condition (including lupus and vasculitis), but with everything happening no one bothered to tell me what they found, if anything. To make matters worse, last week I got a call from the office of a rheumatologist who couldn’t tell me anything other than “your neurologist wants you to see us about a possible autoimmune condition.” Um, I already have an autoimmune condition, is this about a new one? Silence.
  2. I have had an excruciating headache for almost a month. It’s not getting better and not responding to any treatment. The worst part of this headache is that it has spikes and will suddenly become nearly unbearable. This means that even if I wake up feeling good, at any moment I could be struck with sharp, stabbing pains that last the rest of the day. It also means that I am spending more time in bed and things like eating, getting dressed, and doing chores just aren’t happening.
  3. At this time, I am not treating my MS. While in the hospital, I spent a lot of time thinking about the progression of my illness and how much sicker I’ve been since I started treatments. I might be wrong, but I think all the drugs and vitamins may have something to do with how I feel. While at the hospital, they suggested I may be interferon-intolerant and stopped the Betaseron. When I got home, I stopped everything else. I can’t say it’s the best decision, but until I have more answers about what’s going on, I’ll endure my symptoms.
  4. I’m more afraid than I have ever been before. I think this is the main reason that I keep putting off updating the blog. I can’t write about my time at the hospital or my life right now and hide the fact that I am terrified of what my life is becoming. Between the pain, fatigue, and sudden acute symptoms (blindness, inability to walk), I’m starting to question the plausibility of living a “normal” life. Seriously, how can I work like this? I also questioned whether I would make it home. I’m not trying to sound defeated or be overly dramatic, it’s just how I felt.

{exhale} When I got my diagnosis and started this blog, I never expected things to be so difficult so quickly, but they are. I’d be lying if I said that I’m handling things well, but I’m not. I have no idea what is going on with my body, I’m afraid of it getting worse, and my quality of life is pretty much gone. It’s not supposed to be like this and having the doctors agree with me but not offer answers isn’t comforting at all. I see the rheumatologist next Monday and my neurologist next Tuesday, hopefully I’ll know more then.


  1. I'm assuming you had a positive ANA titer, but do you know the pattern and/or how strong the titer was? (Ie. typical answer would be 1:280, speckled). That can give some leads as to what else could be going on. Sadly with that damn fever I had, I was tested out the yang for anything and everything (AIDS, autoimmune, molds, weird viruses) and they never found it.

    I have to say, nothing sucks more than being undiagnosed. When you KNOW you have a condition, you know your prognosis somewhat. But when you don't know... your mind can go scary places.

    Take care sweetie.

  2. Susan, you know too much! I just waded through all the results... positive, 1:80, speckled. Do you know what that means?