Saturday, June 17, 2006

not-so-good

So I went back to the hospital to show them how my eye is so much better. It is. I need to continue with the cortisone for ever and ever it seems (at least two months), but it looked really good.
The blood work was back too. You see, inflammation to the iris can be connected to a number of chronic diseases. The very kind and very nice doctor showed me paper after paper that said negative. That's good news. But she saved the best for last.

HLA-B27 positive. It has to do with what kind of anti genes I have. It's like knowing my blood type. But being HLA-B27 positive combined with having problems with an aching lower back, and having had the problems since I was about 20 years old, and having had that pain climb up towards my chest from time to time... Yes, all the symptoms matched.

I still need a back scan but the diagnosis is:
I have Bechterews disease.

Logically I actually do look at it this way:
I've had problems with back aches for quite some time, and now, with the right diagnosis I will get the right help. Finally. I will get physical therapy and I will finally start exercising again. I mean, I have to. I can actually get better and have less pain than I do now for many decades, so by many means, this is a good thing.

But emotionally I have to deal with being a person with a chronic disease. Once again a number in the statistics. And I do appreciate (logically) that people care, ask me questions, give me advice, tilt their heads and say stuff like "poor thing". I know it's loving. But it drives me nuts. Since I'm trying to deal with this, understanding what it means to me, I hate everything that forces me to react to it, deal with it, in any other way than my own.

So I am sorry for not being the most communicative person in the world right now. I'm being a jerk for a while until I make logic and emotion merge about all this.

3 comments:

Zak Greant said...

Glad to read that you are out of the hospital and so on. I have been hiding out a bit. The new role at work is great, but has been a real challenge - enough so that I have mostly retreated into myself to focus on not burning out. Take care. Love --zak

Mandy said...

It's not being a jerk to reserve your energy for yourself when you need it. Tht's scary shit, Lisa (finding out you have a chronic disease, I mean), and it seems weird to think it wouldn't throw you for a loop. Don't add to your stress by criticizing yourself for being stressed! :)
Love,
Me

Stella said...

Just sending you some kind thoughts. You are a strong person and you can deal with this - you have up until now, and now you have more information, so you can take better care of yourself. It's normal to feel angry & stressed out. Use that energy to channel it into makeing a new plan.