Wednesday, September 24, 2008


Things have been quite hard lately. I had to miss work yesterday, because I was truly paralyzed by depression. I have a psychiatrist, who prescribes me 5 different drugs...I've been on some combination of them for 10+ years. I haven't had a psychologist since last summer. One was recommended to me, but I've just found out that she is not in my insurance network. So, I'll have to find a different one. But realistically, I don't know if anyone can really take the hopelessness away. It just comes and goes, as it always has.

I seem to go through two different phases: the fighter phase, and the resignation phase. While I was actively seeking out new treatment, planning trips to New York, having surgery, and doing physical rehabilitation for the majority of this year, I was in a fighter phase. I fought my multiple diagnoses hard, and tried to find ways to rise above them. But now that all of that is over, I've had to accept my life as it is...again. And it hurts, knowing that there's nothing I can do to feel any better. I've been through the cycle so many times. I've been in this exact place, feeling these feelings, so many times. But it never really changes. Because no matter what medicine they put me on, or how they cut me up inside, how many new scars I have on my body (and on my soul), I still go back to feeling like this.

My current plan is supposed to be to wait. I need to see an endocrinologist to have my very mild osteoporosis-like condition treated. Of course, I've already had one refuse to treat me, and I'm awaiting an appointment next month with an osteoporosis specialist. We'll see if she is willing to treat me. The only reason this matters is that Dr. B will not consider further treatment until my bones have a higher density. I have to be on that treatment for 18 months for Dr. B to be satisfied.

So, I'm waiting for that appointment. Also, I have to wait for a full year after spinal cord detethering to see full recovery. (They said the same thing after my fusion...) I just have to wait and see if anything gets any better. That's a really hard place to be in.

I need to work on arranging another support group meeting...but it's a little hard with my schedule and my exhaustion. Still, I think it's an important thing to do.

The widespread body pain has really been plaguing me lately. I should probably consider a new pain doctor, as well. I've had 2 local pain clinics run out of options for me. So, I'll have to find a new one, somewhere. It's quite likely that my pain stems from my Hypermobility Syndrome. There's some interesting information about how this relates to all-over body pain at this site:

It suggests that people with EDS/Hypermobility Syndrome "may also have a fault in the way their pain signals are picked up for onward transmission to the brain".

There's a story on another site, But You Don't Look Sick, about what it's like to live with a chronic illness. It was originally written about living with Lupus, but it applies to people with all sorts of chronic illnesses. Here's a link, if you're interested. Maybe you could show it to someone you love, to help them understand:

Thanks for anyone out there.