Wednesday, February 5, 2014

February Madness

It seems as though our family has gone from one person with chronic illness to two. Our youngest, who has not (yet) been diagnosed with EDS, but has been diagnosed with POTS and hypoglycemia, has been going through testing for GI issues. She's had an endoscopy and a colonoscopy. Tomorrow, we get all the test results. I'm finding, at times, I just don't have the mental energy to be what she needs me to be. To be there for her. It's as if I can't handle one more thing. I hate being this way. I try to listen, but my advice giving skills aren't always what they used to be, or what they should be. I'm grateful that she has a very caring boyfriend and friends who are there for her. They sort of pick up the slack for me. Maybe this is the way it's supposed to be as your kids grow up anyway. I don't know. I do feel as though once we find out what she's dealing with, we will both be able to handle it better. That was certainly the case for me.

Last week I went to an appointment at an MDA clinic. I was very disappointed in how things went. For one, the doctor had never even heard of the genetic mutation that I have. I tried to explain to him that this was one that was recognized and covered under the MDA program. It didn't matter. He did a brief neuro exam and said he could find no sign of a neuromuscular disorder. He tried to blame all of my symptoms on EDS. He did say that he would give me the same advice that he gave his patients who did have these disorders....pacing, diet, exercise, etc. When I asked him about the specific mutation that I have, he said he wasn't too sure about genetic testing. That we'd all probably have mutations of some kind if we were tested. Huh? That may be true, but when one is discovered, shouldn't it be treated if there is a treatment? I'm so used to this kind of disappointment that it didn't even phase me this time. Pretty sad, isn't it? I'm going to discuss my appointment with my PCP. And, when I see my EDS specialist in May, I'm going to ask her opinion on what my next move should be. She's a geneticist and she was concerned enough about it when I told her about the discovery that she did a bit of research and thought I should see someone.

I'm going to close things with a link to the Peaceful Mom's Anti-Depressant list. The instructions are to try one activity a day. This, of course, is not meant to treat, or solely treat, true depression. But, it sure can't hurt.

No comments:

Post a Comment