I don't even know where to begin because it's been so long since I've written an update. So much has happened. I finally received a referral to the MDA clinic and I have an appointment for next month! I am trying not to worry too much, but I haven't always been real lucky with doctors. Hopefully, the appointment will go well. Hopefully, I can start on some sort of treatment.
Last month, I went for my yearly eye exam. My eye doctor is one of the most knowledgeable, caring doctors I've ever seen. I believe I've mentioned how she has a young woman on her staff who has EDS. Because of that and because she's just a very good doctor, she's making sure she's not missing anything with my eyes. There's so much connective tissue that makes up the eyes. So, she ordered an OCT (cat scan of my eyes). This test showed that I have a thinning of my optic nerve. This can be a preglaucoma or due to other causes. She wants to see me back in a few months to repeat the tests to see if it's progressing or stable. This is not something I was expecting, but with my body I suppose it shouldn't be a surprise.
I've been so, so sick lately. I mean my stamina is just not there. If I push myself at all I'm in pain, exhausted and weak. It does seem as though I'm much worse in winter. Of course, the holidays are an added stress on my body. Between the shopping, baking, cleaning and wrapping anyone would have exhaustion, but for those of us with chronic illness it's just magnified. This weekend, Aaron, our son, and his fiance are coming home for Christmas! It's been four months since I've seen him (them.) The longest I've ever gone without seeing him. While they are here, besides celebrating the holidays, they will be shopping, meeting with vendors, etc for their June wedding. Also, her parents are throwing them an engagement party the Saturday after Christmas. So, it will be a busy time for all of us.
Our youngest daughter has now been diagnosed with POTS, which is common in EDS. Her blood pressure drops so low. She feels just terrible with it. She's also had problems with her blood sugar being too low. It seems as though she's doing a bit better the past few weeks. She's eating more frequently and drinking more fluids. She's yet to receive her official diagnosis from the geneticist, but we know that she has EDS. We both have an appointment in May to see the Geneticist. Hopefully, the doctor will have some more ideas to help her deal with these other issues she's having along with the EDS.
I'm working with our new church to start a chronic illness support group. I tried at our old church, but I didn't get much support. This church is very encouraging. It could have something to do with the fact that our youngest is dating the preacher's son...but, probably not. It's just a dynamic, welcoming, growing church. I'm a bit nervous, but I feel as if this is something I've been called to do. And, I feel as if it's a way I can make something good come out of my illness and, also, give back to the community. I'm hoping to get it started some time after the first of the year.
I have more to say and some links I want to post, but I think I'm going to end here. I want to get this posted before much more time passes.
Happy Holidays to all.
"Suffering can make you more lonely or drive you into deeper community. Let it be the latter."—Tim Keller