Thursday, July 9, 2015

Another Diagnosis in the Family!! Two more!

I guess I have writers block. Can I even have writers block? I mean I'm not really a writer. I suppose I need to do a better job of jotting blog ideas down when they come to me. That does happen. I'll be reading something or be out and see something and I'll think "that would make a good blog post". But, it's out of my mind as soon as it arrives.

So, I suppose I could just jump right in and talk about this new diagnosis in our family. Yes, can you believe it? Actually, we have more than one. Elizabeth, our newlywed daughter, has been feeling a bit under the weather. She has EDS, POTS, hypoglycemia and microscopic colitis. She thought maybe one of those illnesses was the cause of her feeling so bad. But, she mentioned her symptoms to one of the doctors she works for, who happens to be an Endocrinologist and he thought they should check her thyroid. Her thyroid antibodies were through the roof, showing she has Hashimoto's Thyroiditis, an autoimmune thyroid disease. Her TSH levels are okay for now, but they are going to check them every few months. When they go up, and he says they will, they will start her on meds. She has been, understandably, upset. I mean here she is a newlywed, working full time and already dealing with several other illnesses and now she has this. It just doesn't seem fair. She is doing some research on doctors, treatments, etc, which is a good thing. She's concerned about how this will affect her ability to have children. I'm guessing she will be concerned a high risk pregnancy. 

I received yet another diagnosis, too. I went to the retinal specialist my eye doctor had sent me to. He said my retinas didn't look too bad and that I had the best eyes he'd seen that day! Apparently, there is some pigment changes beginning, but it's really not too bad according to him. However, he did find that I have the beginnings of a cataract in each eye! I was not expecting that! Now I have Glaucoma suspect, cataracts, macular degeneration and severe dry eye; all in addition to my eye muscle disorder and farsightedness! Most of the disorders are in the early stages which is good. I will probably have to see the eye doctor every six months for the rest of my life, but if we can watch for changes we can begin treatment early, possibly slowing down or halting the diseases. 

Because of the severity of my dry eyes and because I've had elevated autoantibodies in the past, there's a chance that the dryness is caused by an autoimmune disease. I'm probably going to have blood work in the next few weeks to see if anything has developed. It's possible that the dry eyes are caused by EDS or dysautonomia, or even my age,  but because we have a strong history of autoimmune disorders in my family, it would be wise to check it out. The trouble is, I am sick and tired of going to doctors. Sick and tired of being tested. And, I've been doing fine living in denial this summer. 

I know this post is all over the place. Sorry. One final thing I want to bring up has to do with googling. After Elizabeth received this latest diagnosis she immediately started googling.Talk about  instant stress. She found so much information, much of it conflicting. She read stories of patients who only wanted to do all natural therapies, those who were very ill, etc...It was overwhelming and it was scary. We talked about stepping back from the computer for a few days; then, finding two or three reputable sites to get information from. I also pointed out that many of the people on forums are the ones with the most severe disease presentation. Those who are doing well, are out and about living their lives. So, she's going to hear, mostly, about the bad cases. The discussion was a good reminder for me as I find myself overwhelmed with all that we are dealing with. It's good to just step away from it all and just be still. To just focus on something else. That's my plan for this week. 

"Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit."
Napoleon Hill


  1. Shari, sorry to read about all the new medial issues...Sometimes it's all we can do to keep our heads above water. It's very true about using the internet as a research tool, there is so much bad mixed in with the good. The American Thyroid Association is a good place for Elizabeth to get info Good thoughts coming your way!

  2. Thanks so much for the good thoughts and the info! I'll be sure to let Elizabeth know. I'm sure I'll do some reading over there, too.