Wednesday, February 22, 2012

There Has to be Something More...

Well, I guess I should at least tell you all how my night out went. I did do okay. I felt bad, but not so bad that I had to leave. Of course, I paid for it for a few days afterward, but it was worth it. It was so nice to just be out in the world and being with friends, of course, made it all the more special. One of the women is also going to turn fifty this year. We talked a little about how we could celebrate this momentous occasion. I had the bright idea of renting a cabin in the Smokey Mountains. Oh, my! That place is just beautiful. And, I'll admit, I've been looking at the different cabins online. Now, if I was a healthy person I would be so excited about this, but as we all know, I'm not. So, again we will have to see how I am doing when the time comes around. I'm afraid it's hard to explain to someone how just going to a cabin and sitting around watching movies, talking, etc... can be too much. But, it can be. I'm putting all of the thoughts about it on hold for now; I will worry about it when the time gets closer (this summer). 


So, on to my featured complaint...er, topic. I know that I have EDS and some of the issues that can go along with it such as IBS and Osteoarthritis. But, I know there is something more going on. I just know it! My GP is convinced I have Myasthenia Gravis and I'm not(I know I've brought this up before).I think that I have some sort of problem with my autonomic nervous system (which can also go along with EDS). I really do not know how to handle this at this point. It took me seven years and dozens of doctors just to get my diagnosis of EDS. I'm not sure I can subject myself to the medical community again. Them doubting me, mostly. Although I have to say that having that piece of paper stating my diagnosis from Dr. Tinkle has already been very helpful. Surely having that, plus knowing that autonomic problems can go along with EDS will be enough to get me in the door somewhere. Of course, just getting in to see someone isn't always the problem. It's getting them to order the tests, and if that's done, having the tests actually show something. Along with getting to the doctor, there's the whole fact that many times I'm just too sick to go to the doctor. Grrrr!!!


I need to make a plan. I'll tell you all so I'll be sure to follow through. Okay, I think what I will do is to email Dr. Tinkle's genetic counselor. I'll explain to her what is going on and see if he has any ideas. Maybe he Would be able to refer me to someone. I also need to make my follow-up appointment with him for early this Fall. I'm giving myself a week to do this, although I'm sure I will get it done sooner.


Today, I'm in bed because, along with every thing else, I either have a GI virus, or my IBS is acting up. Whatever it is, I'm staying close to the bathroom. I'm so, so weak. I'm thankful that I have a stash of Powerade here in our room. For some reason, I'm anxious today. I think this bug has got my whole system out of whack. I honestly think the autonomic nervous system can be affected by so many things. At times like this, I really have to keep my mind busy, or I start to get scared. Thankfully, I don't get this way too often, but when I do, it's so uncomfortable for me. I wish I had a stronger faith (really, any faith), but I don't have much anymore. I feel like a hypocrite, at times, when I pray. I'm sort of in a holding pattern when it comes to God at this point. I hope, if he's really there, he wont give up on me. 


It's funny, I have trouble praying, but I have no trouble asking people to pray for me or my family. So, perhaps I'm not such a lost soul after all. So, I'm asking. Please keep our family in your prayers. Tim has a chance for a change in his job which would bring us more income, better hours, and, I believe, a more satisfying job for him. I hate, hate waiting, but waiting is what we have to do. We probably wont know anything until mid to late next month. 


Until next time, peace be with you and your family.


Shari


“Good friends, good books and a sleepy conscience: this is the ideal life.” 
― Mark Twain







No comments:

Post a Comment