Closer To Answers?

A followup on my last posts with somewhat good news about the visit with my Rheumatologist. The appointment went better than expected when I mentioned suspecting EDS as the underlying cause for my Fibromyalgia, Dysautonomia, and years of other issues. It still panned out how I thought it might with him wanting to refer me to see a genetic specialist. The problem standing in the way is affording the genetic testing and related expenses since I don't have insurance and the city care I have isn't accepted at most places.

His clinic is going to call around and try and find a genetic clinic to refer me to that is either covered by the city care I have, or see if they can find some sort of charity or grant thing to help cover expenses of genetic testing and seeing the geneticist. In the meantime he's ready to go to bat for me for the disability application and even noted his feelings in favor of it for me in my record officially after we sat and discussed everything with him in more detail.

It's more frustrating because as I tried to explain to him, the hypermobility type of EDS doesn't show on genetic testing. He kept saying that EDS does. But everything I have read, and people have commented saying the testing isn't as important if you suspect EDS-H because testing can't confirm you have it as there is no identified genetic marker.  So I am not sure if he misunderstood me, or if he is not fully informed and not wanting to admit it, which is why he'd rather refer me out than give the physical criteria tests.

I'm just very worried about having to go spend $300+ for new patient fees and office visits and either end up getting blown off like in previous experience because "the genetic test didn't show anything/came back normal" ( keep in mind this test costs thousands and I don't have insurance), after spending so much money for years on other crazy medical tests and procedures of everything in and on my body.

The one thing giving me some shred of hope is people have said a good geneticist shouldn't waste time or suggest wasting money if they don't suspect vascular EDS ( which thank the gods doesn't seem as likely in my situation ).  So it'll just turn into another round of going and spending another $300+ to have a doctor look at me and say "Yep, you have it".

Now I just need to find an EDS specialist locally, in case whatever the Rheuma's office is trying to set up falls through.

Spoon Theory

Because I "look okay" on the outside, it is hard for people to understand what I deal with on a daily basis with my medical conditions.  This is a little something that passes around the various communities and through friends who also struggle with their own problems, that helps describe it pretty accurately.

================
"I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.


Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”


================

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory