Heather,
I do know exactly how you feel, and your frusteration with the insurance not allowing you the care you need.
The condition that I have too, can not be completely understood and I do not have a difinitive diagnosis for myself. They are finally treating the conditions symptoms but not the condition itself. After a barage of every test imaginable, I truly am not one step closer to knowing what I have. For a long time I let not knowing really bother me. I worried that what I had might end up to be life threatening at some point. I worried, would my kids have a chance to have what I had. Was it heriditary??? Many more questions that I could not get answers to.
I finally got a doctor to start treating some of my syptoms a couple of years ago. After 6 months, he up and closed his practice and moved away!!! I went into panic mode!! I had to look for almost 2 months, 2 terribly long months to find another specialist, neurologist that would treat me with narcotic pain medications and other pain and condition medications. One that took my insurance! One that would give me the same medications that I had been on, that gave me back a life again with my family. One that would give me a chance to work again, to walk again, to know what it felt like to really live again!! The frusteration and anger at being in the position of needing these medications to simply life a somewhat normal life again for a change and having no medical professional to step up and hand it back to me. To hand back having a life!!!
All that to say this, DO NOT GIVE UP!!!!! DO NOT GIVE UP!!!!! and in case you did not catch that,
Do Not for any reason decide to Give UP !!!!!
Keep on looking for a doctor that will give you the help and medications you need. Do not accept no for an answer. Make them feel your pain and how it makes you feel. Don't be afraid to get emotional and even cry a few tears in front of them so they can see what you are going through.
Things can and will change, just make sure your determination makes it happen,
Thought and strength to hang on by a thread if needed,
Tpaul