Nice to meet you, Carol. My name is Anne. Chose the name "alienwife" because my husband is still technically an alien since he has not completed his citizenship yet (doesn't know if he ever will - he is not conviced he should).
I'm sorry to hear about your problems. I am hoping that your doctors can find the answers and get you the help you need. I know how frustrating it can be when they don't know exactly what is wrong and the dilemmas of actually finding out. In your case, if it is autoimmune, you probably won't qualify for a transplant you need . . . in my case, I will never be able to get health insurance (because my employer does not offer it) and my income level is such where I don't qualify for any type of assistance. Not that I am rich, but I don't fall into poverty level, either. Frustrating situation.
I chose the natural route for now because I wanted to see if diet modification and stress management would work for me and it does, for the most part. I am usually tired and aching, but find that if I push beyond the first wall in the mornings, I can usually cope through the rest of the day. This probably contributes to my complete exhaustion collapses on the weekends, but at least that mode of operation helps me to feel like I am at least somewhat normal. My doctor has recommended Plaquenil, but I figured as long as I have the mental, physical and emotional stamina to push through without, I would wait until I was so miserable I had no other choice. I have a TENS unit for the peripheral neuropathy, which helps tremendously and I have a husband to rub aching joints :)
I guess I came here to meet others who were dealing with my type of issues. It's really alienating when you have to explain to people what's wrong . . . my in-laws are not native english speaking. We go to visit them and they simply don't understand that I cannot partake in the European tradition of the all-night party (my brother in-law-got married last year and the reception lasted until 6:00 a.m. - I had to leave at midnight because I was so tired I was ill). They don't understand that I don't want to go on a 20K hike along the coastline through all the little cities. I have great support with my husband, children, mom and boss (who is also one of my best friends now), but it hurts when the other side of your family doesn't understand.
Ah well . . . enough of my moaning. My problems are pretty insignificant compared to others.
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy