How to deal when you have a rare disease?

I was diagnosed with PVNS and have had 2 knee surgeries. I'm in pain 24/7 and my life seems to be nothing but pain pills and doctors appts. I'm just wearing very thin from this lifestyle. I am exhausted. I just dont know how to hang on anymore. No one understands what I'm going through..... So how do you deal with a rare disease?

My life is also one of many doctors, many diseases and disorders, for many years now. I thought I was the only one nearing the end of my rope as far as having to see doctors, take medications and basically, wait for my demise.
But I'll tell you what keeps me fighting so I haven't given up:

1. Concerning Pain: I do not tolerate pain well. It is exhausing to fight, and makes me extremely irritable.
I found out that certain antidepressants (Celexa or Cymbalta) are prescribed for chronic pain "off label".
I am taking Celexa (the generic is called Citalopram), and it has helped. It's not a miracle cure, but it helps alot.

2. I have one family doctor and 7 specialists I have to see.
When they tell me "I'll see you in a month"...sometimes I ask if I can stretch that to two months....or 3 or 4, depending on what condition is being treated...so sometimes I get a week where I don't have to see any doctor. If you can do this without jeopardizing your life, I suggest it.

3..Family/Friends: They may not understand what you are going through at all (mine don't), but you have a purpose in their lives, even if it is just in "being". It makes me want to continue fighting to be with them.

4. My faith in God. I offer up my sufferings to God. Some people share their joys and little happinesses to God. But I have suffering, frustrations and aloneness, so I offer them to . Him. I believe (was taught) that this practice brings spiritual blessing to myself and others. He often answers my prayers "yes" for everything I ask for, except for health.

5. If I really start feeing low, I meditate on those people that have quadriplegia. They can't move nothing but their heads. To me, it is the worst of all possible lives. It makes me feel that my burdens are not as heavy. But for you, another condition (years of blindness? deafness?) may work better as a meditation. It is very individual.

6. I believe I have done all I can to try to alleviate my chronic conditions. There came a point in time after getting each condition that I had to accept it. The younger I was (polio at 2 years old, diabetes at 11) , the easier it was to accept the condition. The older I got, the acceptance of what I had to live with took longer, and was harder to do. But it wasn't impossible.

7. It OK to gripe about your health conditions every once in a while. (Even to God, who is the only one who understands your pain completely, besides you ) So let it rip!