Anyone out there living with primary autoimmune myelofibrosis?

I was finally diagnosed with autoimmune myelofibrosis by the Mayo Clinic, which is a truly amazing place to get diagnosis and treatment. Doctors in my hometown could not come up with anything for many many months so being accepted by the Mayo Clinic was a God send. Fortunately, my disease is not the cancerous type of myelofibrosis. The doctor I see at Mayo told me I am only the 3rd patient she has treated with this disease and the Mayo Clinic overall has only seen 22 cases. Apparently the criteria for having autoimmune myelofibrosis is being a woman in your 40s. I had just turned 40 the year I was diagnosed so happy birthday to me *sarcasm intended*.

That is all well and good, but the effects of having this are so debilitating. Maybe I'm just a wuss but being constantly out of breathe completing ordinary tasks, feeling dizzy at times if my hemoglobin gets low enough (which it does) and having to go in and get blood transfusions every week or two due to the low hemoglobin is just exhausting. I am also a very hard stick and the vein finder often comes out. I usually get poked 3-4x by 2-3 different nurses before a good vein is found.

I also have a heart rhythm condition called Long QT Syndrome which I found out about after surviving 3 cardiac arrests at the age of 22. This of course caused an anoxic brain injury, which took years to recover from. Just when I thought my life could begin again, I got diagnosed with bipolar I disorder which meant playing what I like to call "the medication game." Due to Long QT Syndrome, there are so many medications that I cannot take which only complicated the matter.

I am doing a lot of complaining, but at what point do you just want to say enough is enough?! On the other side, I am aware and know there are so many people out there who are struggling with medical conditions so much worse than mine and I applaud you and wish you the very very best