I am awfully glad I take pictures of my body doing weird things. I showed this picture to the woman hematologist and she said it was Raynauds. I guess I looked surprised, as my mouth was hung open. She said “you don’t believe me?”. I laughed and told her I believed her since my first diagnosis of Raynauds was in my early teens. I had just never seen my toes THAT red.
What an ordeal! I spent many hours at the hospital. First I was scheduled for blood tests in the cancer center. The woman couldn’t find a vein. I said too bad you can’t use my port. The nurse next to us said she could access it. YES!!! Poking into my port doesn’t even register on my pain scale. She had a quart sized ziplock full of tubes that needed filling, so I was very grateful to be able to use the port. Even when they do hit a vein, it’s often a struggle to fill a couple of vials. No problem with the port. It’s hooked to my jugular.
Also lucky for me, she left the port accessed. After hours with both hematologists, they thought of more tests I needed…and I didn’t need to get poked with a new needle. Whew!
What took so long was they literally had a million questions. I had to give them my entire medical history from birth to now. One of the hematologists thinks I have a genetic immune deficiency and that’s why I have had infections my whole life. A quarter of the people who have that go on to collect autoimmune diseases like I do. That explains why IVIg makes both the MG and MCTD better. There was a lot more to the explanation, but right now I am soooo tired. My brain cells are snoozing.
The second hematologist didn’t say much. He talked mostly about my anemia. They gave me some nifty graphs. The dip down in the first two and the rise in the third are from the hysterectomy and emergency operation.
Just like every doctor lately, they said I have been through a tremendous amount of trauma this year and it will take a long time to heal.
It will be interesting to learn what all the blood tests reveal about me. Want to know what’s particularly distressing to me? I have been developing hundreds of skin bumps that can be itched or peeled off. That has made me think a lot about my aunt who had psoriasis and died of multiple myeloma. The clinic I went to today was named BMT/multiple myeloma. I never got around to mentioning the bumps or my aunt. It gave me the creeps.
They tried to reassure me that it’s the PRACTICE of medicine and all of this autoimmune stuff is complicated. I said I was tired of being practiced on. Of course I was repeatedly told that I have a complicated medical history and am a complex patient. I wanted to scream. I have heard that for years. Sigh…