What a tiring day!

[Guest guest]

I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the city during rush hour was fun, but not as much fun as getting up early enough to get all my meds and slather itch cream and sunblock all over my body.

Anyway, I really like this doc and he was so smart. I really like smart. He is putting me back on Cellcept, said it should not have been stopped in December....that this whole skin outbreak was a result of that. He is also having me take Plaquenil. I have taken it in the past and had no problems. He was reassuring and kind.

Then this afternoon I saw the Dermatologist and got stitches out of my back. Ouch. He said that I should wear sunblock all day every day and reapply when I went out. But try to stay in rooms with no sun access. When I go out, I am supposed to wear a huge hat....like a Sombrero, he said....so that no sun gets on my face or neck.

Now, let me tell you that I am not going to wear a Sombrero....good grief!!! I am in the pits of humiliation as it is. In a wheelchair, tubes running out of my chest and nose, hair falling out, sores all over and now a Sombrero.

He said that if there was any light coming into a room, it was poison to me. I am extremely allergic to the radiation from the sun. So, not only can I not go out, I cannot even look out. But, I have to get out to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! What a spectacle! At least with my big dark glasses and big hat.....no one will recognize me. Except for the fact that my husband will be there.

So, anytime you feel self conscious because of your 02 tubing, etc. Please know it can get worse.....much worse.

I guess if I wear a Sombrero, I can stop worryng what color my hair is, huh?

Good Grief!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16