redonface

I called the dermatologist’s office for an appointment and they said to come in this afternoon. There’s a special emergency clinic on Fridays. That was actually fun! I did not get to see my actual dermatologist. I LOVE him. He’s the only doc that cares about my rheumatological symptoms. Turns out the 2 women I saw today were much the same.

First I got a guy nurse who was very nice, then a newbie doc who did the initial exam. She wanted to see my pictures in my medical file on my computer. She was smart! I showed her the pics, and she immediately rattled off each condition….erythromelalgia, angioedema, lipodermatosclerosis, myasthenia gravis, geographic tongue, lupus and even mixed connective tissue disease! My jaw was on the floor. She was even interested in my humongous hernia and the operation that caused it. Yup…..that’s a pretty serious skin problem….see how far it can stretch before I pop.

close-up

Then she brought in the doc who heads the clinic. They said the swollen, rough skinned spot on my face is angioedema. I did not believe them at first. I have had angioedema for decades…but it was always swollen eyelids, hugely swollen lips, swollen face….stuff like that. And every time I ever had angioedema before, it was bilateral and symetrical. This is a strange shape, only on the right side.

Apparently this is what happens after hives just aren’t dramatic enough. This sort of angioedema is basically hives that go deep into the skin. Huh. Who knew? So this giant hive has been getting deeper and bigger on my face 😦 I take generic Zyrtec already. Now they want me to take 4 pills per day. Yikes! If I get worse, I am supposed to quick make an appointment with my usual dermatologist.

I just went to look up my usual dermatologist’s bio. No wonder he worries so much about my rheumatological/autoimmune issues.

***, MD, Professor of Dermatology has specialized expertise in the diagnosis and treatment of skin changes that occur in autoimmune rheumatic (arthritic) diseases like lupus, dermatomyositis, scleroderma, and vasculitis. He is Board certified in Internal Medicine, Dermatology and Dermatologic Immunology, and Diagnostic Laboratory Immunology. Dr. ***’s main focus is patient care, education, and patient-oriented translational clinical research.

Dr. *** is recognized internationally for his clinical expertise and research accomplishments relating to the skin problems experienced by lupus and dermatomyositis patients. He has been listed in Best Doctors of America and America’s Top Doctors and has been elected to several prestigious medical and scientific research societies including the American Society of Clinical Investigation and Association of American Physicians.

I think each time I read his bio, I am impressed all over again. Why can’t he be my everything doc? I like him better than most 🙂 The 2 women docs today were also great.

angioedema hand

Look familiar? This is what angioedema does to hands. Looks like my hands lately.

Guess what a treatment for this sort of angioedema is? IVIg. For the zillionth time….if I was getting regular IVIg, I would not be having all these obnoxious problems! All docs but the idiot Utah neuros think I should be getting IVIg every 3 to 4 weeks. I miss my Vermont neuro!

I am wiped out tired from going up to the hospital and back. Everything hurts. I was too tired to take pics. Wish I could have. Almost every tree has leaves and/or flowers right now. Today felt like the first day of summer. It was 84 degrees at my nearest WeatherBug station. I was hot and sweaty out there. Whew!

Sooooo tired……

Advertisements