So…this morning I saw the dermatologist. He had lots to say. He decided that nasty rash on my leg is from polymorphic light eruption, or PLE. That can happen with or without lupus. “PLE can occur in all races and skin phototypes and may be more prevalent in skin of colour than in white skin. There is a genetic tendency to PLE, and it is sometimes associated with or confused with photosensitivity due to lupus erythematosus (which generally is more persistent than PLE).”

Therein lies some mystery. Is mineย associated with or confused with photosensitivity due to lupus? The more I read, the more confusing it gets. I’m already on Plaquenil and steroids…which is the treatment for both PLE and lupus. I guess it really doesn’t matter. I’ve had it since I was 13.

And speaking of youngins, Heather has always had dermatographism since she was little. Peter and I used to play tic-tac-toe on her back. We would also write all sorts of things ๐Ÿ˜› You cannot write on me like that, so I did not think I had it. Today the dermatologist addedย dermatographism as one of my new diagnoses. Well….I guess we know who she inherited that from! Sigh….

side of butterfly

Despite years of docs insisting I have a lupus butterfly and not rosacea, because of the pattern of red and white on my face, now I DO have rosacea. That’s what the red spots are near my cheek bones. I think if I saw a dozen docs who were not allowed to read each other’s reports, I would come out with at least a dozen different diagnoses!

keratosis

The permanent red/brown part of my upper chest feels like a combo of papery and lumpy. That’s where the actinic keratosis is.

So…..almost every weird skin thing on me is some form of Seborrheic keratosis. There is the stucco kind on my feet and ankles, actinic on my chest, and if there were names for each type, I already forgot them. He was quick…pointing to this and that and saying what it was. I hate the waxy blobs that get itchy and crumble off when scratched.

red&white

The derm decided to freeze some of the biggest keratoses. It was an interesting feeling…like shooting tiny little pricks of cold into my skin. It made the bad spots white, with a red ring around them. After the doc left the room, I said I was glad it didn’t hurt. His eyebrows arched, he looked at me funny and said most people found it painful and some folks could not tolerate the procedure. It was my turn to be surprised. It just confirms what I have known all along…I have a higher pain tolerance/pain threshold than most. I know that might be hard to believe since I am good at bitching and moaning about things wrong with me, but most people on my support groups depend a lot more on opiates and meds like neurontin than I would ever want to. Those meds make me feel dopey, drugged and stupid. I prefer pain to pain meds 90-something percent of the time. But….you will have to pry my 800 mg Motrins out of my cold, dead hands!

Then there’s the nodule on my leg. He says it’s calcium. He also doesn’t think it’s a coincidence that the calcium surgically removed below my knee, the deep gash in my leg from fat death and the nodule are all in a straight line. His thinking is that perhaps my lipodermatosclerosis was misdiagnosed and it could just all be from scleroderma. Since I have MCTD (mixed connective tissue disease), scleroderma is part of that. GAHHHHH!!!!!!! I don’t know! Should I care? That leg sure does hurt.

Limited Scleroderma

Systemic limited scleroderma affects approximately two-thirds of the systemic population. Although the progression is typically more slow-moving, the disease can still be life-threatening. It is imperative to treat these symptoms and carefully monitor for end-organ damage. Chronic pain, loss of mobility and disfigurement are possible. There is also the potential for serious complications related to the esophagus and other parts of the gastrointestinal tract, as well as pulmonary complications leading in some cases to dangerously high blood pressure. Systemic-limited scleroderma is often referred to as CREST, an acronym for several of the most prominent symptoms:

Calcinosis Hard, painful calcium deposits in the skin
Raynaudโ€™s phenomenon Blanching of feet and hands from white, to blue to red in response to cold or stress
Esophageal dysfunction Problems with swallowing caused by internal scarring. The scarring is caused by the collagen build-up.
Sclerodactyly Tightening of the skin on the fingers and toes, progressing to the hands and face, and sometimes the neck and feet
Telangiecstasia Small red spots on the fingers, palms, forearms, face and lips

I have had scleroderma stuff going on since I was a young woman. Today the derm pointed out all my telangiecstasias. I spent years trying to get other docs to care about them. This guy always surprises me with his wisdom, experience and global knowledge. He specializes in rheumatological skin issues. So…I have been diagnosed with MCTD for decades. This info should not be life-shattering. What bugs me the most is how hard most docs in the university system try to undiagnose everything. This doc has consistently tried to tell the truth and call their bluff. I do not understand why healthcare is so darn adversarial. Is it because my care costs so much money? Is it because I take up too much time? What????

The bright spot of my day was my new bra and new shoes ๐Ÿ™‚ I was amazed at how easy it was to put that bra on….and it was quite comfortable! The sandals were nice because not only do they look good, but I felt no pain wearing them ๐Ÿ™‚ And since I am on a roll here…I wore my new pullover shirt. I like it better than shirts that strain at the buttons because of the hernia. And the shirt went well with one of my new skirts ๐Ÿ™‚ Clothes that fit properly are amazing! Usually I just make-do with what I have. Big difference! Now I need to buy new undergarments. Mine are exceedingly uncomfortable. I have to go get measured again because the hernia has gotten so huge since the last time I was measured. I get my garments custom-made. Same price for off the shelf or custom ๐Ÿ™‚

I never did eat last night. When I woke up this morning, my blood sugar was 85. I took my morning meds, ate 3 prunes and went to the hospital without eating or shooting up insulin. When I got home, I was 136. A few days before, I had done the exact same thing and I was 88 in the morning and 136, hours later after meds and 3 prunes. I thought nothing about me was consistent!

Another new, fantastic thing in my life is using an eye mask to sleep. Wow! People with MG sometimes don’t keep their eyes tightly shut while sleeping. How ironic is that, since the lids are so drooped during the day? I often wake up with one very dry eyeball because it’s partially open while I sleep and sometimes my CPAP mask blows air in my eyes. The last 2 nights I slept deeper than usual and my eyes woke up juicy. Yes! ๐Ÿ™‚

droop face

After being out in the sun and heat while coming home from the hospital, my eye drooped shut, my mouth got crooked and my feet swelled up like balloons. Lovely ๐Ÿ˜›

thisman

I have this neighbor. He is the one who put the wheel back on my old wheelchair. He’s big and goofy. Well, he just loves to talk to me through my window. When he mentioned my swollen feet today, I realized just how much he sees and notices. Yikes! At first it was fun to talk, but now he shows up at my window all hours of the day and night. If I keep the window closed and the blinds are tight, as soon as I open them, he is right there. Hmmmm….I suck at brushing people off or setting good boundaries. I need to figure out how to get him to chill. He says I am his best friend. I regularly talk about my husband so he will get the hint. Nothing seems to discourage him. Sigh….if I ignore him, he just talks to Olive ๐Ÿ™‚

friend

When people walk by or I bump into him outside or in a community space, he says things like he has my phone number and will call. (That will be the day when I give it to him!) Or he says other things so people will think we are sharing something secret and are close. I do enjoy his company for a few minutes daily, but this is getting ridiculous. He thought it was great when I took pics of him in the window. Add a million more sighs…. Why is it so hard to just like a guy as a friend, without them wanting more? Why am I still asking these questions at 60?

shit

 

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