Tortured by a Butterfly -- Dermatology and extreme sun reactions

[panda2]

Hi Guys,

Got my Rheumatology letter yesterday, which threw me in multiple directions (and upset me about the breast explant situation again -- but I'll save that for another day). Because forefront on my mind is my Dermatology appt this afternoon.

Yesterday, I provoked 2 bright red, painful burns (in 10 mins) so I could capture pictures and prove it. I got my UV window filters out and lay underneath them, fully clothed, inside, where the sun was shining on the floor and again burned myself up in 10 minutes and had to hop away like a hot potato! Then I spent until 2a.m. researching what they had wanted to diagnose me with last year -- which is Solar Urticaria -- because I'm desperate that they rule out the EPP (type of porphyria) before doing so. Especially since I've taken all the meds for Solar Urticaria (same as mast cell meds) and they are not working. Not to mention the CTD meds not touching this either. Then at 1:50a.m. I found what I was looking for!

"EPP usually has skin pain as the predominant symptom. Solar urticaria always itches." (I do not have itching with the redness.) "...Finally, test results for antinuclear and Ro skin-sensitising antibodies (Ro SSA) will be negative in patients with solar urticaria."

(I am positive ANA and Ro+!!) Bingo! I really hope this means they will test me for this.

And I have decided since this is the 3rd summer I'm entering into this burning hell, that I am also bringing pictures of my quality of life when the sun comes out. Driving sleeves, parasol and hat; using the parasol inside on my sofa; and one with the buff over my chin and face smothered in hat just to take a walk on the local cliffs for 20 mins.

Pleased with myself, I was wrapping up my notes (who am I kidding? my school project!) when I spotted a part about surgery and photosensitivity.

"During surgery, EPP individuals may be at risk of burn injuries to skin and internal organs exposed to the strong lights found in operating theatres."

So... I am clearly seeing this is becoming an enormous pandora's box. What a lot I have a lot to accomplish today at Dermatology!! Hmmm...I wonder why I feel like I must accomplish it, instead of the consultants...? Probably because they are taking forever with MY life!

Thanks for joining me all. ; )

Panda

[panda2]

I got the porphyrias blood test done! Apparently the Rheumatologist and the Neurologist requested it! All that worry that I had to convince them myself was for nothing! Though I am glad I knew that it needed to be a blood test and not urine. Because the Dermatologist said 'Just urine'. In panic I looked to the jr doc, who I'd already said that it should be straightforward since it's just a blood test, as the urine will always show normal for EPP porphyria. She quickly went on her screen and flagged it up to the Dermatologist, who waved it off as if she knew this all along. Phew.

Although then the blood test itself was torture by butterfly... 7 different nurses -- 7!!-- had to come in to try and find a vein (with copious packs of butterfly needles) in my one arm, back of hand. I have only one arm to use for blood due to lymphedema risk on the other and my veins are pretty shot from chemo. Nurses always get skittish when they know this. We had 7 goes to no avail with the kindest of nurses. Then the Dermatologist herself came in, "What's all this? I'll do it. Give me a syringe!" Now I was the skittish one! 4 tries and a half hour later, much to my complete embarrassment, she did manage to get blood from stone -- my foot. And we bonded a little bit... : )

The result will take a couple weeks. Then if we've got nothing, which is probably going to be the case, since this EPP porphyria is unbelievably rare and is even more rare in adults, I am to be the case at the 'Monday table', where there are lots of brains apparently. I will also get referred to a light clinic, to discover which light rays are affecting me so I can find a way to manage my life. She said I would probably have to get UV films for windows and seemed dubious when I said I had them already and they didn't work. I so hate the needing to prove things part of what is happening to us.

As far as surgery goes, this could be a problem. And this was sobering. I will need the light test to know if their strong lights will burn me in the same way the sun does. So things seem farther off, particularly since the referral hasn't happened yet for the light clinic. But things are also moving too.

Thanks for reading. ; )

Panda x