Lipedema Awareness Month…blahhhh

June is Lipedema Awareness Month. I’ve been putting a lot of pressure on myself to do special posts, create “content” and “influence”. A year ago I was recovering from my first surgery thinking I would be in great shape for June 2022.

Well, I’m not. I’m not in great shape, I’m not motivated and I’m not healthy. I’ve been sick for almost two weeks, not COVID, but coughing my guts out. (Doctor appt tomorrow) Before that I had a weird chest pain thing so scary that I went to the ER. X-ray, CT scan, blood work, EKG and the best they could come up with was possibly pleurisy. Whatever the hell that is!?! (Also, hence the appointment tomorrow) The trifecta in all of this is my newly diagnosed Chronic Idiopathic Uticaria, triggered by sunlight. So, if I’m in the sun for any real length of time I wake up covered in huge hives. That last for a few days. And are ugly and itchy.

Of all of these things the sun allergy – which my allergist says isn’t a sun allergy really but that the sun is a trigger for the idiopathic hives – so I’m calling it a sun allergy, is the hardest. There is a shot, Xolair, I am going to try for the hives but I can’t do that until my cough is gone.

I love the sun.

I love the beach, I love being tan, even though I know it’s not good for me. The thought of not being able to be in the sun AT ALL FOREVER is so depressing. I can’t fathom living covered up and in probably LIGHT CLOTHES no less. I wear black, all black. That is me! But the black is too hot and I worry it will make things worse.

I’ve been doing what I know when I have a problem – throwing money at it! Searching for UPF rated clothing (eBay!), sunscreen (Target!), hats (Etsy!), protective gloves (Amazon!) and after a partially disastrous time in the stands at my son’s lacrosse game in full sun with a normal umbrella I am now the proud owner of a huge sun protective umbrella (Amazon!)

Fan mode at Lacrosse game. Stupid useless umbrella that didn’t stop the UV rays. Hives in above photos are your fault, dumb umbrella!!!

I went shopping at Duluth Trading Co last weekend, after the disastrous umbrella incident. They actually have a great selection of plus size clothes. And they have several lines that have high UPF rating (like SPF but for fabric). I found a gardening shirt that I REALLY wanted to get in a 3X because that was my usual size but after trying it on the 2X fit much better, so that was a nice raliziation. The whole store was 30% off so the arm sleeves (that FIT!) were a bonus.

3X – too big?!?
Can’t tell from my face but his one is better! 2X FTW!

And I only broke down crying in the fitting room once. I hate that my legs don’t really look any better to me and now after surgeries the left leg is visibly larger than the right. I hate the scars, too. Hopefully things will even out eventually.

I am proud of myself for actually going outside in a short blue and white stripped French terry dress (sun protection brand Ambermoon from QVC) that has me skewing decidedly away from vampire and towards Coastal Grandmother. But my legs were out, just not in the sun!

Coastal Grandmother vibe – achievement unlocked!

I am going to try to be kinder to myself this month. I am aware of my Lipedema. I can influence the other 11 months of the year.

No hives after this lacrosse game! Coolibar shirt (white!!!), gloves, hat and bandana as needed until the sun finally went down. Weird pursed lips thanks to sucking on yet another Ricola to try to stop coughing!

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