Cyber monday with chronic illness

Some people use cyber Monday sales to buy Christmas presents. I took advantage of the cyber Monday sale at @medicalertfoundation to get two Medic Alert bracelets, as even just the highlights wouldn’t fit on one. My #mastcellactivationsyndrome has been bad, and I’ve been having multiple #anaphylaxis episodes a week. It turns out I have become highly sensitive to most scents and perfumes. It’s why you’ll see me wearing a #vogmask all the time. If you can remember not to wear scents around me, I’d really appreciate it! I’ve already been through 15 #epipen so far, and have too many holes in my legs… 😜 Love you all! 💜💜💜

More ER Woes

I don’t get the point of EpiPens. If you use one and it breaks your symptoms, when you get to the ER they call it a minor allergic reaction. It doesn’t matter that my tongue felt like it was swelling and my chest getting tight right before I used the pen. I started becoming out of it and lost my speech again in the ER, and they simultaneously told me a third dose of epinephrine wasn’t indicated, but that I should also have three epipens at home so I can treat it myself there. That wasn’t the only time they contradicted themselves. They tried to get me an ambulance to take me home because I could barely move, but told me I would have to pay as it wasn’t medically necessary. This is how ERs and the American industrial medical establishment is killing us young women with rare chronic illnesses like ehlers danlos and mast cell activation syndrome. At least I’m home now. I’m never going to Denver Health again.

ER with MCAS

In the ER again. I’m going to have to educate them about anaphylaxis. They thought three doses of epinephrine 20 minutes apart would give me a heart attack. It takes that many to break the cycle (and epi is out of your system in about 15 minutes). Mast cell activation syndrome can give you weird allergy symptoms (especially with dysautonomia) that don’t respond normally. Many doctors don’t know about it because it’s a relatively new diagnosis. It didn’t even exist when I was in med school a decade ago.

TPN Anniversary

One year ago today, I started TPN (IV nutrition). At the time, I had only been getting about 600 calories a day, between the little I could still eat and the formula I was getting constantly through my J tube. Within two weeks of starting, I couldn’t even get the 600 calories and became fully TPN dependent. It hasn’t always been easy, but it’s kept me alive for a year now. In that year, I have only been able to eat three eggs (for a medical test), two small pieces of potato chips, and a piece of tofu, none of which went well. I eat a ton of skittles and jelly beans, but only because they easily drain out of my stomach through my G tube. At least I’m alive and still causing trouble. In other news my SSDI hearing was delayed until January, so I have to wait even longer to get my neck (and speech) fixed. It’s only been three years since I applied.