Dragging Dysautonomia Through My Twenties one Bitchy, Blunt and Belligerent Blog Post at a Time
There is no worse a feeling than looking at the dosage on a bottle of medication you’ve been trying to ween off of for a month–and realizing you’ve accidentally been taking twice the amount you had been on in the first place. I went cold and numb ripping open all my bathroom drawers and trying…
It’s around that time of year where sometimes, I’m walking the dog and I think: I’m going to die. I’m literally going to prune up like a raisin in the sun and shrivel out of existence. Because: Florida. And while I contemplate moving out of state, possibly to Antarctica, I’ve realized that I have to…
I’m pretty proud of some of the changes I’ve been able to make since the surgery. I’ve weaned off of many of my medications. I’m now off Prilosec, Pepcid, Percocet, and Allegra completely. I had been taking 75mg of Desipramene (and had been on the medication in an increasing dosage for ten years.) Tonight I’m…
Nothing makes you feel more grown up than finally putting a bed frame around your mattress. We have reached such great heights…from the bedroom floor. The fact that Happy is currently nestled next to me in the remains of my 1997 Disney Hercule’s pink Megera sleeping bag, notwithstanding. Another thing that makes you feel grown…
I’m recovering from throwing the season’s wildest four-year-old poodle’s birthday party. It’s been a hard week trying to meet his expectations and surpass his hopes–but after twelve orange tennis balls, a granola cake, and the help of a few drunk friends: we made the impossible possible. Okay, maybe the six foot high scene setters…
Here’s my latest article from IG Living. It’s a great magazine that you can pick up at your local immunologist’s office or infusion center! You can check them out online here. Getting your regular IVIG infusion can take hours, often with you stuck in a recliner, bored,with nothing to do. Even sub-q infusions at home…
I’m having a major 404 with my port, pretty much since the minute they put it in. Besides the nerve pain that comes with having a surprise chest tube after having a port implanted earlier in the day–comes the obnoxious reality that the port only really works when it feels like it. I’m supposed to…
Ilana Jacqueline
27-Year-Old Patient Advocate, Freelance Writer, and Managing Editor of the blog at The Global Genes Project.
The Book: Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane, Be Your Own Advocate, and Live Your Best Life by New Harbinger coming 2017.
Patient with POTS (Postural Orthostatic Tachycardia Syndrome), Dysautonomia, Hyper-Somnia (suspected Narcolepsy), Gastroparesis, and Primary Immune Deficiency Disease.
Contact: IlanaWrites(@)Gmail.com
