Dragging Dysautonomia Through My Twenties one Bitchy, Blunt and Belligerent Blog Post at a Time
I’ve had kind of a whirlwind two weeks. A few things I wanted to get out: 1. I heard you, all of you. Clearly there’s a HUGE issue with chronic illness patients finding local support. I’m working on developing a project that’s going to fix that problem. For updates on that, check out the new…
I’m a good person, but sometimes I make bad choices. Like earlier last week when I decided I would dye my hair using boxed dye from CVS in a dark brown when I have never really dyed my hair by myself. I’ve also spent the last four years lightening up my hair with blonde highlights…
Whatever your political stance is today—set it aside for a minute—and CELEBRATE WITH ME! After several stupid months and two rounds of IV antibiotics, 11 days of hospitalization, 2 surgeries— I AM FINALLY INFECTION FREE!!! God bless MY BODY, BABY! I practically danced around the exam room this morning. What great news! I still have…
I’m down to 65 milligrams of Desipramene. My doctor said I’ll probably be at a point soon where the dosage will be so small it won’t matter, that I won’t feel the change in how I feel. But today? Today I feel it. The last three days have been an exercise is extreme patience. Okay…
I have not been having a good week with customer service. It seems like every sandwich I have made and every prescription I need called in somehow gets lost in translation. It’s been really frustrating because there are so many fine details to so many things that should be so simple. I can’t have cheese…
Totally, hysterically crying this morning. I’ve just left a voice message on R.J’s HR person’s phone. I was supposed to be added to his insurance on the 1st, but I never got an ID number. His HR person kept saying, “Oh you’re on the insurance, it’ll show up on the first.” But it never did…
There is a fine line between Gastritis and Gastroparesis. Namely that one will have you bolting for the bathroom–and the other will make you wish you were bolting for the bathroom. The commonality between the two is that they are almost equally as painful as someone pistol-whipping your colon. While it’s entirely normal for me…
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…
[PLEASE READ ENTIRE POST BEFORE SENDING IN RESPONSES] Whether its your children, spouse, relative or friend–if you consider yourself the caregiver of a patient with chronic illness–I’d like to hear from you! I’m looking for caregivers of patients to respond to the following question for inclusion in a book I’m working on (to be published…
Everything was fine–or as fine as you could imagine me being over the course of the last few months. I was still having migraines. But I was having silent ones–ones with no pain, just the annoying symptoms they come with. So when I woke up yesterday I felt fine to drive down the street 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
