Dragging Dysautonomia Through My Twenties one Bitchy, Blunt and Belligerent Blog Post at a Time
It’s been blogged about 9,010 times. “But you don’t look sick.” Of course not. I look fabulous. Always. A total glamazon–even coming out of the operating room. Just ask my mom and take a look at this glamour shot she took of me in the recovery room for one of my sinus surgeries (and…alright…I had…
(Note: I have not abandoned the effort to do my posts about the wedding, just trying to get some pictures back from the photographer before I go into full-on white roses and linen on you!) My publishing company and I have decided to go a little more in-depth with our patient stories. I am actually…
While my blog usually tells my own stories and advice, I know I’ve got some readers out there with their own advice and stories. Each Wednesday I’m opening up the comments forum to you to share your own stories, advice, Today’s question is: How do you react to family members who refuse to acknowledge that…
Nobody Has to Know Your Business Unless You Tell Them There’s a long list of people you don’t have to talk about your disease with. Your employer is on that list. Legally you don’t have to disclose shit about your disease. And hey—if your illness never has and never will affect your job performance you…
I’m just going to say that I’ve know enough people, in my life, in Boca Raton, rich enough to afford to have one of these chairs and they don’t. Why would you not immediately invest $4,000 into a massage chair if you have that kind of disposal income? huh? WHY? Don’t you know how wonderful…
Another big thank you to the wonderful editors over at IGLiving.com, IG Living Magazine for publishing my newest post on chronic illness for 20-somethings. This month’s column talks verbiage in the form of an Elevator Speech. Kind of like an automatic speech that pops out whenever you get the deer in the headlights look after…
Well basically what happened was that R.J one-upped me by mopping the downstairs while I went to get my car washed. And when I got home, exhausted from my long drive and long wait sitting in an air-conditioned area, I was like–well, I’m the laziest fiance/roommate/wifey ever. But instead of lamenting on my lack of…
1. When there’s an excessively long line at the DMV to get your handicapped placard, and you’re getting a handicapped placard since you can’t stand or walk for long periods of time. 2. When you’re doing an interview on live television and you have to dip out of frame to avoid openly gagging on screen…
I can be bought. I’m a big buyer of stuff. Things. Books. Medications. Food. Sports drinks. Tank tops. Dog toys. And I like to think that, as someone with a background in the marketing industry, I can see the value in good advertising–and the bullshit in bad. You may have noticed that I also do…
I don’t generally go into the long and sordid story of how me and the majority of my family get on with my chronic illness. But what better time to explore how uncomfortable the tea parties with the skeletons who live in my closet go than right around the holiday season? I wouldn’t feel right…
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
