Category Archives: Life

My life.

Update after almost a year; still alive :)

Not much to report – EDS is the same; POTS is worse. Luckily the Vanderbilt Autonomic Clinic is local and I’ve been able to donate my body to science while I’m still alive.

I still keep on eye on new EDS and POTS research but mostly post at Twitter @Jilly since it requires less effort than logging in here etc.

If anyone is still reading here, I hope you all have a great holiday season with loads of salt. 🙂

Chemistry Cat Sodium Joke


Life sure is weird.

Timeline of my adulthood. Started working as a kid in parent’s business.

Age 17-23 playing bass in bands in Detroit. Photography student, auto mechanic student before that.

24-29 Wife, English major at a HBCU while working 3 part-time jobs (photographer, bookstore clerk, webmaster, grocery store cashier)

30-32 Wife, grad school (Information Sciences), grad assistant.

33-39 Wife,  professional geek. Grad school again (MFA). Poet.

40-44 ? Sick person.

I was an ambitious person so I got to do a lot before my body started falling apart, so I’m lucky.

109F in the shade

Holey moley it’s been hot here. Hottest ever recorded, as a matter of fact. 109!! ::eek:: It’s not like I live in a desert, either. 22% to 30% humidity. And we’re in a drought so there is a ban on using outdoor grills. Which I use a lot because it keeps the heat out of the house. I have 2 heads of cauliflower that I was going to roast on the grill so I figure out alternate plans tomorrow. NOT turning on the oven. :/

My cooling vest seems to have arrived just in time. I’m going to try to wear it to Mass tomorrow.

Polar Products gives POTS folks a 10% discount via the code POTS10 at checkout. I don’t get a kickback or anything by posting that link.

An investment to be sure, but I think it’s saved me from an ER visit, which would be more expensive….which reminds me, I got my Medicare booklet in the mail this week. My coverage starts in Oct. It’s all very confusing and I’m an overly-educated person. The pain clinic already told me that they don’t take Medicare. I wonder if they meant Medigap or Medicare Advantage plans too? I have a feeling I’m going to be on the phone a lot next week.

SSDI Approved

My social security disability was approved. I don’t know if it is because of the Ehlers Danlos or the Postural Orthostatic Tachycardia yet.

It was on the first try, without a lawyer. I applied last year but it was rejected administratively (missing paperwork in the mail). So I reapplied in September 2011.

I haven’t gotten the approval letter but my US Rep. was watching my application at my request & she had sent a letter a wk or 2 ago saying the local disability board recommended it be approved. I got a password from SS in the mail today so checked my online account & it has my monthly payment amount, so…

I made sure I had a copy of my medical records so I knew what was in them. I also traveled to see Dr Francomano for a 2nd opinion & had her records. I am a patient at Vandy’s autonomic clinic so their records were in there as well.

I included some journal articles since these are both rare and not on their list of conditions:

Quality of life in patients with postural tachycardia syndrome.
link [pdf]

Fatigue Is a Frequent and Clinically Relevant Problem in Ehlers-Danlos Syndrome


and the NIH info for my type of EDS

I applied online and faxed info to my local SS office. (After the missing mailed paperwork fiasco). I had extra copies of my medical records, which helped because the office had trouble getting some info for some reason so I just faxed it.

Ehlers Danlos & POTS links Feb 11

This story is horrifying: Amanda Trujillo, a nurse in Arizona, was fired for educating a transplant patient about the patient’s post-surgical treatment and on non-surgical options like palliative care. I guess her license was taken away after the surgeon pitched a titty-fit. She was also ordered by the Arizona State Board of Nursing to have a psych evaluation because she participated in social media on the Internet.

I’m not a nurse, obviously, but I was raised by them in a hospital for the first 6 months of my life and have tons of respect and gratitude for them. And as an ill person, I appreciate that nurses like Ms. Trujillo advocate for patients and inform us about treatment choices.


I’m having a heck of a time with Vanderbilt Medical Center this week – billing double-charged my debit card for 3 different bills (over $700) and they say it may take up to 4 to 6 weeks to put the money back in my checking account. Plus, I don’t even think I had an EMG in the first place.

I’m disabled & waiting on my SSDI application so $700 is a lot of $$$.


I use some acronyms here:

EDS = Ehlers-Danlos syndrome, a genetic connective tissue disorder

POTS = Postural Orthostatic Tachycardia syndrome, a form of dysautonomia (autonomic nervous system disorder).

Ehlers Danlos & POTS links 09/13/11

My dad died. Here’s his obituary

(I never told my parents that I was diagnosed with genetic maladies; they were old and it would have just made them feel shitty. What would have been the point?)

Anyway, it has been a rough month.

POTS & Flying and Las Vegas Trip Review Part Three

read Part Two

I was very happy to make it to my room and crash for some post-POTS-episode sleep. My room at The Flamingo was kind of worn but it was alright. It would have been nice if there was a in-room coffee maker. The bed was comfortable, and I could get around with my cane OK, since there was a lot of room.

After I woke up, I met up with my sister and brother-in-law (YAY!) and I found out they had a much different check-in experience. A long wait (room not ready) & no blankets on their bed.

The wedding was really nice, and it was great to see family. A nice celebration of love. 🙂

After the wedding my sister and I played some slots and watched the royal wedding on a TV in the casino bar. It was a trip – church and prayers and in the background, slot machines. Then the next day I got my hair cut at the salon at the Flamingo and I love it. I’ve been growing my hair out, to donate, for a few years.

On the way back I wore my cincher / garter belt on the plane and I didn’t have a problem. It’s well-made and works better than an abdominal binder for me because it is tighter.

The person who was pushing my wheelchair on the way to the gate was going to put me through the nude-o-scope at the TSA checkpoint & I just said “I’m not going through that thing; I opt out” so I walked through the x-ray machine no problem.


POTS & Flying and Las Vegas Trip Review Part Two

Part One

The paramedics met the plane and took me onto the ramp thing you walk onto to get on the plane. There were also a Southwest Air manager and other people – CYA folks I guess. This was the first time I’ve flown Southwest in about 20 years I think and the air crew were very nice and professional through the whole thing.

Anyway, the paramedics checked me out while the rest of the passengers deplaned, and recommended that I go to the hospital. I refused – the ER would just give me some IV fluids. I promised the paramedics that I’d stay hydrated while in Las Vegas (desert!) and signed some release forms. The Southwest manager told me I’d have to get a Dr note to be allowed to fly home on my return trip. The paramedics said that the airport has a clinic, and to show up early for my flight & the Dr there could give me the release. I signed the CYA forms for the paramedics and for the Southwest manager and told her the flight crew did a good job.

My wheelchair assistance from Southwest (which I have to request now to get through airports) was waiting for me at the end of the ramp and took me to get my bag from baggage claim and to get my taxi to the Flamingo.

This is my 3rd or 4th trip to Vegas and the last time I was there was in 2001 for COMDEX, I think. My first impressions, looking out the cab windows, was WOW Brown! (we live in the woods) and OOH Palm Trees! and that things seemed pretty much the same, on the outside, as the trip 10 years before.

Usually I would stay at The Sahara. I liked it because it was cheap but clean, had good service, and most importantly, it had Old Vegas history. It was built in the early 1950’s and is where the Rat Pack performed, plus Marlene Dietrich, Louis Prima & Keeley Smith, etc. Also where Ocean’s Eleven (the ORIGINAL) was filmed. 🙂 This time I wanted to be closer to where my nephew’s wedding was being held & my sister wanted to stay at the Flamingo (we had good luck there before on slots) so I stayed at The Flamingo, down the hall from my sister and brother-in-law.

During the cab ride I grabbed one of those free what’s going on in Vegas coupon magazines, and saw that The Sahara is closing next month! Noooooo! 😦 😦 😦 Wah. After a few minutes, I was already on The Strip at The Flamingo. The check in process was pretty quick and the desk clerk, Dennis, was very polite and gave good customer service.

…to be continued….

POTS & Flying and Las Vegas Trip Review Part One

The last time I flew, I wore an abdominal binder, because flying with postural tachycardia syndrome can be tricky. That flight went OK. But because I was wearing the binder, the TSA took me to a clear plexiglass room between the 2 x-ray lanes and I had to be frisked and lift up my shirt, etc. While my meds and laptop sat on the end of the xray conveyer belt unattended. (This was a few months before the TSA groping policy came into play.)

I chose not to wear my abdominal binder on this trip out to Las Vegas because of that previous TSA experience. Mistake.

About 2 hours into the flight my POTS symptoms kicked in – they feel a lot like a panic attack but are triggered by the air pressure changes/orthostatic changes. Tachycardia, amped up pain level, shaky, kind of an out of body feeling, hands getting numb. I asked the flight attendant for oxygen & he set that up for me & made an “Is there a doctor on board?” announcement. Normally I would have been mortified x 10 but I was feeling so shitty I didn’t care. A doctor from Centennial in Nashville can forward and helped out as did a nurse named Kim from Vanderbilt. They were very nice & both worked in nephrology. The Dr told me to have some bloody mary mix & I drank several.

Before I knew it, it was time to land and be met at the gate by the paramedics.

…to be continued….