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My name is Deanna Brownlee. I’m 35 years old, and I have hypermobile Ehlers Danlos Syndrome (hEDS). What does that mean, exactly?

Updates (38)

September 19, 2021

I finally have updates of my own to share!

On September 16, 2021, I had my second tilt table test at my local hospital. The test was originally scheduled for the 8th, but the hospital was inundated with COVID patients at that point. So the 16th became my new test date. And the test diagnosed me with POTS! It’s a common comorbidity of EDS, and I’ve known for years that I have it. Now I have official confirmation! I immediately called my layer and told her about the POTS and the gastroparesis. I’m hoping this will help my case.

But there’s one hitch: even with health insurance, the test ended up costing me over $700! They told me I had to pay $150 up front, or else they’d cancel the test. They also made me commit to $25 monthly payments after that. My insurance company still has to process the claim, and I’m going to continue to fight this. But it’s looking like I have to spend a certain amount out of pocket before the insurance will start paying for things.

Because I have been so careful with my donations, I was able to “take the hit” and pay the $150. A friend has also promised to help with the $25 monthly payments. And wow am I ever thankful for that, because I am definitely not comfortable spending $25 worth of donations every single month – especially not after having to spend $150 worth of donations in one go.

I also got my 3rd COVID shot. I got it done at my local Walgreens. A friend was nice enough to drive me there, and it was fast and easy. I experienced nothing more than body aches for about a day or so. And I am keeping myself and others safer, which makes it so worth it. But I will continue to wear a mask and take precautions. Two days after my tilt table test at a hospital, I don’t seem to have caught COVID, and I plan to keep it that way.

Next up is my SSA-mandated (and SSA funded) appointment with a psychiatrist on September 30th, because they “need more information.” That happens at 8:30 in the morning. That same night, I have a virtual appointment with my new endocrinologist. I’ve been waiting for that appointment for months, and I wouldn’t miss it for the world. (Note: in my last update, I wrote that the endocrinology appointment is on 11/30/21, but it is actually 9/11/21. I checked the confirmation email.)

I got my POTS diagnosed, and now my goals are twofold: (1) get my Cushing’s diagnosed, and (2) make my donations last as long as possible. I’m going to do the best I can to stretch every penny.

Psych and endocrinology appointment in TWELVE days. The squeaky wheel gets the grease, so to speak. Onto the next adventure!

August 15, 2021

I have been busy going to the doctor lately!

On July 26, just before my health insurance kicked in, I went to the ER at the urging of another immune deficient friend. I was so exhausted I could hardly sit up. Ultimately, I was negative for COVID, the flu, and anything else infectious. All they found was a UTI. The doctor felt like there was more going on, but she couldn’t find it. She gave me fluids and antibiotics and sent me home, and I have since recovered. I have already mailed off my financial assistance application and all documentation. I hope to get through the process without an issue.

On August 10, I used my insurance card for the first time. I saw Dr. Oddis, a local cardiologist. He’s supposed to be really great, and so far, I like him. He agreed to schedule a tilt table test to try and get a POTS diagnosis, and that was that. Because I have health insurance, the visit cost me $5 instead of $470.

On August 11, I traveled to the city to see Dr. Pugliese, my immunologist. Because I now have health insurance, I no longer qualify for the Rare Disease Charitable Foundation benefits. But having health insurance also means that I now qualify for OnePath copay assistance. OnePath accepted me into the program, thankfully. Then, I made an appointment with Dr. Pugliese to see how well my infusions have been working. It’s a good thing I did, because the doctor had to see me in order to complete my enrollment into OnePath. So everything is on track now. My levels look good, and OnePath should have everything they need now.

Next, I have more appointments:

9/8/21: my tilt table test
11/16/21: a follow-up with Dr. Oddis
11/30/21: first appointment with Dr. Friedman, my new endocrinologist
8/3/22: follow-up with Dr. Pugliese, my immunologist, to renew my OnePath enrollment

My goals are to be diagnosed with POTS and Cushing’s disease, add that evidence to my SSI case, and of course make my donations last as long as I can. The CDC has also recommended that immunocompromised patients get a third COVID vaccine, and I am working on that as well.

I recently received a letter from my lawyer stating that she is awaiting a response from the Social Security Administration. With COVID running rampant, there’s no telling how long that could take. All the more reason to stretch every donated cent as far as I possibly can.

That’s all I have to report for now. Thanks for reading!

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Guestbook

November 24, 2020

This woman is a fighter. It’s a damn fucking shame that as Americans we tell people that are chronically ill, that they don’t matter by refusing to give them ssi. This woman had been fighting the good fight for many years and she is one of the people that actually needs it. Good luck, hopefully you’re life can get straightened out soon.

Anonymous

July 9, 2019

She says, "Financial stability and health insurance could be on the horizon for me after 11 years of fighting. I can do this!"

Anonymous