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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 (23)

November 23, 2020

I have good news to share today! But what a journey it has been just to get me to this point!

As soon as I heard that it would cost $395 to get me to my geneticist, I began frantically (maybe even obsessively) trying to figure out what my options were. Here’s what I did:

1) I posted all over social media in the hopes that someone would help: I posted on Facebook, Instagram, Twitter, and Reddit. I didn’t get any “bites,” unfortunately.
2) I updated my crowdfunding sites, and that includes my campaign page here at Help Hope Live. We’ll get to that in just a minute.
3) I contacted the Patient Assistance Fund (PAF) as well as the Rare Genomics Institute (RGI). The PAF was able to give me two options. The first was an organization that is not accepting new applicants at this time. The second one listed a wrong telephone number, so I contacted them via the online web form instead. I’m not sure how that will play out. I also (tactfully) notified the PAF agent who helped me and let her know that the telephone number she provided is wrong.
4) I do medical surveys when I can, but those don’t pay much at all. The average survey pays $5, and most of the time, by the time I begin the survey, they’ve already filled up their “slots” for my demographic.
5) I added up every penny I had – coins, reimbursements, all of it – and I barely had enough. And that would have left me with nothing indefinitely. Nothing for Christmas, nothing for hygiene products, nothing for medications, no safety net, nothing. So it was looking a little rough!

So today I decided to check my Help Hope Live balance. There’s no “live counter” on the website of any kind, so I decided to just look at the total funds raised instead. It seemed higher than I remember, so I called and verified it. Someone anonymously donated $1,000!! I am feeling so many happy emotions right now! Excitement, joy, surprise elation, and definitely relief, because now I can see my geneticist and get the documentation I need from my SSI case!! This was weighing so heavily on my shoulders, and to have this burden lifted off of me is a feeling like no other. So whoever you are, please know that you’ve made me happier than you could ever know. Thank you so, so SO much!!

My next steps are to email my geneticist and let her know that I can afford my appointment and make sure she’ll see me as an ongoing patient rather than a new one. Then I need to contact a friend of mine on the 30th, who has offered to pick me up when she goes to her nearby appointments. She’ll know exact dates of when she’ll near my doctor’s office on the 30th. I’ll make a appointment for the same day as her, and we can both accomplish our goals. I am really hoping my geneticist has an available appointment for the day I need one. Then, I’ll go to my appointment, and i’ll be able to help with gas and purchase my own lunch. As long as I keep the receipts, Help Hope Live will reimburse me.

This is wonderful. This is amazing! I’ve overcome the biggest part of this hurdle, and I am that much closer to my ultimate goal of winning my SSI case. This really, really makes me happy. Thank you, anonymous donor! Whoever did this, you have done more for me than you could ever imagine. All the endless thank yous in the world are not enough, but I’m still going to say it. Thank you!!

November 19, 2020

Stress has been at an all-time high lately. I’m not even sure where to start first.

Let’s start with the logistical nightmare of cortisol testing. It’s been pretty messy. It might be easier to start from the beginning . . .

1. My doctor orders salivary cortisol testing. I can’t pick up the test kits from my doctor, because they’re 2+ hours away. They told me to pick up the three kits from Quest Diagnostics when I do morning blood work. They are the only lab with financial assistance, so I can’t use any other lab. My doctor refused to mail the test kits directly to me.

2. I eventually go for my morning blood work. Quest is out of kits, and they have to order more. I have to come get them when they come in.

3. The test kits come in. A friend volunteers to take me to pick them up. But I got my days mixed up because of brain fog. So I did some fancy footwork (and some begging . . . and some apologizing!), and Quest mailed the test kits to me.

4. The first day of saliva collection, I followed the directions. But my kits looked different from the one illustrated in the instructions. So I spilled half my first sample. When I put it in the fridge, the tube tipped over, and the rest of the sample spilled out into the bag. This was after calling around and trying to figure out a labeling system. Each tube has to list your name, date of birth, date of collection, and time of collection. It’s impossible to fit that much information onto a small collection tube, and marker or pen could just smudge right off. I eventually decided to measure and cut out little paper labels, A, B, and C, and tape one to each of the three tubes. Then write the corresponding information on a full sheet of paper.

5. I called my doctor and told her how I’d spilled my first sample. She said to just start over with three new test kits. She said she’d send the order to Quest.

6. A few days later, I called my doctor to verify that she’d sent an order for three new test kits to Quest. She hadn’t. But she did so while on the phone with me. Crisis averted.

7. I made it to Quest to pick up the three test kits. Due to miscommunication, they only had one. I have to have all three or nothing at all. They refused to mail them to me. Another tech said she’d get some test kits from Mercer, and then hopefully I can pick them up. They also had some kits on backorder, but it could be months before they get any in, she’d said.
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8. Then, a few days later, Quest called me to let me know that they weren’t able to get any kits from Mercer. I thanked her, and that was the end of that. But I didn’t particularly want to wait for months to get these test kits.

9. I called my doctor’s office and spoke with someone from the lab. They agreed to mail me three test kits for free. This time, I’m armed with a plan for a DIY labeling system, my own (improved) instructions, and a plan to hopefully keep the samples upright in the fridge.

10. Once I have three samples, I have to take a single pill, go back to Quest in the morning, redo blood work, and submit the samples.

Onto the Rare Disease Charitable Foundation and my SCIg.

In order to begin receiving SCIg infusions, I have to have an Epi-Pen on hand in case of emergency. So I had to apply for the Epi-Pen Patient Assistance Program. Both I and my doctor had to fill out portions of the application, which is an undertaking in itself. I can complete my part in minutes, but my doctor can’t just drop everything and spend time on my paperwork. She was also out of the office for a few days, most likely not feeling well. By the time she came back, there was a storm in the area that knocked out all the power. So faxing was impossible until the following Monday. On top of that, Viatris can’t mail the Epi-Pen directly to me. (Mylan is the brand; Viatris is the patient assistance company.) They have to mail it to my doctor, who then has to mail it to me. Phew. As of today, the Epi-Pen is scheduled to arrive at my doctor’s office tomorrow, by the end of the business day. I am hoping they can then overnight it to me, and I can schedule a home nurse for training. Then, SCIg infusions can finally begin. I will be calling my doctor’s office to let them know that it should be there, and to ask them to overnight it to me if they can. It won’t take long to get to me from Atlanta either way.

In the meantime, I had a meeting with my lawyer to discuss my case. The judges believe that I can do “a sit-down job,” only because there is no evidence in my file to the contrary. I basically have a decent file from a diagnostic standpoint, but I need evidence that shows specific impairments. So my lawyer and I discussed it, and we think it’s best that I get that information from my geneticist. Number one because she is so thorough. Number two because it’s time for my yearly follow-up visit anyway. My lawyer will be sending me the paperwork i need s that I know what to ask my geneticist for when I (hopefully) have my follow-up. I’ve already tried a similar route with my W. T. Anderson primary care doctor, and they refused to complete any of the impairment paperwork. I don’t know how well-prepared my endocrinologist and immunologist would be to complete such a task, but I will look into it. I don’t know how impairing a hormone issue would be, but without SCIg, I could see how a deficient immune system could be impairing. SCIg infusions occur weekly, and they take hours to complete. And depending on how a person reacts to them, they can require recovery. And I’ll need to keep up with electrolytes, which aren’t cheap, either.

Either way, I’ve already gotten the process started, and I’m waiting on my geneticist to call me back with more information. The visits are out of pocket, as they do not accept insurance (not that I have insurance!) I remember the follow-up visits being somewhere in the $300 range, but I will double check. They also sometimes charge extra for completion of paperwork. I’m not sure if my immunologist will require a visit or not. She hasn’t yet, even with all the paperwork I’ve thrown at her. But I am now waiting on a response from her via the patient portal.

After this, I can deal with Care Partners renewal, Christmas, POTS, and gastroparesis.

Phew indeed.

Thank you to all who read my updates and remain supportive of my journey. Every penny helps, and I appreciate any and all of it.

I don’t think I have anything else in the way of an update. I guess it was a short one today. 🙂

My biggest relief right now comes from the fact that I’m not “stuck.” I have ideas as to how I can attempt to move forward. As long as I have somewhat of a plan – options and ideas, if you will – I don’t feel as stuck, and I can stave off the burnout just a little longer. But no matter what happens, I will never, ever, ever give up. That is not in my vocabulary. It is not an option. This entire life-altering ordeal has been dragging on for well over a decade, and I honestly couldn’t have made the progress I have without the miracle of donations. They are an oasis in the desert and my candle in the dark. They carry me in a way that defies language and surpasses comprehension. They have helped (and continue to help) me in ways I can’t even begin to articulate.

Thank you!!

Update! So I heard back from my geneticist’s office. I asked about getting my impairments documented. As you will see from the image, I will have to have an in-office visit for that rather than a virtual visit. So I will have to plan transportation, meals while out, possibly helping with gas, etc. The visit will also cost me $395. And it sounds like they would dedicate the visit solely to evaluating my impairments, and the results would be listed in a visit summary. This would avoid my paying for some kind of “special letter,” which would be an extra $225. I can send a screen shot of this email if needed. A response from my immunologist is pending.

Thank you!

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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