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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 (29)

January 27, 2021

It’s official! I have gastroparesis! I finally had to call W. T. Anderson, leave a voice message for the nurse, wait for the nurse to call me back, then the nurse had to email my doctor. My doctor then finally called me himself and gave me the official diagnosis. I’m still going to deal with the intense pain episodes, but my doctor prescribed Reglan to see if that would help in tandem with two other medications I’m already taking. That should at least help the pain episodes not last as long.

I’ve also been using Retin-A for about two weeks now. My skin is still peeling, and it feels sunburned a lot. But it will be worth it! And I won’t have to deal with Bausch PAP for probably another 6 months to a year however long 3 tubes will last. And when that time comes, I’ll know exactly what they want – a completed application, a Medicaid denial letter, and a zero income letter from my doctor.

As for endocrinology, I did some thinking. At the risk of oversharing, my endocrinologist briefly mentioned a 24-hour urine test during our appointment. When I say “briefly,” I mean that she said the phrase out loud and immediately dismissed the idea, saying that the testing is complicated. But a few days later, I sent her a message and asked if we could still move ahead with the 24-hour urine testing. And she said yes! Now the tricky part is the logistics. I have to go pick up the test kit (which includes a jug) from Quest Diagnostics. Then, as I acquire the, um, samples, I’d have to store them in a refrigerator. My roommates don’t want me to store the samples in the refrigerator that the whole household uses, because that understandably seems a little unsanitary. They’d prefer I get a mini fridge. The timing could also be a little tricky, as my roommates go to bed at 7 pm. But I know I’ll find a way to make it happen. I’m determined to get my next diagnosis!

As for disability, everything is progressing as well as it can. My lawyer sent me a massive packet of information to go through, fill out, and sign. All in all, it totaled around 40 pages. I finished everything, triple checked my work, and had it back in the mailbox, ready to go out by the next day. My lawyer should now have all the completed documents, an impairment letter from my immunologist, impairment documents from my geneticist, impairment documents that I filled out, and now another diagnosis (gastroparesis). I have more documentation than ever this go around, so all I can do now is wait. One person said it would take 120 days, and another said it would take 3 to 5 months or longer because of COVID. I’m going to make every penny I have last as long as I possibly can at this point.

I am also still waiting on 2 utility bills from my roommate in order to renew Care Partners. My yearly enrollment expired on the 22nd, so doctor appointments will have to be on hold until I have everything I need and I can make an appointment with the financial advisor to re-enroll.

Once again, thank you all who have kept up with my story and have reached out to help me in any way. Whether it’s providing me with shelter so that I don’t end up homeless, sending me a supportive message, or donating. I could not have made it this far without you, nor could my journey continue without you. Thank you!

January 15, 2021

More updates are happening!

Still no word on whether or not I have gastroparesis. I thought W. T. Anderson would at least mail me something, but I’ve gotten nothing. I finally just called to ask about it, and I had to leave a voicemail. So I am also waiting on a nurse to call me back.

What else? Ah, the Retin-A. I got the notification that they’ve shipped it. My immunologist wrote a letter for my SSI case, and that letter mentioned that I have no income. Bausch PAP accepted it as the no income letter they wanted, and I should have my hands on it in a week or so.

I also completed an infusion by myself for the first time on Wednesday. It wasn’t easy, but it was doable. One of the needles dislodged because I was moving around too much, but I was able to clamp off the tube relatively quickly. I’ll be infusing by myself from now on, and I’ll get more confident with time.

I had my endocrinology appointment, too. Unfortunately, all the appointment really did was suggest that I’m quickly running out of options. We don’t think it’s PCOS anymore, but we don’t know what it is. And since other testing was normal, a salivary cortisol test probably would be, too, according to my doctor. I need to do the test anyway, but now the doctor is insisting that I get the saliva samples at midnight. I can’t be wandering around in the house while people are trying to sleep, and I can’t stay with friends while I get the samples because of COVID. But it will probably be negative anyway. The next step is to try a low-dose thyroid medication, because “anything is worth a try at this point.” After that, I’ll have to start seeing a dermatologist. So should I just start dermatologist shopping? Specialist appointments are costing me an average of $80 to $118 per visit, so that’s something I’ll have to keep in mind as well. If I do see a dermatologist, I can’t waste time and money on one who can’t help me.

I also reapplied for SSI a fourth time today. I had to call and schedule the phone appointment first, which I did earlier in the week. I went through every question with the phone agent, being as detailed and as truthful as I could. I feel a little more prepared this time. My lawyer said I needed impairment documentation, so I got that from my geneticist AND from my immunologist. I just hope that, when the SSA gets all my medical records, they’ll get those letters, too. I will definitely make phone calls to confirm this. And I have to say that my immunologist’s letter is phenomenal. It breaks down every detail about how the infusions keep me from working. From the preparatory medications to the 2-hour process to the recovery. So I’m thrilled about that. But the phone agent said it could be “3 to 5 months” before I get my initial response, “or longer due to COVID.” It’s a disappointing time frame, but at least I got it done and out of the way as soon as I could.

My main concern right now is renewing Care Partners. This weekend, I’m going to try to find a good time to ask my roommates to sign the documents that Care Partners wants them to sign. I have to approach this just right, because I don’t want to frustrate them. Once that happens, I’ll have to get one of them notarized, then get 2 utility bills from my roommate. Then, I’ll have to make an appointment with the financial advisor to go over everything and hopefully get renewed.

Thank you all who have kept up with my story and have reached out to help me in any way. Whether it’s providing me with shelter so that I don’t end up homeless, sending me a supportive message, or donating. I could not have made it this far without you, nor could my journey continue without you. 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