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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 (16)

July 3, 2020

On July 1, I had my first appointment with my new endocrinologist. It was $120, and I made arrangements to pay for the appointment after it was over, not before. So that of course makes things easier. My endocrinologist was very kind and thorough, and she asked lots of questions. I told her I have financial assistance with Quest Diagnostics and encouraged her to order as many blood tests as she wanted. And she definitely did. I don’t remember how many, but she did fire off an entire list. She also had a tough time pinpointing the exact issue I’m having, but she flipped between “PCOS” and “a PCOS-like syndrome” throughout the appointment. Five of my symptoms suggest PCOS, but I’m missing some of its hallmark symptoms. Either way, I’ve already told my SSI lawyer and sent her the medical release paperwork so that she can acquire the documentation. I am also getting the blood work done on July 9th, so maybe that will offer some symptom clarity.

On July 13, I will have a follow-up appointment with immunology. This appointment will cost about $75. For this appointment, I am hoping for news about IVIG infusion therapy. If my immunologist has somehow found a way to fund it, I will have to over-hydrate myself to stave off side effects from the treatment. This comes in the form of electrolytes. I’ll have to drink about a gallon the day before, a gallon the day of, and a gallon the day after infusion. Amazon has a large tub of electrolyte powder for $30, and I can purchase an inexpensive gallon-sized pitcher to make a gallon at a time.

At this point, my main financial goal is to make my most recent donations last as long as humanly possible. For every medication refill and doctor appointment, I submit paperwork for a HelpHopeLive reimbursement, which I then reinvest into more refills and appointments.

I also have to start thinking about what else I want to try getting diagnosed next. Mental health is off the table, as I need a psychiatric facility that offers both virtual and indigent care. There are only two facilities in my area that almost fit the bill. One is indigent and virtual, but offers counseling only, which would not yield any diagnoses and thus would not help my SSI case. The other offers psychiatry and indigent care, but is not virtual. So that leaves me with physical diagnoses. I’m not 100% sure what I’d like to diagnose next. I’ve already got EDS, immune deficiency, and PCOS under my belt. But there’s more going on. Exploring gastroparesis would require a gastric emptying study, and I’m not sure how much that would cost out of pocket. Exploring POTS would require a tilt table test, and possible travel out of state. I’m a complicated case (as is typical for me), so I’d need an experienced POTS expert. There’s a great one in Alabama, but I’m not sure how to plan that. Exploring MCAD may be feasible, since I can ask my immunologist at my next appointment. But there’s still just a lot to do. I’m going to just do everything I can to amass as much medical evidence as I possibly can. The SSA recently granted me more time on my appeal, so I at least have that on my side. For now, I just want to be able to pay for it all.

Thank you for listening to my rambling! I will always appreciate those who donate, read, and support. My fight has been dragging on since 2008, and it’s far from over. But I am able to keep going thanks to the kindness of others.

I wanted to wait until my next appointment to update, but I couldn’t hold it all in. Even a preliminary diagnosis is a huge deal. I’ll let my hands rest for ten days, then update again. Even though my hands struggle with typing, I hope people enjoy reading my updates as much as I enjoy writing them.

Thanks again for reading . . . and for all the help!

June 6, 2020

Two days ago, I had my second appointment with my new immunologist. It was a virtual appointment, so I saw my doctor from the comfort of my bed. It was really nice!

The other great part of my appointment is that I got my diagnosis! My new immunologist was the only one who had the awareness to figure out that the lab got my blood work mixed up. She also completed my vaccine challenge even though my second immunologist said not to. And just like that, I got a diagnosis.

A vaccine challenge is when you get baseline blood work to check the usual levels of your immune system. You then recheck those levels after a vaccine. A vaccine injects you with tiny, weak disease cells. A healthy immune system learns to fight them off, and you don’t get sick. About half of my levels didn’t change. So my immune system didn’t learn to fight them off.

Based on the lack of change she saw, my immunologist diagnosed me with a Primary Immune Deficiency disease called Immunoglobulin G Subclass Immunodeficiency. It only took 2 years to get this diagnosis. I must be getting pretty fast!

This disease is not like HIV and AIDS. Those are illnesses that you acquire from specific sources. Primary Immune Deficiency diseases like mine are present from the time you’re born.

So what exactly does it mean to have Immunoglobulin G Subclass Immunodeficiency? Imagine an umbrella with its segments. Its job is to protect you from the rain. One of my segments is mostly missing. The rest of the segments are there, but they have lots of holes in them. So the rain still soaks me.

The treatment is IVIG infusion therapy. This means that I have to inject plasma (a part of blood) into my body for 4 to 6 hours every week. my immunologist has ordered SubQ infusions so that I can do them at home. No scrambling to figure out transportation and asking others to completely rearrange their schedule.

Infusions cost more than $3,000 per session. Dr. Pugliese’s staff have already started the process of looking for financial assistance options, if there are any. There are financial assistance options for each infusion brand, but they generally require someone to have health insurance. My doctor is sending me some paperwork in the mail to sign and return. Once that happens, they’ll know more about my options. I have also been researching other potential options as welI.

The thing with infusions is that they cause horrendous headaches. The best way to combat this is to over-hydrate the day before, the day of, and the day after infusions. Electrolyte products with sodium, magnesium and potassium would be ideal for this, as water will only flush my electrolytes out faster. This would include things like NormaLyte, Body Armor Lyte, Walmart brand electrolyte drink mixes, Lyf WTR, Essentia brand water, and the like. Powerade and Gatorade tend to be high in sugar and not the most potent out of all the options out there. With an SSI income, it will be easier to keep these products on hand in preparation for infusions. For now, I am working closely with HelpHopeLive to make my remaining finances last as long as they possibly can. I have no idea how much longer I’ll be fighting for SSI, so I need to make my remaining funds last as long as humanly possible.

I have emailed my SSI lawyer, too. Having this extra diagnosis will certainly strengthen my SSI case, but there are no guarantees. I once read about a man with a traumatic brain injury who still got denied! I just have to have confidence that my lawyer will continue to do what she does best. If I do win my case, however, it would open some doors and expedite my access to IVIG infusions and other treatments.

I always knew there was something wrong with my immune system. As a kid, I missed a lot of school because I was always sick. As an adult, I’m always getting something . . . constant, horrendous bronchitis, shingles, gastrointestinal infections, eye infections, ear infections, whatever that 3-month-long mysterious infection was . . . THIS is why. It was me who had the awareness in the first place to pursue a diagnosis, and my current immunologist who finally diagnosed me. My first immunologist said it was just a runny nose. My second immunologist didn’t know what else to do for me. But I fought for an appointment with my current immunologist for months, and I got it. And now I have my diagnosis. It took 2 years, 4 doctors, plenty of blood, sweat and tears, and of course, donations. And I finally did it.

Thank you to all who have donated and made this week possible. My unfavorable hearing decision left me feeling absolutely shattered, and these recent events have really renewed my confidence.

I might post an update once I get my first infusion done. I have an in-office appointment with my new immunologist on the 16th, so I’ll know more then. One last thing to note: I already had most of this update typed up elsewhere. So I was able to just copy and paste most of it, which somewhat salvaged my hands, thankfully!

Thank you all for reading!

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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!"

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