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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 (20)

September 19, 2020

Big news today! No, I haven’t won my SSI case – yet!

As you may know, my doctor prescribed GammaGard infusions, but they’re $1,300 each without insurance. And this is weekly for life. The GammaGard OnePath program offers financial assistance, but you have to have health insurance in order to qualify. The same goes for all SCIg brands except one, and my doctor does not prescribe that brand. My doctor enrolled me in OnePath anyway and hoped for the best. That was months ago.

And today, I finally got a phone call from a OnePath coordinator. She somehow tracked down the Rare Disease Charitable Foundation (RDCF). RDCF helps immune deficient patients gain access to IVIG and SCIg until they can get health insurance. After a few brief phone calls, the coordinator forwarded my information to RCDF. They’ll call me next week to let me know if they accepted me into the program, and for how long. It’s going to be an anxious wait all weekend!

RDCF is a private charity, so they have no website or public contact information. Because of that, there’s no way I would have ever known about RDCF, even with my resourcefulness. The OnePath coordinator just went the extra mile for me, dug deep, and did not give up until she found something that could potentially work. And for that, I will always be grateful.

I also spoke with a nurse educator that same day. She explained how everything will work and answered all of my questions. If accepted into the program, a nurse will come to my house each week to teach me how to do my infusions. For each “lesson,” I’ll try a little more of the process until I can do all the steps completely on my own. I also started watching a few “tutorial” YouTube videos. I like this one a lot:
www.youtube.com

Because this is an indigent program, all my medical supplies – the GammaGuard, pump, spikes, tubing, adhesive tape, gauze, syringes, needle, etc. – will be mailed to me each week. All for free. Free is a lot better than $3,100 a week for life! And I don’t think this will hurt my SSI case. RDCF helps patients until they can get health insurance coverage, not for the rest of their lives.

The nurse also let me know that there are a few “non-medical” supplies I should purchase to make this process easier. I’m so excited about all of this that I made an Amazon Wish List. Donations would certainly help with the cost of these items:

1) SCIg therapy journal – helps me keep track of symptoms, systemic or localized reactions, dosing, etc., and thus treat my immune efficiency as efficiently as possible.

2) Serving tray – I need a flat working surface that I can quickly sanitize where I can lay out my supplies and assemble everything without it rolling away or getting lost somewhere. If I infuse on my bed, I won’t have an available surface. I also sit “criss cross applesauce” to avoid discomfort. So my supplies would roll everywhere. If I infuse in the living room on the couch, I’d still have to use my lap. Our coffee table doesn’t have any open space left on it, and we don’t have end tables.

3) Pink travel bag – when I stay overnight or over the weekend at a friend’s house, or I travel for a doctor’s appointment, I want to be able to securely carry my IVIG supplies without items rolling around or breaking, caps coming loose, packages getting punctured, the bag getting tossed around, etc. The travel bag I chose has lots of storage for larger supplies, and smaller compartments for the smaller items. And I can wear it over my shoulder securely. And it’s pink.

4) Electrolytes! – I can never have too many electrolytes. In order to stave off the notoriously terrible headaches from SCIg, I have to over-hydrate. Water just makes me eliminate electrolytes out of my body even faster, and Powerades and Gatorades only have a bit of sodium and sugar. I need to hydrate with 32 ounces of fluid the day before, 32 ounces the day of, and 32 ounces the day after. And the fluids have to contain sodium, potassium, and magnesium. I can mix large batches with the electrolytes I chose, and it has the ingredients I need. I also need electrolytes even when I’m not infusing because of POTS symptoms. So the bigger container just works.

5) Pink water bottle – It’s exactly 32 ounces, so I could mix up a batch each day and be done. I like the carrying loop, and I love the color. The lid is also more sanitary (they call it “yuck-free”), which works well for my immune deficiency.

6) Benadryl and Tylenol – a retired nurse friend, who is an IVIg patient, reminded me that Benadryl and Tylenol, taken before infusion, can further help stave off the bad headaches.

If the Rare Disease Charitable Foundation accepts me into the program, I would love it if someone could help me with these supplies. I really hope that’s not asking too much of anyone. I will definitely update as soon as I hear anything.

I have also established myself as a patient at the indigent mental health clinic. I got through the intake process, the nurse’s appointment, and the first doctor appointment. Now I can have all my appointments over the phone, which is a huge relief. I also got the process started for working with a case worker. A case worker can help me with small trips, like picking up medication refills or a quick shopping trip. Accomplishing something like that normally takes days of planning – if I can make it happen at all. A case worker can also help me navigate the crazy world of indigence, walk me through assistance programs, and possibly introduce me to additional resources. I should be hearing from my case worker some time next week.

I’ve been dealing with a lot of pain flares, frustration, sleepless nights, and dead ends lately. It’s such a relief when I take a big step in the right direction!

My hands are telling me it’s time to stop, so as always, thank you so much for reading. I look forward to posting more updates as they happen!

September 19, 2020

Let’s start with the endocrinology craziness. During my last update, you read that I ultimately decided to just stick with the endocrinologist I have now. There’s no guarantee that any of the endocrinologists I see will be better than my current provider, and I don’t want to just throw my funds around. I’ll revisit the other endocrinologists I found if and when I need to. But for now, I’m just going to stay with the one I have now. When I sent her a message and let her know that the medication she prescribed gave me terrible fatigue and made my symptoms worse, she at least pulled me off the medication, suggesting that it made me hypoglycemic. This medication was responsible for that whole “laser beam” effect, too. She didn’t know why it made my symptoms worse, though. But maybe at my next follow-up in October, I’ll know more.

There was one interesting outcome from my appointment with endocrinologist #2, though. She tested my Vitamin D, and it was extremely low. My levels were a whopping 7. Yes, seven. I did some research, and apparently, that’s common with immune deficiency patients. Vitamins won’t cure immune deficiency, and I still need IVIG. But having the right levels can make each infectious battle a little less grueling. I actually had some money left over on an Amazon gift card from my birthday, and I found some vitamins that were both the 5,000 IU strength I need and the gummy formula that I wanted. If I’m going to add another pill to my regimen, I didn’t want it to “feel” like medication. So I found a great brand, and I’ll need to keep replenishing it, but I’ll have to cross that bridge when I get to it.

As for the gastroenterology mess, nothing has really changed there, either. The nurse never called me back and gave me a date for my endoscopy. I guess they’re not doing surgery right now due to COVID. And that’s honestly a shame, because my attacks are getting worse and worse. They are torture some nights, and I can’t sleep because it hurts to much for my stomach to touch the mattress. When the pain is that bad, I can’t think, I can’t breathe, and I can’t even cry, because the changes in my breathing hurt too much. I honestly just want to know what’s wrong and treat it if I can. I’m sure I need a gastric emptying study (and whatever other tests they do), but that will have to be more of a long-term goal right now. All I can do at this point is just try not to run out of pain medication.

As for immunology, my doctor still has not found a way to give me access to the weekly IVIG I need, which would be $1,300 per infusion, plus the cost of electrolytes. Every single brand of IVIG has financial assistance . . . but they all require health insurance. All of them except one brand, which my doctor does not offer. IVIG therapy can cause notoriously terrible headaches, so you have to over-hydrate the day before, the day of, and the day after in order to try and prevent them. Water will just make me eliminate my electrolytes faster, so I’ll need an actual electrolyte product with potassium, magnesium, and sodium in it. Those aren’t cheap, either. So I’m hoping that this road block will actually help my case, because I cannot access this treatment without Medicaid and SSI.

And now it’s time to talk about the mental health side of things. I finally made it to River Edge. All in all, the intake was about a 4-hour process. The waiting room had maybe 10 people in it at one time. Only about half of them were wearing their masks correctly. But I got through it.

After the intake process, I had to have an appointment with the nurse. That happened two days ago. She reviewed my physical and mental health, took my vitals, and drew some blood. As I was explaining my stomach pain to her, she actually used the word gastroparesis! That’s the first time a medical professional has ever used that word. She said, “I can’t officially diagnose you, but I’ve seen lots of patients with gastroparesis before, and it sounds like gastroparesis to me.” So that was a pretty big deal to me.

As we went over my mental health history, she commended me for getting through it all. She told me it sounds like I “broke the cycle,” and that it must be tough dealing with everything. She was a very sweet nurse, and I knew she was in the right line of work. Nurses just have a certain kind of spirit, I think.

Then it came time to have my blood drawn. Within minutes of inserting the needle, I started feeling sick. I tried to tough it out, but I couldn’t. My vision started going fuzzy and dark. The room was spinning, I felt nauseous, and I was sweating profusely. I slumped back in my chair, and my eyes rolled back. The nurse stopped the blood draw, and two nurses then started “working on me.” They fanned me, put my feet up, put cold cloths across my skin, and gave me water and a fruit cup. After a 30-minute break, she just managed to get blood out of my right hand, a few slow drips at a time. The dizziness started coming back, but I got through it. It turns out that I was severely dehydrated. I’d had an attack the night before. So I hadn’t eaten in about 12 hours, and I hadn’t slept all night. Phew! So now I only have one more appointment with the doctor on the 16th, and then I can have phone appointments – and a case worker! Having a case worker could help me advocate for what I need, provide transportation for things like picking up a prescription or grocery shopping, and connect me to resources overall. They also gave me the name of a lady who helps people with their SSI case, but this particular person wasn’t able to help me. She helps people fill out the SSI application when they first apply. I am fortunate enough to be well past that point.

As for my SSI case, it hasn’t stalled, but my lawyer did get an extension for the appeal so that I can gather more medical evidence. And a few days ago, she sent me a letter stating that they are just waiting on an appeal decision. I think that’s referring to an actual decision on my case . . . so that’s a pretty big deal, too. I know I got really lucky and managed to get a really great lawyer from one of the biggest law firms in the city. And I know she’s working as hard as she possibly can on my case. No matter what happens, I know she did her best.

The fact is that being sick is astronomically expensive. I need electrolytes, vitamins, IVIG, pain medications, medical tests, medical equipment . . . and the costs will only increase as I get more diagnoses. That’s on top of the usual things like food, clothing, hygiene products, etc. Aside from donations, SSI and Medicaid are the only way for me to get back on my feet for good and to truly stabilize my life. I won’t be rich, and that’s okay, because I’ll feel rich. That’s not to say that donations haven’t helped. They’ve saved my entire household more than once, and have kept my sanity intact. They’ve gotten me three diagnoses so far, and they saved me from the most difficult decades of my life. I will never take a single breath without being grateful for that. My ultimate goal is SSI and Medicaid, though. And I have never stopped fighting for that – even after 12 years. Maybe my turn is coming.

My next update may reveal what my doctor at River Edge has diagnosed me with (although I already have some ideas). And hopefully, I’ll have more to say about the rest of my medical battles, too.

My arms and hands are telling me it’s time to stop, so it’s that time again. Thanks 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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