You Can Help Make a Difference
My name is Deanna Brownlee. I’m 35 years old, and I have hypermobile Ehlers Danlos Syndrome (hEDS). What does that mean, exactly?
It means I have a “mistake” in my genes that causes my body to make defective connective tissue. Connective tissue lives all throughout the body, so hEDS causes problems in lots of places. Just a few of these problems:
– POTS: postural orthostatic tachycardia syndrome means that you get sick, dizzy, fatigued, and dehydrated upon standing up. you overheat easily, your blood pools, and you get nauseous.
– Gastroparesis: your body doesn’t understand how to digest food, so you end up with pain, nausea, vomiting, bloating, IBS, and total loss of appetite.
– MCAD: mast cell activation disorder is when you have extreme allergic reactions to harmless, everyday exposures like scents, body washes, and medications.
– Lipedema: this is an often-painful condition that mimics obesity. Your arms and legs remain permanently and painfully swollen and inflamed, and your body becomes misshapen.
– CVID: common variable immunodeficiency disease simply means that you get frequent severe infections, most commonly of the ears and respiratory system.
These comorbidities are just a few of the diseases that hEDS causes. The disease also causes frequent dislocations, brain fog, heart valve issues, extreme fatigue, unrestful sleep, pain, insomnia, and a host of other problems. While it is not guaranteed to be fatal, this disease certainly can be. And there is no cure. All I can do is try to diminish the symptoms as I encounter them, try to control the pain, and advocate for myself and others.
It took me 13 years to get a diagnosis, and unfortunately, that’s typical for most hEDS patients. Doctors don’t understand the disease, no one believes you’re even sick, and everyone dismisses you, accusing you of making poor lifestyle choices. This futility continued for the entire duration of my diagnosis journey, and it was the most emotionally devastating experience I have ever had. My life was in shambles. I had no health insurance, no way of seeing a doctor, no way of supporting myself financially, and no way to fight for disability.
For 13 years, I tried and failed. I bounced from home to home in a desperate bid to avoid homelessness. I contacted every hospital, clinic, charity organization, government entity, and social program in the state. I lost all control of my own life, and all I could do was watch it happen.
I slipped through the cracks, over and over again, for the entire 13 years. I was too sick to work (but God knows I tried). So I tried applying for disability instead. But that didn’t work, because you don’t qualify without a diagnosis. But I couldn’t get a diagnosis because I had no health insurance. But I couldn’t get health insurance, because I’m too sick to work. When the Affordable Care Act became a law, I thought it would save me. But without an income, I couldn’t afford even the lowest-tier plan. My state also chose not to expand Medicaid, so I slipped through the cracks yet again.
In the middle of all of that, I eventually found stable housing, and that is where I currently live. My 3 roommates understand that I can’t help pay for anything, but it’s incredibly difficult for all of us. We are financially strapped, we have one barely-working vehicle between the four of us, and only two of us are working. 2 of my roommates work full-time, I have medical problems, and we literally cannot afford to get my fourth roommate to and from work. We can’t afford a second car, we can’t coordinate our schedules, and we cannot afford the equipment that would allow her to work from home. We can barely afford to eat once a day, and every small setback is financially devastating. We always seem to be one crisis away from losing our home, and it’s exasperating. Two people are working themselves to the bone to keep an entire household afloat, and the burden is insurmountable. And we are still living below poverty level.
While all of that continues to unfold, a GoFundMe donation enabled me to see a very talented geneticist in my state. Friends donated their time, gas, and transportation, and on that day, I got my diagnosis. August 29, 2017 was the first day of the rest of my life.
That was a monumental, life-changing day for me. I felt so empowered! But the work still is not done. I still have to find doctors who can diagnose and treat all my comorbidities. Doing so would provide more evidence of my illness, thus strengthening my disability case.
But I still have no health insurance and no income. After fighting for 3 years, a local program called CarePartners accepted me into their indigent care program. But it isn’t free, and it only covers blood tests and visits. If I have to have anything done at the hospital, I won’t be able to afford it. The hospital does have financial assistance, but you have to reapply for each hospital visit, and the process takes months of frustration and headaches. And it doesn’t cover the doctor’s bill. And because of my desperate lack of transportation, getting to and from these doctor appointments is another layer to all of this. Friends have been generous, but sometimes they need gas money. So every element of my life requires extensive, intense planning purely due to my lack of resources. While I have come so far, I still have so far to go.
In the meantime, I have also restarted my fight for disability – a third time. With a diagnosis in my arsenal, a lawyer has finally agreed to take my case. After two denials and two appeals, my lawyer has finally requested a court date. Soon, my case will go to trial.
I hope my lawyer helps me win my case. But a strong case needs a diagnosis plus comorbidities, and I still don’t have any of my comorbidities diagnosed. And I’ve never been able to work, so I don’t qualify for SSDI, which would be close to a liveable income. I only qualify for SSI. While I am more than grateful for anything I receive, I will still need help. Medicaid also won’t cover everything I need. So, no matter the outcome, I still need Help Hope Live and my donors to give me a leg up.
Donations to Help Hope Live in my honor, will help ease the financial burden of hEDS and allow me focus on finding doctors and treatment that will help me to hopefully some type of recovery or as close as I can get.
I chose to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility to the full extent allowed by law for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please consider sharing this link with others so they may donate as well.
Make checks payable to: Help Hope Live
Note in memo section: In honor of Deanna Brownlee
Please send to: Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Suite 100, Radnor, PA 19087
I hope you all have enjoyed reading, and that you empathize with my story. My journey is far from over, and I invite you all to walk it with me. I look forward to providing updates as my life continues to teach me perseverance.
Thank you all for reading and any support you can contribute.
For more information, please contact Help Hope Live at 800.642.8399.
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!
January 5, 2021
Time for more updates!
First, I had my gastroparesis testing. A friend was nice enough to provide transportation to and from the hospital, and the test itself was easy and painless. We both wore masks around each other, I wore a second mask when I stepped into the hospital, and I used plenty of foaming hand sanitizer. And so far, I don’t have any COVID symptoms. Neither did she. So we both felt safe.
The testing itself was easy, but I was a little nervous. Would it show anything? Would I have answers? Would I have to find a way to come back and re-do this test again and again until it showed something? Would the radioactive eggs look or taste revolting?
The first thing I had to do was eat. The technician brought me a styrofoam container from the cafeteria. Inside was an unremarkable breakfast: two scoops of eggs, two pieces of toast, and two plastic cups of orange juice. I even got some jelly, salt, and pepper. The tech said I only had to eat one of the scoops of eggs, but I ate everything to maximize my chances of becoming symptomatic. Before digging in, she pumped a syringe full of contrast dye into one of the scoops of eggs, and that was that. The eggs weren’t green, glowing, or even weird-tasting. Aside from the toast being a little chewy, it was a normal breakfast.
And from there, I just had to let my body do what it does. The plan was to have a CT scan every hour for 4 hours, and I could not eat or drink anything, and that includes water, gum, and mints. The technician was sure I’d be done in 2 hours, because she was sure I would have digested all my food by then. But by the time I had my second scan, she changed her tune. There was still plenty of food in my stomach. Ultimately, I ended up staying the full 4 hours, because I never did digest my food. This points to gastroparesis! She wasn’t able to give me an official diagnosis, and I don’t know when I’ll get that. But I might just get my third diagnosis! I am slowly unlocking the pieces of my medical puzzle, and it feels good. A life without near-constant agony from food and drink would be a dream come true.
I’ve also been trying to get a prescription skin cream since August. It’s $900 out of pocket, and the Retin-A discount program wasn’t working. Then I found the Bausch Patient Assistance Program. After months of waiting, I was finally able to get in to see my doctor, who could fill out the 7 pages of paperwork. But every time I submitted paperwork, they still needed more paperwork. So then I sent them a Medicaid denial letter, then I had to send them a zero income letter. I just faxed that over today, and I’m finally on track. And I was able to pay the $5 to see my doctor thanks to donations.
I have also been on SCIG for a month. I have another infusion tomorrow, and I am slowly learning the infusion process. My infusion nurse has been phenomenal, and she’s been so patient and encouraging as I learn. My psoriasis has improved significantly, I haven’t gotten sick (other than allergies), and I’m lucky to be a part of this process. And the only way all of this was possible is because of the donations that allowed me to see my immunologist.
So what’s next on the medical front?
1) I’ve got an endocrinology appointment on the 12th. I’m trying to have my third attempt at cortisol testing finished before then. My doctor’s office won’t mail the kits to me (even though they’re the ones that cancelled that second order), so I’ll have to find a way to get to Quest Diagnostics to pick up the test kits, then find a way there again to submit them for testing. I am working with some friends for the first trip, and my caseworker can help me with the second trip . . . but not until the morning of my appointment. So I’ll just have to work with that timeline. Donations will pay for this appointment.
2) Renew Care Partners. They’ll forego the wage inquiry, since the Department of Labor is closed. Once that renewal is complete, I’ll have $5 doctor visits, and thanks to lovely donations, I can pay for appointments.
3) Pick up meds. My psychiatrist has refilled my prescription for Rexulti, which I am taking for depression and anxiety. I also have to pick up Care Partners medications from their pharmacy. The same friends from before will help me pick those up. Donations, once again, will pay for them.
4) Reapply for SSI a fourth time. I now have impairment documentation from both my immunologist and my geneticist. That, combined with my diagnoses, should give me a stronger case.
Kicking down figurative doors makes me feel 10 feet tall and bulletproof, so . . . onward and upward!
December 26, 2020
I had my gastric emptying study! I’ve been trying to get this done for years now, and I finally got it! A nurse from W.T. Anderson called me, and they had an an appointment for December 23rd. A friend was nice enough to take me there and pick me up (we both wore masks).
It was a fascinating experience, honestly. I went into it feeling nervous that the test wouldn’t find anything. I was so used to that being the case that I couldn’t help but be anxious.
So the first thing I did was sit down in the CT scan room and eat. It’s just that simple. I had two scoops of scrambled eggs, two pieces of toast with jelly, and 2 little cups of orange juice. The tech injected CT scan contrast into one of the scoops of eggs before I started, and that was that. The eggs weren’t gross, green, glowing, or weird in any way. After I finished my food, the tech had to scan my abdomen every hour until the food left my stomach.
So my food went down the hatch without an issue. In fact, I had no attack or any kind or symptoms other than a minute or two of indigestion. And the tech kept insisting I’d be done by the two-hour mark. So I dug my heels in and prepared myself for a totally unremarkable test . . . and to have to do this over and over and over again.
But at the two-hour mark, the tech was suddenly convinced that I’d have to stay for the full four-hours, because my food wasn’t digesting. And that’s what I did. Four scans, a little over four hours, and the test was done. The tech couldn’t tell me anything official, but she did say that she was “leaning towards” gastroparesis! I might have another diagnosis! I don’t know when I’ll get an official “verdict,” and I don’t know how, either. But I do know that this little adventure was possible only because of donations.
So what’s next for me? I’ve got to get my hands on more testing kits (which will hopefully be here in the mail soon). Then i have to submit more saliva samples. Between that and my endocrinology appointment coming up in January, I’m hoping to secure another diagnosis.
My geneticist also wants me to try two new medications – a prescription NSAID for inflammation and another medication for brain fog. I already know that the NSAID works well but can give me tummy trouble, so I need to get this possible gastroparesis under control first. And my PCP will prescribe gastroparesis medication pending the results of the gastric emptying study.
Other than that, I just need to be as careful as I possibly can with my finances. Vitamins, medications, appointments, electrolytes, etc., all can get quite expensive. But I am not one to spend frivolously. Every penny I spend is going to go toward my medical and SSI pursuits. All this time, I have wanted only to make progress, and that is exactly what these donations have enabled me to do. One day, I WILL win my SSI case, I will have Medicaid, and this 12-year fight will be over. Because I will never, ever give up until that happens. I will keep going – without hesitation – until I reach my goals.
Until then, I hope you all had a happy holiday season and a joyful new year.
December 16, 2020
The first thing I wanted to talk about today was that I had my first SCIG training session! The nurse couldn’t have been sweeter, and the process went well. I had some slight nausea about 30 minutes afterward, and later on that day, I got extremely tired. I kind of went into “shut down mode.” It’s like my “batteries” died, and I suddenly had an overwhelming urge to nap. And wow did I ever nap! My body went into overdrive, “repairing” all my immune system issues – because it finally could! And I remembered to over-hydrate the day before, the day of, and the day after, too. I’m honestly really happy that I managed to pull this whole thing off! And now that it’s infusion day again, my training nurse will be coming by one more time to make sure I can infuse on my own. It’s a little intimidating, but I just have to tell myself that I can do it.
The other thing is that I made the trip to see my geneticist yesterday. This trip is hugely important to me, because this trip was going to enable me to restart my fight for SSI. I can’t drive, so a friend originally volunteered to take me, since she had appointments in the area on the same day. With all these appointments going on, she originally wanted to get a hotel to cut back on the amount of driving she’d have to do. But what followed was a little messier than that. First, she wanted to get a hotel. Then she couldn’t afford a hotel, and had to just do all the driving. Then, the weather forecast predicted snow, and she almost had to call the trip off completely! Then she could afford a hotel again. Finally, two days before the trip, she had to cancel. She thought she may have been exposed to COVID and now has to quarantine. She felt terrible and apologized profusely, but I reassured her that the most important thing is safety. I did have to ask others if they could help with transportation, and she was worried it would look bad when I explained why. But I told her that I didn’t use her name, that it was the situation and not her, and that I appreciate her regardless. I’d honestly want the same understanding if the tables were turned, so I’m happy to do what a friend should do.
But I ultimately made it, and my geneticist filled out the impairment paperwork. Once I get her famously thorough visit summary, I can reapply for SSI using all my geneticist’s documentation, my immunologist’s documentation, my endocrinologist’s documentation, and my W. T. Anderson documentation. If they still deny me, I can then re-hire the same lawyer, and I’ll have a stronger case.
At my most recent W . T. Anderson visit, my doctor also promised to order a gastric emptying study, as he’s sure I have gastroparesis. I’ll get that appointment in the mail, and my case worker can most likely help with that. That will be more information I can add to my medical files.
Speaking of testing, remember that salivary cortisol testing that I worked so hard to complete? When I got an email stating that the results were in, I raced to the Quest Diagnostics website . . . only to see “Testing cancelled by the client.” So I called around, and basically, between the less-than-stellar test kits, the shortage of kits, and transportation issues, too much time had passed. It took me too long to submit the samples that the order had expired. I’m not sure why someone didn’t just submit a new order and just cancelled the test instead. But I have to do it again.
But at least now, I’ve worked out all the kinks in the process, and this attempt should be much easier. I know how to work around the absent labeling and leaky tubes from the test kits, and my doctor is mailing me three more kits. And before, no one could take me to submit the samples, because it had to be done in the morning. The blood work portion of the testing was a morning test, so I had to turn in the samples while having that test done. But that test is already done, so I can submit the samples any time. So my caseworker can easily help with that. This time, everything will be much easier. But I’ll probably wait until after Christmas to get started, since I have to wait on the test kits to arrive anyway.
I’m off to use the last of my hand strength to email my immunologist and ask for SSI documentation. I will never ever give up. I already see all of this as a victory, just with more steps. Thanks for reading!
December 3, 2020
Bad news . . . my lawyer closed my case – for now at least. She said that I need to get that impairment paperwork I talked about from my geneticist in addition to any other medical evidence I can get. Once I have the documents she asked for, she’ll feel comfortable representing me again.
But she closed my file, so that means I have to reapply for SSI a fourth time. And I’ll do just that once I have everything together – River Edge files, W. T. Anderson files, immunology files, endocrinology files, and my geneticist’s files. I feel like I’m on the cusp of an endocrinology diagnosis, and I have an immunology diagnosis that I didn’t before. And of course, I’m planning a trip to see my geneticist in about a week so she can fill out the impairment forms and provide another visit summary.
So it’s not the best news, but I will not be deterred! Donations will continue to push me forward, and I will never give up. I do have to reapply for SSI a fourth time, but it should be a slightly faster process this time. I’m already seeing my own doctors, so the SSA won’t have to send me to their physical and mental health doctors. That will save some time. And as soon as I get that first denial, I can rehire the same lawyer.
Anyway, I’ve got a busy week next week:
12/7: W. T. Anderson appointment
12/8: SCIG supplies and medication will arrive
12/9: SCIG training
12/15: Geneticist appointment
This update will be short so that I can concentrate on those things and save my physical and mental energy for the tasks at hand. So sorry to make this one so short! I hope all of you have a wonderful holiday season if you celebrate. For those who don’t celebrate, I still hope your month is filled with joy and fulfillment.
Until next time!
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.
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.
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.
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.
October 20, 2020
A few more updates to share . . .
First, my salivary cortisol testing is mostly squared away. I called the lab manager at my doctor’s office, and she explained that since I would be collecting the swab samples myself, I could simply pick up the swab kit from Quest Diagnostics, get swabs on three different days, and bring it back to Quest. Quest can then do the testing. I immediately emailed my “insider” Lisa, and she confirmed that I could in fact do that. She checked their warehouse for test kits, and confirmed that she’d send one to the Macon Quest location. So basically, Quest customer service just got confused. They thought they would be collecting the swab samples, so they couldn’t do it due to the COVID risk. But I would be collecting the swab samples myself, and they would be conducting the test. Phew!
It’s a lot easier to plan two trips to Quest than it is to plan two trips to Atlanta. But it still takes some planning. I have to submit bloodwork as early in the morning as possible. So being at Quest at 8 am is a big ask. I asked my caseworker if she could help, but she lives too far away. There’s no way she could get to my house to pick me up and then take me to Quest, all by early morning. She lives too far away. It just isn’t really feasible.
So then I posted on social media and sent messages, asking anyone and everyone who could help. One person, Jessica, responded. After piling on all the gratitude, we decided that she could pick me up and take me to Quest tomorrow, October 21st. She’ll be here at 7:30 am, which puts us getting to Quest as soon as they open. She is willing to be a little late to work just to help me out, which makes me EXTREMELY happy! Meanwhile, I tried everything I could to make an appointment for the earliest possible time, but everything was booked. So I’ll just have to be a walk-in, and hopefully they can squeeze me in as early as possible.
As for the second trip to Quest, Another friend has potentially agreed to help out. I won’t know when I have to return, because I have to complete the three swabs first. But this friend has been really reliable with helping me get to places, so I don’t foresee too much of an issue. I’ll just try to let her know as soon as I can. So . . . Wednesday at 7:30 AM, and again in about a week. It’s a date! No long, expensive trips to plan! I’m beyond relieved!
Onto the Rare Disease Charitable Foundation and my SCIg.
The gist is that I’m *probably* getting my SCIg infusions for free though RDCF. But there was a snag.
RDCF wanted a wage inquiry as proof of no income. A wage inquiry comes from the Department of Labor. But the DoL is closed due to COVID, and I can’t get a wage inquiry online.
And so began the calls. No one in customer service knew what I was talking about, and the department they kept transferring me to couldn’t help me, either. I called and emailed every number and email address I could find – multiple times. There was no answer, no response from my voicemails, non-functional numbers and email addresses, confused phone agents, and departments that couldn’t help me. Two people suggested I give RDCF a Social Security Statement. So I did, but RDCF rejected it. No dice.
In total, I spent ~6 hours over the course of 3 weeks trying to find someone who could get me a wage inquiry. No one could.
Thankfully, my RDCF financial advisor thought of an alternative document, and my doctor has since faxed it to RDCF. She also had to fax her (corrected) portion of the RDCF application, because she accidentally skipped a question. And that’s done, too. So I’m (hopefully) one fax away from getting SCIg.
Phew. I guess after I get past this chunk of insanity, I can focus on tackling Christmas, and getting my POTS and gastroparesis diagnosed and begin treatment.
In the meantime, a nurse from W.T. Anderson told me that it would be time to renew my CarePartners in January. One of the required documents is a wage inquiry, if I’m not mistaken. It will be interesting to see how they work around the issue of the DoL closure.
So, to summarize, I’m most of the way there with my salivary cortisol testing and SCIg. After that, I’ll start tackling Care Partners, Christmas, POTS, and gastroparesis.
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:
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!
August 5, 2020
On the 29th, I had another primary care appointment. My usual PCP wasn’t there that day, so I had a different doctor. But this new doctor was just as kind and helpful as my usual PCP. I had a lot to tell her, and she tackled everything as best as she could.
First, I told her about my EDS and IgG Subclass Immunodeficiency. She seemed to be familiar enough with the conditions, which is good.
Then, I wanted to discuss medications. Due to COVID, W. T. Anderson shut down for about 2 months, and there was no way to see my doctor and get my usual refill of 60 pills. In order to get a refill, I had to contact someone at W. T. Anderson, who then pulled some strings, who was able to get me 28 pills. And the in-house pharmacy was of course closed, so I had to make plans a second time to find another pharmacy where I could get the prescription filled. I made my pain medication last as long as humanly possible, but I still ran out a few days before my PCP appointment. Luckily, I didn’t have any attacks during those few days. By the time my appointment finally happened, I was definitely more than ready for a refill, and my doctor happily agreed. Aside from that, I also asked for some Retin-A Micro. My wonky hormones sometimes cause skin issues, and putting a stop to that would be really nice.
“Wonky” is definitely the word I’d use to describe my hormones. I’ve seen two endocrinologists for it, and both have given me conflicting information. Endo #1 can’t figure out what’s going on after a year of treatment, and endo #2 can’t seem to decide whether I have PCOS or not. During my appointment with endo #2, she . . . sort of diagnosed me with PCOS? But something didn’t feel right. I never had my “A-HA moment” like I did when I got my EDS and IgG Subclass deficiency diagnoses. She wouldn’t quite say it outright. Instead, she described me as someone with “a PCOS-like syndrome” and with “PCOS-like symptoms.” The appointment left me feeling more confused than ever, so I started searching for answers on my own (sound familiar?) When I asked my friend and advocate, Mary, she asked me to send her all my blood tests results. She read over them, and then responded with a link to an article about something called cortisone reductase deficiency. I emailed this to endo #2, but it wasn’t much help. She just said that it could be complicated to diagnose, and that I definitely have PCOS. I have a follow-up appointment in October, but in all honesty, I’d much rather know what’s REALLY going on with my hormones!
So I explained all of this with my PCP. When I told her that endo #2 diagnosed me based on a testosterone total of 39, she scoffed at the idea. She almost outright laughed! I told her about cortisone reductase deficiency, and she wrote it in her notes, saying that it sounded plausible. So now, I’m not sure what’s going to happen. I did get blood work done that day at the W. T. Anderson lab, but I think that was for other reasons. I just hope I can find a way to investigate this fully. Endo #2 put me on a second medication to give the first medication a boost, and I’m still not seeing much of a difference. The only other theory I have been able to find is a non-cancerous tumor on my pituitary gland. I think at this point, I just have to wait for a follow-up appointment and see what happens? I am not very good at waiting, especially when it comes to my own medical mysteries!
The other issue I talked about was my new GI symptoms. Just a quick warning, though: stomach problems aren’t very fun to read about, so I’ll try to be as tactful as I can.
So I’ve had the pain attacks for over a decade, and the symptoms have been pretty consistent during that time. I’ve described it as feeling like I’m slowly being ripped in half, or like my stomach is in fire while being stabbed. It is horrendous, and it can last for literal hours, even with opiate pain medication on board. But about 2 weeks ago, a new symptom started. To put it gently, food is going through me like a laser beam. 30 to 45 minutes after eating, and everything is gone. The experience is pretty extreme, and honestly, kind of jarring. And oddly enough, as long as this is going on, I don’t have attacks. Because of the sudden and surprising symptoms, and because h. Pylori puts you at risk for stomach cancer, my doctor did have to at least mention the dreaded C-word. Cancer runs in my family, too. So that’s a little scary. I think that’s what the bloodwork was for . . . to potentially detect any cancer markers. To cover all her bases, my doctor also ordered an endoscope procedure, and she wants me to collect some samples at home and deliver them to the lab in person within an hour or so. I should be getting the endoscope “surgery” date soon, at which point, I’ll have to figure out transportation. I also let my doctor know that I had financial assistance with Quest Diagnostics, so she could order as many tests as she wanted. So hopefully that helped in some way.
When I went to the W. T. Anderson blood draw lab for tests, I asked them about the h. Pylori test I never got the results from. They basically told me that no news is good news. Apparently, if they had found h. Pylori, they would have told me. In the meantime, I’d been working on releasing past medical records to my immunologist to see if maybe she could try treating me for h. Pylori. But if it’s not h. Pylori, then what is it?? The pain from h. Pylori is not something you ever, ever forget, and the attacks I’m still having feel like the EXACT same pain. So what’s going on here?? Ulcerative colitis? Crohn’s? Cancer? I wish I knew.
The W. T. Anderson pharmacy did not have all three of the medications my doctor prescribed. They only had the Tramadol. I’ll have to figure out how to get to an outside pharmacy and unfortunately, pay more for the other two medications. But I was thankful that I at least had my pain relief.
So I think an official POTS diagnosis is off the table for now. I’ve got to figure out transportation to submit samples, and to get me to an from an endoscopy procedure. If I have other blood work done for my wonky hormones, I’ll need to figure out transportation for that day, too. And I need to figure out how to get those other two medications, too. I’d love to get everything done at one time. But I guess I’ll just have to wait and see how all of this goes.
A few nights ago, just before bed, I took a few sips of a drink on my nightstand. I immediately started having pain that quickly escalated into a severe attack. I took a Tramadol relatively early on, but after 4 hours, the pain was much worse. My breathing started speeding up, so I tried pacing in my room, but that only made it worse. Just taking a step caused me pain. So I took a second Tramadol, and within 30 minutes, I started to relax. I was eventually able to fall asleep, and I slept like the dead. By the time I woke up, I was a groggy mess, but I felt better. It’s somewhat common for the W. T. Anderson pharmacy to not have what you need. But I’m so, so relieved that they at least had my Tramadol.
I need to figure out what’s going on with my stomach and with my hormones. Both of these diagnoses would add more evidence to my SSI case and make my life a lot easier, treatment-wise. I guess all I can do is take steps every day to try and keep the momentum going. When I get a surgery date for my endoscopy, I’m going to try to plan everything for the day before and the day of. And maybe just keep an eye out for anything that might help me get tests done and solve the mystery. It’s hard to really create a solid plan at this point. But as people might assume, I’m definitely going to try!
Thanks for reading!
July 15, 2020
I have now seen my new endocrinologist and my immunologist for the . . . third time? I think? Sometimes, it’s all a blur. But I couldn’t be more grateful to be accomplishing so much in so little time. It wouldn’t be possible without donations.
At my virtual endocrinology appointment, she did order a ton of blood work. I did get my blood work done, and they took a total of EIGHT vials of blood. The doctor also put me on a new medication called Metformin. It is normally for diabetics. I am not diabetic, nor have I ever been pre-diabetic. But in lower doses, it can give Spironolactone a boost and further balance the hormone levels. So for my hormone levels, I am now on both Spironolactone and Metformin. Metformin is free at Publix pharmacy, but my roommates may not always be able to make it to Publix. There are times when I will have to pay the Kroger pharmacy price. As for the copay for this appointment, donations will pay for it.
At my latest (virtual) immunology appointment, I learned that the doctor still has not heard back about the GammaGuard OnePath financial assistance program for IVIG. They are supposed to hear back from a program coordinator any day now. If nothing else, maybe I can use their health insurance requirement to my advantage. Since I clearly cannot get health insurance any other way except through SSI, maybe I can compose a letter to the Social Security Administration explaining all of this, urging my need for SSI and Medicaid. If my immunologist signs it, it may help my case. The doctor also ordered a topical medication for the skin, which will cost around $20. I will use donations to pay for this if at all possible. The doctor also didn’t seem too keen on the idea when I asked about Mast Cell Activation Disorder, but I’m not surprised. She’s a brilliant provider, but a MCAD diagnosis usually requires a MCAD specialist. She also suggested we hold off on making another appointment until she hears back from GammaGuard OnePath so that I don’t burn through all my donations. There really isn’t much else to discuss beyond OnePath, so it was a smart idea.
I also asked about re-treating my h. Pylori infection. My ulcers are causing me pain every day, no matter how little I eat or drink, and it is often agonizing. I’ve tried twice to treat it in the past to no avail, so I asked for a third attempt. But at least now I know why the treatments have failed! Before treatment #3 can happen, she needed a paper trail, as she can’t just take my word for it. It was a bit of a challenge tracking down the various providers who dealt with my h. Pylori, as medical care has been so sporadic in the past. But after some digging, I found the doctor who diagnosed it and tried to treat it the first time back in 2014, the doctor who tried again to treat it a few years ago, and the doctor who retested me for it about a year ago. I have completed all medical records release forms for all three providers, and I have been working hard to get all of that done as quickly as possible. It could require up to 6 different medications over the course of 6 weeks according to one MedScape article I found. But I want to treat this horrendous, decade-long infection once and for all and eat and drink without pain!
For now, I think I’m just going to concentrate on treating my h. Pylori infection. The pain from the infection sometimes leaves me in unbearable pain all night and well into the morning, even with prescription pain medication. Once the pain finally wears off, I am nothing but a sleep-deprived, groggy mess. I’m definitely ready to get rid of this infection once and for all so that I can concentrate on my efforts on my SSI case and doctor appointments.
My next appointment is July 29th with my primary care physician. I am going to ask for more pain medication and update him on my diagnoses and medications. A friend has already generously agreed to get me there. I will pay for everything using donations. I only have 2 or 3 pain pills left, so if I don’t make it until the 29th, I’ll have to ask my doctor if he can send a refill to the Kroger pharmacy, where my roommates can pick it up. It will cost more, as it won’t be the clinic price, but I’ll do what I need to do.
My remaining focus for now will be to stretch my remaining donations as far as I can to continue with my medical pursuits.. The more diagnoses I have, the stronger my SSI case will be. Anything I do from here will probably require travel, since the best specialists are in the city (or even another state!) I’d love to get my POTS diagnosed, as that would probably strengthen my case to a good degree. For that, I don’t want to see just any cardiologist. I want to see someone who specializes in POTS and understands the nuances of the disease. I thought I remembered hearing about the Mitral Valve Prolapse Center of Alabama in Birmingham. I’ll definitely do more research and see what I can find out.
For now, it’s time to bring this update to a close. My hands are sore, and my stomach hurts. It’s time to lay down with my heating pad and a good movie.
Thanks for reading!
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!
May 28, 2020
Update time again!
I have decided that I cannot wait three months for repeat immunology blood work. That’s just not enough. I need more proactive care than what I’ve been receiving. I need more from my (second!) immunologist. After discussing it with my friend (and fellow patient) Christi, I decided to call Dr. Andrew Pugliese one more time, and give it one last shot.
The receptionist again tried to say that they don’t accept self-pay patients. She explained that, when they order blood work, it would require separate bills from other facilities. So I told her that I already have a financial assistance account with Quest Diagnostics. With that, she jotted down my information and passed everything along to the billing department. Connie from the billing department called me less than an hour later, and told me that the initial visit would be $160, the follow-up visits would be $75 each, and monthly infusions would be $3,100 each month. But if I could get diagnosed with whatever this immune deficiency issue is, I’d be much more likely to win my SSI case, and Medicaid could then pay for infusions. I just need help with the appointments initially. And I need to figure out finances as soon as possible. I’m working on a deadline for my SSI appeal, and appointment slots fill up quickly. I really want to go to an appointment on the same day as Christi has her appointment, and we could just go together. Time is of the essence!
As for the psychiatry, Emory told me today that their adult psychiatry department does not qualify for their Charity Care (financial assistance) program. So that basically leaves me with First Choice Primary Care virtual psychiatry appointments. And that’s fine, but they want me to go print out a document, deliver the document in person, fill out more paperwork while I’m there, then have an appointment with a physician who will then refer me to psychiatry for virtual appointments. One of my friends has already agreed to print the document out and mail it to me. So I have done what I can for now. I have no income, so I would most likely pay $20 per visit, and I don’t yet know how many appointments I’d need. And I need help with that as well. It’s honestly dangerous because of the COVID-19 pandemic. I want to keep myself and my roommates safe. But I don’t have much of a choice at this point. I’m working on a deadline, and I don’t have time to scour the internet for more psychiatrists that may or may not have virtual, indigent care. So I’m going to wear my n95 mask and take as many precautions as I can.
An immune deficiency diagnosis and psychiatric care are my two biggest priorities right now, and both avenues have costs associated with them. Between the two, an immune deficiency diagnosis would be the strongest evidence in my SSI case. But I am pursuing both, and keeping my lawyer updated on everything that’s happening. Maybe this is the flicker of hope I needed. I couldn’t even convince Dr. Pugliese’s office to take me on as a patient at first, and now that has changed! I’m hoping this will set things in motion and get the ball rolling for me. Will you please help?
Thank you for reading. My circumstances are changing by the day, and sometimes even by the hour. So I hope all of this makes sense in my rush to get things going!
P.S., Thank you, kind, anonymous donor, for contributing to my cause! This donor and I recently talked at great lengths, and I expressed my gratitude in no uncertain terms. But because I cannot say it enough, thank you!
I will continue to post updates as my medical journey continues to unfold.
Thank you all for reading!
April 22, 2020
Time for an update!
It seems that my only two choices for mental healthcare are First Choice Primary Care or Emory Healthcare, both of which have financial assistance and virtual appointments. FCPC will likely cost me between $35 and $45 per appointment, and I am unsure of Emory’s sliding scale fees. even then, I’m not sure if these facilities would require up front payments, or if I could send them a HelpHopeLive check later. All of that is still a work in progress.
In the mean time, I finally had an appointment with my new immunologist, and it was a resounding success! Let’s start from the beginning.
It all started when I had to look for a THIRD immunologist. Emory has financial assistance, and Dr. Shuh has good reviews, so I made an appointment with her. But then, COVID-19 happened. Emory cancelled my in-person visit and offered to reschedule for a virtual appointment. I’m trying to gather additional medical evidence for my disability appeal, but there’s a deadline. So I’m working on a time crunch. Dr. Kalangara was available almost immediately, so I took a leap of faith.
It paid off! She couldn’t have been sweeter or more helpful. The appointment was a resounding success. A recap:
1. Emory has relaxed it’s payment requirements temporarily due to the COVID-19 pandemic. Also, just before the appointment, I was able to electronically complete and submit the Emory Charity Care Financial Assistance application. So the cost of the appointment is sorted out for now.
2) After I explained my history, my doctor willingly ordered tons of blood work. She submitted the order to my local Quest Diagnostics, which has financial assistance. The financial assistance application is on its way to my house as we speak. The Emory nurse has to finalize the order and fax it to Quest Diagnostics anyway, so that gives me time to complete the Quest Diagnostics financial assistance application and get it sent off for processing.
3) My doctor also ordered what is called a vaccine challenge. You get an initial pneumothorax vaccine, then get a second one 4 weeks later. Your body’s lack of an immune system response indicates a possible immune deficiency disease. Due to COVID-19 travel restrictions, I can get this done at my local pharmacy. Unfortunately, the total cost for these vaccines will be $220. I am working on that as we speak. I will call the HelpHopeLive billing department tomorrow to see what I can do.
So now, the challenging part will be to find transportation to Quest Diagnostics, and then to my pharmacy on two different days. Also, I’ll need to come up with $220. I have an N95 mask that I will wear when I go out.
I have been fighting to stabilize my life since 2008. This could very well do it for me.
My hands are now extremely sore and starting to throb, so it’s time to bring this update to a close.
Thanks for reading!
April 9, 2020
A few days ago, I got my hearing decision. The judge denied my case. Unfortunately, I received an unfavorable decision. I lost. I have until April 30th to file an appeal with additional evidence.
The first thing I did was call my lawyer. She wants me to substantiate my case by seeking out a psychiatrist or psychologist. The problem is that I would need indigent care (limited funds) and telecare, a.k.a. Virtual appointments, because I have no car. It’s feasible to ask a friend to drive me somewhere occasionally, but not every week. Aside from that, one friend, who was helping a lot with transportation, just moved 2 hours away. Anther just lost her mother-in-law. So even if it was just the occasional appointment, help with transportation is out for now.
And so began my search. I posted on social media, researched, Googled, dug deep, and searched even more. I left no stone unturned. I looked through 211, SAMHSA, everything. It kind of felt like I was back to square one after all the progress I had made, and that hasn’t been easy.
After scouring the internet, making endless phone calls, and sending countless emails, I’ve come up with a few options that may or may not help. Most places required hundreds of dollars up front, which complicates matters, as I have limited time, limited funds, and paying through HelpHopeLive can be a lengthy process. Other places didn’t ask for money up front, but were expensive or didn’t have virtual appointments. Further still, some facilities offer counseling only, which will not yield any diagnoses. I need a psychiatrist or a psychologist, and not every place offers that.
Anyway, this is what I’ve come up with:
1) ReachLink -They have virtual appointments; the cost of $100 is not up front. That would get me 8 to 12 appointments, depending on my remaining HelpHopeLive balance once other facilities receive their payments. I am not sure how many appointments I would need.
2) First Choice Primary Care – They have virtual appointments. I would be considered a new patient, so I would have to submit a written letter of my indigence in person; I have issues with my immune system, and exposing myself to the Corona virus is not safe. That’s IF I could find transportation to print out the letter somewhere and then deliver it in person.
3) Kentucky Mental Health Care Systems – I do not have to live in Kentucky in order to receive their services. It is $125 for the first appointment and $75 for each subsequent appointment. That would get me 8 to 12 appointments, depending on my remaining HelpHopeLive balance once other facilities receive their payments. I am not sure how many appointments I would need.
4) Community Health Care Systems – I have left a message with this facility, and I am waiting on a return call.
5) New Dawn Counseling Center – I have left a message with this facility, and I am waiting on a return call.
6) Life Solutions Counseling Services – I have left a message with this facility, and I am waiting on a return call.
7) Ingleside Counseling – I have left a message with this facility, and I am waiting on a return call.
8) Lighthouse for Families – I have left a message with this facility, and I am waiting on a return call.
More recently, one of my roommates has also learned that she has a suspected case of the Coronavirus, so quarantining myself in my bedroom is best for the safety of myself and others, especially given my immune deficiency issues.
So that is where I am now.
All three of my roommates are still working full time, which is a double-edged sword in itself. The three of them work in two different facilities, both of which are considered essential. And while that’s fortunate for us in a good way, it also potentially exposes all of us to a disease that can be fatal in the healthiest of people. I am fortunate in that, two days ago, a friend of mine had an extra N95 mask. She gave it to me when she picked up a medication refill for me and dropped it in my mailbox. I wear it as often as I can any time I have to step out of my bedroom.
Let’s all work together to stay safe. Quarantine as much as you can – not only for your own safety, but for the safety of others. Wash your hands, wear your mask, and be vigilant. If you have to leave the house, stay 6 feet away from people – and wear your mask. If you show symptoms, seek medical help. This can look a lot like just a cold or just a sinus infection. Do not assume it’s nothing. Do not assume you are exempt or that you’ll survive just because you are young, or because you have no underlying medical issues. If you or a loved one starts saying things that don’t make sense, the brain may not be getting enough oxygen. In that case, it could be a medical emergency, even if you feel fine or “don’t feel that bad.” I wish we could all get tested. Until then, be proactive and on guard. As for me, I have handwashing, an N95, inhalers if I need them, and self-quarantine.
Because the Coronavirus is complicating things, I may have to wait a few weeks and reapply for SSI a FOURTH time, and spend another two years going through this all over again. But I’d rather not. I want to move forward with this, and it’s a tense, stressful time right now. I’m doing my best to keep it together mentally, but it hasn’t been easy. This has been going on for well over a decade, and sometimes I just need to sit and process my frustration. But I can’t do it for very long, because time is of the essence. All of this has to get done. I have to fight this. And I will. But I won’t lie and say it hasn’t affected me. I guess all I can do now is take a deep breath, dig my heels in even harder, and push forward. It’s sink or swim at this point. And I could really use a lifeboat!
March 31, 2020
Just wanted to add a quick update while my hands are up to the task. I can’t sleep anyway, as I got hungry, ate a small amount of popcorn, and now feel sick as a result.
I had my hearing on March 12. I haven’t yet received a final decision. A friend of mine who has been through this process told me that if I don’t hear anything for 6 weeks, there’s a good chance I’ve won my case. If I receive a decision fairly quickly, there’s a good chance I’ve lost my case. It’s been 2 weeks so far. Here’s to hoping!
As for this COVID-19 and Corona virus mess, my household is being as responsible as we can be about it all. We don’t leave the house unless we absolutely have to, and when we do, it’s typically for food shopping or work only. Even then, only one person leaves at a time whenever possible. We aren’t “panic buying,” we don’t have friends over, and we don’t attend any large gatherings. We’re also taking extra steps to be vigilant with 20-second hand washing, leaving shoes at the door when we come in, and so on. I mostly stay at home anyway, so nothing much has changed for me.
In a way, we got lucky. All three of my roommates have jobs that are considered “essential,” so we still have all three paychecks coming in. At the same time, that puts them in contact with people every single day. Two of my roommates enter hospitals every single day as a part of their jobs, so all of that puts the household at risk . . . especially me, as I’m dealing with immune deficiency issues.
I have been a little more stiff and achy, a little more congested, and I’ve been coughing a little more. But I’m hoping it’s just an EDS flare or the seasons changing. I don’t want COVID, nor do I want to miss my new immunologist appointment coming up in about a month (if that’s still an option). I’ve had to part ways with the first two immunologists, so I’m hoping the third time’s the charm!
For now, though, we’re all safe, and none of us appear to have COVID-19. All I can really do at this point is just keep moving forward. Each day that ticks by without a hearing decision makes me breathe just a little easier.
And at this point, there’s nothing else I can really do but wait . . . and learn to sit in the silence. I have done everything I can to advocate for myself and my life’s stability. There are no more to-do lists to write, my email inbox is empty, and I’m all out of phone calls. No longer is my life little more than a series of vicious, losing battles. I am finally at a point where I can just coast along, and I’ve been enjoying the “vacation.” It is time to be still and dream of finally getting to start my life over.
Recently, I have gotten some donations. My entire household is thankful for them every single day. Still, I often ask myself, “How is it that I, of all people, got so lucky? Why did people choose me, a flawed person, as the one who deserves help? It’s not that I’m not thankful. I am! But how did I manage to experience that? My theory is that it’s because I did everything I could to help myself – and I still do. People help those who help themselves. And that’s honestly all I have ever tried to do. I have shown symptoms since middle school – since the age of two, if you count my emergency surgery – and I am now 36. From the moment I had my first symptom, I fought mercilessly to sustain an education and a career. When that didn’t work, I fought mercilessly to advocate for myself medically – even when others refused to. When that didn’t work either, I finally applied for disability. That was 12 years ago, and I’ve been fighting mercilessly for it ever since. Literally through blood, sweat, and tears that people often refused to see, I fought for myself. I fought for myself even when fate insisted that I fail. I’m proud of how far I’ve come, and now it’s time to be still.
I hope everyone out there is staying safe and healthy!
March 11, 2020
Today is the day before the most important day of my life. I have secured transportation, chosen an outfit, and I have reviewed my itinerary many times over in my mind. Tonight, I will pack a bag with clothing, toiletries, and all the paperwork and medication I’ve acquired since this began two years ago. With the help of HelpHopeLive, I’ve fought for as much medical progress as I could. I’ve done everything i could possibly do. It’s time.
Today is the day before my SSI hearing , and I’m terrified.
The fate of the rest of my life rests with one human being. This human being will decide whether or not I have stability for the first time in my life. For the first time in 36 years, I could have health insurance, and a steady income.
In saying these words, I hope I don’t sound ungrateful in any way whatsoever. There is honestly no way to convey the extent of my gratitude I have for those who have donated. It’s just that my fate hangs in the balance in a very unknown way, and I’m absolutely terrified.
Imagine being able to buy food and electrolytes indefinitely! Imagine always being able to pay for any specialist I need! Imagine how I’ll feel when I can replace my clothing and shoes at any time that they become irreparably worn with holes!
I wouldn’t have even reached this point in my journey without donations. Whenever I feel discouraged, try to think abut all the progress I’ve made . . . which happened because of donations.
I’m SO close. Right on the cusp. So whatever it is that you do – prayer, incantations, crossing of fingers, sending of good juju or positive vibes , etc – please do it if you feel I deserve it. My life depends on a favorable decision.
This has been 12 years in the making. Wish me luck!
(Small side note: Please know that I *am* utilizing my HelpHopeLive donations. The “funds raised” balance has remained unchanged, only because there has been a bit of back and fourth in paying for my appointments. I am still working on that on top of preparing for my hearing. In the mean time, please rest easy knowing that I am always grateful for every cent of help I receive. And I promise the funds are going to be a massive help!)
February 20, 2020
After weeks of patiently waiting, I finally saw my doctor, who was supposed to fill out my lawyer’s paperwork, then I could just focus exclusively on my trial from there. But, as he stated, “we can’t do that here.” I have different game plan in the works, though. My doctor gave me the name of another local doctor who CAN fill out the type of paperwork I have. So I’m going to verify that this other doctor will do it, and if not, call my lawyer and as them how to proceed. From there, I’ll try my best to plan transportation, coordinate payment, and then deal with medical records if he wants them. My hearing is 21 days away, so I have GOT to get this done! It’s crunch time! Wish me luck!
January 24, 2020
It’s update time!
My SSI hearing is looming closer and closer. The official date is March 12, 2020. A few days ago, I had one last phone meeting with my lawyer. She said she’d be sending me one last bit of paperwork that she wanted my doctor to fill out. She also wanted me to make a very specific, very descriptive, detailed list of how my symptoms affect my ability to function. I have written many things throughout my life; this one will surely be the most important.
Another development to note: I have had to find a THIRD immunologist. The first refused to see me, and the second has stopped making an effort to diagnose me. As they have stated, “There is no further treatment necessary at this time.” But all they did was order a single round of tests at my urging . . . and they’re already giving up. So I managed to get an appointment on the same day and with with the same new doctor as a friend of mine. The doctor is almost 2 hours away, and it looks like I’ll be carpooling with her. Funds raised from HelpHopeLive will pay for it. So plans for that are about 90% finalized. Unfortunately, the soonest I could get in to see this new doctor is April. So I won’t get her documentation before my hearing. But maybe the eeffort I’m making will count for something.
I’m afraid that I will have to keep this update brief, as typing has become more and more difficult with my progressively weakening hands. The aching and weakness is causing me to skip letters and end up with pain that starts in my fingers and travels to my wrists and then my forearms. I will be getting those ring splints as soon as I possibly can.
Thank you all for listening!
December 13, 2019
It’s been awhile since I last updated. But believe me when I say I’ve been busy! The two main issues I’ve been tackling have been my hormonal issues and my immune deficiency issues. And it’s been an uphill battle from the beginning. I thought I was making some headway, but this week has definitely proven otherwise.
After transportation plans threatened to derail my follow-up endocrinology appointment, I found transportation at the last minute. A week before this particular appointment, I had to fight to find a way to the blood draw lab for repeat tests. I still can’t figure out how I managed it, but I did. And my repeat testosterone and chem-8 blood tests were COMPLETELY unremarkable. My testosterone levels are exactly where they should be, and my chem-8 blood work showed absolutely no nutritional issues whatsoever. Nothing was even borderline high. Everything was totally normal and negative for all problems. Which is good to a point. But I still don’t have answers as to what’s happening with my hormones. To quote my endocrinologist, she said, “I don’t know what to make of that.” She recommended I see a dermatologist, which Care Partners does not offer. So it would be yet another fight to find the right doctor, fight to pay for the visit, fight to get to a blood draw lab, fight to pay for the testing, and fight to blindly search for more answers. I hope none of this sounds ungrateful, honestly. I think what keeps me going during my most overwhelming days are the donations. Because those donations enable me to keep searching for answers so that I can get what I need medically. If I can’t keep searching, I sometimes don’t feel like I have a lot left. I’m not sure exactly where I’m going to go from here in search of answers, but I won’t give up on it, either.
I also can’t forget about my immunology issues, either. It’s getting to the point where treatment (antibiotics, etc.) just don’t work at all, or the infection comes right back as soon as the treatment is over. So after I fought to find an immunologist, then fought to get to the appointment, then fought to get the blood work done . . . I had my follow-up appointment. It initially had to be rescheduled, because my blood work results took awhile to finalize. But I finally had that potentially life-changing appointment . . . and every single test was normal. I ordered over $900 worth of tests, and thankfully, the lab has financial assistance. And it’s good that I’m amassing a paper trail of medical evidence (thanks to donations), and it’s good that I don’t have CVID. But I also still don’t have answers, when there is clearly a problem. I’ll be honest with you all: I’m not thrilled. It’s hard to not be overwhelmed sometimes. It’s very disheartening when you work so hard, only to reach more dead ends. But I have to try to remember that every failure is one step closer to victory. And these donations are the only reason I’m able to continue moving forward.
As soon as I got home from my immunology appointment, I contacted the Immune Deficiency Foundation to see what I could do next. I spoke with someone there, and she said that I might have something called Specific Antibody Deficiency, which is very similar to CVID. I’m still learning about all of this, so I hope I have my facts straight. But I think CVID is where parts of your immune system are missing, while SAD is where all the parts are there, but they’re asleep on the job. This requires testing over the course of several months. It is called a Vaccine Challenge, and you get certain vaccines, then test your immunological response to them over time. I’ve got a follow-up appointment with my immunologist in 6 months, but they told me to call them if I have any questions before then. So I called them and told the nurse to call me back so I can discuss SAD testing. I am still waiting on that phone call. When I got home, I also tackled several erroneous medical bills, battled uncooperative customer service reps, and coordinated payment between my immunologist and Help Hope Live. All that on top of recovering from yet another stint with bronchitis. After all was said and done, I was so wiped out from the week that I may have been asleep before my head hit the pillow.
I feel like I have been very honest in this update. I always am. I never lie, exaggerate, or stretch the truth. But today, I’m a little more raw, and I think that’s okay sometimes. Sometimes, when journeys are winding, gritty, and enduring, the sea can get a little rough, the skies a little turbulent. Sometimes, there are tears, anger, frustration, and wavering. I’m not always strong, but I’m always grateful. Sometimes I need time to breathe. Sometimes I have to remind myself that I am one step closer to what I need. Sometimes it’s one day at a time, and other times, it’s one moment at a time. I’m not always strong, but I am always grateful.
One last thing to note: I finally got my SSI hearing date. On March 12, 2020, my life could very well change forever . . . or remain the same. But I’m hoping for good news. Thinking positively. Preparing for the worst, but hoping for the best. I am amassing as much medical evidence as I possibly can before my court date. It’s a figurative fight to the death at this point. Wish me luck.
Thank you all for your donations. Every penny brings me one penny closer to pursuing medical treatments and financial stability. I couldn’t do it without all of you. Much love.
November 1, 2019
It has been quite the whirlwind as of late, but I am happy to report that I was finally able to see an immunologist! Not only that, but they also gave me all the immune deficiency testing I wanted. From start to finish, this has been a massive undertaking.
First, I had to find an immunologist that is familiar with both EDS and CVID. I started by scouring EDS Facebook groups and researching the different options. Some had financial assistance, but they were out of state. Others weren’t familiar with my complex health issues. Ultimately, one doctor’s name kept showing up. We’ll call him Dr. P. After weeks of research, I decided that this was the right doctor for me. I spent the next few weeks filling out new patient paperwork, coordinating payment with HelpHopeLive, and planning the day. Then, five days before my appointment, they cancelled it! I was devastated. They said it was because “my case is too complicated.” I thought that was odd, because multiple CVID patients personally recommended him.
Not to be deterred, I started researching a new doctor. A friend and CVID patient recommended Dr. L, and by the time the day was over, I had everything taken care of and ready to go. HelpHopeLive donations paid for the visit, and a friend graciously agreed to provide transportation.
I had that appointment last week. They performed several breathing tests with a machine called a nebulizer as well as the full scope of allergy tests. The nebulizer is supposed to open the airway up to 20%, and it only opened my airway 3%. They also determined that my lungs are functioning at 111%. The allergy tests then showed absolutely no reactions whatsoever. I didn’t even react to the “control allergen,” which is a basic irritant to make sure my body is responsive. But I was undeterred, as I was there for immune deficiency issues, not allergies.
After generating the order for blood work, the nurse returned with the document in her hand. She initially only ordered the blood test for allergies since I was so non-reactive. But once I explained that I was uninsured and without an income, she reconsidered. I told her that a lab called Quest Diagnostics had financial assistance, and I would be going that route to ease the cost of the tests and spread my donations even further. She felt that, since I was pursuing financial assistance, “we might as well get it all done at once.” So I got all the tests I wanted!
Next, it was time to plan my visit to Quest Diagnostics. After initial transportation plans fell through, I found an alternative. A friend of mine had the week off from work, and he very generously agreed to take me to get all my testing done.
First, I had to drop off a tissue sample at the clinic to test for h. Pylori. This is a bacterial infection of the stomach that causes excruciatingly painful ulcers in the intestines. I’ve attempted to treat it multiple times with prescription antibiotics, but the symptoms just return once the treatment ends. After a bit of back and forth, we got that done. Next stop – Quest Diagnostics!
About 1 to 2 weeks prior to my Quest Diagnostics visit, I called them to ask about their financial assistance policy. They assured me that they do in fact have financial assistance, and that I could just go to my local blood draw lab whenever I want to and get the blood work done. So today, I went. But once they called me back to get everything started, they couldn’t draw my blood without a payment first. No reimbursements, no payment plans, no nothing. The cost was over $900. I needed the testing so badly that I almost paid right then and there. But I knew I wouldn’t have used my donations wisely if I spent more than half of it on one panel of tests. So I went back to the waiting room and called customer service again. I eventually got a live person, but the conversation wasn’t progressing, so I handed the phone to the supervisor of Quest Diagnostics. Together, they figured it out. Customer Service should have mailed me a financial assistance application that I should have completed and taken with me to Quest Diagnostics. So I was going to have to plan transportation again and redo everything once I got the application in the mail. Just to be thorough, I sat down in the waiting room and called customer service a third time to make sure they were sending me the application. While on the phone, the supervisor walked up and handed me the application! I hung up the phone, filled out the application, gave it back to her, and they took my blood right then and there. I can deal with documentation (proof of need) once I hopefully get that information in the mail. I should have the blood test results in time for my November 12th follow-up appointment with my immunologist. And I will be able to afford that follow-up, once again, thanks to donations.
I am also dealing with endocrinology issues. My doctor has theorized that I have PCOS, but all 11 blood tests were negative. In December, I will return to the clinic to repeat them. I will discuss the results a week later at a follow-up appointment. If the results are still negative, there’s a chance I could have a tumor on my pituitary gland. That would require a relatively invasive surgery to remove. I have been monitoring my symptoms and making sure my endocrinologist is aware of every relevant symptom I’ve ever had. Though a surgery sounds daunting, it will strengthen my SSI case, which will increase my chances of winning. If that happens, I will finally, for the first time in my life, have stability.
And if I do in fact have CVID, it will require monthly plasma infusions for the rest of my life to continuously replace the parts of my immune system that are missing. These infusions are $3,000 apiece, although some manufacturers offer financial assistance. This, too, might be daunting to some, but it would strengthen my SSI case, and increase my chances of attaining stability. It would also be a much more effective treatment for the constant illnesses and infections I experience.
At some point, I also plan to pursue ring splints. My geneticist recommends them, and they would help stabilize my hands and fingers and reduce strain and injury. WIthout them, arthritis could set in. They average at around $100 apiece, and you need one to two rings per finger. You also have to pay for a hand therapist visit, who assesses your needs and measures your hands. Some patients need splints on all 10 fingers, while others need only a few rings. The best brand comes from SilverRingSplint.com. they use the best materials, the most precise measurements, and the largest variety. Rubber and plastic are not as effective, so the rings really should be metal. Once I get through more of the endocrinology and immunology mess, I can focus more on ring splints. Donations will of course help with that as well.
Thank you all for being a part of my journey and for your continued support. And thanks for reading!
October 4, 2019
I have more updates to share!
Progress with an immunologist has been slow, but after a few months, I’m finally on my way! Here’s what’s been happening with that:
To find a good immunologist, i started with copious amounts of research. I compiled a list of immunologists that other EDS and CVID patients have recommended in the past. I combed through all my information, comparing all the pros and cons. But the name of one name kept coming up. We’ll refer to him as Dr. P . . .
Next, I spent TWO WEEKS trying to coordinate an appointment. That in itself was a massive undertaking.
First, I had to coordinate payment between Dr. P and Help Hope Live. I went back and forth, making phone call after phone call and sending email after email. Eventually, Dr. P’s office finally seemed to figure things out. I was on my way to getting an appointment!
Then, a few days later, Dr. P’s nurse emailed me to let me know that they don’t treat CVID patients. But countless CVID patients so strongly recommended him. Confused, I called them again and got it all straightened out.
Then, a few days later, they told me they dont take self-pay patients. So I called them once again and got it all straightened out.
A few days later, I learned that I had an appointment on October 7th. I spent more than an hour sending all my medical records over to Dr. P from five different facilities. From there, I planned transportation with a friend. Everything was coming together.
A few days following that, I got a phone call saying they cancelled my appointment! i fought it as much as I could, but there’s nothing I can do. They said my case is “too complicated.”
So I had to start from scratch. After venting to a friend, I pored over old notes and reconsidere my options. I made a few phone calls, but ultimately chose a local immunologist who is familiar with both EDS and CVID. Thanks to donations, I can pay for the visit itself as well as any additional testing. My new immunologist will use either LabCorps and Quest Diagnostics for testing, and both have financial assistance programs. This will further stretch my donations! I’m so excited!
In addition to my immunology goals, my yearly virtual follow-up appointment with my geneticist is just around the corner. And thanks to donations, I can make that appointment, too. And that should strengthen my disability case, as the judge will see that I keep all appointments and make every possible effort to pursue my healthcare goals.
Another exciting development is that I have managed to get another important medical test! Genelex labs sells a medical test called the MedMPact Plus test. It aims to reveal how you metabolize medications. So if certain meds are ineffective, allergenic, or slow to take effect, this test wants to tell you why. I have an extensive history of all of those issues, and this kind of information can keep a patient safer and healthier. Thanks to donations, I was able to undergo that testing, and I can expect the results around October 16, 2019.
I also have another endocrinology appointment on December 11th, and I’ll be that much closer to discovering the cause of my hormone imbalances.
I have never had this kind of access to in-depth medical care before, and it’s a feeling like no other. I feel like I’m making progress, chipping away at it all. I feel like I’m finally starting to regain control of my life, and it’s beautiful. And it’s all possible thanks to donations.
Thank you all for everything you’ve done. I look forward to posting more updates soon.
Until next time!
September 6, 2019
For the past two months, my body has been trying (and failing) to recover from my millionth stint with bronchitis. When my symptoms started, I went to urgent care. The doctor diagnosed me with bronchitis and gave me a steroid, a cough syrup, and an antibiotic. I took every single dose on time and as instructed, and I dedicated myself to self care. But by the time I finished all my medication, I felt even worse. By this point, I was too exhausted to even sit up or talk. Some friends of mine dragged me to the ER, where they gave me fluids, an IV antibiotic, and an oral antibiotic to take at home. By the time I finish all of that medication, I felt no better.
So for 2 months, my fight for healthcare was on hold. I’m still definitely not better, but recently, I’ve been able to resume my usual fight from my bed. I’ve been able to push myself to make phone calls, send emails, and research my options. Over the last two days, in between naps, symptoms, and brain fog, I have spent a total of 5+ hours calling and emailing various people.
First, I found out about a company that offers financial assistance for genetic metabolic testing. That basically means you can find out how well or how poorly your body processes and reacts to medications. That company is called Genelex Labs, and the test is called MedMPact Plus. After a few days of effort, Genelex had the documentation they needed, I was enrolled in their financial assistance program, and I had secured the funds thanks to the generosity of others. Now the test kit is on its way here in the mail. Soon enough, I get to find out why some medications are toxic to me and some take hours to kick in – if they work at all. And if I request or refuse a specific medication in a medical setting, healthcare workers can’t accuse me of drug-seeking.
I also spent ~3 of those hours calling the IRS trying to get ONE document so I can apply for the hospital’s financial assistance on account of my ER visit. The IRS website wouldn’t let me register for an account to request the document online, and the phone system didn’t recognize my information. I was only able to occasionally get a live person by calling the wrong department endlessly. Three of those live people gave me the same advice, which led to the same online dead end. A fourth person said there were too many people calling and using the website. A fifth person finally helped me get what I needed, and it was only two clicks away. I am currently waiting on a document to arrive in the mail. I have to complete that, mail it back, and THEN I can get the document I needed in the first place. Then I can apply for the hospital’s financial assistance.
Next, I worked on my next goal of seeing an immunologist. After researching an EDS-friendly immunologist that treats CVID, I found Dr. Andrew Pugliese. I emailed him and explained everything, and he said to make an appointment at any time. So I planned everything with Help Hope Live, called the doctor’s office and explained everything, got prices and more info, and coordinated finances between the doctors office and Help Hope Live. Everything was going well. Then, the next morning, I got an email saying Dr. Pugliese doesn’t treat CVID… even though his website says they do. They also sent me a link to a list of online EDS healthcare providers. Two were in Georgia, and neither one was an immunologist. I am now repeating this entire process with a new doctor, Dr. Theodore Lee. Help Hope Live is currently negotiating payments. Thanks to donations, I will soon be able to see Dr. Lee and get the testing I so desperately need.
After some scrambling, I also managed to make it to my follow-up endocrinology appointment. The doctor agreed that PCOS isn’t just a fertility issue, and that the NP I saw at my last appointment shouldn’t have neglected to treat me just because I’m not trying to start a family. After some debate, she put me back on my favorite medication, which is already starting to counteract my symptoms. Since all my endocrinology blood work was negative, she ordered repeats, which I must pursue in December. There were also talks of doing some imaging, as negative results with my symptoms can indicate a tumor on the pituitary gland.
And finally, my bronchitis is s-l-o-w-l-y dissipating, and I’m very slowly recovering on my own, 2 months later. I’m not back to my usual self yet, but I can sit up without feeling like I am dying, for example. Four different medications and plenty of self-care didn’t knock it out, but I have bigger fish to fry at this point, as you can see.
When I was taking antibiotics, my horrible stomach attacks stopped. Now that I’m off antibiotics, they’re back again. That’s pretty typical for me. On antibiotics = multiple improvements. Off antibiotics = symptoms as usual. And that’s if the antibiotic work at all. An I’m not catching all these contagious illnesses from anyone. I just . . . end up with them. Over and over again. It smells an awful lot like CVID to me.
My hands now hurt from typing (I need hand therapy and ring splints, but one crisis at a time!) so I feel like this is pretty good update for now. I appreciate you all for reading this, and thank you all for your donations!
August 11, 2019
It seems that I’ve somehow come down with a case of bronchitis that just won’t quit!
I started getting symptomatic about a month ago, so I went to my local urgent care facility. Because I am enrolled in CarePartners, the visit was only $25. Sure enough, it was bronchitis. The doctor gave me an antibiotic, a cough syrup, and an anti-inflammatory. I finished all my medications, and I never missed a dose.
But at that point, I was feeling even worse, so I went to the ER. They have a financial assistance policy in place, so I wasn’t as concerned about the cost. After a bunch of tests, they determined that I still have bronchitis as well as a UTI.
Today is day two of a week’s worth of new antibiotics, and I have now been sick for over a month. I don’t feel any better.
I also end up in significant pain every time I eat or drink anything, and it’s looking like that may be due to an h. Pylori infection that has survived three rounds of antibiotics.
At this point, I need to see an immunologist who understands EDS and the many complicated issues it can cause. I’ve done the research, and I already have a doctor in mind. That’s where your donations come in. The cost of the visit out-of-pocket will be several hundred at least, and I’m sure he’ll want to order some expensive tests. The money I’ve raised so far (and any additional funds I raise) will all go toward the cost of this visit.
Thank you all for the help you’ve so graciously donated.
July 19, 2019
A *MASSIVE* thank you goes out to my first donor! He graciously and selflessly donated $1,000 so that I can reach more of my medical goals!!
I’ve given it a lot of thought, and I’ve done a lot of research, and I have decided to pursue a diagnosis of – and treatment for – my CVID symptoms. This will make the biggest impact on my life right now, and I believe that this choice enables me to stretch my donation as far as possible. I have already researched several immunologists, and I have chosen the doctor I want to see. Some good friends of mine are also donating their time and transportation to get me to this appointment. I am excited to begin this stage of my journey. I am hoping and praying for success as I embark on a new path in my medical care. Thank you again, anonymous donor!
June 27, 2019
My gastrointestinal symptoms are now worse than ever. I’m losing weight every day because I can hardly eat, and I end up in significant pain for 5+ hours no matter what I eat or drink. From what I can tell, I could have gastroparesis as well as a nasty infection. To confirm these diagnoses, I do need testing. But I recently learned that the local indigent care program I am enrolled in does not offer GI specialists. I tried to contact other GI specialists outside of the program, but none of them could give me an exact cost for the treatments I need. They wanted me to establish myself as a patient there first. But I can’t, because I have no health insurance and no income. One receptionist estimated the cost to be several hundred dollars not including testing. That’s where the donations come in.
I am also still in the process of getting my many other comorbidities diagnosed, and that, too, is an expense. Under the best circumstances, I have to pay only for travel expenses. But the indigent program does not have the resources to tackle all of my comorbidities. In that case, I would also have to pay for copays, testing, and treatments out-of-pocket.
Donations are now more important than ever! Please consider helping me navigate the nuances involved in my indigent care.
Photo Galleries (1)
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.
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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