TL;DR: As of 4/22/18 I am going to be without income and need help covering my critical/lifesaving medical expenses.
It's weird for me to do this because i'm not really 100% open about what my health looks like with everyone, and the idea of asking for money is extremely difficult for me, but due to an emergency situation I have been encouraged to do this.
If you don't have time to read, the financials-related info is toward the bottom.
***I know this is really long. I am not generally upfront about what it has been like to live with degenerative Lyme for more than half of my life, and this is the first time I have publicly detailed my experience. It feels really important to open up about this so that people can be more aware of Lyme disease and how it affects bodies, as well as the frustration that comes from navigating the medical complex.***
I got a tick bite when i was 11 and started having symptoms throughout middle and high school. One day when I was 21 I collapsed at work and couldn’t put any weight on my left leg. The doctors misdiagnosed it as sciatica, and things kept getting worse. By the time I was 23, I was working at a coffee shop with braces on both of my knees, both of my wrists, and a brace on my lower back. I started having allergic reactions to almost everything I ate. I had to stop going to school and go on short term disability as my whole life came to a crashing halt.
I went to 16 doctors in three years. I had to hear doctors tell me that all of my pain and exhaustion and food reactions were because I was queer, because I was genderqueer, because I had unresolved emotional issues, and because I was depressed. No one understood that I was depressed because my whole life had shriveled down to the space between my bed and the bathroom. Even worse, not only my doctors but many of the people in my life thought I was making it up just to get attention.
One day I was getting a tattoo and was telling my artist (and now a dear friend) what was going on. She said that my story sounded identical to that of her partner, who had **chronic Lyme** and had experienced most if not every symptom that I was going through.
And then I went to a Lyme specialist. And then another. And then another. And I kept running into the same issue: I had severely progressed Lyme, and my body wasn’t processing oral medication for it because of coinfections (also carried by ticks and often present in individuals with Lyme) called bartonella and babesia, and that I needed to be on a course of IV medication for one year that would cost $35 a day. It was never going to happen. Reputable Lyme doctors aren’t covered by insurance and run anywhere from $500-$900 per appointment.
So I was on oral antibiotics for two years straight - a variety of cocktails, usually three at a time; mostly oral, and one twice-weekly intramuscular injection that felt like shooting fire into my legs. The IM was the only one that made a little bit of difference, but I backslid hard when it stopped.
My partner at the time and I moved to Philly for school. In the second week of my second year of college I had a seizure while I was running up the concrete stairs at the train stop and woke up in the hospital. The doctors said it happens sometimes randomly to adults. I had a second seizure 10 days later, at which point they decided it was necessary to put me on medication. If I miss my medication for more than 24 hours I am nearly guaranteed to have a grand mal. (This has happened on three occasions due to not being able to get in touch with my doctors for refills and one time for not being able to afford meds because of an insurance gap.) Hitting my head on the first two seizures caused a brain injury that will be there forever.
I was managing to get by for a little while, but I had to leave my job as a case worker in September because it was taking a very direct and serious toll on my health. Physically and neurologically it became impossible to do my work: I had/have word loss, really painful full body muscle spasms, a stutter that would sometimes be severe enough to prevent me from making phone calls to clients, a chronic kidney infection that causes frequent UTIs, muscle failure, dizziness, and chronic pain that at times renders me bed bound. I had to stop riding the bus to work because I was blacking out everyday on the way home. I also have petit mal seizures called absence seizures that cause temporary amnesia, and they become more frequent when I am stressed or tired.
I recently had surgery (unrelated to Lyme) and am mostly recovered, but just began a new type of treatment for Lyme that is basically wreaking havoc on my body.
I was receiving medical unemployment payments beginning on September 22. Last week (4/7) I received a letter that states that I have exhausted my unemployment benefits and will be cut off in two weeks (4/22/18). I am on Medicaid, but there are large aspects of my care that it does not cover, including any office visits or blood tests. In two weeks I will be without income and without insurance. (UPDATE: I was re-enrolled in Medicaid, but it is not covering large aspects of my care including office visits and some of my prescriptions. I still have no income. My IV therapy will cost $1000 a month, minimum, but more likely something like $2000 a month.)
In the spirit of transparency, I am going to detail my financial situation, so it’s clear where funds are and will actually be going. I have divided everything into general expenses and medical expenses.
Credit Cards: $150
Pet food: $75
Car insurance: $50
Dollar Shave: $10
Total monthly general expenses: $1800
One month of IV: $2000
One office visit: $200 (1x/month)
Monthly supplements: $60
Misc treatment expenses: ~$450/month
Total monthly medical expenses: $2710
Total yearly general expenses: $21,600
Total yearly medical expenses: $32,520
Total yearly expenses: $54,120
3% of $54,120 taken by GoFundMe: $1,623.60
Total for one year: $55,743.60
Typing that out feels like a punch in the chest. I have never been in a situation this dire and I can’t believe that this is real. That number is more than twice my typical yearly income.
My goal at the end of this period is to be in a place where I feel like I’ve made some progress in managing my Lyme. Because I haven’t been able to stop and focus and get the treatment I need, things have been getting progressively worse over the course of ten years. Aggressive treatment costs a lot of money and the piecemeal treatment I have been doing is basically pointless and not even managing - let alone mitigating - what Lyme is doing to my body.
Currently my treatment plan is photo ox via IV with glutathione twice a week, in combination with 13 prescription medications to treat epilepsy, anxiety, acid reflux, and a handful of other things. Depending on how effective the IV treatment is, we will likely add or substitute treatments. (Update: We are switching to IV antibiotics but I will not be able to begin until I get a picc line installed in my arm.)
I’m not putting this out there with any expectation. I know this isn’t a small number to ask for, but it is a (horrifyingly) real number. This number is what it’s going to cost me to survive and be in serious treatment for the next year, regardless of how and when it happens. The longer I go without trying to beat this, the more damage the Lyme does, both neurologically and physically.
I have been in treatment for ten years. I have $4000 in medical debt alone. It sucks.
Thank you so much for taking the time to read this. I can’t express how thankful I am to anyone who contributes even the smallest amount to helping me get better. Literally every cent gets me closer to safety. It sounds cheesy, but I mean it.
Here’s a poem:
When the storm starts
The drops start dropping
When the drops stop dropping
The storm starts stopping.
- Ingrid Missanelli-Lowrie
- Robert Axelrod
- Linda Thoman
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