Elliott's Extended Recovery Fund

First and foremost, thank you for reading this. It’s been a very long two years and I’ve extinguished all my resources, so this is a last resort to buy me a little extra time. If you've noticed I've been largely missing, this is why.

 

This will be relevant to everything else, so a brief intro: I have a rare immune disorder called MCAS , or Mast Cell Activation Syndrome. On a day to day basis, this on its own can be fairly debilitating. My body is overly reactive to a vast array of allergens, making me hypersensitive to medications and a high anaphylaxis risk, among other things. Something incredibly basic like being near someone wearing cologne can trigger an asthma attack, severe gastrointestinal symptoms, skin irritation, tachycardia, and neurologic symptoms that can take days or months to clear up. It’s managed reasonably through diet and medication, but things like infection, stress, and bodily trauma can all cause multi-system symptoms that put my body into crisis and render me non-functional. As you can imagine, this makes discovering and treating me for other illnesses extremely difficult, as my symptoms don't often present normally. On to the last couple years.

 

If you know me, you probably know I fundraised for top surgery early in 2020. Despite the surgery being scheduled a month into the pandemic, I was able to have it done on April 29th. It went well and I healed fully. I felt lucky to have been furloughed at the time and able to recover without much added stress. By August I was officially laid off from work and in strict lockdown as a high-risk individual.

Then, around December that year I began to have chronic bladder pain. I saw a doctor online and they prescribed Macrobid to treat a UTI. A couple weeks later the bladder pain was gone but I was feeling extremely unwell. I started having increasingly severe upper back pain on my right side. By January 2021 I was being woken up in the night by tachycardia episodes, feelings of impending doom, and bizarre changes to my conscious thoughts. I was also having days long bouts of insomnia and persistent asthma attacks. I absolutely did not want to go to the doctor in the middle of early lockdown with no vaccine in sight, so I hoped it would resolve on its own with rest.

By the end of January I was having tachycardia episodes that pushed my heart rate up to 196bpm. I finally went to the emergency room, but they couldn’t determine what was causing the episodes. I was referred to several different specialists for a myriad of tests that were inconclusive. I ended up going to the ER again at the start of February, in mid-February for what the paramedics thought was a heart-attack, then again in early March for worsening of previous symptoms. I was consistently dehydrated and was only finding relief through IV fluids and medication. On March 2nd after more testing, an ER doctor finally concluded that I had a kidney infection. I was started on the only safe antibiotic I could take, but ended up having a severe reaction to it that landed me back in the ER on March 9th. After 4 IV medications to counteract some of the side effects, and re-running my tests, I was allowed to stop the medication. I continued to have full-body muscle twitches for 9 months, a side effect that didn’t seem to want to go away, but otherwise I was feeling better.

 

Fast forward to April, when I start having a mysterious pain in my right hip and side. The pain slowly gets worse, and in May it's keeping me awake every night. I set up an appointment to get acupuncture, hoping it could fix what I thought was a muscle issue. On the walk home from one of my appointments I started to feel incredibly sick, and by the time I got home I was in unbearable pain. Worried I had appendicitis, I rushed to the ER. Completely unbeknownst to both of us, my acupuncturist had accidentally ruptured an ovarian cyst while doing a hip release stretch. A pelvic CT and 2 ultrasounds revealed fluid in my abdomen, as well as unidentified masses near my right ovary and a retroverted uterus - things I was totally unaware of up until then. I immediately needed to book a specialist to have more tests done, but because of COVID the process was incredibly slow. The tumors caused me constant pain as well as triggering a persistent MCAS flare-up that left me bed-bound for months. Even so, the OB/GYN determined a hysterectomy on medical grounds was not a necessary surgery, and that my only option was to have the procedure done as a gender-affirming surgery - a long process with many extra steps.

In the middle of trying to schedule this major surgery, two of my wisdom teeth had become abscessed, so in July I had all 4 wisdom teeth removed at the risk of losing the adjoining molars to infection. Because of the difficulty of the extraction and my MCAS, the procedure had to be performed in an OR under general anesthesia, an added cost of $1,350. It ended up being an out of pocket total of $4,685, and my unemployment had just ended.

It took until October 28th to get through the meetings, paperwork, and tests required to have the hysterectomy, after which I had 8 weeks of recovery. I found out later from the surgical microbio report that I ended up having a PCOS, uterine fibroids, cervicitis, endosalpingiosis, and many patches of precancerous cells. After the procedure I felt immediate relief.

Now, this February 1st, I'm scheduled for a final surgery to repair the structural damage and inflammation in my sinuses that has prevented me from breathing out of the right side of my nose for several years. The projected recovery for this last procedure is around 2-3 weeks. I am very relieved to be coming up on the end of 2 years of procedures that have kept me in a constant flare-up and unable to work. I had tried to plan as much as was possible to give myself a 3-month buffer of savings after my final recovery, but due to COVID, family emergencies, and insurance issues, 3 of my surgeries were delayed - one of them for months.  

It’s been a full time job being my own patient advocate while being both ill and in what seems like perpetual recovery. This whole ordeal has depleted the entirety of my savings and maxed out all of my credit cards. As of today, I’m down to $150 in my bank account. The immense support of very loving friends has kept me out of dire circumstances, and gotten me to and from a hundred appointments. I am constantly grateful for them and all they've done in caring for me in the middle of their own stressful lives. I also want to acknowledge I have been incredibly fortunate that state assistance covered much of what could have been an unimaginable expense, as well as helped me pay for food. Despite that, I will not have enough to cover rent, medication, or taking care of myself or my cat beyond February. My last day of employment was March 4th of 2020. The pandemic, surgery delays, and long recovery times has made it impossible to resume work -regardless I have still had to pay around $25k in rent during this period, and many other expenses related to my health. 

 

If you’ve read this far, thank you. The money I’m asking for would be to pay rent, lessen my debt, and afford medication and ongoing treatment until I am recovered enough to look for work. I would also like to be able to treat the additional chronic pain being bed-bound and having major surgery has added. I am looking forward to spending most of 2022 out of the hospital and returning to normal life!