My name is Avery and I am making this on behalf of my partner, Jay, who for a very very long time has been suffering from what we believe to be a mast cell disorder (mast cells are a type of white blood cell that cause your body to react defensively when it senses "invaders"). I am also currently writing this in the hospital as a cry for help, as we are both at the point that we just don't know what else to do.
Jay, and I have been together for about 4 years now and throughout this time we have known something is wrong with their health. We have been to multiple doctors - none of them could figure out the exact problem and we were sent on our way without any kind of solution. To make matters worse, we were also living in an abusive household when we began to seek treatment for Jay, and had many barriers keeping us from seeking more advanced medical care. Due to Jay's painful and debilitating symptoms that we could not find help for, I am the only one who was/is able to work; this hindered us from seeking further help.
Finally, in March 2020, we were able to make it out of our abusive situation, but unfortunately things took a turn for the worst just when we thought we could begin building a new life together. Jay's symptoms worsened, impacting their ability to function for weeks into months. They felt constantly ill and their food intolerances doubled, tripled, until it became easier to name what they could eat instead of naming what they couldn't. Physically and mentally this was a huge blow. We explored antihistamines and mast cell stabilizers to get a handle on the situation, which worked well enough at first.
In June, we moved onto a beautiful piece of property with a second-hand camper. We have been building toward living off the grid, a dream we had always shared, but due to being laid off multiple times because of the pandemic, we could not afford to fund electricity, etc. for ourselves, our dog Odys, and our rabbit Gretta. We also found that there is mold growing in our camper due to the weather conditions and the fact that we cannot afford a good enough cover to keep our old camper dry.
As time went by, the antihistamines/mast cell stabilizers they were using started to lose their effect, and Jay's symptoms began worsening and worsening, taking a grip on us and the life we so desperately want to build together. It became evident we needed to seek specialized care; this pain and trauma has taken away Jay's ability to eat, to drink, or do anything that they enjoy such as something as simple as going for a walk. We were fortunate enough to get an appointment with a mast cell specialist.
However, about a month ago, we found that Jay could not eat anything more than a small meal a day; their body ejected anything they put into it. We sought immediate medical attention, but bloodwork and multiple other tests returned normal while Jay continued to suffer. Their blood pressure was sky high, they were in pain, and they still could not eat.
Last Friday while I was at work, Jay called me because they could not stand. Jay was admitted into the emergency room. We have been in the hospital for nearly a week as Jay has been on an IV to keep them alive. I, myself, have been unable to work for the five days that we have been here. The many doctors that have examined Jay are at a loss, each with their own ideas but none of them certain. We were told this is the rarest case they've seen. Last night, we were seen by a final, different doctor, who believes Jay is suffering from a mast cell disorder, possibly systemic mastocytosis. These disorders can cause your mast cells to believe anything and everything is an invader to your body. Foods and smells, temperatures, hormones, ANYTHING can trigger reactions that range from mild to life-threatening. This aligned with Jay's long-going experience.
We have been able to bump their appointment with the mast cells specialist up by a day, which leads us to now. Jay is being discharged, but they can still cannot eat or drink. We were told to return Jay to the hospital after their appointment with the specialist if we do not see improvement.
This has caused us to be pushed back even more financially, as I have not been able to work and we will have medical bills to cover. To add to this, Jay needs specialized therapy that we must pay for out of pocket. We are also very aware that due to the rare nature of Jay's symptoms, it may be a very long time of seeing specialists and trying different medications before they find long-lasting relief. With all of this on our plates, I remain the only one of us that is able to work, but because of the pandemic and Jay's vulnerable state, I have to be very cautious. We are seeking help to fund Jay's current and future treatment, and we need help to build a safe and comfortable place for us to live together without worry.
In short, this has been a very long and hard journey that is not close to over. If you are able, please help my family as we navigate this incredibly difficult and taxing situation; we have fought long and hard to be happy together, and we are finally at the end of our ropes.
- Gabrielle Murray
- orla hoey
- Catheryn Chang
- Michelle Stark
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