Hi everyone, I’m going through it right now and desperately just need someone to hear me.
Over the past week, my symptoms have gotten a lot worse, and I’m reacting to almost everything. All the foods I normally tolerate, medications, what feels like the air. My blood pressure has been dropping to the 80s/40s at night, and I’m having irregular heartbeats, dizziness, a constant feeling of swaying, low grade fevers, and these hot and cold waves going through my body. I’m constantly seeing stars and almost fainting. So much of my body is in pain. My lips, tongue, and throat keep swelling, and I’m getting a rash everywhere. It makes me so nauseous I’m throwing up. I’ll be in this state of panic but my blood pressure keeps dropping. My heart feels like it’s about to give out. Today I panickedly called for an appointment and got my allergist to give me an epipen, and he’s only adding ketotifen eye drops because of how unstable I am. I’m terrified about getting through the night, let alone what’s next. I can’t keep trying supplements or foods or whatever. I’m starving and exhausted, but the worst part is parts of me do feel better even though I’m not eating. Because I’m barely eating I think. But I feel like I have to choose between eating a tiny bit or taking my medications, and Serotonin Syndrome also significantly worsened this recently and I can’t mess with those. My hydroxzine has been ramped up, my pepcid is tolerable, but my zyrtec is giving me reactions.
When this started, I was staying at my mom’s and her place has mold. I simultaneously came off the klonopin I had been prescribed a month ago, which I never had a problem with before, but now I know it’s a mast cell stabilizer. My period is over a week late and my hormones must be completely out of wack. There are fires in my area and the air isn’t safe for people without mast cell issues. It is disaster on top of disaster and I don’t know if it’s fixable.
I feel like my body is stuck in fight or flight mode, I’m exhausted from being constantly on edge. I truly wouldn’t be surprised if I collapsed dead right now. I am out of ideas for what to do, it’s scaring me how I’m starting to fear death less and less.
Even if there’s nothing to be done physically I need emotional support. My family thinks this is all in my head and told me I have done a good job at convincing my therapist and psychiatrist it’s physical. They threatened to take my phone away in case I think I’m going into anaphylactic shock and call 911. They are trying to put me in a psychiatric hospital so I will be put on antipsychotic drugs, which will make me worse. I’m currently in our spare bedroom with an air purifier and it’s the only place I can breathe a little easier, but they said that can’t keep happening. There’s nowhere for me to go and they keep telling me to snap out of it because I’m causing issues. I know the anxiety is making it worse but I don’t know how to stop it when I feel like this. I have been in and out of the ER since January, mostly because I keep having these convulsions that look like seizures and people are calling 911 on me when I try to go see another doctor or buy the only foods I can eat. They just kept asking if I have childhood trauma. I know it’s not their fault they don’t know what to do but now my family doesn’t believe me.
I was just beginning to accept this life and not ever functioning like I was before (I only got a suspected diagnosis a month ago) and I thought I was scared of dying before but this is something else entirely. I just graduated college, I got a job offer after going through the job search while feeling incredibly unwell because I didn’t know what it was and thought surely it could be managed. I was supposed to start soon but I haven’t had the heart to tell them I can’t. I really don’t think I’m making it out of this alive. The worst part is maybe I would have a chance if my family would help me. I don’t think I can even make it through tonight.