I guess all trace of this medication is out of my system and I am suffering badly from LSE (systemic lupus). Under normal circumstances, I would be admitted to the hospital now, but I am forced to decide if I should risk my life by staying home or risk my life by getting treated. I reached the point of constant vomiting this week. I built an apartment onto my house for my mom, but I’ve been staying on my side since I’ve been sick-just in case, and she started writing down each time she could hear the sound of me vomiting through the wall. It’s not scientific, since she can’t hear me from part of the apartment, but yesterday she reported hearing it about 5 times per hour. Fever and pain, too. The scary part is that I can’t keep down other needed medications. The disease is in my brain, and I need to take medication to prevent seizures, to enable me to control my speech and balance, to keep my blood pressure level because the part of my brain that tells your heart to do what it is supposed to do on its own has been impacted. I was also getting severely dehydrated which has, in the past, caused liver and kidney issues as well as heart failure. My heart did stop once, and that incident was caused by severe dehydration from this exact same thing. My stomach no longer digests on its own, either, but I was not able to keep even fluids down, so this wasn’t a digestive issue. I was bringing up saliva. I’m hoping it’s safe to say this here, but in desperation, I turned to a friend for a “natural” remedy for nausea. I do have Zofran, but it wasn’t working. My doctor prescribed Marinol, but NJ pharmacies won’t fill it. He’s in Philadelphia. Today I was able to keep water down as well as my medication, so that’s a huge step toward recovery, but I am furious that this moron is killing CV19 patients AND lupus patients to make a buck and to pretend he knows something that he doesn’t even slightly understand. I’m furious that his supporters and the GOP are allowing this to happen. I’m furious that I see terror on my kid’s face while he sees my dripping with sweat and then shivering with cold, puking into a bathroom garbage can, conscious that I’m the only living parent he has left.
What the hell did they think was going to happen when they prescribed an immunosuppressant to treat a virus? Of COURSE it’s killing critically ill patients. What the hell did they think would happen to people like me whose immune system attacks internal organs and bodily systems (like digestive, neurological, muscular/skeletal, etc) when they confiscated an approved and proven (yet dangerous) treatment?
I’m really, really angry!
(And yes, I realize that this sounds like CV19, but having lupus is like having the flu everyday. There are other symptoms like rash and nose/mouth sores, and I have those, too. We’ve also been locked down completely for over a month.)
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