Sunday, March 22, 2020


I'm miserable and scared out of my mind right now. I'm an at risk patient cuz hEDS makes me vulnerable to pneumonia. I guess CORVID-19 really overwhelms the lungs and damages them and can cause heart issues, which I already have a mitral valve prolapse, so if I get it when there's less ventilators available, I'm dying for sure.

My life was kind of flipped upside down the last month or so.

My mom was diagnosed with a huge pituitary tumor, and had it removed about two weeks ago. My mom hasn't really been honest with me about her medical issues, and she's 73 this year, and she's been having some other troubling signs of dementia that have been getting worse the last two years. I'm hoping that as she recovers, she hopefully will get some improvement, but after this last week she confused her doctors appointments up and we missed them. If anyone has any advice with talking to a parent about dementia please let me know? I'm struggling. 

I think this summer my brother is going to have to come home so we can try to move her into assisted living or at least figure out how to watch her finances so she doesn't start buying things too much or anything like that. I'm worried about scam calls too, how often she gets viruses on her computer, and a lot of other things. I'm terrified she's going to get sick one of these times I take her to a doctor's appointment in the hospital.

At least I have maneuvered well enough in the medical system to help my mom. I know how frustrating it is to not remember things so I can talk to her a little about it. I told her it's okay to need me, that it's okay to not be independent anymore. Trying to dismantle some of her ableist upbringing is difficult, but I hope she will open up more so we can talk about those things and she won't have to feel alone. When your body fails you, especially your mind, it can be terrifying. I encouraged her to find a therapist that will help her process the trauma of being sick.

Jeff lost one of this jobs recently too, so we are a little unsure of how we're going to afford anything besides rent. If you can donate I could use the help, especially for gas to drive back and forth to my mom's, food, meds, and art supplies so I can cope with the world ending and my mom getting sicker at the same time.
By things from my etsy:
I have several wish lists on Amazon, here is the most important one but I'll appreciate anything from any of them:

1 comment:

  1. Damn! That sounds like an overall cluster of awful. Im sorry you've been dealing with all that. I hope everything is getting better now.