My name is Rae. I am transgender (he/him) and over the last few years I went from a long distance runner to chronically ill. I still work full time with my three pets and partner, but after having surgery recently, I was left hung out to dry with my multiple rare or complex conditions (Stiff-Person Syndrome, Ehlers-Danlos Syndrome, Adrenal Insufficiency, POTS, Dysautonomia, Pernicious Anemia, Iron Anemia...to name a few) and figure things out for myself. And honest, the help has been invaluable.

I only budgeted really for the surgery and some appointments after, but having the peace of mind of being able to have help when I almost needed to go to the hospital and not having to go alone or having help getting to the store or a doctor appointment and not worrying about falling has honestly been a huge weight lifted from my shoulders. It also has been helpful in keeping me healthy during my recovery, since my health has affected my appettite too and having someone make sure I am eating and have an appetite as well as making sure I am hydrated to prevent adrenal issues and help with my dysautonomic issues has been life saving.

Please excuse the ugly crying. But honestly, I had a breakdown realizing a lot of this.

It's also helped a lot with my mental health. I feel less worried about needing to go somewhere in case of an emergency by myself or needing to constantly monitor things on my own. The reduction in anxiety surrounding my health has made my for fewer SPS flares ups. I've had a few regardless during the recovery and some close calls from other issues, but overall, making it so I am not worried about my health 24/7 and not having to worry constantly has actually brought me to tears.

I want to find a way to continue to be able to afford some of the help--not to the same daily needs that I've had--but a few times a week and someone to be there for appointments and the hospital, especially because of my severe PTSD from hospitals and doctors, which is nearly impossible to get a legitimate diagnosis for.

The funds will go towards maintaining some of the help that I have now and keeping access to the resource that has made a difference in my life in a way that I wasn't expecting. I was afraid to reach out and hire someone to help me to begin with. I almost was begging my mom to field phonecalls and vet people for me. But this is something I realized that I should've done a long time ago.

Additionally, funds will be used to help with some of the medical bills I've incurred due to the hospital whose negligence is the reason I need brain surgery and their refusal to work with my PCP to appeal the claims as the ones who have submitted the claims. Admittedly, if I could realistically raise enough money to take them to court, I would ask for more.

The CNA help won't be to the same degree I had after surgery now since I'm not recovering from anything major like removing an entire organ--though I will need to prepare for the help after the brain surgery, but having the support available and having someone who can check in a few times a week and be available if I need to go to the hospital and my IVIG treatments, etc. The cost would be much less than what I am paying now but I'd like to keep this going so I can continue to get the support I need and this is out-of-pocket care.

Thank you for your consideration and help. I truly do appreciate it.