- C
- C
- C
Hello! I am putting the FUN in Autonomic DysFUNction.
(and the FUN in FUNdraising.)
My name is Alicia.
You might remember me from such fundraisers as:
"Help, My 3-year-old was diagnosed with severe Autism and my insurance doesn't cover it" (2012, Indie GoGo)
and
"Help, I've been raising and supporting my amazing autistic teen on my own for 10 years, my teen is now mainstreamed with an IEP and supports, and now the ex-hubs wants custody?! and I need a lawyer" (2021-2022, Go Fund Me)
and
"Help, COVID tried to kill me TWICE, I missed several weeks of hourly-waged work, found out I have heart defects, broken teeth, and I can't even make rent, and now I have a fun new diagnosis of Autoimmune Dysautonomia AND POTS. (2024, Go Fund Me)
I am shaking as I type this - because I am nervous and sad, and also my nervous system is wonky. Also because, my life sounds like a country song. Perhaps an "alt-country" song?
I am in need of some help. Dear Reader, if you are unable to help, would you pass this along?
I will be out of work through Mid-October. Currently I am on FMLA, and have just used my two weeks of PTO. I will not have paychecks after August 12th. Will be eligible for Short Term Disability in Mid-September. That will give me some of my income back (if approved) and allow me to keep my healthcare benefits (because this is the USA - where your commercially-based healthcare is tied to your ability to work...so if you get sick, you lose your coverage? Weird, right? Anyway...)
I need to catch up on rent, catch up on bills, and stay afloat during this time of (hopeful) recovery. I need to be able to pay for my health benefits AND finally do the PT/OT, and Speech/Language Pathology I was supposed to do last summer when I declined rapidly - starting with the ability to stand up without getting pre-syncopal. I could not afford to take time off work to do the therapies, and I could not pay for them.
If you know me, you know that my kid means everything to me. I am trying to maintain some semblance of normalcy for my amazing and sweet teen. I feel embarrassed to ask for help cause I know others are struggling too.
I have plans to give back to my community via some volunteer work in the near future if my body and mind will let me. If it goes well, I will turn it into a career.
At this time, I am considered disabled from my own occupation (Registered Nurse) but not from ANY occupation, though I lack stamina and the ability to have set-in-stone start and stop times. I need to re-think my life and career.
I require a cane for short distances, a rollator for longer distances (so I can sit quickly if I feel the syncope coming on), and daily use of Oral Rehydration Salts, as well as Abdominal Compression and Compression Socks. I get short of breath with inclines and stairs, due to the POTS. My balance is not the best at this time, and I am a FALL RISK, which is kind of hilarious to my nurse friends. ( I can take a joke. haha, yes, put the yellow band on my arm...)
This fundraiser will help me immediately keep a roof over our heads (am short on rent!) and keep things on and running (car, electric, water, etc.) and basic stuff. I am also figuring out how to navigate all the medical bills that have piled up. It's a lot and my brain is just...fried.
I have wonderful doctors, nurses, and am in weekly therapy to help navigate these uncertain times, and I have a medication list that would make an octogenarian feel a bit better about theirs. I got an iron infusion and may need more - research is showing that keeping your Ferritin above 50 (I was hovering from 6 to 9 there) helps to relieve symptoms in POTS patients.
I refuse to lose my sense of humor.
Please check out my "merch" store:
Before I became too ill to stand up on stage, I played in a band called Trash Signal - and oddly, we had written a song which we called Syncope, and I wrote lyrics about Falling. I had heard of Dysautonomia from patients of mine, but never dreamed that this was MY future diagnosis. So in that song, you can hear me screaming at the end "Dysautonomia!!! DYSAUTONOMIAAAAAAAAHHHHHH!" because by the time we were able to record it, I had been told that this was, in fact, my life now.
I dedicate this song to anyone who has experienced Medical Gaslighting. Did you know it took 10 years from the onset of my symptoms in 2006 to a car accident in 2016, which revealed my 3cm thyroid tumor, to get an official diagnosis of Hashimoto's Thyroiditis? They had the blood test and the biopsy results. Guess what, friends...it was not just "anxious and depressed."
Ok, so, please donate if you can, if you cannot, please share, and watch out for updates. Know that I cannot do this without you, and I thank you.