It's a Mad Mad World
Perhaps it's up to us to change the way we work with disabilities and chronic diseases
It's only Tuesday, but somehow this week has turned out to be much more stressful than I expected. My car maintenence cost much more than I anticipated today, and it set me back much further along with yesterday's doctor appointment and all of the pain relief needs for my left arm. I'm looking forward to my upcoming knee appointments and physical therapy, but I'm also feeling very stressed out wondering if it will all work out.
Today, I also finally had my interview to qualify for assistance from SNAP and Families First, but they said they would expect me to close all of my crowdfunding for my lipedema expenses. I asked them how I would pay for all of my expenses since the whole reason I have to use crowdfunding is because 1.) the expenses just to maintain my chronic conditions are so expensive, and 2.) I have been unable to earn enough to cover my medical expenses and Sophie’s needs when my illness keeps me so busy.
The interviewer gave me a very out-of-touch lecture about “having to make tough choices as a single mom…” as if I haven't already been making tough choices as a single mmother. Or a single parent battling so many health issues.
She also tried to say I would have a better time working fast food right now than trying to recoup my writing career, and I had to explain once again, how my currently limited mobility doesn't allow me to do that kind of work. Then she warned me that disability would likely take years and an attorney to get approved and how I still wouldn't be able to crowdfund for medical expenses because they take that very seriously here in our county. She called it “double-dipping for help,” and tried to justify her stance by saying that any medical treatments I need that are not fully covered by health insurance must not be that important anyway.
It was a deeply frustrating and depressing conversation. You would think it's a good thing that I'm explaining how much I don't want to be on any government assistance, and how I want to work and get back on my feet by doing the work I am good at, and the work that brings purpose to my life, but no, it was clear they thought that was too strange.
I am trying not to be too discouraged about all of this because I knew at the beginning of this year that improving my mobility and getting back on my feet would be an uphill battle. I suppose this is the really tough portion of that mission.
Strep throat has set me back a bit more than I would like but I spoke with my trainer at the Y and we'll meet again on Friday.
It still feels very awkward and self-indulgent to write about everything that's happening lately and how I'm trying to improve my mobility to reach specific goals by the end of this year, but the harder things get the more I wonder if it isn't the universe (or what have you) pushing me to seriously document this path.
Because of my mobility issues, my lipo-lymphedema swelling, and arthritis pain, it takes A LOT out of me to get to the gym three days a week. It will take a monumental effort for me to go even more often. Yet that's what I think I need.
It also costs a lot of money to work with a trainer, but I'm not yet able to navigate the gym on my own. It even costs more money to keep up with extra laundry, more showers, and gym clothes. Working out increases my risk of additional injuries because of the EDS involvement, and it raises my expenses for simple needs like ointments and compression adhesives as I sweat more and have to be even more vigilant to avoid skin infections.
When I think about all of these things, there's that part of me that realizes that turning it into a job (by documenting everything I'm doing) is probably the only way I'm going to get through it.
That's very scary, though. It's scary to be so vulnerable and delve deeply into a tough content area that's rife with diet culture and cruelty against fat bodies. It's scary to wonder if I will fail, if I will disappoint lots of people online, or disappoint Sophie, etc.
I keep feeling like I'm backed into a corner where the only way out is to revolve my life and simply work (for the time being) on my fitness. On showing one example of the way fitness can change a person's life, despite having advanced lipedema and lipo-lymphedema.
I honestly don't know if I am going to be able to make it work when it comes with so many expenses. If I can make it work, however, I believe it won't just make my life better, and Sophie’s life better… but we could help other people too.
Maybe it's time for me to quit feeling so guilty about where I sense I need to go and what I sense I need to do? Maybe it's time for be to be more confident about tackling these goals, so I can stop feeling so awkward about being yet another fat person posting a fitness journey when there are so many other injustices in the world that need attention too.
Oof. That's my stressed out mind lately.
What do you think?
I admire your efforts to become healthier. It's ridiculous that you were told you should work in fast food! People are ignorant, or just don't care! It's a shame!
Documenting your health journey is a great idea and an admirable project! I was disgusted by the "conversation" you had to endure and the lack of compassion in our broken Healthcare system. Your voice speaks for many disabled and folks with chronic health conditions. Don't give up! ❤️🩹