So, tell me a little about yourself (said to me by no one ever…)
The Quick Version:
I’m Janni – a 58-year-old person with autism who has been mostly home-bound for over 5 years now. For 4.5 years of that, I was trapped in an upstairs bedroom, with no way to even access the lower level of the house or to go outdoors (except via ambulance). Due to several autoimmune diseases, and some nerve, spine, and back issues, I had been largely bedbound, and wheelchair dependent (I am still in a wheelchair for the most part). I am trying my best to make it from month to month living on a disability stipend and about $100 a month from the Georgia Food Stamps/EBT program. To say that I have been struggling is a gross understatement, but I am thankful for the help I do get. The good news is that I am now beginning to see some improvements in my health due to a special nutrition protocol and regular, ongoing physical therapy. I have even been working on walking again! I have a long road ahead of me, but I desperately want to ride it out and continue to find ways to improve my quality of life!
This website is my ongoing story…
The Longer Version:
Most Recently…
I have had a lot of miscellaneous past lives (or phases, I suppose, would be more accurate) in my time on this planet. I guess I dabbled in a lot of things whilst trying to find my place in the world. The last thing I did that was pretty awesome, was to obtain two higher education degrees – even if it took me until my fifties to do so. I got an AA in Theatre Arts in 2015, then immediately moved to London that autumn to start my BA Hons in English Literature (I was planning to study Shakespeare, and the UK is kind of THE place to do that). I completed that degree in 2017, and (much to my disappointment) had to move back to the States in December of that year.
The only good thing about moving back to the US was being able to be with my elderly father, whose health was becoming more frail. As such, I decided to stay here to care for him and I would do my post-graduate degrees online. All the best-laid plans, though… right? Sadly, not only could I not pursue my post-grad because I couldn’t work out funding, but I also ended up getting ill in 2018, myself. Everything had to be put on the back burner.
My health took a bad tumble – I was eventually diagnosed with six autoimmune diseases, as well as a condition called pseudotumor cerebri. I ended up in intense pain and misery pretty much 24/7. I was mostly bed-bound, wheelchair dependent, and totally housebound. During all of this, I was also attempting to care for my father, who was in the late stages of the lymphoma he had lived with for over a decade. That time period was an absolute nightmare. I rarely saw other people, as I was stranded upstairs in my bedroom, in a house that wasn’t built for accessibility, and had to manage my Dad’s care via strategically placed security cams and in cooperation with his hospice carers who were here for about an hour each day.
Dad passed away in October of 2022. One of his last wishes was for me to do everything in my power to try and find help for my medical situation. I had not been able to get much help for myself – partly because I couldn’t find any doctors to treat me at home. I couldn’t leave Dad for very long (and towards the end, not at all), and getting me anywhere in my wheelchair proved close to impossible. I live in a small town – not near any major cities, and we have no public transportation here. I am unable to climb up into an SUV or truck, and I live in a place where it seems to be a prerequisite for all people to own these types of vehicles.
Since about March of 2023, I have been taking steps (some baby steps, some much larger) towards trying to help my situation. I am still in a wheelchair, but thanks to a special nutrition protocol (I am on (the Wahls Protocol), improvements are happening! My inflammation is down, my weight is coming down, and the nerves in my right leg are reawakening. I’m in physical therapy twice a week and I am working on little exercises at home to help me get stronger. I now have a dear friend locally who is able to take me to some medical appointments and all of my PT sessions. He has a normal car that sits low to the ground, so I am able to get in and out of it, and we can use my folding wheelchair which fits in his trunk. He has been instrumental in my being able to make positive strides towards my health and well-being! He has done so much for me, and I can never repay his kindness, nor will I ever feel that I deserve it. (Shout out to Ford – I love you, man… and thank you!)
My Previous Phases…
In my past lives, or rather, phases of this life… I have worked in retail, I worked in IT, I worked in Marketing, played in garage bands, did some acting, drew and painted, played ice hockey, kayaked, went hiking and camping, ran in local 5k races, taught kids at a local church, and was obsessed with Marvel comic books and memorabilia (still have some of them – none worth any real money, but sentimental to me). I used to also do volunteer animal rescue stuff (mostly transport). I have been all over the map and then some.
Even my education was erratic. I struggled so much in primary school, had loads of meltdowns, and was bullied quite badly. I had quite a lot of childhood trauma, a lot of which I am only just now coming to terms with. I barely squeaked out of high school, and then I bounced around from college to college, never quite completing any course of study until I was finally diagnosed with several learning disabilities as an adult.
Yep, I am a bit of a hot mess. I have ADHD, dyslexia, dyscalculia, dysgraphia, dyspraxia, auditory processing disorder, sensory processing disorder, obsessive-compulsive disorder, anxiety disorder, panic disorder, depression, and… I am on the autism spectrum. But to be fair, I’m pretty darned impressed that I made it as far as I did, academically, with that load of stuff on my shoulders. It also explains a heck of a lot. No wonder I flitted around life with the attention span of a gnat! The good thing is, once I DID get diagnosed (not all at once, mind you… it took a long time to discover it all), I was also given the tools I needed to set myself up for SUCCESS (academically speaking), so that’s how I was able to go “back to school” and finally excel at something! It helped that both my community college, and then university afterward were incredibly accommodating and they supported me every step of the way.
Back to the Here and Now…
So WHAT is Jannipants doing NOW? Well, I am currently working on a chronic illness support blog, writing articles for Medium on chronic illness, and trying to launch a part-time Language Arts tutoring practice from my home. Additionally, I have been creating planners, journals, notebooks, log books, etc… that I try to sell on Amazon. Most recently, I have launched a small tee-shirt business online through Spreadshirt. I only have a few designs, but am adding more all the time. AND… I have started a YouTube channel alongside this website, but it will likely be quite a while before, or even if I will ever be able to monetize through it. (I don’t even think I have any followers yet. LOL!) I need to get a bit of equipment to be able to make videos of high enough quality to be able to compete on that platform.
Basically, I have been trying to find little ways here and there, online, to earn a few extra dollars. Nothing is panning out just yet though.
With all of these autoimmune diseases, I never know from one day to the next how I will feel – so being able to work at a full-time, onsite job is not possible for me at the moment. This is concerning and frustrating because I only have my disability stipend – and it isn’t enough. I am terribly grateful for it, but after my housing and utility bills come out of it every month, I have about 76 cents left over. That doesn’t even account for food and medicine, household supplies, etc… so I have had to constantly “beg” online each month for people to donate money to me – just so I could meet the most basic of needs. I am incredibly thankful for the generous souls who have helped with those things so far, but this situation isn’t sustainable long term (nor should it have to be). So… I keep trying… I keep looking… I keep hoping… I’d love to be able to support myself and be off of disability altogether, but I’m afraid even if I did, I would have absolutely no health insurance, because it’s VERY expensive here – cost prohibitive for a lot of people, and it would be for me as well.
But… I just keep trying to get up every day and make an attempt to do something that might help me in some way… because I HATE being a beggar, and I hate burdening everyone else with my issues. There has GOT to be a better way.
This website is my ongoing story. It’s just the story of a person with a whole slew of challenges (medical, financial, mental, etc…) who is simply trying to find a way to make it in the world. A world in which darn near everything seems stacked against people like them. It’s a place for this person to cry and vent, to raise awareness, to be completely raw and honest, to try and uplift others, and to share small victories with everyone as they come along. Join me on my journey, won’t you?
FTC NOTICE: As an Amazon Associate, I earn from qualifying purchases. If there are links from this site to Amazon products, I could possibly earn a small commission from sales.