Chronic Illness Spoonie Janni .She has a very short, buzzed off hairstyle. She is wearing eyeglasses and smiling at the camera. She's wearing a black jersey representing her beloved Charlton Athletics football team.

Who Am I?

Hi, fellow chronic illness warriors! My name is Janni, I’m a Spoonie, and I have the following autoimmune diseases and chronic health conditions:

  • Sjögren’s Syndrome
  • Hashimoto’s Thyroiditis
  • Systemic Lupus Erythematosus (SLE)
  • Celiac Disease
  • Antiphospholipid Syndrome (APS)
  • Mixed Connective Tissue Disease (MCTD)

In addition to the above, I also have a condition called Pseudotumor Cerebri. Lastly, I have some spinal stenosis and ongoing disk issues in my back and neck.

My Abbreviated Story

The Ugly…

I was largely bedbound, housebound, and wheelchair dependent from 2018-2023. Trapped on the upper level of my small, inaccessible, two-story home, I became isolated and depressed. Can you imagine being in the same room for years? Subsequently, it affected my mental health so negatively that I came close to ending my life. Undoubtedly, the fact that I was the sole caregiver for my terminally ill father saved me. Dad had Hospice care for about an hour a day, but the rest of the time, it was just us. I did the best I could, but he definitely deserved better. It was an uncompromisingly dark and challenging time.

The Turning Point…

Dad passed away in October of 2022 at the age of 95. He was my best friend and I miss him every day.

In order to honour Dad’s wishes, I began working to make positive strides towards bettering my health. In March 2023, I began the Wahls Protocol, a special paleo-based nutrition protocol for people with autoimmune diseases. Committing to this lifestyle change was undeniably the best health decision I’ve ever made. This nutrition protocol is helping me to lose weight and reduce harmful inflammation in my body due to autoimmune disease.

I’ve also had some help making my house more accessible for me, allowing me to safely access the lower level. These accessibility modifications allow me to leave the house for medical appointments! I remain largely housebound and wheelchair dependent, BUT big changes are on the horizon! Currently, I am in physical therapy, working on learning to walk again. It will be a long road, but it’s one on which I am grateful to finally be travelling.

The Ongoing Reality, and More Ugliness…

Outside of physical therapy, a medical appointment, or hospitalization, I still rarely see other humans. The Spoonie life can be incredibly confining. Flares, pain, recurring illness, and compromised immune systems are all obstacles that Spoonies may regularly endure. These things can prevent us from being able to leave home for days, weeks, months, and in some cases, years.

Additionally, after the death of my father, my already precarious financial situation became exponentially worse. The two of us had been pooling our resources to pay the bills every month and were able to squeak by – only just. Since Dad died, I only have my limited disability stipend from the government (Social Security Disability Income, or, SSDI). I am incredibly grateful for it, but unfortunately it isn’t enough to cover my housing and utilities, let alone food and medicine. Unable to work at a traditional “job” due to pain and mobility issues, I am also home bound in a place with no public transportation- so getting to any sort of workplace is impossible for me at this time.

I’ve been trying to find little ways here and there via the internet to earn a few extra dollars each month, but so far, nothing has taken off. I’m trying Amazon affiliate marketing, selling tee shirts that I design, selling paper goods (planners, notebooks, journals, etc…) on Amazon that I design, writing/blogging, etc… I am also currently working on earning my TEFL (Teaching English as a Foreign Language) certification so that I might do some ESL (English as a Second Language) tutoring online. I have a degree in English Literature, so I am also offering up regular English tutoring for students both locally and online as well. As I’ve said, nothing has taken off thus far, but I live in hope…

I will keep trying, because I do not want to have to go online every month and beg my friends (and internet strangers) for money via GoFundMe/PayPal, etc… so I can keep my electricity turned on and be able to eat. I do receive “food stamps”, but they recently cut the amount in half… just out of the blue… which now leaves me with $25 a week to eat on. Since I cannot eat processed foods and must be gluten/grain/soy/etc… free, my groceries each week are about triple that, sometimes more if I run out of meats/fish. Food stamps also do not cover household products (trash bags, tissue, toilet paper, soap, etc…) nor do they cover any over the counter medication, vitamins, or supplements. Even if the food stamps did cover it, the amount is not substantial enough to stretch for those things.

My situation is far from ideal, but this is often the reality for those of us who are chronically ill, especially in the United States.

Why Did I Create SOAM?

It can be terribly overwhelming to embark on this journey alone. Accordingly, I want to ensure that no one else has to suffer such isolation. I created Spoonie on a Mission (SOAM) to provide a “hub” for all of Spooniekind. Spoonie on a Mission (SOAM) aspires to be a place where Spoonies can go for support and to support others.

Living with chronic illness and/or chronic pain often means…

  • Extensive medical visits and procedures.
  • Long lists of medications (plus the added stress of potential side-effects).
  • Varying degrees of disability.
  • Ongoing mental health struggles.
  • Unemployment and underemployment.
  • Financial hardships and even complete ruin.
  • Lack of friends/family support.
  • Loss of social life/hobbies.
  • First-hand experiences with discrimination.

And more…

The heavy stress of the Spoonie life can exacerbate many chronic conditions, causing a vicious cycle of flares and complications. Coming together as a community may potentially offer some relief for that stress, or at least, that’s the goal!

What Kind of Content Do We Have Here?

In addition to the SOAM FACEBOOK GROUP, and BLOG entries I will share here, I also provide a SHOP page. This page provides links to products our Spoonie family may find useful in their chronic illness journey. I hope to also maintain a RESOURCES page with links to potentially helpful information for people facing the many issues that go hand in hand with being a Spoonie.

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.

Please note that I will only be sharing products I am using or am personally familiar with. Consequently, I won’t be spamming the website with loads of garbage for the sake of making money.

As a disabled person with chronic illness, I am living on a small disability stipend each month from the government. Unfortunately, this money does not stretch far enough to cover basic needs, so I am trying to monetize the website. I do, however, solemnly promise not to compromise my ethics in doing so. Spoonie on a Mission will always be a transparent place – a place you can trust. SOAM is not a “link factory”.