Help Hannah Cope with & Heal from Chronic Illness
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Hi, my name is Hannah Joy, and I'm fundraising for medical and living expenses for 2024. I will share some overlapping information from last year's page as well as some new updates! Let's start with my current symptoms, the ones that have improved, and the ones that are still debilitating. (A little further down I'll share a fuller summary of my health journey over the past 30+ years.)
SYMPTOMS IMPROVEMENT (over the past 2 years)
- Significant improvements in sleep
- Moderate improvements in: gastrointestinal function, panic, dissociation, inflammation, flashbacks, sense of safety, ability to access creativity, compulsiveness, managing Post-Exertional Malaise, balance and posture, headaches, morning stiffness, self-awareness, accurate assessment of abilities/needs/desires.
- Some improvements in: focus and brain fog, physical flexibility/stability, physical pain, groundedness, food sensitivities, mindfulness, temperature regulation, chronic fatigue, numbness, chest pain, breathing difficulty, blurred vision, hypervigilance, histamine sensitivity, swelling.
CURRENT SYMPTOMS
- Severe fatigue, weakness, post-exertional malaise, brain fog, difficulty concentrating, nightmares, startle response, sensory overload, mitochondrial damage/dysfunction.
- Moderately severe Complex Post Traumatic Stress Disorder and Generalized Anxiety, poor circulation (meaning that my legs turn purple if I stand still for more than a couple minutes).
- Moderate Depression, Compulsiveness, muscle pain, food sensitivities, Mast Cell Activation Syndrome, brain swelling, muscle pain
RECENT HELPFUL TREATMENTS
- IASIS microcurrent neurofeedback
- High Dose Vitamin C IV, Glutathione, NAD
- Dialectical Behavioral Therapy (started January 2024)
- A new multivitamin specifically targeting mitochondrial function.
RECENT DIAGNOSIS CHANGES
- New Diagnosis: Myalgic Encephalomyelitis (which for me is basically a subset of my CIRS diagnosis, referring to the brain inflammation, mitochondrial damage, and post exertional malaise I experience)
- After full Psych Eval, 1) one of my mental health disorders is now in remission! and 2) two additional mental health disorders were identified and diagnosed (developed likely due to how long my PTSD and CIRS went undiagnosed and untreated )
UPCOMING TREATMENTS and GOALS
- DBT individual therapy sessions at least three times a month
- Massage Therapy at least once a month (at my psychologist's office)
- Functional Movement (posture, flexibility, stability, muscle engagement, stretching) on my own or possibly through an online program specifically designed for those with autoimmune disorders.
- Continue exploring creative endeavors: painting, videos, & writing.
- Re-test apartment for mold.
- Continue to cultivate refreshing relationships in-person and online.
- Work towards doing intensive Trauma Therapy, since PTSD is a significant contributing factor to my current symptoms, and a hindrance in my CIRS treatments; the hope is that DBT therapy will give me the skills that I need to tackle the trauma at some point in the mid future.
UPDATES
- For me, 2023 has been the hardest, most isolating year of the pandemic since 2020; I regularly feel alone, heartbroken, helpless, angry, and abandoned.
- Art has been such a life-giving thing this past year! Making videos, and getting back into watercolor painting, and doing a bit of writing. Such joyful, fulfilling things!
- I feel keenly the suffering in my life and in the lives of people in this world. It often overwhelms me.
- I also keenly feel the precious goodness and immense joy of my relationship with my sweet husband Will! We've been married almost 3 years, and he still surprises me with his kindness, intelligence, and character. ❤️
- Last year, two different churches were very generous in their support of my medical treatments and of our rent needs.
- We got to spend some very sweet time with my mother-in-law in the summer of 2023!
- Over a dozen of our relatives from Tennessee joined us for a Mississippi Thanksgiving celebration, and it was such a treat!
- We got to spend Christmas 2023 with my parents and youngest sister, and it was gentle and joyful.
- Will’s job, which he started in March of 2023, has been going well! The work environment is stellar, and his coworkers are genuinely nice people. I so appreciate how hard Will works to provide for many of our needs and to bless so many people in our city and state!
FINANCIAL SITUATION
- We are living very frugally in a very small apartment, but still have insufficient income to meet our basic needs (which was affirmed by financial planner at our church) which leads to regular STRESS, which negatively impacts my health.
- We are actively exploring several options, we have a few people of influence advocating for us, but in the meantime, we are waiting and in need…
MY STORY
I was born with multiple gene mutations that predisposed me to mental and physical illness. Throughout my childhood and adolescence, I had significant and undiagnosed mental health disorders, as well as a handful of traumatic experiences. My mental and physical health began rapidly deteriorating towards the end of college, when I caught mono (and never really recovered, i.e. “Long EBV”), developed a much more severe level of PTSD (at the time, still undiagnosed), and was exposed to copious amounts of toxic black mold. The combination of these genetic, environmental, viral, and emotional stressors led to me developing severe inflammation, specifically a disorder known as Chronic Inflammatory Response Syndrome (CIRS). By the time I was 23, I was mostly bedridden. Now at age 34, it's been over a decade of severe chronic illness. Over the past 7 years, I finally got four mental health diagnoses (including severe complex PTSD), my CIRS diagnosis, and various other diagnoses (such as mast cell activation syndrome, small intestine bacterial overgrowth, irritable bowel syndrome, and multiple chemical sensitivities). I moved to Mississippi about 9 years ago, and without knowing it was living in somewhat moldy conditions. Almost 3 years ago I got married and moved into yet another moldy apartment. Finally, in July 2022, I moved into a mold-free apartment!
WHERE I'M AT NOW
Before I moved to this apartment, my treatments were about 95% focused on "treading water" (i.e. not getting worse, staying alive, trying to digest food and hold on to water) and 5% working towards healing. Since moving, this ratio has gradually transitioned to 80% treading water and 20% working towards healing! We have seen little bits of progress in so many areas of my mental and physical health! THIS IS A CRITICAL TIME, where I'm still very disabled by multiple chronic illnesses, but where I also have a unique opportunity to pursue greater levels of functioning—more so than I have for the previous decade!! I'm still in bed for most of the day. I still have to manage my energy extremely carefully, or else my symptoms quickly spiral downward to dangerous places. My PTSD is noticeably improved from 3 years ago, but still affects me on a daily basis. I've got a wonderful DBT therapist whom I see about three times a month. I've got a wonderful nurse practitioner who's treating my physical health issues who I see once every two or three months. I've got a wonderful psychiatrist I see every few months, as well as a microcurrent neurofeedback practitioner that I see monthly.
THE OVERALL GOAL
Here's the thing. Most people with Complex PTSD and CIRS deal with some degree of residual symptoms for most of their lives. BUT most people ALSO make significant progress in functioning and healing! This is where I need community care to come in. I need help to be able to afford to keep living in this clean apartment, to keep eating food that my body is able to tolerate, to keep taking medications that help keep me safer and more stable, to keep going to therapy to gain skills so that hopefully in the next year or so I can finally begin therapy for complex traumas in earnest, to stay on health insurance which makes my medications and treatments more accessible, to continue the microcurrent neurofeedback treatments that are calming my brain and body, and to work on repair of cells and systems that have been wrecked by inflammation and chronic / acute stress.
THE NEED
I have roughly estimated the amount of money I / we are short for meeting my basic needs and continuing to pursue greater health and healing for 2024. It feels like a lot. I honestly can't make any guarantees as to how I'll be doing 6 months from now or a year from now. But I DO know that this is an important time, that I am working hard, and that I need community care!
HOW YOU CAN SUPPORT AND ENCOURAGE ME
1. Donate towards my basic needs and towards my treatments via GoFundMe, Venm0, personal check, or PayPaI. (I will add non-GFM donations towards my GoFundMe total.) I promise that even $5 or $10 can be a big help and encouragement!!
2. Share this fundraiser on social media and/or with your friends/communities who may be able to help—particularly those who have tender hearts towards those who are suffering.
3. Pray for me, for Will, for my community, for those treating me, and for society to be a kinder place for disabled people!
4. Learn about chronic illness and disability so that you can be a gentle friend and an informed advocate.
5. Send us a gift card for Kroger, Amazon, Sam's Club, Newk's (a local restaurant chain), HungryRoot (meal kit delivery service that has some food options that fit my dietary restrictions), or Walmart.
6. Become a free or paid subscriber of my Substack, Homebound Nomad. Or contact me to see if I have any original art or art prints for sale.
7. If you want to give money directly to my nurse practitioner's clinic, to our apartment complex (for rent), to my psychologist's office (which is where I also get my DBT therapy and where I will get my massage therapy) to help cover my bills with them, ask me for their contact info.
8. I keep an Amazon wish list of food items, supplements, toiletries, and air cleaning devices that we need; I update this list regularly. Here’s the current link: https://www.amazon.com/hz/wishlist/ls/22VAWKOSGPB0S?ref_=wl_share
9. Keep in touch in ways that are accessible accessible to me (I can't go jogging with you or fly out of state to see you, but I can text and do social media). Send me a card. Tell me that you're praying for me. When I share information in person or on social media, interact with it, and let me know that you care and that you appreciate hearing about how I'm doing.
10. Trust my character. Humbly believe that I'm telling the truth about my experiences/needs/diagnoses, that I'm working really hard, and that I'm doing the best that I can. ❤️
(Here’s a wonderful article I read on the topic of supporting people with chronic illness! https://www.oakstreethealth.com/how-to-support-someone-with-chronic-illness-8-tips-to-help-1511058 )
THANK YOU
If you made it all the way through this write-up, thank you for reading! So many of you have cared for me so faithfully over the years. For those who have reached out or prayed or given or grieved—you are so appreciated!!
Love,
Hannah ❤️
Co-organizers (3)
Hannah Joy
Organizer
Canton, MS
Joelle A Lewis
Co-organizer
Joelle Lewis
Co-organizer