Help Máire Fight Chronic Illness and Debt

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Help Máire Fight Chronic Illness and Debt

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Hello! My name is Máire (pronounced MOY-ra or MOR-a). I have created this GoFundMe to help with my ever-expanding mountain of medical and household debt.

I have a LOT of health issues. Most of my illnesses are genetic, but I was not diagnosed with some of the most important conditions until I was in my fifties.

1) Ehlers-Danlos Syndrome, a connective tissue disease that causes the body’s collagen to be flawed and affects my whole body, causing a whole host of other conditions, including (but not limited to):
  • Joint instability
  • Degenerative disc disease, spondylarthritis (spinal arthritis), and spinal inflammation (spondylitis)
  • Gastrointestinal dysmotility
  • Cranio-cervical instability
  • Osteoarthritis, arthralgia (joint pain), tendinitis, tendinosis (tendon degeneration), and chondromalacia (cartilage degeneration)
  • Chronic deficiencies in Vitamins D and K, a form of alopecia (hair loss) over my whole body, and low bone density
  • Neuropathy and neuralgia (nerve pain) throughout my body, especially in my spinal cord

2) Chronic deficiencies in B12 and folate only partly relieved by monthly injections and supplements

3) Hyperinsulinemia, a form of reactive hypoglycemia controlled only by a heavily modified diet

4) Dysautonomia, or impaired autonomic nervous system regulation, that causes dizziness, vertigo, intolerance to extreme heat, impaired sweat/saliva/tear production, and tremors

5) Migraine disease

6) Mast Cell Activation Syndrome/Disorder (MCAS/MCAD), which causes unpredictable and sometimes very dangerous allergic reactions, headaches, gut disruptions, food intolerances, difficulty with concentration and memory, and chronic fatigue, causing even more dietary restrictions

7) Impaired processing and elimination of chemical substances and medications, so that most household cleaners, laundry detergents and fabric softeners, all herbicides, pesticides, fertilizers, perfumes, fragrances, and air fresheners, nearly all antibiotics and all pain medications and non-steroidal anti-inflammatory drugs (aspirin, ibuprofen, etc.) are toxic. Most surgical and local anesthetics are ineffective at safe doses, and I cannot take any medicines for my migraine, major depressive disorder, ADHD, or idiopathic hypersomnia

8) Several autoimmune conditions, which cause my immune system to attack my body, require still more dietary restrictions, and include celiac disease, endometriosis, uveitis/iritis, and psoriasis

9) Several immune-mediated conditions, which cause my immune system to overreact to harmless things, including a truly absurd number of allergies, rosacea, and asthma

Fantastic and ridiculous and legitimately my daily life. But it gets worse.

In August 2011 my life was further upended by a drastic fall. I fell squarely on my low back. It shocked my spinal cord, spine, and brain, and caused a bleed in my upper brain stem. These injuries left permanent damage to several cranial nerves, worsened my idiopathic hypersomnia, herniated several cervical and lumbar discs, and caused what had been episodic migraine to become chronic migraine. I am now never entirely without migraine pain.

My life was even more disrupted when I contracted COVID-19 in May 2023 and was sick for twenty-one days. Thankfully I was vaccinated, which prevented me from having to be hospitalized. But the virus attacked my nerves and my gut, causing long-term and possibly permanent problems. My Long COVID causes incredible difficulty concentrating, much worsened chronic fatigue and dysautonomia, and contributes to my constant nerve pain. Fun city.

Then, in June 2024, yet another disaster struck when my L4-L5 disc herniated up into the marrow of my L4 vertebra, an injury called a Schmorl’s node herniation. In most folks a Schmorl’s node requires serious trauma, but my low bone density, degenerating spine, and EDS mean I don’t have to fall or be in an accident. I just have to weed my garden! Lucky me. Now I have chronic, searing pain, like electric magma, in my spine and spinal cord.

My complex medical history means I have an army of medical specialists—a neurologist, a neurosurgeon, an allergist, a dermatologist, a gastroenterologist, a rheumatologist, a pain management specialist, a pulmonologist, a sleep physician, physical and occupational therapists, a dentist, an eye doctor, and an orthopedist are all on my team, scattered across two states—and all of them must be knowledgeable about Ehlers-Danlos Syndrome (EDS). EDS affects so many aspects of my health that seeing a specialist who does not have EDS knowledge is not going to help me. But most medical professionals are not taught about EDS—or they’re told only that it’s so rare they’ll never see a case, so finding specialists takes hours of phone calls and internet searches. All of my specialists except one are at least 90 minutes away—and since I cannot drive outside of my town due to my nerve damage and hypersomnia, this means I am always in need of a ride.

Between constant appointments with specialists and extreme dietary limitations, ordinary things in my life just cost a lot more than for most folks. The ongoing need for monitoring and diagnostic tests, as well as frequent treatments for joint dislocations, subluxations and broken feet, all mean that I incur new medical debt before I can pay off the old costs. There are also the operations: I had gallbladder surgery in April 2024, in July 2025 I had the first of what will likely be several spinal surgeries, and may have to have arthroscopy on my ankle in 2026.

Since I can’t take pain medications, I am in constant, often searing pain with no real relief. But when my gallbladder was removed, they used ketamine as surgical anesthesia. It caused an extended reduction in my pain that lasted almost seven weeks, and I did not experience any significant side effects. Suddenly I thought there was hope. Then my pain management doctor told me that my insurance will not cover ketamine for any non-surgical use. A single treatment (three infusions) is $2400; I would likely need at least 10 treatments, costing $24,000 out of pocket. Ketamine infusions would reduce my pain enough that I’d be able to get physical therapy that could help me need pain relief less over time, with the hope that I might get to a place where I would not need it at all anymore. But $24,000 is just not manageable. Neither is the $700 for PRP, or Platelet-Rich Plasma, a treatment in which my own blood is extracted, separated via centrifuge, and the plasma reinjected into places like my badly damaged ankle to reduce inflammation. PRP is not covered by insurance either.

On top of these healthcare costs, there is the fact that my century-old house needs major repairs. One problem after another since I bought the house has eradicated my savings: the air conditioning; the plumbing; a foundation that snapped and caused half of my house to sink, and more. The foundation work alone required me to take out a second mortgage, the total of which was $35,000. My primary mortgage still has a $65,000 principle remaining. To make matters worse, the foundation crew did not backfill under the foundation when they piered and leveled off my house, leaving a big gap below the house that caused a massive sinkhole under my driveway. I had to take out yet another loan using my car as collateral. I had to use my credit cards to pay the down payment on the foundation work, and the constant medical and household debt has meant I’ve also had to use my cards for basic needs like groceries. The extensive repairs my house needs include:

  • Replacement of all windows: ~$15,000
  • Full exterior insulation: ~$10,000
  • Weather-proofing the attic, including new insulation and improving the existing ventilation: ~$4,000
  • Full foundation sealing of all cracks: ~$10,000
  • Removal, replacement, and painting of all interior ceilings and walls (they are badly cracked and crumbling because of the foundation, and in some places down to the lathe): ~$25,000
  • Repair and repainting of the porch ceiling, which is peeling and cracked: ~$3,000
  • Repair and renovation of old ductwork, some of which is still insulated with asbestos tape: ~$4,000
  • Replacement of my shed and its concrete pad: ~$18,000
  • Replacement of my dry-rotting fence, which encircles a lot of 12,000 square feet (my house is only 900 square feet), with lower-maintenance composite: ~$12,000
  • Making my kitchen and cabinets more accessible because it is not safe for me to use a stepstool due to high fall risk: ~$5,000
  • Fixing and sealing my bathroom tile floor, which is badly cracked and not sealed: ~$3,000
  • A new stove/oven (mine is about 20 years old and will go anytime): ~$700
  • Removal of the basement carpet and replacement with something that is much easier for me to clean and does not trigger my allergies, like water-resistant linoleum: ~$6,000
  • Replacement of my gas water heater (mine is 15 years old and may go soon): ~$1,300.

None of this work can be done while my medical costs remain so high—nor while I am trying to pay two mortgages simultaneously. Additionally, both my credit cards are fully maxed out, for a total credit debt of $38,500.

The reality is that I am barely making ends meet and just cannot take on the additional costs of my own health care or of the ongoing house repairs—even though they are not optional—because of this mountain of medical and household debt. The first donations received all helped me pay for my spinal surgery, and I am beyond grateful. THANK YOU!

Donations since then have gone toward a loan taken out to cover an emergency crack repair in my foundation and new medical expenses. If I EVER get to a place where medical and household expenses are stable for a time, donations will help me pay down my secondary mortgage and my credit card debt. Any funds beyond these would go toward additional medical expenses, such as ketamine infusions, PRP treatments, additional physical and occupational therapy, allergy testing, and so forth, and toward other necessary household repairs.

I figure that asking for help is better than not. Any amount donated helps, and even if you can’t donate, sharing so others can donate helps too! Thank you so much!
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Maire Johnson
Organizer
Emporia, KS
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