14 A Wrench in the Plans

8 MIN READ.

Trigger warning: Death, illness, discouragement, hopelessness.

This was an email I just sent to a few angel friends awaiting my financial plan. Edited/abridged for brevity.

Title of email: “Bad news, original plan untenable, my time now collapsing, what to do?”

Hey guys,

An important update.

This email is not my “plan” document, I’m sorry. Please bear with me.

I was working on it, but my jaw infection progressed so quickly that it’s pulled the rug from under those plans.

This is frustrating, horrifying, and complicated.

Full disclosure: it’s possible I’m beyond help now. The past several weeks, every effort to get sleep has failed. It’s proved impossible to get any restorative—delta or deep—sleep. This may be true even if I had a truck at this stage. And this necessitates changing plans. I may be in the last stages of disease.

I’ll try to explain. I’m sorry S____, this isn’t the format we agreed on, but new circumstances are forcing me to adapt.

So I’ll answer your questions inline. Maybe we can come up with a feasible plan that way.

Here’s an outline of answers:

End goal
1. My end goal was to reach the point where my life and health was clear of imminent danger. At this point, my finances will also avoid danger. I’ll be working—back to positive cash flow.
My diseases. I have many, but two are deadlier and rarer than others.
1. One may be terminal: the jawbone osteomyelitis infection (“osteomyelitis”). Pathogens are eating up and disintegrating my jawbone. I’ve had 5 failed surgeries. Each time, surgeons/dentists removed necrotic bone (plus healthy teeth to get deep into the bone). But each failure resulted in the infection spreading. The bottom left of my jaw through the ramus to my ear is the wort—but all four quadrants are infected. All dentists now refuse surgery due to the difficult ramus involvement. One board certified surgeon in Maryland first agreed, then referred me away. I’m appealing for reconsideration since this disease may kill me. It’s affecting my left head, face, shoulder, heart. It’s spreading toxins into my body constantly. It’s unsustainable and painful, and not understood or covered by insurance. Even the doctors disagree on what they see on my MRI, CAT, Xray images. And osteomyelitis in the ramus is no man’s land. It’s never been documented. Which is why surgeons are afraid to perform surgery.
2. The other disease is jet fuel poured on the osteomyelitis: Chronic Inflammatory Response Syndrome (CIRS) and Mast Cell Activation Syndrome (MCAS), which I lump under “mold/toxin sickness.” This is like a hyper-sensitive peanut allergy, but for mold, mycotoxins, certain chemicals and toxins. And hellish as it is, it’s NOT deadly on its own. However, in combination, it is a trigger and accelerant to my osteomyelitis. In hindsight, I realize over the past 4.5 years, my five jaw surgeries failed due to constant exposure to toxins—especially during the critical 6-month bone healing windows. This is why I need a pickup truck and trailer as safe environments (MECU) to heal in. Resources:
  1. My osteomyelitis is presumed to be at Stage 4, Class B at this point.
  2. This deck is very good information on this disease.
  3. Here is a 2017 medical review from the Journal of Dentistry.
  4. More details Here as well.
  5. This is what my jawbone looks like.
  6. This is the website where the above image was taken from. [Warning: squeamish photos.]
3. Lack of deep delta sleep. This is not a disease per se, but this further disables my broken immune system and multiplies the force of my other diseases. Delta sleep is where healing happens, and I get zero of it. And it’s due to pain, not insomnia. I nod off constnatly throughout the day. But within minutes of dozing off, I’m shocked awake with pain. The sleep deprivation pain itself is also excruciating. I track my decline over here.
How to Heal
1. I will write a separate email detailing this with citations and references, but to summarize: I have two extremely rare diseases that no doctor or specialist who has ever seen or read about my combinaton of diseases. I’ve seen over 300 doctors (over 500 if you count emergency rooms), tried over 1,000 treatments, and have learned my illness now that I must routinely educate doctors on the latest medical literature and knowledge. So I have no choice but to be my own doctor and healer first.
2. Facebook support groups have helped me with my rare diseases the most. With mold+toxin illness, Erik Johnson (ex-army trained in biohazard warfare) used his training to heal himself many years ago. Since then, others use his method “extreme mold avoidance” with great success—in particular, Bryan Rosner who has extensively documented his healing journey with the method. This method, when done correctly, has 100% efficacy. But it requires enormous time, money and radical lifestyle change, including living in a specially-modified pickup truck and a special trailer (MECU), most in high-elevation dry environments that are as pristine as possible. General public resources:
3. Unfortunately, I can’t heal 100% with this protocol alone due to my osteomyelitis and gadolinium toxicity (topic for another day). However, I still need to practice extreme toxin avoidance to keep my head bobbing above water, and to slow down those other diseases.
4. Since five surgeries have failed (even after healing in a hotel for 2 months with a PICC line IV antibiotics) and since mold+toxin exposure triggers my Osteomyelitis to spread further, there is one clear approach:
  1. Find and secure a safe (mold+toxin free) environment to sleep and live in
  2. Only then, attempt my surgeries again to finally end this nightmare.
5. The above order is critical. With that backdrop, here is my original plan detailed below…
The Original Plan had four Phases.
1. Phase I: Get and live in a safe environment (pickup truck). Stabilize the osteomyelitis.
  1. Timeline: 3 months starting from the moment I get my pick up truck
  2. Goal: To validate feasibility of this plan. Can I live in a pickup truck? Can I find a clear and safe location?
    1. Validate pick up truck as safe place enough to get delta sleep in
    2. Validae pick up truck can lower and manage my mold+toxin inflammation
    3. Validate that doing both above will also STOP and STABILIZE osteomyelitis progression, or, at least, slow it way down.
    4. These then buy me time for my next phases.
  3. Note: Special modification for my truck:
    1. strip it of all carpeting with bare metal or vinyl floors,
    2. Replace cloth seats with leather/vinyl upholstery,
    3. truck bed must be bare metal
    4. treat the entire cabin with shock ozone treatments and chlorine dioxide gas treatments and outgas new-car odors
    5. install an all-aluminum camper-shell topper over the truck’s bed (truck will look like an SUV). This special all metal bed will be my safe, washable sleeping environment (MECU).
  4. If the 4 goals above are achieved, that feasibility is proven. And as soon as it is proven (or earlier), start working remotely and do whatever I can to bring in income. If any of the goal validations fail, the plan must be reconsidered.
2. Phase II. Prep for surgery. Get a safe environment to heal in post-surgeries. (Casita Travel Trailer)
  1. Timeline: 3-8 months (it takes months to find a good used Casita Trailer. New ones have 2-year waiting lists. Then a few months to learn and settle into in.
  2. Once my osteomyelitis is stabilized, prep for surgery.
    1. Set up the Casita for surgery recovery (PICC lines, showering, laundry, etc.)
    2. Coordinate multidisicplinary team of doctors for the surgery, biopsies, labs, PICC lines, ID pathogens, etc.
    3. Become cash flow positive, without outside support.
    4. Save for my surgeries (cash pay only)
3. Phase III. Surgery and recovery.
  1. Timeline: 6 months (for bone to fully heal).
  2. If this phase ends successfully, the entire plan will have succeedd. I will need more surgeries, but the riskiest one will be out of the way. It will also take several more years to FULLY heal from mold+toxin illness in a truck+trailer, but my health will finally find firm footing to achieve that as well. Success means all the following:
    1. Able to sustain 60+ hour work weeks
    2. gain financial stability, increasing my income and repaying my loans
    3. Able to tolerate vigorous exercise
    4. Able to occasionally consume sugars, caffeine, alcohol, dairy, gluten, or raw or rare animal products (sushi, kimchi) without severe health impact.
    5. Able to use coffee for productivity
    6. Resolve most of lower left jaw infection symptoms.
    7. See steady decline of Mold+toxin illness symptoms
    8. Start averaging 5+ hours of sleep
4. Phase IV: Heal enough to re-enter society normally
  1. Timeline: 2-5 years
  2. more surgeries in the table if other sites worsen.
  3. Achieve all of the following:
    1. Repay ALL personal, medical and credit card debts (within the first year)
    2. Build new career and income
    3. Settle into a house, live with family, work in an office, etc.)
The BAD NEWS: A terrifying development
1. My osteomyelitis may have reached a point where extreme Mold/toxin avoidance even in a truck can’t stabilize the disease. In the past weeks, I think I found safe areas to sleep in (a public bench, a shopping plaza alcove), however…
2. …my intense osteomyelitis symptoms are no longer relieved by better air. Delta sleep still elusive. But more alarming is that my osteomyelitis symptoms now don’t subside when I do sleep in safer environments. I may have been at Stage 3 or 4, Class A then, but now maybe Stage 4, Class B. I still feel like dying throughout the nights. I still fear I’m terminal.
3. The origiinal Phase I plan cost was $40K in “angel” loans (you guys). With $40K additional fundraising and loans planned from other sources. But now the greater urgency means I may need to accelerate everything which requires $80K total in loans and fundraising from all sources. Details to come.

So this is my current status. And I’m unsure what to do.

I believed my above original plan had a 50-80% chance of success. Now, that belief has dropped to maybe 5-20%.

I think the only option I have left is to get a pick up truck ASAP and arrange surgery—without the multi-disciplinary surgery team or the trailer. Challenges are greater. Costs higher. Income need more urgent.

The only other option is to seek my nuclear pain management option: hospice care. I may find true pain relief this way—and true peace—but it’s a one-way street. And others want me to ban this option from the table.

What to do?

I’m open to thoughts, suggestions, ideas.

Thank you for patiently reading all this.

14 A Wrench in the Plans

ReplyCancel reply