chronic illness is expensive

UPDATE:  Thanks to the kind generosity of friends and strangers, we were able to raise $2351!  These funds have allowed me to continue treatment.

In February I was able to go forward with a procedure to have the toxic mercury-containing amalgam fillings removed from my mouth. safely managing the after-care brings its own challenges, but there has been marked progress. 

Your contributions paid for the actual procedure, chelation medications, supplements and consultation.  

The biological dentist who performed the work has helped many chemically sensitive/chronically ill patients to recover.  he carefully removes old amalgam fillings because they contain mercury, a known neurotoxin that impedes detoxification and other functioning.  Also, the interaction of those "silver" fillings, metal dental crowns and implants is creates a galvanic effect that escalates symptoms. Taking out the source of mercury toxicity is a way to give my body a chance to clear out the things that are making me ill. It also reduced the electromagnetic hypersensitivity by like 90%!

Read about safe removal of mercury here:

https://iaomt.org/resources/safe-removal-amalgam-fillings/

An exciting story about full recovery from chemical sensitivity:

http://www.ei-resource.org/forum/multiple-chemical-sensitivity-mcs/623-my-complete-recovery-from-mcs/

About the relationship between amalgam fillings and chronic health problems:

https://wholebodymed.com/dentistry/mercury-silver-fillings-science


. . . THE BACK STORY . . . 

In May of 2016, my life was working. I had a successful psychotherapy practice, a healthy savings account, a close friend tribe, and had just met my future wife.


On the eve of Rosh Hashanah in October of 2016, everything changed.  I got sick. Really sick.

I suffer from an environmental illness that was ignited by a chemical injury. It was a perfect storm of the noxious "signature scent" of a shitty hotel, toxic mold exposure, high levels of heavy metals such as mercury and lead,  and a gene mutation that prevents me from detoxifying adequately. Treating most of  what's wrong involves a lot of trial and error because this multi-organ, multi-system situation is not well understood. Addressing it is time consuming and costly. Financially and emotionally.

But - I was lucky. Rather than gradually become more and more symptomatic, it blew up. Suddenly I was sickened on the spot by fumes from innocent-seeming products and places. I became that person in a respirator mask. Cologne, cigarette smoke, gasoline, clothing washed in typical laundry products, dryer exhaust, air fresheners, personal grooming products - even going into CVS or Ikea - made me extremely ill. I'd been becoming more and more sensitive but this lined up with everybody's story about me: Jill is so sensitive.  Yup!

I caught it early because i knew someone else who has this miserable problem.  I was able to get medical care fast because i knew what to call it, where to look for help, and I had the money to pay for it. This stopped my decline and I was eventually able to return to work while still managing treatments.  But, even though I was able to return to work, I can only work a limited number of hours because public transportation and city streets -- even my office building, depending upon what they are cleaning with, and who's in the elevator  -- are perilous for this chemically sensitive gal.  


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This is me on a flight from Denver to NY. The Denver airport is known to be very moldy, and airplanes are oxygenless tubes of toxic, ambient chemicals. 

Fun fact:
Almost none of my medical care is covered by health insurance (my policy costs $726 a month).


So, the toxic mold exposure. My amazing doctors figured out that our home was a significant contributor to onset. Biological testing confirmed that it was infested with invisible (hiding out in interstitial places) toxic mold, volatile organic gases and mycotoxins. Nanoparticles so small that it takes hours for a single one to fall from the ceiling to the ground.  

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We remediated the entire house over a 4-month period and began to stitch it back up, but our claim was declined by our home insurance company, Liberty Mutual (“Liberty Mutual Stands With You”) . Our unjust homeowners policy stipulates that a one-off catastrophic event must precipitate a mold infestation. In our case, mold and mycotoxins spread quietly throughout the “bones” of the house. We only learned that it was there because I got sick. Sadly, this is not uncommon for mold warriors whose homes have silent mold problems.

So - after four months in an overpriced, shitty sublet that made me sicker (smoke and laundry fumes leaked through vents; electronic air fresheners were placed in common spaces), we were able to move back home, and slowly begin to replace all of our possessions.

Why? Because mold mycotoxins like the ones that were in our house are insidious and potent. They have been called “soft radiation” because they can infect plastic, glass, metal, wood, and other materials that seem impenetrable. The obvious, porous items such as clothing, shoes, papers, books, furniture upholstery and linen are easily contaminated. After spending all of our savings on remediating, we did not want to risk cross-contaminating our now-pristine home. 

It might have been better had our house burned to the ground because maybe then Liberty Mutual  would have reimbursed us  for the 100k+ loss we sustained. That number includes the temporary residence (10k+), remediation (almost 65k), reconstruction (only a portion has been undertaken, so far about 20k. Some of the rooms still don’t have floors, ceilings, walls and insulation. Just sayin’.), and the cost of replacing everything.  

32399124_1535161761988610_r.jpegThis is our entry room.  The underside of the floor was molded through so it had to be torn up completely.  We poured concrete  ($2500) foundation to prevent future moisture issues and bought the materials to build the floor (several hundred dollars' worth), but that is as far as it went. We can't install it ourselves.

32399124_1535161798694874_r.jpegThis is our kitchen - sideways (technical issue - sorry).  We like the rustic barn look, but there is no ceiling or insulation, and the walls are down to the studs. The cabinetry and appliances had to be trashed.  We replaced the refrigerator and stove and got a temporary sink from IKEA, and some cabinets from yard sales. 


The good news: I was getting better.


The bad: I exhausted my savings.  Worse: I stepped down treatments from weekly to monthly, then bi monthly and, over the last 4 months, I’ve stopped treatments altogether. I’ve been skimping on or cutting out medications and supplements to make them last longer. I’ve been hoarding my oxygen supply, using it on an “as needed” basis. That is, when I feel like I’m suffocating, rather than as it is prescribed, 2 hours daily, for hypoxemia.  

32399124_1535162391425648_r.jpegThis is our first Thanksgiving together. I am "doing oxygen" at my doctor's clinic in Martha's Vineyard. She is an expert in environmental illness and emergency room medicine. She literally pulled me back from the edge (at one point my heart rate was in the very low 40s). Here you see non-PVC tubing ($30) and a ceramic  mask ($100).  Typical medical tubing is toxic for me.  I'm not sure it's good for anybody!

Now my progress is slipping.

My acute sensitivity to chemicals in the environment--the most obvious symptom of toxic mold, chemical and metal toxicity  -- had diminished some, but is climbing over the top again.

The most frightening thing about this, besides everything, is that my clusterfuck of symptoms could easily escalate into full blown ME/CFS and/or cancer, since mitochondrial dysfunction (which I have) is thought to play a role in the proliferation of some types of cancer cells. My affliction is going to get uglier if I don’t resume my treatment plan aggressively.

So. After paying the mortgage and basics, few funds are available to do the things that helped me to get better in the past. I can’t afford to have my health get worse, further reducing my ability to work and bring in money to care for myself and my family.  Both of my doctors have warned me to take my recovery more seriously because it can get so much worse.

Nobody likes that story. 

Janine also became ill due to an adrenal/thyroid crash early in 2018--and very likely as a result of being exposed to toxic molda— and was unable to work for many months. Her savings were also decimated by the mold apocalypse and her own health issues.

Please know how horrifying and shameful it is to ask for your help. We are proud people.

The thing that convinced me to ask for your help was seeing a Gofundme campaign for someone who was rescuing wounded squirrels - not that there’s anything wrong with that. I mean, those little paw wheels! However, we’ve lost just about everything including our health and, without the opportunity to recover, we are likely to lose even more.

Many people have offered to help. Friends, family, colleagues and even strangers on social media -- so we are taking you up on those offers. Anything you can give will help us. Even five bucks. That’s two heads of celery for juicing, which is great natural medicine for adrenal function. 

Thank you and G/d bless.

Here is Where Your Donation Will Go - after the 2.9% charge per donation and .20 per donation gofundme fees. 
*costs may be adjusted for accuracy

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$400 will pay for one monthly visit with my doctor who specializes in environmental illnesses such as mine. (out of network)

$1300 will get me updated bloodwork and diagnostic testing not covered by insurance. 

32399124_1536461027756204_r.jpegThis is a short lists of mold antibodies found in my body. They suggest the presence of those things in my environment. It was all confirmed by rigorous and costly biological testing of our home.

$230 will pay for a one-month supply of my brand prescription medication from Canada.  The copay in the US is $360 (my insurance only pays for generic but I have a horrible reaction to it).  

$62 will pay for a 1-month supply of compounded prescription medications

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$250 will pay for antigen shots for one month

$100 will pay for a session of psychotherapy (my generous, long-time psychotherapist is giving me a generous sliding scale fee). It would be swell to have emotional support from someone other than Janine and a few of my sterling and devoted friends!

32399124_1536460864375388_r.jpegCelery is amazing medicine for the adrenals.

$40 will pay for a week’s worth of organic vegetables and fruit for juicing. This has made a dramatic shift in my recovery. Conventional, nonorganic produce tends to have higher levels of toxic pesticides, so we try to buy organic whenever possible. Also, because conventional farming practices do not honor and care for the soil, nutritional content of vegetables and fruits is only a percentage of what it used to (and should) be. The concentration afforded by organic juicing helps so much, but is so expensive. I recommend it for everyone. 

Another way to help would be to donate airline/hotel miles. A respected functional neurologist has offered to take my case pro bono. There is a treatment offered in Dallas that people with my condition claim has moved them ahead in dramatic ways. I just have to get to those places and stay there.  If you are a practitioner of massage therapy, reflexology or any other alternative healing modality and want to gift me your services, that would be a beautiful thing too.

BONUS: to be filed under unjust and fu*&$d up: my participation as a character in the Netflix series "Afflicted"  turned out to be a debacle.

It was pitched to the cast as a serious scientific-medical documentary about chronic illness. It wound up being edited into a warped, dishonest reality TV show that focuses on whether our illnesses are "real" and to what extent the cast is malevolent and/or insane.

This is causing me great distress as a person and as a professional. I knew that there would be jackasses who make mean-spirited comments on social media. Sadly, some of  our friends seem to be drinking the kool aid. But their opinions are responses to a false, badly distorted version of me -- and us -- manufactured in the edit . I'm not sure how the decision maker(s) can live with themselves knowing that  they are adding to the suffering of a group of people who held back nothing for the camera to advance research and understanding by putting a human face on these complex medical problems. 

Here is a rebuttal article, written collaboratively by the cast, and generously guided by Jen Brea, creator of the award-winning (Sundance, SxSW among others) work, "Unrest," a true documentary about ME/CFS,  a devastating illness that is only now gaining mainstream attention. 

UPDATE: in late october we got married! in a park across from our home - surrounded by our wonderful friends and family.  many of  the new friends we made as a result of the "afflicted" debacle have wished us well . thank you!

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Donations (0)

  • Anonymous 
    • $18 
    • 2 mos
  • Anonymous 
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    • 3 mos
  • Anonymous 
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    • 11 mos
  • Kayla Murphy 
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    • 12 mos
  • Ginger Lazarus 
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    • 12 mos

Organizer 

Jill Thunder Sun 
Organizer
Bloomfield, NJ
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