“What exactly is Hazel’s illness?”

This is actually a difficult question. The short answer is, “Complex multiple neuro-immune diseases.” But I know people want to know more about Hazel and that’s hard to write. For one thing, I would really like to respect Hazel’s privacy. But, of course, strangers can’t just take my word for it, that Hazel is severely ill and needs help. You need more information before you will donate.

I’m thinking, it would be easy to answer if Hazel was suffering from a single illness, and one that’s better understood. Unfortunately, what Hazel is bearing up under, as well as anyone could, is the onslaught of multiple, complex, and poorly-understood diseases. There’s not a one-word answer, to spark instant recognition. Very few people are going to be able to say, “Oh yeah, I know someone who has that.” Thank goodness.

I hope you don’t know someone who has all of this. If you do, I hope you’re doing everything you humanly can, and more, to help that poor sufferer. It’s my lot to help Hazel, and, because I’m sick too, it’s my necessity to ask for help, helping Hazel. And before people help they want to know why they’re helping, of course. So here’s what I answered:

 *takes a deep breath* Okay, here goes.

Hazel is severely ill with multiple complex neurological diseases. She has been diagnosed with myalgic encephalomyelitis, fibromyalgia, chronic severe migraines, and illness from exposure to mold toxins. 

Additionally, she is in constant intense jaw pain which was diagnosed as Trigeminal Neuralgia — a condition so painful it’s known as “suicide disease,” — which is probably the result of damage inflicted during botched wisdom tooth extraction, but she has not been well enough to go out to see a dental specialist who can order the kind of enhanced MRI that would give us the nature and location of the damage. 

Hazel also suffers from PTSD, and she’s autistic. Patients with ME are highly sensitive to all sorts of stimuli, to begin with. Light, sound, touch–all nerves are hyper-aware. This sensitivity is exacerbated by both PTSD and autism. 

Thank you for your interest in helping her. As I’m also disabled by M.E., Fibro, and mold exposure… trying to survive with limited resources of energy and money while supporting an offspring who is suffering so extremely. I would far rather be working almost any job, than giving personal medical information to strangers, but that’s the position we’re placed in by the failure of the system to care for patients like Hazel.

So there is the long version. Hazel is very sick. The system does not provide care. I have to raise money to pay the only medical professional I can get to come and see her. (There’s more about all that in other posts. Suffice to say, we tried everything.)

And now, we have this bill to pay:

This is the bill for one house call by a doctor, including travel time and one hour of consultation. Hazel can have Telehealth appointments, saving some money, but once a year her physician must see her in person. We hope next year Hazel might be well enough to get out to the clinics not only of her primary care physician, but of specialists like neurologist, endodontist, endocrinologist, and more, who don’t make house calls.

Following up on that appointment, Hazel needs more lab work, which means paying close to $200 for a visit from a phlebotomist for the blood draw. The blood work itself may be partially covered by insurance. Then, the doctor can consult again based on the new lab work–several hundred more dollars for a Telehealth appointment–and then, the treatments will be partially covered by insurance, partially not.

Meanwhile, we are still replacing items lost to our move away from mold. Most of our belongings were contaminated by toxic mold, and we don’t dare replace them with thrift store stuff that might well be likewise contaminated. I’ve gone into credit card debt to get us essentials from beds to clothing–nothing fancy and expensive but just basics.

So the need is real, and urgent. Please, if you can help, visit Pocketful of Hope: Pathways of Healing and donate what you’re able. That’s the fundraising site created by our in-home helper*, Heather, who is as intimately acquainted with Hazel’s situation as is anyone other than me and Hazel’s doctor–and because she knows Hazel’s situation, Heather felt compelled to help all she could. I hope that you will, too.

*If any additional evidence is necessary, to show that our need is real, please note that we both receive in-home help via IHSS, in addition to SSI Disability (about $900 per month which is not easy to live on, even without outstanding medical costs). While there are horror stories of people who cheat to get government aid, real cheats are by far the minority of recipients. And I can assure you that cheating would be way more trouble than it’s worth. If I had the energy to perpetrate fraud, I would have the energy to do honest and far more lucrative work instead. And if I wind up becoming the next J.K. Rowling, rolling in money, please contact me and I will be glad to refund your donation. Thanks!

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