We’ve been so sick. I’ve been wanting to update but couldn’t write. I’m just going to edit a social media post and throw it in here so you’ll know what’s up, with apologies for no illustrations. And with hopes that some day I can again write better. Hell, I hope some day I’ll be writing about other things, because Hazel and I will be well.

First thing you need to know is that after moving to escape from mold, we’ve found mold growing in our new place. Oh no! The big difference is that this time we have a landlord who wants to protect his property and his tenants, not be a slumlord, so he’s having us hire a handyman and roofers to get right onto it. But meanwhile we suffer from the presence of spores which is beyond aggravating when we tried so hard not to bring along with us when we moved.

I just have to keep plodding on. Every time I get up to make a meal I try to suppress cries of pain so as not to make Hazel feel guilty for being hungry. Every time she complains I try to solve her problem, whether it be neighborhood noises or the need for new headphones or having to push back the next blood draw again because she’s still too exhausted from the last one. I do what I can and I don’t point out there’s nobody helping me. But when I crawl back in bed for a rest, I wish there were someone I could call out to, to bring me a smoothie. Someone else to wash a dish. Someone else to take out the trash. Everything hurts.

We’ve had no caregiver in nearly 3 months. Our wonderful caregiver had to leave because of degenerative disk disease and spinal stenosis: terribly painful and potentially permanently disabling condition which may require surgery to put spacers in her spine and she’d be grateful for info from any one who has suffered similar so please comment if you have a good link for her. 

She’s so wonderful. And I miss her so. She’s a very caring and thoughtful person with great problem solving skills. Having seen several years of our situation, before she left she made this site for Hazel: https://pocketfulofhope.wixsite.com/pathwaysofhealing So if you are able to help with a donation, that’s where. Top left, Donate Now link. Our other last two helpers left one for a job with more hours and benefits so she could stop having to live at her boyfriend’s mom’s house, and one because she had an uncle and a mom who both were disabled and needed her help. Problems are everywhere, but progress is possible. 

I have found a handyman to help us deal with the mold in our new home and assorted repairs but he had to cancel this week because his dad is being sent home to die so he has to get both dad and hospice settled, but he’ll work next week. Moral of story, again, everyone’s got problems but progress is possible. 

Meanwhile the world is burning and I wish I could be doing more to help but can’t even do all we need just to survive, we two, me and Hazel. Mantra, repeat, we all have problems, big problems, but progress is possible. Keep hoping. Keep trying, Keep being community, coping, caring, compassionate. Lie down and rest as needed, intending to stand up and make a difference when you can. Problems persist. Progress is possible.

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:

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!

This is truly an urgent appeal. Hazel has uncovered costs for vital medical care.

This afternoon, Hazel will have a home visit from her doctor. I have only half the money to pay for this visit. I need to raise the other half in the coming thirty days, before the bill is overdue, to avoid late charges. (Plus I need to continue to raise money for her treatments, and I need to continue acquiring essentials for our home, from normal things we lost to mold and need to replace like space heaters and a microwave, to things made necessary by illness like air filters and a good vegetable juicer, to things that we need because we are now in a house, not an apartment, like a rake and a wheelbarrow.) Most urgent today, however, is the money to pay the doctor.

Hazel can’t go out to doctors’ offices. Being bedridden she has to get house calls. Those are really difficult to get, in this country, at this time.

I could relate the whole horrific history another time. For now, let me just say, before you make suggestions, that we have tried them all. I spent a grueling search, over many months, working with clinics and local agencies, Medicaid and its local HMO administrator, professional caseworkers and invidiviual practitioners, organizations for the disabled, care givers, and fellow patients, in search of any way to cover Hazel’s home visits. 

There is no way. We’ll keep trying, but, at this time, the only way for Hazel to receive in-home care is for her to pay out of pocket. And, living on disability, the only way to pay out of pocket is by fundraising. Please, please help if you can. 

(Why is there no way? Okay, a brief explanation here. It’s a two-pronged pitchfork that impales us. On one prong, the medical system in this country is not set up to provide in-home care unless you are on dyalisis, for example, or are receiving home hospice care while you die. If you are one of the millions of patients like Hazel who are not actively dying in the immediate future, and are not afflicted with one of a short list of approved in-home illnesses, but can not get out and about, then you’re screwed. On the other prong, if, like Hazel, you suffer from an assortment of multiple illnesses, any one of which would be considered complex on its own, then the home nursing agencies that do allow for visits to a broader range of patients will exclude you because they are not capable of treating patients with such complex illnesses. So no. Really. I’ve tried. Oh, how I have tried. There is currently no way to get Hazel’s care covered by insurance.)

The upside is— well, there are many upsides, actually! One is that Hazel’s doctor, who makes house calls, although they’re very expensive, does her best to keep the costs manageable. House calls are only required annually, since by law her doctor can’t prescribe for her without having clapped eyes on her at least that frequently. 

The initial quote for Hazel’s care was $13,246 per month but we have spent, in over one year of care, “only” $7,717. To me, that’s still a lot of money. It’s $7,717 more than we could have paid on our own, out of disability income. But that includes doctor P’s home visits, T the Phlebotomist’s visits to our home, and the lab work from the blood draws T the P performed, and of course many many treatments. 

Our main treatment focus for the past two months has been to stabilize Hazel. Immediately after the move, in the beginning of September, she spent two weeks rarely keeping down any food. She was still taking in liquids, and she was able to eat and even digest from time to time, but if this had continued any longer she would have been in hospital or, her preference at the time, dead. She was in so much pain and so lacking hope. and her sleep cycle was destroyed.

There was a turning point, at last, and as I write, today, Hazel’s sleep and eating are much closer to normal, most of the time. Now, we can return the treatment focus to detoxing from mold exposure. Bind the mold, flush the mold, support the livers and kidneys while the mold goes down the drain! (What’s the childhood sing-song, I’m echoing? Oh yes! Wash the dishes, dry the dishes, turn the dishes inside out. One of those things I thought I would grow up to understand, some day, but no, I still don’t know how, or why, anyone would turn the dishes inside out.) 

Anyway! Upsides! 

1. The doctor is making Hazel’s treatment as affordable as possible, so your dollars will stretch as far as we can make them go. 
2. (And these are not in order of importance, or any particular order) The doctor is really good. She has focused her practice, for many years, on disabling neuro-immune diseases like Hazel’s, plus she works with other practitioners with similar expertise who share their body of knowledge.
3. The goal is not to continue house calls forever, but to make Hazel well enough to be able to go out to clinics and doctors’ offices, to get not only this doctor’s care, but the care of other practitioners, from endodontists to neurologists and more, who do not make house calls but whose care Hazel desperately needs.
4. House Calls have to happen just once a year, for the doctor to ethically and legally continue prescribing for Hazel. Other visits can be less-expensive Telehealth.
5. Hazel is getting the best care and treatment possible under the circumstances, while still resting as much as possible, and when all is said and done, the most vital treatment of all is Rest.

So today, one week before Thanksgiving–as we go into the holiday season which Hazel is completely unable to enjoy since she can’t participate in gatherings, gifts, travel, feasts, even a little special visit from a friend or relation–as we get ready for what in the US is mostly a season of greed, gluttony and celebrating conspicuous consumption, please, if you have any small dollars or big donations to spare, please go to this link and help Hazel, who so urgently needs to pay her doctor, so she can have some hope to someday have a more healthy and happy life.

Her one and only Thanksgiving visit has to be this visit, today, from her doctor. We’ll make it festive by making it affordable, and full of hope.

Thank you!