Sunday, September 8, 2019

Mold Avoidance Hejira, Day 8

What is it like to move away from mold, packing most of your worldly goods away, perhaps forever?

I'm still back and forth between the two houses several times a day, despite one shorter drive three times a week being my usual limit. I know I'm partly running on adrenaline, but my ability to nap, and the refreshed energy I get in the evening, after napping in the mold-free new environment, make me suspect the mold avoidance is working.

I go back to the old place, sort our belongings, wash those we can keep in a special solution, rinse and dry them, then pack them to bring to the new house. The items we can get rid of go in Sell or Donate piles. Those we can't bring to the new house, but can't get rid of -- sentimental items, little treasures -- go into various types of storage depending on what they're made of, what they can be stored in, and when I expect to be able to revisit them. We don't have forever to get moved out of the old place, so there's an anxious feeling of urgency.

True, I'm running down, after a week of this. Friday night I fell asleep at 8pm, woke up to do some Hazel care, then went back to sleep until 5:30 am. Last night I slept for 8 hours, but those 8 hours started around 10pm. I just hit the wall and konk out, early in the evening.

Hazel seems to be a little tiny bit better, in general, but she vomited again yesterday and is still mostly-bedridden, getting up only to use the bathroom. She has the master suite so her bathroom is a the fewest possible steps from her bed. Her doctor told me Hazel should stop taking supplements until her stomach settles, so we'll see if that helps. Anyway, it'll save on the supplement bill. :/

I know that lots of my friends with neuroimmune disease wonder whether mold might be part of their problem. I would now say, if you suspect mold in your home, get it tested. If there's mold there, then at the very least try a mold avoidance vacation if not a complete move.

A vacation wasn't an option for Hazel, whose extreme weakness keeps her unable to be out of bed much. She was in intense pain during the car ride one way, here. But if we could have, we'd have gone to the high desert, with only fresh clothes and items that hadn't been exposed to the moldy house, to test whether we felt better there.

Moving away from mold was a gamble, but it was a pretty sure bet since the old place definitely tested positive for molds, and Hazel tested off the charts for mold-related toxins in her urine. So, while she's not better yet, I'm thinking she's just about got to get better after more time detoxing in the new home.

If you're able to help a little, we are still in need of clothing and many household item replacements, plus we need to raise funds for Hazel's house call doctor to see her by November at the latest, when she's due for an annual in-person exam, and sooner if possible. Anyone wishing to contribute cash can send it via PayPal to HelpForHazel@gmail.com, or if you'd like to shop for something from our Mold "Wedding" registry, shop here: https://www.amazon.com/wedding/share/creekfeet2healhazel We're getting married to a life without mold. :)

Friday, August 30, 2019

A Moving Appeal



We're moving! That's a good thing. With any luck (and lots of effort) we will leave the mold behind us. That alone may result in marked improvement in Hazel's health.

But it's a bad thing too. The effort already has me in crippling pain, and the stress is increasing Hazel's anxiety and panic attacks. We need a lot of help.

I'm doing my best to hold it all together while we break it all down and pack it all up and haul it all away. My in-home helper and a couple of friends have been amazing help with everything from finding us a new place, to prepping it to pass HUD inspection, but now that it's time to up and move, we need funding help--beyond all the normal expenses of moving, we need to replace essential household goods that we can't keep because of the mold.

I'm sorry I haven't got the writer chops right now to write a more moving appeal, for this Moving Appeal. I was going to create a "Virtual Housewarming" and make it fun and fanciful. But I'm so sick. I just have to keep it plain and simple, and get back to business, downing painkillers and packing boxes.

If you can't help, please don't sweat it. There's a lot of need out there in the world today, and some of it may be yours. But if you are able to help us,  please do. If you can't give financial help, every "share" on social media helps.

In recent months we have had our limits pushed to near the breaking point, but we did not break. We clung to hope. We stayed alive. Now it looks like at least on the housing issue, our hope is fulfilled, and we can make it over this hurdle with a little boost from our friends. And life could get a whole lot better.

Will it? I'll update again as soon as I can. Thank you!

Friday, May 17, 2019

Welcome, and thank you for visiting Heal Hazel.

So much has been going on with Hazel's health since I last blogged. I'll try to blog again soon, but for now you can read updates on the GoFundMe campaign.

If you've just popped in to make a quick donation, this button works great:


And if you're in California and are interested in Magdalene's Miracle to support Hazel's healing, please email:
magdalenesmiracle@gmail.com



Thank you for helping. 

Tuesday, September 25, 2018

Creek's Jumbo Birthday Wish for Hazel

Mama Creek here with another update. My birthday is tomorrow!

Baby Me


You can help me celebrate the day, jumbo style.

No, I am not quite as old as this card.


I would like to dedicate my special day to Hazel's health. That's not so different from the other 364 days, except I'm inviting you to join me in the effort.

The bad news:

Hazel just turned 25, is disabled since age 13, bedridden, and hasn't been able to leave the house in nearly three years. She's in constant pain with multiple complex chronic neuroimmune diseases, related and unrelated conditions, and co-infections, including trigeminal neuralgia ("the Suicide Disease"), severe ME, chronic Lyme disease, and orthostatic hypotension to name just a few.

Now, due to mismanagement of her case by the private health insurance company that administers Medicaid in her county, Hazel hasn't even got a primary care practitioner on board.

The good news:

A doctor with experience in these complex diseases and expertise with a variety of treatments is willing to take Hazel on as a patient, beginning with a thorough history-taking by phone, and a house call to establish care.

The doctor works with a world-renowned practice known for treating Lyme disease, the principal physician of which practice coauthored highly-regarded research a couple years ago. We're most fortunate to live near enough to that practice to get home care for Hazel from one of their doctors.

A little more baddish news:

That's a private practice which does not accept Medicaid, nor, in fact, any insurance. Getting by on sub-poverty-level disability, Medicaid is all Hazel has, and she doesn't have anyone but me to depend on for assistance. And I'm in the same boat! Disabled, with no disposable income.

Some really wonderful news:

Hazel's birthday fundraiser brought in 67% of our $2500 goal for starting care with that private practice. In fact, we now have enough in the kitty, in Hazel's ABLE account, to pay the doctor for the initial house call. People from all over the world come to see this doctor. More than a month after contacting them, we are still waiting for that appointment to even be scheduled. But the Practice Manager should be calling any day now to set that date.

The remaining amount we're looking to raise will go towards treatment and follow-up appointments. This is a really hopeful moment. It could be the turning point after over 11 years of suffering. Next September, Hazel might be able to come downstairs--or even go out briefly--to celebrate both her birthday and mine.

It will absolutely make my day (and year and life) if you can help me get Hazel the care she needs. The outstanding support for Hazel's birthday brought her renewed hope. She had been ready to give up.  Many thanks to all who were able to pitch in! You saved her life, truly. We will never forget.



But if you couldn't donate before, and want to now, please be my (birthday) guest! No amount will be considered mere peanuts; it all adds up. You are cordially invited to donate dollars, proffer pounds, leave loonies and gift gilders at this shiny clickable PayPal button:


Thank you for giving the best gift ever. And there's no gift wrap or postage required! You've made one mama's song a little sweeter.


Sunday, September 16, 2018

Hazel's Birthday Survival Fundraiser Update

Update... Wow! Thanks!

Financially, we're over 1/3 of the way there.

Hope-wise, we're 75% improved.

Adding up donations via PayPal and those via Facebook, you've given $846 to help keep Hazel on the planet. Thank you so much! That's 34% of the $2400 total we're aiming for.

Of that $2400 total, $1200 would pay for a house call from a doctor who has years of experience treating Myalgic Encephalomyelitis and Trigeminal Neuralgia. She works in a practice that received international attention for the principal MD's co-authorship of important M.E. research a couple of years ago, and we're really lucky that the practice is near-local to us.

While $1200 may sound like too much for one doctor visit, it includes travel time and two hours with the doctor. An initial visit of two hours is necessary for establishing care, because M.E. alone is so varied from patient to patient, and there are so many co-morbidities, so it's a really complex picture, taking a patient's history and deciding which tests to run.

The remaining $1300 will help fund everything from treatments to specialists. Hazel takes some expensive supplements and may be prescribed medications not covered by insurance. In addition, she's likely to be referred to a dental specialist whose CT scan can identify the damage done to her jaw during a botched extraction a couple years back, and determine whether her unbearable jaw pain can be addressed.

And of course there will be additional doctor visits--at home until Hazel's well enough to make it into their office-via telephone or internet whenever possible to keep down costs--and the doctor is aware that we're fundraising to make this happen.

Just seeing how completely the doctor "gets it," and knows what steps to take next, I'm feeling more hopeful than I have in a while.

And the doctor is a possibility because someone in her office saw one of my Facebook posts so, whatever else I say about Zuckerwhatsit, and however much I call his invention Fascboot, it does work to facilitate communication that can save a life.

Some people "get it" and are moved to tears to know the kind of hell Hazel has been living in, and to see the fights I have to fight on her behalf. Some people seem completely unaware, or just don't care.

I'm so grateful to you who know and care. Thank you all for the help and the hope you give us.

If you haven't helped, you still can...and if you'd like some more background info, read on in this blog. The post immediately previous to this one has some of Hazel's illness history and links to more information about Myalgic Encephalomyelitis.

Here's the button!
If you'd like a thank-you of some sort, I'll be glad to write you a poem or read your tarot, and of course... just... wow, thank you!





Friday, September 14, 2018

Hazel's 25th Birthday Hopes

Today is Hazel’s 25th birthday. She’ll be in bed all day, in pain. The landmarks others celebrate are hard for her. She has been sick with Myalgic Encephalomyelitis (M.E.) since she was 13. 

For her birthday, I hope to raise enough funds to get Hazel a home visit from an M.E.-literate doctor. I hope you will help.









Hazel lost her entire teen years and early twenties to painful and debilitating illness. Her case of M.E. is very severe.  She is bedridden. Tooth brushing is difficult, bathing near-impossible.  

Making things even tougher, I (her mom) have M.E. too, though my case is less severe and I'm not mostly-bedridden but only mostly-housebound. As I am Hazel's sole immediate family, we struggle against many challenges.

Recent research shows people with M.E. suffer greater debility than those with M.S., yet funding for M.E. research is far less—it even falls below funding for male pattern baldness—and there's no formal assistance available to help patients cope. That’s why we have to reach out to you, to help Hazel.

M.E. costs patients an average of $24,000 per year. Hazel has only been able to make one visit to a clinic that focused on neuroimmune diseases like M.E., Fibromyalgia and Chronic Lyme Disease. That was years ago—the doctor she saw retired—and the search for care resumed. 

Even to get basic primary care, in-home, is near-impossible. Every M.E. patient suffers from a slightly different array of symptoms, so there’s no one-size-fits-all treatment. Care must be highly individualized. To get a house call from a doctor who has the expertise to solve the individual puzzle of Hazel’s illness, is going to cost $1200. 

Thrilled to have found a competent M.E. doctor, I told one friend the price we’d been quoted. She gasped, and said, “That’s too much!” But that’s for a two-hour intensive first visit, including blood draws, plus travel time. To see such a doctor in their clinic would cost at least $1000. And how much money is too much, to keep your child alive? Surely more than $1200.

Our resources are drained constantly, with no improvement in Hazel’s health. The cost in dollars and in effort, of everything from pain relief to dietary supplements, adds up to make it impossible to meet daily needs, let alone basic medical care, just to maintain her mere survival. 

Never having been able to work, Hazel lives below poverty level, on disability, and while she does have Medicaid coverage, that’s the most minimal insurance there is, and doesn’t cover many of her special medical needs—including this big birthday blowout: this effort to celebrate her quarter-century by scheduling a home visit from a doctor who can actually help. 

People younger than Hazel spend more than $1200 on Spring Break or Prom night. People Hazel’s own age spend more on a wedding gown or used wheels. Hazel can’t date, dance, or drive. Please help me raise the funds she needs to see a doctor who can give her some hope of enjoying future years, as she has been unable to enjoy the past dozen years. 

Without specialized care, the only improvement Hazel can imagine is the release from pain that her death would bring. With specialized care, she may recover a large percentage of normal function. She may yet dance, one day. 


Please help her see that day. Hazel has made it to her 25th birthday, and I’m celebrating that, by doing my best to keep her alive and hoping, but she needs your help. 









Thank you, and best birthday blessings! 

Monday, August 13, 2018

Help for Hazel - A Fund for Ongoing Hope


The last time Hazel went out just for fun: early summer of 2014
Hazel made it to the beach! (Once upon a time.) I drove her, and helped her down the path, to a place near the parking lot where she could sit on the sand and see the waves, breathe the salt air and feel it blow her hair about. She couldn't run in the waves. She couldn't even make it down to the waves, a few yards away. But she could watch gulls circle, squish her toes in the sand, and feel a little more alive.

Paybacks were hard, of course. That's how M.E. works. Post-Exertion Malaise (PEM) knocked her out for weeks afterwards.

That summer seemed hard enough. The trip to the beach had been her first outing in years. Now, four years later, it's her last outing just for fun, and it has been years since she could even make it out to a doctor's office.

This summer has been beyond difficult. It has been an ongoing nightmare. Hazel started out the summer pretty certain it would be her last. The pain has just been so intense, the only escape from it that she can imagine is death. She didn't know how long she could go on living, with the pain.

She hasn't been downstairs in months. She hasn't been out of the house in years. We've been able to get a doctor in to see her, but then the doctor couldn't prescribe, because we weren't able to get a home visit for phlebotomy, and Hazel can't make it out to a lab.

Every day is another endurance test. Pain and exhaustion not only keep her flattened to her bed but make it nearly impossible for her to think. On a good day, she imagines doing some drawing, but then finds she hasn't got the energy. On a bad day, she just imagines being dead, and at last free of the pain. Day after day, she's been making it through, heroically.

I told her there's some good research getting done, now, and that we might actually see treatments that can help. There's a prescription her doctor is willing to try, if we can just get that blood test done. I get on the phone and emails, and I chip away at the medical bureaucracy. I wind my way through endless twisted corridors of insurance voicemail. I keep trying to bring on the hope.

There are supplements that help, but they cost money. Her service dog helps, so very much, but the pet food, gear, and vet care cost money. The internet, where she gets what books and movies she can consume, also costs money. Fresh vegetable juice is a big help, so we bought a juicer. Organic produce seems to make a difference. Again, more money.

With only the income provided by SSI disability -- below poverty level -- I'm sure you can imagine how hard it is to come up with money for all those beyond-merest-subsistance expenses, which are, to her, absolutely vital. They're keeping her alive.

We've been grateful for donated funds that covered everything from supplements to vet visits to the juicer. But the funds are running low, so for her 25th birthday, coming up September 14, I'm fundraising once again. What a great birthday gift it would be, to have the certainty that she can afford the things that have made life bearable and kept her with us; kept her hopeful.

Your donation will help with Hazel's ongoing care, and it will sustain her ongoing hope. You're keeping her alive, truly.

There are a couple of ways you can donate. The best is to make a payment directly into her ABLE account. To do that, go to https://www.ugiftable.com and enter the gift code A97-P1L . You'll then be prompted to enter your bank routing number and checking account number. This will be a one-time transaction; your details will be confidential and will not be stored.

Or, you can use the PayPal button. Unfortunately, PayPal will charge a fee, plus it won't be possible to transfer the gift directly from PayPal to her ABLE account. But she can make some, though not all, of the purchases she needs, with PayPal, so that helps, too. If you'd like to use PayPal, here's the button:






Thank you for sharing a little bit of summer's sweetness with Hazel!