There’s No Place Like Home!

Dear Friends, 

A Sort of Post-Covid Comeback

It has been a while since I’ve blogged and actively fundraised. COVID interrupted Hazel’s specialist care, so we were in a holding pattern, with enough help for her non-covered expenses from a few devoted friends. Plus that extra push when her service dog turned out to need meds and annual testing. Now, I’m back with hat in hand, for a new and actually kinda exciting reason.

There’s No Place Like Home!

First the Bad News

Remember in September of 2019 we moved to escape mold? It’s back. That is, our new home turns out to have mold problems, too. In January of 2020, mold bloomed on the living room ceiling. Although I showed the landlord information from the state department of health, explaining that moldy materials must be removed, he insisted on just painting it over… and communication only went downhill with him from there. Turns out some landlords, as soon as you say the word, “mold,” start thinking you’re trying to bring a trumped-up lawsuit and fleece them. Of course, all we wanted was a healthy home. 

We hoped the mold problem here was so small that the paint-over might at least help, and for a little while our health improved, but then we got worse again, and then, mold bloomed on the ceiling of Hazel’s bedroom, of all places the worst possible. 

We had been following the best moisture-deterrant protocols, including running a dehumidifier*, an air purifier**, and the central heat with the best HEPA filter we could get, but still, here we were with yet more mold, so I called a moisture consultant and he had a look. Turns out there should be baffles around the vents under the eaves, to keep insulation from stopping up those vents, and in the absence of said baffles and/or sufficient insulation in the eaves, you get a lot of condensation, especially with a patch job on the roof instead of the full repairs a roofer recommended. 

This landlord is penny wise and pound foolish. He won’t do a proper repair, and as a result, his house is moldering away, and our health is suffering. So once again it’s time to move.

Meanwhile, family members made a point of informing me that they could not be counted on to help Hazel in the event of anything happening to me. Someday, something will happen to me. That’s life. Would Hazel have to move yet again? How could she find someplace sustainable and mold-free, when she has trouble even speaking on the phone?

But Now the Good News! 

As this is the second time we’ve found ourselves in this situation with the mold and the landlords and all, I was wishing I could be a homeowner again, responsible for my own repairs and able to choose to have them done right—and leave Hazel with her own home, perhaps also to provide housing to a live-in caregiver to help her out. Well, it turns out that’s a possibility! 

We have extremely limited income, so we receive housing assistance through HUD’s Housing Choice Voucher (HCV) program, and, as a disability accommodation, the local Public Housing Authority has agreed to grant us access to the HCV Homeownership Program! 

This won’t happen overnight. I’m doing a deep dive into research and success will require pulling many pieces together and jumping through numerous bureaucratic hoops. A lot will depend on lenders and underwriters and bears, oh my! I’ve got to be brave but also patient, as we go down this yellow brick road. We could be in a our own home in a few months, or we might still be searching three years from now. 

But the exciting news is, we have the green light. Or, to stick with Oz metaphors, Glinda has put the ruby slippers on my feet and the Munchkins have pointed out the path. 

Wanna be a scarecrow, a tin man or a lion? If you can help us on our way, any contribution you can make, large or small, will help with the costs from research assistance, to a down payment, to closing costs, to the cost of actually moving—this time, at long last, to our own, permanent home. 

Historical Note:
I was a homeowner at the time we got sick, on May 5, 2007, but just as illness made me fall behind on payments, the 2008 mortgage crisis hit and the bank forced me into foreclosure. Then California Attorney General Kamala Harris did what she could for homeowners, but my home was already lost to me, and the payment of, I think it was $1000? was only a token of the state’s acknowledgment that I’d been swindled. It will be a nice piece of poetic justice, to have the government now help me obtain and maintain a home of our own.

Your Gift Brings Our Safety and Security

Better health for us both. Responsibility for our own home. Sustainability for Hazel into my failing years and beyond. All of this, at less cost to the taxpayer than the institutionalization which Hazel, with PTSD on top of M.E. on top of Autism and more, would never survive. This is the answer we’ve been looking for, and your help can get us there, so please either contribute directly to Hazel’s ABLE account, or, if you prefer, use PayPal and contribute via the link at our wonderful friend Heather’s blog: Pathways of Healing.

ABLE contribution information:

Use this link to make an “e-gift” contribution to Hazel’s CalAble account (which is great because it’s non-taxed.) https://www.ablegifting.com/CA/DmQy8d

What you will see there is a screen that looks like the picture below. Thank you, thank you so much–and your little dog Toto, too!

  • * Love and thanks to family for the gift of the dehumidifier! ** Love and thanks to a kind friend for the gift of the air purifier!

Angels and Heroes and Docs, oh my!

In these days of covid-19 pandemic, we’re all Dorothys, adventuring through a strange new land full of formerly-unimaginable fears. For someone like Hazel…

By William Wallace Denslow – Electronic Text Center, University of Virginia Library, Public Domain, https://commons.wikimedia.org/w/index.php?curid=3476869

In these days of covid-19 pandemic, we’re all Dorothys, adventuring through a strange new land full of formerly-unimaginable fears. For someone like Hazel, who was already mostly-bedridden, the pandemic might not seem to change much, but it does add new anxieties. Hazel is among the most vulnerable, especially for her age group. And today, the fifth of May, is the 13th anniversary of the sudden severe flu-like illness, possibly H5N1 or mononucleosis, from which Hazel never recovered but only got worse and worse. Nevertheless, I have news of progress, thanks to our angels and heroes and docs:

First, some banking progress: Hazel now has a CalABLE account! Here’s to the heroes of legislature who made that possible by creating the ABLE program. It’s a special account to fund her disability-related expenses. It’s tax-free, and there are no fees deducted from your gift like GoFundMe, PayPal, and Facebook charge, so this is the best place to donate to help her.

I know the world is crazy right now, and it’s harder to be an angel if you’ve been grounded by illness or unemployment. It may not be possible to give, but if and only if and when you are “able,” please contribute to her new CalABLE account. Click the link to go to the Gifting Page: https://www.ablegifting.com/CA/DmQy8d to earn your wings.

And now, thanks to doctors, oh my, here’s some physical progress: Hazel is now sometimes able to tolerate wide-open windows, no curtains or blinds, on a bright sunny day! Last week’s phone consult with her doctor pointed up several ways, like that, where we can chart a tiny bit of progress. From always a dim room to sometimes a sunny room. From frequent sleep disturbance to frequent regular sleep patterns. From frequent to rare wishes for death to end the pain. From a lack of hope, to hope. 

The phone consultation was her first in many months so it was long, catching up on a variety of complex questions, and it will be followed by new medications, and none of that is covered by MediCal. For anyone new to her situation, here’s a quick summary.

Hazel is mostly bedridden by severe M.E., with trigeminal neuralgia (“the suicide disease”), and her condition is exacerbated by orthostatic hypotension (she gets dizzy when she’s upright), near-constant migraine pain, and PTSD, plus she’s autistic. She is extremely sensitive to light, touch, sound, and smells, so she can’t tolerate car travel, being handled, being in a clinic full of noise and stink. Between being autistic and the hypersensitivity associated with severe ME, Hazel is bombarded by, and her pain is increased by, every detail from receptionists typing and children crying, to the smells of chemical cleaners and the glare of florescent lights. Plus there’s the crash afterwards–the utter bone-crushing exhaustion of ME’s hallmark symptom, post-exertion malaise, lasts in Hazel for many months after any stress. Even a home visit leaves her sicker for weeks. A trip to see a doctor in a clinic or hospital is impossible for her. She has to have a doctor who does house calls and telemedicine.

Although we had help from social workers, therapists, caregivers, and my own doctor, our strenuous efforts to get Hazel treated at home by in-plan doctors only resulted in administrators, at the sole home visit service which takes MediCal, deciding that her case was too complex for them! Hazel was stuck.

By W. W. Denslow – L. Frank Baum: The Wonderful Wizard of Oz. With Pictures by W. W. Denslow. Chikago : George M. Hill, 1900, nach Seite 36, pdf., Public Domain, https://commons.wikimedia.org/w/index.php?curid=73899256

Fortunately we eventually found her current doctor, who unfortunately doesn’t accept insurance, but who fortunately works specifically with such complex cases of severe, chronic illness. The treatment has to be slow and gentle, but it is having results. 

We had to let up on treatment for a while after moving house, as that alone was a shock to Hazel’s system, but now she’s settled in a better, healthier house, and we can carefully increase the pace of baby steps. Also, the doctor is being extremely cautious around the pandemic, as Hazel is super-vulnerable. Her doctor even canceled a phlebotomy appointment to limit the risk of exposure. I’m grateful for that caution, and the patience it takes for a doctor to treat patients who respond only very slowly with only the smallest improvements. 

As always, I’m doing what I can to make Hazel’s life bearable. I’m planting a vegetable garden, and making the paths between plots wide enough for a wheelchair, in hopes that someday soon Hazel will be able to go outside for a few minutes and enjoy it. I’m also getting the bee-yard ready for tenants. A hive awaits and I’m adding to the bee-friendly plantings. I do my best to make meals Hazel can enjoy, and in general create a safe space and pleasant experiences from day to day, to counteract years of trauma.

The doctor called me “angelic,” and, “a hero,” for doing all I do to care for Hazel. I tried to deflect the compliment like I always do, then stopped myself. It’s true that I can’t imagine doing anything less (I can imagine doing more, but can’t actually do more alas!) but “I only do it because that’s the way I am, and because it has to be done,” is no reason not to accept that I’m doing some good. 

Thank you for being an angel and a hero yourself, who helps in the ways you can, because it’s the way you are and it has to be done. If you can, when you can, I know you will. This link will bring you directly to a page where you can make a gift to Hazel’s CalABLE account.

Unlike the case with the ruby slippers and home, it only takes one click the to go to the Gifting Page: https://www.ablegifting.com/CA/DmQy8d Thank you! And you, and you, and you!

By W. W. Denslow – https://archive.org/details/wonderfulwizardo00baumiala, Public Domain, https://commons.wikimedia.org/w/index.php?curid=69520775

Going Places

As I write this post, pandemic is keeping people home, all around the world. Everywhere, while people are staying home a lot, out of harm’s and germ’s way, they’re finding books to read, crafts to try, online adventures to pursue, and ways to visit that don’t include personal contact.

People are sharing links to freebie apps to pass the time of isolation, online museum tours, and such. The Metropolitan Opera, having canceled its shows, is offering streams to watch. Korg is giving away a cool music-making app. I love seeing the many ways people are reaching out to make this bearable, as a world community.

I hope the Covid-19 crisis will soon pass, taking as few people from us as possible. Meanwhile, amid jokes about this temporarily isolationist world being an introvert’s paradise, people like Hazel and me really are mostly living life as usual.

Going places just isn’t possible. On my bad days, I’m almost as bedridden as Hazel, just managing to get up and about enough to help her when she needs a meal, some water, or a listening ear. On my good days, maybe I can go out for an hour, or even two, but I can’t go far, because I’m on call 25/8.

I have made a few adaptations for the pandemic. I’m wiping things down with disinfectant, carrying hand sanitizer — not hoarding, because I don’t believe in it, but making my own ’cause it’s fun and you can enjoy your favorite scent in nontoxic disinfectant (we can’t tolerate bleach or other chemical-heavy cleaners anyway) …. I’ve lost track of my parentheticals, here… oh yeah so, anyway, I’m doing the hand washing and the veggie washing and whatnot.

But Not Going Places is scarcely an adaptation for me. I’ve canceled a non-essential few doctor visits, that’s all. Otherwise, it’s life as usual, thinking of so many places I’d love to go, and then doing my traveling at home. With, thanks to Covid-19, a few extra fun things to do, that people have been sharing around. Share on! Fun stuff though, not viruses.

And speaking of sharing, a friend reminded me to update this post with this link: If you can share some funds to help cover Hazel’s medical expenses, the place to donate is This Link, which her caregiver set up for her so kindly. Thank you!