Sunday, April 15, 2018

Treading Water

Last week's torrential rains closed our road for a day. Coming home from physical therapy I had to take a detour. The floods didn't reach our home, but "Treading Water" is a good description of our current situation, as we try to keep going and not drown in the difficulties.

It's hard to write an update when there's no exciting, upbeat news to share. In fact, since the last update, the only changes are new challenges.

Contributions help, so here's the PayPal button, and if you would like more of an update, despite no good news, read on!

First, a quick summary for anyone who isn't familiar with Hazel's plight. She's been terribly sick for nearly 11 years, since she was 13 years old. So she lost her entire teen years and early twenties to illness. Her diagnosis is severe M.E. and Fibromyalgia with Lyme-related co-infections, plus PTSD from traumas suffered before and after her contracting neuroimmune disease.

Making things even tougher, I (her mom) have M.E. too, though my case is less severe and I'm not mostly-bedbound but only mostly-housebound. At any rate, with my being Hazel's sole immediate family, we struggle through many challenges.

Recent research shows that people with M.E. suffer greater debility than those with M.S., yet the funding for M.E. research is far less, and there's very little assistance available to help patients cope. M.E. has been so misunderstood for so long, and so under-taught in med school, patients beg our doctors to watch a recent documentary, "Unrest," to give them some idea of what we're going through.

(We've gotten our in-home helpers, two doctors, a social worker and a therapist to watch Unrest, and they've all been very grateful for the revelation. A couple of friends have watched, and an extended family member said they would watch. I made the flyer below to encourage neighbors to see it as well. It's not only informative, but a very moving story. If you haven't watched, please do! And if you want to yoink the flyer to post in your neighborhood, please do that, too!)
So that's the background in a nutshell. Now for the current situation:

Hazel has been too sick to get out and see doctors, for over two years, so we've been struggling to find a health care provider who will come see her. One nurse-practitioner, covered by her insurance, dropped her as a patient, claiming that Hazel was "uncooperative" because she was asleep when the NP came to visit, having been awake for about 36 hours previous and finally dropped off just a couple of hours before the visit.

Another NP offered to come see Hazel for $500 per visit, and we were thinking we could fundraise to cover those visits. It would be worth the money and effort, we figured, because this NP worked with a medical group that specializes in Lyme disease, ME and related chronic diseases. Their lead MD has even been a co-author of recent published research. So if anyone should understand and be able to treat Hazel's condition, someone from their office should!

But then that NP notified us that she could not make house calls to Hazel after all. Just last month I received this message from her administrative assistant:

"I forwarded your e mail to Dr. G and his nurse practitioner K. Unfortunately it will not work out for K to do a home visit for your daughter. Your daughter has a complicated case and we are just not set up to take on this kind of case on a home visit basis. I apologize about the inconvenience." 


If Hazel's case is too complicated for the experts, well... as you can imagine, we're beyond frustrated and frantic. But you can't stay frantic when this sort of thing goes on, day after day, for years. You just tread water.

Meanwhile, there is one doctor within a huge HMO who is trying to figure out a way for their home health branch to make house calls to Hazel. Sadly, there's a Catch-22 because, in order to make a referral to Home Health, they have to see the patient in their office. But the whole reason Hazel needs Home Health care is that she can't get into their office!

For now, our only hope is from a new herbal concoction we're trying: a tea of about 16 herbs including immune support, anti-inflammatories, and, I guess you'd call them anti-hypotensives? Herbs to increase her low blood pressure and circulation. But her stomach problems make it hard for her to take the herbs daily, so we're looking to get a juicer so we can add them to carrot juice, which she likes and tolerates well.

Dietary problems have been a big concern recently. Hazel's finding meat difficult to digest. She gets along okay (treading water) on a vegetarian diet with lots of alternative proteins, but her frequent migraines are worse when she can't add the high-protein boost of an occasional meat dish. She gets protein powder in smoothies she can sometimes drink, plus she's very fond of veggies and particularly greens, miso soup with tofu, and our wide repertoire of legume dishes, but sometimes even the softest are very hard for her to chew. She struggles with intense jaw pain that is sometimes so severe she almost just wants to die.

She doesn't want to die, really. I'll be clear about that. She isn't suicidal. And she doesn't have Depression. She has secondary depression due to her huge medical challenges, and she has PTSD, but she also has interests and enthusiasm and so much she wants to do with her life.

However, she does want the pain to stop and we haven't found a way to make it stop. She has been offered opioid prescriptions but doesn't tolerate those well. Medical cannabis (high-cbd only and vaporized, not smoked) helps take the edge off the worst of the pain without giving her nausea or unpleasant narcotic effects, but she's still often in too much pain to sleep.

(Narcotics make things worse in part because of nausea and dizziness, but also because they can trigger flashbacks to the abuse, and thus panic attacks. No hell is hot enough for the people who abused our very vulnerable Hazel.)

We hope to try oxygen to get her more mobile. It would help with the orthostatic intolerance. The main reason she can't get out to see a doctor is not the pain, though that's a contributing factor, but the terrible dizziness. So again the Catch 22 -- she can't try oxygen without a prescription, can't get a prescription without seeing a doctor, and can't see a doctor without oxygen.

Not only a primary care provider, but a jaw pain specialist, and a dentist, and an endocrinologist, and a neurologist, a consulting geneticist, and a physical rehab specialist for wheelchair referral --- Hazel ought to be seeing all of these, but can't get out to see any. And we just keep going around in circles, treading water, trying to get her the primary care which will be the key to the rest of her care.

Now, as if Hazel's challenges aren't enough, I, myself, am facing new physical challenges. And since I'm Hazel's lifeline, her sole point of contact with doctors, pharmacies, in-home helpers and any hope of improvement, my challenges are challenges to her as well. A bad fall has decreased my mobility, making it harder than ever for us to cope with life in our two-storey home, while we can't afford to move to a single storey ground floor apartment. I've been putting off needed surgery because I have to be able to climb stairs to care for Hazel, but we're going to have to find a way around this.

We're scheduled to talk to the big HMO doctor, and our IHSS case worker, tomorrow. Maybe they'll be able to offer some new ideas. Most likely, we'll continue treading water, waiting for realistic solutions.

Your contributions are a huge help, however. The herbs and supplements Hazel takes are expensive. SSI Disability barely covers basic living expenses, even with rent subsidies and MediCal figured in. So besides specifically medical expenses like herbs and supplements, there are other things that help Hazel that we can get with your contributions, like decent headphones, a powerful juicer, a humidifier that doesn't make a lot of noise. Plus, we're saving what we can in her ABLE account, so that she will have a little buffer to help her transition to some other living arrangement when someday I'm no longer here to be her lifeline.

So once again, here's the button:

I'll be happy to express my thanks in any form from poems or prayers to tincture or a tarot reading! Just let me know. And if you can't contribute, but you'd like to help, please share this post. Thank you for helping Hazel survive, keeping her head above water!

Gratefully, Hazel's Mom and Lifeline, "Creek." 

Tuesday, November 28, 2017

Major update: Electric Miracles

It’s major update time. Plus it’s holiday shopping time! When you’re out in the hustle bustle, please do not reward that annoying bell-ringer, but instead drop a donation to Hazel. 

Shopping of any sort is quite a thing for people in the best of health. For Hazel, it’s almost impossible. But we’ve got a new way to help Hazel with her shopping. She now has an ABLE account; more about that below. So please do help her with her shopping, if you’re able.

This one's too moldy.
The frenzy that begins with a bang at Halloween and ends with a post-New-Year’s whimper passes us by almost unnoticed, as Hazel can’t go out shopping at all. Given enough time and help she can choose things online. We order online, or I go out shopping for her… and exchanging… and exchanging again. Whether it’s clothing or equipment, we have to get things into the house and keep them for a while until she has energy to try them out for fit, comfort, and functionality. We usually have to repeat the process three or four times for any one item, whether it’s a blouse or a pair of headphones. Or even a car!

This past year has marked some major milestones, and one of those was replacing of the car we fundraised for—a 20-year-old Jeep Cherokee Sport that itself had replaced our moldy old 30-year-old Toyota Camry. The Jeep was the only thing we could find in our price range at the time so I took a chance on it, but it turned out to be way too noisy and bouncy a ride for Hazel. 

This one's too noisy.
So I thought, what would be the quietest, smoothest, and big-enough, ride? With the able assistance of a helper who once worked at a dealership, I went out test-driving new cars just to get a feel for what’s out there, thinking we’d have to fundraise again for maybe a 10-year-old vehicle this time. But behold, a miracle occurred, just about! 

I found out the absolute best thing: an electric vehicle — the Kia Soul EV — and there were rebates and incentives from the manufacturer, the dealer, the state, the county, and the electric company, that made it an amazingly doable deal. So using funds from the Jeep’s sale and additional contributions for a down-payment, I leased us a brand new Soul with super-low monthly payments and maintenance costs so close to zero, it practically pays me to drive this car. 

This one's just right! 

So thank you once again for making wheels possible! 

Another special thanks goes out to KW who purchased a highly portable electric wheelchair for Hazel. It’s another miracle. It will be delivered by early December, and it’s so lightweight and compact it can even be folded down and taken on an airplane flight. It’s an important piece of the transportation puzzle because it will fit easily into the Soul, making any appointment a smooth trip.

Non-electric but heartwarming news is that we have Hazel’s Hound. 

Although we failed to reach our fundraising goal to cover professional training, we found the perfect dog at a rescue adoption event and committed to training her ourselves. Luckily she came with good, solid, basic training. Also luckily, I’ve been able to find some good resources and precedents for training one’s own service dog, so with those as encouragement we’re working on everything from retrieve, to help me up (from the tub, or from the floor after a fall) to not only finding and retrieving items but carrying them between us. 

Reina, Hazel's Hound
Reina is a super-mellow but strong and sturdy mix of Shepherd and Ridgeback, who has excellent grocery store manners, is getting pretty good at her dining out behavior, and even knows a couple of standard dog tricks so we can show off her obedience to anyone who’s dubious. The physical support she’s learning to provide is valuable enough, but already her emotional support makes nightmares and panic attacks far less frequent. 
Reina in Training

We’re still having some trouble with those, and with neighborhood noise, and the sort of special sleep disruption that troubles most people with Myalgic Encephalomyelitis, so our goals of getting Hazel out for urgently needed dental care and specialist appointments is still unreached; and she still needs financial help to get that dental and medical care and supplies, as well as some schooling and art supplies that will help her occupy her mind in positive ways. All of which need brings me to the topic I mentioned up top, of the ABLE account

ABLE accounts were set up to assist people who became completely disabled by the time they were 26 years old. A person disabled at such a young age has not had an opportunity to complete school or training and then work enough to amass any sort of nest-egg. 

So she not only has no retirement account and no opportunity to create one, but she also has no funds set aside to cover the needs her disability creates. Like the need for a special desk chair, that reclines comfortably so she can rest right there when she gets dizzy. Or the need for text books and supplies so that she can complete a high-school education at home and move on to college-level study, albeit at a very slow and broken pace, as the pain and brainfog allow. 

Also, Hazel can’t count on her mom at her side helping her all her life. Though disabled myself, there's so much I've had to help her with. The IHSS hours that provide some assistance with household chores and errands do not cover the vast range of additional help she needs, from choosing a desk chair or text books and school supplies, to handling paying bills or banking, to waking at all hours of the night to help her cope with nightmares or noise. Someday, she’ll need a fund on hand to hire help beyond what IHSS provides. 

But how to raise funds for all these things, and keep the funds available, without her being penalized by losing her SSI Disability income? A trust fund might not affect her SSI Disability but the funds aren’t accessible and the cost of setting up the trust is prohibitive. I was researching, trying to find a way to create a trust that could work, when I learned about the new ABLE account. But it still took a few years for the ABLE legislation to become the ABLE reality.  

Now, ABLE allows a disabled person, who was incapacitated by the age of 26, to keep a certain amount of funds in a special savings or interest-bearing checking account, earn interest, and access those funds for medical expenses, education, even travel and entertainment. So having an ABLE account will really mean a chance to live a fuller and more satisfying life. 

And while we haven’t yet set up a paypal that goes directly to the ABLE account, that's in the works, and meanwhile you can either contribute by paypal which we’ll then transfer into ABLE, or you can transfer funds directly from your bank to Hazel’s ABLE account by following this link to and entering the Ugift Code:  A97-P1L   That code will send the funds to the correct account. 

Please note that it's going to say it's going to Coll. That was Hazel's birth name. Until she can change all her paperwork and ID, that's what shows up on financial forms. So it will say "Coll" but Hazel will receive a notification and Hazel will thank you. Well, I’ll help her get the notification, and I’ll help her thank you, for helping to make not just the season, but life, bright. 

And as I mentioned earlier, in case it's easier for you, the PayPal button still works. It's just one tiny extra step for mom, to transfer funds to the ABLE account, and I'm happy to do that. It's all-electric, and easier on the ears than ringing a bell!

Wednesday, November 23, 2016

What Life is Like Without Chewing or Smiling #HealHazel #YouCaringGives

Wishing I could surprise and cheer her somehow, I made a baked apple--a soft food and a bit of a treat. But when I took it up to her she only felt bad, having to turn it down. "I'm sorry--I can't eat it right now--the pain is bad."

Anyone want a baked apple? 

So my effort backfired.  Not only was she unable to enjoy the baked apple, but she apologized for my wasted effort, and I could see how badly it hurt her even to move her mouth to talk, to tell me she couldn't eat. So I had just made her feel worse...

And that's how it's been going since early May.

After the naproxen and acetaminophen kick in, maybe she can handle the baked apple, or a smoothie, or sorbet. Maybe tomorrow I can get her a flowering plant, for Thanksgiving, instead of a feast, or maybe we'll have news of progress towards her puppy. Maybe I can find a funny story to share with her.

My job is to conjure that rare smile.

Okay, so here it comes again, the link where you can help me ease her pain and repair her smile. Because as nice as flowers and funny stories are, and as much as she needs her service dog, she really needs to be able to eat.

Oh, and please nominate her to win a $500 donation from YouCaring by leaving a message, at the fundraiser linked below, including the hashtags #YouCaringGives and #HealHazel.

 Heal Hazel with TMJ Specialist and #YouCaringGives


Here's a pic of Hazel (on the right in red) with her sister and me, once upon a time, at the beach, when all was not gloom and doom (just so you know we're not some kind of dismal ghouls).

Snapped at the beach on a happier day. 

Monday, November 21, 2016

What fun is Thanksgiving when you can't visit or chew? #YouCaringGives hope to #HealHazel

A quick thought before you go back to the holiday whirl.

What is that whirl, but the joy of visiting with family and friends, and the pleasure of sharing a feast with them? Thanksgiving brings up the warm image of loving faces around a table, and afterwards, that satisfying feeling of being full of food and surrounded by love.

 Maybe the travel is a pain. Traffic, bad weather, short tempers, yeah, it can be rough!

But what if you couldn't do any of it? What if you couldn't travel, couldn't sit down at a table, couldn't gather with friends or family -- what if you couldn't even chew one bite of turkey?

That's the situation Hazel is in, so please help her. All we have to do is give, and the jaw pain specialist will do the rest. Even the smallest donation will be a big help, because you can help enter Hazel to win an extra $500 from the best ever crowd funding site, YouCaring. Just donate a dollar or two, but be sure to say in a message with your donation,
"I nominate #HealHazel for #YouCaringGives." Those hashtags could be the key to her getting a big boost towards her goal. And now, in the spirit of the season, Thank You! For more information see Heal Hazel with TMJ Specialist and #YouCaringGives

Saturday, November 19, 2016

Arf! Argh! Help Hazel chew!

$1740 raised toward our $3500 doggy goal = Arf!

$6000 needed for Hazel to be able to chew = Argh!

But we won't be stopped just because the goal is bigger. We've been able to do so much to help Hazel so far, and I'm sure we will be able to help her chew.

Chew?? Yes, chew. As if life was not already painful enough, for Hazel, her jaw pain is now so extreme she can barely chew. For more information see Heal Hazel with TMJ Specialist and #YouCaringGives

Monday, August 8, 2016

Join the Puppy Party - a Heal Hazel fundraiser for Hazel's Hound. 

When I met with the trainer for the first time, I was blown away. A service dog could do so many more things for Hazel, than I had imagined! 

Blown away.

I had told her Hazel needed a support dog because of PTSD, and first, she blew me away listing so many ways a dog could help. Besides providing the emotional support of a caring companion, and comfort in uncomfortable social situations, the dog could be trained to fend off impending panic attacks, interrupt nightmares, and even secure the perimeter. Joellen has trained service dogs for soldiers with PTSD, so she knows the wide range of needs a person has, when coping with the aftermath of brutal violence.

Then Joellen asked me, "what are Hazel's physical limitations?"

I dismissed the question. "Well, she has M.E. and there's not much a dog can do about that."

But Joellen was about to blow me away again. "Okay, but tell me about her physical limitations anyway."

So I told her about chronic pain, exhaustion, and confusion. I figured there wasn't much a dog could do about those. Then I added that she gets very dizzy and is extremely weak, so getting up from the bathtub, or climbing stairs, can be a problem.

"A dog can help with those!" Joellen said.

We don't know yet what breed of dog or mutt Hazel will get, but Joellen will help us find good candidates and test them for personality and trainability to make sure Hazel's Hound is able to handle all its work. 

But wait, there's more! 

I hadn't even thought of it, but, yes, a dog can be trained to help Hazel up out of the tub, to go get help if she falls and can't get up, to steady her on the stairs, and of course to fetch and carry things for her. When my own M.E. makes me unable to carry something upstairs to Hazel, her dog could do that. And when I'm too ill to push her wheelchair, the dog can pull it!

Her dog can be trained to remind Hazel to take her meds, and alert her if there's someone at the door. Those are things I take care of now, but with her dog, Hazel could have a better chance of someday living independently.

We all need somebody to lean on. 

Hazel's hound will be someone for her to lean on, in so many way. Everyone could use a friend, sometimes, but imagine being 23 years old and housebound for ten years --- never having been well enough to finish high school, go to parties and concerts, even go to the library or a park, and definitely not well enough to get a job (Well okay, she did have one paid job as a kid, before she was sick, doing what? Dog walking!)

Imagine turning 23 not being able to move away and go to college, not being able to play the musical instruments you once loved, barely being able to express yourself at all.

And then imagine not only having Severe Myalgic Encephalomyelitis, but also having been the victim of a horrible attack while still a pre-schooler, and suffering from the horrifying memories that trigger panic attacks and nightmares. Hazel often stays awake for 40 hours or more, at a stretch, because the pain is so bad it keeps her awake, only to fall asleep and have nightmares so bad they wake her, and she doesn't dare fall asleep again.

Life looks so much better. 

Now imagine that young woman, tormented by pain and horrors, but having a big, reliable, supportive companion dog beside her. Life looks a whole lot better, doesn't it? Especially if that dog can increase not only her comfort but also her mobility and independence.

Dog Days are here and Birthday is coming.

It's now the Dog Days of Summer, and Hazel's birthday is coming in mid-September. So now is the time for us to gather up the money to give Hazel her happiest birthday present---one huge, happy and huggable hound dog.

Please give what you can. Here's Joellen's estimate: Dog: $350 - $1500
Initial testing, boarding and training for 4 to 6 weeks $2000 to $3000
Lessons for Hazel with the dog, three to five: $150 to $250
Intermittent boarding and training at certain critical developmental stages: $1000 to $2000
Total: $3500 to $6750

Matching Fund!

That's a lot of money, but a generous donor K.K. has put up a matching fund to get us started. If we can raise $1000 this month, she will match that with an additional $1000, so by the beginning of September we'll have enough to get the dog and start the training.

Other Funding Sources

We're completely disabled, with no savings to draw on, but we'll raise what we can by selling some classic old toys, doing tarot readings, and selling nontoxic, biodegradable nail art at/Pajamaberry Jamberry Nails, and an online writers' community has offered to hold a writing contest to help raise funds, too, so watch for details on those fundraising activities in later blogs.

Thank you! 

If you can help with a donation, thank you. If you can help by sharing this blog on social media, or supporting in any other way, thank you for that, too! 

Tuesday, June 28, 2016

Clean Wheels: no more Molds-mobile!

Hooray! And whew! We did it, thanks to you, KM, KK, MJ, EB, JB, TW and KO, and thanks to everyone who shared and cared. Greatest gratitude. And yes, we can fit two people two wheelchairs and a large dog. Next step will be getting, and training, the dog!

The New Wheels

Thanks also to Bill from Vinnie's where they clean up the donated cars and give them a thorough mechanical going-over, then sell them at a very reasonable rate! That's Bill's arm on the right, above. 

Behind the wheel, Hazel's mom smiling additional thanks at KM who was not only the chief donor and instigator, but also drove to the car lot and provided moral support and spiritual guidance and muscle power. A generous friend!