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! 

Thursday, June 16, 2016

Next Phase - Drive for Wheels

This '88 Toyota Camry served us well for 7 years but now it's time to face it... We've been sick and sicker 9 years, we're both needing wheelchairs when we go out, and Terwilliger Toyota, besides being a bit small to accommodate the chairs,.has really gotten too decrepit to be on the road.

 Leaking badly in winter rains, growing mold that can't be cleaned completely out, riding so rough and noisy that even a short drive is torture to poor Hazel, AC and heater equally broken, and various electrical stuff constantly acting strangely, poor old Terwilliger is alas going to have to retire before making it to 300,000 miles. 

The great news I just got, though, is that a friend and philanthropist is willing to contribute $2000 towards Terwilliger's replacement. Also good news, I'm seeing some vehicles that look like good possibilities for only a little more than that amount. Maybe $2400, maybe $3400 -- so we almost have enough, already!

Just to be sure we've got tax and license covered, I'm going to shoot for $4000. If our replacement vehicle costs less than funds raised, anything left over will roll into our Service Dog Account. When we go into full fundraising mode for Hazel's Hound, I'll blog again to tell you all the wonderful ways that the dog will be trained to support Hazel physically and emotionally.

For now, it's the Drive for Wheels. Let's roll!
I'm willing to sell my Trinity College Octave Mandolin for $600 to help make goal. But I'm hoping you'll Donate!

23 June, Goal Achieved!
Thank you so much, KM, JB, EB, MJ, TW and KK! You put us over the top, we're going to get our car, and We are so, so grateful!

19 June, Fast and generous responses from kind friends, are moving our thermometer up. Thank you!

Tuesday, March 29, 2016

Quality Sleep: the Sleep Number Bed Arrived!

Hazel's new Sleep Number bed arrived at last. Actually, it arrived very promptly after we got all the nonsense cleared up. She's already been sleeping on it for a couple of weeks!

Hazek's Sleep Number Bed, cat tested and approved. 

We're still working on a lot of sleep issues, but this bed has really solved the comfort issue at last. So, once again, I want to say how very grateful we are to everyone who contributed and made this happen. It's a huge improvement!

She still has problems with day/night reversal, nightmares and panic attacks. The reversal issue might respond to melatonin. She tried it before but perhaps for too short a time or at too high a dose, so we'll revisit that. She has paradoxical reactions to most other sleep meds: that is, instead of helping her sleep, they make her jittery.

For the nightmares and panic attacks, the treatment suggestion that she's most interested in persuing it a dog! That's a fun treatment! And very practical, as a service dog can not only ward off panic attacks and wake her from nightmares, but help her up from the floor or bath or bed when she's having trouble standing, pull her in her wheelchair, and be a support when she needs somebody to lean on. So, the next step in our fundraising efforts will be toward her Service Dog and its training.

Meanwhile, when she can sleep, she's sleeping better and waking with far less pain, and that is thanks to you kind people who have shared the blog and contributed donations or bought things to support our effort. Thank you! 

Monday, February 15, 2016

Sweet Dreams Deferred, Sweet Expectations Revived

Good news! After long and strange delays, the Sleep Number Bed purchase is finally happening. The company at first failed to honor the offer made by the store manager, but after numerous calls with Customer Support that has all been cleared up. Our hopes are revived.

Evidently the manager offered a deal he wasn't authorized to make, but given that the deal was offered, and in writing, and given the fact that all of you good people contributed to make Hazel's comfortable adjustable bed a reality--in effect, given that the world was watching--the company at last decided to do the deal almost as originally written up.

I am paying $13.05 more than the store manager stated, but believe me, after all this hassle it's well worth $13.10 or more, to have the stressful communications behind me.

Once upon a time, in a land of hikes and picnics, in a different life entirely, it seems, Hazel could go and go and go, and when she was tired, stretching out for a rest on the ground was fine and dandy. Now, not only is it impossible for her to go on a hike, but three different beds have all failed to provide a comfortable night's rest.

So, I'm really happy that in a mere 4 to 6 weeks, she's going to have the comfort of a mattress with adjustable firmness, for the endlessly-variable requirements of her tortured body. In my dreams, we were going to be able to go right out and buy that bed. Now, we're looking at expecting its delivery two to two-and-a-half months after the date I signed a purchase agreement with that flaky store manager.

No matter. Deferred is not the same as never. Sweet sleep is a dream deferred but not a dream completely canceled.  With gratitude to Melissa at Customer Support for finally making the deal happen, and with faith that the promised delivery date will be honored or even improved upon, and most importantly with thanks to all of you who helped make this happen at last, we wait patiently, knowing Hazel's sweet dreams are on their way.

We will keep you all posted, about the arrival of the bed, and how well Hazel sleeps on it. I know other people with ME and similar diseases will be interested to hear Hazel's rating, when she has at last had a few nights' sleep on her new bed.

Friday, February 5, 2016

Bad Bed Business! What a nightmare. What would you do?

I regret to report that the Sleep Number store hasn't honored their offer, on the bed. 

 Balloon added, Sleep Number logo registered trademark, artwork via wikimedia commons is a stipple engraving by J.P. Simon, 1810, after himself. Iconographic Collections 

Although we drew up the sale agreement on the 21st of January, and the store manager took my payment information, they have not put the payment through. It looks to me like he's trying to squirm out of the deal, because...

On the phone earlier that week, Mr Manager told me it would be $X including tax and delivery.
On the 21st he told me he wasn't supposed to make that particular offer, on that particular model.
He told me,
"My district manager said to go ahead and put it through and they would honor it because I already made that offer."
Then he wrote the sales ticket up for $X plus $45.39.
When I asked him about the increase he muttered something about not having figured tax correctly when he talked to me on the phone. I shrugged, figured it was still a good deal, and signed for the charge.
"It has to go to the Regional Office for approval." he told me. "But don't worry,  they'll approve it. The sale will go through in a couple of days."

I'm waiting...

So when the sale didn't go through after a week I phoned and asked, and he said, "Oh yeah, well, like I told you, it takes a few days. But they should approve it." 

Note how "they will approve it," changed to "they should." Not a good sign. But I decided to think positive, and be patient.

When the charge still had not gone through after another week, though, I phoned again. And again. And again!

He's not returning my calls A very bad sign. But it's so easy to dis the disabled.

So, what do I do? Report the bad bed business to the Better Business Bureau? Alert a local television station's Consumer Reports team? Get a tall male type of friend to go in there with me and look threatening? Get a whole group of friends to protest with signs outside the store?

Because telling this coldhearted furniture flunky failure of a Mr Manager that there's a young woman in a great deal of pain having trouble sleeping and waiting for that bed, and a whole lot of supporters who helped to buy her that bed are watching and waiting too, well, that doesn't seem to help.

Should I publish his name and phone number and ask you all to call him and request that the bed sale be finalized?

What would you do?

ETA: Patience and persistence paid off. See the update here: Sweet Dreams Deferred, Sweet Expectations Revived

Thursday, January 21, 2016

Sweet Dreams Becoming a Reality!

Great News!!! WHOO! 

Oops. Shhh, I'd better be quiet -- Hazel's asleep. It's past 3:00 pm as I write, and she's asleep in the afternoon because she couldn't sleep all night. Even when she's awake I have to be quiet: no TV or stereo or even loud conversation in this home. 

But right now I'm having a hard time maintaining silence. I want to jump up and down and holler, 

I ordered Hazel's bed today. 

And I want to shout out a huge,
to all of you who made this milestone possible.

Hazel will sleep like a -- wait, no, babies aren't such good sleepers, and logs aren't alive. Like a bee? Looks like they sleep a little crowded up, but they're happy. So let's say she'll sleep like a bee.
Bees Sleeping on a Seed Head by linsepatron via wikimedia commons:

Better sleep, and more comfort while awake-but-bedridden, will mean so much to Hazel's health. 

The bed will take four weeks to build and deliver, but thanks are due Right Now to all who contributed, and with a special thanks to my friend Kirsten who provided a copy of her RN license to get the medical discount, to Heidi whose online Jamberry party topped off the donations needed to get the bed, and to Heather who took me to the store and helped me think of all the right questions to ask the dealer. I feel confident that this is going to be a big comfort, quite literally.

(I'll post again in future to let you all know how the bed works out for her.)

The paperwork is now being processed. The dealer said he wasn't supposed to offer a Medical Discount on the least expensive model but the Sleep Number Powers that Be said that now that he did, they will honor that deal, but they have to take a couple of extra days to approve the sale and then they'll accept payment. I don't know. Some mysterious Sleep Number hierarchical concave has convened in their conical caps and will give the bed the nod.

So! Anyhow? Wow. We all worked so hard together to make this happen. Since I can't shout out loud, I might just have a quiet cry of happiness. *snuffle* you're all so good *sniffle*

I look forward to future posts of triumph, to announce progress toward a Service Dog, a power wheelchair and the van with a wheelchair lift to haul it, and oxygen compression equipment. We are making real progress to make Hazel's life bearable.

And I look forward to posting a picture of the New Bed. What a big moment that will be! But for now, I'll post a pic of Hazel Happy. Here's a thumbs up to thank you for helping!

Sunday, January 17, 2016

What's the Difference Between Hazel and Kim Kardashian?

There's very good news coming very soon and I'm just itching to post it, but I have to wait a tiny while longer. So meanwhile I offer this amusing little comparison.

This only hurts a little.

Hazel and Kim both might wear sunglasses, but Hazel wears them indoors to protect her sensitive eyes from the slightest light, while Kim wears them for some kind of pseudo-celebrity reason.

And Hazel and Kim both get out, but Hazel gets out maybe once a month for a visit to a doctor or dentist, while Kim gets out everywhere, all over the covers of the tabloids.

Finally, when Hazel stretches out a slender arm, she's getting blood drawn. Kim is seen in a similar situation but that's not a phlebotomy clinic. That's a salon, and she's getting her nails done.

A little good news I can share for now: Fundraisers are happening to help Hazel heal, and hey, you can help Hazel by getting your nails done, at home, for a lot less money, and a lot more kindly toward the environment, than what Kim's salon does.

Shop for Jamberry Nail Care products at Pajamaberry and all profits will help Heal Hazel. Plus we have these special Exclusive Pajamaberry Nail Wrap Designs available to Heal Hazel supporters, only.

$2 from each sale of ME Butterly Release is donated to ME research. All other profits go to Heal Hazel.

$2 from each sale of ME Triangles is donated to ME research. All other profits go to Heal Hazel.

$2 from each sale of Slice of Lime is donated to Lyme Disease research. All other profits go to Heal Hazel. 

To get these wraps, buy a $25 Gift Card and then email with your gift card's Code Number and tell me which style you would like, and your address to send it to. Easy Peasy and you'll get a whole lot of gratitude along with your stylish, nontoxic, biodegradable, long-lasting and affordable wraps. Each sheet of wraps does two manicures, two pedicures, and eight accent nails! For $25! I bet Kim Kardashian is paying a whole lot more for her stinky toxic polish.

To host an online Jamberry party to win products or to benefit Hazel or to raise funds for your own special cause, click "HOST A PARTY" at this link.

If you want custom designed nail wraps for your own cause, business or whatever, please email and we'll start the design work right away!

Note to Kim K: even you can switch over to Jamberry and be doin those glammy nails up for a good cause. Shop now!

Or Donate! 

Tuesday, January 12, 2016

Busy Bees Helping Hazel

It's time for a progress report! I've been buzzing about like a busy bee, working so many angles on so many fronts. Bees, dog, bed, van, power chair,'ve helped save our girl's life, and we're going to get our girl a life worth living.

First and foremost, heartfelt thanks to all who have helped over the last couple of months, including Nicky, George, the Elves, Heather, Karen, Ginny, Barbara, Sally, Neil, Robert, Glenys, and the customers of my Pajama Jamberry fundraising effort. I've conveyed your good wishes to Hazel, and just hearing of your support is so amazing and gratifying to her. It's truly moving, when she's been made to feel like human garbage, for her to find there are people out there who care about her.

You can make your nails pretty and be helping Hazel, you can even help just by "liking" my Pajamaberry Facebook Page, and you can help Hazel while helping ME Research or helping save bees. Yes, bees! Curious? Read on...

Hazel has horrible nightmares due to PTSD. When she has a happy dream, though, she dreams of bees! And it has long been her daydream to keep bees. So, for a little over a year, I've been attending meetings of the Sonoma County Beekeepers' Association whenever I could, and I've learned a lot about bees, but maybe the most motivating thing I've learned, is what a great organization it is.

Speakers from all over the country address the monthly meetings and applaud the SCBA as a model of bee activism, while between those meetings there are smaller "cluster" meetings, booths and displays at community events, visits to schools and other groups: a constant education effort not only about beekeeping, but about bees themselves, and how we can help them (and the planet) survive.

Bee Dazzling nontoxic biodegradable nail wrap raises funds to help bees and Hazel.

So it's my pleasure to assist their efforts, while helping Hazel too, by offering this exclusive "Bee Dazzling" nail wrap. For each sheet sold, I donate $2 to the Sonoma County Beekeepers Association. There are other beekeeping groups of course, in other places, but none does more in the way of education, outreach, and cooperation. I'm proud to support them as a member, a volunteer and a fundraiser.

I've also got special wraps to raise awareness and funding for Myalgic Encephalomyelitis research. Check them out at the Pajamaberry Facebook page!

Bees are nice to have around, and their presence will probably prove therapeutic to Hazel, but there's another animal on her horizon: her service dog. In talking with a trainer, I learned so many more ways her dog will be able to help our girl. Not only will the dog be trained to wake her from nightmares and fend off panic attacks, but it can pull her, carry for her, call 911 for her, steady her when she's dizzy and help her up off a bed, chair, or floor.

What breed or mutt will win the opportunity to help Hazel? We're so eager to find out!

Once we are able to make an initial payment to the trainer, she'll get to work identifying the right dog for Hazel - something large enough to lean on, something calm and steady and very devoted, and of course something smart. Then the trainer will put the dog through a rigorous two weeks' testing before it's cleared to start learning its job. I'm so excited to be embarking on this! Obtaining and training a dog will take time, energy, and of course money, but is going to make such a difference in the life of a seriously threatened young woman. And Hazel is excited, too! For her, wild excitement shows up as a soft little smile, is all, but I can tell you that soft smile shines when we talk about the dog. This dog will be doing so much to help Hazel at home, and, eventually, out and about.

Another big project continues to be the bed project. We have tried three different freebie beds and still, Hazel wakes in tears of pain, when she has been able to sleep at all. It's time we got this patient a comfortable bed! So, having looked into various adjustable beds, we've decided she'll try the Sleep Number basic model. I'm working the angles to get her every discount on the most affordable deal they can strike, and we are within striking distance. So dream a little dream with me: Hazel waking refreshed, rested, and in just that nice little bit less pain. And yeah, me not getting woken up at all hours to attend to her in her miserable insomnia. If you're going to have a life, you have got to get some sleep.
Dream a dream of comfort...visualize a night of sleep. 

Mobility plans are going to be a bit more of a stretch, to bring into reality. Hazel's doctor is writing a recommendation for a power wheel chair, as well as officially recommending the dog, and oxygen therapy. Maybe you can see what's coming next? Yes, we will definitely need a way to transport a power wheel chair, as well as a dog, and oxygen tanks!

At 22, when other people are at university or launching their careers, not to mention going to concerts, traveling, playing at the beach with friends, dancing and falling in love, and generally reveling in the early years of their adult lives, Hazel is stuck living in three rooms, constantly attended by her mom. When she does get out, it's only as far as the doctor's office. And when she goes to the doctor's office it's torture, because our car's shocks are shot, so it rides rough, it's noisy, it leaks and the carpets have got moldy, and the heat and cooling don't work. Hazel is extra-sensitive to the noise and the jolts and the cold or heat, so riding anywhere in that car is torture. 

Add to that, the difficulty for me or our helper, of wedging a collapsible wheelchair into and out of the car. Something has got to give! Sadly, what gave, last week, was my helper's back. My own back nearly breaks on those trips to her clinic in San Francisco when I have to load and unload the chair and push it up and down hills and into and out of narrow elevators and halls. We just can't do this anymore. We've tried to make it a while longer with that 28-year-old, too-small, too-broken car but we need a break, and not in the spine. We need a van with a wheelchair lift, for the power chair we're going to get. 

Wheel-chair wheels, wedged halfway into the ancient sedan. 

So far, no progress on the quest for wheels, but we will continue to work all the angles, seeking a charity or disabled services organization that can help.

So, you can see, we have our projects piled up for us, but we've made some progress to report, and we're putting every bit of help we can get, to the very best use. Thank you all for your help and caring in the past year, and we share with you all the highest hopes for a better life in the new year. Now, Hazel is waiting for me to bring her some water so I'm gonna post this quick... sorry for any typos... gotta buzz!