Sunday, December 13, 2015

Hoping for a Merry Little Respite

...before Myalgic Encephalomyelitis and violent abuse.
Hazel as a happy and healthy baby...
Hello friends and supporters, and thank you for checking in.

It’s two weeks since I posted my desperate appeal and I’m happy to say we have received some contributions, and I’ve gotten some Jamberry sales, plus I sold my violin. That support has been very helpful, not only in providing some of the supplements not covered by her Disability income, but also letting her know she’s got folks out there who care. So here’s an update.

UPDATE
Hazel is doing her best to stay with us. She still feels she’s fighting a body that just wants to give up. Her health is so bad, she really needs a respite, just for a rest -- just for an opportunity to rest before the next effort and the next crash. 

Happily, she has an appointment with her preferred primary care doctor tomorrow and we hope new blood tests may suggest some helpful treatment changes.  Unhappily,  she has not been able to get insurance approval for at-home blood draws, nor for continued care with her preferred doctor. The insurance company demands that she see an in-system doctor who is completely unsupportive. We’re working on appealing this through official channels but the very thought of the health care debacle has been enough to trigger a panic attack in this very vulnerable patient who just needs to get her medical care from the MD she trusts.

This ongoing bureaucratic nightmare in healthcare administration has caused much-needed specialist care to be delayed, including not only the home phlebotomy but also referrals to an ENT and a dermatologist. Hazel is also overdue to see the optometrist and the dentist, so it’s important that we get her baseline health up so she can make it to all of these additional appointments.

And of course, every appointment, including the one scheduled for tomorrow, is a strain on both our systems, likely to bring on a major crash for both of us afterwards. 

On a very hopeful note, however, we’ve found an excellent therapist who is able to visit Hazel in-home and work with her on trauma and PTSD.  Along with the knowledge that there are people out there who really care, that connection with a good therapist is already making a huge difference. So we want to thank that wonderful therapist, and all those who have contributed or made purchases. You’re helping keep a bright, caring, and sadly very vulnerable young woman alive.

Here's how you can help raise funds for her health care needs that are not covered by disability and medicaid...

MANDOLINS FOR SALE
Trinity College Octave Mandolin $800 or best offer;
Kentucky Mandolin $600 or best offer.

To purchase one of these mandolins, please contact me with your offer at creekfeet@gmail.com or just send the asking price in the caption above via paypal and let me know which one you want, and where you need it shipped.  The purchaser of the violin received it in perfect condition despite a USPS delay, and I will of course pack carefully and insure your parcel for the purchase price.


JAMBERRY NAIL CARE


Why nail care? Hazel doesn’t even do her nails. I do mine, but they are rarely seen in person as I don’t get out much. But they’re a fun way for me to keep my spirits up and I sell them to support Hazel's health care needs and also to support a shift from toxic manicures to nontoxic and biodegradable nail care, for your health and the planet’s. Additionally, I am hoping to get these products out to people of whatever gender who may feel uncomfortable seeking professional salon nail care but who want the lovely lustre of a beautiful manicure.  Finally, I know that many home-bound people like myself and Hazel find it difficult or impossible to get any sort of beauty care, and I know this is a nice way we can pamper ourselves a little. So please enjoy this amazing nail care, at https://pajamaberry.jamberry.com/us/en/ 

DONATIONS
And of course, we will be very grateful if you are able to simply...
Thank you! And have merry midwinter holidays, we hope in good health, enjoying whatever you celebrate with the people you love. 

Saturday, November 28, 2015

Hazel doesn't want to die. Can you help her live?

"I can feel my body giving up, and I don't want to die." - Hazel, this morning.

Hazel getting blood drawn back when she was well enough to go to the lab.*


More pain than a body can hold, more pain than a psyche can endure, and still if only the pain could be reduced by even a fraction, how she wants to hold on.

How she hopes you can give her hope!

A little over a year ago in desperation we created this blog and begged for help so that Hazel could get the dental care she needed. People helped, donated generously, and we are so grateful. She had oral surgery and that was hard on her body but she recovered, only to find that the trauma released memories of brutal abuse in her very early childhood.

Background: before we ever begged we exhausted every option. Begging was a last resort. It helped and we thanked all the people who donated but we really don't want to have to beg again.

Present situation: yeah, here we are begging again and we freaking hate it. Once again with every avenue exhausted, I'm desperate to find a way to help Hazel live on. So please buy, give, or lend.

Future fears: She's now so exhausted by the ways the trauma memories have induced new trauma. She's exhausted by the PTSD and panic attacks, She's tortured with new levels of pain by the resulting flares of Myalgic Encephalomyelitis symptoms  (she already had severe ME and this is wearing her down further, as ME worsens from any exertion, physical, mental or emotional). The future she fears is the inability to endure the pain any longer.

ME patients die of heart failure, neurological damage, rare cancers, and suicide.

Suicide.

We're so close. While I have had ME for over 8 years since I was in my 40s, I am gaining health, and I have hope of doing even better, having even fewer unbearably bad days. Meanwhile, Hazel's sibling had post-viral fatigue syndrome starting over 8 years ago for a couple of years but got well enough to be working through university and doing brilliantly academically in spite of the necessity of working and never being able to afford a visit home or even a summer off, you see, we have our difficulties, but we have hope. Hazel is losing hope.

But Hazel has had ME for over 8 years that began when she was just barely a teen. All of her teen years, and into her twenties, she has been tormented by increasing pain and isolation. She wakes in an uncomfortable bed and cries because nothing will relieve the pain. She wakes screaming from nightmares triggered by PTSD. She wakes and cancels yet another doctor appointment because she's too ill to go anywhere - to sick even to see a doctor.

So the future fear is suicide and we don't know how far we can hold it off.

But there is hope. So far, she has kept hanging on so bravely to hope.

Future hopes? New research is increasing understanding of ME. A new psychotherapist we've contacted may be able to make housecalls. With a new bed maybe the pain on waking would be less. With a new van, a new used van would do, maybe we could get her to the doctor appointments she needs, without so much pain. (Currently she's driven to doctor appointments in a 1980's sedan, her wheelchair wedged into the back seats, and she rides in horrible pain with each jolt, shivering in winter and sweltering in summer, because the shocks, heater and AC are all shot.)

So that's what I'm looking to get for Hazel: a comfortable van that will carry her and her wheelchair, a comfortable bed with adjustable firmness, and also the supplements she's supposed to be taking but can't afford. She would really like to live long enough to maybe have a chance at getting well.

I'm Hazel's mom. I'm the sole person able to do anything for her at all and there's so little I can do, there are days I'm afraid to go downstairs for fear when I go back upstairs I'll find her gone. We are both disabled and living on a fixed, below-poverty-level income. Hazel's sibling is working part-time while a full-time student and it's painful enough to me that I can't help provide that education. And that's all the immediate family. Extended family are worn out by our needs. And doesn't she have a father? Am I an immoral single mom who deserves the hell we're living in? Well, I was married. Hazel's dad was a monster and is now thankfully out of the picture, and didn't contribute financially anyhow.The life she's got now isn't enough to keep Hazel going, and the few comforts and necessities that might help, are out of reach.

So we're kinda stuck. She can't live and she can't die.  Probably some trolls will show up saying we should both go ahead and commit suicide, that's okay, I wish them all the karma they deserve, andt I am hoping there are some good people out there who will help Hazel hold onto life long enough to be here for the cure.

So, good people, how can you help?  1) Support a business. 2) Donate. 3) Lend

1) Though disabled I'm trying to establish a small business from home via Jamberry nails. I've only been at it for a few weeks, but I've made almost as much as I've spent and I'm willing to put in all the effort I can though it costs me health.  So you can help by buying Jamberry nail care products here: https://pajamaberry.jamberry.com/us/en/ If you don't want any nail care products, maybe you can buy some as a gift for someone else. If you don't want to give them as a gift, you can buy a gift card and make it out to me, and I will use it to produce custom nail wraps for ME awareness and send them to other patients and advocates.
Yes, those are my own nails, in Jamberry nontoxic, biodegradable nail wraps. 


2) Give. I would prefer to earn. I don't want to beg. But I can't work a normal job and it seems poetry doesn't pay, what little poetry I can squeeze between the efforts and the exhaustion, and the Jamberry business isn't building quickly enough to save Hazel's life, so I will beg if I have to. Please help her. You can donate, and we will gratefully accept the gift and use it to see to her needs, to save her life, and thank you, publicly or privately, anonymously and invisibly or by name from the rooftops.



3) Lend us money. Any amount you are able to lend, with no interest and no due date, I can accept, and I will do everything I can to earn the money to repay you someday. Being disabled and not knowing if I will ever be well enough to work or lucky enough to earn despite the illness, that's the best I can promise.

4) Buy these pretty babies and give them a good new home! Make them sing again. I've been too sick to play in a long time.  You don't play but you want to help? Buy them and donate them to a poor musician or a music school! So much win in all quarters!
Trinity College Octave Mandolin $800 obo
Kentucky Mandolin $600 obo
Santini Violin $200 obo   The violin sold - thanks!!

I want a different life. I want a different life for Hazel. We have what we have, she needs what she needs, there are no charities that can help us, so here we are, letting go of pride because we want to hold onto life.

*re: photo caption: Hazel is currently too ill to go to the lab and get blood drawn, and I have literally banged my head against the wall in frustration over the two months' fruitless efforts I have put into trying to get home blood draws for her.