Friday, September 2, 2016

A new mascot for M.E.

The M.E. community has been stirred into unusual activity for spoonies, by the recent research by the Naviauxs, Gordon, et al, showing the peculiar metabolic profile of M.E. patients.

"Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” said Naviaux. “And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability....This work opens a fresh path to both understanding the biology of CFS and, more importantly to patients, a robust, rational way to develop new therapeutics for a disease sorely in need of them.” -quotation from UCSD News

This metabolic condition's getting described as being like hibernation, so a whole lot of cartoon bears have been cropping up in MEmes. It's time to correct that picture, and give some exposure to our real nearest metabolic cousin, the dauer worm, Caenorhabditis elegans. Let us (gently) embrace our new mascot, not a bear, but a lovely little worm who even comes, as seen in its wikipedia photo, already wearing our awareness color. 

Thanks to the ME community online for input into the development of this graphic. - Creek

Sunday, August 28, 2016

ME Patient / ME Parent / ME Dog

"Dream Dog" collage by Creek, using EllaServiceDog photo by MarkMathis on wikimedia commons. 
Yep, I'm both a patient with M.E., and a parent of people with M.E.  I get asked that a lot - which am I , or, yikes, am I both? Yes, I am both.

And how is a dog going to help? Read on.

It's hard to be a patient with M.E.. I think it's maybe a little bit harder to be a parent of someone with M.E.. Hard to watch your child suffer and have no cure to offer. Hard to act as patient advocate and explain to doctors and dentists, schools and the world, about how your kid has an illness they either never heard of, or don't believe in, or are completely misinformed about. 

Few people are completely informed.

And if a lot of people think an M.E. patient is a hypochondriac, probably just as many people think an M.E. parent is some sort of Munchausen's monster, thinking their child ill. Like that doctor way back when: 

Me: Well, we finally got the disability paperwork for my daughter approved. 
Doctor: Disability? Why would you want to pin a label like that on a teenager?

Said teenager could not attend school, pursue hobbies, or even hang out with quiet friends. The kid was disabled. The kid had already been disabled for a couple years. The kid was relieved that there was at last official recognition of the fact! Yet that doctor saw it as something I did to my kid, labeling. Because like most doctors, he was completely misinformed about the illness and didn't understand the level of debility it can cause. And not knowing me or my kid, he thought that one of us was inventing the whole thing.

That's hard for a kid to bear, when the kid is suffering not only from pain and exhaustion but from the loss of all those activities, the loss of a normal life. 

It's hard for a parent to bear, too, when we've seen our children dwindling away, first suddenly and then month after month, sick and sicker, and trying so hard to stay active, and finally giving up, and maybe if we're lucky finally, after making themselves sicker still with the effort to be well, finally being told they must maximize the little bit of energy they have by "pacing," conserving, not pushing. 

It's also hard for a parent to have the care of a sick child. Any parent knows how hard it is even when the kids merely have flu or an ear infection, and hell, those things are over in two days to two weeks, and the kid is back to running around, playing, going to school, tearing through the house driving you crazy sometimes with how intensely active kids can be, and you're so grateful for that energy being back.

But with M.E., the sickness goes on and on, for months and years, with the night-wakings, and the vomit-clean-ups, and the barely-effective pain meds, the soothing teas, the sitting up nights and worrying and trying not to look worried. Every bath-time means a nervous vigil, knowing how dizzy the kid gets, in the tub. 

And it's not even anything like your kid having the flu but never getting well, because for one thing it's worse than flu - more like mononucleosis with a concussion on top - and for another, as it drags on and on, without relief, there's the growing suspicion that your kid will not be one of the lucky ones who gets well within six months, or three years, or after puberty ends. Your kid stays sick, and you research, and try various doctors and protocols, get tests, change treatments, and you have to wonder, if it gets no better, if gods forbid it gets worse, how will your child manage when you're gone?

Plus, being disabled by chronic illness does not mean getting to rest. Life is still full of the same challenges that face well people: things breaking and needing repair, money running out, events coming up good or bad and causing stress, having to move house, needing dental work, needing surgery. Coping with racism and homophobia. Trying to help fight global warming. It's all just a little bit more difficult, when everyone's sick all the time forever .

So yes, it's hard to have a kid with M.E., and yes, it's hard to have M.E., and oh, indeed, yes, it's amazingly hard to be the parent of a person with M.E., or two, plus have M.E. yourself. But you deal with what life throws at you, as best you can, and hope it gets no worse.

Crazy as it may sound to those who do understand the enormity of this disease, there are still times when I feel like a failure because I have not achieved more, never published that novel, never shopped around that screenplay, never traveled to all those places I dreamed of... but you know what?

I am freaking amazing. I have one of the nastiest diseases on the planet, my children are horribly chronically sick too, and yet we are alive. We are somehow surviving.


It helps that Hazel and I did get disability, and it helps that we now have caregivers, and it's going to help when we have a care-giving support dog for my severely-ill daughter. 

A couple of people have asked me how a service dog can help a person with M.E. Here's my answer:

What can a service dog do for a person with M.E.? It's not "just" being a companion. Sure, her dog can comfort her when she's in pain but is that a real service dog? Well, Hazel's dog will -
- Help her downstairs because she's weak and dizzy.
- Help her out of the bath and make sure she doesn't drown.
- Pull her wheelchair.
- Fetch and carry things for her.
- Go get help if she is vomiting or passing out.
Hazel also has PTSD so it's not "just" comfort but a potential life-saver that her dog will also -
- Guard and protect Hazel.
- Sense impending panic attacks and ward them off.
- Help her relax and get to sleep.
- Wake her from nightmares.
- Provide reassurance.
There have been nights I have fallen asleep on the hard floor beside Hazel's bed, while keeping vigil as she recovered from a panic attack and tried to get to sleep. I love Hazel. I'm her mom. I don't mind doing that if she needs me to. But you know what? I'm disabled by chronic disease, too, so I need my rest, and there are some things a dog can do better than I can.

So we've got a fundraiser going, to get the dog (that might be cheap if we can find a good candidate to adopt from a shelter), and to train the dog (more expensive than the cost of the dog itself but about half the price of most service dog training because we have an awesome trainer lined up who understands our limitations), and for the dog's food and vet bills.

If you can help, we'll be so grateful. Please share the link and contribute if you can to
Hazel's Helpful Hound. 

Having an ME dog will make it a whole lot easier for Hazel to bear being an ME patient and for me to bear being an ME patient and ME parent. Having an ME dog might even be part of the answer to that scary midnight question, how will my daughter manage, when I'm gone?

If you're a person with M.E. or a parent of a person with M.E., you might want to consider getting a support dog too, if you can.

As for us, Hazel's birthday is coming up in a couple of weeks. I'd love it if we could all give her the help and hope of a hound. 

Many thanks to those who have already contributed! 
Nicola, Cathy, Ray, Martha, Ted, Jack, Heather, Liz, Glenys, 6 Anonymouses, and K who has put up a $1000 matching fund if we can raise $1000 by the end of August. We are now over halfway there! 

Tuesday, April 26, 2016

Awareness Wrap-Up: Manicures for a Cause

Can't go out to a protest. Can't go out to a nail salon. Conquering the Can't's here. Let your fingers do the marching, right in your home. I created these Awareness nail wraps to help make us invisibly ill people visible, and to raise funds for research.

No Stink!

These custom Pajamaberry Jamberry wraps are nontoxic, biodegradable, scent-free, and easy-to-appy! They're perfect for Spoonies. And I've got a lot of other styles for you to check out, and am always adding more.


The wraps are not those tacky stickers from drug stores. These have a special adhesive that goes on with heat and comes off with coconut oil or non-acetone remover.

I sell the stock line of 300+ Jamberry catalog styles, too, on my Jamberry website.

Get in touch if you'd like to purchase any of these Awareness manicure wraps, or if you'd like me to design a custom wrap for your own cause or fundraiser event.They're a special order not available at the above website link or from any other Jamberry consultant. 

I'm on Facebook at Pajamajamberry
ME Serenity Triangles

GWI Yellow Ribbon Camo

Fibro - Lyme - ME Heathers Tartan
Fibro - Lyme - ME Heathers Tartan Close-Up

Gulf War Illness

Fibro Flight worn with Fibro Batik 

Slice of Lyme

ME Butterfly Release

ME Triangles & Fades