#HealingThroughNutrition: Turmeric!

Turmeric. The most under-utilized spice with medicinal qualities in our kitchen cabinet.

I just learned: Turmeric is fat soluble. There are also capsules sold that may be easier on the stomach

http://naturalsociety.com/turmeric-absorption-super-benefits-black-pepper/

Misconduct Complaint Filed With Utah Bar Against Attorney Lorie Fowlke

Filed by Adam Mackley 1:51pm Oct 31

UTAH STATE BAR

OFFICE OF PROFESSIONAL

ADAM MACKLEY (REVISED) COMPLAINT REGARDING 

PO Box 13296 MISCONDUCT OF

Ogden, Utah 84404 ATTORNEY “LORIE FOWLKE” 

(801) 389-8771 BAR #6875

Lorie Fowlke in her own Affidavit, shown as, Evidence “A”, to conceal, made misrepresentations to newly assigned Judge Mcdade, about what statements she made on May 16th 2013. Lorie Fowlke’s Affidavit Paragraph 4 she falsely stated; 

”On May 16, 2013 during oral argument in this case I indicated words to the effect that none of the parties had signed a declaration of paternity. At that time, to my knowledge, this was accurate.” 

On May 16th 2013, Lorie Fowlke actually stated:

“As a matter of fact, in 302 and 303, which is a voluntary declaration of paternity provision, it specifically says that father’s [Adam Mackley’s] voluntary declaration of paternity is void unless Mr. Barney, the presumed father, files a denial of paternity, which of course has not happened in this case.” 

Evidence “B”. 5/16/13 Tr. at p. 28,, ln 1-5. Evidence “B”.

The fact is “Mr. Barney” Voluntarily signed the Denial of Paternity and did it with out my knowledge. Evidence “C” Also, July 2012 in court, the Voluntary Declaration of Paternity form, was handed to me in front of Lorie Fowlke, I filled out the sections; Name, Address, and Social Security Number, and then I handed it back to Adrienne, in front of Lorie Fowlke.

Statements have been continuously crafted to avoid, conceal and misrepresent the facts about this legal document, in doing so, constructively admitting to the knowledge of the Voluntary Declaration of Paternity, the Voluntary Denial of Paternity by Presumed Father and verifies there legal validity. 

Lorie Fowlke’s Affidavit Paragraph 7 she falsely stated;

“At no time did anyone involved in these two cases, including Adam Mackley, indicate to counsel that a Declaration of paternity had been executed.” 

This is false, because in court on May 16th 2013, I stated; 

“But I signed the VDP.” 

Following my statement Lorie Fowlke argued

“…[Adam Mackley’s] voluntary declaration of paternity is void unless Mr. Barney, the presumed father, files a denial of paternity, which of course has not happened in this case.”

Also On February 7th 2013. The Declaratory Judgment Case number 134400322 was, made the specific request;

“…requiring Adam Mackley to withdraw his declaration of paternity from the Utah Bureau of Vital Statistics.” Evidence “D”

On June 26, 2013, and again on August 22, 2013 Lorie Fowlke, in bad faith, filed proposed Order Granting Motion to Dismiss and Findings of Fact, Conclusions of Law, falsely indicating that the court ruled to dismiss my Case 114402136. Evidence “E”. The court did not rule on any motion to dismiss ever. And at the hearing on May 16, 2013, the trial court made a ruling on the declaratory Judgment. The court ordered Colton's attorney only, to prepare an order. 5/16/13 Tr. at p. 48.. In 9, 10. The court further stated, 

“That order then does not apply to case No. 114402136”. 5/16/13 Tr. at p. 48,, ln 17. 

Further the Motion to Dismiss was not before the court on May 16th 2013, because my case which held the motion, was stayed. On July 1st 2013, Lorie Fowlke persuaded court clerk Trina to transfer the Motion to Dismiss, from my case to the Declaratory Judgment Case and change the dates from February 4th 2013 to February 7th 2013. Evidence “F”.

Lorie Fowlke, will likely misrepresent the facts regarding this complaint, the much of the misconduct described, herein is newly before the (OPC), and all of it, is involving misrepresentations made to new Judge. Also the facts of the case is that Declaratory Judgment’s by design, can not be used legally to rescind a Voluntary Declaration of Paternity or Voluntary Denial of Paternity by Presumed Father, nor can it be used as res judicata to dismiss my paternity case, instead the Declaratory Judgment and courts ruling on May 16th 2013, only identifies that the correct presumed father, in fact, signed the Voluntary Denial of Paternity, legally validating my Voluntary Declaration of Paternity to my Daughter.

Lorie Fowlke, has made countless misrepresentations directly to the court, causing hardships to my family, extensive unnecessary litigation, and gross miscarriage of justice, 

DATED the ____ day of October 2014. 

______________________________

Adam Mackley 

SUBSCRIBED AND SWORN to before me, a Notary Public, on this ______ day of October, 2014. 

_________________________________

NOTARY PUBLIC

View Post on Facebook · Edit Email Settings · Reply to this email to add a comment.

M.E.Sucks Donkey Balls

5th day of flare

Was going to travel today to next destination - leave date keeps changing. Will try next week

Zinger pain keeping me awake is perhaps a good sign that new trial meds are working but pain is so intense!

Neck and spine health are flared. 

BP and pulse are low. Nauseous. 

Indescribable fatigue. Even lying down it feels like I need to lie down.

Putting Music To My Anger

Leave it to my deep subconscious to pick a song, and I love to sing, to attach the feelings to from my struggles with my health due to the neuro immune illness MEcfs and my son Adam Mackley's struggle to get his legal paternity recognized in Utah to get my granddaughter Cadance back, that has notes I will NEVER be able to hit.  (The was the world's longest sentence EVER)

Starting mid December of 2013, while very ill and destroyed from a trip I made to Utah to help ensure Adam's case could be appealed, this randomly selected song would bring me from a deep sleep and wake me with an ever louder shout of 'Natalie'. I would be hearing 'Natalie' screamed in rage by Bruno Mars from the inside out. It wouldn't stop til I got up and badly sang some bars & danced a bit of a jig. I know it's a fanciful fantasy but I imagine myself to be dancing just as energetically and rhythmically as his backup and band. (Hey! It's the ME version of dancing so back up there;)

Here's the YouTube video of my favorite performance of Bruno Mars performing 'Natalie'.

http://youtu.be/tZJ_Q20bOv0

The truth is I would put my rage about my illness and the horrific neglect and treatment by the medical profession, governments and society I've received, to this music if I could! And my nog on advocacy for the rights of birth fathers. There's a selfish piece there: that's my granddaughter Cadance they stole. I want and long for her to get back to us before my illness takes me out. 

Putting rage to music. Awesome.

Oops! My format isn't right. Check back!
ME Audio To Natalie 9.14.m4a

So my technology challenges are keeping you from hearing my badly sung version I've retitled simple: M.E. It might be a gift actually:)

As I listened to the song today I keyed in on the ominous percussion and angry voice - so angry that when you sing about what you would do if you got your hands on the source of your anger the only way you can describe what you would do is sing 'Woooo' in a high pitch. And it's funny because that is the one hard note I CAN hit.

So I will keep listening to this song until it's work is done. And thank you Bruno Mars. 

PS. If this post seems familiar it's because I've written about this before. So now....it will either seem like I'm further along in my journey to express my anger in a healthy way or I will be seen as obsessed with Bruno Mars. We will see how this goes;)

Peace be with you and all that jazz!

Copyright (c) Chardale Irvine - 2014. All rights reserved. 

Grandmother With Terminal Illness Fears She May Never See GranddaughterAgain

Grandmother With Terminal Illness Fears She May Never See Granddaughter, Cadance, Again

A Florida grandmother, who is in endstage ME (Myalgicdt Encephelomyelitis), is on a pilgrimage back to the mountain states where she was raised and where she raised her own children. Chardale Irvine, or Grandma Char as she's known to her grandkids is back to see and connect with her 7 grandchildren and their parents. As of now she's seen all 6 boys, ages 11 weeks to age 13 but the visit with her granddaughter may not happen in time.

Her almost 3 year old granddaughter, Cadance Barney, has been withheld from Mrs Irvine's son, Adam Mackley, for over 18 months. She was taken at age 14 months with the support of a corrupt Utah Family Law Court system and Cadance's mother's family, who are apparently willing to invest any amount of money to make sure Cadance's biological father is not a part of her life.

This is what they weren't prepared for: Cadance's biological father, Adam Mackley, who has made monumental efforts to demonstrate that he has the full intention and desire to be in his daughter's life, will not stop fighting to be able to function as Cadance's father again. Why would a father go to such lengths? Because he doesn't want Cadance to ever think she's not loved or worth fighting for. Because in those 14 months with her a permanent bond formed, as it only can with fathers and their children.  That bond over these last 18 months represents an open and deep wound that can't be healed for him until he gets his daughter back. And Mrs Irvine has tried to support him in every way she can though her progressing illness has severely impeded that. 

The truth is Adam has had legal problems but in America even people in prison are allowed visitation with their children. This is largely because studies have shown that when children are able to have a relationship with their biological father, regardless of the father's circumstances, it helps the child immensely. Direct results show male children grow up with fewer legal challenges and female children have a much lower percentage of promiscuity and better self-esteem if they have access to their father.

Cadance was born with significant birth defects in her hips and legs. She had her left foot amputated by doctors at Shriners Hospital in Salt Lake City at 10 months to prepare to receive a prosthesis. Adam did the first three days of her post op care at his home and brought her to Shriners for her post op follow up. 

Cadance had just received her prosthesis one week prior to visitation being denied and was cruising along furniture immediately. She took her first steps two weeks after the last time we saw her.

With little medical acknowledgement of her own illness until very recently, Mrs. Irvine's health has significantly deteriorated. As the illness continues to cause irreversible brain damage, she fears Cadance may never know who her Grandma Char is and this walkabout to bond with her grandkids before it is too late holds an open and gaping void with no way, thus far, to see Cadance.

What would Grandma Char want Cadance to know? That she is loved beyond measure by a whole family, some of whom she has met and many more that she hasn't yet met. That her dad and her grandma will not give up in their efforts to bring her back to this family. That Cadance comes from a family of courageous, adventurous and creative travelers, whose people are beautiful, strong, creative and intelligent.

This little girl, who looks just like her dad, who looks just like his mom (and twin brother), who looks just like her dad, has a place set at our table and in our hearts. This family wants her to know that it doesn't matter how long we are kept away or how far away we are in miles, she is a part of our family.

But Grandma Char worries. Will the corrupt Utah family law system and efforts to illegally sever emotional bonds hurt Cadance? Has it already hurt her?She fears that if Cadance has even 1/100th of the pain her dad and grandma have due to this separation, then it is too much. This little girl with all of her physical challenges will only benefit from more people to inspire her, encourage her and help her find her way.

So Grandma Char continues her pilgrimage to see family in the mountain states with the sacred hope that a miracle will happen for her to see and bond some more with Cadance.

Thomas Patton: Still the most horrific UT court officer

I won't post a lot. A lot has been said on this blog about how Mr.Patton single-handedly staged the kidnapping of my granddaughter Cadance Belle Barney and then his actions were pencil whipped by a judge that sent the cases right into State Appeals court, which is where it is now. It is awesome that my son Adam Mackley has been able to keep the cases afloat against all odds but daunting in that he still has no lawyer defending him. But he fights on until the last possible breath and I have his back 100%.

What this post is about is some pondering that I have been doing. Why is my Thomas Patton post my most heavily viewed post on my blog? Why is his name the most common search word for hits and why, mostly why, do I keep getting story after story how he's ruined family's lives by his nonsensical and cruel decisions? How is this man still allowed to oversee family law cases?

Take note Mr Patton: I miss all of my grandchildren who I see little of due to health but the ache that is caused from that beautiful little girl taken from her dad, her brother, her great aunt, her cousins, her great grandpa, will not heal until we get her back.

And that you are DAILY allowed to AGAIN and AGAIN wreak that brutal havoc on the lives of children is CRIMINAL.

And to all you judges and attorneys that participated in the extortion ring your actions are not only criminal but lazy AND abusive. Your ethics are atrocious.

For others facing Mr Patton or those who have please message me a gypsyabf @ gmail dot com

Maybe as a common voice our kids have a chance.

Btw it is possible to leave an anonymous comment on my blog and if you favorite me you'll get an update with new posts. I'm not a robo poster so you went get tons of notifications from me.

God/Spirit/Universe bless you all and an extra blessing to those stolen children and their grieving hearts and grieving parents.

#4Cadence #NavyVetDad @AdamMackleyUT #EqualParenting #CivilrightofUnmarriedmen #HoldingThomasPattomAccountable

#4Cadance THIS is what Thomas Patton, Judge Davis & Judge McDade stole from this little girl.

How To Make A Dolphin Jump Using Your Vagina

5/31/14 I woke up angry and resentful that I awoke in pain AGAIN. Nearly 20 years of this - some days I struggle to find a reason to get up but usually something very basic drives me from bed. I need to pee. I have to admit there have been days I have considered just peeing the bed but I'm not so far gone to think through the consequences of that. Sometimes I do wait too long to get up and that results in a change of clothes. There are times when I wake up with the urge a little late and the insipid pain from the exertion of lying down to standing up results in a stress relief loss of urine (that's the medical term for it). During these last two years of major injuries and surgeries I have come to almost expect this to happen and when it doesn't I do kind of a pee pee happy dance in my head.

TMI Warning: Gross old lady info to follow-
Last year I underwent testing for pelvic floor prolapse. For those who don't know it is common for women who have previously given birth who are in or beyond menopause to start having stuff in our abdomens start trying to fall out. Bladder prolapse, uterine prolapse, rectal prolapse or if they are all trying to fall out at the same time they call it pelvic floor prolapse.

The reason this happens is that without estrogen our tissues and tendons thin out and become weaker. The stresses of previous pregnancies are then pronounced. And stuff tries to fall out. This can result in pain during sex, difficulty urinating or completely emptying the bladder and difficulty in bearing down during bowel movements. Or so I read.

Luckily for me I hadn't prolapsed but my bladder is oddly shaped and I have an old tear on my rectum muscle. I didn't know this - and I blame my high school Physiology teach Mr. Jaggi for this (what an opportunity lost to make a whole generation of Lyman, WY students giggle, cringe and squirm more than you did) - there is a large and substantial muscle surrounding the length of the rectum. Mine is about 2 inches wide all the way around and up and down, except for that tear which is a blank and missing section on the left side near the top about the size of my thumb.

It's a very old injury so the doctor didn't think repairing at this point would help much but seeing it there it made a lot of my lower back problems make sense and 'esplained' some things I'd been wondering about. Out loud at times to doctors but always dismissed. I had noticed a pattern of exacerbated pain about 12 hours prior to needing to poo. If I was trying to do something physical during that time it would result in a major event of pain and recovery. If not the pain would scream in and then leave a little later. It would be gone by the time the need to poo came so it was sort of a vague observation and connection.

So since I wasn't prolapsing but had the obvious weakness from the tear I began vajajay training. Funny thing too because I had always secretly taken great pride in how well trained and worked out my vajajay was but there I was with electrodes up in there with me trying to make the dolphin on the computer screen jump out of the water.

I have to admit that was one lazy ass, limp dolphin with my vajajay in the driver's seat. I live in Florida right now and I see dolphins a lot and my computer screen dolphin would not even be ALLOWED amongst those dolphins except maybe as one to laugh at.




I went through the whole training and never made him?/her? jump. It would just barely surface so at least it got to breathe. I left after six weeks feeling let down by my vajajay's lackluster show and then for the next six weeks angry because things seemed to be WORSE than before vajajay training. I even called and complained about this (ya wouldn't you have loved to be listening to THAT conversation?) and the vajajay training tech assured me that was common while my body figured out what to do with all the newly sparked nerve signal pathways. Because, oh yes! I remembered the doctor had told me my success/failure would depend on how and if nerve signaling could be improved.

And then!!! Six weeks later everything clicked and started working together and better. I even went so far as to take my pee pee happy dance verbal by commenting about it to my husband and my sister
 and maybe some other people who REALLY could have done without hearing about it EVER.

Kind of like you right now. Reaching the end of this post and thinking, asking, beseeching - did I REALLY need to know all of that?

And in the words of my daughter Kaycee Lalalalala STOP!! Lalalalala.

Peace be with you and all that jazz!!

Copyright. 2014- Chardale Irvine. All rights reserved. 

I Just Need To Lie Down Constant Mantra

Amazing descriptions and explanations and/or theories have emerged onto the ME/CFS landscape in this last year.  I am mostly jumping for joy and feeling relief and hope but sometimes, i do admit, I sit in anger and resentment that it took this long.  But that will be my own journey to grieve and figure out.

The one description/reason for the 18 year old mantra playing constantly in my head has been explained and thus validated.  I called it fatigue, never feeling comfortable with describing it as a message or mantra for fear it would push my mental illness diagnosis even further into an even more severe diagnosis.

"I just need to lie down" is a message that the vagus nerve sends the brain when we have an infection, virus or even some parasites.  It says "Hey brain we got something serious going on down here so our girl is going to have to lie down and rest so we have time and extra available energy to send in the immune system to fight it off.

So all these years of questioning myself, "Maybe I am lazy", maybe I am just chronically depressed because I couldn't get two steps away from the mantra, now have been put to bed.

That is a sick behavior drivn by the brain and immune system to get optimal conditions for repair.  Did all that heeding to the message actually help me? I'm not sure.  I just know it feels good to have a solid phsysiological explanation for that key component of my illness - maybe the most disabling feature of all.

So now, until a treatment or cure is developed for my illness and can be honoring and thanking my severely and unexlainably compomised non HIV immune system for continuing to try to work.  I commit to it and my sister Sherone that I will be working to honor it and not giving up hope.

It is called "neuropathological sick behavior' caused by an acute or subacute infection of the brain, spinal column or vagus nerve. Here is a link to a more comprehensive description: 

http://www.ncbi.nlm.nih.gov/m/pubmed/12615196/

And here's an 8 min video clip of an attempt to do a day but ended up lying down again: 

Peace be with you and all that jazz!

Copyright 2013 (c) Chardale Irvine. All rights reserved.

CDC Stalling and Diverting Funds for ME/CFS Research

Dr Vincent Rocanilla is a colleague of Dr Ian Lipkin at Columbia University.

They have research ready to promote and no funding. They are crowdfunding to hasten accessibility to patients and doctors (and the evil pharma - keep an eye on how this plays out but first watch the movies: Dallas Buyers Club and Constant Gardner.

Please support Dr Lipken's research and send a strong message to politicians and pharma that we CAN go around them. Your financial support does that. Here's the link: 

http://www.microbediscovery.org/

Even as all this happens I fight to find a doctor who knows anything about my illness. The only doctor in Florida, Dr Nancy Klimas, at Nova Southeastern, doesn't accept my federal Blue Criss insurance, has a 200 person wait list And will cost me out of pocket up front between $1800 and $300 cold, hard cash that I don't have. Double that for my husband who also has the illness - onset 3 yrs ago.

Verified test results:

Low IGg immune system factor

High blood titers on all herpes viruses except one

Confirmed diagnosis of Disseminated Herpes Simplex 1 in my lungs from a bronchoscope 

4 sleep studies over 8 years that show zero stage 3 and 4 sleep - so no cell repair hormone HGH

Confirmed irregular heartbeat

Severe multiple chemical sensitivity

I have 100% of the recognized symptoms, the best insurance money can buy and yet I still don't have an officially recognized illness.

I have all this now and still have no diagnosis that is recognized by my doctors or insurance. Do you know in the US it is illegal to name an illness that doesn't have a drug to treat it?! Is that backwards?!

Bruno Irvine Hand Off To Bruno Mars via the song "Natalie"

From 2 weeks after my adorable, little 14 year old dog Bruno passed I have awakened every morning to the song 'Natalie' by Bruno Mars as my ear worm. Long before I knew the lyrics I would surface awake with NATALEEE screaming me awake. This is weird too because the ME/CFS coming awake period transition is usually this: "Holy Fuck I hurt. I'm too tired to wake up. What fuckin time is it cuz I feel like I haven't slept at all and that truck hit me again during the night." So having Bruno Mars singing 'Natalie' to accompany that - well let's just say it made it a lot easier to take. Here they are doing the live version which I can't get enough of.

I was only familiar with 3 of his songs and one performance at the Oscar's. But when I researched how this seemingly 'new' performer had skyrocketed to get in on the SuperBowl I found there was no skyrocket. This kid had been honing his craft since age 6 in Hawaii playing Elvis in his family's entertainment act.

And somehow this made it so that I could wake up every day and still think and say the name Bruno. The name that was as much a part of my life as breathing. No move made for 14 years without considering him. It was an intimate dance with a 100% committed tiny protector and healer. 

I don't want to minimize grief here at Bruno Mars' expense. His mother passed unexpectedly last year. She was just 3 years older than me and he is younger than my kids. I know how I felt when my mom passed and I had a lot more time with mine than he did and it was rough.

I think it makes his performances even more incredible to me. It's helped me immensely to see him giving back and really going all out in his performances. I've never been able to sing when I'm sad so it makes it even more amazing to me.

Truly I have old lady crushes on his whole brand when they do the little Natalie dance. One day I will be well enough to try to imitate that.

Here's a pic of the dudes at work...or is that play? I'm thinking play?

For now I spend several hours each morning humming or singing a hatcheted up rendition in my voice that can't come close to the notes or the body that hurts too much to do the moves.

Bruno dog I miss you beyond measure. The world seems less without you.

Bruno Mars I am SO sorry about the passing of your mom. That's one mountain of grief to set aside to perform. I hope it helps that you are truly making a positive influence out here. That effort means something. And the same goes for your bro and your sisters.  Your mama is proud of you guys.

Here's a video of my little dog Bruno playing with our cat Dave in our condo in Colorado prior to going on the road in the RV:

http://youtu.be/9LtlZEHNVf8

I miss our inter-species family but what an awesome ride it was. I will see you both on the Rainbow Bridge.

Peace be with you and all that jazz,,,,,

Chardale Irvine suffers from Myalgic Encephalomylitis commonly known as ME/CFS. She was struck down at the age of 35 with this illness which the US Government and Pharmaceuticals have minimized, trivialized and made a blatant move in 1990 to divert research funding, change case definitions from a physical illness to a psychosomatic mental illness and smear to ruin the reputations of any doctors or researchers who dared to pursue study or treatment.

To date it still is not recognized as a real illness, there are no specialists and treatment is not covered by insurance.

Please support Dr Ian Lipkin from Columbia University to promote his research so that treatment for ME/CFS can be mainstreamed. He is crowdfunding because there are no grants but he needs funds to promote it through trials. Every penny counts!!! 

http://www.microbediscovery.org/

If you wonder about the abuses that are imposed on people by pharma I suggest watching the movies 'Dallas Buyers Club' and 'Constant Gardner' in quick succession. You will be changed.

Thank you for your support.

Char

Of Seemingly Endless Grief - The Bruno Handoff

On December 7, 2013 my little dog Bruno passed on here in Florida while I was in Utah trying to help my son Adam find his feet again after the stress of having his daughter Cadence taken 10 months earlier. 

It was a difficult trip with a difficult goal that didn't play out quite the way we planned but in the end it got Adam back in play fighting the courts for his daughter.

I faced brutal criticism from my family while there and afterwards. Three people expressed their condolences. Otherwise there was silence. And the wash of guilt for not being there with Bruno in the end, after 14 years of his undying, hyperfocused attention and an energy field as big as a room. 

Bruno was a Yorkie-Pom-Hairless Chinese created. 

A Gypsy Girl: What Would I Say To Myself Age 1-5

Age 1:

Where was I? Orem, UT

Your mom and dad will always be sad that your brother Maury died of SIDS on March 6 at the age of 13 months when you were 6 weeks old. Hang on. With a bit of time they will be back on track. After you get your tonsils out next year you won't be sick nearly as much. You are tiny and frail now but you will grow to be strong and tall.

Age 2: 

Where was I? Provo, UT and Dutch John, UT (where my dad helped build the Flaming Gorge Dam)

See that little baby girl in the crib right there? She will be your closest and bestest friend forever and ever. You will save her from drowning when she's 3 and you will try to cut her leg off by throwing her in the river showing off for boys when she is in the 4th grade. When you're 53 she will still be your best friend and best ally. Her name is Sherone.

Age 3: 

Where was I: Not a clue

I got nothin' except get lots of rest because the next few years you're going to get yourself in lots of painful pickles.

Age 4: 

Where was I? Payson, UT 

Don't run in front of a bike while someone is riding. When they run you over it will hurt like hell even if your brother gets a whooping. Don't stand near anyone swinging a sickle (sling blade - is there a reason that's one of my favorite movies?) cutting weeds because it will leave a painful gash and big lifetime scar when they hit you in the leg even if your brother gets a whooping for hitting you. Sadly not every landlord will give you Lifesavers when he comes to collect the rent. You will not live in that spider infested house much longer. Your constant nosebleeds will soon stop. That roseola virus you have this year is coming back to haunt you at age 35 and on by setting the stage for you to get ME/CFS. You won't be a morning person ever again after this year. You'll also never 'have' to nap again.

Age 5:

Where was I? Linden, UT and Modesto, CA

If you melt the toes of your snow boots in the campfire trying to warm your feet you won't get new boots. Your brother will never trust you after the third strike of running the iron up his arm. Sherone will save you from your first whooping by getting blamed for exploding the lightbulbs from spitting on them.

You will never find another kid like Julie who likes to perpetually spin on the monkey bar as much as you do. There is not one other person in the world who will ever beat your 100 spins in a row record or sport that awesome callous on the back of your right knee like that.

That batmobile in Modesto was probably NOT the real batmobile. 

You will someday love and crave those dreadful avocados. 

Someday wearing that Autumn Leaf Girl costume that your mom made will be a fond memory.

Sorry to say it but this will be the funniest Christmas ever. 


My sister Sherone Taylor blogs about the beauty and basics of life at www.annapearlsattic.blogspot.com

Kim's Upset Tummy Remedy

Funny story here: our dog walker in New Smyrna Beach, Kim recommended this for our dog Bruno after he had a run in with a heart worm med that messed him up. He had diarrhea for too long. He hated this but Walt and I fell in love with it for desserts or snacks or...when our own tummies or guys are acting up. 

And it tastes yummy too!

1 cup plain yogurt with active cultures

3 cloves chopped garlic 

2 tablespoons coconut oil, grapeseed oil or olive oil

1 tsp real vanilla

Raw honey to taste

Add yogurt and vanilla to a large soup sized bowl.

Sauté the garlic in the oil over medium heat stirring til it just starts turning brown. Scoop garlic into yogurt mixture to cool it and stop it from cooking anymore. Stir well and add honey to taste. Serve immediately. 

Chardale's Golden Milk for Pain

I've seen these recipes floating around and they've always been made with coconut milk and I'm allergic to coconut so I never made it.  But today a front came through and I was hurting so I got desperate. My meds do nothing to touch the barometric pressure pain but this really seemed to help - with my own adaptations of course. If you aren't allergic to coconut I highly recommend using it because it has awesome healing qualities.

The great thing about this is that it tastes really good! Like dessert even!

Chardale's Golden Milk

1/4 c water

1/2 tsp turmeric

1/8 tsp black pepper

1/2 tsp cinnamon

1/2 tsp ground ginger
(You can increase the turmeric and ginger if your taste buds can handle it)

1 tsp coconut oil, grapeseed oil or olive oil

1 tsp vanilla

4 cups coconut milk, rice milk, protein powder plus water, goat milk - or regular dairy milk (run, run the other way)

Raw honey to taste

In saucepan heat water, turmeric, pepper, cinnamon and ginger over high heat to bring to a quick boil while stirring constantly. At boil turn to medium and keep stirring until it thickens. Remove from heat.

Pour 'milk' in a little at a time stirring constantly. Add oil, vanilla and honey to taste. Heat over low heat while stirring to get to drinking temp.

This is great for pain and inflammation and a great way to get medicinal herbs in the not so enthusiast naturalists and/or kids. 

Give this a try and then post a comment to let me know how/if it worked for you or what modifications you tried/use.

Thank you!

Gypsy Char

Chardale's Jungle Juice for Colds & Flu

In pint jar mix:

1 cup raw honey

3/4 cup apple cider vinegar

2 heaping tsp ground cinnamon

1/2 tsp ground ginger

1/2 tsp turmeric

1/8 tsp cayenne pepper - more if you can tolerate. 

1/4 tsp ground sage

Put lid on and shake til dissolved. Take 3-4 tablespoons or half a shot glass every 2 hrs.

Good for pain, inflammation, sinus issues. Be ready! It has a bite and gets a little gelatinous so shake it really well. Hubby Walt swears by this stuff. 

About Pain

Borrowed from a spoonie friend.

We Share The Same Sky

It's okay Char. The tears are good. Look up. We share the same sky - your tribe and God and you and I.

They are strong, amazing people and parents. God is with them just as with you. Trust. Let go.

Your path is very, very narrow now for awhile. It isn't the first time. It won't be the last either. Remember to feel the hand of Jesus on your elbow as you've felt so many times before. 

I know healing and repair seem irretrievable. Just keep praying. Stay in integrity. Never stop growing. It will come.

And those gold nuggets of connection - there are people out there doing that for your tribe too. Miracles happen every day for them too. 

Forgive yourself for your failings as a mom. They can't forgive you until you forgive yourself.

And being Grandma - it's complicated sometimes and much less defined. You are a traveler who was raised by travelers. Who raised some people who might not be. Or some who aren't yet. You haven't traveled without thought or purpose but it makes collecting people challenging. 

The illness- pain, fatigue, virus of the week, stigma that is M.E./CFS/Fibro - you carried the torch to the cure. You are almost there. 

Write that book: I Suck At Grief. I'm okay with it - I think I am anyway. I sucked at grief too. My undeveloped gifts made the feelings too much. Too hard. That's a conversation we will have on the other side. 

I love you beyond measure. 

Love, Mom

PS. Maury, Bruno, Chad and Jean say hi. Maury is a big strapping guy who looks a lot like your youngest sister. He's quite mischievous with that twinkle that you see in the Boys' eyes - always up to something. Chad is cool with Bentley's choice of seating. Jean thanks you for good intentions no matter what the result and just hopes you don't give up trying. 

PPS. I visit the Rainbow Bridge every day. Bruno is happy to finally have a vacation. He plays a lot with Hank the cow dog and Tito but Jersey kind of keeps them penned in the corner sometimes. Willie still steps on everyone but he's much lighter up here so it doesn't hurt and everybody laughs. 

Duke has really come out of his shell. Mimi is down the street digging in fresh trash every day. She's in heaven - literally:). Stetson has 43,212 leather gloves and 8 popped basketballs. Bruno sleeps on Stetson's back just like the old days and God lets him eat cat poop, but only once a week. Gizmo - he splits his time between me and this very nice Inuit man. (Yes there is snow in heaven but it's savagery stays on Earth). Sabrina is now the queen of everything. 

They all wait on the Rainbow Bridge for their special humans. Hippie thinks Bruno is hot and he is a horn dog - so ya, you know where that's going. Bart and Scotch play with Ron 's labs - they chase sheep all day and they get a good Army tent to chew up once a month. Dave gets a fresh roll of toilet paper to disembowel everyday. Gus - well he was older than all the cats in heaven EVER when he got here so he is the old, codgy sage. He asked to be on the opposite side of the bridge from Dave. Lexi is by my side constantly. She, Cinnamon and Angel are best buds. 

And the cockatiel wants nothing to do with you and has decided to cut all connections. He knows you understand;) He has recovered his tail feathers and has two working legs.  

Gratitude

I'm glad I was taught early that grandparents aren't a given or a right. I'm glad I had parents who made great efforts for me to know my grandparents as their years progressed. I'm glad I was taught to respect limitations but always be respectful about them. 

ME/CFIDS Scam of the day: Call BS on the lazy A$$ name callers.

I'm not buying it and I'm not buying into hearing that it is something people should feel okay saying LET ALONE think it. 

In the last year I have been called several brutal names by my family and also received inscrutable criticism at the hands of people I thought of as my support system. I have to say it has torn me up - just to the edge of still finding the will to keep plugging along in a life with too much pain and too little validation of that pain. Just at.The.Edge.

I have been called a chicken shit by my dad.

I have been told that my grandson deserves more than me because I'm not there to tickle his back or read him a story and then had access to him withheld 

I have been told I don't try hard enough to be a grandma and I should use my 'lucid' moments trying harder. 

I have been called a scammer by more than one person in my family, to my face and behind my back.

I have been called a drug seeker by medical providers with zero understanding of the complexities of my illnesses.

I have people who refuse to allow me to talk about my medical challenges so phone calls are few and far between because the one sided conversations never fully describe my current challenges.

I don't have HIV or Ebola virus. I have CFIDS/ME. I have had it for 18 years. It started on February 2, 1996. It struck me down at the age of 35 and destroyed my career, my health and my ability to care for my children. I am 53 years old now and the cause, treatment and cure are as far away as ever

When I became ill I worked full time and played on three recreational volleyball teams. I played pickup basketball at the park with the guys. I frequently took my kids on long hikes in the foothills of Boulder County. I was in awesome physical condition with an awesome life.

So if all the labels hold true I stopped my vivacious, passionate, healthy life to become a scammer. To make up day in and day out how much fatigue and pain i was experiencing. I quickly gained a lot of weight which gives people the perception i know nothing about how to stay fit or how to use healthy nutrition to fuel healthy living.And I've been scamming since then. Scamming to live at just the edge of poverty, having to leave my kids with their dad because I could no longer care for them. Scamming to acquire, at a minimum $3500 new medical debt per year even after the use of my top of the line government health insurance. I have sold 2 houses to relieve that in the past but there are no houses to sell now. And I keep accruing unavoidable and extensive medical debt each year. It's in the tens of thousands by now.

At the time I became ill there were no tests to indicate what the cause was but there are tests now. And strangely enough even with these ominous test results I am still considered a scammer by my family.

I somehow am able to conjure viral tests that show high titers across the board on subviruses that should be lower post infection. My immune system tests for chronic infection (IGg) is consistently low which means I can't fight long term subacute viruses or bacteria very well. I have a confirmed biopsy of herpes simplex 1 in my lungs which is called disseminated herpes and once it passes the brain/blood barrier it moves around to random weak spots and if it ends up in the brain it is usually fatal. It is very painful and extremely rare.My sleep studies have consistently shown for over 5 years that I get zero stage 3 and 4 sleep which are the stages when the body releases human growth hormone to repair tissues. I am frequently accosted by the virus of the week which takes me down for weeks. At altitude now my oxygen saturation bounces around so I have to wear oxygen which is apparently a free pass for anyone to comment about and ask how long I smoked. I didn't smoke. At.All. But apparently had I been a smoker it would mean that people would have a free pass to say the most rude and judgement comment possible.

I am such a scammer now that somehow I have figured out how to give my husband this same illness so that he too can feel ill every single day of his life with unrelenting pain, fatigue and immune system challenges so that he to can be the recipient of the horrific name calling. And these are from family. His family has been just as horrific as mine. 

Imagine stretching that into the community and medical field and being told for decades that you're not really sick and that it is a mental illness or you're making it up. That shit wears ya down

I have fought so hard for validation from my family because I thought with their help I could keep fighting until there was a breakthrough in the cause and or treatment. These people, my supposed support system, function as the antithesis of a support system and finally I realized by giving them access to my heart and feelings they are contributing to breaking down my reason to live and keep fighting.

I do have now medical validation that I am truly ill but it still isn't enough for this critical, self absorbed family who have forgotten or never knew that the road to grandma's house and heart goes two ways.

We are so graced right now to have medical support to help us bumble along with finding health but they and I know it may be too late. Too many years of medical neglect and outright misdiagnosis and the use of the wrong drugs have left permanent injury for me. There may be still hope for my husband since his diagnosis is fairly recent but his impairment seems even harsher than my own. I can't even describe the depth of grief I feel to see what the illness has robbed from him. It is gut wrenching and heartbreaking.

It's a relief finally to not need my family to validate my experience but the injury left behind from years of failure to act as a support system will be hard healed. I have so little expectation for their depth of character. How else could it be when my own dad calls me a chicken shit and then refuses to apologize? It seems a bad omen and my mom isn't alive anymore to insist he make amends.

I have progressed into the crazy, oddball and rarely seen grandma role. You know - the one with the pink stripe in her hair, who marches her chubby self right into the ocean in a two piece suit, who sings out loud at any given moment and the one with the penchant for finding cool and unique tshirts at the thrift stores? She is me. I am her.

I'm the one who has just a bit to give and it will never be enough or equitable. Our only hope is acceptance and I've little hope for that. It is unlikely we will get close relationships with the magical grand kids and this is such a point of pain but I will not have them used as ways to reward or punish me for my participation which is ALWAYS affected by the limitations of my illness and NEVER equitable. 

In the meantime, because we lack family support to do it for us, we are making arrangements for live in help because  we can't take care of ourselves alone anymore. We are starting to get help with meals and transportation but its been tough because we fall in the gap of being just a bit too young and making a little too much money. 

I am allowed to work still if I feel well enough but it has been over 5 years since I felt well enough to work. I am not sure it will ever come back.

I miss my family and the mountains with a deep and unrelenting pain but my lungs and psyche need clean ocean air around contemporary and advanced medical support. I'm not sure i will ever understand the ease with which these people in my tribe cast hurtful opinions and cast off any sense of obligation. I haven't decided if its a family illness or a cultural illness. Either way it has been devastatingly destructive. 

I am graced to have one sister who is my undying ally and advocate. She was that even prior to knowing the whole story but after a recent crisis intervention meeting she shook her head and just said 'Wow, I just had no idea how complex the issues you're dealing with are'. I had asked my husband's  brother  too because I wanted for him the same kind of advocacy that I have. I'm not sure it's there or sustainable but either way it meant the world that these two came to help us out of our crisis.

There is an army of us previously voiceless sufferers of ME/CFIDS who now with portable technology are rising somewhat metaphorically from our beds and demanding acknowledgement. And treatment and validation. With between 4 and 10 million in just the US the potential for revolutionary change is on the horizon. I hope it comes in time for me and if not at least for my husband and niece. At that leaping off point.

To Walt, Bree, Glenna and all of you warriors - this post is dedicated to you. And to my Sisterla Sherone - you rock.

Peace be with you and all that jazz....

PS. Don't forget to sign up and follow Jenn Brea who is making a documentary about ME called. 'Canary In A Coal Mine'. 

Barry Manilow Has Still Got It!

Flashback:  I'm 17 years old.  It is the summer of 1978.  I'm in between my junior and senior years of high school and I'm in Provo, Utah at Brigham Young University (BYU) Girls' Basketball Camp.


I was there with my friend Kathy Gillespie.  We stayed with my grandparents Bill and Pearl Griffiths in Orem.




That night I was up walking in my sleep, running basketball plays in the hallway outside of my Grandma's bedroom....that dark, long night in Orem, Utah....a 34 year old Barry Manilow was playing in concert at the university.  I was so envious that I could not go see him but I had to focus on making it out of basketball camp alive and apparently my psyche was concerned, thus the midnight hallway basketball game that scared the crap out of my Grandma.




Flash forward to last night, 36 years later I FINALLY got to see the now 70 year old Barry Manilow in concert in Orlando, Florida and it was AWESOME. Hubs won tickets on the radio....105.9 Sunny FM....sweet seats in a Founders Box.  The music was fabulous.  Barry was fabulous.  His voice hasn't lost a bit of its sweetness.  He can still hold a note for 7 days straight. He is still a fabulous musician and he is still really funny.




Payday came and went with no deposit for some unexplained reason so we drove there with a quarter tank of gas hoping it would last.  It did.  (Thank god). Both of us slept all day to get to the point where we felt well enough to leave the house for a few hours.  We had the sideways quizzing trying to evaluate who felt better to drive and we agreed that we would leave early if we started feeling worse (as we had in November at the TransSiberian Orchestra Christmas Concert).




We did a lot more when Walt was healthy and it was only me with ME/CFIDS.  I knew that he could drag me home if I collapsed and he was level, very level so there was just no worry.  Not now. Now there is much worry and both of us are very ill so it is a miracle beyond miracles when we actually coincide feeling well enough at the same time to do something like this concert.




Our seats were in a Founders' Box and we could stand up and move around which has become an essential part of any event including just going to a movie. We have to frequently change positions, from sitting to standing and frankly I'm on the verge of bring a cot with me everywhere so I can lie down too.




But Barry....oh Barry....he wasn't messed up at all and for a few moments in a few songs I was back in my younger days listening to that music, usually at a school or church dance, which I inevitably flowered the wall.  Such is the life of a skinny, tall girl from the other side of the tracks in a teeny, tiny, rural Wyoming town.  But the music....it was awesome, dancing or not.




Every time I get to see one of these old performers I feel grateful to get to see them one more time.  These concerts though.....especially now that we are on disability and could never afford the tickets....they seem very opulent and I think that we (I) have been very spoiled in so many ways.  There was a day when my former husband and I chose to use grocery money to go see REO Speedwagon and then later Bob Seger.  Even while we were just scrimping by on tips and minimum wage.  How did we do that?




So here is the Barry of yesterday - as in just yesterday....looking good dude and.....









Here is the Barry of 1978....

Not too shabby Barry.  Not too shabby.


My hope and prayer is that a cause, treatment and cure are found for this awful illness that Walt and I have.  And Barry reminds me of the message that always came from both my mom and my dad that music is a fundamental part of happy.  So I sing every day.  I hum to increase the nitrous oxide in my system.  I sing Do-Re-Mi for respiratory therapy and I try to learn and record a new song every week.


I just know this:  it is possible to be in incredible, unresolvable pain and still have fun.  Happy is not a constant but it is usually found in song and laughter in my life.  Especially laughter.


Mr. Manilow has started a foundation that gifts old and forgotten musical instruments to the schools around the US that have still, somehow, managed to hold onto their music programs.  If you have an old, forgotten instrument in your attic or basement, even if it is broken, consider donating it to his foundation....for the kids......for the Barry Manilow in the second grade right now who needs that chance to shine.  Here's the link:  The Manilow Music Project


Peace be with you and all that jazz.....