Fibromyalgia Is AutoImmune ...NO! It's NEUROImmune! ..NO! It's AUTOIMMUNE! Part 1

 Oh my goodness.  I took it upon myself what? About 11 years ago?  Maybe 12 years ago?  To try to start learning every single bit of info about Fibromyalgia as I could.  I then in turn set out on a mission to educate every single person I could on this horrible, disgusting, vile disorder I could.  On the truth about it.  From the $hitty quality of living those of us with it have, to the dire need for more research to try to understand it and treat it.  To it being taken seriously by not only community and family members, but by others in the medical field as well!  

About the time I was diagnosed and cried, and refused to accept that I "really" had fibromyalgia, something there isn't a cure for, new reseach was saying that FMS had at first been thought of as being an autoimmune disease but that actually it wasn't classified as a "disease" at all, that it was classified as a "disorder".  That it actually wasn't autoimmune either, it was NEUROimmune.  It stimulated in the brain.  I cannot tell you HOW many times I wrote that. I talked that. I corrected people. I had people get mad at me and fight with me about it.  I was being treated by an internationally known rheumatologist at The Cleveland Clinic, and she taught me the current "how's & why's" of it being neuroimmune rather than autoimmune.  Let's now fast forward to July 1, 2021.  An article titled "Fibromyalgia Likely The Result Of Autoimmune Problems" in Science Daily science news rocked my world!

This college.  More specifically, this exact building/department of this college, has now changed it all once again.  Kings College London, department of psychology and neuroscience teamed up in collaboration with the University of Liverpool and the Karolinska Institute, to do a new study.  THIS study, led proof that FMS IS a autoimmune disease.  

"Professor Camilla Svensson, the study's primary investigator from Karolinska Institute said, "Antibodies from people with FMS living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings. The next step will be to identify what factors the symptom-inducing antibodies bind to. This will help us not only in terms of developing novel treatment strategies for FMS, but also of blood-based tests for diagnosis, which are missing today."

The above quote that I've pulled straight from the Science Daily article, sounds pretty good. It lends HOPE, once again.  HOPE. There's that little four-letter word, once again.  

The premise of this study, was that they injected anitbioties from people living with Fibromyalgia (from 2 different countries) into mice.  They also injected antibioties from people that do NOT have fibromyalgia, into mice.  The mice that were injected with the antibioties from people with FMS, developed clear and concise symptoms of FMS.  Obviously, the mice injected with antibioties from people that don't have fibro did not develop those symptoms.  

Now, here's where things get really interesting to me.  The mice that had been injected with the antibioties of people living with fibro, returned to "normal" once those antibioties cleared their system.  WHAT?!  You mean if the antibioties can be cleared out of the body, we wouldn't live the life we currently have to lead?  Feeling drained of EVERY. SINGLE. OUNCE. of enegry?  Being in PAIN every single day of our lives?  The sleep disturbances, the cognitive delays. Feeling like our joints have had a vat of concrete poured into them. All of that could be GONE?  Umm ...are we finally talking that a cure may be on the horizon?!  Or even as I've b!tched, moaned, begged, and pleaded for all of these years "At least a solid, universal treatment plan that would work for EVERYONE"??!  It sounds like it may be feasible, folks.  It's too unreal for me to even be able to comprehend at this point in my life.  

Umm, yeah.  More about where/why this photo of me came about, in another post that will be on a totally different subject.  I just thought the face I was  making here was a little fitting for the way I'm currently feeling at this moment haha.  But anyway, the article goes on to talk about how this could lead to having a true blood test to diagnose fibromyalgia with in the near future, as well.  If we had THAT in hand, it would be a whole heck of a lot harder for doctors to refute the reality of FMS.  Because as I'm sure most of you have personally encountered in your own lives, there are still doctors that disbelieve, everywhere you turn.  -That still sickens me as well lol.  You can read the whole article by going to THIS LINK

Now, it's been an entire 14 months to the day, since this "new" study was published.  What is the current update to this study?  What more has been accomplished in the past 14 months since this hot news hit the press?  Dear Lord, please don't tell me "there haven't been funds to continue this research" or I swear I might have a tantrum, a full blown MELTDOWN, like my 2 and 3 year old granddaughters have been known to have on an occassion.  Or two. Lol  Will I even be able to get an update on it?  That I don't know.  What I DO know though, is that I will give it my best shot to get those answers for you guys.  For myself too, who the heck am I kidding?  I want to know every bit as badly as you all do.  Therefore, I solemnly swear that I will reach out to every single person  listed in this article asking for an udate to the study.  -Every person listed in it, that I'm able to find an email contact for anyway haha.  That means that I just added another *goal* to my to-do list for tomorrow.  I have to dig for some email contacts for another area of my life, so I'll just tack these on. 

Stay tuned, my Fibro-Froggies!!  I'm praying I have more info for you, in next weeks blog post.  Keep your fingers crossed and remember to "Never give up HOPE.  Because without HOPE, you don't have anything".  

Sharing Correct Information About Fibromyalgia

I just saw this going around facebook:

"Fibromyalgia (= a muscle disease)

I am asking everyone to post for 1 hour as your status. I'm pretty sure I know which of my friends want to do this.
If you know someone who has fibromyalgia.. my hope is that in 2017 a cure will be found. Do you want this message posts for (at least) 1 hours? For those who have fought or are fighting with fibromyalgia. 🙏🎗Copy and paste do not share! Xoxo"

While I'm happy that the word about Fibromyalgia is trying to be spread to create awareness, it makes me sad when misinformation is being shared.  Fibromyalgia is not a muscle disease. In fact, it isn't a "disease" of ANY sort.  It's a actually a "syndrome", and it's neuroimmune rather than autoimmune although many people feed into the misconception that it's an autoimmune disease. Click the previous link to read more about neuroimmune syndromes.  

Misconceptions as the one above, are what we need to dispell as a community of sufferers.  Misinformation is why the awareness of fibromyalgia is so important.  We need to share, share, share to make others aware of what we go through, but we need to be diligent in making sure that what we share is the correct information.    ❤🍀"

Planes, Trains, and Automobile's - Part I

Yep, I experienced all of these ways of transportation within the past week.  A good friend of mine has been going back and forth between Ohio, where she lives, and Maryland, where her mother, brother, and sister live.  Her mother has dementia that's rapidly progressing, and needs a knee replacement.  Her brother is the top salesman in his company ...which ironically one of his biggest accounts is Stryker, who makes the knees and hip replacements.  Needless to say, he's a very busy man.  Her sister is in ailing health and it's really hard for her to take care of their mother on her own, while her brother is at work.  So my friend has been spending a couple of months at home, then goes to help out for a couple of months at a time.

My friend is nearing the end of her two month stay, and wanted me to come visit for a vacation for a week, then drive back home with her so she wouldn't have to make the trip back here alone this time.  I've never flown before, and was scared to death.  A fear of heights didn't help any.  So, on April 24th I climbed aboard a Southwest Boeing 737 and prayed for the hour and a half flight to Baltimore.

I didn't necessarily like the flight, but I didn't out & out hate the flight either.  It was raining when I departed Detroit Metro, and we had some turbulence.  For quite awhile, the pilot wouldn't allow the flight attendants to get up and move around because of it.  I'm not going to lie, it scared me a few times.  In the end, I was fine though, and made it safely to plant my feet on the ground on the other side.

I had fun while I was there.  I loved her whole family, and they really took to me as well.  The mother and sister kept trying to marry me off to my friends son, who's been my bff for close to 18 years now lol.  The sister cried when I left, which made me feel good.  The mother, got angry with her dementia and was yelling at me "You not go.  You stay here.  This is your house.".  She has a pretty bad accent, but it's so cute!  This ladies' brother was a diplomat, and brought her and his other sister (who's been gone now for 20 years) to the U.S.  She lived most of her life in the U.S. around embassy parties and dinners.  She has class.  Yet, the dementia now makes her spout out cuss words when she's upset.  -Cuss words that she'd faint if she was in her right mind, and even thought of saying lol.  I'm not going to lie, I laughed so hard the entire time I was there.  Not because I was making fun of this poor, sweet woman, but because it was just honestly funny listening to her.  I've brought back two sentences that I'll never forget for the rest of my life.  I will mis-spell the first word of the first sentence, and the last word of the second sentence, although I'm sure you'll know what I mean.  Now, I'm typing this as it comes out with her cute little accent.  "Fcuk the shut up!"  "You sella ma bi!*h".  A lot of the time, those two sentences were ran together as one.  I have a bad sense of humor, you may say?  Well, maybe.  I still think it's the funniest thing I've ever heard ...especially coming from this little old lady who has photos of her brother with kings, photos of big dinner parties hosted in her home for wives of diplomat's, a personal photo her mother took of T.E. Lawrence (Lawrence of Arabia) in her home, etc. hanging on her walls.  Her father also had held a very political position as well.  

I learned so much from Grandma B while I was there.  Oh, the stories she shared with me. At times, it sounded as if she was reading from a fairy tale that was etched in her head. With the political problems Italy faced in the late 1920's-1930's, Grandma B's father packed up his family and moved them to Baghdad, where he took on a political position.  So of Palestine and Italian decent, Grandma B grew up in Baghdad, learning to speak Arabic.  Her father died when she was a around 5 years old, and her older brother took her and her sister under his wing, and stepped into a father figure role.  He also, followed in his father's footsteps in the political arena.  Although living in a Muslim country, with their heritage they are Christians rather then Muslims.  They followed the Catholic church.  One story that was recited to me, was about her brother saving the life of a 30-some year old school teacher in Baghdad.  One day, a lady showed up at Grandma B's house.  She said when she answered the door, a very distraught woman was begging to speak to her brother.  She calmed the woman down enough to find out what was wrong.  The woman said that "they" had her son, and was going to kill him the next day.  She said that her son didn't do anything wrong except to be a Christian.  She said he was a good man, a school teacher that loved his profession.  She said she'd been told that Grandma B's brother was the person to go to, if her son was to have a chance at having his life spared.  Grandma B's brother was home, taking his afternoon nap.  She went upstairs and woke him, and told him of the situation.  He picked up the phone, made a call, then told Grandma B to go downstairs and tell the lady to go pick up her son.  That he would be released to her upon arrival, and his life would be spared.  Grandma B said when she went downstairs and told the lady she said "That's it?  My son won't die?" then fell at Grandma's feet crying.  A few days later, trays of jewelry and food was delivered to the house, in thanks from the lady who's son was saved.  Her brother made them return everything to the lady, saying that they didn't need this stuff, and it was very valuable to the lady and her son where he was supporting his family off of a teacher's salary.  He refused to take it and said "thanks" was enough.  Just so much history.  So many interesting stories I heard.

I'd arrived on Wednesday, and on Friday, my friends cousins had a get-together for dinner and drinks at a restaurant called Chadwick's in Alexandria, VA.

 

We all met upstairs,

and sat along this wall, with the tables all smooshed together.  

I knew that most of the cousins at this get-together were very wealthy and influential.  I'm just a poor broke white girl that's over-weight and doesn't have a "real" job due to countless health issues.  I was very nervous to go with my friend and her brother to meet the rest of the family.  My fears were for nothing though.  By the end of the night, I had one of her male cousins sitting on either side of me, and we were immersed in conversation.  The one cousin, is a big realtor and restaurateur.  The other cousin, owns a home here in the states and one in London and splits his time between the U.S. and England.  At first, I couldn't understand why they'd want to talk to me.  I soon figured out though, that they're just people.  They're just regular men like any other I've ever known.  By the end of the night, I'd heard all about the wedding of Michael's daughter the summer before, at The Four Season's Hotel, and about London from Elkon.  They'd heard that Fibromyalgia was a neuroimmune disorder, and what living with it or autoimmune diseases such as Lupus really was like.  They'd heard about my desire for advocacy.  The night ended with me receiving hugs from everyone, an invitation for my friend and I to come spend a few days at Michael's estate, and an invitation from Elkon's wife for my friend and I to come to London any time we wanted, and spend time with her and Elkon, there.  It was a night like none I'd ever had before in my life-time.  Michael wanted his picture taken with me (for some unknown reason lol) so my friend took one with her cell phone.  When she forwards the photo to me, I'll post it.  

Stay tuned for Part II, my day in D.C., tomorrow.

A Dilemma - Wrestled With Should I or Shouldn't I

Someone contacted me and asked me to post the link to my donation page for the seminar (which I kindly pointed out was located on the right hand side of this blog), and said that they know the struggles I've gone through this year, both mentally and physically.  They said that they know it's been very hard for me monetarily with my husband leaving and my health not allowing me to work, because they're a facebook friend of mine and have seen my status updates. They asked me to post my PayPal email address too.  Well, last Friday I'd posted on my personal facebook page that I hadn't received a child support payment in two weeks and the 2 previous payments I'd received wasn't even for as much as it's ordered to be.  I said I could about cry because I was over $400 short on bills for the month and still had Christmas shopping to do. I had a lady on there tell me I should just be grateful to get anything.  I explained to her that in the past this wouldn't have been a problem because I could, and did, work to support myself and my family.  I told her that it's just so very hard now, because I'm sick and unable to work.  She responded by telling me if I'm unable to work, that I shouldn't have any kids and told me "for lack of a better word, you're USELESS".  Yep, she sure did and she even used the caps as I've quoted.  I can't tell you how much this stung.  My oldest daughter, 23 and a grad student, responded and told her that I've always found a way to support my children and that I've always been a good mother.  The request for my info came in on Saturday and I was still pretty raw with hurt feelings from Friday, so I've just sat on it.  When I emailed the person back and thanked them for the offer, I told her it would make me feel bad to do what she'd asked me to do because I was afraid that others might think and feel about me the same way the facebook lady felt.  She responded back and told me that she herself wouldn't be able to do very much but that she really wanted to do what she could and that I should put it out there because even if it's only a few dollars, that a lot of people like to help others that are down on their luck at this time of year.  She told me that right now keeping up this blog is my "job" and that it's not wrong to accept donations for the "job" I do.  I still feel really funny about this, but I've decided that I'll do it. Please, no one think you "must" contribute to either (the seminar donation page  for the seminar overhead or my paypal for my personal use).  Getting these words out is worse then having teeth pulled to me.  I extremely dislike asking for help.  It was explained to me though, that if I don't post it that I could be taking someones good deed for God, away from them (that is the way my mother explained it to me when I told her about this situation).  Sooo, if you want to donate to the seminar fund, there's a GoFundMe button on the right hand side of the page.  Just click it and it'll take you where you need to go.  If you want to contribute to my PayPal for my own personal bill/Christmas usage, my PayPal address is: jaammull(at)aol(dot)com.  I'm completely embarrassed to do this, yet I'm humbled that someone thinks enough of me to want me to post it.  I'm conflicted.

Mediflow Waterbase Pillow

Welcome to day 2 of my Holiday Gift Guide & Countdown To Christmas!  This product is one that I've talked about in the past, I guarantee you I'll always talk about it!  The Mediflow Waterbase Pillow is one of the best inventions I've ever had the privilege to have.  Still, to this day, I tell everyone including my own parents even, that I'll never use another pillow again.  I'm a Mediflow Waterbase Pillow convert.  -They've made a "lifer" out of me!  Also, Mediflow is kind enough that not only will they be providing a pillow in the prize pack for the winner, but they're also going to give one as a prize of the day!  How cool is that of them?!  Read my review on the Mediflow Waterbase Pillow below, then leave me a meaningful comment on this post about what feature you like the best about the pillow, after reading over their website.  I'll take comments until 11:59pm tonight (Thursday December 6, 2012) when I use Random.org to choose a winner!  Comment of "thanks for a great giveaway" etc won't get you an entry. Please remember to tell me what you believe the best feature of the pillow would be! You can get a 2nd entry, by sharing this blog post on your facebook page. If you share the post, leave me a comment that you've shared it. You can earn a 3rd entry, by pinning the post to your Pinterest.  If you pin it, leave another comment telling me you did, and your Pinterest name so I can verify.  I'm also going to give you one last way to earn a 4th entry.  You can earn your 4th entry by sharing this post on your Google + account.  Leave another comment saying you did so, and what your Google + name is.  So, Good Luck to you all!

I'm so excited to bring you this review and giveaway compliments of Mediflow!  If you're plagued by any type of neck or shoulder pain, then this is the pillow for YOU!  Mediflow actually refers to the waterbase pillow as a sleep system, rather then "just" a pillow.

The way the Mediflow Waterbase Pillow works, is that under the plump, soft, polyester fill it has a waterbase on the bottom.  The fill in the pillow, has a special finish on it to keep it plump and cloud-like and makes the pillow long-lasting andwashable!  The waterbase of the bottom of the pillow, gives your neck continuous support that you can't get with a traditional pillow.  The great thing is, the user can adjust the amount of water for the unique support that their own body needs. After you get the amount of water adjusted, the system will support your neck and spine while you sleep, even as you're turning over or switching sides!

Now, if you're anything like me, you're probably wondering if trying to fill the pillow is a big hassle or not.  The day my Mediflow Waterbase Pillow arrived I was so excited to try it out that night, but I was also a nervous wreck that I wouldn't be able to fill it and that I'd make a big mess trying to fill it.  You can see in the photo above, that the pillow comes with a little funnel type thing.  You stand the pillow upright on a chair, insert the funnel, and then poor in the amount of water that you've decided to try.  Once you have the water in it, you run your hands down the pillow until you hit the water area, to push excess air out, then insert the cap to seal it shut.  By doing this step, it keeps the pillow from making a "sloshing" sound when you turn over.  If you hear the water, then you don't have all of the air out of it!  That's it!  Super easy!  I studied the water chart and measured out the amount of water I thought I'd need, and then tried the pillow.  It felt amazing to me, but I still needed just a bit more support.  I just added a little bit more, and it was perfect!

You don't have to take my word for it though, nor do you have to just take Mediflow's word.  John Hopkins Hospital conducted a neck pain and quality of sleep study, and the Mediflow Waterbase Pillow ranked the best out of all pillows tested!  The Mediflow pillow helped to reduce pain patients felt upon waking, it increased their pain relief, and it also improved their quality of sleep!  As a person who suffers from a severe case of Fibromyalgia, I can attest how hard it is to get quality sleep when you do sleep.  Insomnia is a horrible beast of Fibromyalgia that plagues me.  It's also been proven that people with Fibromyalgia never get into a good sleep cycle.  In my honest opinion this pillow is worth it's weight in gold!  I'll never ever own another pillow again.  After just one night of sleeping on the Mediflow Waterbase Pillow, I knew that they'd convinced me!  Therefore, I'm excited to bring a giveaway to you all, so that you'll have a chance to win your own Mediflow Waterbase Pillow!

Giveaway will run from 12:01am September 27, 2012 - 11:59pm October 11, 2012.  Giveaway open to US residents.  This blog is not responsible for shipping the prize.  Prize will be shipped directly from Mediflow.  Winner will be listed on the Raffle Copter form when contest ends, and I will email the winner.  Winner will then have 48 hours to respond to me with their shipping info, or a new winner will be selected.

*I did not receive any cash compensation for hosting this review and giveaway, but I did receive one of the pillows to try out, and give my honest opinion of.  All opinions expressed are my own without any influence from Mediflow.