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Thursday, September 1, 2022

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".  


Thursday, August 25, 2022

Hemiplegic Migraine, Multiple Sclerosis, and Life

 Hey there Fibro-Froggies!  I've had a long hiatus, but I'm back!  I'll be posting as I used to, trying to educate the general population about living life with Fibromyalgia and other chronic pain & fatigue issues. Advocating for more research to try to find a cure, or a solid universal treatment plan that works for EVERYONE, and to try and help others that live with chronic pain conditions navigate this thing called "life".  Over the last few years life has taken many twists and turns for me, with many peaks and valleys.  Living with chronic pain conditions, we all ride the roller coaster of life.  Sometimes we laugh and have fun, but more days than not, we just wish we could hop off this roller coaster that we're stuck on.



A few years ago, I started experiencing some new symptoms.  The first time it happened, it was around midnight. I was sitting at my computer talking through PM on FB with a friend. They worked 2nd shift and had just gotten off work and asked me if I wanted to meet them at a restaurant to grab a bite to eat.  I was trying to tell them that I would like to, but that I had already taken my night time sleep meds.  I typed it out and hit enter.  The response back was "Huh?" ...I thought "what the heck?!  How could they not understand what I just said?  I looked up to read what I had put, to see how I could possibly write it any clearer.  When I looked up to read it I was dazed!!  What was showing on the screen was something to the effect of "aooxxxazzzoiejk".  I said right out loud ...."WTF?!  THAT isn't what I typed out!" and I typed again, telling them I'd like to, but that I had already just taken my nighttime sleep  medicine.  I hit enter and looked at the screen.  Once again I just had a random string of letters that didn't spell anything.  To say I was scared at that point, was an understatement!  I immediately thought "Am I having a stroke?!".  My youngest daughter was living with me at the time and her bedroom was upstairs, as was my computer and craft room that I was in.  I jumped up and went to take a step to go to her to ask if I was having a stroke or not, and I was super off balance.  I couldn't really walk.  I yelled for her and she came running in.  When she came in she immediately said "What's wrong with your face?"  I told her "I don't know, what IS wrong with my face?"  Courtney told me that both of my eyes were drooping. She was able to make out what I was saying, but my speech was slurred and I've been told I wasn't making sense all of the time.  I got the point across of what had happened with me trying to type and she looked at it.  She helped me get downstairs and I made her take me into the bathroom where I had a mirror.  I looked to make sure that both of my eyes were drooping, and not just one. -Which would be an indication of a stroke.  I then stuck my tongue out in front of the mirror to see if it deviated to one side or another.  It did not.  Whew.  I was pretty sure at that point that it was NOT a storke!  -Thank Gawd for me having a medical background lol.  I still was scared shitless though.  By the time this all had been done, I was coming out of whatever had happened.  She helped me get from the bathroom to my bed and I laid down.  I'll tell ya though, I didn't sleep. I kept laying there thinking that I was going to die. I really, truly, thought I was on my way out lol.  

When the sun finally came up, I too was up.  I still was literally in tears, scared shitless about what had happened. I knew my parents were early risers and my mom had an aide that would be there at 8am, so I threw on clothes and off to my parents house I raced.  I walked in, and loudly announced "I think I MAY have had a stroke last night.  Although it was both of my eyes that were drooping not just one, and my tongue didn't deviate to one side or another.  So honestly it doesn't fit a stroke but it has to be something serious.  I think I may be dying"!!  I along with my moms aide both were on google on our phones, and I then told everyone, "yeah, see I don't fit the catagories that it was a stroke, but everything else sure seemed like it was".  As soon as my doctors office opened I called for an emergency appointment and they got me right in.  


First off, I love my doctor.  If she would ever up and leave the community, I would up & leave with her. I swear I'd make it happen haha.  She is one of the very FEW doctors that believe in Fibromyalgia and knows the significance of living with it.  Like she gets it sooooo much, that I'm sure either she has it herself, or someone in her family that she's very close to has it.  Anyway, when she walked into my room, she could tell how scared I was.  She told straight up "Ok, this definitely wasn't a stroke because it 100% wouldn't affect both of your eyes.  She told me if she had to guess, she would say I either had myasynthia gravis, or MS.  Ummm ....excuse me but myo-what??!  She ordered an MRI of my brain.  One with contrast and one without.  Guess what?  The scans came back completely NORMAL!  How?!  What the heck had happened to me?  She told me upon follow up, "Let's just hope it was a fluke and never happens again".  Ok.  Let's hope.  

Let's fast forward about 6 months.  All was still good and I was "normal".  You know, OUR normal.  The NORMAL that those of us with fibro and other chronic pain conditions have.  -No more weird face drooping.  No more weird random strings of letters when I try to type.  Then one night, it was late.  -Because you know, with fibro my insomnia is one of my biggest comorbidities.  It is just awful!  Anyway, the time had come that I had moved in with my parents to start helping take care of them medically and help them around the house.  I'm an only child, I have medical POA of them both, and unfortunately their health was (IS) declining.  Way more rapidly than I would like for sure.  So it just made sense that I move in with them, to make thins easier on all of us.  Well, they were having trouble sleeping that night too and they were up in the living room.  I got up to walk out there and tell them something.  It's been so long ago, that I don't even remember what I was trying to tell them. But anyway I walked out there said whatever it was I had wanted to say and my dad looked at me and said "What?"...I said "what do you mean what?  I said .....x.xxxx".  I again was met with "Amy, I can't understand you.  You're not making any sense".  At this point I was starting to get mad.  I said it all again, very loudly thinking that where they're getting hard of hearing they just couldn't hear me.  My dad again very loudly told me "I don't know what you're saying.  Are you drunk or on drugs or what?" ...what in the HELL did he mean?  I could hear myself talking. I could hear the words plain as day.  What was wrong with my dad that HE couldn't understand me?  I went to take a step and I lost my balance and stumbled into their grandfather clock.  I couldn't understand what was going on.  He just kept telling me that I must be a closet alcoholic or on drugs or something and if I needed help, I should get help.  He said that he could tell by my face, that I was on something because my eyes looked so funny. OH MY GAWD was I infuriated lol.  My mom said to let her help me get to bed, so I did.  I woke up the next morning and I was still pissed off lol. Like seriously pissed off.  When I walked out to the living room my dad brought it up again and I just kept defending myself that I had not had a sip of alcohol (I take way too many prescriptions these days to mix alcohol into it all).  I wasn't on any drugs besides those prescribed to me.  When he brought up my eyes being funny again, it finally hit me!  I said wait a minute were my eyes drooping?!  My mom said "YES!! That's it excactly!  Your eyes looked really funny and that's why. They were drooping"!!  I said "Oh my gosh!  It's happened again.  You know, remember 6 months ago when I came over here early in the morning and had thought I may have had a stroke?  THAT is what was going on last night too!".  This is a really long story already, so I'll suffice it to say I was referred by my GP to a neurologist.  I made an appointment with the one my mom uses, because I already knew him, from taking my ma to her appointments.  I had another episode of this same thing happening again, just a few weeks later while waiting on my appointment with neuro.  


The neuro was a younger guy who really listened to me about my history.  He was great!  He told me though, that there was no way it was myasynthia gravis.  He explained why not, but I have this thing called fibro fog, and I honestly don't remember why it didn't fit the myasynthia gravis catagory.  He said that he thought I have either hemiplegic migraines or MS.  I told him no, I couldn't have MS because I'd already had 2 mri's on my brain and I didn't have any lesions. I told him one had been done without contrast, so then my GP had ordered one with contrast and all was good.  I then told him that it couldn't be SHM (sporadic hemiplegic migraine) because I never have had a headache at all when this happened. He started shaking his head. He said that with SHM, it's a very rare migraine and that it's way different than a "typical migraine".  He said I didn't have to have a headache with it.  He also said he wanted a new mri of my brain, but also wanted one of my neck and my spine. He said that MS doesn't always show in the brain. That it sometimes hides in your neck or spine.  Hmm ....ok, I scheduled the MRI's.  They couldn't get me in for them, for close to a month.  2 or 3 days before my MRI appointment, our whole house caught covid.  So, I had to call and cancel them, telling them we were all in quarantine for covid.  Instead of rescheduling me right then, they told me just to call them back to reschedule once I was recovered.  MISTAKE!!  In my usual fashion, I kept forgetting to do it.  

Fast forward to now.  I still haven't had the MRI's.  This has been somewhere close to 2  years ago.  To my knowledge, I haven't had any more episodes like I had in the past.  BUT, I've recently developed some new symptoms.  Symptoms worrisome enough to me, that I was going to call the neuro and get another appointment, knowing that the MRI's would need to be rescheduled.  Recently, and mostly at night. I will have random body jerks.  Or twitches. I'm not sure exactly how to describe it.  I'll be sitting here at my desk and sometimes my finger will jerk.  Sometimes my whole arm from the shoulder will jerk.  Last night my entire right side jerked. It's so weird, ya'll!  Let's just say as MY luck would have it, right when I was getting ready to call the great neuro Dr. Patti, my mom and I both received letters in the mail from the practice saying that Dr. Patti was leaving and would no longer be our doctor, but that the rest of the staff was still there to serve our needs.  UGH!!  I am horrible about going to see a new doctor.  I honestly feel like I've been traumatized in the past from mean, rude doctors bascially telling me I'm faking. Telling me that fibro isn't real.  Basically telling me I'm nothing but a fake.  I've left so many doctor offices and ER departments in tears, that the thought of going to see a brand new doctor that I don't know, causes me more anxiety than I care to share.  I know I'm going to have to though. But I'm still procrastinating picking up the phone and making that call.  I know that some of  you can relate to every word I've just said.  -And THAT is what sickens me.  It truly makes me sick that we are treated like that.  

Last night, my Ma was sitting in my office with me.  She has a recliner in here, and my computer desk chair is the ONLY piece of furniture in this house that I can sit in half way comfortably for longer than 5-10 minutes.  I have a large computer monitor so I stream tv in here on my computer and that is how I watch tv.  She saw the large jerk the right side of my body made, so all day today she's been on me to call the neuro for an apppointment with someone.  Whoever they decide to pawn me off on.  It's now 4:46pm and I haven't picked up the phone yet.  Not today.  TODAY, I'm reconnecting with my fibro froggies out there and letting you all know, that I'm back.  I'm back for good, too!  I know that my one little voice probably won't help a bit in the grand scheme of things when it comes to education and advocacy on living with chronic illnesses, but if I don't try to spread awareness, try to educate and advocate for all of us living with these nightmare illnesses, and try to advocate for research, then I can't complain when a doctor treats me like I'm crazy when I present with my symptoms. I can't complain that there isn't a cure, and I also can't complain when someone blessed enough to NOT live with a chronic pain and fatigue illness, doesn't understand where I'm coming from.  It's going to take a LOT of voices for true changes to made concerning the stigma, and for more research to be done.  And maybe ....just maybe my voice will be the one that adds to the pile of others, that give the push that's needed on these fronts.  

If I know that any of my words have touched even ONE person, or helped ONE person understand that the life we live is truly a life trapped in HELL, then every word I've typed will be worth it.  If I make ONE person feel like they aren't alone in this fight, then it's worth it.  Even though I've been MIA from this site, I still have been living my life with this blog's motto in mind.  -Never Give Up Hope!!  -Without HOPE, you don't have anything!!  I'm also am willing to once again accept interview requests, to write guest author posts, magazine articles, and life-coach.  I am once again offering seminars on how how to live with chronic pain, AND corporate seminars to educate department heads on how to accommodate workers that have chronic pain conditons.  With just a little education, employee retention and productivity can both be upped!  Also feel free to contact me if you're looking for a key-note speaker, or any type of public speaking engagement.  I'm a nationally certified clinical medical assistant who can life coach on topics involving divorce, living with chronic pain, and motivate those who want to lose weight employing basic nutritional goals with light to moderate exercise.  I've lost over 100 pounds, myself with a full RNY Gastric Bypass, and employing light exercise (we all know how hard it is to motivate ourselves to exercise when we live with chronic pain!),  I am here for you, to help motivate you and show you that you can still navigate this thing called "life" when you have chronic illnesses.  It's hard, and as before I will NEVER fluff my blog and say that anything is easy to do when you're a fibro frog or have ANY other  chronic pain illness.  


The biggest thing to remember my friends, is to Never Give up HOPE!!



Saturday, July 17, 2021

Just A Girl

 


You're scrolling your social media, and you run across this picture.  You glance at it. It's just a girl, in an outfit for a night on the town.  That's what it appears to be at first glance. But if you really know this girl, it's SO. MUCH.  MORE.

For those that don't know, the "girl" (yeah, I'm fluffing my own feathers because we all know that I'm actually a 50, yes FIFTY, year old woman. Ugh!) is ME!  Even those that knew the person in the photo was me, may not know what it took for me to put that outfit on and go out in public. Let alone happily pose for all of the photos I had taken last night.  This photo represents my own personal growth, and it's HUGE, folks.

I've been away from this blog for quite awhile now, and I'll get more into why, later in this post. Right now though, I want to talk about the emotional gains I've made over the past year and a half.  Emotionally, I'm a totally different person. Honestly, even I am shocked at myself.

There are posts on here, that let you all know that I had a full RNY Gastric Bypass September 25, 2018.  Wow! I truly can't believe that I'm coming up on my 3 year anniversary of the surgery.  I lost well over 100 pounds. At one point, I was at a 133 pound loss.  I've gained a little of that back, but I'm still over 100 pounds lost, and still wearing size small clothing. Some of which is too big on me lol. 

Most people who are obese think "if I could just lose weight, I'd be so happy"!  I was one of those people.  Guess what? I lost the weight, and I still wasn't happy. I mean, I was happy I lost the weight, but then other insecurities crept in.  I had (have) all of this lose skin. It just hangs. What shows to the world the most, is the lose skin on my upper arms. Those of us on bariatric weight loss boards, call them our "bat wings". Yuck, yuck, YUCK!!  

So I used to be ashamed of my fat rolls. Now, I'm embarrassed of my skin rolls lol. To the public, seeing the skin rolls under clothing, they look just like fat rolls. Plastic surgery would take care of all of this.  Unfortunately, I'm a 50 year old woman who's been single for just over 10 years now, so just have myself to rely on monetarily. Insurance will cover some things, but not all of it.  I've tried finding a plastic surgeon that would be willing to do the work I need done that insurance won't cover, pro-bono in exchange for me allowing them to film my surgeries and for me to list them as a sponsor in my seminars but haven't had any luck. So if anyone knows anyone that may be interested, PLEASE send them my way haha! When you have massive weight loss, you end up trading one insecurity for another. That is the thing no one ever really talks about publicly and for the life of me, I don't understand why not lol.  In my opinion, this is something that people should know ahead of time.

Awhile back, I was so blessed.  I was chosen to be on a television show that aired just over a year ago on TLC, called Dragnificent.  When I say I was blessed, I truly was. I could not have had better or more caring producers and camera men. The four Queens that starred on the show, are the BEST people I've ever known. Just the entire crew was phenomenal!

The head show runner, Mike Kelton from AlkemyX Productions, asked me if I'd mind if we tapped into the repercussions of massive weight loss a little bit.  I was scared to death, but I said yes. I agreed that this is something that isn't talked about enough, and that the public should know about. At the same time, the thought of talking about my insecurities for the entire world to know, intimidated me.  

Telling my story, of how I felt having all this lose, sagging skin hanging off of me, was really an emotional thing. We also talked about me having fibromyalgia and other chronic pain and fatigue conditions.  We talked about the verbal abuse I'd lived with throughout my marriage.  The week of filming was beyond a doubt, the most emotional week I've ever had in my entire life.  I came out of that week telling everyone I knew, that when my episode aired I just KNEW some shitty tabloid would end up running with a headline entitled "America's Biggest Cry Baby Bitch"!! Thank God, they had bigger and better people to contend with that week and my biggest fear did NOT come true LOL.

There came a time during taping, that Mike asked me if I would mind showing some of my extra skin on film.  I immediately welled up with tears, and said "how much of it do you want me to show?" He said "As much as you're comfortable with. You do NOT have to do this if you don't want to, Amy but I think it would really help a lot of people".  In true Tell-It-:Like-It-Is-I'm-Not-Your-Typical-Rah-Rah-Always-Positive-Let's-Share-The-Truth-With-Everyone fashion that I've always had on this blog site, I sucked in my breath and nodded my head yes to him, as tears ran over the brim of my eyes.  When I walked to the mirror for the part where the queens asked me about it, and I was to show the skin, I was choking back tears as hard as I could. I was literally shaking inside. My upper arms I showed first and I was crying.  I then quickly showed a little of my stomach apron. I did it all as quickly as I could, to try and get it over with and couldn't bring myself to really show it all and everywhere on my body.  

When choosing a dress for my Butterfly Party, -the party I was having to reveal the new, skinny me to friends and family that hadn't seen me since my weight loss, I made it clear to them that I wouldn't wear anything that didn't cover my arms.  I just didn't have it in me. Humiliation over my upper arms showing to the public, absolutely consumed me.  

Pounds of extra skin still covers my body.  I AM finally (man-oh-man do I have stories of why it's taken this long to get this surgery for you all but that's a whole 'nother blog post my friends lol) having surgery on my breasts, August 18th. OH-MY-GOSH!  That is only 4 weeks from  Wednesday!  That time is going to fly by lol.  I'm blessed that my insurance is covering a reduction and a lift for me and that I was able to get the money to cover the axillary liposuction on the sides, to tie it all together. I can't tell you how much this surgery means to me. It isn't all for superficial reasons, either.  Red, deep grooves plague my shoulders every night when I take my bra off.  It hurts. My upper back, kills me all of the time from the weight of these hanging, sagging, monsters.  The pulling and tugging on my back, has caused a spot of neuropathy.  Just to the left of my spine will either have a super deep itch that literally drives me MAD, or else the spot will tingle for hours on end. Yep, permanent nerve damage. My GP is convinced that my upper back pain is caused from my breasts, then fibro exacerbates the pain and symptoms.

My insurance will cover to have my stomach apron removed, but will not cover the tummy tuck portion of the surgery. I absolutely cannot cover it myself, so although I'd absolutely DIE to have the whole she-bang done, I'll only be having the apron removed. My plastic surgeon told me that I could have my stomach done, roughly 3 months after my breast surgery.  Insurance may then cover to have the extra skin removed from my inner thighs.  I'm praying that they cover it because I cannot do it myself.  Now, we have the upper arms.  The bat wings.  Chances of insurance covering that, is slim to none.  So I've had to wrap my head around that fact.  I've really been working on myself mentally, that the bat wings are probably just going to be a part of the new me, for the rest of my entire life.  

Coming to terms that I'm going to have bat wings for life, was a super hard thing for me to do.  I decided though, that I couldn't go the rest of my life, not showing my upper arms.  Is never again wearing anything that doesn't cover and hide my upper arms feasible?  Yes, it is. But did I really WANT to go the rest of my life never wearing anything that didn't cover and hide my upper arms, was the question. And the answer to that question, was no. Therefore, I had to get over the idea that my arms were ugly. That they made ME ugly.  That people would laugh at me, and make fun of me, if they saw them. Every time I would even think about the idea that someone may see them, I would automatically burst into tears.  I had to get over that for sure.  Guess what, people?!  I got over it!!  


I'll be totally honest, before I started filming my television episode I didn't have any clue in the world, who the four queens were that were the stars of the show and that I'd be working with.  I didn't have a clue what Ru Paul's Drag Race was.  I didn't know how extremely famous and well-known these girls were.  One day when we broke for lunch, I rode with the finance guy.  -I doubt that's his actual title, but it's what I called him. He kept tabs on the budget as we went along lol.  As we were sitting there eating our Chipotle, he was telling me about a time that Times Square in NYC had been roped off for these girls to make an appearance, and that people were trying to bust through the barriers and police, to get to them screaming and shouting their undying love for them. -Well, I can totally see why everyone would love them, after being with them lol ...but anyway .....THAT is when it hit me.  Talking with them, I saw that they too had insecurities about themselves at some point in their lives.  One of the girls, Alexis Michelle to be exact, teared up during one of my stories that once again I was half blubbering while telling the story, about 2 construction guys cracking fat jokes at my expense while I was in a national chain hardware store.  When I finished my story, she told me while she was crying, that she could relate to every word I had said, and that she herself had experienced stuff like that throughout her life as well.  It hit me like a ton of bricks. I couldn't believe it.  This beautiful woman, that was SO FAMOUS struggled with the SAME. EXACT. self esteem issues that little ole me had faced.  If she could feel like I do, and still push forward to be as beautiful and famous as she is, than I could do the exact same thing!!  

I'd never watched the show Keeping Up With The Kardashian's. I never used to watch hardly any TV at all.  I started watching tv in the past year, and recently found the show.  I binged all 20 seasons, people lol.  Just like I was mind blown that Alexis Michelle had insecurities, it again blew my mind to see that Kim Kardashian and Khloe Kardashian both had insecurities about their bodies too.  Two more extremely beautiful and famous women that had to deal with the same thoughts and fears that little ole me faces.  I used to hide. Not any more. I've been shown that I don't have to hide. I can still reach for my dreams, imperfection's and all. People like Alexis Michelle, and the Kardashian girls, really help and touch more people than they even realize, by opening up for the world to see. That is why I have always been truthful on this site. Most of the other chronic pain sites were always all "Oh we'll be fine. We're warriors" and stuff like that. I'd read that shit, and it would make me feel like I was a weak biotch that just needed to suck it up. No. Living with neuro-immune and auto-immune, chronic pain and fatigue illnesses is HARD, people. Let's be realistic. Like I've always said, if people doesn't realize what our TRUE daily life is like, they aren't going to understand the desperate need to find cures, therefore won't be as inclined to donate to, or advocate for, more research. So that's why I started TFF. For those of us that want to encourage each other, to get the REAL word out about what living like this is like, and to let others know that it's OKAY to be pissed off or have a day that you feel discouraged about your illness. I can tell you first hand now, how much MORE I believe this is necessary. Because it's recently been proven in my own life, by Alexis Michelle, the Kardashian's, and others being real about their own struggles. It gave me the push I needed, to become the woman that I am today. I only hope and pray that my blog has, and in the future will again, give someone the inner push they need to help them overcome a feeling in their life, like has been done for me.

I can't tell you why that motivated me, but it sure did. It made me start working harder on myself. It helped me to keep my head up, face forward, and push ahead. It made me realize that everyone has their own insecurities. No matter how big or how little. No matter how rich, or how poor.  No matter how famous. Every single person out there has insecurities about themselves. I never danced. I absolutely cannot dance and never could. Even the thought of dancing, made my body stiffen up and embarrassed me. The thought of people watching me or seeing me.  Bebe Zahara Benet and Thorgy Thor forced me to overcome THAT fear.  They told me they were putting me in drag (yes, females can dress in drag as females too.  We are called AFAB's ...or the term I prefer for myself, is a Diva Queen) and throwing me on stage to do a drag show in front of a live audience.  People, I have to hand it to my youngest daughter Courtney's boyfriend, Damien,  He's the one who picked me up from filming that night, and I literally sobbed and rambled the entire way home!  The poor guy looked like a deer caught in headlights but that guy did his best to calm me down and soothe me haha.  To say I was petrified, is an understatement.  Bebe taught me a little shimmy, and had me put it to the words "shaky shaky paw paw paw", and Thorgy taught me how when I'm in drag I can let all of my inhibitions go and just have fun!  I still was so scared the night of filming the live performance though, that I WAS still really stiff and have found some nasty comments online making fun of how stiff I looked.  -But that's ok.  At least a tabloid didn't run with the headline of "America's Biggest Cry Baby Bitch" like I thought they might haha!!  My sassy, sexy, sweet Jujubee took this lady that couldn't even put on eyeliner, and taught me how to transform my face!  She taught me that I CAN put on makeup.  That I CAN do anything I want to do.  


This my friends, is the smile (a TRUE, HAPPY smile) of a woman that went out on the town for the night, in a new (sleeveless) outfit, proudly showing off her batwings!!  So the very first photo in the blog post. The one that might show up on your social media somewhere that you may glance at and think "it's just a girl", is NOT just a girl, in an outfit for a night out on the town.  This is a girl, who has worked really hard on her inner confidence and is finally happy enough with herself, that she CAN be in that outfit for a night on the town.  This is a girl that with the love and support of many people in her life, has overcome the demons in her head, that used to make her cry her eyes out or at the very least blink back the tears that stung her eyes, at the very thought of anyone seeing her bare, naked, upper arms.  

Do I still have insecurities and do I still want things fixed and changed on my body? I sure the hell do. I'm human. But I'm no longer allowing those insecurities to control my life, what I wear, and my overall happiness.  I really wish I was more tech-savvy because at the end of the night, I was out on that  dance floor dancing with my bebe Colin David (Colin Brandeberry) and I was NOT a stiff robot at all.  My friend Rhonda taped it as an IG live on my account, and I would save that video to my computer to upload here for you all to see.  Yep, I would willingly share a video of myself dancing, for anyone in the world to see. -And I would HOPE that those mean girls that made fun of me saying in public comments that I was as stiff as a robot would see it, and see how far I've come and then eat their own damn words! lol  

I'd just leave the link to it here, but IG notified me they blocked the video because of the music playing in the background.  They still allow ME to watch it, I just don't know how to get it saved to my computer. I tried playing around but can't figure out how or if it's even possible. If it IS possible and anyone knows how to do it, please leave me a comment and I'll edit this post, adding the video! :)

I dressed as Miss Peggy LasFrites last night. Miss Peggy LasFrites is the stage name the Queens gave me, for my drag show performance. On the occasions I've been asked to make an appearance or be in a show, I've always stuck to that. Miss Peggy LasFrites will ALWAYS be my stage name forever now lol. Miss Peggy has way less cares than Amy does ....but Amy and Miss Peggy are almost one these days! :)

Stay tuned for more posts on The Fibro Frog. I had just lost my creative zest for blogging.  I had been getting some hate mail.  I had a creep try to lure me to FL to do a seminar. After googling him, he definitely was trying to lure me there with bad intentions,  He had a really scary wrap sheet involving kidnapping, rape, and torture. -I'm afraid I would have been in a real life Criminal Minds show had I not dove deep into this guy before running to FL lol.  I had some crazy lady messaging me over and over calling me by some name that wasn't mine, saying she knew I was really this other person, hiding behind the name Amy ....just super bizarre stuff.  It all just piled on until I just absolutely couldn't bring myself to sit down and create new content.  I'm back though, and I hope all of you are back with me!  There are still over 17,000 froggies over on The Fibro Frog's fb page, so if you're new to TFF and stumbled upon this post, please feel free to join us over there too!  -And if you haven't seen my episode yet, it's S:01 E:03 of Dragnificent, on TLC. The episode is title "Fly, Butterfly, Fly". You really should watch EVERY episode of it, but make sure you have a box or two of Kleenex near by, because every single episode will touch your heart!

#massiveweightloss #bariatricsurgery #excessiveskin #skinremoval #plasticsurgery #MikeKelton #AlkemyX #TLC #Dragnificent #AlexisMichelle #Jujubee #ThorgyThor #BebeZaharaBenet #KimKardashian #KhloeKardashian #KeepingUpWithTheKardashians #chronicpain #selfesteem #selflove #selfcare #skinapron #batwings #PeggyLasFrites #bodylift "mommymakeover




Friday, March 30, 2018

A Dose Of Cuteness

Meet Max.  Max is my mom's new Shi-poo baby.  Max likes to dig holes.  In the mud.  All the time.  This little guy is a mess, but an oh-so adorable mess!  If you're having a bad day, hopefully his muddy little mug will make you smile.


Monday, March 12, 2018

NEVER Give Up HOPE

I've said it before and I'll say it again.  I'll never stop saying it.  NEVER Give Up HOPE.  Without HOPE, we don't have anything!  

Find more support on the blog's facebook page, just click the following link: The Fibro Frog On Facebook


Saturday, January 13, 2018

It's All In Our Heads

So what makes my blog a little different from others out there, is that I always keep it real.  I don't hold back and tell it like it is.  That's why I'm telling you all, Fibromyalgia is all in our heads.  Ok, ok, I know that at least a few people reading this immediately jumped to conclusions and probably started getting pissed when they just read that lol.  I don't mean it in the way that one jumping to conclusions would think.  I'm not saying it's made up or fake, I live with it on the daily.  I know how real it is.  Our pain though, is signals that reach different parts of the brain, then the brain tells us that we hurt in a certain area.


There was a new study published in Scientific Reports on January 10, 2018 that addresses the brain activity in patients with Fibromyalgia.  The study looks at explosive synchronization (ES) as the reason.  What is ES?  Well, you've got me.  I completely understand all of the scientific talk in this study don't really understand it at all.  Even googling ES and wanting to rip my hair out while gouging out my eyes reading for about an hour, I still don't really understand it.  The conclusion is that "we suggest that this could serve as a novel theoretical framework and quantitative approach to modulating chronic pain through the conversion of an ES brain network to a non-ES network using brain stimulation methods."   

This was a small, phase II study conducted at the University of Michigan. Although the study had it's limitations, it gives HOPE that maybe some day a cure will be found.  I'm just thankful that no matter how limited, some research was done.  We need so, so much more research.  If you've been a follower of my blog/facebook page for very long, you know that the lack of money and research into this uncurable monster we live with absolutely infuriates me!  

You can read this study in full, by clicking HERE

At the beginning of every year I always say "Maybe this will be the year that our cure is found."  Well folks, maybe 2018 will be the year that our cure is found.  We can only HOPE and pray.  Yes, HOPE is still my favorite word.  Without HOPE, we don't have anything.  

Love & Gentle Butterfly Hugs To You All

Monday, December 18, 2017

Random Thoughts To End 2017


Well, another year is almost gone.  Us Fibromites still don't have a cure.  There still isn't enough research.  There isn't enough funding for research.  All we can do, is continue to educate and advocate until all of the above changes.  Like I always say, the more people that know the truth about what all we have to suffer with on the daily, the easier it will be to one day have enough funding.  If the wealthy, companies, and corporations don't fully understand how horrific this illness can be, then they won't be as inclined to donate towards the research. 

An apology for my absence most of this year, is needed.  I have to thank a friend of mine for kicking me in the butt, to get me back to blogging again.  I really don't have an excuse for my absence.  I think I was just kind of burned out and depressed.  I had thoughts of "what does it matter", "who really reads this junk anyway", and had received some messages from crazies slamming and blasting me.  In the long run, I've received way, WAY more messages from my fellow Froggies, thanking me and telling me how much I've helped them.  For those messages, I'm grateful and appreciative.

My main message for this entry (besides being a voice for us with fibro and other chronic illnesses, of course!) is to be kind to people.  No matter how we're feeling, we should always be kind to others.  People we just pass on the street, people online  ...on fb, or in a group, twitter, as well as our neighbor or the childhood schoolmate we only see once in awhile.  None of us, no matter how well we think we know someone, doesn't always know everything that person is going through.

I'll give you a couple of examples.  This holiday season has been hard for me.  It's the first time I've lived in this house alone, over the holidays.  I like to be a social person, so for me, this is really hard.  My Christmas tree broke last year and I had to throw it away.  -I can't have a real tree, because I'm allergic to them.  I didn't even bother to get another tree, thinking "Well, I'm here alone anyway so what's the point".  You all were here on the blog with me through my marriage ending almost 6 years ago.  I've remained single all of that time.  None of my "babies" live at home anymore.  No real point in really decorating this year.  I DID borrow a small tabletop tree from my mom though, and decorated my big 6-person dining room table.  Because let's face it, those 6 chairs and that table aren't being used anyway.  Someone giving me a simple smile or nod of the head in the grocery store, a complete stranger, makes my day.  I've posted before about how I try to make a point to smile and say hi to at least one elderly person that's walking alone in a store because you never know how it may help them.  Now, it helps me as well.  It makes me happy and feel good. 


The photo above, is of my oldest son and my youngest daughter.  In a few months, he'll be deploying to Iraq, for the Army.  He won't admit it, but I know that he has a lot of stress on him with knowing he'll be gone for a year.  He'll be gone, yet he'll still have his house payment, truck payment, house & car insurance, etc to be paid back here at home.  Worrying about him being in Iraq, is also a stressor for me, as well.


This is my youngest daughter again, with my dad.  One of my favorite photos!  My daughter, at the mere age of 22, has dealt with way more than she ever should have.  Her fiance (now EX-fiance) had been mentally abusing her for almost 2 years.   This is the same daughter that I've posted about having PCOS since she was 15.  Just as depression is a co-morbidity of fibro, it's also a co-morbidity of PCOS.  The mental abuse took it's toll until she spiraled into a deep depression where she didn't even want to live any more.  Knowing she finally had to remove herself from the toxic situation for her own health, she left him just over a week ago.  It wasn't as simple as that though.  When she tried to leave, he physically abused her.  Choking her, hitting her, stabbing her in the arm with a key, throwing her around the apartment and into things.  I thank God that she was finally able to get away without broken bones or him causing death, even.  

A stranger on the street would look at her as a beautiful, young, fun-loving girl.  They wouldn't have any idea the emotional stress she's under at this point.  There is just no way for us to gauge what's going on in someone else's life.  You say "Oh well Mr So & So is just a grouchy old man" or "Man I can't stand that girl next door" but do you know why they may be grouchy or mean or defensive?  You don't know what has happened in their past or may be happening on a daily basis to them right now.  Instead of being mean about them, or ignoring them, or trash-talking them, try giving them a wave, or a smile, or a nod, or even a simple "hi".  


It kills me to know what all my beautiful girl has endured.  Always, always be kind. You may find yourself needing someone to be kind to you someday.

As you can see, I've been stressed from the day to day happenings in my life.  We all know what stress does to us.  -It's a trigger for a flare.  I've been doing pretty good though despite everything.  I've had a few pain flares, and lately I've been fighting an insomnia flare.  All of this just makes me want to find that cure even more!

My final words for all of you this December are to have a safe, pain-free, Merry Christmas.  To always take every opportunity to educate someone about the real life of having fibromyalgia, to advocate for research and a cure and finally the words you've heard 1,000,000X, my motto for this blog, .....Never give up HOPE!   

Gentle Butterfly Hugs to Each of You!