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!!

Credibility

Credibility.  It's such a simple looking and sounding word.  "The quality of being believable or worthy of trust."  Even the definition sounds simple, doesn't it?  It's so much more than that, though.  It's really so in depth, that it's mind boggling.  

How do you decide if something, or someone, is credible?  Does something have to be tangible? Do you have to be able to see it or feel it, to believe in it and it's credibility?  What about God? Or religion in general?  You can't see God, but a lot of people believe in Him.  A lot of people believe in the bible.  What lends credibility to the bible, for people to believe in it?  They just do, right?

What about the credibility of people?  Or of illnesses?  Or of people who have illnesses?  What makes their feelings, their symptoms, real and credible?  Many people will answer that question with "Well the doctor saying so makes it real and credible.  Duh.  The results from their tests make it real.  What a dumb question!".  No, not really. 

Let's pretend we have four people standing side by side.  They're lined up on a stage, in front of a large audience of people.   First, we have a person who has cancer.  They have patchy hair on their head, and they're pale and have dark circles around their eyes.  They look at you and say "I don't feel good.  I'm sick to my stomach and my body hurts.  I'm really in a lot of pain today.  I'm just completely exhausted.  I have to go lay down now".  

Next, we have a person who has MS.  They're standing there with a cane.  Their eye is watering.  They say "I'm just coming out of a flare.  My face is numb, which is making my eye water because it feels funny to it.  I'm weak, and have to use my cane right now to walk.  I'm just so tired".  

The third person says "I have fibromyalgia.  My body feels like I've been beat with a baseball bat.  It hurts to turn my head, or raise my arms.  My legs ache and my back, hips, and legs hurt so bad that I can barely take a step today.  I woke up feeling just as exhausted as when I went to bed last night.  But of course, I couldn't even fall asleep until close to 5am due to the pain and insomnia that fibro causes. I don't have an appetite, and when I try to eat, I feel nauseous".  

Lastly, there stands a person who suffers from severe depression.  They say "I feel worthless.  I don't feel like I have anything to live for.  I just want to sleep.  I don't even have an appetite any more. I want to lay down and sleep and never wake up.  I hurt in my heart.  I want to be happy.  I want to go do things and have fun, but I just can't.  I don't want to live like this any more".  

After looking at these four people, and hearing what they have to say, the large audience is asked to vote as to which one of these people is the sickest and to write why they believe the way they do.  What do you think the outcome of this vote would be?  Which person is the sickest?  Which person do people generally feel the most sorry for?

Of course I haven't conducted this experiment.  This is just all personal opinion and perspective from what I've seen and heard in the world of illness. my personal conclusions though, are of course the person who has cancer is the one that's going to get the most votes.  Next, the person who has MS will get the 2nd most votes.  Even though the person who suffers from severe depression may receive comments on the forms such as "It's all in your head." ..."You could be happy if you'd just let yourself be" ...etc, they'd come in as the 3rd sickest in my opinion, and last place would be the person who has fibromyalgia.  The fibro person may garner comments such as "Quit being a hypochondriac" ...."It's all in your head" ...."Your illness isn't that bad" ...."If you were really that sick, you'd be able to tell it just by looking at you" ...."Fibromyalgia isn't even real.  It's just something someone made up to shut up all of the hypochondriac's out there" ...etc.  I could go on, and on with possible & probable comments that those cards would receive.  

My question is, what makes the person who has cancer or MS more crediable as to how they're feeling than the person who has fibromyalgia or depression?  All four of these illnesses are terrible.  All of them are their own form of a living hell.  They're a form of personal torture and take away from a good quality of life.  But why do people sympathize with the one who has cancer and the one who has MS, but doesn't believe the one who has fibromyalgia and the one who has depression?   

Tangible results are why.  Blood tests, xrays, MRI's, CT scans, PET scans, scars from surgery.  All show definitive results that something is wrong inside of the person.  Visual accountability.  They can see with their own eyes, the balding head.  The dark circles.  The scars.  For some reason, in the area concerning a person's health, people are hung up on the tangibles.  If they can't see it, they don't believe it.  In the minds of most people, if it can't be proven, beyond a doubt, then it doesn't exist.  It isn't true.  

Why people can believe in certain things that they can't "see", such as God and the bible, but can't believe in another person when they say how they feel, is beyond me.  It really saddens me and hurts my heart.  Everyone's pain is valid.  Everyone's pain counts.  Everyone who is suffering, no matter from what, deserves to be heard and to be believed.

This is one reason why research for fibromyalgia and other chronic pain conditions is so very important. New research has been pointing us in the right direction as to "proving" fibromyalgia is real, but there's still so much that we need to learn.  To make our illness credible ....to make our voices credible, we need to learn so much more.  When people do not believe us, it makes it so hard to garner the support and funds for further research.  Without that research, we will never be credible.  We're going to have to find the "why" of fibromyalgia, to be believed.  

I spent a few days last week with a person who has MS, and a healthy person, both at the same time.  The healthy person went on and on about how terrible MS is.  How I'm sooooo lucky that I "just" have fibro and not MS or cancer, or something else that's horrible.  Well, you know what?  Having fibro is pretty horrible too in it's own aspect.  It's not much fun to feel like you have a sunburn all the time on your skin.  It's not much fun to feel like you have the flu every single day of your life.  It's not fun to be in a flare where you honest to God feel like someone took a baseball bat and beat the living crap out of you the night before.  I don't like saying "ow" every time I go to stand up, or move my head.  I hate being so exhausted that I sit and expend energy I don't have to spare, crying, yet if I lay down to sleep I just lay there.  Then I toss and turn because if I lay on one side for a bit I start to hurt.  So I say "ouch" as I turn over because it hurts to move my body to turn.  Then I repeat the process a few minutes later.  Over and over for endless hours at a time.  When I wake, I feel just as tired as when I went to bed, because my brain doesn't go into, or stay in, a deep restorative sleep pattern.

When I vocalized that fibro isn't a picnic either, I was met with "Maybe not, but it isn't as bad as what poor S goes through all of the time.  She's been to four different doctors who have all proven that she has MS".  Hmmm.  Really?  I've been to several different doctors too, who all say I have fibromyalgia.  It may be in different ways, but how can you say that what she has affects her worse than what I have?  How can you discount how my body feels?  What makes her more credible than me?  

I felt like a failure, because I just couldn't get her to understand about fibromyalgia.  She just wasn't open to being educated about it.  I had to keep reminding myself, that she doesn't know much about fibro.  She doesn't know what the latest research has shown.  She doesn't hear about fibro in the news, or read about it in the papers.  We in the fibro community haven't made a big enough deal about it, for a long enough period, to demand the media attention that fibro deserves.  You see/read stories all the time, front page news, about someone with cancer.  Or some new research or therapy on the cancer forefront.  You hear/read about MS.  Honestly, how often do we hear/see/read about fibromyalgia?  Not very often.  

As a person who suffers from almost every co-condition of fibro, I feel personally responsible for getting our voices heard.  I feel personally responsible for trying to educate those who doesn't have a clue what fibro really entails.  I also feel responsible for letting every single person out there with fibro know that I'm here for them.  That they aren't alone, and that I believe in them and their symptoms.  I feel like it's up to me, to do my part in trying to educate the media and try to get them to run with the story.  If that doesn't happen, then we in the fibro community will never have the credibilty that we deserve.  Without that credibility, than we'll never garner the support financially for further research to find our why, our how, and our CURE.  If a cure can't be found, then we at least deserve a treatment plan that works universally for all of us and gives us back some normalcy.  We deserve that every bit as much as someone with cancer, or MS, or depression, or Lupus, or any other miserable, lousy disease out there.  We must start demanding the respect and credibility that we rightly deserve.