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Starting Over…

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This is the hardest thing I have had to do in my entire life.  A lot of these posts were made while I was in school.  Well, school fucked me over so I cannot finish my 20 credits it will take to graduate.  They are calling me wanting money and frankly that pisses me off.

Whatever you do, do NOT and I repeat NOT attend a for profit college, they will rip you off.  Not by hundreds of dollars, but by 10,000 dollars…  From nowhere.  All of a sudden I owed this money and no one at the school will speak to me.  Shocker.

This happened months ago, so my anger is nearly gone.  I am just sad and broken.
I have fibromyalgia and from what I just read, it won’t matter that I go to school because I am going to forget it all anyway.  When people have FMS their grey matter melts away.  I am looking at pissing my diaper by the time I am 60 and I won’t lie, that one is a bit more difficult to get over.

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It would be different if my partner in life (husband) would be supportive, but no such luck.  He refuses to do more research and insists that I am wrong.  Others just tell me that if I do brain exercises it will help.

The thing is, I read the articles, I did he research and I am screwed.  I wanted to leave my house.  I wanted to walk away so that they don’t have to watch me lose my fucking mind.  I got screamed at, that I was selfish.  I am not so sure that I cannot be selfish here..  I am losing my fucking mind.  How many hugs do you think my husband gave me?  One..  One fucking hug and I had to ask him for it.

I don’t have anyone to turn to.  No one wants to talk about a thing that is so terrifying.  No one wants to know that I am losing it, mostly because they are so scared that it might happen to them, I suppose.

I am close to suicide every minute of every day.  I don’t want to shit my pants.  I don’t want some stranger wiping my ass for me.  I can’t.  I won’t.  I don’t know what the answer is yet, but dammit, regardless of what it is, I will make this stop.  I refuse to live in a diaper.   When the very people screaming at me not to go, I wonder how they would feel if they were in my shit filled velcro shoes.

I am only 40 years old.  Fuck me…  I gave my life to my family and my kids and my husband and now I am mostly alone in the knowledge that I am losing it because no one wants to talk about it.

I am up in the air when it comes to making a decision.  I know that I am losing my shit now that I know the truth about FMS.  I have to try and calm, down and make a decent decision.  I love my family so much, but I know that all they want is the old Tammie back.  I wish she existed.

 

 

 

Accelerated Brain Gray Matter Loss in Fibromyalgia Patients: Premature Aging of the Brain?

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Accelerated Brain Gray Matter Loss in Fibromyalgia Patients: Premature Aging of the Brain?Anil Kuchinad1,2, Petra Schweinhardt1, David A. Seminowicz1, Patrick B. Wood1, Boris A. Chizh4, and M. Catherine Bushnell1,2,3+Show AffiliationsThe Journal of Neuroscience, 11 April 2007, 27(15): 4004-4007; doi: 10.1523/JNEUROSCI.0098-07.2007AbstractFull TextFull Text (PDF) Next SectionAbstractFibromyalgia is an intractable widespread pain disorder that is most frequently diagnosed in women. It has traditionally been classified as either a musculoskeletal disease or a psychological disorder. Accumulating evidence now suggests that fibromyalgia may be associated with CNS dysfunction. In this study, we investigate anatomical changes in the brain associated with fibromyalgia. Using voxel-based morphometric analysis of magnetic resonance brain images, we examined the brains of 10 female fibromyalgia patients and 10 healthy controls. We found that fibromyalgia patients had significantly less total gray matter volume and showed a 3.3 times greater age-associated decrease in gray matter than healthy controls. The longer the individuals had had fibromyalgia, the greater the gray matter loss, with each year of fibromyalgia being equivalent to 9.5 times the loss in normal aging. In addition, fibromyalgia patients demonstrated significantly less gray matter density than healthy controls in several brain regions, including the cingulate, insular and medial frontal cortices, and parahippocampal gyri. The neuroanatomical changes that we see in fibromyalgia patients contribute additional evidence of CNS involvement in fibromyalgia. In particular, fibromyalgia appears to be associated with an acceleration of age-related changes in the very substance of the brain. Moreover, the regions in which we demonstrate objective changes may be functionally linked to core features of the disorder including affective disturbances and chronic widespread pain.pain fibromyalgia functional disorders voxel-based morphometry brain anatomy agingPrevious SectionNext SectionIntroductionFibromyalgia is a disorder of unknown etiology that is characterized by chronic widespread pain and often accompanied by a variety of other symptoms, including sleep impairment, chronic fatigue, affective disturbances and altered stress responses (Wolfe et al., 1990). Although the disorder has been dismissed by many physicians as purely psychological, recent neuroimaging studies show alterations in sensory processing (Gracely et al., 2002) and neurochemical abnormalities (Wood et al., 2006), indicating that fibromyalgia is associated with alterations in the brain’s neural functioning.Changes in brain morphology have been described in chronic pain conditions (Apkarian et al., 2004; Schmidt-Wilcke et al., 2005, 2006), chronic fatigue syndrome (Okada et al., 2004; de Lange et al., 2005), and posttraumatic stress disorder (Villarreal et al., 2002; Corbo et al., 2005; Chen et al., 2006). Because fibromyalgia shares commonalities with these disorders, we hypothesized that fibromyalgia might be associated with neuroanatomical abnormalities as well. Specifically, we sought to determine whether fibromyalgia patients have demonstrable reductions in brain gray matter, particularly in regions involved in pain perception, pain modulation, and stress.

Source: Accelerated Brain Gray Matter Loss in Fibromyalgia Patients: Premature Aging of the Brain?

More About our Brains

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More About our Brains

I know that it is naïve to think that the boys will be ok with that.  One the flip side though, they will ultimately be better off without me.  The three of them are a great team and instead of being held back because their mom is broken, they should thrive and accomplish many things.

I am disabled.  I CAN’T go to beach.  I can’t sled, I can’t walk, I can’t sleep..  It goes on and on.  My grey matter is disappearing so quickly that by the time I AM 60 I will be shitting myself.  Who would continue to fight a condition that rules your life when the end game is shitting and pissing myself before I am even old.

Husband and children think that I am strong and that I can deal with this.  Thing is, no matter how strong I am, there is nothing I CAN DO to stop the deterioration of my brain.  All my tools that took me years to develop; you know, strategies on how to deal with FMS and all it entails.

I had a decent hold on the thing.  There have been many situations where I can participate because we find something I am able to do.

My own mother..  Instead of showing any remorse or sadness at my fate said she simply doesn’t believe me.  Because the bible told her so.  It will be a while before I speak to her again.

My kids hugged me, everyone else tells me I am full of shit.  Please check below for the articles on this very thing.+

http://www.jneurosci.org/content/27/15/4004.full

http://www.examiner.com/article/brain-grey-matter-atrophy-seen-fibromyalgia

https://www.google.com/search?q=fibromyalgia+grey+matter+loss&tbm=isch&tbo=u&source=univ&sa=X&ved=0ahUKEwjKwtPp2afKAhXKJR4KHZMyCLoQsAQIPA&biw=1366&bih=643

Fibromylgias Big Dark Dirty Secret

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When I started noticing symptoms of FMS I was in really good shape.  I was a dancer and I worked full time managing a department at Walmart (don’t judge me).  I was walking 5 to 10 miles every day.  I had a full and happy and healthy sex life.  I had the ability to go to a get together for my kids.  I could drive without getting lost every two minutes.  I could play games, like volleyball and kick ball.  I played a djembe drum.  This information I just found has rocked me to my very core.  I am sharing because it is too important not to share, at the same time this is information that I didn’t want.  I wish I didn’t know.  If you think it might fuck your world, please stop here.  I promise, it is horrible news.

I list those things because I originally lost the ability to do any of them.  It has taken me a week to reschedule a psych appointment.  Don’t get it wrong, I still haven’t called them, but I got a Xanax from a friend so I could do that very thing today.

The thing is, FMS has stolem my life.  It has taken everything from me.  My one consolation was that I have spent years since I was diagnosed overcoming the physical limitations/  I did this to the point that I had learned to live with FMS.  I grabbed my metaphorical balls and I got it done.  I can be in public sometimes.  I can drive with a GPS. I can go to things for my kids, I can even play my djembe from time to time.

It is all about rules, and learning about your condition.  It is all about smiling through the pain and moving on with your day.  Hell,. It has taken me months to write again.  I want to write every single day, and that has been my goal.  Up until I learned about this other thing I thought I was doing ok.  I was living a little bit.

Thing is, this new info doesn’t make it harder to do those things, it just makes it break my fucking heart because I know now…  I hate it..  but I know.

See, grey matter is your brain.  In the elderly it presents as dementia when their grey matter is gone.  In fibro patients, our grey matter is disappearing at a rate 3.3 times that of a “healthy” person.  This means that YES you are losing your shit.  Our brain fog?  That is a fibro thing in the sense that it happens because our brains are literally disappearing.

I have been utterly fucked up since I found this out.  I haven’t been able to keep up the façade of being healthy and happy.  When I tell people?  No one knows what to say.  It is too horrible to say anything.  Others tell me to do brain exercises..  Which I do, even since the Day I Read the Fucking Article.  None of those things are going to help.

I am crushed..  Splattered.  If someone stood in front of me and called FMS fake I think I might end up in jail.  I am so angry at this condition.  Haven’t we lost enough already?  I mean come on.  What the fuck did I do to deserve this?
Link to the article:   http://www.jneurosci.org/content/27/15/4004.full

 

Are You A Useless Lump of Skin and Bones? I’m Sure as Shit NOT.

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Are You A Useless Lump of Skin and Bones?  I’m Sure as Shit NOT.

This particular piece is about what I have learned concerning, well, learning.  You see.. As most of you warriors know our bodies are broken.  Our abilities to do almost everything are gone.  Leaving us a seemingly useless lump of skin, bones, and fat.  I decided a while ago that I was going to fight that every damn step of the way.  I fight it every day, but I relish the fight and I am strong like an ox because of it.

I had to let go of a few things.  My pride, for one.  When you are in the middle of a crowd and you are going down because your legs won’t hold your weight any longer.. well you got to laugh that off.  My husband and I make jokes when this happens.  We say “it’s happening” like the bride in Bridesmaids movie when she shit in the street.  It makes us laugh and it makes everyone else figure that we are just drunken idiots.  I had to stop caring.

We all do this, we all say “I don’t care what people think of me” but then deep down inside we totally care.  I used to lie about it all the time.  Once I got fibro and it got worse..  it stole my life.. it stole my happiness, it ruined everything.

THEN, then.. that is the moment when I truly realized that my suffering gave me a pass.  I don’t have to give two shits what anyone thinks of me.  I LIVE in pain.  My life is pain.  If you don’t like me then you can piss right off.  It’s a freedom unlike any I have known before.  It’s a huge step in learning how to make your life the best it can be now.

Tips For The Family

I have written some about family.  Husbands, kids etc.  How to deal with them is as important as how you deal with your personal stuff that is just about you.

Concerning your family, like I said before, unless they ask you just continue about your day as you were, don’t talk about how you feel (this will create a strength unlike anything you can imagine)..  However, this is an extra tip. They know that you are sick, tell them something positive or funny..  even if you are flat on your back on the couch.

Add little things to what you do.  For example, I stopped all housework, it hurts.  So, I did some dishes one day.  Didn’t point it out.  But they notice, and they appreciate it AND it is proof that you are trying.  It doesn’t have to be housework, there will be moments for you to try something you thought you could no longer do.

Try it.  I am crafting again.  Painting, writing, moving around more, pinterest is your friend, make some stuff that you like looking at.  DO NOT create for anyone but yourself.  Make what YOU like to look at.  It helps build character and you learn things about yourself.  Maybe you end up making awesome stuff and you can hang it on your wall etc.

WARNING…  Sometimes you really literally cannot do a thing, but that doesn’t matter.. what matters is that you tried. Do not hurt yourself, that is NOT what I mean here.

People who have chronic pain avoid doing things because it hurts.. sometimes we can do a different version of a thing and still feel a sense of pride and accomplish what we thought we never would again.

This is not just for show either, this is growth within you.  This is you trying.

The final anecdote I have today is this one.  I have a game on my phone that I played for a couple of years straight.  Whenever I was waiting or whatever.  I have logged an embarrassing number of hours playing this game.

I stopped for a few months.  Actually, 6 months..  stopped playing for that long.  I just started again and I am using a totally different strategy than I did before.  I mean, it is like a different game, I am playing that differently.  I am winning a lot more.  The new strategy should have been my strategy all along.

These are chairs that were baby blue, so I painted them…

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You are probably wondering why the hell I am talking about a game.  Well, the thing is..  the strategy part.  It fits with the points I try to make with you warriors.  Give yourself some time.  Think about what you used to do.  Cry it out if you have to..  then try it again with a whole new strategy and you never know what you might end up finding that you can do.

I Want to Start a Commune for People With Fibromyalgia as we are the Only ones that get it.

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I have several topics I wanted to cover today.  I have started taking my notebook with me everywhere so look out warriors…  I have a lot to talk about.  Today I want to talk about injuring yourself and your relationship with your family.  This is obviously two very different topics, but they run together in my mind.

First, injuries.  I fell last thursday and rolled my ankle really bad.  I stood up, added it to the mental pain that I ignore, and continued on my merry way.  See, as you warriors know, we live in such extreme pain all the time, the new stuff doesn’t even phase us.  (mostly)  This is dangerous and we need to be careful.

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I hate the doctor, I know you hate the doctor.  I LOVE my doctor, but I still hate going.  luckily I have a good one.  Now, my ankle kept swelling and wasn’t getting better at all.  I went to Xray and it isn’t broken but it is on of those sprains that are worse than a break.

If I had listened to the voice in my head, the one saying “Meh, add it to the list” I would have had another body part that hurts forever and warriors, dammit if we don’t have enough of those.  So, even if you feel like an ass hole, GO TO the DOCTOR..  You can prevent new pain if you just go.

FAMILY TIME

Now, I am giving advice that took me years of fights and pain and anger and hurt feelings.  Hopefully, you will listen to this advice and it will resonate enough with you to make a difference.

When you get fibromyalgia you are like a leaf blowing around down the street with absolutely no idea where it is going or what it is going.  All the medical texts in the world do not help.  Trust me, I have a bachelor degree in psychology and I can explain what goes on in your brain, but that doesn’t make it any easier to understand.

Thing is though, you can live with it.  You can learn that even though you feel like your body is a giant wrecking ball of anxiety you can find a way.  I did and if I did, anyone can.  I should add I have horrible days.  I am NOT better, I just handle it in a way that works for me.

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I cannot explain why in the beginning everything is fucking terrifying.  I remember my husband making me take my son places because he figured that if I drove I wouldn’t be scared any more.  He was so very very wrong.  Not being able to deal with arguments from your kids…  damn, that needs a new paragraph.

Before you reach a place of acceptance your kids are going to drive you crazy.  Deal the best way you know how.  I would try to talk, that is what always worked for me. But once the fibro was bad I couldn’t make the right words come out.  It felt like I was speaking Arabic and they were speaking english.

That was when I ran away and stayed in my room.  I was not effective as a mother and that made me die inside, but they were better off that I hid until I got my self back..  well the new self that is.

The same thing can happen with your husband.  It is impossible at times to make the words in your head come out of your mouth.  I type..  it is why I write.  I can write fast enough to keep up with my brain.  When I try to have a conversation I find myself stumbling over words and if I am angry it is even worse.

If you start having the conversation with your loved ones and you find yourself saying “I just don’t understand” a lot, walk away, nothing is going to get accomplished in that conversation..  Trust me I have tried..  bad idea..  walk away.  Explain, you are not turning your back forever, you just need some time to cool down.

When this is happening, walk away.  I know that we should not walk away from arguments, but they were not talking about fibro.  Take a minute, type out what you are trying to say.  I should add, this was the absolute hardest part of my journey.  Learning how to communicate with my loved ones was a long arduous process, but you can do it.

Now, to the pain and talking about fibro and what you can’t do..  do other things.  On your own. try things with your family, plan outings where you are going to be able to sit down or rest.  There are a million things you can still do.  I promise.

I went to Artscape in Baltimore on the hottest weekend we have had all summer.  I had my cane.  I sat a lot.  I was very hot, but I swore before we got out of the car that I WAS doing this.  I WAS going to have a good time. I had a blast.  3 miles that day, with a LOT of water, shade, and breaks..  but not only did I do it, I had a really good time.

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Live, love, and fight for your life, you can still have one.

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The Fibromyalgia Mystery Solved

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The Fibromyalgia Mystery Solved

I will start this discussion with a question.  That question is this..  How hard do you work, every single fucking day, just to keep a fake smile on your face?  How hard is it when those closest to us hurt us on a fundamental level?  I want to tear my own hair out.  I have at times.  As well as the whole beating myself in the sides of my face.  I admit it.  I did that.  life spirals out of control and we want a normal life for our partners and our kids but DAMMIT, sometimes I am losing my shit.

Now..  I know what most of my triggers are.  I know when to walk away.  I know when to keep my mouth shut, even if I have to hold my lips together with my fingers (and I have done that as well)

By design fibro is destined to turn each of us into a control freak.  We cannot help it.  Our neurological systems are broken, all the way broken.  We have to know what our triggers are, we have to stand up for ourselves.  We have to be ready if we are going to fall because of a loud bang, or yell because someone thinks it funny to scare you..

We have to be on guard at all times.  We even have to practice what the hell we tell people when we are acting like a fucking insane person; and that is almost the hardest part.

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I am years in.  I have had a lot of practice.  The one thing I can tell you is that those closest to you do care, they are just tired of hearing you talk about it all the time.  I know..  sacrilege that I said that.  I know that.  I also know that I am my own psychological study and the minute I stopped talking about what hurt that day, the minute that I stopped saying, “you think that hurts…” the minute I started to give them me..  just me, they responded.

Sure, in an ideal world our partners would ask a million times a day how you are.  Once you stop talking about how you are, they actually start asking.  In an ideal world we wouldn’t have this shit..  but we have it.  Hold it, let it build you up.

Today, I am knocked on my ass.  I am out of school not by choice and my world is pretty shattered.  I cleaned my fibro pile of stuff and most of it was my school work.  I want to hide in a closet and cry and cry because I have no idea what is next for me.

I would like to think that my husband would come home, realize how hard my day was, and give me a hug.  Let me tell you, I am more likely to hit the lottery.  I have made my peace with that.  We struggle enough, the last thing we need to worry about is training our partners how to treat an ill person.

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Live Love Fight like you fucking mean it.

Oh, and yeah..  by the way; I cuss.  I say “dirty words”.  I had a group on facebook delete my blog and yell at me for fucking curse words.  I promptly told them that I have this disorder that stole my life and causes me to be at war with my own body, the very last thing on my mind is whether or not you approve of my language.  She said she would pray for me.  I told her that I am great and she should pray for the ladies that don’t get good advice because it has a few F bombs in it.

I get it if you don’t like the language.  I respect that.  No one is making you say it.  Ah well…  My advice gets out there.  Enjoy and please friend me on facebook and follow my blog.  My heart and my love are in every one of these words.  I give freely of that in the urgent desire to help those that I can,.

Starting Over and Over and Over and Over. I am tired. I thought I wanted to give up.

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Starting Over and Over and Over and Over.  I am tired.  I thought I wanted to give up.

I barely remember what it was like before fibro.  I know that I could take a shower and not need a nap afterward.  I could keep up with my friends and my kids when we went out,.  I could ride a roller coaster.  I could run.  I could create, and I could find a job that suited me.  All of those things are gone.  You don’t appreciate what you can do, until it is all taken from you/

I compensated.  I started to attend university.  I even double majored in sociology and psychology.  I am 20 credits away and suddenly I don’t get to finish unless I give them $10,000.  Yeah, you heard me..  10,000..  Yeah, like I have that.  I have never in my life had that much money.

It was disheartening to say the least.  I was suicidal.  School is what made me feel like a human.  I figured I could graduate and help others with my knowledge and skills.  I won’t be graduating now, however I am finding more and more that the credits are all that I need.  That is the one piece of good news that came out of this.

The other bit of good news, for all warriors is that it is possible to lose something so big that it was your life and find your own way to your next thing.  We have to keep our brains working.  We have to stay as creative as possible.  Seriously, find some sticks and hot glue them together..  who cares what it looks like?  You had fun doing it.

I still fight the pain in my gut.  I gave the school 5 years of myself.  My family is supportive.  There have been many times that I have had to do school and missed some of their stuff.  I can get my transcripts and finish class by class (yes, at a totally different school).  I have a plan.  I am just waiting for the fire under my ass to get myself past this tragedy.

I laid in bed after I found out and I went back to my old ways..  fantasizing about how I would kill myself.  I know I am a wife and a mom but that doesn’t come into play when I go to these dark places.  I truly figure they are better off without me.  Shit, I worked my ass off and I can’t even make college happen.  I can’t stay in this place for long, it seems like an insult to the universe.  I would never do it..  but the fantasizing has gotten me through some dark places.

I have things to offer.  I help people.  I have been given insight and gifts that will help many.  I recently found out that I have more to give.  I am not worthless, I am simply being toughened up.  I am learning how to fight for what I want.  I am learning that I am worth it.

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So are you.  Right now, every time I start to think negative thoughts I find something to do.. There are a million things you can do.  Not for sale..  just for you.  One step at a time, one project at a time.  That is the other part.  Instead of looking through the mountain that is my craft stuff, I know what it is that I want and I get the stuff for the current project…  then I don’t leave piles of craft supplies all over the house, with no idea what the hell I was thinking anyway.

The whole point here?  You can’t give up.  Life is going to hit you hard, it just does when you are already down.  I don’t know why, but I do know that I have to take this time to grow and learn and make myself even stronger.  Yeah, it feels like “surely this is the last test and I shall rest and be ok for a while” but guess what?  It doesn’t.  However, it is all in how you handle it.

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I cried with the school thing..  I took a month worth of xanax in a week and a half.  I was wrecked.  I didn’t think I could come back from this one.  In some ways I think I haven’t.  I am more confused than before.

Water is healing, cleansing and amazing to meditate in…  this is me just the other day..  it was the bump I needed to get myself back in the game.

I can’t remember the day or really random things that I should know.  BUT I am back and I am painting a chair and I am. once again, working the baby steps technique.  Thanks for listening..  always remember you are not alone.

Friend me on Facebook…  PM me..  I am good at what I do and I am here to help if you need it.