Tag Archives: causes

I hurt so Badly. Why Can’t you be Kind?

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I hurt so Badly.  Why Can’t you be Kind?

Hello fellow warriors and friends.  I write this today as a result of the things that went on yesterday here at my house.  I live in the country, with grass and hills that make even a walk outside impossible.  I can go outside and sit on my porch (I am right now) but I can’t go anywhere else because I still don’t have my car.  I am miserable and getting worse by the day.  Yesterday I broke.

They are trying.  See, I live with men.  Two sons and a husband.  They are trying to get our other two vehicles on the road but because of how expensive that is in Pennsylvania it is taking months before we have the money.   So, I am stuck here.  I have been for years.

I don’t complain much.  According to my husband, I am some sort of crazy person who loses my shit all the time.  Same with my oldest son.  The things is, though, is that I do not.  Yesterday I cried because I am so sad and miserable and I have been trying to hide it from everyone, especially myself. The problem is that every time I have a feeling about something I am “crazy”.

I have been binge watching television.  That is about it.  I cruise around my laptop to facebook and reddit.  I have been desperately trying to distract myself, to no avail.  I still feel like a miserable lump.

Now, I know that there are a lot of women with fibro who have no one.  Or whose husbands are just horribly mean and abusive..  No way is my situation worse, or even as bad as that.  But the reality is, is that everyone has their own demons; they have their own struggle.  My struggle is that my husband has no compassion.

He admits that he has none.  When I was crying yesterday because I am so miserable, sore, and bored he got mad at me.  He gets angry when I cry.  He is never sweet, or caring.  In those dark moments I am on my own.  It would be easier if I didn’t know for a fact that he is capable of it.

This is not to say he doesn’t help in other ways.  He is wonderful.  Him and the boys do their own laundry, they help with dishes.  I know that for the most part I am blessed.  I make sure he knows I feel that way nearly every day.  I do NOT take that for granted.

But the dark times?  The really dark times, when I feel like I am slipping again.  When I am wondering if I still want to live at all?  In those moments I need him the most and he is just angry.  I told him he couldn’t understand what it is like to be housebound and that made him mad too.  He won’t help me because I said that.  That is the excuse this time.  Of course he can’t understand, he has NEVER been housebound.  I don’t understand what he does at work every day..  at all..  how can this be the reason your shutting me out and hurting me worse?

I don’t know if anyone will read this..  I just needed to get it out.  I am so sad and I want my husband to hug me when I cry..  how is that too much to ask?

So, right now I am broken.  I am desperately trying to pick up a craft or color, but then I just don’t..  I keep doing the same thing..  over and over.

I am really angry with myself.  I am angry at so many things.  I am pissed that I cannot walk around my own lawn.  I miss my old life sometimes.  These are the reasons that I am freaking out.  This is permanent and dammit, I am going to suffer and break and I need my partner to help me put myself back together again.

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Fibromyalgia: The Thing we Don’t Talk About

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Fibromyalgia:  The Thing we Don’t Talk About

Ok.  One day while I was on Christmas vacation I read an article on my phone.  It was titled “Fibromyalgia and aging” so I wondered what I was in for and I read it.  Thing is, it talked about our grey matter in our brains.  It wasn’t about aging and what fibro does.  It was about how our brains are aging.  Everyone loses grey matter, we lose it at a rate that is 3.5 times faster than healthy people.

I tried to off myself.  I thought that this is it.  Here I am fighting this nightmare of a condition every single day and now I find out that I am going to end up like my grandmother..  only WAY earlier than it hit her.  I spent days in a mental hospital and they let me come home.  I am no longer a suicide risk.

How have I dealt with it since?  Well..  I really haven’t.  It’s still there.  This huge fact that I can’t even talk to anyone about because it is too awful and no one knows what to say.  It’s like when someone dies..  what can you say?  Sorry?  That sucks?  None of those things seem right.  Certainly, none of them help.

I have to help myself.  I have to stop the damaging thoughts.  I have to remember that this is out of my hands and I have years left.  I can spend those years freaking out about losing my shit or I can spend them having as much fun as I can possibly have .  I chose the second.

I don’t have to worry about damaging my brain..  it’s doing that all on it’s own.  That is freeing.

Here is the thing.  I don’t want anyone who reads this to get to the point that I was at.  Maybe this will make you cry.  Maybe it will blow your mind, or maybe you already knew.  Either way, DO NOT let this make you suicidal.  First of all, it’s a lot harder than you think to commit suicide.  Secondly, it is selfish as hell and you should look forward to the times ahead.  It can be happy.  You can have fun..  you just have to figure out how fun can happen around your symptoms.

I have noticed when my brain fog is bad I am easier on myself about it.  Fuck it..  I forgot words, or that I had something cooking in the oven..  at least I am still functional..  if not highly functional..  I still got it.

Never forget that every single day counts.  I have had writers block because this is the story that wanted to come out. I had to write and share this because we should all know everything we can possibly know about this fucking shit we call fibromyalgia.

I didn’t want to write this, because I don’t want to do to someone what I did to myself.  Please don’t go there.  I won’t say some shit like, “you have so much to live for” because let’s be honest, it sucks to live with this shit.  On the other hand, I love my life and you can love yours too, you simply have to work it.  Do what you can when you can.

Change your expectations of yourself.  You aren’t the same and it is okay.  You rock just like you are and all you have to do is let yourself know that.

I love you all and please feel free to message me if you wanna chat.

 

 

Forget Everything you Thought you Knew… Inspiration

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Forget Everything you Thought you Knew… Inspiration

Some moderators on different pages make me feel like I am on some sort of mission to “promote” my blog.  No. Promotion involves money.  I don’t want any of that.  I just want to help.  I won’t lie, I love seeing my stats when they are jumping higher than I could have imagined…  only because that is more people that I was able to help.  Here is my reaction to jumping 200 posts overnight

Now, let’s get down to the meat and potatoes of what I really wanted to say in this post.

I have seen many women warriors lately who talk about giving up, they talk about not being able to get out of bed, they talk about having no reason to live.  My reaction to that is the following:

So today I took the bull by the horns and I did a project that I have been putting off forever.  See, I get it that when preparing to do a project the idea of gathering the supplies and finding a good spot are usually what stop me.

Not today..  What I said in that video is real.  It is so fucking hard to have this disorder, and you are only making it worse if you let it win.  You can live with it.  No, I am not one of those that only have pain and the Doc said it’s FMS..  I have it..  hardcore..

But I did it, and so can you.  Here are pics of what I did today:

They started out looking like this...  all green...

They started out looking like this… all green…

So, as well as going to bed early so I can get up and get as much daylight as possible…  I wanted to have some living things and color on the window where I sit most of the time.

So I painted the pots..

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I didn’t care about the mistakes, they dried looking awesome… Then I put some stickers on them

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Now I have shiny butterflies, living plants, and color in my life..  getting ready for the upcoming fibro winter wonderful…  okay fuck that..  it sucks, don’t touch the snow with your bare hands, you will regret it..  I can say that I highly recommend the two things I talked about here.

First of all, if you can, stay awake when it is light out..  DO IT.  Secondly, bring some houseplants into your universe..  Get some super cheap pots and play with paint.  Don’t try to paint like you used to..  won’t work and you will get sad..  just have fun..  forget everything you think you know and just go for it.

My point?  Make yourself do it..  take shortcuts, do it the easy way..  just stay busy because sitting around thinking about how shit you feel isn’t going to help you or the people you love.

Death Preferable Over Fibro Suffering?

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Death Preferable Over Fibro Suffering?

I have seen way too many posts this morning where women are talking about killing themselves in roundabout ways, but still..  Don’t let this condition be the reason you die.  You can live with this.  You just have to find your new path, like I did.

I know that some of you may be alone, and see no other way out..  Here’s the thing about that… What do you prove by giving up?  Also, you are going to let this shit make you give up?

Fucking fight..  we fight..  I fight.  I have to.  I have found a new path, it took me 6 years.  It is hard to step out of that misery ball and make a life for yourself, but you fucking damn well can do it.

All the warriors need to stick together.  I am writing papers, and soon I will start to get media attention to our cause, I just need to figure out how first.  But you can bet your ass that I will.

One last thing in this post… There are people who are dying who would gladly take a lifetime of pain if only they could live.

You absolutely have to remember that even though fibro isn’t caused by depression, our thoughts and our state of mind have a lot to do with how we feel.  If you feel like all is lost, it effects the fibro nerves and effects how you feel.  This is true..

Think about when you are laughing…  You can bring the severity of your symptoms  down just by changing your thoughts, dig yourself out of that bubble, no one is going to do it for you…  But you can do it, even alone..  maybe especially if you are alone..  I cannot count the number of times that my sons have triggered a flare…

Life is still what you make of it..  I started by not thinking about my pain in an inhibitory thing.  I started baby steps out of the bubble of misery that I was in.  I failed..  a lot..

You should really watch that if you haven’t…  it’s a FAIL….  It happens, those sneakers cost me 130 bucks, years ago..  but still, they were mint condition…  now they smell really bad..

Loss?  Shoes, pride..  Gained?  My first video for creating my VLOG here..  and a funny story as well as a funny video on Youtube…

Life is what you make it, even if you have to make it around this condition.  It is possible to get to a happy place, at least a place where you are OK..  just follow along, keep reading my blog because I am still working out a timeline and figuring the steps that I took to get here.

Don’t give up and don’t be selfish, because suicide when you aren’t dying?  Selfish..  period.

Join the fight, help others however you can..  it means everything.  Don’t give up, get up, don’t think about what hurts, just get up and do one thing today that you haven’t done in a very long time.

Tough Love and Broken Hearts

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Tough Love and Broken Hearts

When I got sick, I got really selfish for a long time.  I didn’t mean to.  It truly wasn’t my fault.  The rug had been ripped from beneath my feet and it took me years to even find the edge of the rug again, let alone step back on it wearing flats and presenting as a new person.

I knew that I was selfish, and I tried.  I only missed one school thing, and that is because I was in surgery.

I am the only female in the household.  I “get into trouble” when I show emotions.  Because I live with boys, they assume if I show emotion that I am acting like a crazy person.

This is an issue that I still deal with.  We have come really far on a lot of other stuff, but this one thing..

Last night when the cop was here and I found out that I was being charged and the guy who had a gun on my family was getting charged with disorderly conduct.

To read this story click here

This is an absolute mockery of the judicial system.  Apparently, you can point a gun at someone’s head with your finger on the trigger threaten to shoot them dead in the middle of the street and get a citation..  I was furious for a few minutes.  I was literally holding onto my head when she told me, because of his actions I have PTSD on top of the fibromyalgia.  I can’t move my head and I have no way to go to a Doctor.

Interesting to my sociology/psychology brain is the fact that I thought PTSD came from remembering the fear of the moment.  I could not have been more wrong.  I can’t imagine what a soldier must feel…  but fear isn’t the driving factor for PTSD..

I wasn’t afraid when I was throwing myself on the gunman to protect my family… But I have symptoms since the other night.  I can’t stop seeing the hole in the pistol he had pointed at everything I love.  It isn’t fear…  it’s something else.

I digress, I got fucking pissed out of my head and I slammed a door and went outside.  This nearly turned into the same argument.  My husband angry with me because I “threw a fit” fight…..  I showed a little emotion.  I was getting a talking to while my son..  the entire reason all of this is happening…  is outside making out with his girlfriend.

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I almost took the bait, so to speak, trying to explain my behavior and asking for forgiveness.. I said STOP, this is not something I did, you are giving the talking to, to the wrong fucking person.   FUCK THAT…  I am not a crazy person that snaps like a dead branch.  I was that person.  My boys hated it..  so I stopped. There are many legitimate things trying to piss me off daily..  it takes a lot to break me.

I had just found out that the man that nearly killed my family because of a broken fence is getting a slap on the wrist… I was pissed out of my head..  YUP and don’t you dare sit here and tell me about how there is a better way..  fuck that.  If you can’t stand for me to get mad and slam a door every once in a while then it is time for me to hit the road, because I have an Irish temper and when the situation calls for it I might slam a fucking door.

After I came back in My son was sitting next to his girlfriend making sure that she was okay.  She wasn’t involved in a thing..  she was just here when I stormed through and threw my prayer beads and went out the back door.  I said, “Yeah, I’m fine thanks for asking..  ever..  at all” because he needed to check himself.

He hasn’t asked me if I am okay since if fucking happened.  I don’t know if it is an age thing, or a learned behavior that will never go away but he has no respect for me at all.

People here, who know all the issues he is giving me and all the things he has done and the way he has treated me after have all told me to kick him out.  He has nowhere to go, I can’t do that.  However, this broke me.  My house is tiny, but I am fucking beyond hurt, sad, and angry.  He needs to be kicked out.  That said, I hate that it is called the silent treatment..  It is more than that.

He told me last night that I only made things worse, that I make them worse every time.  I jumped on a gun for him two days ago, after he was where he wasn’t supposed to be and hit a fence..  and I make things worse?

He doesn’t exist in my universe right now.  At all.  I cannot kick him out but I am all the way done.  It makes me sad, but I just can’t.  I am a fucking Psych major… I should know how to deal with this..  I suppose I do know how…  DONE…  you can stay in my house but don’t ask me to acknowledge your existence.

Yes, this will be possible, he has places he can go.  I have places I can go.;.. DONE

I would have packed my own bags and left if my husband refused to hear me again.  Luckily he didn’t.  I was ready to walk.

My husband stood up for me, and pointed out all the shitty things he had done and said since the gun thing..  he is a wonderful man and I love him so much and I am so glad that he finally heard me.

This is a great way to hold hands when you have fibro.  Human touch is essential, for us to be healthy...  hold hands, this way doesn't hurt

This is a great way to hold hands when you have fibro. Human touch is essential, for us to be healthy… hold hands, this way doesn’t hurt

Grab your gonads and stick up for yourself.  Love yourself enough not to be everyone’s crazy bitch.  You aren’t a crazy bitch…  find some peace, be at peace and write off the people that can’t get on board, no matter how much it feels like your heart is ripping in half.

I guess I should clarify, since I use many words to express myself, is this…  I know that you feel shitty because you aren’t the person your children and spouse knew before.  I know it feels super shitty when we hide because we just can’t take it..  Don’t let guilt eat away at your strength.  You are strong, at least you once were.  I got it back.  I did it, I stuck up to my husband and I am sticking up to my kid.  I am telling him why I am treating him this way.  I don’t know any other way to get my message across.  A few weeks at another house?  Of course not.

Hid dad did let him know what an ass hole he was being.  Pointed out that I did, indeed throw myself on a gun to save his life, and he says I made things worse.  Broken..  I am broken..  My heart is.  My strength is still with me.  Hold onto that strength with all your might…  You are sick, you should not have to make everyone else feel better at your own expense.  Stay strong, hold on…  you fucking got this.

Wrecked Cars, Fences, Guns Pointed at my Family

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Wrecked Cars, Fences, Guns Pointed at my Family

I have been as quiet lately as I could.  I have been traumatized.  I know a tiny little bit what PTSD feels like.  I thought I understood it, but I was very very wrong.  I can say this, all of you that suffer with it all the time, you are in my daily prayers..  The following is mostly what I gave to the cop as my statement.  I wrote this the night that it happened, trying to calm myself down.

Wednesday night we were at a very serious induction into the National Honor Society for our youngest son who is in drama, band, NHS, he is the drum major this year and next.. There is more, but no one loves a “Kathy Lee” I am simply trying to lay it out..  how things are at my house…  The next night, my oldest son was taking his friend home..  My oldest can fix everything.  He loves cars and he will be in that field for the rest of his life.

My husband and I are the biological parents of our sons, we have had a few rough patches.  I doubt that anyone who has been together 20 years hasn’t had a least a couple of them.  Following is what I wrote the night of the accident.

The car after the accident.

The car after the accident.

Thursday night this happened…

The people that have money, versus those of us who have none.  I am disabled from working a regular job.  I have severe fibromyalgia.  Yet I strive to make other things happen for me. I refused to apply for disability. I don’t want to lose my drive, although after this I am starting the process over again tomorrow.

I am in college, which is a huge challenge.  I have two teenage sons.  One is in the National Honor Society etc and the other one is a whiz on cars.

My husband works his ass off doing construction just to keep a roof over our heads and food in our belly.  It has been this way for as long as I can remember. Hanging on, knowing that we are two weeks to a month to homelessness if my husband misses work.

We are a happy family.  We are grateful for what we have and money doesn’t matter.  Except that money matters to other people, so we do what we can, but we stand out like a white person in black church where we live.

The population here are white rebublicans and massive amounts of the tea partiers that would like nothing more than to see people like us, around here, they call us lo-breds, wiped off the planet.  I want to wear a sign that I am disabled and I collect none of their money, no matter how badly we need it.

Before the Accident

Before the Accident

Tonight my son was using my car to take his friend home.  He decided to take the long way home.  I had advised against any such thing as it was foggy and raining.  He never listens to me.  He came around a corner too fast, there were other teens out walking at the time.

He swerved to miss them and ended up hitting a fence and, most likey, totaling my car..  which is uninsured because we are poor.  (we have since found out that it is not totaled, but will need months of work).  We only had liability to fix something if we broke it, but not our own car.  Adding an 18 year old driver to the mix made the insurance spike so high we could not pay it.

I have no teeth, because I used the money to buy him that car, see it was mine for now, and he was paying it off.  I knew he wasn’t being careful, I knew that it was likely that this would happen..  I would have been okay if this was just a story about a teenage driver hitting a fence.. I wish that this was a story about JUST a wreck.

My car was just vandalized at homecoming by a kid who has a beef with me because I reported him to the police for taking a loaded weapon into a boy scout meeting. My son drove that car to the dance that night.

The Boy Scouts and the church got him off..  he is in school again and free like a little bird to slash my tires, which necessitated us to put the old ones one, which did not help with the whole SLIDING thing this evening.

You see, it is close enough that we can walk to the guy with the fences house from here, we drove over after my son called us.  We got the call that all parents dread, except our son was not injured.  The fence and the car were a bit dinged up.  The car very much taking the brunt of the damage…  There were two sections of fence that need fixed.

The first thing I said when I stepped out of the car was, “where is the owner of the fence, we need to get that fixed for him” and by the time I had that out of my mouth I turned around and this white guy with a beer gut is screaming at my kid.  I let it go.  I thought at first that he was getting a talking-to and I would have totally supported that.

That is when the Marine that still lives inside me noticed that he was holding a weapon..  I didn’t freak out at that point but I started to vehemently try to get my son to leave..  without announcing that the dude had a gun.  He was out of his mind with rage..  I knew I had to tread lightly, lest he shoot the weapon.

That is not what my son was getting.  The man was screaming at him about horses and how we can’t fix the fence and cussing my son out.   As my husband and I both said, “sir, we would like to talk about fixing the fence for you”.  He turned and looked me up and down, grunted in disgust, called me a white trash bitch and told me that if I spoke to him again he was going to “put me prone” Which is a firing position, laying down on your stomach, it is also what cops do when they want to cuff someone.

My kid hit a fence, minimal damage, we offered to pay, he told us we couldn’t and never calmed down ever, he did not say one calm rational thing the entire time.  I told my son to get in the wrecked car and leave.  He didn’t want to.  My ears ring, I can be loud when I talk.  They heard me telling him to leave.  I wanted him not to get shot..  we wanted to do the right damn thing.  That guy walked up to the accident looking for a reason to pull that trigger and take out some of us “loafers” who are lo-breds and skulking by on his tax money for his huge horse ranch that he owns.  Just loookng for a reason to pull the trigger, which his hand was on, by the way.

We were still saying “calm down” when he drew down on my son in the wrecked car, trying to get away lest he get shot.  My husband stepped up and my world stopped when he pointed that gun at two of my boys.  I ran to my husband and I wrapped myself around him, between him and the gun.  When the guy faked putting it away as I was turning around, I saw him coming back up with it to take aim, once again.  It was very obvious he had no idea what to do with the gun, his finger was on the trigger.

I took off for him.  I am a mother a wife and I used to be a Marine…  I don’t remember exactly but I know that I ran toward him, between the gun and everyone I love in the world.  I ran and his wife stepped in my way, my mission was getting on top of that gun..  I pushed her.  Not even so hard that she fell..  she is fine.

* (addition to original) I have since given this a lot of thought, pushing the lady… I got cited for harassment, which is strange.. She chest bumped me so I couldn’t get to her husband.  He had a gun on everything I love in the world..  I remembered finally..  exactly what I did to her.  She chest bumped me, and I barely remembered her being there at all..  when she did that I pulled back and was going to punch her in the face..  but thought better of it, however I had already jumped in the air and she was shorter than me..  so instead of punching her I grabbed her on either side of her face, which was all I could reach, and I pushed her out of my way.  I stopped myself from laying her out*

My husband pulled me from jumping on the gun and he then the angry man with a dinged up fence had the gun pointed at me, success as far as I was concerned.  Over a fucking fence.  Not OVER the fence, but because he was a hothead with a weapon that he should not have and a few little winky things that need fixed..  he said 10 grand.  He really did think I was stupid..  I wonder if they took his blood alcohol level.

After my husband grabbed me the gunman said “you touch my wife again and I will put a bullet in your brainpan and I have every right to do so” that is when we got in our car and left.

This ties in.  We have the shitty cars, we have the shitty clothes, we don’t have money or land or means.  He has horses worth millions of dollars and he was going to shoot my family over a fucking fence?  I don’t want his land, or a horse, or for this to have turned into the nightmare that it has…  but when guns come out, mothers are gonna respond..  who knew that I was the type to literally throw myself on the thing.

We got a good cop.  Shocker, she didn’t even know that he had a gun, just that we had fled the scene of the accident..  not that we fled because he pulled a gun on us.

He tried to tell me he owned to the middle of the road..  I said, how much?  We will fix the fence..  Looks me up and down and tells me

You can’t fucking afford it you white trash piece of shit….

Class warfare on whom?

Oh and by the way….  Now it’s fucking warfare you twisted, ridiculous piece of shit.

End of what I wrote the night of the incident

My youngest jumped in the back seat..  My oldest was already headed to the place where we were hiding his car.  At our house we have nowhere to hide.  Especially cars…  and we were scared he was coming after us, as he said he was going to kill me, and he was within his rights, he was also within his rights to kill my whole family..  he said…

Reader, I know that you must think..  all this violence, this family must have something wrong with them.  Slashing tires (for doing the right thing) now a guy with a gun, but we couldn’t be more normal….  Our children are exceptional human beings, I never let myself fall into the trap of despair because we don’t have money..  fuck that..  we have each other and we are happy..  end of story..  fuck money……

So, my youngest and my husband and I jump into our car and leave immediately.  We went to the spot where we put the car, picked him up and came home and waited for the cop.

I did not speak to her that night at all.  I was beside myself.  My husband and son told her the truth and like I mentioned, she had no idea about the gun until we told her.

Now, we knew that she was coming back to get written statements from my son and husband..  I also gave her what I typed up that night because she said she wanted to talk to me to and it is really hard for me to speak clearly right now..  FMS and PTSD are not fun at all ever, when you have them both at the same time…  well….. you are pretty much fucked.

She started with talking to Shelby about his traffic citations, which were a given and was no big deal.  She looked at me and said because of the ONE witness out of the SIX that were there had a different story than I did.

The cop didn’t even interview the only other adult that not only saw the whole thing, but was screaming at the man with the gun to calm down.  Never spoke to her or any of the other four boys that were there, only one kid.

I knew I wouldn’t get off, I got cited with harassment.  My husband looked up what exactly that means and I didn’t do that.. but..  that isn’t the infuriating part.

I have PTSD, my sons saw their mother throwing herself on top of a gun..   None of us are okay.  We have had to borrow a truck from my husbands work because we are down, once again, to zero cars…

I will probably have to use money that was going to go to school to get us another car.  Which means the payments will be out of this world and I will end up having to quit school.  I am simply being realistic about this part…  This has done us in…  we were already struggling, and I have to keep writing and keep hoping that I can narrow my focus and start a book to sell..  I am even thinking about writing erotica just to make a little money.

I am trying to keep my head up.  I see the positive.  Everyone is alive and the only one physically hurting is me, but I am like that all the time so it’s just some new pains..  added in for fun (?) I’m trying here…..

Now, I was in a bar where a brawl broke out when I used to mobile DJ.  I got hit with a plastic outside chair..  The cop told me he could do nothing to that guy because there was no mark on me..  I was only bleeding..  that could have been anything.

Don’t care, I got harassment..  whatever..  the gunman..  what ya think he got?  Assault, death threats (of which there were many) pointing a gun directly at my head and saying he was going to shoot me in the head…  What ya think he got?  Disorderly. fucking.  conduct.

What.the.fucking.fuck.fuck.fuck?

The cop even suggested that we go to his house and talk to him about fixing the fence..  My husband said that we will fix the fence but we are NOT going to go near that man.  He had no idea what he was doing with that gun and his finger was very much on the trigger

In other words, I was an ass hair from getting shot.  Better me, than to lose one that I love..  but he gets disorderly conduct?  If we were the ones flashing a gun around we would be in jail.  Simple fact…  money+ability to afford dental work = getting away with direct death threats.  No money + shitty teeth = jail (if we had been the ones with a gun).  He gets disorderly conduct…

I am broken right now.  I am not seeing a bright side.  I am not afraid, but the PTSD is killing me.  Something happened in my neck and I can’t move my head..  I think I slipped a disk further…

disorderly fucking conduct.. is all he gets..

I just saw this on Facebook and I feel better, I am finding my way again….

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Fibro 101.. Must Read

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Fibro 101.. Must Read

I laid in my bed for two years and tried to stop my heart sowouldn’t hurt anymore.  I could have used some of this information.  Please, don’t give up and share with your friends.

A lot of women on the boards that I see, who are newly diagnosed with fibro, or they have a terrible doctor, and they have so many questions about Fibro.  It took four years for me to get diagnosed.  The popular theory still used by doctors is that it is caused by DEPRESSION.  That is total bullshit.  Our serotonin is affected, as you will see in later information; but they are prescribing Cymbalta and Lyrica like they are a cure all and they are treating a condition you do not even have.  I am compelled to tell you the truth.  I take a low dose of Prozac, just because fibro jacks your brain, and the way it works; that is the reason I take Prozac, my brain is twisted.  All the chemicals and neurotransmitters in our brains are broken, it is a condition with multiple things that count against us.  Read on, I have proof.  This is a nervous condition.  Fibromyalgia is a neurological disorder, not caused by depression.

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Please read the whole thing.  I know that it gets dry, but even if you skip those parts that is okay, just print them and take them with you to the doctor.  By no means do I want to insult anyone’s intelligence, but it does get dry for a bit.

I want to add at this point that in one of the studies I was reading there was a wonderful quote from a warrior, her name is Mrs. P.  She says, “Most people do not understand fibromyalgia.  They don’t really get it; they see you, they look at you, and you look fine.  So they do not understand.  The FIBROMYALGIA PAIN feels like a deep muscle strain or pain.  For me, it has been mostly a dull deep pain and ache throughout my body.  I never know what my day is going to be like.  I have to wake up in the morning and see what hurts and how I can medicate it and how I can function for the day.  During the day, I feel I have an expiration date on me.  It’s like I have a weight around my neck, back, or waist and I start to go down after a while.  I can still feel okay mentally but my body just quits on me and I have to lay down.” (Clauw, 2014)

I almost fell out of my chair when I read that.  She is me and I am her.  She explains it quite well.  I have learned a lot today, with a few hours to read some recent research I learned quite a bit.

First of all, I know that we wonder why women are more affected by FMS.  I learned today that it is because we have many more tender points than men do (Clauw, 2014).  I learned that even though we see things like yoga or cognitive exercises (like puzzle games), and BEHAVIORAL therapy and think that there is no way that will help…  I am here to tell you that it does.  I did physical therapy, and for me, I was simply sad that I don’t have access to a pool because exercise in a pool is so good for you and it doesn’t hurt at all.  But I do puzzles on my phone and brain exercises, I get physical exercise when I walk around.  I don’t wonder why I am gaining weight.

I will say here what it is that I take for fibro.  First of all for pain I take cannabis.  Look below for links to figure out which strains are best, and stop smoking that shitty stuff, it won’t help and it has pesticides.  I take Xanax, GABAPENTIN, a beta blocker, Prozac.  I think that is all.

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Click on the image to go to a list of links that talk about the best strains for FMS, specifically.

You may be asking why your Doctor doesn’t know some of this stuff.  That is because most of these studies are done in other countries because Cymbalta and Lyrica want to make their MONEY.  Think I’m lying?  Keep reading.

It is not my intention to talk about stopping your medication.  Not even a little bit.  That would by hypocritical because I take pills, I just want you to be able to work with your doctor and get on the right ones.

INSOMNIA..  Let’s talk about that first.  Everyone with fibro suffers from Insomnia.  I have wondered why it is easier for us to sleep during the day.  First, “insomnia, can lead to severe impairments in cognitive functioning and quality of life.” (Birdwell, 2014).

When we sleep there are four stages, during stage 4 a healthy person will repair physiological (characteristic of or appropriate to an organism’s healthy or normal functioning <the sodium level was physiological>) damage and maintain their body, this is also the time that you consolidate memories and REST your neural systems.  ß- see there, rest your neural systems, even when we do that half sleep thing that we do our neurological systems are not repairing themselves like they are supposed to, leading to falling down and severe weakness, sometimes it feels like there is extra gravity (Birdwell, 2014).

 

It has been found that fibromyalgia patients display shorter sleep times, ineffective sleep, they wake often, they have fewer hours of REM sleep, they have shorter NREM (stages 3 and 4 of sleep).  Which means our bodies are NOT repairing themselves like they are supposed to.

Circadian rhythms are all the biological processes of the body.  For example I am working on changing my eating circadian rhythm.  Currently I only get hungry at night, no matter how early I wake up.  Oh, side note..  I drink coffee.  I know we technically aren’t supposed to but we aren’t supposed to take naps either..  I had to pick one.  I bring this up because when you are searching for ways to feel better, it can seem overwhelming and a bit over the top.  I do what I can and I am doing alright.

I digress….

What Causes Fibro?

Here is where it gets confusing for a few minutes, but I promise to keep it simple.  Don’t get butthurt if I give the definition for a word and you already know it.  I want everyone to finish this piece knowing a little more about what is happening to their bodies.

Let me start by quoting one of the studies that I read.  It says that “fibro pain is the body’s cry for energy” (Bowden, 2014).  That resonated with me in a big way.

 “Etiology and Pathogenesis” ( Etiology – the cause of a disease orabnormal condition) (Pathogenesis – the origination and development of a disease).. So the cause and origins of fibromyalgia.  “Several factors such as dysfunction of the central and automatic nervous systems, neurotransmitters, hormones, IMMUNE SYSTEM, external stressors, psychiatric aspects” (Bellato, Marini, Barbasetti, Mattei, Bonasia, & Bionna, 2012)

 “Another mechanism supposedly involves descending inhibitory pain pathways, which modulate spinal cord responses to painful stimuli.  They seem to be impaired in patients with fibro, helping to exacerbate the central sensitization” (Bellato, Marini, Barbasetti, Mattei, Bonasia, & Bionna, 2012)

Because Funny…..

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What this is saying is that there are pain pathways, the ones that transmit the messages to your brain when you touch the stove, those..  they are broken if you have fibro which essentially means this is yet another way in which our nervous systems are jacking us up.

Then there is this, “Apart of segmented neuronal mechanisms, glial cell activation also appears to play an important role in the pathogenesis of fibromyalgia because they help to modulate pain transmission in the spinal cord.  Activated by various painful stimuli, they release proinflammatory cytokines, NITRIC OXIDE, prostaglandins, and reactive oxygen species that stimulate and prolong spinal cord hyperexitability..

(Neuronal mechanisms are just how the neurons are working in our brains..  Overworking)

Essentially, what that comes down to is this..  there is a whole other system working to make us hurt.  Another system in our brains and our backs..  another system that effects the levels of neurotransmitters in our bodies, another issue that makes you feel like your skin is throwing a tantrum.

I found this very interesting, because I am strictly cannabis for my pain, but have tried other pain relievers.  I was a HEROIN ADDICTfor a few months in another lifetime.  I don’t want to go back there.  I smoke an herb that won’t hurt me at all instead.

Today I found out why opiates don’t help.  Because the above explanation there are peptides (any of various amides that are derived from two or more amino acids by combination of the amino group of one acid with the carboxyl group of another and are usually obtained by partial hydrolysis of proteins) that are in your bodies own opioid system.  They are, of course, hyperactive and they block the opiate medication from helping at all.

Because Adorable….

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I live in PA and our medical marijuana bill just passed senate, they cut a lot of things from it, but they left fibromyalgia, as one of ten disorders, because they know that nothing else really helps.

Now, the real shit.  I will walk you through my day.  I wake up and have coffee and a smoke on the back porch while my dog has a wee.  I have come back in the house and totally forgotten about the dog… I felt awful.

I forgot that my son was bringing friends on the bus and I didn’t make the house 420 friendly (a bong was out).  My son was very angry with me.

Family.  Forget the extended ones.  Unless they know someone else, they will simply make you feel like you are a shitty lazy shit that doesn’t want to work.  We don’t need that shit, because we know better.  To Hear that it is all in my head I respond and I tell them about Substance P.

Excerpt from earlier blog

“There have been several studies in other countries on fibromyalgia and what happens to your sleep cycle.  Marter and  Agruss did a study on the brains of women who suffer from fibromyalgia and sleep deprivation (Marter & Agruss, 2008).  They discovered abnormal cortisol levels.  This might lead to the increase in production of somatostatin, which is a neurohormone that is secreted from the hypothalamus in the brain and it inhibits the secretion of other hormones (Somostatin, 2011).  Since the Fibromyalgia patients have three times the normal level of substance P, which is a neurotransmitter in pain pathways (Collins).”

Imagine your neurotransmitters as being like electricity in power lines.  These are what carry the messages through the body and to the brain.  Fibromyalgia feels like someone unplugged all your shit and plugged it back in the wrong SLOT.  Example, unexplainable, excruciating pain because our wires are all plugged in wrong.

Also, as stated above from my paper, we have a super amount of a thing called substance P.  Now, going back to the electricity example, substace P is part of the electric current, it helps carry the power to where it needs to go..  It also helps regulate how much electricity (neurotransmitters)  is in the body.  We have a lot of this, up to three times as much as we are supposed to have which means our bodies essentially need a SURGE PROTECTOR.  Instead of surges though, ours is pretty constantly zooming through our nerves, unchecked by the system that is supposed to control it.   Like a nuclear meltdown all the time.  Vibrating is what it feels like for me.  My eyeballs even vibrate sometimes….  END

I suppose that yes..  it is in my head..  my brain to be more exact.

Stop taking things you don’t need.  We can fight this thing together, we just need more people to listen.  I just want to help.  Knowing these things help me understand why I feel the way I do.

We are going to keep doing insane things.  We are going to keep forgetting.  I had to give my husband my xanax because I would forget I took one and I would take another running out early every month.  I have worked for a long time taking baby steps and failing and falling a lot.  I am going to write a BOOK ON how I got to this place.  I hurt, nothing has changed except my attitude.  Stay strong warriors and contact me if you have any questions.

This is in no way a solicitation.  I don’t do that.  Shit, I don’t even GET DISABILITY from the state, even though my symptoms are severe and I would qualify.  I do this because it helps.  I do this because it helps me to help others.  I am in school for sociology and psychology.  I am learning so much and more about everything, researching fibro every chance I get.

If you want to remove my blog link from your page because you think I am somehow soliciting, just do it, because you don’t deserve my help.  I could be doing other things.  Selfish with the things that I learn, but it isn’t in me to be like that.  I am not selfish and I hate MONEY.  I have nothing of worth except my information about this condition that has millions of people feeling alone and totally defeated.

This is my path.  This is my purpose..  let’s find yours; I promise that you have one.  We will work together to figure it out.  Always remember, there is no failure, you will learn patience, and it is all about baby steps.  This won’t be easy, but it is far superior to sadness and a non-life.

Bellato, E., Marini, E., Barbasetti, N., Mattei, L., Bonasia, D., & Bionna, D. (2012). Fibromyalgia syndrome: Etiology, Pathogenesis, Diagnosis, and TREATMENT. Pain Research and Treatment, 1 – 17.

Birdwell, T. (2014). Fibromyalgia and the effects on the brain.

Bowden, J. (2014). Hope and healing for fibromyalgia: the latest research and promising therapies for this misunderstood and often baffling disease. Better Nutrition.

Clauw, D. (2014). Fibromyalgia: a clinical review. JAMA, 1547 – 1555.