Monday, September 1, 2014

Keep Fighting Warriors... Kick Fibromyalgia in the Balls

I am going to start telling a bit of my story.  I think it is interesting enough.  I won't be writing my book in here, but a little background might be nice.  I grew up in southern Lancaster county.  The one that you see on Amish Mafia, or any Amish show really.  That is where I grew up.  Next to the Amish.  I am not Amish.  But here they live among us "English".  They don't have little hidden spots like throughout the rest of the country.  I guess that is why the shows here are so interesting, yes I watched them.  Yes I think the Amish Mafia is real.  I don't think those guys on the show were anything but lackeys and that is because it is the Bishops of the church that run the thing.

When I turned 15 my dad left us.  Up until then we were like everyone else, because that is how my mother liked it, keeping up with the Jones.  She felt inferior to her male brothers because she was the girl and got treated that way.  She passed that on to me, until very recently I wanted their approval, no matter how often I said that I didn't.  But now I have heard enough and learned enough that they truly don't matter, my life's path has nothing to do with them anymore.  I suppose when you get Fibromyalgia and you lay in your bed for two years wishing your heart to stop..  or absolutely everything in your life changes... that those things are enough to finally give me the strength to say "fuck what you think of me, you would never survive what I have."

After my dad left it wasn't long until I was driving.  It shattered my mother, no more so than when he took her to court and we lost our house.  I realize now that my father set a precedent then that I should not have forgotten.  However, he started coming around after a year or so went by, and I spent my life wanting my daddy to love me, and since he was acting like he did I ate it up.  My brother, always the keen one, wasn't so easy to please.  I ate up the attention like it was my life's blood.

It still wasn't enough.  I went a little crazy.  Partying, having sex with multiple people, everything a little girl who needs her daddy does.  I found it in sex.  I knew that I was malfunctioning.  I knew that I was crazy.  I was self-aware, even then, I knew what and why I was doing it.  That did not stop me.  My mother thought it would be best if I moved in with one of my cousins for a while.  She thought that would help.  I loved staying there.  Once I went home they all decided that I needed a husband, that I needed an older man to marry me and tie me down.

 My mother introduced me to a guy named Nick.  I did not think he was interesting.  I was not sexually attracted to him.  Nothing.  However...  to appease my mother and not hurt anyone's feelings I went out on a date with this guy.  He bought me alcohol and took me to the woods to try and fuck me in his car.  First date.  I didn't want to hurt his feelings.  Sex wasn't emotional for me then.  Oral was the name of the game that night.  Not on me..  I did it.

Now, not wanting to disappoint my mother I said I would go out with him again.  There was a lot of pressure from all around.  This is the guy for me and that is that.  They thought.  Second date?  He bought me more alcohol and took me to a hotel room.  More space for activities than in a car, I suppose.  Yeah, I did it.  Whatever, he had a really small penis.  I was less than impressed.  I didn't want to see him after that.  He called a million times.  He showed up at my house.  I told him, I just graduated high school, I am leaving for boot camp...  I am going to go to the beach, have fun.  Not a hotel room with a tubby guy with a small penis that I wasn't attracted to at all.  I pretended that I was interested until I left for Marine boot camp.  (more on that later)  This is the first time I have told this story.

It wasn't long before I met the love of my life.  I graduated boot camp.  Didn't last very long in the Marines, and I met the guy I am still married to.  18 years together.  The ACTUAL guy I was meant to be with.  I love him as much as I did when we first met.  We have raising brilliant children together.  There have been some HUGE bumps in the road, but we overcame all of them and we are stronger for it.

That blast from the past was not fun to talk about, but I find that the more I dig the more I find stuff that did fuck me up.  I find more hurts.  In reality trying to improve myself  is a trip down memory lane.  I remember more than I thought I did and until I started down this path I had made myself forget.  That is not healthy.  

It's why psychiatrists ask about your childhood, because truly the shit you think you are over?  You probably aren't and if you are going live your best life, you have to rip those bandages off and deal with it.  I write.  Then it is in the universe.  Let me say here I never told my mom, she still doesn't know..  about the Nick dude.  It would have killed her.  My mother is the most selfless person that I have ever met.

This brings me to now.  I have my house, right in the middle of my huge family... my marriage is amazing, my kid is a drum major..  I am sick with fibromyalgia but I am fighting and I am happy.

Over the winter, the one where I spent a month wrapped in blankets with my dogs because we were in the middle of an arctic freeze' ; well during that time our past landlord called and said in January, that we had to be out of our house in a month.  We panicked.  I called my brother to ask if the kids could stay with him so they could graduate from this school.  I didn't ask for help, but I was crying my face off.  My amazing brother, whom I love so so much, immediately called my father.  Said Tammie and Jason and the boys are about to lose their house.  I will pay for what needs fixed in Mammaws house (he owns it) and they can stay there.  I called my dad.  Crying.  I said daddy we are in trouble, we are paying on time, we are taking care of the house, somehow though my landlord is about to lose the house to the bank.

He said to come over the next evening and we would work everything out.  So many red flags, I knew better, but I was in such a huge amount of trouble though that I really thought he was going to help us.  The next night we went to his house, Jason and I were both zombies.  We have had too many struggles in our life..  we were beaten.  My dad proceeded to tell us that we could not move in because it would increase taxes..  we offered to pay.  He asked why don't we just buy a house.  I left there out of my mind.  I couldn't believe that my own dad would leave his daughter and grandsons on the street.  Trust me on this, you aren't going to find a place to live in Lancaster county in the school district we wanted; in the middle of the worst freeze we have ever had.  He has someone living in the house now.  My husband does not understand why that pisses me off..  but it pissed me off..  I am over it.  I wouldn't want to live any closer to that ass hole than I already do.

My mother is on hubby number 2.  She loves him.  My dad took my children's inheritance when he made mom sell the house.  My dad is on wife number 3.  It was her that told him she would leave him if he let us move into the house.  There is now someone else living in that house, and for us it worked out.  The original landlord's dad bought the house, and now he is our landlord and we love him.

I later found out that first of all my dad changed his will and wrote me and my brother out of it and put the new wife and her kids on it.  I don't give a shit about it, if not for my kids, I have nothing to give to my kids because nothing is coming from my mother, who is still driving the dead wife's car.  Now my kids have absolutely nothing because he is giving it to children that he didn't fuck up, or create.

He is 6 foot 4 inches tall.  He is terrifying when he is mad.  He is mad a lot.  When I was little he liked to pick me up and throw me, onto a couch or a chair.  He never apologized.  Given the fact that he took our house when we needed it, he refused to let us stay in an empty house, the only question left if how the hell it took me so long to realize that he is nothing but a sperm donor?  Thanks for making me exist, ass hole.  Oh yeah, at his wedding reception he stood up and said that he found his real family.  My brother and I were both there.  He hurt my brother.  Without all of the shit he has done to me, no one fucking hurts my little brother.  Luckily I was the one that he was awful to.  He was nice to my brother.  It was me he screamed at.  I remember every day my mom would cook supper and tell me, every single day, "please don't say anything at the dinner table"  Inevitably I would piss him off, for no reason.  He would scream at me.  I would leave the table and spend hours in my room crying..  Then my mom would come in and tell me he didn't mean it.  That he was just stressed.  Just realized I am a little pissed that she didn't stick up for me, she was even scared of him.  That is no excuse for allowing your child, who did nothing wrong, to get screamed at, and never finish dinner.  OOH..  new one..  ouch.

My husband and I are perpetual renters.  We worked really hard to find houses that were in the district, so the kids could finally stay in the same school for more than two years.  Which has brought me almost full circle.  I live in a house that my grandmother helped to build.  The house is no longer in the family, and our landlord is great; we do live right up the road from my entire extended family.
Now, there is one side of my family that puts up with me, but they don't approve of my life.  That is okay.  I have an uneasy truce with them.  The other side of my family won't speak to me because I am a "no good pothead".

 Now, through my previous posts you have seen that I am an activist for medicinal and non-medicinal marijuana.  I go to Harrisburg, I fight when and where I can.  Gas, money, and cars and my teeth all hamper what I am able to do.  I don't want to take any chances with politicians thinking that I am a meth head, because my braces cracked my teeth.  I am just too poor to fix them.  That being said, I fight and that brought me out of the "grow room" so to speak.  Now, they act a lot like the Amish.  My Mammaw died and at her funeral one cousin spoke to me.  ONE.  My dad barely spoke to me, and he was the only reason I went.  I find funerals to be excruciating and macabre.  I don't want one.  I think it drags out the suffering and there is enough of that.  I digress.  No one spoke.

The family with the son that sexually abused me when I was 6?  They turned their back.  No one knows about that one either.  My husband knows.  I told my mom, but she has this amazing lock box where she keeps things that she doesn't want to know about.  That shit it locked tight too.  So, blogosphere, you are the first to hear that one.  That family won't speak.  How ironic.  I was fucking 6.  I saw him once, and it was before I found my power and he looked at me with disgust and said "look at you, all those nasty tattoos. you look like trash"..  Now had this happened to Tammie 3.0 he wouldn't have left with his nuts attached.  Tammie 2.0 was afraid of this happening and I simply escaped as quickly as I could.

Now you know a little about me.  I have found my story to be an interesting one and I have overcome so many things.  If I can hurdle all this shit, and having fibro I can fucking be anything I want.  I am learning my boundaries and I am living my best life and I want to help others do the same.\

All of that shit was like an iron around my leg holding me back.  Making me meek.  Fighting..  really fighting changes you.  It can be painful, you will fuck some shit up..  but there is no reason in the world that you should lay down and let a thing beat you.  Fucking fight.  Stand up, get in your wheelchair, and fucking fight for happiness and the best life.

Sunday, August 24, 2014

You Too Can Meditate. I swear. I did.

By now most of you know that this is about my journey.  My journey in raising two amazing humans and getting fibromyalgia and getting your life back from this disease.

Yesterday I meditated for the first time.  I was like most of you probably are, I thought yeah right, me?  Meditate?  Except it worked.  I set a timer for 15 minutes and I sat beside the creek in the silence and I sat right on the ground.  I made the Ohm sound because the vibration seemed to connect me more to the energy that was around me; it connected me to myself.  Go to a quiet place.  I know that now you are probably thinking, but there isn't a quiet place.  However, if you think hard enough I bet you can think of one.

I was calm all afternoon, plus the minute I came back into the house I was hungry, during the day.  I, literally, cannot tell you the last time that happened.  I have eaten during the day because I am trying to fix my circadian rhythms, but hungry?  I was amazed.

Will this heal you?  Nope.  But it will help you feel better today.  Rationally, that is the best we can expect.  Two things come out of this.  First, I was relaxed and connected to my body.  Second, I was hungry and I have already learned a bit about self-soothing.

I know that turning your hands like this might hurt a little at first, but if you completely rest your arms it helps a bit with the pain.

 I know how easily overwhelmed we can get, this is a helpful skill and if I feel it after one session, then it is obviously an effective practice.  Just try it once.  15 minutes.  Oh yeah, that was the other thing.  I thought 15 minutes, clearing my mind... ?  Never...  however, the time flew by, even for me.  Also, you may slip a couple of times, stop the thoughts with an ommm, because you need to distract yourself with that noise as well as your breathing.  Slow it down, in your nose and out your mouth.

For now, I am late on homework.  Have a wonderful, soft, stress free day.

Friday, August 22, 2014

Remember to Forget... Guide to Living With Fibro... Also.. Mamabirds guide to raising teenagers

Remember when we could take a shower without needing a nap after?  Remember when we could walk around Walmart literally all day long (I was a manager) and not feel more than the aches that healthy people have?  Remember when your kids were embarrassed to be seen with you in the Walmart because you had to ride in the cart?  Remember when you could cook, because you remembered that you were cooking.  This happens to me all the time..  I burned soup.  How the hell do you burn soup?  I did...  
This is a daily fight.  I have to type these when they happen in my head, not before, not after, but while it is in my head, because I only have around 30 seconds before my memory resets and I forget everything I was just saying and everything I was about to do.  I have homework today, but my muse granted me the ability to write some of this shit down.

It is going to be difficult for your kids to see you sick.  They may be the only ones in your life that really know and understand how sick you are.  Mine knew, and they are teenagers.  However, don't forget that you are their mom and they are scared out of their heads that you are going to die.  Mine are still afraid.  I am at the point that I mostly laugh when I fall, but it scares the shit out of my teenagers.  Always let your kids know that you are okay.  Don't let them live with the fear that comes with seeing your mom in so much distress, even if they are teenagers.

Teenagers are hard.  I missed big chunks of their tween years and they are more damaged from that than I thought.  Don't push your kids away, even if you feel like your brain is about to explode and your legs and arms feel like running away...  keep them close.  Teach them that as bad as it looks, we are the lucky ones.

It is more difficult to care for yourself when you have this shit, but it is possible to live a happy life.  You just have to be stronger than the disease.  Stronger than you ever thought you could be.  I have a new 10 on the pain scale, all thanks to fibromyalgia.  It changes everything, but no matter how you feel, it is essential that you hold your kids close so that they are not scared.

Push your limits, it is the only way to start to heal.  Yes, I said heal.  I still have fibro and I am in excruciating pain almost all of the time.  Educate yourself.  Read blogs.  Love yourself.  Don't lay in your bed unless you are about to sleep.  Randomness is the name of this game.  However, if you look a little deeper you will realize that as chaotic as this feels, it is predictable.  We feel so chaotic that we don't realize that we are totally predictable.  That helped me a lot when I realized that.  I still feel like a walking ball of chaos, but in reality I am not.

This post is courtesy of Skippy, my alter ego...  the one that resets every 30 seconds. 

I thought of something else, but I forgot..  oh yeah.. So, if you have fibro and a re-set on your brain it helps to learn stuff.  I am in college online.  It is a struggle to keep up with the work, but I am so glad that I have that in my life.  Don't be afraid for real, remember it is just your body telling you that you scared.  Our brains are broken, we learn to live with a broken brain.

Thursday, August 14, 2014

What is Fibromyalgia: My Research and Pro Tips for Living Your Best Life

The statement above is one that helps me get through my worst days.

In my facebook group, Fibromyalgia can be funny I have had a lot of questions lately from ladies who have just recently begun the process of living with this life-changing disease.  I know what that feels like.  It is nearly impossible to imagine a lifetime of pain, not sleeping, losing the ability to do the things you love, being sad because you can't go skating, or to car shows with your kids, feeling stupid because your brain stops working correctly, walking circles around your house because you forgot what you got up for in the first place.

It is terrifying to me when I can't remember something.  I am at the mercy of my loved ones to tell me if I have seen a certain movie, or read a certain book, or watched a show; the process of our brains is moving so fast that before you can get it out, you forget what you were saying, even if I have started to say something, if it is too long, I forget what I was saying halfway through.  Most people don't understand.  I have been working on not explaining every single time I seem stupid, or high, or whatever.  I struggle still with explanations to a store clerk or someone I am talking to on the phone.  Texting is your friend.  Writing is your friend.  I can type fast enough to keep up with my brain (most of the time) which is a relief because I am able to help others with the words that I can write.  I also find the more I write, the better my brain behaves when I am talking to people.  Don't be afraid to tell people you have a nervous condition and you have a hard time speaking.  Especially on the phone.  I can generally do all right in life.  It is when I have to call the Dr, or the Pharmacy, or customer service to extend payment times on the bills...  just say I have a nervous condition and it makes speaking difficult.

I like this picture because this is what it feels like sometimes.

Now, I just wrote a paper on insomnia and fibromyalgia, I am going to share with you what I found out.  Tests are being done in other countries.  I am going to simply copy and paste the pertinent parts.

.  "Insomnia can lead to severe impairments in cognitive functioning and quality of life."

"There are no concrete answers as to why we sleep, however, one theory is that is repairs physiological damage and maintains a person’s body, as well as keeping the mind in good working order (Lefrancious, 2011).   REM sleep is important because it is the time that you consolidate memories and rest your neural systems.  Circadian rhythms are your body’s biological rhythms and sleep affects the circadian rhythm as well."

What this is saying is that REM sleep is the most important phase of sleep, without it our bodies do not repair themselves.  Fibromyalgia blocks us from getting to REM sleep.

"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, it's terrible.

It has been found that fibromyalgia patients display shorter sleep times, inefective sleep, they wake often, they have fewer hours of REM sleep, they have shorter NREM sleep at stages three and four compared with healthy control subjects (Sanchez, Diaz-Piedra, Miro, Galvez, & Buela-Casal, 2012).  They have found that the alpha pattern disrupts the sleeping brain of a fibromyalgia patient.  This is directly relational to unrestful sleep and pain in the morning (Sanchez, Diaz-Piedra, Miro, Galvez, & Buela-Casal, 2012).  

Now, it is just now coming to light that fibro is not cause by depression, and so far most doctors are still under the assumption that you are depressed.  I always feel like my body is telling me to flee flee.  I certainly know that my adrenaline is broken.  I also know that I am NOT depressed and fibro has nothing to do with depression.  Except you might get depressed because you feel like absolute shit all the time.  Try not to let that win.  Small things can make your day better.  Getting out of bed and wearing a bra.  Getting dressed.  Taking a shower or a bath.  You can easily figure out new things that you are capable of. 
 I will forever miss the things I can no longer do, that pain will never go away either.  All we can do is keep a positive attitude and face this shit down like a fucking warrior.  I was a Marine.  I was already a warrior and trust me on this I am harder now than I was when I graduated Marine Boot Camp, that is no lie.  This is a fucking battle, and we have to gear up and muscle through.

I am having an adrenaline rush all the time.  Part of starting to heal is recognizing that this is your reality and you sort of have to start back at zero and figure out how to live with this disease.  That is essentially what this entire blog is about, finding myself in the midst of this hell and living the best life I can.  Granted, it's a new one and I cry and I get pissed off and I wasted a lot of energy to figure out that the best Doctors don't know what this is, you did nothing to cause this.  No one knows yet.  Try not to spend too much time in the "what did I do to deserve this for the rest of my life" phase.   Firstly because you did nothing.  You don't deserve this.  None of us do.  Use that time instead to start to learn your new limits.  Baby steps.  For example, I have a rule that I don't touch cold things without gloves because there is something with my hands and feet that set me off.
Don't go where there are flashing lights, or loud noises.  However, if you love fireworks, wear headphones and listen to music.
I will end this here because I have homework.  Check out my fibro page.  I think laughter is one of the best medicines that are left to us.  Hang tight and always remember that you are not alone.

Medication:  I am on a very low dose of Prozac.  Because like I said, this is not depression.  Most of the popular meds that patients are taking treat depression.  Then they don't work and you feel defeated.  American docs are not all caught up like I am.  This is what I am going to school for.  My life goal is to help people with fibro find their happy place.
I medicate for pain with cannabis, it also helps me think.  I do not live in a medicinal state yet, but I am fighting for the laws to be changed.  Breaking the law is fine by me because it is keeping me off of the opiate pain medications like vicodin or percoset.  They are all opiates and opiates are heroin.  I smoke an herb that CANNOT kill me.  It helps me.   
Any questions you can find me on my facebook page.