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.



Friday, August 8, 2014

Sex, Drugs, and Multiple Orgasms

If you are related to me, you might want to skip this one.

Although this photo is several years old I still love it and I have such warm memories of that day.  It was obviously pretty monumental to walk around naked and painted, but I cannot deny the way it helped form my inner self.

My husband and I were so young when we got together that we have quite literally grown up together.  First off, let me start to explain the title.  I have had multiple orgasms since I met my husband.  Every time we have sex I have at least two.  With the fibromyalgia I have to cut sessions short sometimes because I am in too much pain, or I am simply exhausted, but I never fail to have at least two.

I have found that using Molly/MDMA, which is the main ingredient in extacy; makes the pain go away long enough to have amazing sex with my husband.    Magic fungus (mushrooms) also work pretty well.  You know, we had the kind of night that married people almost never get to have.  We didn't even have to leave the house.

I know that this is an illegal drug, this is our choice.  Your choices in this matter need to be your own, obviously.  I do this because I am ill and I know that I can numb the pain in a safe way so I can be intimate with my husband.  I celebrate that, but my opinion is my own and everyone is entitled to their own.  There are a million ways to improve your sex life.

Happy sex does not a happy marriage make.  There are so many other factors.  I hate to sound cliche but if you don’t work on your relationship with your spouse you aren’t going to be happy.  I love being happy.  I have learned that as long as I have my husband and my kids that is enough for me.  It took a lot of work to get there and it takes a lot of work to keep four people happy with one another.

Does this mean that I feel alone and unappreciated occasionally?  Absolutely.  Does that mean that I hate my life?  Absolutely not.  I couldn’t be more proud of my teenage sons.  My husband busts his ass at construction to support the family.  I appreciate him every day.  We are a very tight knit family and we all love each other very much.

Look around you when you are at your home, in your car, or even your office.  Most of you should be able to identify some “things” that your partner does for you.  That is a display of their love and appreciation.  Even if they don’t say it with words, folding a load of laundry, or setting the coffee timer for you, or checking if you need anything from the store on their way home; these are all ways that your partner says I love you, without using the words.  So, the next time you are thinking that no one notices what you are for them remember my tip.

I have watched so many relationships disintegrate because people are unwilling to deal with the hard stuff so they give up.  I understand that some relationships are past saving, I thought mine was at one point.  18 years later we are still going strong and I am still having multiple orgasms, because they are not a myth.

The moral of the story?  It is possible to maintain a happy marriage and a wonderful sex life.  If I am debilitated and I can make it happen, anyone can.

Obviously I cannot guarantee you multiple orgasms, I realize that I am a very lucky girl.  I can promise that no matter how bad things might seem, they will look up eventually.  I can promise that if your marriage is worth saving you must work at it with your partner because if you don’t the problems only get worse.  You cannot ignore the problem and expect that things will improve on their own.  That isn’t how it works.  You have to climb in the trenches and get a little dirty with each other to work towards true happiness.