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Shopping can Suck It...

Now, this will be a post on the lighthearted side.  I have thought of some more fibromyalgia hacks that make my life more bearable.

Specifically shopping.

Admittedly, I have never liked shopping.  I have very few needs for clothes, other than whether or not they are comfortable, and I try to get dressed most days, leaving the lazy no bra days as a special treat all for me.

Now..  I have noticed lately that I desperately need new bras and panties.  I tried to get some new bras and my boobs stuck so far out the side under my armpit that I figure they must not be my size anymore (no, I didn't try them on).

I needed a pair of shoes for a formal occassion and I was in the shoe isle by myself.  I ended up picking a pair that is size 11.  I wear 8.  I put them in the cart and said to my husband that I didn't think the shoes were right.  He said why would you say that?  I said I got overwhelmed and just picked a pair and I think I messed it up.  He said, you have been buying shoes your whole life, how could they possibly be wrong?  We quickly learned that, yes, oh baby Jesus YES I could have gotten it wrong.  They fit my husband.  I keep them because it is hilarious.

The worst thing I have done while shopping?  Well... First let me explain why it is the worst, years ago I worked at Walmart.  I managed the underwear/ladies/bras etc departments.  It was my job to know where everything went and what everything was called.

I needed underwear.  I knew that I had gone up in size, that was no problem.  I actually got the right size...  however as you will see, Briefs are not brief.  I swear to you I didn't even think they sold underpants like this anymore.

They do..  they make them like this and I bought a ten pack.  I can't even wear them, they make me feel like I am 100 years old.  I wear sensible panties, but DAMN.... Share in my shame, and my pic of  "The Underwear Disaster, circa August 2014"

Laugh, I can't stop, I think it is hilarious.

Click this link to go to my Facebook page, it's the lighthearted side of this disorder...   Go forth and LAUGH

The moral of the story is this.  When I have money and I am shopping (unless it is the craft store), I need an adult.  Once, we were having a party and I got 4 boxes of the 18 packs of eggs.  Figured we would have a big breakfast after the party.  Now they know...  Tammie needs an adult when shopping.

They bombard you in stores, there are so many options and choices and for whatever reason (haven't figured it out yet) I can't make up my mind, or I do and one second I am going, the very next I am not, and round and round.  I don't know why our brains do that yet, but I promise to find out.

Oh, and I have been in a couple of Walmarts that have these ad players that have video at the end of the isles.  Watch out for that because I came around a corner and one started it's thing right as I was right there and I fell to the floor.  So yeah..  watch out for those too.

Families, Loved Ones, How Can They Treat me Like This?

I have been hearing some talk lately on boards, with people talking about their families and how they are reacting to those in the family that have fibro.  I know the pain that you feel when everyone around you thinks it is in your head.  On top of feeling like shit every waking moment, and most of the sleeping ones, we have to deal with people who are supposed to love us treating us like we are monsters?

I have found some old things that I wrote.  I want to say that through hard work and patience from both me and my immediate family we have made some amazing strides together in navigating this hell hole that is Fibromyalgia - the disease that fucks every single thing up and no one knows why...  disease.

Okay, so here is one from November in 2012

Can someone steal your smile or your laugh?  Yes, unfortunately I have found that can happen.  I am broken of body, that has been the case for years.  This is hard on a family.  I understand this, more now since The Fight.  It is hard not to be selfish when you are in constant pain.  It is hard not to be selfish when all you can do is wonder what the hell is wrong with you? 

I am 36 and I can barely carry my tiny shitzhu out side to go to the bathroom.  It is ridiculous.  It is hard to see past that, even if you think you are working on those specific relationships.  It was hard for me to truly feel badly for them until recently.

I accepted my lot.  I accept that I am broken and cannot do most things I used to enjoy.  I accept these things.  It made it easier to see what was going on around me and understand just how much it must have sucked to watch me deteriorate these past few years.

That said; it happened in one night, I screamed at my husband to finally get him to admit it, he screamed back that my illness is fucking this family up.  I am not faking, or making myself ill, this is not fair.  I have made my bed now, and let him do this.  He has gotten away with hiding me in the corner, looking the other way when I am hurting.

There is a surgery that could help a lot, especially with my hands, arms, and neck.  I asked my 17 year old son what he thought of me getting this surgery.  He responded pretty much by saying, don’t do it because if they fuck you up worse then we have to take care of an invalid.  Yay.. my life rocks. 

I can hear the video games that I can no longer play.  I can hear the sounds that used to include me.  Now I hide so I don’t upset the family with my pain.  This is not depression pain by the way, I am in actual disc crushing nerve pain.

END

That was forever ago.  I have come a long way since then.  This was after I accepted that I was losing my ability to create things with my hands.  I mourned that, Yet, now I am trying.  I do what I can, even when beading something makes me cry, but I refuse to stop and I have made several things that are pretty cool.

I used to never think the things I made were good enough, so I would throw them out or keep them in some random box.  When I had to quit my "normal" job because of the fibromyalgia I thought for a long time that I could craft and sell things, make some money that way to help support the family.  I was quickly disabused of that notion when I lost the feeling in my hands.  Yet now when I work on something my oldest gets angry.  I am happy with my accomplishments.  He is angry and mean to me still.  

I am sort of looking for pictures and more stuff that I have written.  I want to stress here that we cam through the storm and for the most part things are great.  I have my husband back, more amazing than ever.  We came through it..  mostly..  a work in progress with some of us..  nonetheless, we are doing it and so can you.

Teenagers, Broken Bodies, Goddess Within

Remember when a shower was refreshing?  It was a way to wake you up, make you feel clean and relaxed and ready for your day.  Now, it is a thing to be feared.  I want to take a shower every day, but I can barely remember when they felt good.  Now it is just fucking exhausting.  I hate taking a shower. 

However, a few handy tips I can give here are these..  First I live with boys and hesitate to lay down in my tub..  I have to trust them to scrub it out because fibromyalgia, scrubbing the tub was one of the first things to go.  Okay, I digress..  lay down in your tub, fill it with water and put Epsom salt in there.  Yes, I know that sounds like bullshit.  How could that work?  Well, I thought that forever and then I took one..  it works.  Don’t ask me how.. but it does.

                My kids are teenagers.  Both boys.  One is 18 and one is 16.  My older boy is hopefully going through a phase, because if he doesn’t shape up, there is no telling what I might do.  He is angry that I got sick when they were tweens and that I messed up a lot of years for them.  It took me a long time not to get mad at that fact.  I am suffering, how dare he chastise me for it?  Remember, your family suffers too, and there is very little they can do to help.

 

                Be prepared for a possibly difficult time when dealing with your kids and your illness.  I am able to talk to my husband, about my journey and the things I am learning.  My son, however, still asks every single time I tell him to do something because I can’t, he has the same reaction “huff puff, roll his eyes, then ask me why the hell I can’t do it”.  Now the real clincher here is that I swore I would stop talking about my fibro.  I rarely allow myself to say the word in the house.  So what to do?  For now I just walk away, this is another unsolved issue for me.

This is obviously one of those situations where I am between a rock and a hard place.  He wants to pick the fight and if my husband isn’t around he follows me if he is feeling extra nasty that day and it is easy to ignore, but my body can’t.  My mind is fine, but as I am wont to say to my husband “tell that to my nervous condition”.  It takes me hours to calm down.  I know that he is getting his teenage aggression out on me, but I swear I am THIS close to knocking his head off. 

If you are the parent of a teenager, one piece of advice I can give you is this one; when they are acting like little ass holes, they are venting.  Even if they are saying horrible things to you, or yelling at you, or showing you no respect, that is their way to process, try not to let it hurt your feelings… It’s all them.  It has nothing at all to do with you. 

Shower tips, I turned a 5 gallon bucket over and covered it with a towel and took a shower that way, easy to maneuver around and stand up, because you aren’t starting from a lay down position.  I have my hair in dread locks.  Not because I don’t want to wash it, I still have to and it is actually a bit more difficult, worth it.  I wanted them all my life, I started this new version of myself and I wanted dreads, so I have them.

Let people back into your life slowly.  Friends leave you, they think you are a spaz and don’t want to be around you.  You will find new ones.  There is something to be said for putting our visions for ourselves and our dreams in our minds, I promise you..  4 years spent in bed, 2 of them trying to stop my heart every day with my mind. 

I put on facebook that I needed a tie dyed Mary Poppins.  It came true thanks to my good friend, she knew exactly who I was looking for and we are now best friends on the internet.  Never met in person, but when you have fibro it is hard to get out, nice to have digital versions.  Also, I can keep up with my thoughts when I type, not so much when I am talking out loud.  I get all skippy and strange, then people look at me weird and I don’t want to tell them anything is wrong and it’s a horrible situation, one I am still working on a solution for.

I recommend that you get a letter from a doctor saying that you have fibro.  I don’t know if it will work with police, but we have to be careful.  Now I go out and I smile when I can’t walk, I laugh when I go down…  I look like a drunk person.  With the way police jump the gun we need to be very careful.  Let them know immediately that you have a nervous condition.  (It’s neurological, not nervous, but nervous is easier to remember).  Have the letter if you can.  I worry about my warriors..  be careful if this happens to you.

My husband took the dog for a walk today and I sat here while he was out and I got sad.  I want to take the dog for a walk.  Granted, the flare I am having today makes it tougher, but it is still out of the question.  It’s normal to still get sad.  It’s normal to want to kick something (I used to have dreams and I would wake myself up kicking), it’s normal to feel like you are broken..  You are broken.  It’s okay though, because broken things remake themselves into something new, stronger than you thought possible, and amazing…  even with all your quirks and shit you do.

Laugh it off and fight on....

Fibromyalgia 101. Must Read if you Have Fibro

I laid in my bed for two years and tried to stop my heart so that I wouldn'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.

                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. 

Click this picture to go to my facebook page.  Lighthearted side of fibromyalgia.

Click here for cannabis site
Click here for another one
Click here for an interesting article on how effective cannabis is for fibro

                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.

                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 or abnormal 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)

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 addict for 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.

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.

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.

My Story Part 1, R Rated

                I sit here, with writers block because I have so many ideas that I can’t slow down enough to pick one and stick with it.  So, I decided to type with my brain, sort of willy nilly, and see what comes out.  According to my husband and my teenage sons, it is usually something less than appropriate, to downright embarrassing. 

                When I was 15 my dad finally left us.  I say finally because he was 6 foot 5 inches of ass hole.  He was evil to my mother, cheating regularly (although I found this out later on) and life was generally better when dad was not home.

                 I was brought up to give a shit what others thought of me.  I grew up in a house where I got sent every Sunday with my grandmother to church.  I don’t suppose we had much money, but my mom and dad built our house when I was in my tweens.  It was a great house, I see it almost every day.  It hasn’t ever really been my house.  I know I lived there for a while..  but after I moved from there I stopped having “houses” in the traditional sense.

                When I was six years old my 17 year old cousin babysat me and touched my bathing suit area.  I don’t mean to make light of this, as I would learn later that it truly fucked me up in an elemental way that took years to get over.  I see him all the time now also.  I have seen him once, other than in passing,  since I was 18 and he had the nerve at that moment to talk shit about how I looked freaky with my tattoos and I should be ashamed.  Because I was not Tammie Version 3.0 at the time I simply went back into my house and wrote him off.  I hope he does it again, Tammie 3.0 takes NO shit.  Especially when it comes to pedophiles.

                After my dad left my mom for another woman I didn’t see him for a long time.  Then one day months after he left he pulled into the driveway, I ran outside to see him and he looked at me, deadpan, and said “Thanks for the fathers day card” and pulled back out of the driveway.  I was 15 when he did that, it hurt so bad that I thought I would die from the pain.

                I went a little nuts then, and a little more, and more until my mother thought it would be best for me to spend a few weeks with my female cousin, who was a favorite of mine.  Things were pretty great there, I wasn’t fighting with my mother, my cousin and her husband were closer to my age, so understood me more than my mother could.  The downside to this plan was the fact that their marriage was in trouble and I had to listen to them fight nearly every night.  I heard them beating the shit out of each other too.  It made me sad.  I moved back in with my mom.

                After a couple of long term boyfriends when I was 15 and 16 I moved straight onto that thing that all damaged little girls do; sex with as many boys as I possibly could.  I knew that this was not healthy.  I knew on some level why I was doing it.  Of course I was out of control.

                My mother decided it would be best for me if I found a man, and settled down and gave him some babies.  Her and my cousin found “just the guy” and off I was to my first blind date.  I dressed up.  I wanted so badly to make my mom proud and to love this guy enough to marry him.

                We went for ice cream, then directly to the woods so that he could convince me to suck on his dick, until I relented. Now, I already said I had a very healthy sex life, but those were all guys that I wanted to have sex with..  this one?  Well, I didn't.   I had to lie to my mother, she still doesn’t know this.  She would have been so upset to learn this truth, which of course meant a second date.  Let me say here that this guy was short.  Shorter than me.  His knob was also a disappointment, to say the least. 

 He took me directly to a hotel room, no dinner.  I was hungry and he got me food from the machine in the hall.  This was my last time going anywhere with this guy.  My mother forced me to speak to him again, when I felt more than a little raped by the dude, but I had to speak.  I had to tell him that I want to have fun.  I don’t want to be tied down so young.  I was barely 18…  I couldn’t say, you are a raper and I hate you…  think of the scandal.  I was young and stupid…  No wonder I chose to join the Marines and leave as soon as possible.