Stayin' Alive

It's Friday night 30 October and all I can think about is getting dressed up and going out with the ghouls, undead, and slutty nurses to go dancing.  That was my thing back in the day.  I was talking to my nephew's fiancé as she was giving me a massage recently and we were talking about the good old days when I was younger. I used to go dancing every weekend.  I love to dance.  Always have.  I think it comes from my genes, both sets of grandparents love to dance and just thinking about dancing puts a smile on my face...look at me...see??  I did dance  recently at my cousins' wedding.  That was so much fun.  I could've danced longer if of course my body didn't seize.  I ended up doing that dance from Airplane where the man gets stabbed and Julie Haggerty doesn't realize, and she points to her back unaware that the man is in pain.  Yep, that was me.  In retrospect, swinging my dance partner around the dance floor to recreate the dance scene with Robert Hayes (still makes heart go pitter patter) in retrospect it may not have been the best for my back, but I was out to impress...I mean a girls gotta do what a girls gotta do!  People kept complimenting me on my performance of the robot but it was purely un-intentional.   It really did kind of peeve me because I used to be a rather decent dancer, not to toot my own horn.   Well, now I know.  Prior to any limbo contests or a night of dancing, I need to limber up,  you know, do a yoga class and stretch before getting on the dance floor.  I can just picture me as Fat Amy in full leotard and leg warmers, bubble gum pink from head to toe at the barre in a club stretching in front of some hot guys.   I just might do it!  Anyone dare me?

I'm an Ant...I Mean Aunt

If you open up my heart you will see it belongs to my faith and my family.  That is my everything.  As a very young child I can remember my grandma teaching me to pray to los santos and the rosary.   My faith was my special relationship with my grandma.  I can't remember a time of not knowing that there is a God, my friend whom I could talk to.  She and my mom always told me to pray because Heavenly Father listens to the children.  Believe it or not, I can remember crying on my birthdays because I thought He wouldn't hear my prayers anymore.  One day my mom heard me and asked why I was crying and I told her then she told me we are all God's children.  I thought, well why didn't you tell me this before?!

Many years have passed and my sweet grandmother has been with Heavenly Father for many years now and I still treasure my relationship with God.  I don't have children of my own but I feel it is my obligation to pass down these traditions.  Not out of obligation, but because of the joy, comfort and guidance this relationship has brought to my life.  I can't tell you how much joy my nieces and nephews bring to my life and, oh, how I want the very best for them. 

Now I want you to know something, I'm the aunt that gets down and dirty with the kids...on the floor, or dirt, wherever, I'm never afraid to get dirty or embarrass myself.  In a way, that is why this illness has been difficult because my body won't let me do the things I used to.  About a year ago my 7 year old nephew Jesse asked me, "Tia, are you always going to be in bed?"  It broke my heart.

As I said before I do have a lot of nephews and nieces.  The oldest is 30 the youngest is 1 week (he is my great-nephew)!  It is so wonderful to look into a newborn's eyes and wonder what will this person accomplish?  What will this person witness in their lifetime?  Who's lives will they influence?  Who got goosebumps?  So exciting, right??!  That's what I see with each of my sweet nephews and nieces. Not to mention they are all so smart.  I heard a quote once from Sherri Dew that I say to my nieces, they will either end up ruling the world, or end up in prison!  Ah yes, it's a mighty fine line. :)

A Man Named Smith

I don't know why but I find solace in writing.  My eyes are killing to look at the screen but it doesn't matter.  I'm lying here at the beginning of the day.  I should be well rested and ready to conquer the world but it has been a rough four days of nausea, pain and no sleep.  In addition,  The pillow is hurting my head and neck,  when will they ever come up with something softer than feathers?  Don't they know people have pain issues, come on! Hehe :)   I really am tempted to sneak into the garage and grab a hammer just to get some rest.  Man, when a girl starts fantasizing about a concussion you know you've got problems!  I just want to sleep and be out of pain.  I used to sleep like a log. I now have sleep envy of my past self.  I used to be able to sleep through crying babies, earthquakes, in fact I could sleep anywhere...not that I slept around!!  My dog, Ninja, is always sleeping.  My brother in law says he has Fido-myalgia!  Rimshot!  See?  When I don't feel well humor makes me feel better.  Does anyone remember in Mary Poppins they go to see Uncle Albert and he tells the joke about knowing a gent with a wooden leg named Smith?  Then the kids ask what's the name of his other leg?  Well, this is my favorite pick me up, pun intended for those of you that know the movie.  When I am with my sister, Adrienne, and we are laughing and then we start on a serious subject I'll ask her, "What's the name of his other leg?" And then we will start laughing again.  For those of you that don't know the movie, by telling this joke it literally "lifts" not only their spirits but them off the the floor!

I love it.  It hasn't failed me yet.  I can be crying and think of Uncle Albert and that darn leg and start laughing.   So when you need a pick me up think of Uncle Albert and ask yourself, "What's the name of his other leg??"

The Power of Music

When I was a little girl my dad would play the guitar and my sisters and I would gather around and sing.  On the weekends, we would pile into the car and drive to Charlie and Rachel's, or another good friend of the family and my dad would play guitar with the men, there would be laughter, good food, and always great memories.  The songs sung were by Kris Kristofferson, Jim Croce, John Denver, Mexican favorites or good old classic country.  On nights when I can't sleep or sad I turn to music.  As for many, it speaks to the soul and takes me back to a different time.  Last night was one of those nights where I took solace in old friends.

My dad playing guitar while sister Samantha sings Mexican classic, Volver.  Younger sister Adrienne in stripes. 

One of my favorites is Sunday Morning Coming Down.  For me it describes the overwhelming loneliness that one can feel.  For me, this loneliness is palpable.  I'm in the basement, in the dark, by myself, always. When will it end?

Voodoo

Sometimes I feel like I have done someone wrong years ago and there is a a voodoo doll out there with pins stuck all over.  This person is extraordinarily sadistic and takes great pleasure in hitting the base of my skull over and over with some sort of medieval torture device.  There is something resembling a railroad spike entering the back of my neck, and my eyeballs surely have been pushed back into my skull joining my brain.  I have a few swords stuck in there now and again "just for kicks".  Sounds lovely doesn't it?  Feels just as fabulous, but wait, there's more!  My neck has been replaced by spun glass, the very thought of moving it feels like it will shatter sending my head rolling to the floor.  This is only from the neck up, do you really want to hear the rest?  I don't think so.
Logic dictates there is no voodoo doll but that's how I feel.  What is the reasonable explanation when you go to the doctor, they examine you after having a migraine for over three years and they say, everything is fine.  This is the part when smoke comes out of my ears and I play back the video of the past three years, shove their face into the screen and say, "Do I look fine?!"
That's the rough part, well one of them, about having FM so many doctors still think you're crazy.  I once had a doctor tell me to volunteer.  Now I'm all for losing yourself in service in my community but when I can't drive, can't work, can't move, and have a splitting headache everyday how helpful am I going to be?  I am thankful I finally found a doctor that has been helping me I just want immediate results--who's with me?  My perfect world is a clinic like the Jetsons.  A conveyor belt that we step on, go through the machine and presto, *poof*, healed!  I also just might include voodoo cleansing  :)

Somebody to Love

The other day I was at the grocery store looking fine, for once.  I had just bought my new cowboy boots and needed to break them in and unfortunately they don't go with sweats...or at least not in my world they don't.  I was looking for some coconut milk and I had just asked the clerk if they had any in the back.  I told the clerk I'm looking for two cans as opposed to a parrot (toucans-parrots, get it?) and I started laughing!  At this point this really great looking guy walks down the aisle and smiles a big smile at me.  Now, I do not have game.  I smiled back and in my mind as awkwardly as a twelve year old schoolgirl, with braces, trip over my feet, snort, and proceeded to completely embarrass myself in front of the hot guy!  Why?!

I'm tired of being alone.  I want to go out and have a social life again.  I want a man to tell me I'm beautiful, but lately the only thing men say to me is, "Okay, see you in three months."  We are all born with a need to be loved and touched and I struggle with mine.  I struggle with the fact that nobody will want a woman that is sick.  Maybe I make too many excuses.  I have a lot to give I know but when you want something so bad for so long and then a huge obstacle comes in the way it makes you think it's a deal breaker.   But is this too much of a burden for a spouse?  Is this someone's uniball? A third nipple?  Halitosis?  I know I would NEVER date someone who has a third nipple!  (Jk  I'm a card carrying member of Don't Hate the Third Nipplers).

I know Mary Tyler Moore set the bar for the working woman and I do consider myself a feminist but I also long to be a wife and a mother.  I have traveled the world, I have my degree and this is what my heart desires, wholly and completely.  But alas, this is not in my timing for now...timing.  It always comes down to timing for me.  My symbol should be a clock.  Hmmmm....maybe Flava Flav had it right somehow?  I'm always trying to dictate what should be the right timing of my life, but don't we all?  I guess for now I'll keep my eyes open for eligible bachelors and if they do smile at me I'm  hoping I don't have another meltdown.

Blessings

Yesterday was a rough day.  But amongst the weeds I found the flowers...I found hope.  I will tell you about the rough part first.  It was Sunday and since it is so difficult for me to attend services I have part of Sunday school Skyped and then the Sacrament is brought to me.  Usually it's a nice visit but yesterday I wanted them in and out, but instead, it was a sweet new family that recently moved into our church from our home town!  Of course it was great talking to them but I was fading faster than Bernie in Weekend at Bernie's!  Including the glasses!  Lol.

Following our visit, I tried to get some sleep.  Hard to do when your head feels like the detonator just went off and your head is held together by a spiderweb. Not to mention the nausea, after so long it gets painful.  For some reason the medical marijuana was not helping as it usually does.  At times like this I like to do meditation or guided imagery so I listened did.  It didn't work.  Sure it relaxed me but no sleep.

I requested a health blessing, which is something you can do in my church. I'm LDS.  My home teacher and Bishop came over (I had requested this previously) and this is what I was told: I would be blessed with sleep, courage, I need to work with my family any way possible and I will be a support unto others.  My point is I know I have a trial to go through.  I have something to learn and work to do.  Work with my family, and work with others.  I need courage to overcome the pain and the depression that comes along with the pain...and it comes!  The words that flowed out of the Bishops's mouth were incredible.  He knows me but he does not KNOW me like the words that I heard.  Only one person does and that's why I believe.  That is why I can smile through this.  I have hope, hope that this will end, hope for the resurrection, hope that I have somebody listening to me and it gives me solace to know it's not just  anyone it's my Heavenly Father by my side throughout and he KNOWS me.  Matt 10: 29-31

Mmmmmmmm Pain!!

Have you ever had had your neck hurt so much you felt as if you bent it it would snap off?  I just woke up to put out Ninja, it's 6:26 am and I need to document to let you know this is real.  I need to move.  As we know, movement is the friend of FM, as much as I hate to admit it!  The truth is the worse my neck is then my head is going to be the it will cause my muscles to seize and I will be down for several days. As Sweet Brown says, "Ain't nobody got time for dat!"   I just medicated and stretched...feeling better :)

Now when I say feeling better I mean I was at as close to a 10 as possible I wanted to scream because the pain was that bad.  Now I am at a "happy" 8.  Is that sick?  I sound like a masochist...mmmm pain!!  When you are used to it that's a part if life.

Snake Oil II

One of the many items I came across in research to help my pain was medical marijuana.  Yes, I am one of those.  It has been a blessing in my life and I know that my Heavenly Father has placed it on this earth for our benefit as a medicine.  I DO NOT abuse it and I only use it out of desperation for my pain management.  I have tried everything.  Since I have suffered for so long with FM, I have had several crisis where I have been on heavy duty narcotics i.e. Methadone, OxyContin, Opana, Dilaudid, Percocet, Fentanyl, and the list goes on.  I was receiving these pills like candy.  Refills were handed to me as freely as flyers on the street.  I was a zombie and my family didn't know me anymore.  At times they thought I was Keith Richards from the Rolling Stones...I would just start jamming on the guitar (Ok maybe not).  I was blessed to wean myself off after 6 years without addiction and I'm terrified of going back.  Those pills took me to a bad place and  were so much more harmful to my body than the marijuana.  I now do my research and find out about strains and make my own tinctures with high CBD (for pain) and low (THC) psychoactive.  With these tinctures I make pills and edibles that actually help my pain!  Yesssss finally...no more constipation!  Oh, did I say that out loud?!  Don't you HATE that about those narcotics?  Ugh!

Snake Oil

 I'm sure whenever anyone hears you have fibromyalgia each person has a suggestion for you: acupuncture, chiropractors, cupping, Reiki, light therapy, trigger point injections, dance naked under the harvest moon while dancing to " I Will Survive."   Maybe the last one was a stretch...I was wearing socks.  My point is everyone means well but it is extremely expensive, time consuming, and disappointing when I try the various therapeutic suggestions.  I have flown places, been poked prodded and had so many needles in me I know what a pushpin feels like.  As an eternal optimist I always feel let down when the therapy doesn't work or they say that it "usually " works but since I have fibro my body takes longer for treatments = $$ =  :(

Living in a basement, inactive, for several years I gained over 50 pounds.  I'm sure those of you suffering from FM (from here on in the blog fibromyalgia will be referred to as this: fibromyalgia) can attest you are often in too much pain to eat, so I would often take the easy route and have easy food = fatty processed foods.  Again, people told me, "Go gluten free", "don't eat meat," "you need more animal protein ", etc.  so I chose something that felt right for me.  I've dropped 46 pounds and feel happy with myself...did it cure anything?  No.  But I feel good about myself.  I bought a dress right before the onset of my headache.  I never wore it because I started to gain the weight and didn't have an occasion to wear the dress ( I bought it for work and church but it often has been too painful to attend church).  So my goal as I embarked on my diet at the end of April was that I wanted to fit into my dress by my birthday.  Well, yesterday I tried it on and...YES it fits!

I may not have found the answer to my suffering but I did find something that makes me feel good about myself.  As I said yesterday, we have a situation that's rough, find things in your life that will make you feel good about yourself.  It makes a world of difference -- and it's cheaper than snake-oil!

Carbonite

One of the joys of having fibromyalgia is that you can always look forward to the many surprises that await you just around the corner.  I have begun to lovingly refer to fibro as "the gift that keeps on giving".   It's 3:16 and this time it's not my neck or back but my groin, hips and knees that are having an epic battle fought between Godzilla and Mothra.  I don't know who's winning but I'm the battlefield.  Have a pain here?  So sorry, good news is that a new one will come along to distract you soon enough to get your mind off the other one!

So in my introduction I spoke about being positive and always smiling.  It is true.  I think I will be cracking jokes on my deathbed.  However, do not let this fool you, I get down, anyone dealing with chronic pain I think would.  I'm writing this blog as a way for me to reach out--did I mention I've been here in the basement for three and a half years??  Of course I've been out of the house but I still feel "trapped".  My "life" is trapped in this basement metaphorically speaking too.  I'm a very social person, before I became ill, I traveled the world.  I've been blessed to live on three continents, travel on my own and see the world.  Do you now see where I'm coming from?  I love people.  I love cultures.  I could talk to a wall...and trust me...sometimes I do :P   Well, lately it is mostly talking to Ninja since he is my partner in crime, I swear he understands.  I also want my life to progress.  I feel like Hahn Solo frozen in carbonite by the evil Darth Vader...somebody please help!

In The Beginning

In April of 2012 life was going well for me-- I had a good job downtown, saving money, happy, and great social life.  Then came the crash.  My crash.  The first weekend of April I started with a migraine.  Since then I have lost my job, my independence, most of my friends, I live in my parents' basement ( in the dark thus I call myself the "mole woman" ), and of course, in pain. The great news is I have my companion, Ninja Pythagoras, my Schipperke mix always by my side and we are the dynamic duo.   Living in the dark isn't always easy.  As I look at this screen it hurts my eyes but I have wanted to do this for a very long time.  I get lonely here and know there are others out there like me...shout out to my fibro posse out there!! Wooo hoooo!!  **Mental note-- make tee shirts for our new club. My other saving grace is I have an AMAZING family base.  Although I have never been married and Ninja is my only child (hehe), my parents are truly a blessing and my mom is my best friend.  I have one of those close Chicano families where we get together for family gatherings and we are loud and laugh way too much.  I love it!  My siblings are all crazy just like me and I wouldn't have it any other way.  I have just under one million nieces and nephews [you can tell I'm not one for hyperbole  :)  ]  and I adore each and every one of them.

What makes me smile through the pain?  Is she crazy?  Well, I'm not going to lie, slightly.  Part of it is just me, I've been smiling since birth.  I also just have the philosophy that what's the point of complaining?  I have this trial in my life and I have to make the best of it.  I've learned SO MUCH. I've grown from it.  I hate it.  But life goes on and I'm a fighter.