i’d like to introduce you to fibromyalgia

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During our spring break, I made a promise to myself that I would use different parts of my body. I would give my right side, arm & back, a rest from blogging. I would give my physical therapist a break from having to place my vertebrae back in their proper places every. single. Friday. morning.  POP, BANG, BAM. He uses a pen to mark the vertebrae that has wandered out of alignment.  I call those marks my temporary tattoos.  I look forward to Fridays like a child looks forward to Christmas morning. I am able to do things during the week because I know he will put back to rights.

Or as close to right as I’ll ever be.

I have a pin board on Pinterest titled, ‘my old body.’ (Amy_B_Saab). During my vacation i used my iPad to search for advice on coping with the 90-year-old body that I reside in. I’ve been in my 90’s since 2007. While my search for Fibromyalgia was informative, I kept coming across pictures of spoons, or jewelry with spoons. So I googled spoons & Fibromyalgia…i came across a story about two woman. One woman had fibromyalgia & the other women knew of it, but didn’t understand it. (I will name the women…the one with fibro is Amy, the other is Hannah.) Hannah knew Amy had fibro, but didn’t understand its effects to Amy’s daily life. To explain what her life was like, Amy gave Hannah 12 spoons. Twelve spoons represent the energy Amy had each day.  Then Amy told her  Hannah to describe her day. “Get up & get dressed & go to work” Amy took two spoons. “No, first you have to eat, so you can take your medicine. You have to choose the clothes that will not pinch or squeeze, that is one spoon.  I have to decide if I want to shower, if I do, that is another spoon”

Every single choice is made with consequences. This is my life. To break down the choices of deciding something is worth the risk, or if i don’t mind not having any spoons for tomorrow.

Somedays I feel younger, usually this occurs when I am feeling good enough to ‘over do’ everything, like to tear down the ivy creeping over the neighbor’s fence. This ivy has the intent to wrap it’s victims in a tight embrace, slowly killing what it has grabbed hold of. The ivy I ripped from the fence this past weekend was heading toward my hydrangeas. Ivy is a killer. That choice took five spoons & going to bed at four o’clock in the afternoon.

Fibromyalgia is like ivy. It grabs so tightly, that getting up & out of a chair is an effort, an event that I have to plan for.  Every single thing I do, I have to weigh the consequences. Consequences of every action & reaction is in every decision I make every single damn day.

“Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain & tenderness in the joints, muscles, tendons & other soft tissues.  Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression & anxiety” This diagnoses is usually given by a Rheumatologist.

Fibromyalgia can slam into people who have suffered a badass physical trauma. Supposedly, our brains can break a bit after hurting very badly for a long time. The nerves that fire pain from the injury lose their off switch. A diagnoses of Fibromyalgia usually is given a year or two after a severe car accident, or a very bad fall, or having a surgeon break your pelvis, and/or strong, constant emotions, like ‘walking on eggshells’ & outright fear. Domestic violence victims can suffer from Fibromyalgia. Fibromyalgia can come on slowly as well.  Someone can suffer from the flu, & while the cold symptoms go away, the pain during the fever, does not.

My story, briefly told…2003 last baby, my left leg, front thigh & low back HURT like a mother…after visiting many doctors & having MRI & CT & steroids injected into my left Sacroiliac joint…it was decided that the joint was bad. The joint felt like a bad sprain. Ever sprain your ankle or wrist? I had that pain on my butt.  My orthopedic sent me to a surgeon in Huntsville, Alabama, he was to remove the joint & fuse the bones together.

He broke my pelvis, then lied to me & said, “um, you have a dislocated pubic bone, you should have your physical therapist fix it.”  Ok. So six years go by.  All doctors had given up on me. I was sent to the end of the road, a pain doctor. Last May, my pain doc yelled, “WHAT ARE YOU TALKING ABOUT?! YOU KEEP SAYING YOU HAVE A DISLOCATED PUBIC BONE, NOBODY HAS A DISLOCATED PUBIC BONE!!” I love my pain doctor :).  Due to chance, I had brought my X-ray taken after the fusion of my left S.I. joint. He places the x-ray against the window of the exam room. And he freaks out.

“OH MY GOD!!!! YOU DON’T HAVE A DISLOCATED PUBIC BONE!! YOUR PELVIS IS BROKEN, YOU’VE BEEN WALKING ON A BROKEN PELVIS FOR FIVE YEARS!!”

(This is important. If a patient is told they have ‘something’…that isn’t true, THAT IS A LIE. The patient will tell every doctor they meet the same lie the doctor told them. BUT, all these doctors do not correct the patient. The doctors hear the lie & dismiss it as a mistake on my part. So if a doctor tells you something that doesn’t seem right…ASK QUESTIONS!)

“What do I do?” i asked Dr. K.

“If you were my wife, I’d send you to John Hopkins, Tulane or Vanderbilt. I would send you to an Orthopedic trauma surgeon.” Says Dr. K. I went to Vanderbilt b/c it was four hours away (sitting in a car longer then 30 minutes seizes my muscles), Dr J.M. Evans put me back to rights as best as he could.

The trauma surgeon told me that he doesn’t see patients like me WALK into his office. He said to break a pelvis it takes a bad car wreck, being hit by a train or falling out of an airplane.

My children don’t really remember the powerhouse I once was. I was once a woman who couldn’t hold still, i was strong as a pack mule. I have three children– all they remember is me, broken. My children are strong, caring & too mature for their ages. They know how to cook, do laundry, vacuum & mop. My children know that I get myself lost on my computer to find distractions so I don’t have to feel as much.

My 12-year-old daughter has run over 200 miles this year, for cross-country & track. She has had two track meets. They last five hours. My husband goes, because he can sit for hours. I’ve never been.  The thought of sitting that long is akin to sitting on a bed of nails with ivy growing around me & squeezing to the point nauseousness.

Last night after my twelve-year-old daughter came home (after 7 hours of school, three flights of stairs over & over, then running three miles) she sits down & makes me a schedule so that I can see one of her short races. She map quests the school where the event is being held, she staples all the papers together. She does this…IMG_6523 IMG_6525 IMG_6522 IMG_6521 IMG_6520 IMG_6519

The last post-it note is on my bathroom mirror (she left three post-its). Her efforts took about an hour. It would have cost me a spoon to do what she did. I will gladly give her the spoons required to see her 10 minute race.

I have to plan out every damn detail of my day. I think there are benefits of becoming slow. I think they have improved my photography. I sit & edit my images. I buy flowers & dig in the dirt. I play with graphic design. The things around me shout to be noticed & I never would have heard or seen them, as well as I do, now that I am slow. I am a mother of three, I am an artist, photographer, keeper of husky, snuggler of cats, a reader of many books, a muncher of popcorn when I’ve lost all my spoons & have to go to bed.

I am not just Fibromyalgia or a broken pelvis. I try not let it define me. I try to put it out of my head. I’d rather put my hands in the dirt, or my camera to my eye. and i try to forget to count my spoons.

 

47 thoughts on “i’d like to introduce you to fibromyalgia

  1. I first heard about the spoons analogy about a couple of years ago from my now 20 year old daughter. It came close to being an explanation of what she goes through each day, as you do, that she thought would be understandable to others. I agree. She has been suffering from chronic pain for several years as well, from what we now know is Lyme disease, mold poisoning and various other issues as well as a genetic disorder (MTHFR) that causes the inability to detox well and a variety of other issues.
    Like you, she is an artist and all-round creative person. Her art and photography seems to cut through the pain and as all her focus goes to that instead and she comes alive. It is amazing to watch! She put aside her nice (heavy) camera for a little instant deal when the first became too bulky due to her weakened state at the time. I hope and pray your health improves as Christina’s is doing now after so many years. God is able to heal you still. Like her, you are an overcomer each day and you are teaching that to your children!

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    1. Dear Dawn, thank you so much for sharing your daughter’s story with me. It helps me get through the hard days. Art is the only thing that takes the pain away completely. I am getting stronger & if it wasn’t for this blog, I think i would have withered away. Blogging has kept my eyes open & my mind focused (most of the time) of things outside myself. I’m so glad your daughter is doing so much better. I think artists are far more sensitive to life, we are all sort of ‘princess & the pea’ type people. I guess to be an artist, is to see & feel a bit more then most. Maybe? Thank you so much for your encouraging words. ~amy

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  2. I feel your pain. I deal with it too and have for 10 years. It ebbs and flows. Inflammation is a huge contributor I’ve found out. No dairy, not too much wheat, eat clean…blah blah. I hope you feel better soon.

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    1. I’m sorry you suffer too, Laura. Chronic pain is a constant battle. I had a fantastic week & then Friday brought down rain & I curled into a little whimpering ball. Inflammation is something i cannot deal with as far as medications, they effect my moods to severely, I do chew baby aspirin & use a lot of ice. I’ve not altered my eating, because I don’t really feel like eating very often. Thanks for reading, Laura. ~amy

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  3. Oh Amy, I so feel for you and this terrible pain. I know how it must hurt that you feel you can not do what you want to do for your family. But I can promise you that you actually succeed in being a totally brilliant Mum. And the rest of us can only stand back in the shadows of your dazzling creativity and joy. For many reasons, you are not quite in the place you want to be, but even with one spoon, you make more than some would do with 10.
    Being a restless creative person is hard and we come alive when we push to the edge. It is hard to do that and hold back energy. I feel most alive when I am going too far.
    Take care dear Amy,-Karen

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    1. “Being a restless creative person is hard & we come alive when we push to the edge” I could’t agree more. That sums up my artist life perfectly, it just costs me a bit more know that I’m older. I seem to have used up my get out of jail free cards. Thank you for words I’ve been unable to put into make sense of. ~amy

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  4. Ugh! I’m so sorry you have to deal with this too. The worst part for me is not being able to “mom” like I feel I should. My oldest may remember the “old me” but my middle child and my daughter will only know me as this sad, tired, can’t-do-stuff, old lady. I’m 34. *gentle hugs*

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    1. Steph, we can only do our best. I tell myself that my children are far more mature & self sufficient then others. It is our job as moms to give our children the skills required to get through their own lives. My middle daughter once said to me, “Mom, some mom’s bring cupcakes to school for their children & I know you are not that kind of mom. But you have an art studio & teach us how to make art, so I think I’m really lucky. I’d rather have that then cupcakes” She has no idea how much that sentence made me feel. When I start to feel like a guilty, useless mother, I remember her words & gain strength from them. I hope that you find a way to forgive yourself for not being what you think you should be. And just be the best you as you can. I no longer ask for gentle hugs b/c I read that hugging tightly releases hormones that improve your health. I tell my family to, “hug me, right” & they squeeze & hold me. I focus, not on the pain, but on the feeling of being safe, warm & loved. It helps a great deal–because I know I will hurt again when they let go, but maybe just a little less so. Big squeeze & find a reason to move, find a passion to impress your children with. ~amy

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  5. So sorry to hear… I know what your going through, I live with pain… I keep busy and try to focus of other things and it becomes more bearable… I will keep you in my prayers… Love, Lor

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    1. I would love to have a pen pal with the same struggles to share them with. Do you write of your pain often? If I keep busy, I do much better, but I still have to be slow. I will keep you in my prayers too, lumar1289. 🙂 ~amy

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  6. Amy, thank you for sharing your story with us. I’m sorry that you’ve had to endure this pain, but I so admire your courage and tenacity.

    I’m a believer in the saying “everything happens for a reason”, and perhaps, in your case, this happened so that you could raise such a loving family, or maybe so you’d become a better artist, (I’ve long enjoyed your photography), or maybe it was so that you could be an inspiration to us and everyone else you meet.

    Whatever the reason, I wish you good things, Amy. You’ll be in my prayers tonight.

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    1. Thank you so very much, Ed. I am a believer in “everything happens for a reason” too. I guess I must have been moving too fast to see life around me. Slowing down gave me the chance to be able to walk outside my house & see every single beautiful thing out there, & snap it up & share it on this blog. Thank you for your compliments & your prayers. Your words rocked me. And I thank you for that. ~amy

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  7. I am impressed with your strength and resolve. Not sure I could deal with this as gracefully as you. I hope that you continue to find solace in your wonderful family and your art (which is wonderful)too. Take care

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    1. Nora, if you asked my family about my behavior through the last seven years of my life, the words “strength & resolve” would not enter the conversation :). When one member in a family of five is down for the count, everyone suffers. I was able to write what I did b/c I wanted to show people how resourceful my daughter has become b/c of my experience. I was so proud of her & her determination to get me to the track field to watch her run, at least once. I am very grateful for your words & your compliments. Thank you so much for taking the time to read them. ~amy

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  8. I am so sorry to hear of these daily struggles! And you produce such hopeful, inspiring artwork amidst it all. That much more valuable for the struggles you go through. Thank you for sharing this story of courage!

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  9. Hi Amy,
    I had never met another woman that has gone through a similiar experience like I have. I loved what you wrote and your description of what life is like. It was like you had read my diary and copied pages out of it. It was like you put into words my feelings and challenges but you described it in your own unique way. I too carry those spoons.

    I had wrote to you about this before. I had wanted to write to you to talk about it in private. Hearing your words made me relive my own experience. It hit me harder than I expected. I haven’t contacted you because I just wasn’t ready yet to share my experience. I was in a state of shock because I had really felt quite alone for such a long time. I too came to the realisation that I have to guard those spoons like they are rare priceless artifacts. They should be used sparingly.

    I tried hard to hide this part of my life from people. Years ago I was ashamed and embarrassed that my body betrayed me, Especially after doctor after doctor finding nothing wrong with me. Then doctors began treating me like a hypochondriac and then a psyche case. It was my God mother who finally gave me the push to keep fighting and find a doctor who would listen. She told me you know your body better than anyone else. It is telling you that something is wrong, otherwise you wouldn’t be in such pain. I like you finally found one who did finally validate me by finding the problem.

    I find that you are an amazingly couragous woman to share this part of your life. I understand that you keep looking back to the woman you once were who was healthy. I am glad that you have come to the realisation that you are even more now. You need to look at all the things that you have accomplished despite your health conditions. You have shown your children how to strive to thrive what ever life throws at you. You need to give yourself credit that you have been a good role model. You have done your very best to be the best mother that you can be. No one can ask more from you than that, not even your children.

    Thanks again

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    1. It is a wonderful gift you’ve given me. Your words & your courage to continue to find the answers is very admirable. With so many people looking for pain medications for recreational drug use has been detrimental to people who live in our painful bodies. I am happy to say that my i’ve proven my worth & need to my wonderful doctors. They work with people like us & understand after a few visits that our words are the truth. It is hard for anyone who hasn’t lived with chronic pain to understand what life is like. BUT, i’m ashamed to admit when one of my family members is suffering a cold or an injury, i have little patience for them. I have to tell myself that there suffering is real & not a weakness. Strange that I would be so unsympathetic to anyone one other then myself. I read a life changing quote, I cannot remember it verbatim but it was by Maya Angelou, “People won’t remember what you did, but they will remember how you made them feel” something like that. I realized that if I made everyone in my family uncomfortable & distant, then that is the memory of me they will carry with them the rest of their lives. I don’t want to be remembered that way. That is the biggest reason that I’ve found to stop hiding away, in the back bedroom, saving spoons. I had to get up & live my life & spend my spoons. I am so very proud of who my children are & what they are becoming. It is very powerful to be a giver, to donate ones time & efforts in helping another. I no longer wish to be the taker. My life will be lived within my limited boundaries of energy. I will live, doing what I love & when I can no longer do so, I will invite them to visit with me. I’m having a difficult time trying to respond b/c wordpress is giving a little rectangle in which to do so. I hope that you will contact me & consider me someone to both give & receive support. Share information about how to live life as best we can. I am very happy to have met you. Although I don’t know your name. I hope that you will keep in touch with me. My email is asaabsfables@gmail.com. Be well & strong & google the story of Fibromyalgia & spoons. The story changed my life. ~amy

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    1. Wow, thank you so much, Pam. I am grateful that you took the time to read it. I had to share my daughter’s attempt to make my day work for her & for me. I’ve not gardened much today. Just picked a bouquet of dandelions. ~amy

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  10. Amy, after reading this I have to recognize that in an important aspect you’re a lucky girl. You are a very strong and talented woman and you have a wonderful family. Sometimes bad acts in our life makes us stronger and better. Anyway I hope pain will go someday and love will stand around you.
    A big hug,
    Rafael

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    1. Hug, received, Rafael. I am grateful for it. I am lucky in so many ways. When the good days come, it feels as though heaven has descended upon me & I can fly. I land in the bed the next day, but it is always worth it. Thank you for reading the post, means a lot. ~amy

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      1. You deserve it. You are a role for all of us for your perseverance and courage.
        Go on! It doesn’t matter if someday you fall in hopelessness . I’m sure you’ll get up with renewed strength.

        Have a wonderful day,
        Rafael

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      2. Rafael, you do have a wonderful way with words. Thank you so much for taking the time to give them to me.
        I hope you have a wonderful day, week…forever.
        ~amy

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  11. This is a very touching, human and courageous story. I feel honored having read it. May God bless you and yours!

    By the way, you’re a kick ass photographer!

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  12. Wow, what a story! You have a wonderful, supportive family so you have to be strong because they need you as much as you need them. The day will come when you’ll all look back and think that this experience made you even stronger as a family; full of love, determination, dedication and support for eachother. I’m looking forward to the day when the Sun once again will shine bright upon you and your family. Untill that day never give up, never give in, everything happens for a reason and that reason one day will be revealed to you.

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    1. Eva, thank you. You wrote about what my family goes through with me so beautifully. I am grateful that you took the time to read it. I’m very grateful for Sophie’s efforts yesterday. She understands everything so much. ~amy

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  13. I have tears in my eyes as I am reading this. Wow, Amy. Thank you for sharing your story. I wish with all my heart that you could be free from this pain. Your family is awesome. So glad that you have them by your side. Sending happy healing thoughts your way.

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    1. I am too young to be this old. 🙂 But there are much worse things. Remember to be grateful to your health because it is a blessing. Cheers to you my friend.
      ~amy

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      1. I am totally ignorant on this subject of your pain… Did it just one day show up or were there tell tale signs.. Enlighten me…

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      2. My mom says that her family tree are people made up from leftover peasant parts. My mother is very funny. Her side of the family has a history of a bad left sacral iliac joint. It pained my Grandmother, mother & my uncle. I pushed my joint past the point of remaining useful. Pregnancy X3 & flipping houses, climbing ladders over & over to paint the houses we had bought to flip caused the joint to turn from a rubber band to play-do. Every pregnancy caused extreme pain, but then after delivery of my two daughters, the pain would disappear. My third pregnancy was too much on my 5’2″ body. SI joint pain felt like a sprain in the low back & pain radiated down my front left leg. Fire. The “solution” was to have the joint removed & having the bones fused together. I was sent to an Orthopedic surgeon in Huntsville, Alabama. He had developed a new, less invasive way to fuse the bones together. I was part of a study. I was supposed to get up & walk out of the hospital afterwords. While he was removing the joint, he broke the pubic bone. My surgery lasted two hours longer then it was supposed to & the pain afterwords was so intense that I could barely breath. I was released from the hospital & sent home three days later. During my first post op. he told me that my pubic bone was dislocated & to have my physical therapist put it back together. This was an outright lie, because there is no such thing as a dislocated pubic bone. Every doctor & physical therapist dismissed my words as ignorant & thought I was an idiot- for seven years. During those seven years, the pain was no longer isolated to just the injury, but everywhere. It hurt to be touched. I was diagnosed as having Fibromyalgia in 2009. Then I was sent to a pain doctor who discovered the underlining cause to all my problems. That is the story, as briefly as I can tell it. Thanks for asking! ~amy

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      3. Tell me you went and found the best lawyer you could. Dislocated pubic bone? I’m no doctor but how can it be dislocated? A million dollars for pain and suffering would cover a lot of physical therapy… Ouch! I’m glad you shared your story with me… I send you white healing light…

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      4. I am looking into a lawyer, but I am not supported by this decision at all. I did sign papers saying i understood there would be risks & I would have learned to except my life as is had he informed me of the problem afterwords. He didn’t, the hospital too kept this a secret & I’ve found the doctor is no longer there. But I need support in finding out why he thought it would be ok to just lead me blind. Wish me luck in finding the answers. Thank you so much for your SUPPORT in finding those answers. ~amy

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    1. When you were listing the things that you ‘were’ you failed to mention ‘writer.’ I’m so glad I took the few minutes to read this powerful story. You are super talented in so many areas !

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      1. My dear Linda, I would never admit to being a writer. I can destroy a sentence at any given moment…however I am greatly appreciated that you took the time to read my story. With Sophie’s efforts to get me to her meet today, I had to share her hard work. Because living with someone like me hurts everyone. I’m glad Sophie understands that. Love you & see you in a few weeks. Maybe I could carpool or follow you to the Camellia garden club meeting. ~amy

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    2. Thanks John. I am better today & grateful for it. You lose your health & you’ve really lost a great deal. I pray you stay healthy & happy & remember to be thankful for it. ~amy

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