I’m Your Puppet

Karen Swank-FitchIn 1966, two years before giving birth, James and  Bobby Purify (and R&B Duo) released the song I’m Your Puppet. The opening lyrics go like this, Pull the string and I’ll wink at you. I’m your puppet. I’ll do funny things if you want me to, I’m your puppet.

Enduring a radical autoimmune disease and attempting to live some sort of normal life, I often feel like a puppet. Here, pull this string and I’ll make the bed. Now tug the string and I’ll get to the grocers. Yank that one right there and I will do whatever you want, as long as I get to lay down after.

I will endure the torture of moving through normalcy.
Normalcy was my life, my family, and my career. I married my husband a dozen years ago. We made it through the first year – that year when it still feels a little like you are playing house, like you are setting the tone, as if the roles are being cast in concrete, rather than sand. We struggled through the 7-year itch and opted to court each other and date ourselves back into what we deemed a loving couple. We had a graceful lull.
And then year 10 came. It brought horrific pain and odd symptoms. Puzzle pieces that made no sense.
Over time, I realized that the strings were being pulled by my own immune system.
I had glimpses of my immune system going awry in my early twenties when I had a tenacious battle with Guillian Barre. It’s not normal for one’s immune system to attack itself into paralysis.
Twenty years later, I started to feel out of control, I started to question the intentions of my body. I don’t recall singing these words, I’m yours to have and to hold…you’ve got full control of your puppet to my body. I was under the illusions that I had some governing authority over what was happening inside my fleshy self. Deep dark pain in my hips. I believed was related to having just given birth. Odd pains in my back… I brushed them off as having turned 40 years old.
A knife jab to my right shoulder blade, that brought me to tears and sent me to the Emergency Department with fears of a gall bladder attack. Someone else was pulling these strings and it surely wasn’t someone in my external world…it was all happening within my own body.
I was in a battle for control of my body, my immune system. In the winter of 2012, I started a pain diary. I noted every moment of unexplained pain, every sting of feeling uncomfortable and the myriad of odd symptoms.
I was in a battle for control of my body, my immune system. In the winter of 2012, I started a pain diary. I noted every moment of unexplained pain, every sting of feeling uncomfortable and the myriad of odd symptoms.
I noticed the pervasive exhaustion, the brain-fog, the inability to comprehend and locate vocabulary. I described in my diary, “I feel like I am a marionette and someone else is pulling the strings.”
The following day, I recall the pain in my back was so strong. I could not come up with an antecedent, I couldn’t think of what I could have physically done to have such pain in my thoracic spine region.
Little did I know, I was fusing.
By the Fall of 2012, I had finally made an appointment with my primary care physician. She and I have always had an amicable relationship and I trust her. She listens to me. I handed over my diary and she read it. She asked me numerous questions and told me that she thought that I might have fibromyalgia.
She printed a document and I started to read it. Was this the answer? Was Fibro my Puppet Master? And then she asked me how much time I had that day. (I was mostly free until I had to pick up my kids from school.) She then got on her computer and ordered x-rays and sent a referral to Rheumatology. As I was enduring those initial radiographs, my cell phone rang. If I was still on campus, I was invited to come to an appointment in the next 15 minutes.
In Rheumatology, I sat in a cool colored exam room, Googling fibromyalgia. My new rheumy doc entered the room and asked questions, so many questions.
The answer that my father had Reactive Arthritis had her turn to her computer and order more x-rays and bloodwork. After all the words, she examined me. Head to toe, she looked me over, palpated and pressed. She asked questions that I never considered and she told me to get the bloodwork completed that day.
In the lab waiting room, I started Googling rheumatology and came up with innumerable diseases. After another round of x-rays that focused on my spine, from the base of my brain to the tip of my tailbone, I headed home. Somewhat relieved that I had a word, Fibromyalgia and that I might be able to use as an answer to all the questions.
“Your every wish is my command. All you got to do is wiggle your little hand.” I was willing to surrender it all over to Fibro.
I was going to own my Fibro and I was going to champion it as my cause. I was going to call it my Puppet Master and then call it a day. I was willing to bet everything on the idea that there might be an answer.
I do show signs and symptoms of Fibro. Why wasn’t that enough for my rheumy? What was she looking for? What could be worse than pervasive, systemic pain that characterizes Fibro?
Then the blood work started to come back. SED rate…HLA-B27…C-reactive protein, Rheumatoid factor, antinuclear antibody test. Words I had to look up. There were words that no one should ever have to look up.
The results: Elevated. Positive. Present. Noted. Then I saw the x-rays, normal spines don’t look like that…Thoracic 3,4,5, are now one unit. My neck, my lower back, my sacroiliac, they show signs. Signs point to this new Puppet Master, Ankylosing Spondylitis.
I couldn’t even say the word; much less understand the diagnosis and the ramifications.
Each year, I mark the anniversary of my diagnosis with a party. I don’t look at that date with sadness, I see it as the day that I met the Puppet Master, sort of started to make friends with it. I say that I won’t hide away, that I will wear my blue, my spoon jewelry and my shirts that proudly state that I have A.S.
I will answer questions and I will raise awareness. I will lead a team of walkers and I will collect steps. I will admit that I never really had control, but I am going to at least own this thing and make nicey-nice with the Puppet Master.

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