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Uniquely Painful

I sat in the silence of a cold sterile Rheumatologist office trying to keep the time line straight in my head, because I knew the drill and I knew it better then I knew my mundane existance these last 10years. It had been minutes to hours, days to months and than to years of fighting for hope, fighting for a diagnoses fighting to be just validated! However slowly my body was dying by various degrees and I missed my strength. The strength of being the superwoman I once was. I quickly took inventory of where this new specialist was going to sit and when I looked down to make sure I was seated in the proper place the nurse guided me to, I noticed my ugly brown flat round toe leather shoes. The old Deborah was gone I knew that, because she would have laughed at anyone in these granny shoes instead of the fabulous stiletto heels everyone at work once watched for, and envied when she came into work each day. Now my life was all about flats and my fashion sense was no longer evident anymore it was like I had given up on life, well actually I did.

I knew I could not cure my shame of the things that now were my “new normal” so I had to follow the lead of countless strangers on what would be the best flat shoes, best loose fitting clothes, best things to wear, I had officially became “labelled” even though I was not diagnosed with anything, time after time everything came back normal but today I hoped I got even a crumb of something, just anything I prayed.

Faith is all I had that morning when I saw this small framed white haired doctor much shorter than I enter ever so gracefully into the room. He took a seat, opened up my massive file and began to ask me questions. Some questions were extremely personal but at this point in my long journey I had lost all humility, I no longer was in control of my body it owned me. I answered all his questions with a yes or no as he seemed to be a little distant, I was just someone else who probably had psychosomatic pain or so I thought in my head.

I had officially became “labelled” even though I was not diagnosed with anything. Time after time my results came back normal, but I hoped I got even a crumb of something, Just anything I prayed.

The doctor proceeded to rub his hands together as if he was trying to warm them up, he asked me ” May I touch you?” My reply was “Of course” he than started to push ever so lightly touching with his first two fingers into certain pressure points of my body. I let out my first cry of pain and it startled him to the point he took a step back and recomposed himself. He reminded me of the Pope someone who took his job very seriously, so small talk was out of the question he was much to serious. He continue his pressure point test, each touch felt like shearing stabs of lighting shocks sent into my body. I continually started to raise my voice louder and louder with pain until I finally pushed him away because it hurt. It hurt to damn much for him to touch me from my knees down. This was my Achilles heel. He knew by my look and the light push I was not kidding and I was in pain, extreme pain.

Just like that he said” Okay you can get dressed now, I will be back in a few moments and please stay seated” I slowly got up from the laying down position as he didn’t have the courtesy to offer to help me up. I was in pain, my lower back was on fire, my body ached like it did everyday but my lower legs those were my biggest issue, some days I prayed to have them cut off, it hurt like nothing I ever felt. Than just like that with no knock on the door in he came with his white lab coat and white hair and took a seat infront of me. He proceeded to explain his findings in medical terms which served me no purpose because he was leaving me in suspense, until I finally heard the words ” You have Fibromyalgia!!” I sat there with a blank stare and looked at him thinking did I just hear him right? I asked him ” Do I have Fibromyalgia?” like I was shocked.

He proceeded to say” There is sufficient evidence of soft tissue damage, which when we touch all 11 to 18 pressure points to be diagnosed you have them all, all 18 of them!” He proceeded to tell me to reduce my stress, exercise, do meditation and eat healthy, as thats all you can do to treat this disease for the most part. It’s a neurological disease of ones nerves being overloaded sensory wise to your brain. Some people do well with Fibromyalgia and others are in a wheelchair and/ or bedridden!” Regardless I finally felt for the first time I was validated, that I had a face to an invisible illness, and its name was Fibromyalgia.

Life Before Autoimmune Disease

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I was busy, boy was I ever, a multi -tasking Mom of 3 children ages 5,7 and 9. I worked for the biggest airline in Canada and loved my job because I was that people person who thrived off of a high intensity work load being a single mom wasn’t hard like I heard, it was easy,  I was running my home, my life and work life like a fine oiled machine. I felt like superwoman. I had it all under control.

I had an active gym life outside of my work, and social life as thats all I ever knew growing up with sports. WORKING OUT was my drug of choice it released my anxiety all while I was going through a nasty divorce with a narrasstic-sociopath cop.  I usually got 6 hours maxium of sleep per night and than commenced the next day the same way all over again, it was ground hog day everyday but it was structured, tiring and at sometimes very scary but rewarding because I refused to fail. I seemed to over come each obstacle with ease for the most part because I was in survival mode until one day I was struggling, and struggling bad my fatigue was overwhelming, my joints ached like I got hit by a mac truck, I brushed it off thinking it’s just the rentlentess days of juggling mom life, work and a crazy schedule as a single mom. However everyday I woke up stiff, my hands especially and feeling like I had the flu but I had no time to have the flu, not even a second, I had too much to do and had 3 kids that depended on me for everything. I couldn’t just call in sick I had no family!! and my soon to be Ex was either overworking or being with his new girlfriend to even care to show up for is allotted visits. So I was flying solo it was all on me, there was no plan B.

Finally I decided to see my Doctor who knew me so well she knew I rarely called or came in for myself so something must be serious. I grew up in the 80’s, I was one of those kids that went out in the morning and didn’t come home until supper time, if we got injured outside we sucked it up there was no running home to Mom because I was a latch key kid. My choices were I either lost time with my friends outside or run home for a quick clean up with a band aid and deal with scolding once my parents got home especially my abusive dad. Of course it was easy, my friends came first period because I had limited time before my responsibilities after school had to be done.

During my appointment I keep telling my doctor my body ached in places it never hurt before, I was forgetting small things, my memory I thought was overloaded, I mean of course it would be right? I was going through a nasty divorce with one revengeful abusive man, and that alone was extremely stressful beyond words.

My doctor did a quick examination, touched some pressure points, they hurt in some areas but not in others. The normal ears, nose and throat check, a few questions about what a typical day was like for me. With a few small short sentences I explained to her what was going on in my life and than I heard the words ” Your just over worked and under alot of stress, combined with the lack of sleep, your body is telling you that it needs rest!”

“STRESS that’s what’s wrong with me? Well I need to get better because I have no time to be sick Doctor ” Do you have anything I can take?”

I left my doctor’s office with a low dose sleeping pill and was told to have some relaxing time if possible with no kids, ya right! How was that EVER going to happen without me my kids had only their dad who wasn’t available on a good day. So I called my good friend Michelle and broke down with her on the phone spilling it all out that really I was not okay. I needed help so the next day without hesitatation her husband came out took my 3 children as it was a Saturday and he told me ” Enjoy your day, I got it covered Deb, they will be fine.” They loved Bobby he was funny, he was this big 6ft 2 Male with an infectious laugh and he was a Firefighter, everyone loved him. He brought such a light calming energy when he walked in a room. I could see they were excited and they couldn’t get in his vehicle fast enough because it was certain they would be going to the firestation to go on the fire truck they were going to have fun especially the 2 boys for sure.

I was glad it kept some sort of normalcy in their life during a uncertain time and it allowed me some time to get some much needed rest as per doctors orders. I don’t think they were out of the drive way and I crashed into my bed hidden under the covers and cried, not just because of my divorce situation but because I hurt so much and than the reality hit me, how much longer can I do this on my own? My body was fighting me and deep down I knew something wasnt right but what exactly? I did not know. All I knew was I needed sleep and more sleep because I was beyond exhausted before I was back on mom duty and just like that I remember my body crashing like never before.

Grace

Many people with Autoimmune Disease suffer in silence because of the fear they will be labelled as either a Hypochondriac, or even worst that dreaded misused word “crazy”. Why? Because Autoimmune Diseases are a categorized group of specific illnesses where the body attacks various parts of itself for unknown reasons and for the most part are invisible to the average person. Most doctors don’t fully understand them medically themselves, let alone society who somehow tends to need to see visible disabilities in order to give you the pass of being really sick! I had no idea that it would be such a struggle to have my family and friends to understand that I was just a sick as someone who was battling well know diseases like, Muscular Dystrophy or Parkinson’s to even COPD. I felt like I had to justify my so called insignificant diagnosis to others when really “it is about having the courage to show up when you don’t know the outcome.” The outcome of your future or day to day life.

When your first diagnosed usually after years of a continual battle of asking for second opinions from alternate specialist, this of course if and only if your family doctor doesn’t have any Ego and really does sympathize with you, and wants the best for you. All while you struggle to just make it through each day let alone get to the next appointment. Without having to cancel due to delibtating pain and/ or extreme exhaustion, memory loss or any one of the hundreds of symptoms that may rear it’s head on that given day.

“It is about having the courage to show up when you don’t know the outcome”

Brene Brown

It took 1 wrong diagnosis of having Multiple Scolerosis in the beginning of 2011 and 3 neurologist and a Rheumatologist to confirm that I really did have fibromyalgia and NOT MS. Did I like the fact that I took medicine for 2years for MS to no avail and no relief, NO! especially considering I had already told my friends and family I had MS. As much as I wanted to scream and put blame on the doctor who originally diagnosed me I could not. Autoimmune Diseases are like stealth fighter jets they attack silently and can be deadly, all while overlaping many other Autoimmune Diseases. So how could I be mad? I felt stupid, really stupid like I had lied but I didn’t! that didn’t help me though with the fact that I could see and feel my friends, and family thought I was a fraud.

I eventually ended up being diagnosed with 3 more Autoimmune Diseases over the course of these last 10yrs. Hashimoto’s Thyroiditis than Lupus and Crohns together, Lupus being the most severe and deadly. That’s when I finally realized that Autoimmune Disease has given me a credibility I’ve never had, now I own it as its mine to embrace. Everyday is a struggle, I mourn the loss of my old self, although I think I remember what it felt like to feel “Normal” back in the days of pre-Autoimmune, but its merely a distant recollection I vaguely remember to be honest. I do know one thing for certain! I do not allow any of these illnesses to define who I am. I now live a life I’ve known for a long time and have become accustom to, as much as I have endured much pain & suffering along with the loss of many friends, not to mention my former self. I look foward to each day as a new day to learn how to live my best life inspite of all the challenges I face daily, and really isn’t that’s what life is all about? Finding your good days among the chaos of a crazy not so fair world. This is where I finally found my grace, the grace to be authentically me.