A.S. Face 1421: Amber

Face 1421

 

PERSEVERENCE I FOUND ALONG THE WAY:
I was 14 years old,  when it started:
Pain like I had never felt before.  3 years later, it came with a name. I was branded with Ankylosing Spondylitis and Fibromylgia.
Along with facing the “normal” tribulations of a teenage girl, I had a form of arthritis that many, myself included, had never heard of.
I faced scrutiny; dismissal of my incapability because I did not have Rheumatoid Arthritis; angry faces while using the Walmart wheelchair and the disabled parking due to my age.
Yes, I admit I wallowed in my sorrows, questioned ‘WHY ME’ ?
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At 22 years old,  came a pivotal moment of change; of acceptance:
While in the hospital, I had been sent to the palliative ward to do my laundry.  There,  I was yelled at for saying hello to a dying man.  Since then,  his smile has remained in my mind, always reminding me that there are people who have it harder than I; that everyone has a story.  Here is a continuation of mine:
It was the same year that my rhumatologist told me I was the worst case he had ever seen.   I had been bedridden for six months on various Nsaids. He then put me on Enbrel and, with this, I found hope.
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I am now 31 years old:
Three weeks ago,  I had my work call 911 due to an allergic neurological episode from what I thought was Enbrel. I called my rheumatologist and he told me to stop using it and made an appointment for me.  The first week I stopped using my Enbrel, I was terrified.   Yet,  strange as it was, my Ankylosing Spondylitis got better.
My rheumatologist told me that I may have Enbrel induced Multiple Sclerosis and was happy that I had a Cat scan scheduled.  With that he said,  “In my books you look 100% fine and well to work “.   I walked away feeling betrayed by a Doctor I had put my trust into for 10 years;  feeling angry being told that I was told I “looked” 100% fine and able to work from a doctor that I thought understood what I had been through; confused that I was then thrown out the door with news that I may have Multiple Sclerosis.
I looked to my left and there stood my partner who recently was diagnosed with Ankylosing Spondylitis; who understood what having Ankylosing Spondylitis was like.   I felt safe then, breathed reached for the hand offered, and gained my bearings again.   I walked out of the building committed to stay strong; to show vulnerability yet determination.
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A week later:
Two days ago, my central nervous system was shutting down and I was admitted into emergency for the night and told that I will being having an MRI Monday.    The ER Doctor told me he has suspicions that it could possibly be Multiple Sclerosis, symptoms of a previous Stroke or that it may be an interaction of my medications causing my symptoms.
The doctor advised me to go off my medications,  except for the ones I absolutely need – tylenol extra strength, effexor, half my seroquel for sleep, pentasa, my puffers and tecta. I thought that I had doom approaching quickly.
My pharmacy at home, in one month, has had ENBREL, FLEXERIL, BENTYLOL, PHENARGAN, HALF MY SEROQUEL taken away!!!
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It is the Saturday prior to the Monday of my MRI as I am writing this:
I still don’t know what is wrong with me neurologically,  but I’m shocked that both my arthritis and my anxiety symptoms have decreased since I’ve been off my medications.
I am still asking myself what had happened in 10 yrs to take me from needing all of these medications ,  to not needing them, and I still don’t have answers. I will attest to doing severe therapy; getting rid of toxic thinking and people; quitting alcohol; changing to e-cigarettes and improving the quality of food that I’ve ate, but I have NO IDEA why I don’t need my meds?????
Both my Partners and I still have our jaws hanging because not only has my daily dose of meds been cut in half, but my symptoms of anxiety and AS have gone into remission. The medications that I could not live without 10 years ago are now gone.
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Yes, I admit I am worried about my results on Monday  , however I am still grateful for what I’ve been given – A new lesson in life, perhaps a new struggle, but looking at what I’ve gone through in my past I know I have the strength to face my future.
No matter what, I am at peace right now, today, and sometimes that is all we can live for. Let each day be like our last, I think to myself, writing this with saucer eyes – – still shocked!
I am overwhelmed by the events this last month, but talk about changes that I never,  ever thought possible!  If we need the medications, we need the medications… Pros against cons right?
While much goes unknown,  it is this that I am certain- It’s not always about the pills.  It’s about living life to the fullest we can and being surprised by our own strengths along the way!!
New Brunswick, Canada

One Response to “A.S. Face 1421: Amber”

  1. Dear Amber,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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