#spoonielife

MEET AS FACE , Erin Thatcher

Here’s her story:

I am 30 and have had AS for the past 10 years. It took me 8 to get a proper diagnosis. As a child I had been inflexible, but from my late teenage years I began having issues like chronic tendinitis, bouts of inflammation and pain, and several fractures.

No provider could help me. I saw countless doctors and physical therapists but everyone was stumped. I was diagnosed with celiac disease, several vitamin deficiencies (D, B12, iron, etc) that I still struggle with today. We hoped that resolving those problems would fix my inflammation and joint issues but it did not.

Eventually in research I found out about enthesitis, the inflammation of tendons and ligaments where they attach to bones. This was a major issue of mine and I asked my rheumatologist. She agreed to test me for HLA-B27 which she said would come back negative because it is an indicator for a “Man’s Arthritis”. It was positive and I switched providers following the results – my new Rheumatologist did more testing and I was diagnosed with AS promptly.

Today I have twin toddlers who were born micro-preemies. They make my life so worth it – though it is a challenge to physically care for them at times. I work full time and also run a non-profit  organization. Enbrel, Mobic, and Lorzone along with a consistent sleep & work schedule help me manage my AS.

Just a friendly reminder to be gentle with yourself. We can be our own toughest critics sometimes, but we’re all doing the best we can. Also, the week is more than halfway through - so there’s that!

Stay Strong #RP! Thanks @naturally_lupie #spoonies #spoonielife #arthritis #ankylosing #spondylitis #chronicillness #invisibledisease #spinalcord #inflammation #infusion #backpain

Sometimes letting go shows more strength than to keep holding on….Think about it

Which one do YOU choose?

I’ve only been recently diagnosed with AS, but I’ve been looking for a diagnosis for over a decade.  It all started in my early 20s with generalized pain and excruciating sharp pains coupled with swelling in my joints.  At the time my blood work and clinical findings indicated lupus but there wasn’t really enough there to diagnose me.  The rheumatologist also thought I might be heading toward a rheumatoid arthritis diagnosis, but there wasn’t any visible damage to my joints on the images yet, and my RF was negative.  So, back in the early 2000s I was in diagnosis limbo and placed on a series of mediations that were under a lot of scrutiny at the time: Vioxx, Bextra, Celebrex.  I was very sick on these medicines and I felt like I was drowning in a sea of pills from everything that was being prescribed.  In the end, sometime in 2005, I just decided to “cut my losses” and drop out of treatment with mainstream medicine.  I did see a naturopath and eventually an Integrative Medicine doctor, but my experiences were not as positive as the many people who have had success with those methodologies.  Unfortunately, after about 6 years of just “hanging on” I had a severe downturn in my health.  It all happened during the happiest time in my life too, which is sad.

In 2011 I gave birth to our charismatic little son. The pregnancy was miserable, with every complication I could imagine, followed by an emergency induction at 35 weeks after being on hospital bedrest.  It seemed that my body never recovered, and over the next two years as I got worse my doctors seemed all too willing to let me blame any ache or pain on post-pregnancy healing… or to suggest I had post-partum depression.  During that two year period we also moved, and the move was excruciating.  I ended up needing my mom to come from out of state to help because my whole body locked up on me.  It was at that point, where I went beyond pain and into immobility, that I promised my husband I would find a rheumatologist and get to the bottom of things.  The worst part of all this has been the way it impacts my husband and son.  The constant feeling that I don’t measure up as a wife or mother stinks, but the days where my husband has to do double the work, or my son wants to play outside but mommy can’t handle going for a walk are worse.  When he sees the other kids get picked up for a better view at the zoo – well, sometimes mommy can do it (I guess he’s sorta-lucky that mommy is in the beginning of the AS journey because some AS moms couldn’t EVER do it)………I have AS.  I am one of the faces of AS.~Angel

PSA to all AS Warriors to remember what their fellow AS warrior Jamie Coman said—>

“I have had ankylosing spondylitis for 15 years, along with a few other diseases. People often say I don’t look sick, or you’re too young to have that many things wrong with you.  My name is Jamie Coman, and I’m a rock star!”

AND YOU ALL ARE!

A Little encouragement for the Spoonies…….#LivingWithAChronicIllness

Living with a Chronic illness…..Be kind because you never know

A new Spondylitis Awareness music video out of Canada! Thank you for creating this! Beautiful! ‪#‎StandTall #PleaseShare

Love this!

MEET AS FACE Bijillian Dean MacKinnon and her beautiful son!

Here is her story:

My story needs some back-story. Approximately six years ago, I was physically attacked leaving me bruised, my arm dislocated, my nose broken, my neck black and blue and chunks of my hair pulled out. I was tortured and beaten for hours and almost strangled to death. When I had finally given up, I saw my late grandmother standing in the doorway and I got the strength to fight back and run into a room where I barricaded myself in and called 911. I survived that trauma physically, but mentally I was worse for wear. That incident led to a PTSD roller-coaster that turned my life upside down. Not to mention the stress of testifying in court (he was found guilty), changing my identity, changing jobs, apartments, etc.. Being a very positive person, however, I tried to turn it into a positive. I started writing a blog documenting my fight against PTSD. My dad was sick at the time so I joined Team in Training to run marathons and to raise funds against blood diseases. Eventually I was bungee-jumping for fun and completing triathlons in Hawaii. I felt like I was finally healthy. On top of that, I finally figured out what I wanted to do with my life and that was work with children. So I became a nanny and traveled to Sweden with a family. That led to a job at an elementary school where I also met the man of my dreams. We got together and we were quickly married with a baby. Life was, for the first time, perfect! Eleven weeks after I gave birth to our son, I ran a half marathon with my mom in Niagra Falls. A few weeks after that, my husband and I took our baby on a vacation to Prince Edward Island. Within a few weeks I dropped from my pre-baby weight down an additional twenty pounds. I started losing my hair in clumps. I couldn’t stand up right. I couldn’t run far. I had excruciating pain in my chest and in my spine and jaw. I was dizzy, fatigued and depressed. I was very short-tempered too. I couldn’t understand what was happening to me. Why I went from running a half marathon to being unable to lift my son out of his crib. We cut our vacation short so that I could see my doctor. I was sent to many specialists but it did not take long for my diagnosis to be made. A.S. To be honest, I didn’t know it existed until I was diagnosed with it six very long months ago. My first thought upon hearing the diagnosis was, ‘Arthritis? Am I not too young to have arthritis?’ My first emotional reaction was, ‘Thank God it’s not cancer.’ And that is everybody’s reaction to A.S. and a quick snapshot of how entirely lacking we are in terms of societal awareness of this disease. A.S. and all spondyloarthropathies are chronic and incurable. Often the medication used to quote on quote ‘treat’ this disease leave a patient worse off than before. I am not a doom and gloom kind of person either. I am actually the opposite. I have the kind of mental survival instinct that makes me capable of turning any horrible incident into a meant-to-be reasoning. It is basically my super power. Look at A.S.. Sure I went from doing triathlons, raising funds to fight cancer, running marathons, bungee-jumping and sky-diving to unable to work even part-time, unable to open my baby’s bottle, unable to lift my baby out of the crib, etc.. I am in constant pain and agony. My weight is a battle to keep meat on my bones. My hair falls out. I am anemic, hypoglycemic, thrombocytopenic, neutropenic and I can barely run 5 kilometres now. But I can turn this into a gift. Perhaps I would have been working too much and running too much to enjoy my baby’s first year of life? A.S. forced me to stay home and enjoy every second with my son and our dog. I may go a little stir-crazy sometimes, but if it were not for this disease, I would have missed a lot. Your whole life changes and so does your identity. Even the little things change. I fight everyday to keep any sense of pride when I can’t turn a doorknob or open a can of beans. I try to cover my black circles and dress up my muscle-less body to make it look buffer. I try to pretend that I am ok with the fact that after a lifetime of looking for what I wanted to do in life, I finally found it. I wanted to work with children. And for 2 and a half years I enjoyed every second. It’s not a job when you love what you’re doing right? A.S. took that away from me. My other passion in life was working as a coach and volunteering as one to raise funds to fight cancer. I was starting up my own fitness business. I’m trying to fight back, but so far A.S. has stolen that too. My goal now is to take the mental determination I possess and fight this disease by spreading awareness and educating those around me on what it is like so that maybe one day it will be a curable disease. And to make my son my passion and my reason to keep fighting. 

RIP Maya Angelou

Small piece of advice….#AsWarrior #StandTall

Words That Every Spoonie wants to hear from family and friends

Helping to spread the word along with my Sissy @ghdcanada and other members of my #chronicillnessfamily

#painawarenessmonth #chronicpain #chronicillnesses #chronicillnessawareness #chronicpain #chronicillnesswarrior #spoonies #spoonielife #spooniewarriors #spooniestrong
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What doesn’t kill you, makes you stronger.

#goodmorning #morningmotivation #quoteoftheday #smallbusiness #adversity #chronicillness #warrior #spoonielife #entrepreneur #strengthquotes #obsticlesinlife #hardships #overcomeobstacles #thursdayvibes #positivemindset
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When your circumstances are out of your control, you still have choices and never let anyone determine your worth! ❤️

#goodmorning #morningmotivation #thursdaymorningvibes #minsetmatters #loveyourself #circumstancesdontdefineyou #chronicillness #smallbusiness #motivationinthemorning #positivity #entrepreneur #spoonielife #spoonies #lymphedema #fibromyalgia #chronicpainsyndrome #choices #youareenough (at Lebanon, Pennsylvania)
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When you have a chronic illness, you can’t always be as productive as some of the people around you.

You have to follow your own productivity scale and balance your daily tasks with your health to avoid flare -ups and burnout.

It’s vital to remind yourself that you don’t need to compare yourself with others. And slow in the right direction, is still progress.

#smallbusiness #motivationalquotes #chronicillness #spoonie #spoonielife #obsticles #hardships #chronicillnessbusinessowner #supportlocalbusiness #limitations #disability #disabilityawareness #minsetmattersmost

(at Lebanon, Pennsylvania)
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