#chronicillness autoimmune fibro spoonielife

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feleciaandthedinosaur:World AS Day has passed but here is a glimpse of what life with AS looks lik

feleciaandthedinosaur:

World AS Day has passed but here is a glimpse of what life with AS looks like. Thanks Felecia!
www.stopas.org

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#facesofas #aspatient #assurvivor #aswarriors #spondylitis #ankylosing spondylitis #ankylosing #arthritis #spoonie autoimmune chronicpain arthritis spondylitis #chronicillness autoimmune fibro spoonielife

@SAA Connections

Wed, 14 May 2014 14:50:04

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.

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#ankylosing #ankylosing spondylitis #spoonie #spoonielife #spoonie autoimmune chronicpain arthritis spondylitis #chronicillness autoimmune fibro spoonielife #aspatient #assurvivor #aswarriors #backpain #psoriasis #spinalcord #spinal fusion #mother #motivation #facesofas

@SAA Connections

Wed, 14 May 2014 14:03:15

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

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#inspiration #quotes #aspatient #assurvivor #aswarriors #chronicillness #spoonielife #spoonies #arthritis #fibromyalgia #cystic fibrosis #juvenile arthritis #chronicillness autoimmune fibro spoonielife #spoonie autoimmune chronicpain arthritis spondylitis #spinalcord #backpain #inflammation

@SAA Connections

Wed, 30 Apr 2014 19:48:00

Sometimes we hear stories about the really crazy things docs say to people. We thought we would share some of these, and ask you for yours. Because sometimes all you can do is shake your head and laugh…. And then find a new doctor! ~~

“You can’t have AS because in all my years practicing, I’ve never diagnosed anyone with AS.”
“My Mom is having a bad time right now. I asked her Dr. If it could be AS. He said she doesn’t have the bamboo back so she doesn’t have AS.” - (posted on our page just today)
OBGYN: “Obviously I can’t have anyone in my practice with spondylitis….”
Rheum to just diagnosed patient: “You have AS. There is nothing you can do except take medication and accept that it will probably get worse.”
“Doctor: You have pink-eye. Me: It doesn’t feel like pink-eye, it feels like someone is stabbing my eye with a hat pin. Doctor: it’s pink eye - I know what I’m talking about, I’m a doctor. (Hint: it wasn’t pink eye - anyone with AS knows what it was)”
#Truestory

#ankylosing #ankylosing spondylitis #doctors #true story #arthritis #rheumatoid arthritis #reactive arthritis #autoimmune #spoonie autoimmune chronicpain arthritis spondylitis #spoonies #chronicillness autoimmune fibro spoonielife #chronicillness #invisibledisease #aspatient

@spondylitis-blog

Wed, 30 Apr 2014 14:35:25

Which one do YOU choose?

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#aspatient #assurvivor #spoonie autoimmune chronicpain arthritis spondylitis #spondylitis #ankylosing spondylitis #ankylosing #invisibledisease #inflammation #chronicillness #chronicillness autoimmune fibro spoonielife #spoonielife #spoonies

@SAA Connections

Wed, 23 Apr 2014 16:33:32

Not defined by our spines…..

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#arthritis #reactive arthritis #spoonie autoimmune chronicpain arthritis spondylitis #chronicillness autoimmune fibro spoonielife #spinalcord #inflammation #infusion #backpain #chronicillness #chronicdisease #invisibledisease #chronicpain

@SAA Connections

Wed, 16 Apr 2014 14:29:27

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

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#spoonie autoimmune chronicpain arthritis spondylitis #spondylitis #ankylosing #ankylosing spondylitis #chronicillness autoimmune fibro spoonielife #spoonielife #spoonies #invisibledisease #arthritis #mother #babyboy #rheumatoid #rheumatoidarthritis

@SAA Connections

Wed, 16 Apr 2014 14:25:00

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!

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