Ankylosing Spondylitis

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Ankylosing Spondylitis
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Hi, my name is BendyGrandma. I'm here because I am pending diagnosis of hEDS. I was recently diagnosed with Ankylosing Spondylitis due to being HLA-B27 positive, but I don't have the horrible back pain they speak of. I am extremely hypermobile and have dislocated my knee 7 times as well as my jaw and occasionally sublex both shoulders. #hlab27 #HEDS #MightyTogether #Anxiety

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We all have these times in our lives. Many are no doubt in this same place right now too.

I was there for almost 2 decades. Not including the 13 years I suffered in pain, alone before. I found peace in my religion as I purposely put one foot in front of the other, often not literally as my body quit on me in ways no doctor understood.

Finally a two months ago I got a rheumatologist who understood and was intelligent and not just guessing. And he wasn't going to give up like the rest of them. And then I finally got a pain doctor who wasn't terrified of medicine and at long last I got the REAL dose I needed. It has been such a long time coming!

So trust that life has things in store that others say will never happen. Trust! Have faith! Dare to dream and hope!
Become the exception, someone who doesn't settle and fight on for that happiness!

When I first found this forum I posted about how I was in so much pain I wanted to die. And in a response from a friend, one who I looked up to and still do, he said: what if tomorrow they come up with a treatment or cure for your condition?? Wouldn't you wish you held on until then?

Life is better when we hope. We live better when we hope!
Don't settle dear Mighty friends. Things will improve, you just have to give time, time.

In the scriptures there is a story of a man who suffers unable to walk for 38years. And then Christ heals him.
I can't help but think how very hard it would be so long ago to exist like that. Nowadays we have running water, toilets, walk-in showers and baths with hot water. We have refrigerators and food that we can buy pre-sliced. We have cars and various Taxi options. We have online shopping and dollar stores! And snack foods that stay good for a long while.

Even in bad health and struggles, we are very blessed. Think of your ancestors who no doubt had problems that you have but no name to put to it, perhaps like yourself. The world is more understanding even if they don't truly understand it all.

You, dear Mighty friend, have good things that pass your way. Open your eyes to them! Allow them to carry you on your way as time passes and even better things at last find you as you so very much deserve ✨️
Hold on! ❤️ each day brings you ever closer ❤️

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #BoneSplints #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Headache #PosturalOrthostaticTachycardiaSyndrome #Insomnia #Lupus #Lymphedema #MightyTogether #MentalHealth #MemoryLoss #Migraine #CheerMeOn #PTSD #Psoriasis #PanicAttacks #PanicAttack #Psoriasis #PsoriaticArthritis #plantarfasciitis #RareDisease #RheumatoidArthritis #AnkylosingSpondylitis #SuicidalThoughts #Scoliosis #ShinSplints #Upallnight #musclespasms

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This is a VERY important one!

Having such bad health and always having had bad health, I occasionally wonder who would want someone who can't do anything and costs a LOT for Dr appointments and medicine.
But then I think back to when I was in a wheelchair and new people still wanted to hang out with me.

It was who I am not how poorly my body can be and is.

Family get mad that we don't spend enough time together. A gift though not being able to control my health makes it still something to fight for.

People are drawn to personalities and temperaments. Before I was a leader of the many groups in school, in 3rd grade I made it up as I went. Reaching out to anyone and everyone who seemed lost or alone. It was and is who I am. Often who we appear to be, we are at heart. Like personalities and relatability call yo one another.

Soon my group was humongous and filled five or six long tables! Everyone would have a friend. I wouldn't allow otherwise. Thankfully it caught on.

My family still see me as the popular kid but I still think and know that I am just someone who never wants another person to feel left out, forgotten, or ignored.

Each of us deserves happiness and friendship.
And here we all are on The Mighty! Whoop whoop! Such a blessing always and forever!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #Disability #DistractMe #ComplexRegionalPainSyndrome #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Insomnia #Migraine #Lupus #Lymphedema #MentalHealth #MightyTogether #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PsoriaticArthritis #PTSD #plantarfasciitis #PanicAttack #PanicAttacks #Psychosis #RareDisease #RheumatoidArthritis #AnkylosingSpondylitis #SuicidalThoughts #Scoliosis

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