Ankylosing Spondylitis

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Hello Christmas!!

So many new things happening as of late.

Humera helped not a bit. The first month and a half felt great and it reminded me the good of being human. Five months later and my rheumatologist put me on a new medicine called Enbrel(amongst my 55 other meds I take for my many conditions).

I took my first dose on Sunday but I feel as bad as if I wasn't taking any meds whatsoever.

Years ago my EDS meant I had to learn to walk more carefully so I didn't dislocate my joints hundreds of times a day and using my tendons wrong, bruising them left and right. Now I have to relearn and the pain is simply horrific.

And my whole digestive system is a mess of course. Swallowing ten times just to get one bite down really takes any good out of food. Constant nausea and vomiting doesn't improve anything whatsoever.

And a hundred more symptoms of misery makes my huge mountain of existing even heavier.

Yeah I am blessed in many things but health or ease of existing are most definitely not on any of the lists.
Only a very cursed body that does work hard to try to do its best in aiding me, poor thing. Thankful for the small bit of good it tries to do while also wishing I could trade bodies with a healthy person for at least one day.

If only!😕🫤😔

Alas, I wait still for my new meds to start working with fingers crossed and tears streaming down.
Thank heaven that I at least have a few doctors that are trying!
Such a long 29 years of devastating suspense!!!

May the holidays bring the light and hope you deserve this season. And if not, may these Christmas lights on my family's tree lift your soul for even a small bit of time ✨️✨️✨️

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #CheerMeOn #Upallnight #IfYouFeelHopeless #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Eczema #Fibromyalgia #GastroesophagealRefluxDisease #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #Headache #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PsoriaticArthritis #Psychosis #plantarfasciitis #PanicAttack #PanicAttacks #PTSD #MentalHealth #MightyTogether #MightyPets #Migraine #MemoryLoss #musclespasms #MultipleAutoimmuneSyndrome #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #sciatica #ShinSplints #Sleepwalking #MajorDepressiveDisorder #nightterrors

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Miss Rosie with her boyfriend named Bruno. He is a Great Dane!!

They LOVE to play so our day revolves a Lot on hearing his bark from our bedroom and then Rosie races off the bed and spins and spins and spins in happiness while barking with her playful yips.

It is so much fun (Nixing the part where my joints all painfully pop out as I try to hurry and let her out) then she races up to the fence to bark and spin a lot more.

She was scared of his big self at first but me going up to him and giving him scrapes helped build up her courage ❤️

Can you tell she is my LIFE? 😁❤️✨️💖

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #PTSD #Psoriasis #PsoriaticArthritis #Psychosis #PanicAttack #PanicAttacks #plantarfasciitis #MentalHealth #MightyPets #musclespasms #MultipleAutoimmuneSyndrome #Upallnight #CheerMeOn #SuicidalThoughts #Sleepwalking #sciatica #Scoliosis #ShinSplints #BoneSplints

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Lil Miss Rosie had a dental cleaning vet appointment. Her owners who bred her in a tiny cage didn't help teeth cleaning for her first 4yrs.

7 teeth had to be removed and her two removed back molars were barely hanging on. For the past year I am so glad I begged my parents for this dental appointment. Already we can tell she chews normally without bouncing food around her mouth in obvious pain.

Of course animals require anesthesia so the pets don't face stress and the vets can work more easily. 6hours was so long as I worried for her.

Expensive but SO worth it! Her breath smells so so much better! Warm fuzzies all around! Though I do miss her tiny tooth that use to stick out like a super cute gremlin! Lol

Bless this dear pup friend 'o mine!!! ❤️ ❤️

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #AnkylosingSpondylitis #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Eczema #Fibromyalgia #GastroesophagealRefluxDisease #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #plantarfasciitis #PanicAttack #PanicAttacks #Psoriasis #PsoriaticArthritis #Psychosis #PTSD #RareDisease #RheumatoidArthritis #Upallnight #SuicidalThoughts #Scoliosis #sciatica #MentalHealth #musclespasms #MultipleAutoimmuneSyndrome #MightyPets #MightyTogether #Migraine

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My Journey with Ankylosing Spondylitis (10-year journey)

Raza’s Story: It all began subtly during my college years—symptoms that seemed trivial at the time but would soon change my life forever. Fatigue weighed heavily on me, along with a persistent low back pain that I tried to ignore. I also noticed an odd swelling near my sternum, where my first rib meets the bone. I consulted several doctors, but they found nothing conclusive. Despite running tests, no diagnosis was made. With no answers, I convinced myself it was nothing serious. Over time, even the fatigue seemed to fade.

But the lower back pain never went away.

As time passed, the stiffness became worse. I started waking up in the night, unable to move, convinced that my old mattress was to blame. I replaced it, hoping for relief, but nothing changed. My mornings were filled with stiffness and pain. As a university student staying in a hostel, my daily life turned into a constant battle—juggling the demands of my studies with the growing discomfort that plagued my body.

The breaking point came on the last day of my final exams. My back and hips were in so much pain that I couldn’t sit through the exam. I had no choice but to leave early, feeling defeated. Back home, I visited the Haripur DHQ hospital, many private doctors, and even the CMH in Abbottabad, yet nothing improved. I even tried physiotherapy, but the relief was fleeting at best.

I lost count of how many times I had blood tests done, only to hear the same frustrating response: nothing is wrong. But I knew something was deeply wrong. The pain intensified, spreading throughout my body. My right arm became stuck in place, unable to move, making even the simplest tasks impossible. I developed a fever, and the pain seemed to worsen every day.

Soon, the pain reached my jaw, making it so stiff I could barely open my mouth to eat. Headaches were constant, and I felt trapped inside a body that seemed to be shutting down. Then my knees began to swell—so badly that walking became a challenge. Desperate for answers, I consulted another doctor who found fluid in my knees and performed surgery to drain it. But the pain lingered, still a mystery to all the doctors I saw.

At this stage, I was bedridden. I couldn’t move without using a stick and could barely take a few steps without extreme effort. The pain and disability had taken over my life.

That was when my younger brother’s friend discussed my condition with his cousin, a doctor. He invited me to his home to review my reports and examine my joints. After assessing me, he suggested I visit the KRL hospital in Islamabad, where he worked. There, a team of doctors took a closer look at my case. They ordered new tests, including X-rays of my hip bones, an ESR test, and the crucial HLA-B27 blood test.

The results finally provided some clarity. The HLA-B27 test came back positive, and my ESR levels were alarmingly high. I was referred to a rheumatologist, who carefully examined my condition and confirmed the diagnosis of ankylosing spondylitis—a painful, chronic disease that affects the joints, especially in the spine and hips. They explained that while the disease wouldn’t kill me, it was permanent and there was no cure. I would have to manage the pain and symptoms for the rest of my life. Even they didn’t know what triggered it.

I started treatment immediately, taking anti-inflammatory drugs, painkillers and steroids to relieve the pain. Slowly, I began to regain my mobility. After weeks of treatment, I was finally able to walk without a stick. However, the pain persisted, never fully leaving me.

Eventually, I found a job and started working again, which became an essential part of my journey. Having work to focus on helped distract me from the ongoing pain. But even after nearly ten years, the pain hasn’t gone away. It has left a permanent mark on my posture and has changed the way I walk.

Despite treatment, I am still living with this disease. The pain continues to affect my body daily. Even though I can walk without assistance now, the pain is a constant companion, reminding me that ankylosing spondylitis is something I will always have to endure.

Despite everything, I continue to push forward, living each day with determination and hope.

#AnkylosingSpondylitis #Depression #ankylosingspondylitisawareness #LifeWithAS #SpondylitisAwareness #ChronicPain #PainManagement #DisabilityVisibility

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