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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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Dear heaven my mighty friends, I had an especially horrid night last night

I woke up at 11:30 or so to an urgent voice whispering that said: "good dog, good dog."

As I sat up, my eyes were drawn to one of my windows. It was someone in a Darth Vader mask who had peeked their head around my window cooler to look in my room.

Normally I sleepwalk and hallucinate, I never am fully awake but during this I absolutely was aware and terrified. I pretended to casually grab my phone. I called my mom and dad who take care of me but got only voicemail. I was shaking and so I called 911 so whoever it was would know I was asking for the police. The mask through my window disappeared and I ran to wake up my parents.

Years ago in our first house someone broke into our front window where my Lil bros room was. They cut the screen. But unexpectedly I had set the alarm that night so it went off. My parent thought I had wrongly set off the alarm and then fell asleep hard. It wasn't until my brother got home from school that he noticed the cut screen (we lived down the street from a drug house where we had people on drugs stealing and breaking in and scaring all our neighbors all the time. They even had an attempted murder where a girlfriend was chained up and stabbed multiple times.)

Yeah, dark stuff. We found out the alarm had been set off when the wannabe thief tried to open my brothers window. That scared the bad guy away. My parents thought it was me so they told the security it was nothing but after us all talking we filed a report and thanks to our cameras the police got him.

So flash forward to last night where it was my bedroom window at the front of the house hidden by a bush even. We have had people break into vehicles and take things so it makes sense to me that not only was I not sleepwalking but it was very real. But my parents don't believe me. Again. The people who mean the most to me never believe me and I have to fight hard against any tiny doubts in their minds. I am so sick of it and I was and still am terrified of what happened. But I seem to be the only one who cared.

Family can be great but they can also cut the deepest. 😥

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

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