Scoliosis

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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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Incredible guiltTraumatizing my kids (19&21yo) I got toxic megacolon 3 wks ago, the drs saved my life w colectomy w ileostomy. I’m a single mom

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

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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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