Arthritis

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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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Suddenly I Am Old

I have become a festering mass of prejudice.

The beauty of the world I saw everywhere is now only captured in odd detail. 

Misery and regret fill my days, where once it was laughter and joy. 

Why should it be different for anyone, when it is the same for everyone? 

Wear and tear turn to weary tears in my twilight years. 

Hands that lifted heavy weights, can hardly lift a cup now without shaking; 

Those hands, brutally veined and gnarled with arthritis, no longer reach out to the future

but hide in memory of a once glorious capability.

This body, a reflection of its thoughts -

Bitter and twisted hands. Bitter and twisted mind. 

Care worn on the outside, destroyed on the inside;

All hope gone as Winter replaces the Spring and I am lost to despair.

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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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I apologize, but this season S*C*S!!!

I'm not talking about the upcoming holidays; although for me are depressing. I'm talking about that nasty sky dandruff! The temperature is only a high of 31 degrees F.
Honest I'm not sure which is in a flare! Fibromyalgia, Musculoskeletal Pain, Arthritis, hEDS or any combination. But I am absolutely miserable! Two days ago is when I pulled myself out of a multi-day deep depression. I had the energy so I tackled my living quarters which I had neglected 4/5 days. Also Scrolling YouTube and enjoying life. Before I knew it, it was like 3 am. Whoops!! Needless to say I didn't get much sleep that night. Last night between coughing (swollen tonsil), having to use the bathroom and sporadic pain of different types and in multiple places, I don't think I got more than 2 hours of sleep. So I am downright tired! I had to walk the 3 minutes to the grocery store (using my rollator walker) to get fruit, a few other items and much needed BC Powder. 3/4 of the way into shopping my back went into full spasm. It was all I could do to finish. I just needed to get my BC Powder and then pay. When I got to where my medicine was I was thinking; CRAP. Cause it was on the bottom shelf. A woman just happened to walk past and I asked her if she would get it for me and explained I can't bend over. She was polite and did so. This store has 6 self checkouts and typically only 1 (2 on busy days) regular registers where an employee rings you up and bags your groceries. I can't use that one because my body won't allow me to wait in the long lines where people have full carts. So I'm bending as little as possible to pick up an item off my walker seat, scan it and then bag it. By the time I'm done with that process I had 3 bags and could barely move. I hung one on each handle and the heaviest in the pocket under the seat. I fixed a quick lunch by tossing (I can't think of what their called) 6 of them into the air fryer. Put away my items and went to take them out. Ate those and some melon,and am laying down and my arms are wanting to resist holding my phone!
However; I know I am blessed. I know I've had worse pain days than this. AND ... I know this pain will eventually subside, I just gotta ride the wave of ... (no words to truly describe how I feel, Natural childbirth hurt less)! Thanx for listening. Oh, my BC Powder stopped my headache, but even the combination of my morning meditation of 6 are Tylenol Arthritis (I take 2) and Ibuprofen 800, the BC and I had taken my Gabapentin 300 MG; nothing stops this pain until it rides its course! Stay strong ya all! After all, that's what we do!! 😉

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Sharing more helpful information #Arthritis

Momma got my a copper infused wrist brace hoping it will help with my Carpal Tunnel. In with the brace a mini booklet came in the packaging as well. It is from Dr. Arthritis. (doctorarthritis.org)

In the booklet it gives helpful information about the wrist and ailments specially in the wrist. At the end he shares his; Top 10 Tios for Arthritis.

1. Take your medication regularly, not just when you're in a flare-up.

2.Treat any underlying Depression. Arthritis can get you really down. Therefore should not be treated as a physical problem.

3. Consider alternative treatments: Acupuncture, Aromatherapy and Yoga.

4. Use hot and cold therapies. These target inflammation and combat pain.

5. Stretch. This helps to lubricate the joints and enhance range of motion.

6. Gentle exercise in the evening. Before bed, just walk through your house or adjusting yourself on the couch a couple times can works wonders in terms if reducing morning stiffness.

7. Eat a healthy diet

8. Maintain a healthy weight. Extra weight puts more strain on your joints.

9. Manage smoking. Smoking puts stress on connective tissue. So try and cut back or quit.

10. Know your limits! Don't over do it. Rest when your body tells you to.

Not sure if this will be helpful to anyone, but thought I'd share just in case!! Stay strong!!

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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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