Diffuse Idiopathic Skeletal Hyperostosis

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

Hello, I’m new here and I’m dealing with some really rough relationship issues that I feel have a lot to do with my health. Where do people discuss these challenges on The Mighty? I will admit that tim struggling with the relationship and it’s a 10 year relationship and we love each other very deeply yeah I feel like my medical condition. Makes it too scary or risky for someone to take a chance to be with me based on the numerous systems have been affected by my systemic connected tissue and auto immune disorder. The person I was dating for 10 years that we’re about to be engaged is a physician had a kidney transplant and I think understood too well how much risk I’ve had recently with several near death medical crisis according to my present medical history, my trajectory is not going upward at all. In fact, my immune system has attack more organs systems and now I’m not a surgical candidate, major spinal deformity or hammertoe/bone spur injury.
Im still here. My bf broke up w me. We were supposed to get engaged shortly. Hard week. I think it’s too late I missed my chance. I was in a to me and my kids which took me 15 yr marriage that was destructive to me and my kids. It took me ten years to get a divorce. I’m still dealing with the fallout from that. Dating# #mixedconectivetissuedisease #PrimaryImmunodeficiency #DemyelinatingNeuropathies #MultipleSclerosis #CrohnsDisease #AutoimmuneDisorder
#Epilepsy #Arthritis #DegenerativeDiscDisease #ChronicFatigueSyndrome #Arthritis #DiffuseIdiopathicSkeletalHyperostosis #seronegativearthritis #Scleroderma #Endometriosis #Gastroparesis #ChronicVestibularMigraine #Migraine

Hi, my name is anne I've been diagnosed with degenerative spine disc disease w 8 spinal reconstruction surgeries w hardware, diffuse idiopathic skeletal hyperostosis with excessive bone spur growth… I'm looking for treatment of bone spurs impinging spine, unspecified connective tissue dx, demyelineating syndrome, Crohns disease,

#MightyTogether

#DISH
#spinal stenosis
#Crohns   disease
#gastropareses
#Depression

#DISH
#spinal stenosis
#Crohns   disease
#gastropareses
#Depression

#DiffuseIdiopathicSkeletalHyperostosis
I was recently diagnosed with DISH. Having alot of low back pain which they are attributing to my bad hip, trying to get into see ortho which is impossible right now. What I am really worried about is the numbness in my feet/legs and my fingertips. Is this a normal thing with this? Any info on this disease is much appreciated. Thank you

I was sharing with the father of an autistic child that he must not think of autism as an entirely negative thing. I hope parents who are facing an autistic diagnosis of one or more of their children will read this. Autism has some significant advantages. We are better at ALONE than any other people in the world. God forbid, if I’m ever in prison and I get stuck insolitary confinement, it will probably be a relief to me. Especially if I can take some books. except for the sounds of the non-autistic persons going nuts from solitary. Their noise will annow the heck out of me. Anyone’s noise except the quiet conversation of a good friend annoyes the heck out of me. There are worse things than being annoyed.

My tolerance or even embracing of repetition has made mea much better musician. It doesn’t bother mein the least to play the same song over and over (And over and over) until I have mastered the fingering of the composition down and have memorized it.

The same principle applies to cooking. I am an excellent cook because I don’t mind making a dish over and over untell I’ve perfected it. (My quail almondine recipe is so good even I can hardly believe it. )

This prinsiple applies actually to the mastery of anything. In college, I always made the highest grade on every exam in every class because my tollerence for repetition allowed meto read the same material over and over and over until I knew it backwards, upside down and sideways. In one of my classes, the other students took aside after an exam and said, “How do you do it?”
I knew what they wanted to hear. They wanted to tell them something like, “I record all the lectures and play them again and again while I sleep.” My answer? “ I study. I study long, hard, and often.” The repetition involved never bothered in the least. Plus, I sincerely wanted to learn the coarse material. That always helps.

Please teach your children about these advantages, and then teach them the most important social principle I know, and I didn’t learn it until college. Teach them this because autistic people are socially awkward. The principle: All anyone in the world wants is to be liked. If you show that you like someone, they will like you back. Everytime. Even if you are autistic and awkward.

But.... don’t expect these friends to be okay with listening to the same CD more than one time in a row. Teach your kids to save that for their alone time.

Autism rocks!

I live with chronic pain from DISH or Diffuse Idiopathic Skeletal Hyperostosis. This is a form of arthritis that affects the bones along the vertebrae and the ribcage. It’s also known as Forestier’s disease. I try to walk as much as possible and use the pool when I can. However, I’m finding it harder to walk for more than 15-20 minutes without severe pain in my lower back. I’ve started using a cane for support and it helps somewhat, but would appreciate any ideas for pain management that have worked for you. #ChronicPain #DiffuseIdiopathicSkeletalHyperostosis

I live with chronic pain from DISH or Diffuse Idiopathic Skeletal Hyperostosis. This is a form of arthritis that affects the bones along the vertebrae and the ribcage. It’s also known as Forestier’s disease. I try to walk as much as possible and use the pool when I can. However, I’m finding it harder to walk for more than 15-20 minutes without severe pain in my lower back. I’ve started using a cane for support and it helps somewhat, but would appreciate any ideas for pain management that have worked for you. #ChronicPain #DiffuseIdiopathicSkeletalHyperostosis