Gastroparesis

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

Hi, my name is fridgewraith. I'm undiagnosed, mostly, and still looking for answers, and I found this app tonight.

#MightyTogether #Depression #OCD #Gastroparesis #Undiagnosed #Anxiety

Hi, my name is Bbsmith04. I'm here because

#MightyTogether #Gastroparesis ... I can't eat or sleep or poop.

I am glad to join this group as no one understands the bond that I have with my two dogs. I had an atypical case of guillian barre where I lost became weaker and weaker over the course six weeks to the point where I could not get up, walk, or sit up unassisted. One of my dogs was unable to go up the stairs. In the last few weeks before I went into the hospital I spent most of my time upstairs in my bedroom and the bath across the hall. I missed my dogs terribly. They didn’t see me differently I was still the person who gave them snuggles and they would still light up every time they saw me. They were the only ones who could make me forget the horror I was going through. I would gather all of the strength and energy I had to scoot down the stairs to see them. They brought me more love and comfort then anything else could at the time. For reference I have two cute gentle and lovable giant dogs so carrying them up the stairs was not an option. They continued to bring me joy and happiness post hospital stay and throughout my journey to recovery. They even learned to walk while I “chased” them trying to get their toy. The thing about dogs is that no matter what state you are in they will always see you as their person. I don’t think any of my family truly understands how much they helped me get to where I am today or how much they both truly mean to me. They kept me going when it would have been easy to give up. Even now while I have mostly recovered from my guillian barre they bring a smile to my face when I have bad days with my health from my other illnesses. #womansbestfriends #GuillainBarreSyndrome #Dysautonomia #Gastroparesis #SmallFiberNeuropathy

Hi, I am new to The Mighty but I have had gastroparesis for the last ten years, (only 8 since official diagnosis). I am excited to join a group with those who have this same difficult and stubborn condition and who want to try and focus on the positives.