aspiration pneumonia

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

I’m having #Anxiety due to #COVID -19 and being high risk. Living with #PostPolioSyndrome #GuillainBarreSyndrome . #ThyroidCancer
Thyroid surgery has ruined my life. If I knew what the results would be, I would rather be dead. It #Paralyzed my vocal chord which left an opening to my airways causing #AspirationPneumonia with #Sepsis . By the time I was taken to the ER my temp was 103.7F. Blood Pressure was 100/50. I had stopped breathing. I was logged in as ‘Acute Respitory Failure’. My organs were shutting down. And I was admitted to ICU for few weeks. Then spent a year of #PhysicalTherapy to learn how to do simple things like walking or turning pages.
Then came 2.0.0.5 years of nothing but hell. All the progress I made was mostly washed away.
Ironically, I totally lost my voice and my career is in #Music #songwriting and #Singing . But that’s no longer possible.

MY DILEMMA

And the ENT doctor said he can do a permanent repair (surgery) and my voice would be sort of normal. I’ve had too many surgeries already.

If have #Surgery I’m scared to death. I will have more complications. I get #PTSD just thinking of anything with the name #Surgery of # Procedure.

I can’t go through more surgeries. I’d rather be dead than to keep suffering and wasting my life seeing doctors and being in hospital. For what?

My one problem is the effect it will have on my wife, my family, & three I’m not thinking of suicide. I’m just thinking of stopping all the BS. What will be wi

#AspirationPneumonia