Interstitial Cystitis

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 LonerD. I'm here because

#MightyTogether #Anxiety #Depression #Fibromyalgia #ADHD #Grief #InterstitialCystitis

Hi, my name is iamsickandtired1994. I'm worried about getting a laparoscopy? Doctors want to check for endometriosis…after 10 plus years of IBS and ICPBS symptoms. Has anyone done this procedure? It it worth it?

#MightyTogether #IrritableBowelSyndromeIBS #InterstitialCystitis #ChronicFatigueSyndrome #Endometriosis #PTSD

#RheumatoidArthritis #BackPain #ChronicPain #InterstitialCystitis
I’m honestly not sure what I have im dealing with a lot of health issues and have been for years but never paid much attention to it. But I remember always putting icy hot, bandages and taking pain relievers, and then forgot about it. And now that I’m on disability leave and haven’t been working I notice my body is still in pain even when I do minimal exercise. It tires me out so much, and I have appointments coming up with a podiatrist, rheumatic and a urogynecologist. I’ve healed from my bladder infection but I’m still struggling to urinate. And I keep going in circles about what I could possibly have and I just can’t figure it out. I’m really looking forward to going to my doctors appointments next week. I’m tired of being in pain. :(

Living with my chronically ill, autistic, BPD, young adult daughter is like living with an abusive spouse ( I would know cause I lived with one for 16 years before divorcing him). I can’t kick her out cause she isn’t totally capable of living on her own and doesn’t have much income and I don’t have any family that she could go live with. She doesn’t drive either so is totally dependent on me to get her to her part time job and frequent doctor appointments. However I am chronically ill too with several difficult conditions and work full time and care for my youngest daughter that is totally disabled from her chronic illnesses and it is just too much to always deal with the continual cycle of ups and downs she goes through due to her mental and developmental diagnoses. She is on medication that is helping some to stabilize her moods and help her severe anxiety, but she still goes into really awful episodes where her thinking is all over the place and she lashes out verbally and accuses me of things that don’t even make sense. She yells and cussed at me, calls me names and says I’m stupid and don’t really love her. She does the same to her sister but on a lesser scale than with me. In those episodes I can’t reason with her and she is determined that I’m causing her problems. When she is clear headed she can be kind and loving, but she always has another episode before long that is horrible for me to deal with. I feel I’m being verbally and emotionally abused just like I was from my ex- husband. I want a peaceful life and I just can’t seem to ever achieve it due to the whole situation. Has anyone else had experience with this kind of thing? I would really appreciate input. #Fibromyalgia #AutismSpectrumDisorder #BorderlinePersonalityDisorder #chronicmigraine #ADHD #Anxiety #Depression #ChronicFatigueSyndrome #Dysautonomia #UlcerativeColitis #EoE #OCD #DisorderedEating #InterstitialCystitis #Endometriosis #IBS #FoodAllergies

How many of you have had to quit school due to chronic health problems?

WARNING ⚠️ the rest of this post is lengthy!!!

I have been working on my bachelors in community health through online courses (one class at a time) for the past seven years. A few months prior to beginning my degree program I was diagnosed with fibromyalgia following a car wreck that required a neck fusion surgery. From there my chronic illness diagnoses have continued to accumulate. I now have chronic migraine, endometriosis, interstitial cystitis, chronic fatigue, degenerative disc disease, tinnitus, IBS, C-PTSD, and a long list of food and environmental allergies. I have 2 sons and 2 daughters. My youngest son (15yr) has serious ADHD. Both of my daughters (21yr & 20yr) have long lists of chronic health conditions. They live with me and probably will for their whole lives due to the impact of the disability that their issues cause. Neither girl can drive either. The oldest has Asperger’s, fibromyalgia, Ehlers Danlos, ADHD, C-PTSD, severe anxiety, depression, Eosinophilic Esophagitis, IBS, mild Ulcerative Colitis, numerous food allergies and possible Borderline Personality Disorder. The youngest has Chronic Fatigue Syndrome, Dysautonomia, C-PTSD, depression, anxiety, disordered eating, restless legs, Eosinophilic Esophagitis, constant skin picking, and numerous food allergies. All three of us girls and my youngest boy has severe sleeping problems. Me and both my girls have applied for and been turned down for disability. Up until 2022 I had been a stay-at-home, homeschooling mom. At the beginning of 2022 me and my 2 girls and youngest son ( oldest son is in college and pretty much living on his own) loaded up and left my narcissistic abusive husband of 16 yrs. and began to start over in a tiny apartment in a small town with me re-entering the work force and starting a full time job in retail and officially divorcing him at the end of that year. My youngest daughter has since tried to commit suicide twice and my oldest has had several mental breaks that were extremely hard to deal with. Throughout the whole time I have continued with my school classes. Determined to finish what I started. However, my health has continued to decline from all my illnesses and the stress of my life and it is taking a toll on my cognitive abilities. I took a 8 month break from my classes but have started back recently and I’m struggling to keep up with the assignments and not learning as I know I should be. I only have 6 classes left, that will take me the next year to complete due to the schedule I’m following, but my body, mind and finances seem to be making it extremely hard for me to keep going. I’m really considering quitting, but feel like I would be a real failure if I didn’t finish it.
If you read all this……Thank you! 🙂 #ChronicFatigue
#Fibromyalgia
# Migraine
#IBS
#InterstitialCystitis
#ChronicPain
#EhlersDanlos
#c -PTSD
#Autism
#Anxiety
#Depression
##BrainFog

I don’t know where to go from here.

Not only do I have multiple conditions that have caused me to be on disability, I have 3 kids, and been trying to get a medical billing job part time at home, but I cannot get my own space. We can’t move, we can’t add on, I can’t get a office shed.

How can we get ahead in life? I’m so tired of trying to push forward that I’m just about to give up trying, let the bills go to collections and disappear.

I also can’t find any friends who are willing to hang out online since I can’t go anywhere outside of my house.

I just need to know I’m not alone here.