Interstitial Cystitis

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.

I will never understand how it is possible to be considered by my doctor to be sooo healthy and yet I am horribly sick at the same time!!! Chronic illness sucks!
Anyone else struggling with understanding this concept?

#Fibromyalgia #ChronicFatigue #Endometriosis #InterstitialCystitis #DegenerativeDiscDisease #Migraine

I just had an appointment with my urologist and had a dmso instilation which I’m going try for the next six weeks but we also talked of surgery and was wondering if anyone had a hydrodistention surgery and what your thoughts or experiences were regarding it