Birth Defect

Hi, my name is Gburgjo.

#MightyTogether #Anxiety #Depression #Fibromyalgia #PTSD #Grief . I also have chronic pain that was caused by an intestinal birth defect.

My pain is going from my right butt down my right leg to my toes. I took more Norco about a half hour ago. My caregiver put some CBD cream on my back and hips and it took the edge off. But right now it's at 7. I'm still mildly functional. It hurts to stand up and walk.

My mom thinks I'm faking my pain. I told her about having a birth defect in both hips and she said if that was true my pediatrician would have seen it.

She hasn't seen me in 7 years. She doesn't know how I'm doing. She thinks I shouldn't have back pain anymore cuz I had surgery. She thinks I'm addicted to narcotics. I have explained so many times but she's willfully ignorant.

She constantly compares me to her 2 biological daughters. One of them gets migraines. My mom said I'm just lazy because my sister has a job. I tried to explain how she and I aren't related so she can't compare us. (I was adopted)

I love my mom but she treats me poorly. We haven't talked in 4 days. I have no desire to talk to her. I wish I had a mother figure who genuinely loved me unconditionally.

#Depression

#Anxiety . I’ve been staying at my daughters because I broke my right hand and am missing most of my left hand due to a birth defect. Mostly she’s been very caring, helping me and taking me to appointments and helping with tasks it is difficult or impossible to do. But twice in the last couple of weeks I’ve been here, she’s vehemently accused me of gaslighting. Apparently her new therapist diagnosed me as gaslighting her. Or she lied to her. I don’t know. If I disagree with her about anything, she flares up. This is a relationship that has been very difficult. My bipolar II changed into Bipolar 1 after postpartum kicked it into overdrive. I am already wanting to leave especially when she has said three times “we need to establish an end date for you to be here” and then when I say ok, she accuses me of getting all better (not so) and leaving when I don’t need her, and upsetting the kids. I’m not arguing or saying anything to or around the kids. My car is in the shop near here (I live 45 miles away), so I have no car until 9/6. I’m told to call my son, who she has always said I favored, or she’ll drop me off at my apartment (alone and with no car). I have agreed to go if she wants me to but that is completely turned around as though I’m leaving on purpose,etc thanks for listening. I’m 70 and my daughter is 36. If I have to I’ll stay with my son. Never again at her house. #BipolarDepression

Hi, my name is gkpoole1227. I'm here because I had a congenital birth defect in my heart. I had a bicuspid instead of a tricuspid aortic valve which had caused an aneurysm in my aortic arch. In April of 2021, I had my aortic arch and my aortic valve replaced during the same operation. Directly after the surgery, for three days I suffered with delirium, where I did not know my husband or daughter. It was a very scary time. I would also say I experienced brain fog for months. I have had some vision problems as well- though that seems to be improving now that I am 2 years out. As some other women have stated, I also had some hair loss after the surgery.
Kimberly Poole

#MightyTogether

Hi, my name is MummyTut82. I've been diagnosed with so many illnesses diseases that at age 40 and Mum of 3 darling children, I have lost all quality of life and I'm scared of myself honestly.. For I can't keep just 'existing' like this and I know it is destroying my children's hearts watching me so sick ... it breaks me more every minute coz I honestly believe they shouldn't have to see Mummy this way anymore it isn't fair on them... #icantdothis😮‍💨 #heartbroken💔 #idontwanttoleavemybabies😪 #itisjustfartoomuchtohandle💔

#MightyTogether #PTSD #Fibromyalgia #Anxiety #Depression #ADHD #OCD #Grief #Leukemia #FunctionalMovementDisorder #DiabetesType2 #Cancer #RheumatoidArthritis #OpticNeuritis #NeurocardiogenicSyncope #DemyelinatingNeuropathies #CeliacDisease #InappropriateSinusTachycardia #congenitalheartdefect/Disease #BirthDefect #IronDeficiencyAnemia #Arthritis #ArteriovenousMalformation #SuicidalThoughts #chronicactiveepstein-BarrVirus #ChronicIllness #polycysticovarysyndrome(PCOS) #Hyperparathyroidism #ThyroidCancer #Cardiomyopathy #CardiovascularDisease #CongenitalVascularCavernousMalformations

Hi there,

My name is Theo and I'm currently a freshman in
college. I was born with an extremely rare birth defect called a type three laryngeal
cleft. I had my cleft repaired for the third time
about three months ago; I was in pretty
significant isolation during the summer as I
needed to limit my talking and couldn’t afford to get sick. I was extremely
excited for college, but unfortunately came down with a nasty case of COVID the first week. The repair failed due to coughing and I’ll have to undergo another surgery in early January. I'm
heartbroken and feel totally defeated. Being
isolated for 7 months sounds depressing
and demoralizing. None of my peers have ever
heard of a laryngeal cleft, much less know how to support me. No one I know can relate to having 12 surgeries and the toll that comes with them. So overall, I'm feeling a little lonley, fragile, and cheated. I would love to chat with/hear other peoples' stories! #MightyTogether #LaryngealCleft #RareDisease #Lonliness #BirthDefect

A wonderful person on here gave great advice that knowledge is power. It feels very true for fibro at least for me. Along with a recent diagnosis of fibro, I also deal with OCD, Anxiety, & Depression. I also deal with recent diagnosis of PTSD & a birth defect in my kidney.

I recently had surgery on my kidney 4 days ago. I told the doctor that I had fibromyalgia before the surgery. Unfortunately, I just googled today surgery and fibromyalgia. I feel irritated with myself because now I’m in a lot of pain and I just found out there were things I could suggest to my doctor to decrease my pain. Like local anesthetic into injection sites and magnesium drip so I didn’t have to wake up from anesthesia with so much muscle cramp pain.

I feel irritated with my doctor that she didn’t know these things but as a healthcare professional I understand why.

I just feel like I have to know everything all the time and it’s exhausting, lonely, and disheartening. #Fibromyalgia #Surgery #DaVinciSurgery