Autoimmune Autonomic Ganglionopathy

Hi, my name is Lily. I'm here because I have several rare chronic illnesses plus some not so rare ones. Two that are the primary behind a lot of secondary are Autoimmune Autonomic Ganglionopathy and Autoimmune Gastrointestinal Dysmotility. My mom also lives with myasthenia gravis.

#MightyTogether #Migraine #AutismSpectrumDisorder #ADHD #Dysautonomia #AutoimmuneAutonomicGanglionopathy #Gastroparesis #EhlersDanlosSyndrome #deltagranulestoragepool #POTS #PolycysticOvarySyndrome #Scoliosis #accomodationparesis #MastCellActivationDisorder #longcovid

Hi, my name is AAGJenn. I'm here because I have AAG, and I want to make connections with other people going through similar experiences.

#MightyTogether #AutoimmuneAutonomicGanglionopathy

My 23 yo dd was just diagnosed today with AAG. What a long path it has been for the last 9 years since symptoms first appeared. The relief of finally having a diagnosis but now the worry of what next. Where are some good resources to fund to help me better understand what is going on.

Thanks
Kelly
#AutoimmuneAutonomicGanglionopathy

By far the most debilitating aspect of #AutoimmuneAutonomicGanglionopathy for me is the GI impacts. I was recently diagnosed with #Gastroparesis and I am in constant pain and discomfort. I get sick so easily and randomly after I eat. Like some days I can eat [insert food here] and be fine, other days I eat *the same food* and be debilitated with nausea and abdominal pain, and all the other fun GI symptoms.

There seems to be no rhyme or reason to any of it. No predictability. It’s so hard. I have family visiting from out of state that I haven’t seen in a few years and I can’t even spend time with them because I am so sick tonight. Anyway, just feeling alone in it all.

It is so bizarre to me that I can eat [insert random food here] one day, and be totally fine. But I eat *the exact same thing* another day, and I’m incapacitated by intense nausea and abdominal pain. I wish I could throw up everything in my stomach right now, but that’s super triggering to me as someone who had an eating disorder when I was a teenager.

I just want to have a normal, healthy relationship with food, but I can’t because I never know what’s going to make me sick. It changes day to day. So that leads to a fear of food at times. I’m better than I was at the beginning of this illness (among my other autoimmune diseases like #AutoimmuneAutonomicNeuropathy and #AutoimmuneAutonomicGanglionopathy ).

Thing is, I feel like doctors don’t take me as seriously because I’m not dropping tons of weight like I did in the beginning. I’ve gotten to what they consider a low-normal weight for my height and it’s like they just think I’m now fine or “good enough” based on that alone. Meanwhile I’m in miserable pain and discomfort every single day.

I’m desperate for relief and just needed to vent. Thanks to whoever listens. #ChronicIllness

Hi, my name is stormydamsel. I’m a single mom fighting severe autoimmune issues while trying to still work and care for my daughter. Looking for a supportive network of people to connect with.

#MightyTogether #Dysautonomia #AutoimmuneAutonomicGanglionopathy

It seems like everyone is always talking about how life is a journey. That we should enjoy they ride. Well I can’t even enjoy an ice cream cone without by jaw aching from weakness. How do they except me to be happy, optimistic and talkative all the time when I cannot even smile without pain. Let alone sit for hours listening to someone’s else’s problem. I CANT DO ANYTHING RIGHT NOW!

In reality, I know that this is just a rough patch. That I am going though a flare and this too shall pass. But then I feel I should be able to go through this part of my journey without expectations of “normal” people. These people that I know love me, but don’t get it.

Right now, this flare is lasting longer than 3 months. My family is waiting, not so patiently anymore, for me to move on from this. To “pick myself up and move forward” because you cannot wallow forever. I don’t want to wallow forever. I want to grieve the part of my journey that my condition is taking from me. Birthdays, Anniversary’s and much more that I am in able to enjoy due to the looming cloud that is Autoimmune Autonomic Ganglionopathy.

My journey will continue and I will be stronger when this’s rough patch is done. I just wish it would finish soon.