I’m the absent originator of this blog. Please listen

i started this blog many years ago. I think it was Jenny923 ? let me retell my story.

I was taken a month early by C-section bc my mom's dr said i would die bc of RH. my brother had a mild case 15 months earlier when he was born. it was 1964, i weighed 4lbs and received 5 blood transactions, which my dad explained was removing all my blood and given fresh blood. (Vs a transfusion of adding new blood without removing existing blood). I was in an incubator for a month and never touched or held. i learned my mom wouldnt visit me for 3 days convinced I'd die.

I left the blog not because I wanted to, but my health nose dived. i apologize. i had to stop working, had to move, then my husband of 26 years left me due to my health.

i still get emails of posts and try to read most of them. its depressing because i experience what you're experiencing. I understand your frustration, pain, and struggles.

i will reintroduce myself. I'm Jennifer and live in the USA in Michigan. i hate this forum doesnt auto correct capitals and apostophes. i will not correct this so i apologize to u readers.im divorced now almost 5 years.

In that time i have endured starvation due to an undiagnosed abdominal anomaly and continue to need to address it. i was diagnosed with some genetic/birth disorder of diverticulitis at the age of 20. two yrs ago i had a flare and ended up bleeding out rectally and needed 11 tranfusions and the entire removal of my large intestine. i was alone the entire time.

i live alone. since my surgery my depression skyrocketed as did panic attacks. CBD helps with anxiety/panic.

To recap my health problems my father said my pediatrician said this would occur in middle age - my health would deteriorate. what did he know that we all need to know? WTF?

**depression

**anxiety

**osteoperosis plus softening of my bones with multiple breaks/fractures since age 40.( I've lost 2" in height in last 5yrs)

**duodenal stenosis (shrinking of tube from duodenum to stomach so food/water is vomited and not absorbed)

**fibromyalgia

**chronic pain/fatigue/muscle spasms

**chronic diarrhea for 20+ years undiagnosed - not IBS, not IBD or crohns. just going up to 20 times a day. could have been diverticulosis but who knows?

**racing heart-always. drs dismissed it as nervous at the office. resting heart rate always over 100. (i was 5'1" and 100 lbs active and eating healthy)

** seizure, while looking for parking at grocery store. thank god i hurt no one) - heart rate 150 at hospital. i felt nothing abnormal which freaked drs. that rate was normal to me.

**TIA a few months later. Put on inderal 3 times a day. it helps lower my heart rate and helps amazingly with anxiety.

**theres more but thats enough.

Once this COVID epidemic is over WE NEED TO WORK TOGETHER and find a group (ive read of a few) who specialize in obscure/rare diseases /conditions and email in full force a demand for a study into our disease. There absolutely cannot be so many similarities in all of our collective health experiences to say this is a coincidence.

i appreciate you all. I hope this blog has been helpful to you.

Jennifer

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