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Added on Wed 21st Mar 2018 5:51pm   Last edited on Tue 3rd Apr 2018 10:40pm
#1

Jasmine Robinson

Im new...and feeling a little awkward

I'm neither very funny nor clever, so I'm just not the best with introductions. I'm Jasmine and I'm an African-American woman with two kids.  I was recently a high school teacher covering biology, chemistry, and physics, but had to stop working about eight months ago.  I also happen to have a rare hereditary disease called hemochromatosis.  It causes my body to build up too much iron.  When that's not treated it leads to various organ problems.  Unfortunately, low iron and too much iron have a lot of the same symptoms.  I'm also dark-skinned, so my skin didn't show any discoloration that would tip someone off to my issue. I had health insurance through work but the deductible and copays were expensive, so I was satisfied with just seeing a nurse practitioner at the walk-in clinic instead of seeking a specialist.  Eventually, all those issues came together to create the perfect storm of organ failure.  I'm currently on dialysis and I have cirrhosis of the liver.   I can't discuss my general concerns and fears with my friends or family, so I came here instead.  



Added on Sat 24th Mar 2018 8:33pm   Last edited on Sat 24th Mar 2018 8:33pm
#2

Josh Reynolds

Welcome to the forum, Jasmine.  I think you'll like the warm camaraderie here.  It sounds like you're going through a lot, so I hope you'll stick around because you can unload some of that burden here. 

Added on Tue 27th Mar 2018 7:05pm   Last edited on Tue 27th Mar 2018 7:05pm
#3

Ruth Barlow

I can relate so much to your situation Jasmine.  I have a rare genetic disease called scleroderma.  It basically causes a person to turn into a mannequin over time, or at least that's what it feels like for me.  Having a rare disease carries certain issues like the limitations of medical care and research because the money just isn't there.  Another problem is having to explain your disease over and over and being treated like a spectacle.   I understand where you're coming from and wanted to let you know that you aren't alone in this.  I enjoyed reading your intro and hope you'll stick around!

Added on Tue 3rd Apr 2018 10:40pm   Last edited on Tue 3rd Apr 2018 10:40pm
#4

Jasmine Robinson

Thank you for the friendly welcome!  My sister visited for Easter dinner and I showed her this forum.  She's delighted that I've found such a supportive group who understands what I'm going through.