My story of living with a chronic neuromuscular disease.
Friday, July 13, 2012
The benefits of a breathing machine with Myasthenia Gravis
After two and a half years of living with this illness, my pulmonologist said, your diaphragm is so weak, you either need a Bi-Pap or a treach.  
So, I swiftly booked a sleep study to try to get the machine.  Thankfully, I had enough "events" to get the machine.
I love my bi-pap!  Yesterday I was so weak I normally would go to the hospital, but I was able to use my bi-pap.  What a great alternative!  While I'm still run down today, I am hopeful with continued rest I wont wind up back in the hospital.
In other news, I have had to file for SSDisability. I know, I should have done it long ago...but I'm stubborn and hopeful.  I wanted to try to keep working and hoped for a remission.  That's not in the cards.  We have amazing friends who are running a fundraiser.
Pray for our family I have been the sole source of income for our family and it
is hitting hard.  Some resources aren't available to us since we have a land contract vs. a regular mortgage.  
Anyway, I am again overwhelmed by the kindness of friends and strangers.  We will get through this, we have to!
Did I mention that voice recognition software is awesome, except when you have a slurry voice..well, that is it for today, my eyes and speech are going.  I wish you all a wonderful, strong day!
~Jen
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This is what i am looking for ........really you made my day.
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I'm so happy this helped Jones:)
DeleteCameron - I have full on double vision & accidentally marked your comment as spam. If you could contact me direct (via my profile) or my YouTube channel pajejoci - I would be happy to email you.
Thanks,
Jen
I have visited your blog for the first time and found it a well organized blog. thanks for sharing
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I read your blog and found the effective knowledge about benefits of breathing machines.Thanks for sharing this information.
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Myasthenia gravis is a serious disorder causing progressive muscle weakness.
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