May 9, 2014

Thank you all for visiting my blog!  That really encourages me!  I can tell from the increasing page views that some of you have been waiting for another post. 😉

I’m sorry my blog posts have lately been few and far between….I’ve been busy trying to manage all these ongoing symptoms which are getting significantly worse.  To the stranger’s eye, I look completely normal.  And yet, this is just a small part of what’s going on:

My left eye is getting more and more paralyzed.  It hasn’t been fun losing so much range of motion, and it’s weird that I can’t look to the left unless I move my whole head.  But I’m so thankful that my right eye is unaffected at the moment and can move very easily!

I’m now dealing with ongoing hip pain, and physical therapy thinks this is a hip impingement.  The problems never end.. :/  This is probably because of EDS and all the muscle weakness that I’m experiencing as well.

The nerve pain in my feet has been increasing in severity—my pain medicine dr. is concerned that I may have a nerve injury component worsened by not getting enough nutrition.

Next Friday is the day my GI dr. will be placing an NJ feeding tube through my nose, past my stomach, and all the way into the middle of the small intestine.  I’m glad this is just around the corner because I’m still steadily losing more weight.  I’m nearing the weight that I was at when just 10 years old….that’s how bad this is becoming!

I have no clue what my prognosis will be in 1, 5, or 10 years.  Mitochondrial disease is so unpredictable.  But this I know: my future is fully in God’s hands, and I trust Him completely! 🙂

Post written byKerissa

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