THIS IS MY STORY . . .

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May 15, 2013

I’ve been on crutches for 8 months now.  8 months.  When I was on crutches for 6 months back in 2011, it was kinda exciting (it being the “first” time).  But now….not so much.  They’re getting to be a real nuisance. 😉  I wish I could go back to the “good” ol’ days when I had my spinal cord stimulator and could walk and run!  I sure miss my SCS!  But….I know God has a good purpose with all of this, so I’m gonna trust Him.  He knows best. 🙂  And I do thank Him for all that I’m learning through this trial.

This year, it’s been getting harder to use crutches for long distances because I’ve been so fatigued and this left-sided weakness is worsening.  Sooo, guess what?  This girl is gonna get her own wheelchair! 😀  I never thought I’d want one or even get to this point, but I really want to go to places (more easily) like the mall or the library.  I still hope I don’t have to use one for very long, but in the meantime, I’m excited!  It’s going to be a fast, lightweight wheelchair (not a heavy hospital one ;).  Maybe I’ll be a wheelchair racer. 😀  I have an appointment at the OHSU seating clinic on June 5th.  I’ll get measured there by a physical therapist and wheelchair rep.

Next week, I have an appointment with my pain dr.  I haven’t seen him since January!  Can’t wait to hear his thoughts on what the doctors in Cincinnati think.

To my great disappointment, Seattle Children’s mito program called to tell us that they are booked until October.  And since I’ll be 21 then, they won’t be able to see me. 🙁  They gave some names of doctors who have mito patients, but even this certain neurologist at University of Washington is booked out as far as October, too.  There are very few mitochondrial specialists in the nation, so I’m not sure what we’re going to do..  I found a dr. in Texas who runs a mitochondrial center.  She said she could see me within a month or two. 🙂  But….Texas is still pretty far away.  At least I can keep her in mind.  I still haven’t done the autonomic nervous system testing but hopefully within the next two weeks!

I’d appreciate prayer for patience.  I guess you could say I’m getting a little weary of this journey..  I have a really hard time waiting!  But then I look at these pictures below and am in awe of God’s wisdom and power (in creation and in my life).  He has a perfect plan, and his timing is just right!  So until this journey is finished, I will keep pressing on!
 

I took these pictures when we were on the plane heading home from Ohio.  Mt. Hood is gorgeous!

Post written byKerissa

This post has 2 comments

  • It is so hard to get into Mito Specialists. If you are considering Houston I believe Baylor has a Dr. Scaglia. Atlanta has Dr. Kendall(private practice,easier to get in, and terrific), I believe there is also a Dr. Shoffner in Atlanta.
    The Mito Clinic at UT is primarily pediatrics and I think more focused on Leigh's.. mixed reviews and not really set up to handle adults though they have been gracious to see adults now and then I think..

    I believe there are a number of great Mito Drs. in CA. I also think that there is a few at researcher/drs in OR through OSHU not certain on that.. also, if you contact the UMDF or Mitoaction both maintain current lists of Mito Specialists and may help finding 1 that can get you in fastest and which ones are adult care focused.

  • Thanks so much for your input! 🙂 This is great! I will definitely research these doctors and look into this more.

    I did find a dr. at OHSU who has mito patients, but the clinic said they mainly diagnose instead of treat..

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