I love to run. :) Yes, I can't run long distances yet... But
whether it's running to the mailbox at the end of our driveway, running
from a restaurant to our parked car, running up our long flight of
stairs two steps at a time, or running to our couch to read my Bible or a
good book, it fills me with PLEASURE! :) You may think, "What's so fun
about running a little?" Well, it's because I was on crutches for 6+
months last year!
Before I had my SCS implanted, I went through
grueling months of physical therapy, "learning" how to walk again. It
was painful! At my first PT appointment, that's what I had to learn to
do. WALK. I was like a toddler learning how to walk. I had to walk
for 1 minute, 3x a day for the first week...then 3 minutes the second
week...then 5 minutes...8 minutes...until I could walk for 25 minutes at
a time! It wasn't a fast walk, though, because the CRPS pain was so
severe. And I couldn't do one tip-toe with my right foot no matter how
hard I tried because it felt like a knife was stuck in the ball of my
foot! But now, after my surgery last September and still more months of
physical therapy, I can now run, jump, AND tip-toe 20x at one time with
my right foot! God is good. And He was good even when I couldn't
walk, even when I couldn't tip-toe.
So THAT'S why I love to
run. And when I run, I feel so free! When I was thinking about that, I
thought about how it's the same with my life as a follower of Christ.
Because Jesus washed away my sins when He died on the cross for me, the
chains of sin no longer keep me in bondage. I have been set "free in
Christ Jesus from the law of sin and death" (Romans 8:2) "For freedom
Christ has set us free; stand firm therefore, and do not submit again to
a yoke of slavery" (Galatians 5:1).
On this journey, I don't
want to "run aimlessly" (I Corinthians 9:26), I want to "run with
endurance the race that is set before [me], looking to Jesus, the
founder and perfecter of [my] faith..." (Hebrews 12:1-2) My friends,
join me in this race! :) Keep looking to Jesus!
P.S.
This coming Monday, Jan. 30th, I will be having my third stellate
ganglion block done. I would greatly appreciate your prayers once again! :)
Life with Small Fiber Polyneuropathy, EDS Type III, POTS, Mitochondrial DNA Depletion Syndrome, and Wilson's Disease
Friday, January 27, 2012
Wednesday, January 18, 2012
The Lord is my Strength
Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls,
yet I will rejoice in the Lord,
I will be joyful in God my Savior.
The Sovereign Lord is my strength.
~Habakkuk 3:17-19
Though it's almost been a year since I was diagnosed with CRPS in my foot
and I'm now dealing with it in my hand,
though I'm 19 and haven't yet been able to continue my education after high school, like the rest of my graduating class,
though I can't play violin yet because of the pain and stiffness in my fingers,
though faced with the uncertainty of the future
and how there is no cure yet for this condition,
yet "I will rejoice in the Lord, I will be joyful in God my Savior"
BECAUSE
The Sovereign LORD is my strength.
Now,
after reading a few of my "thoughs," you may feel sorry for me, but I
don't want you to. I just want you to know that God is still good in
the midst of suffering, and I have made it this far because of the strength that my Sovereign Lord gives me for each day.
Yes, it's been hard, but I actually thank God for this experience. If this never happened...
-I wouldn't know all my caring doctors, nurses, and medical assistants
-I wouldn't have been blessed with the friendships of my therapists and even the front desk receptionists
-I wouldn't have become as familiar with medical terms and treatments (which may prove helpful later on!)
-My relationship with Christ and love for Him probably wouldn't be as strong
-I wouldn't have had a chance to share the love of Christ with those at OHSU and PRA
-and the list goes on! :)
Wednesday, January 11, 2012
What I do at occupational hand therapy...
Many people ask me what I do at OHSU occupational hand therapy, so
I will tell you here. :) Occupational therapists are very similar to
physical therapists, but they also focus on fine-motor skills and
desensitization. Here are some examples:
As an ending to this post, I want to leave this poem with you. May you be refreshed and encouraged by it!
- Usually at the beginning of my treatment appointment, I stick my affected left arm in this machine that blows out warm air and dried, ground corn husks as a way of desensitizing my nervous system. Pretty cool. :)
- I'm a violinist, but I haven't been able to play for two months now. So, one time, my OT spread thera-putty on this long plastic piece, and I had to hold it like a violin, while pressing my fingers into the putty and "playing" music scales like I'm pressing into my violin strings.
- Sometimes, I practice picking little things up (marbles, keys, buttons) with the finger that hurts the most and dropping them into this paper cup. Occasionally, this can get pretty difficult to do because my fingers shake severely sometime!
- One of my favorite things to do at therapy is play catch with my OT! :) It hurts my hand, but he makes it enjoyable!
As an ending to this post, I want to leave this poem with you. May you be refreshed and encouraged by it!
"When you pass through the waters"
Deep the waves may be and cold,
But Jehovah is our refuge,
And His promise is our hold;
For the Lord Himself has said it,
He, the faithful God and true:
"When you come to the waters
You will not go down, BUT THROUGH."
Seas of sorrow, seas of trial,
Bitter anguish, fiercest pain,
Rolling surges of temptation
Sweeping over heart and brain---
They will never overflow us
For we know His word is true;
All His waves and all His billows
He will lead us safely THROUGH.
Threatening breakers of destruction,
Doubt's insidious undertow,
Will not sink us, will not drag us
Out to ocean depths of woe;
For His promise will sustain us,
Praise the Lord, whose Word is true!
We will not go down, or under,
For He says, "You will pass THROUGH."
by Annie Johnson Flint
Wednesday, January 4, 2012
Charging My Battery :)
Update: This past Friday, I had my second stellate ganglion block at the OHSU CPC. And to my disappointment, the procedure supposedly didn't "block" again. My doctor thought maybe the stellate ganglion nerve bundle is lower than normal which is why they can't get effective blocks... But here's some good news! :) I actually had a delayed reaction to it! On Sunday, I noticed that my left hand, normally very cold, was really warm. I even had sweat on my fingertips! Also, the numbness and extreme sensitivity wasn't as bad! So it looks like I responded well to the block this time! :) Not sure yet if he'll want to do more of these again. Right now, I'm testing this ketamine/amitriptyline topical gel that he prescribed to see if it will help the pain...
As I write this, I'm charging my IPG (implantable pulse generator). :) About every other day, my battery gets really low, so I HAVE to charge it. So I strap on my St. Jude Medical belt around my waist and position the charger "wand" right against the battery in my back! Charging takes about an hour and a half, so during this time, my stimulator's off which means I can't walk very fast. ;) Interesting, huh? You see, when my stim's on, I don't notice the pain as much. So when it's off, the CRPS pain is far more noticeable. To be honest, I don't exactly like charging because I can't move around quickly and the pain's definitely worse. But as I think about this, having to charge is good for me. I have to learn to be patient and "slow down" in this fast-paced world. And, charging the IPG reminds me that I need to charge my other "battery"---spend time in God's Word on a daily basis. Many times, I'd rather do something else, but I also want His Word to be "sweeter than honey to my mouth" (Psalm 119:103). So as I thought about it, how can that desire grow? By sitting at Jesus' feet. From all that has happened, I know God is developing perseverance in me! I still fall short many times, am still a work in progress, but from this trial, by God's grace I now realize this:
As I write this, I'm charging my IPG (implantable pulse generator). :) About every other day, my battery gets really low, so I HAVE to charge it. So I strap on my St. Jude Medical belt around my waist and position the charger "wand" right against the battery in my back! Charging takes about an hour and a half, so during this time, my stimulator's off which means I can't walk very fast. ;) Interesting, huh? You see, when my stim's on, I don't notice the pain as much. So when it's off, the CRPS pain is far more noticeable. To be honest, I don't exactly like charging because I can't move around quickly and the pain's definitely worse. But as I think about this, having to charge is good for me. I have to learn to be patient and "slow down" in this fast-paced world. And, charging the IPG reminds me that I need to charge my other "battery"---spend time in God's Word on a daily basis. Many times, I'd rather do something else, but I also want His Word to be "sweeter than honey to my mouth" (Psalm 119:103). So as I thought about it, how can that desire grow? By sitting at Jesus' feet. From all that has happened, I know God is developing perseverance in me! I still fall short many times, am still a work in progress, but from this trial, by God's grace I now realize this:
"Before this happened, I thought I had a strong relationship with God, but I was only in the meadow near the Cross. After it happened, I went to the foot of the Cross and stayed there." -from the autobiography I Still Believe by Jeremy Camp
"It was good for me to be afflicted so that I might learn Your decrees" (Psalm 119:71).
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