Jul 8, 2012

July 8, 2010, the day I had the foot surgery to remove a lymphangioma, changed my life.  It’s hard to believe it’s already been 2 years!

Since that date, I have:

-seen so many specialists (it’d take a long time to count all of them on my fingers!)
-had 1 cortisone shot in my hypertrophic scar on the bottom of my right foot
-been diagnosed with CRPS in my right foot in March
-went through 1 lumbar sympathetic block procedure in April
(CRPS spread to my left foot in April ’11)
-had various diagnostic tests (an MRI, triple-phase bone scan, x-rays, nerve conduction study, heart echocardiogram, etc.)
-went through a 2-day spinal cord stimulator trial in August
-had a spinal cord stimulator implant surgery in September
(CRPS spread to my left arm in November)
-seen many pain psychologists, physical therapists, and occupational hand therapists
-had 4 stellate ganglion blocks in my neck from December to February
-taken Vicodin, Gabapentin, Pregabalin, Oxycodone, Tramadol, Nortriptyline, and Cymbalta
-been diagnosed with a rare genetic connective tissue disease called Ehlers-Danlos Syndrome
(CRPS spread to my upper back in April)

I know now all this was God’s purpose for my life all along.  Before I was created in my Mom’s womb, He knew that I would have CRPS and EDS.

“For you formed my inward parts; you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you, when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
How precious to me are your thoughts, O God!  How vast is the sum of them!
~Psalm 139:13-17

Both CRPS and EDS have stretched me and changed me like no other way!  Sometimes, I try to remember what it was like before the first symptoms came on, but it’s hard to because it seems like I’ve had these conditions all my life.  But I have learned so much these past two years, and it has been very eye-opening.  As time goes on, I’m learning that these two conditions are gifts from the Lord.

Right now, I’ve just been taking each day as it comes.  I was able to see my pain dr. on Thursday, and the plan is to increase the Cymbalta for now and continue physical therapy.  My dr. stressed that I need to regularly take vitamin D since low D can cause pain.  We talked about CRPS flare-ups and the possibility that they will be with me in the future..  I’m glad I saw my pain team because I was also able to say goodbye to one of the pain fellows who left for Massachusetts on Friday. 🙂  He was my favorite of the three fellows!  He’ll be missed by all.  Every time I saw him, he would tell me, “It’s always nice to see you, but it’s not nice that you’re here.” 😉  The next 3 pain fellows will be the third set I’ve seen!

I’m continually finding that CRPS and EDS go together.  Because my connective tissue is abnormal, my nerves aren’t well protected and cushioned, hence the ongoing CRPS flare-ups.  Lately, my joints all over have been popping and cracking from the EDS..  One of my fellow EDSers with CRPS will be having shoulder surgery in August and two possible hip surgeries.  She’s been dislocating everyday which makes me wonder if that will one day be me!  But I do have peace about the future and I know God is faithful.  He will carry me through whatever happens.

About 2-3 weeks ago, God showed me His faithfulness once again when I found out that I have been granted an award of $1,500 from the Patient Advocate Foundation’s Co-Pay Relief pain fund. 🙂  Thank you, Lord!  I’m still thanking Him because this has been such a blessing.  From June 2011-June 2013, all my medication co-pays will be paid for up to $1500!  So happy.  What a great gift to remember this day.

P.S.  In honor of this anniversary, it was time to give my old blog template a face-lift! 😉  Hope you like it! 🙂

Post written byKerissa

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