A New Diagnosis

Hey, friends! :)

It's time for a new update!  About two weeks ago, I saw my pain management dr.  It went well.  I learned something new about him. ;)  He saw me reading Wuthering Heights, so he told me he read that when he took Advanced Placement English in the ol' days.  Haha! :D  He's the first guy I know who's read a book like that.  On a more a serious note, I'm to stay at 50 mg of nortriptyline and not increase for now because I've been experiencing something called orthostatic hypotension.  He also referred me to OHSU rheumatology because my hand therapist has been noticing that I have joint hypermobility, so he was wondering if I have a condition called Ehlers-Danlos Syndrome.  So this morning, I saw a rheumatologist, and sure enough, she diagnosed me with EDS which is a genetic disorder of the collagen.  This new diagnosis makes me wonder if that's why I got CRPS in the first place!  I may be having genetic testing done to see what type I have, and I'm to get an echocardiogram to check my heart valves because EDS can affect my inside organs...!  I had some fun after my appointment. :)  After going to OHSU for about two years now, I was finally able to ride the tram that connects the hospital to the Center for Health and Healing!!!  I was able to ride it in both directions because they gave me a patient pass, and it was super fun! :)  The view was breath-taking and made me so thankful for God's beautiful creation. :)

Until next time!

Kerissa

Experiencing Joy- Part 2

"Weeping may tarry for the night,

but joy comes with the morning."

Psalm 30:5

There have been days when I would cry great tears on my pillow at night in the darkness, not wanting anyone to see.  From those past times, I would ask God, "Why is this happening?  Why me?  Why do I have to be the one with an uncommon disease?  Why is CRPS such a difficult condition to treat?"  And deep down inside, I would hear the Lord say to me, "You don't need to know 'why.'  Just trust Me."  It's been almost 2 years since this whole journey started.  And today is a special day.  I'm experiencing the joy that comes with the morning! :)

Today is the six month anniversary of my spinal cord stimulation surgery. :)  It just seems like yesterday when I woke up at 5 am, took a rushed shower with Hibiclens soap, and headed to the Center for Health and Healing with my whole family!  It was a big day for all of us!  At 7:30 sharp, the anesthesiologist pushed me to a packed OR where I saw my three doctors, three anesthesiologists, two St. Jude Medical representatives, and several nurses!  Halfway through the surgery, they woke me up to ask me where I felt the stimulation.  I barely remember that happening. ;)  And a little over 3 hours later, I woke up with a device inside of me and two incisions on my back!  If there were no bending, lifting, and twisting restrictions, I would have RUN out that door with a happy heart! :)

By God's grace, I have come a long way.  Yes, the pain in my feet is still not completely gone, but it's nothing like it used to be, and I'm so thankful.

"You have turned for me my mourning into dancing;

You have loosed my sackcloth

and clothed me with gladness,

that my glory may sing your praise and not be silent.

O Lord my God, I will give thanks to You forever!"

Psalm 30:11-12

God's Providence- Part 1

I just finished writing in my journal tonight and thought I'd share with you my entry because today was my "March 11th Day":

Today marks the one year anniversary of the cortisone shot that I had in the bottom of my right foot.  Those were hard days after I had that procedure.  The unrelenting pain was horrible.  And yet...I see God's providence throughout it all.  If I didn't get that shot, I probably would still be tip-toeing on my right foot, wondering why I still have lingering foot pain 8 months after my hemangioma surgery.  So God brought me to two OHSU dermatologists.  He brought good out of bad---Even though that shot made things worse and not better, I'm so thankful I had it done because the doctors answered the question as to why I had so much foot pain after that surgery.  They diagnosed me with CRPS.  I was no longer left in the dark.  And so began that long journey since then...  But today, I still say with all my heart that God is good all the time! :)  Without Him, I couldn't have survived these long months!  He has carried me through it all!

Stay tuned for Part 2 of this post on Tuesday... ;)

A Faithful God

It's been over two weeks since I last posted because life has been busy!  I'm still trying to get used to this new medication I've been taking.  It makes me sleepy, my mouth gets so dry, and if I get up too fast from sitting, I feel lightheaded.  But, it has been helping the burning pain in my arm which is a praise. :)  So I guess taking the med is a win-lose situation. ;)  I'm still going strong with therapy, and for the past month or so, it's been extra tough---1. because it's painful  2. because I realize just how weak I am strength-wise  3. because my hand therapist and I aren't seeing a whole lot of good progress yet and it's been over 3 months now since the CRPS spread to my hand.  It's been a little discouraging sometimes to see up-front how difficult it is to treat this condition.  I don't like using my left hand because it reminds me how much it hurts.  But, as I've been learning, God gives grace for each day.  He holds me up!  Anyway, I just wanted to share with you something that happened on Valentine's Day that reminded me of God's faithfulness. :)

I had occupational hand therapy and physical therapy on Valentine's Day.  And it wasn't the most easy.  So when I got home, I had a nice surprise that lifted my spirits! :)  A bouquet of pink, white, and red carnations were there---for me. =)  I was one lucky blessed gal!  And no, the flowers (which, by the way, are one of my favorites) weren't from my therapists. ;)  They were from my pastor and his wife. :)  Aren't they the sweetest?  God spoke to me through them that He loves me unconditionally and He is faithful and good.  Not was faithful.  He IS faithful.  And I was reminded once again that I don't need to be afraid about the future or worry at all about progress or issues with strength and pain because...God is faithful.  He is all I need.

"If we are faithless, He remains faithful---for He cannot deny Himself."

2 Timothy 2:13

"Know therefore that the Lord your God is God, the faithful God who keeps covenant and steadfast love with those who love Him and keep His commandments, to a thousand generations..."

Deuteronomy 7:9

"Two steps forward, One step back"

"The steps of a man are established by the Lord, and He delights in his way. When he falls, he will not be hurled headlong, because the Lord is the One holding his hand." ~Psalm 37:23-24

After going through a pretty difficult week last week, one of my friends shared this section of Scripture with me.  Through her, God spoke to my heart.  After reading the passage, I knew right then that it was from the Lord.  Read these two verses again.  Ponder it.  Don't they fill you with peace? :)  As I thought about it deeply, one of the things I learned is that it's a guarantee we'll fall.  Being a follower of Christ doesn't mean I'll always have an easy path to walk on.  Vs. 24 doesn't say, "IF he falls," but "WHEN he falls..."  But here's the good news, my friends: we won't be hurled headlong because the Lord holds our hands. :)  He walks with us.  No matter how many times we fall, we're not on the "ground" for long because God gently pulls us back up on our feet.

Last week was a "two steps forward, one step back" kind of week.  I was doing so well after I had my third stellate ganglion block two weeks ago, but last week, I received some kind of trauma to my arm once again which brought the burning pain back.  This was kind of a blow as you can imagine, and I was put on a new drug for pain relief because of what happened, but vs. 23 gives me comfort and peace. :)  God delights in my way, and He has established my steps which means this is a part of His good plan, even when it may not seem like it.  I trust my Savior. :)  In closing, I want to leave with you this verse from Jesus:

"I have said these things to you, that in me you may have peace.  In the world you will have tribulation.  But take heart; I have overcome the world."

John 16:33

A Praise :)

Wow!  I usually try to post once a week, but last week was just plain busy that I didn't get a chance to.  So, to update everyone on what's going on, here's what happened last week:

On Monday, January 30th, I had my third stellate ganglion block.  When I arrived at the CPC, excitement was running through my veins!  My doctors told me they were going to try a new approach with this block (and the funny thing is, my pain dr. didn't tell me till after the procedure that he never did it this way before on anyone else!  He made this up himself, and I was their guinea pig! ;).  They still used ultrasound and fluoroscopy, but in addition to bupivacaine, my doctor also added the strong anesthetic ketamine to this block, and they went in my neck at a different angle and in a different area.  The needle had to be pushed in very deep...being awake, I kept hearing my doctors tell each other it "needs to go deeper..."  If you looked at me then, my eyes were probably wide open! o_O  To me, it felt like the needle was close to hitting my bone!  And after the procedure was over, the ketamine made me SO sleepy!!  I could barely open my eyes!  But this block was so worth the pain and discomfort, because once I was fully awake, my hand/arm felt SO good! :)  It was that big of a difference!  Praise the Lord!  "I will praise the Lord as long as I live..." (Psalm 146:2)  I was so happy.  I couldn't believe how amazing everything was feeling!  When they discharged me, they gave me a pain diary for me to keep track of how long this block gives me relief.

So that's what happened last week!  I still have physical therapy every other week and occupational hand therapy twice a week.  I'm also studying to become a medical assistant, so that and all my appointments and home exercises keep me busy!  But I'm just so thankful that things look like they're heading in the right direction!  Praise God and share in my joy! :)

"God is in every tomorrow,

Therefore I live for today,

Certain of finding at sunrise,

Guidance and strength for my way;

Power for each moment of weakness,

Hope for each moment of pain, 

Comfort for every sorrow,

Sunshine and joy after rain."

~unknown