SCS explant surgery

Well, it's official.  My spinal cord stimulator explant surgery is scheduled for Dec. 4th!!  Have to get there at 7 in the morning, and surgery's at 9 AM.  Today I had a pre-op phone appointment, and tomorrow I have PT.  I hope my physical therapist is prepared for all this sad news I have to tell him...  Surgery is in 6 days, and honestly, I'm so sad.  Last year, on September 13th, having a spinal cord stimulator implanted was the happiest day of my life.  It never entered my mind that a year later I would have to have my SCS removed.  I never thought that a year later I'd have to go through the worst headaches of my life.  I never imagined that a year later I'd have to soon get MRIs on my brain and spinal cord.  As I think about all this, I'm just soo thankful I can't know the future.  If I knew last year that all this would happen, I don't think I could have survived all these turn of events.  So I'm so grateful that only God knows the future.  He is in control.  He's holding my world in His hands.

I'd really appreciate your prayers on Tuesday!  I love you guys.  Maybe I'll post some pics.. ;)

Love this song by Kristian Stanfill.  It gives me peace. :)

 

And this is Your world, You made it

And all of creation is breathing because You sustain it

Jesus, by Your powerful word, You spoke out the earth and the heavens

So I will not worry or fret

My God is the God who will never forget

All of His goodness and all of His promises

He's holding my world in His hands

And these are your days, You give them

All for your fame and all for Your glorious kingdom

Jesus, You have ordained all things to dwell in Your purpose

[ Lyrics from: http://www.lyricsty.com/kristian-stanfill-holding-my-world-lyrics.html ]

So I will not worry or fret

My God is the God who will never forget

All of His goodness and all of His promises

He's holding my world in His hands

And I am Your child, Beloved

And all of my days my future is laid in Your promise

Jesus, to the end of the age, I am not alone or forgotten

So I will not worry or fret

My God is the God who will never forget

All of His goodness and all of His promises

He's holding my world

So I will not worry or fret

My God is the God who will never forget

All of His goodness and all of His promises

He's holding my world in His hands

Happy

Yayyyyy!!!  Last night, I emailed my pain dr. and asked him if I could at least know what's gonna happen before Thanksgiving. ;)  I just received a reply from him!  He's the best. :)  He told me he did speak with my neurologist today, and after discussing options together, they both agree that taking the SCS out would allow her to best sort out my issues with testing.  He spoke with a surgery coordinator, and he said he can likely take out my SCS on December 4th.  *gulp*  I have a lot to ask him cuz I'm gonna miss my stimulator so much.  "Can I have another one implanted later?"  "Can he just remove the IPG and leave the leads in?"  "What happens if the pain in my feet gets severe again?"  All I can say is, God is so faithful, and He will carry me through this next step.

Last week, my pain dr. discussed the explant surgery with me.  I'm gonna have 2 more incisions on my back..  That will be 4 total so far!!  Thankfully, he said the post-op pain is nothing like an implant surgery. :)

Thank you so much for your prayers and love!!  Happy Thanksgiving, everyone!!! :)

Still Waiting

Waiting....Waiting....Waiting.  That's what I've been doing. ;)  Which is why you haven't read an update in a while.  My neurologist and pain dr. are having a bit of a difficulty connecting.  When my neurologist is free, my pain dr. is not, and vice versa.  But I'm praying today's the day I hear something..  I have a feeling the receptionists at both clinics are getting kinda tired of me and my mom calling every day. ;) 

2 nights ago, I went to bed quite early cuz I was tired, but I didn't fall asleep till after 5 in the morning...! :(  My headache was soo bad, and I realized that I completely forgot to take my nightly drugs for the CRPS pain so I was probably having withdrawal..  Anyway, let's just say last night's sleep was very sweet!  Thanksgiving is 2 days away, and this is what I'm thankful for: good sleep. :)  I'm also thankful that the nausea hasn't been as bad.  The morphine from the ER finally passed through my system, and I've been staying away from oxycodone and pain meds like that because they only make me feel worse.  Soo, I've been able to eat more, but things still aren't back to "normal."  I'll be sure to let you know when I hear from either doctor!!

I'm excited for Thanksgiving. :)  I really do have a lot to be thankful for.  Here's a little list I made on the top of my head in no particular order:

I'm so grateful for...

1. my doctors, even if things are taking a long time to start moving.  I'm very blessed to have several "Top Doctors" as rated by the Pacific Northwest. :)  Here's a fun fact: my pain doctor, neurologist, spine doctor, and physical medicine and rehabilitation doctor all made the Portland Monthly's "Best Doctors" issues. :)
2. my physical therapist who is a great encourager
3. my iPod when I can't sleep at night
4. my dear friends who visit me all the time and send me the sweetest facebook messages and emails!
5. my amazing family who has done more than words can say for me.  I LOVE YOU SO MUCH!
6. my wonderful church family.  I seriously wouldn't want to be anywhere else!
7. my Savior Jesus Christ who above all understands what I'm going through because He Himself suffered far greater for me
8. ice packs for my head
9. Christmas music.  It makes me happy. :)
10. yams and sweet potatoes (inside joke)  Uncle Gary, I'm looking forward to watching you eat some!!  We had a deal! ;)

My Heart is Full :)

Cici, this post is for you and all your roommates (Sarah, Cara, Kate, Allie, Greta, Arcy, Sree, Meredith, Amber, Micaela, Chelsea, Maggie, Sheri, and Anne-we totally need to meet sometime!) at Welmers Cottage at Hope College in Michigan!!!!  I couldn't find you on facebook, Cici, so I'm dedicating this post to you and your dear friends. :)

I seriously cannot tell you enough how much joy your "box of awesome" gave me this afternoon!!!  Here's proof that I smiled a ton:

Please forgive my drooping eyelid. ;)  Just know that you made me so happy and brought a smile to my face!!

 All the goodies you gave me are my favorites!!!  And I've been treasuring each gift!  I'm so overwhelmed by your thoughtfulness and love.  I'll never forget this for years to come!!

*BIG HUGS TO ALL OF YOU*

Also, to my Southwest Hills family---Pastor Rick, Mrs. E, and everyone else---If you read this, I just wanted to thank you for the card and beautiful roses you blessed me with today.  The flowers are now sitting in our living room, being enjoyed by all in my family and in my direct view from where I sit everyday. :)

Aren't these SOOOO pretty??? :)

So Blessed

Thank you so much, everyone, for your constant prayers and love!!!  I seriously don't know what I'd do without you guys. <3  Reading all your facebook posts and messages and your comments on my blog is super encouraging to me and I thank God for each of you.

My pain dr. spent a lot of time with me this morning.  So thankful for him.  He prescribed me a sedative so that I can sleep better, and he already put the order in to have my stimulator removed.  BUT, he's not gonna do it until he can get a hold of my neurologist.    He's really trying to find an alternative way to come to a diagnosis because if he removes my SCS, I may never be able to have another one implanted because of the possibility that insurance won't cover it.  Even if they did, a second stimulator may not work as well because of scar tissue in my spine.  So I really understand why he doesn't want to remove it.

In addition to everything else, I'm also dealing with something called myoclonus.  When I lie still or don't move, random muscles of my body jerk.  I haven't really eaten since Monday morning.  I'm now 82 lbs., so it's probably time to pull out my size 10 girls' jeans that my mom and dad bought for me last week.  I'm very amused about that cuz I'm 20 years old.. ;)

Tyring to be patient in suffering..

My pain dr. squeezed me in to see him tomorrow morning at 7:15.  Please pray like never before.  I admit I'm scared.  Even if he agrees to take my SCS out, I don't know how I can go through a surgery like that with the way I'm feeling now.  The implant surgery took over 3 hours, and an explant is even more drastic cuz of scar tissue.  For those who don't know, my neurologist told me to go to the ER last night.  The doctors gave me IV toradol, oxycodone, and even IV morphine.  None of it touched my headache.  My teeth have been chattering non-stop from the pain and nausea.  And even worse, when the nurse put my IV in, CRPS spread to my right arm.  I'm devastated.  In one second, my hand turned purple, swollen, cold.  And now it's been burning so bad.  Pray that through all of this, my Lord and Savior will be glorified.

"I want to let go of what I can't change
'Cause I can't wrap my mind around Your ways
I've got more questions than I have answers these days
Please don't let my suffering go to waste.."

My favorite song ever

"Shall we receive good from God, and shall we not receive evil?"  Job 2:10

"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'  Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities.  For when I am weak, then I am strong."  2 Corinthians 12:9-10

Asking for Prayer

I'd so appreciate your prayers.  Yesterday afternoon, I started getting uncontrollable eye movements (called nystagmus). :'(  It's like I'm having an earthquake in my head, so I've been SO nauseous to the point that I sometimes feel like I have to throw up.  Everytime I look left or right, it literally feels like my eyeballs are oscillating.  Worst experience ever.  I wish I could cut off my head!  And I don't usually say this, but I feel like crap (sorry, guys).  That's how bad I feel. x[  Pray that my pain dr. gets a chance to speak with my neurologist today and that he receives my message that I sent him.  I told him I'd like my stimulator taken out before Thanksgiving if at all possible..  Pray that he understands.  I've never ever felt this bad before, and that's saying a lot..

phone call with my neurologist :)

Praise God!!  My neurologist just called me this evening. :)  *sigh of relief*  There was some sort of mix-up or something with my medical records, so she wasn't able to look everything over until today.  First, she told me that my EMG study was thorough enough so that I don't have to have a second one done.  *another sigh of relief* ;)  She wants me to get some more blood work done to check vitamin levels and something called lactic acid which can cause muscle disorders.  In addition to that, she said all my symptoms are extensive enough to the point that I should have MRIs done on my brain and spinal cord.  So she just put a call in to my pain dr. to speak with him about removing my spinal cord stimulator, but unfortunately he wasn't in the office.  She'll be out of town this Tuesday and will be gone for a week, but she hopes to speak with him on Monday...  Please pray that both my doctors will be able to be in touch that day.  It's getting harder and harder to wait patiently because my headaches have been so bad..  Hopefully I will have another update soon on Monday! :)

Here's a fun fact:  I was looking over my spinal tap report, and I read that the needle to draw my cerebrospinal fluid out was 3 1/2 inches long. haha ;)  Good thing I didn't see the length during the procedure! :D  The dr. also drew out 11 teaspoons of fluid which is about 4 tubes!!!

Thoughts

Just wanted to share this blog post by a family who epitomizes true courage and trust in our Lord and Savior.  They have 4 little daughters, and their two youngest were diagnosed with the same rare form of Mitochondrial Disease.  Though they look like they're doing so well physically, Addison and Audrina may not have much time left on this earth because of the nature of the disease.

This is what the parents wrote this morning:

Emotions are running high, and I would be lying if I told you my family did not feel very strongly about the candidate we voted for in this presidential election. We had some unique considerations because of the girls health problems, and reflected those in the research we did on the issues.

I'm not here to tell you who we voted for, or whether we are happy or sad at the outcome. I want to remind you all, during this tumultuous time in our nation - a time when we are almost unanimously divided - that the election is not the ultimate factor in our futures. Just as our doctors do not have the final say on our kids prognosis, our president does not have the final say on our country's path.

We are rejoicing tonight - that our Lord and Savior has a plan for His people. The voice of reason in my head is that the next 4 years are most importantly governed by God. Your president may not have your best interest in mind, but God does. He knows the issues that are important to your family. He will provide a way for your life. Do not be caught up in the election.

Would your president lay down his life for YOU alone?

2 Chronicles 7:14
"If my people, which are called by my name, shall humble themselves, and pray, and seek my face, and turn from their wicked ways; then will I hear from heaven, and will forgive their sin, and will heal their land."

All our love and prayers for our country to be healed.
Adam & Kim

Please keep this precious family in your prayers.

You might be thinking, Why are you sharing this, Kerissa?  Well, every day, stories like these remind me that life is so fragile.  I'm reminded of this in my own life, also.  The headaches remind me, the leg weakness, the CRPS pain, my subluxating shoulder, etc.  In Adam and Kim's words, I'm just so thankful that the election (as well as things like disease) is not the ultimate factor in our futures.  I'm thankful that all things are most importantly governed by God.  And I'm so thankful for Jesus Christ who laid down His life for all of us to conquer sin and death!  The earth is not my home.  Heaven is. :)  And I can't wait for the time when I will one day be able to meet this amazing family there!

update

My appointment with my new neurologist went really well. :)  She's super nice and funny, too.  She was very amused at my hypermobile joints.  And, she couldn't get over that I'm 84 lbs, so she went to go have me weighed. haha ;)

Anyway, on to business.  Have to do a little more waiting...  She never received my EMG results or all the lab work that I had done in the hospital, so she wants to look those over first and decide if I need more blood work to rule out mitochondrial or inflammatory diseases.  I hope I don't cuz my bruises from the IVs and all the blood draws I had done in September just now finally disappeared..  And, I never fully recovered after being jabbed with needles every day.... jk. ;)  If she doesn't think more blood work is necessary, then she'll talk with my pain dr. because she wants me to get some MRIs of my brain and spine.

I should hear what's next real soon! :)

On Monday, I have another appointment with one of my orthopaedics drs. because my subluxating shoulder is getting worse.  It hurts so bad, and something inside feels really stretched or torn..