Reflections on this past year 2012

It's hard to believe that my first blog post was written one year ago today!  As I reflect on this past year, I thank God for the endurance He provided me and my family to make it through 2012.  Now that this blog has been up and running a full year now, it's easy for me to not fully ponder its title sometimes.  But as this year comes to a close, I'd like to once again think about these three words: Pain with Purpose.

These past months have been filled with things I never would have imagined:

I can't even remember the last time I was able to play my violin,

and I miss it terribly...

It hurts my heart that I had to stop volunteering in the NICU...

I even completed a medical assisting program at the beginning of the year,
and I just don't know if anything will ever come of that...

 It's been almost 2 years since I started physical therapy,

and I still have to do it regularly...

In March I got diagnosed with a rare genetic disease

that is causing so many problems now...

At my doctors' orders,

I've had to visit the ER 4 times in only 2 months,

and I hope I never have to again...

Both my arms have scars from all the IVs I've had...

The list can go on and on...

But thanks be to God, my pain is not without a purpose!! :)  All this is not in vain.  As these lyrics say, "Jesus, You have ordained all things to dwell in Your purpose." (Holding My World by Kristian Stanfill)  Yes, I don't understand a million things, but all I need to do is trust my Savior.  He is soo much wiser than I am.  And how sweet it is to share in Christ's sufferings!

This coming year is full of uncertainty, but I rest in God's sovereignty.  A couple years ago, my sis shared this devotional by Oswald Chambers.  It's so fitting as the new year 2013 comes upon us.  I wanted to share it with you:

". . . it has not yet been revealed what we shall be . . ." —1 John 3:2

"Our natural inclination is to be so precise—trying always to forecast accurately what will happen next—that we look upon uncertainty as a bad thing. We think that we must reach some predetermined goal, but that is not the nature of the spiritual life. The nature of the spiritual life is that we are certain in our uncertainty. Consequently, we do not put down roots. Our common sense says, “Well, what if I were in that circumstance?” We cannot presume to see ourselves in any circumstance in which we have never been.
Certainty is the mark of the commonsense life—gracious uncertainty is the mark of the spiritual life. To be certain of God means that we are uncertain in all our ways, not knowing what tomorrow may bring. This is generally expressed with a sigh of sadness, but it should be an expression of breathless expectation. We are uncertain of the next step, but we are certain of God. As soon as we abandon ourselves to God and do the task He has placed closest to us, He begins to fill our lives with surprises. When we become simply a promoter or a defender of a particular belief, something within us dies. That is not believing God—it is only believing our belief about Him. Jesus said, “. . . unless you . . . become as little children . . .” (Matthew 18:3). The spiritual life is the life of a child. We are not uncertain of God, just uncertain of what He is going to do next. If our certainty is only in our beliefs, we develop a sense of self-righteousness, become overly critical, and are limited by the view that our beliefs are complete and settled. But when we have the right relationship with God, life is full of spontaneous, joyful uncertainty and expectancy. Jesus said, “. . . believe also in Me” (John 14:1), not, “Believe certain things about Me”. Leave everything to Him and it will be gloriously and graciously uncertain how He will come in—but you can be certain that He will come. Remain faithful to Him." (Gracious Uncertainty by Oswald Chambers)

May we all remain faithful to God this new year!

Lots on my plate

I had a great neurology appointment today!  Things are really moving along now. :o)  This is what's on my plate the next few weeks.  She wants me to get another MRI, but this time it will be of my lumbosacral plexus nerves (isn't that fun to say?). ;)  She also ordered another diagnostic test called a somatosensory evoked potentials test.  I don't really know how that works but it involves something with the central nervous system.  Then, on Jan. 10th, I'll be seeing her again for a second EMG study on my weak left leg.  She said my first one done in September was very extensive, but sometimes the results are normal because things may not show up until months later.  Dr. G is also gonna talk with my pain dr. again to talk about him possibly doing a procedure called a blood patch.  Sometimes, spinal taps cause CSF leakage (which then cause headaches), so she wants to see if a blood patch could help my headaches, even though I don't have a classic "post-spinal" headache.  I'm thankful that Dr. G is so thorough!  She's also referring me to a neuro-ophthalmologist at OHSU since I'm getting nystagmus more often which isn't fun at all.  She highly praises her!

I'll be updating in the future!  Don't go away! ;)

Yesterday

Had a great day yesterday!! :)  So many of you have been so supportive and encouraging to me!  Thank you for lifting me up in prayer. <3  That means so much to me.

My pain dr. showed no sign of discouragement yesterday!  He was very cheery and compassionate. :)  We discussed my MRIs and one of the reports that said I have some Tarlov cysts (abnormal sacs of fluid that can cause lots of symptoms) on my sacral spinal cord.  I have no idea how I got those!  He said he's sent a few of his patients who have these to Dallas, Texas where there's a dr. who treats those.  But, he doesn't think that's what's causing my symptoms because mine are small at the moment.  Not sure yet if those enlarge over time...

Do you want to know what cheered me up on Monday? :)  My dad brought home Portland Monthly's January 2013 "Top Doctors" issue.  1,100 doctors chose 416 names---my pain doctor, neurologist, and even my primary care dr. all made the list! :)  That made my day!  I thank God for blessing me with a wonderful medical team!

This will probably be my last post before Christmas Day, so I just wanted to wish all of you a very

a card I made for my pain dr. :)

This is one of my favorite Christmas songs.  It's soo beautiful.

Another Hard Day

Everything is still raw, and I wept great big tears this morning, but I know all of you want to know the results of my MRIs, so here they are.  I don't have the report yet, but in one word, they are "normal."  I don't understand. :'(  I've asked God all morning, "Why??"  I know I should be full of joy, but honestly, I'm so sad because this means I have to keep waiting for an answer.  I'd rather have bad news than still no answer.  I know how to accept bad news, like when I got diagnosed with CRPS and EDS.  But having no answer...that's so hard.  These last 3 months have seemed like 3 years.

I have a follow-up tomorrow with my pain dr. and a follow-up on Dec. 27th with my neurologist.  Here we go again.  In her words, we have to go back to the drawing board.  I was able to have a short phone call with her this morning, and I have to say once again, that I'm so thankful for her.  She encouraged me and told me not to give up hope.  She'll do all she can to help.  She's still glad I had those MRIs cuz she was able to rule out a brain tumor or Multiple Sclerosis.  I hope to talk with her about the neurological side of EDS because I have learned that there have been cases of EDS with ptosis and myoclonus.

If she still can't find out what's going on, the Mayo Clinic, John Hopkins, or someplace like those might be in my near future..  Also, in March, I have a follow-up with my spine surgeon.  This past September, he told me that if I still have the headache in 6 months, then he said he'll chase this more in terms of my cervical instability (which causes neck pain and headaches).

I am sad, but I know this isn't the end of the world.  As this song says, pray that I will take courage, knowing that my Lord and Savior will defend, protect, and uphold me with His righteous right hand.

the day has finally come!

My MRIs are tomorrow!!  I'd appreciate your prayers that the myoclonus (muscle jerking) won't be that severe as I have to lie still for 4 hours.  My neurologist did prescribe me a sedative, but I'm not sure how well it will work..  We're all pretty nervous about the results, including my pain dr. and physical therapist.  It's hard to believe that I'll probably know the results by the time I next see both of them this coming Tuesday.  Whatever happens, I know God is sovereign, and for that, I'm so thankful.  This is the passage that I will be "taking" with me into the MRI tube. :)  What great promises!

"Fear not, for I have redeemed you;

I have called you by name, you are mine.

When you pass through the waters, I will be with you;

and through the rivers, they shall not overwhelm you;

when you walk through fire you shall not be burned,

and the flame shall not consume you.

For I am the Lord your God,

the Holy One of Israel, your Savior."

-Isaiah 43:1a-3a

This past Tuesday, my pain dr. squeezed me in to see him cuz an "egg" has been forming under my spine incision from the swelling.  I have poor wound healing from the EDS, and it was pretty difficult for my pain dr. to remove the anchor and leads from my spine, so he's not surprised that the area is inflamed.  So he wants me to ice it every day.  Praying the incision doesn't bother me too much from lying on my back for so long tomorrow.

My subluxating shoulder isn't doing too well.  My physical therapist ended up having to tape it all over to keep the "head' of my humerus bone from popping out all the time.  I'm to ice this area, also, and later on, my physical medicine and rehabilitation dr. will possibly be ordering an MRI of my shoulder.

Thank you for your prayers!!  My next blog post should contain the results, so stay tuned! ;)

Next Friday

My MRIs got scheduled today!!  Praise God. :)  I will be getting them on Dec. 14th.  Wasn't expecting that it's gonna take 4 hours long from 9-1 PM!!  Not exactly looking forward to 4 hours in the tube...lol.  There won't even be a break!  That will be quite an experience...  Once I know the results, I will be sure to let you know!

Here's a picture that my brother took of my stimulator. :)  Those dangling wires were inserted in my spine, and the generator in my low back.  Isn't it cool?  I'm so happy my pain dr. let me keep it. :)

Explant Surgery 12/4

Surgery is all over!  Thank you, God, for being with me through it all. :)  Although my pain dr. said the post-op pain is nothing like an implant surgery, I'm experiencing the opposite (probably because of my EDS condition and everything else). lol  This pain is so bad, much worse than last year's.  I bled so much during the surgery, the most my pain dr.'s ever seen for this type of surgery.  My incisions kept oozing.  I actually had to change gowns on the operating table because of all the blood!  My IPG and leads were scarred in so well that it was pretty difficult for my pain dr. to remove them.  Thankfully, he was in the end able to remove everything, but he had to do a lot of yanking, tugging, and pulling. ;)  Which is why I am now having so much pain.  Plus, I felt them suture me back up which was quite an experience!  My back is now a hump from the swelling.  And each incision is very dark and red.  It feels like I got shot twice in the back! x[  Oxycodone isn't helping much at all. :(

Anyway, I hope to get those MRIs this week, but that's probably not gonna happen cuz insurance has to authorize it which takes a couple of days.

Before surgery

After surgery.  The first time I saw my spinal cord stimulator outside of my body!  Once I have it all cleaned up and stuff, I'll post a better picture of it. :)

Thank you, everyone, for your prayers!  It's been a tough journey, but God is still so good to me!

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..

Thankful

There are only 2 days till my neurology appointment on the 1st!!!!  So happy. :')  This nausea has been terrible.  Almost every night I can't sleep because of it.  I can't wait to hear what the neurologist thinks about all this.

Please pray for wisdom and discernment for us and the neurologist as she tries to find a diagnosis.  Pray also that things will move quickly once I see her.  My physical therapist thinks my left leg is getting weaker even with therapy. :(  He's dying to know what's going on, as am I. ;)

LOVE this verse from Isaiah.  It's one of my favorites!  "And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail." (Isaiah 58:11)  How comforting that the Lord will always guide me through the next step, whatever that may be!  Even if it's not very good news from the doctor, it's so refreshing to know that my Savior will satisfy my desire and make me strong (including my weak leg). ;)

I will update you once I hear what happens!!

When I am weak, then He is strong..

It's been a super tough week.  I usually only get nausea and dizziness when I lie down, but on Wednesday, I had bad dizziness during the day, and yesterday, I was super nauseated.  Haven't eaten hardly anything.  I should go weigh myself. ;)

Ever since the spinal tap, I've been having nausea, so something must have happened in my spinal cord when the doctor drew out cerebrospinal fluid...  That was over 4 weeks ago!  All this on top of everything else (headaches, drooping eyelid, leg weakness, CRPS pain, EDS problems, etc.) makes me miserable.

I have an appointment with the new neurologist that my pain dr. referred me to on November 1st.  That seems so long from now, but I am grateful she had a cancellation because if she didn't, I wouldn't have been able to see her till December!!  Please pray, tho,' that she'll have an even sooner cancellation before the 1st.

The "head" of my right humerus bone has been popping out, and it hurts a lot now.  My therapist tried pushing it back in, but when he lets go, it pops back out. haha ;)  I now have to try to strengthen the muscles around that area to possibly pull the bone back in.

One of my dear friends shared this quote with me. :)  "This is the blessed life--not anxious to see far in front, nor careful about the next step, nor eager to choose the path, nor weighted with the heavy responsibilities of the future, but quietly following behind the Shepherd, one step at a time.  It is tomorrow that fills men with dread.  God is there already.  All the tomorrows of our life have to pass Him before they can get to us." (Streams in the Desert, Jan. 14)

Today's a new day.  It's sunny out, too! :)  And God never gives more than I can bear.  This is the story of my life:

Little by little, we're moving forward...

Praise God, I heard back from my pain dr. today! :)  You haven't read a new update in a while because I've been waiting, waiting, and waiting myself to see what's next. ;)  Okay, soo, my pain dr. sent a referral letter yesterday to a neurologist outside of the OHSU system, and hopefully, I can see her real soon!  She only takes special cases now, and according to my pain doctor, I'm a special case. ;)

I've been wondering if I have something called Syringomyelia (it's associated with EDS) because you can get a drooping eyelid, headaches, and leg weakness with that.  My pain dr. did say today that SM is possible, but I'd have to get an MRI.  He doesn't want to take out my SCS, tho,' until a neurologist says so.  He does think that "there is a real possibility of an MRI finding pathology that changes treatment."  I'm glad he thinks so! haha :)  You're probably thinking, Why are you glad that he thinks an MRI would show a disease process?  Well, because the previous neurologists I saw weren't helpful at all and implied that these symptoms I'm experiencing are in my head!!  I had a terrible experience with them.  The attending neurologist that I saw last month in the hospital even had a resident psychiatrist with her. x[

So I'm soo grateful that my pain dr. understands and even told me he won't leave me "out in the wilderness." :)

Physical therapy has been tough.  My left leg still isn't strong, and whenever I do a certain exercise, my right leg goes out of my hip socket or something like that (EDS problems once again..).  My therapist told me to stop that exercise, and we'll discuss this dilemma tomorrow when I see him.

Prayer Requests

Off to see the ophthalmologist!  Please pray that he will be able to know what's going on with my eye.  It's starting to look sunken in...horrible feeling.

After that appointment, I have PT. :)  Please also pray that my therapist will be able to help not only my weak leg but also my right shoulder joint.  Every night now, it's been subluxing (partially dislocating)...not a good thing.  I really don't want to add dislocations to my long list... ;)  Oh the joys of EDS!

More Waiting..

I've had to do a lot of waiting lately, so this song really resonates with me. :)  Love it!

I recently read a chapter by Amy Carmichael that I wanted to share with you.  It's called "One Step at a Time," and in it, she expounds on Psalm 119:105:

"Your Word is a lamp to my feet,

and a light for my path."

This is what she said: "We don't walk spiritually by electric light, but by a hand-held lantern.  And a lantern shows only the next step---not several steps ahead."  These are just two short sentences, but they speak volumes to me!  As I still deal with my drooping eyelid, headaches, and leg weakness, I am just reminded that the Lord will guide me each step of the way. :)  True, there are probably many more long steps before me, but I don't need to dwell on those.  Just focusing on the first step is enough.

So as I wait and keep waiting for all "this" to fade away, I rest securely in the Lord!  As the song above says, the Lord is "the keeper of my heart." <3

Update: Not a whole lot to report...unfortunately, the neurologist that I saw on Friday wasn't able to help at all.  She suggested doing another EMG study, but I really don't want to do a second so soon after the first.  I'm scarred for life. ;)  One of the needles they used last time was inserted next to my left eyebrow, and they left it in for what seemed like 40 minutes without numbing the skin at all!!  I'm probably exaggerating, but the area bled quite a lot..  Now waiting to hear if my pain doctor's gonna refer me to another neurologist outside of the OHSU system.  And on Thursday, I officially start physical therapy now that evaluation's over. :)  My pain dr. talked with my therapist, and he thinks I'm "safe to be pushed." ;)

Yesterday's "Appointment"

Yesterday went so well! :)  This is actually kinda funny...I did see my pain dr. yesterday, but it wasn't an "official" appointment like I thought it was going to be.  I learned that if I ever need to see a St. Jude rep, the pain center has to book a room under my doctor's schedule which is why it showed on MyChart that I was gonna have an "appointment" with him. ;)  Anyway, I did see my pain dr. for a few minutes because I wanted him to check the area next to my SCS anchors where I had the spinal tap.  It's been bothering me the past couple days, and I thought it was getting swollen, but my pain dr. thinks it looks fine.  He said the area probably got irritated after the tap because it was done so close to my anchors.  So I stuck a Lidoderm patch over the bump, and it seems to have helped! :)

PT was great!  My therapist did a very long assessment and spent about an hour and ten minutes with me! :)  After my appointment, he said he was gonna try and catch my pain dr. during the lunch hour and speak with him about all that he found.  My leg is soo weak and has atrophied.  I also have decreased sensation on the whole left side of my body.  He said I should hear from him by Friday about what's next.

Tomorrow

Would appreciate your prayers tomorrow morning.  My pain doctor's office called today, and he wants me to come in again tomorrow even tho' I just saw him yesterday!  Praying it's not bad news...  This is kinda unusual for him to want to see me so soon..  I will let you know what happens!

Long day tomorrow.  I'm also seeing one of the St. Jude Medical reps so that he can add a new program to my IPG where the stimulation is stronger in the left foot this time.  Then at 11 AM I have physical therapy. :)

Good night, everyone!

Waiting

Okay, everyone, more waiting to do.. haha ;)  Actually, I'm getting kinda used to it.  Anyway, I saw my pain dr. this morning bright and early!  Aside from the ptosis (drooping eyelid), there's a possibility that the headache and leg weakness could be CRPS-related, but he has to think about that more..

I'm one of 3 CRPS groups:

1. a person who gets CRPS but goes into remission (e.g., they can say they had CRPS)

2. a person who gets CRPS in, say, the foot, and it stays there and doesn't spread at all

3. a person who gets CRPS and it becomes a whole-body spread (e.g., from the right foot, to the other foot, to the left hand, to the arm, to the back, etc.)

Can you guess which group I'm in? ;)

You got it!  I'm group #3!

Soo, there very well could be some direct correlations..  But, as I said, he'll need to think more on that the next few days..

I see the neurologist this Friday, and hopefully I know for sure then whether I have Myasthenia Gravis or not.  Although my electromyogram study which can test for MG was perfectly normal, the Acetylcholine Receptor Antibodies blood test I had done in the hospital came back slightly positive (the lab they sent it to sometimes gives false positive results for some reason), so they redid the test and sent it to the Mayo Clinic in Minnesota.  Isn't that cool?

Oh yes, I start physical therapy on Wednesday so that will be good! :)  I gotta get rid of these crutches!

Crutches, Books, and Cards

It's been two days since I got home from the hospital.  I've mainly only been doing 2 things: reading and sleeping. ;)  I'm also learning how to get accustomed to crutches again.  I can honestly say it's harder the second time around.  When I first started using crutches last year, it was new and exciting.  It's another story now.  Plus, it's more difficult because of the CRPS in my left hand.  I hope I don't have to be on these for long..  But, if so, I know God has a good purpose behind all this. :)

I've been able to read some great books since being home!

1. "Grace: A Child's Intimate Journey Through Cancer and Recovery" by Melinda Marchiano

Though I don't have cancer, I've been able to really relate with her journey and struggles!  Plus, she's a teen like me. :)  And, she was homeschooled!  Isn't that cool?

2."Implosion" by Joel C. Rosenberg

This is his latest non-fiction book, and I highly recommend it!

3. "I Come Quietly to Meet You" by Amy Carmichael

A friend gave me this when I was in the hospital. :)  Thank you so much, Holly! <3  I have been thoroughly enjoying it and am trying to read only one devotional a day to make it last.  That's hard, tho.' ;)

This past week, I received so many cards while I was in the hospital that I decided to paste them all on the wall next to my bed. :)  I'm so thankful for each one of you!  Your cards and loving words so encouraged me, and I will treasure each one of them!  Sorry it's kinda blurry, but here is the finished product:

In addition to all the cards, the two picture frames are from my siblings.  The big one to the left was for my spiritual birthday a while back (in honor of the day I became a Christian in 1998), and the right was from my older brother for when I graduated from high school last year. :)

Hope you enjoyed this post! :)

Happy Day

I'M HOME!!!! :)  It's so good to be back!  It's only been a week since I was last home, but it feels like I've been gone forever!  Coming home from the hospital, I'm now in more pain than when I first arrived there.  Very amused.  Haha! ;)  My right arm is purple and green all over from getting so many IVs and blood draws.  My latest IV infiltrated, so now I kinda have a lumpy and hard patch on my forearm.  Very weird to the touch..  I'm still dealing with that new headache on top of the old one, but I received one last IV drip of magnesium before I left, and I hope it lasts!  My left leg is super weak, and it's so different being back on crutches, especially in the house.

This is Brian and me. :)  Will always treasure this picture!

Since my symptoms are still unresolved, here's the plan: I see my pain dr. this coming Monday (10/1).  We'll discuss the possible removal of my spinal cord stimulator to get that MRI.  Can't wait to know what his thoughts are on that..  I start up physical therapy again (I've been off of it for more than a month!) on the 3rd.  And, on the 5th, I have a follow-up with my neurologist.  So next week will be quite busy!

And in the meantime, I'm gonna get some sleep.  In my own bed. :D  Without any phlebotomists waking me up at 6:30 in the morning.  Without nurses coming in my room at 7:30.  Without seeing doctors soon after that......... ;)

Good night!

7th night

Okay, hopefully tonight is my last night in the hospital.  7 nights and 8 days spent here is enough for me for now... ;)  I feel like it's been too long since I slept in my own sweet bed!  The reason I didn't go home today is because the genetics team hasn't seen me yet.  Been waiting all weekend.  But I think I'll be seeing them for sure tomorrow..  Also, my headaches still get bad if I don't receive IV magnesium and toradol, so we'll be discussing pain management tomorrow for when I get discharged.  Oh yes, my spinal tap results came back completely normal! :)  Thank you, God. What a relief that I don't have Multiple Sclerosis or Myasthenia Gravis!  But at the same time, this is kinda hard because this also means there still isn't an answer for all my symptoms. :(  And I've been waiting so long.  We'll see if the genetics doctors have any answers, and I'll also be discussing with my pain dr. whether I should end up getting my implant removed after all to have the MRI.  He's reluctant to do it, mainly cuz the stimulator is so helpful.  Please pray that the Lord will give me wisdom to know what to do.  It's been really hard deciding as you can imagine because it would be really terrible if I went through the whole explant surgery and MRI only to find out that the results are normal...

Goodnight, everyone!  Hopefully my next post will be typed at home... :)

5th night in the hospital

God has been so good to me the past week.  Every day in the hospital, I've seen evidence of His providence and mercy.  You want to know what made my day yesterday? :)  I found out that Brian, a medical student that has been seeing me everyday for his neurology rotation, loves the Lord! :)  Isn't that so cool?  It's a small world for sure because he goes to Solid Rock like my brother!  And, when we showed a pic of my bro, Brian told us he's met him a couple times!  He also teaches the same little kids' Sunday school as my brother (but a different Sunday)!  Haha! :D

He told me he's praying for me and that he prays for his "patients" every night!  Feeling so blessed by him!  Pictures to come soon once I get home. :)

So Thursday, I had that spinal tap!  And now I'm waiting for results..  Yesterday morning, I woke up with a new and very severe headache in a different area of my brain.  The doctors came to the conclusion that this isn't from the spinal tap, so this now adds to my mysterious case..  The inpatient pain service has been seeing me everyday because of all the pain, and I'm so thankful.  I got hooked up to a magnesium IV drip, and the doctor also has been giving me a daily dose of toradol through the IV.  It has helped immensely!

I was supposed to see the genetics team today, but for some reason, they never showed up..  So I don't know how much longer I'll be at the hospital.

Been praying for a young girl in a room close to me.  She has cystic fibrosis, and basically all day yesterday, she was throwing up continually. :(  I could hear her crying and weeping, and my heart goes out to her.  Could you please pray with me for her?

Staying in the hospital really brings one up close to all the suffering there is in the world.  My heart longs for the day when there will be no more pain and no more tears!  There will be no more genetic diseases like cystic fibrosis and Ehlers-Danlos Syndrome! :)

Longing for Heaven,

Kerissa

...and the adventure continues.

Just wanted to write a quick little update before I head off to bed!  For those of you who don't yet know, I'm back at the hospital because my left leg suddenly became weak on Sunday.  I now have to use crutches.  Add that to my drooping eye and headache!  All my doctors are saying I'm a pretty tricky and mysterious case. ;)  Today I had an EMG done to test the function of my muscles in my face, arm, and leg.  To say it was painful is an understatement.   They had to "shock" my muscles and stick needles into them!  It took about 2 1/2 hours!  Not kidding that it was pure torture.  I didn't get the actual results yet, but they are now thinking I don't have Myasthenia Gravis. :)  I'll probably know for sure tomorrow.  The doctors are now suspecting this to be central nervous system-related (brain and spine).  They're going to get my pain dr. on board with all this because I may have to get a spinal tap and/or my spinal cord stimulator explanted...  I'll keep all of you posted!  So glad I have my own room tonight.  Yesterday I had to share rooms with a lady who had a chronic wound infection!  And when I was trying to fall asleep that night, I assume she had nightmares because she yelled out loud and screamed and cried out and talked in her sleep all the way through the night!  A very startling experience.  Thankful I had my iPod on. ;)

Thankful for medical care :)

So exhausted.  Since Saturday morning, I've gotten like 1 hour of sleep!!  My pain dr. and spine surgeon's resident dr. on call told me I'd better go to the ER again yesterday.  I was in the ER for about 12 hours!!  Didn't get my own room till 3 am in the morning.  I ended up staying the night on the neurology floor at the hospital.  Never knew I'd have to get so many diagnostic tests in only one day!  And to my great surprise, I had to get 4 CT scans, 2 on Friday and 2 on Saturday....!! :(  I also had to get 2 chest x-rays....a urinalysis....3 neuro exams....2 IVs in my right arm....and, if I'm correct (I kinda lost count ;), 13 tubes of blood drawn!!  I think my right arm has just about had it!  I don't think it can take anymore trauma, and I was afraid the CRPS was gonna spread there!  As I read what I just typed, I see that the Lord sustained me through EVERYTHING. :)  I couldn't have made it through the weekend without Him!  The next few weeks are probably gonna be tough ones...  I see the orthopaedics spine surgeon tomorrow, my eye is still drooping, my headache's still there, and recently, my whole left side of my body has become weak and "lazy."  My neurologists are really hoping I don't have something called Myesthenia Gravis where basically my nervous system gets attacked. :(  That's bad.  And I have to wait about 2 weeks till I hear the results of this important blood test I had which will show whether I have MG or not!  Please please pray that this is not what's going on.  And I have to admit, I'm a little nervous and scared.  But I just have to remember that I'm in the Lord's hands.  This weekend has kinda been a blur, but I have to say, if all this didn't happen, I wouldn't have met such amazing people who cared for me in the hospital! :)  Plus, it was super fun seeing my pain dr. 2 days in a row!  In his own words, his second visit today in my room was kinda like a "social visit."  That made my day! :)

Thank you so much again for your prayers!  You are an encouragement to me! :)

A Visit to the ER

Well, friends, I had enough excitement for one day! ;)  This morning, I had to go to the ER at OHSU.  My drooping eye has been getting worse (it's been horrible), so my mom called my spine surgeon's office and spoke with a resident dr. on call.  He said that I'd better get checked out because any facial symptoms (like a drooping eye) usually mean something's going on in the brain.  My ER dr. was super nice! :)  He really wanted to do an MRI, but my mom called St. Jude Medical to ask if getting one is really contraindicated, and they said I can't get one.  If I did, my device would probably malfunction and I'd possibly get an electrical surge through my body from the leads..  So I ended up getting a brain CT scan and a cervical spine CT scan with the lowest amount of radiation possible.  The results show that I didn't have a stroke. :)  That's good news!  So this rules out one thing, and now I just have to wait till Monday when I see the spine surgeon..  I could have a Chiari Malformation in my brain which is common with EDS (but they don't show on CT scans), or the cervical spine instability is causing the drooping eye and headache..  My appointment can't come fast enough!  Thank you so much for your prayers. :)

One year ago today :)

Today is a special day.  One year ago, on September 13, 2011, I had my spinal cord stimulator implant surgery! :)  One of the best days of my life.  I'm so thankful to God that this neurostimulation has helped the CRPS pain in my feet all these past months.  It's been such a blessing!

This is my pain dr. and me. :)  I've known him for one and a half years now!  He's the best!  We've laughed together, joked together, and been through joyous times and tough times.  He has a real compassion for those in pain and tries to do all that he can to help others.  My case has been so crazy and challenging, but he has stuck with me all these months!

4 days till I see the spine surgeon! :)  You want to hear something funny?  Yesterday, I saw a physical medicine and rehabilitation dr.  With him was someone taking notes.  And guess what, that person told me he has EDS, too!!  That really surprised me, but it makes sense because he's short like me!  You're probably thinking, how does that make sense?  Well, I found out that people with EDS are short....no joke. ;)  Pretty interesting!  At least I now have a real reason as to why I'm the shortest in my family. :D

Never Forget...

another update

Hi, guys!

Here's a little update: I'm being referred to see an orthopaedic spine surgeon who has a good knowledge of EDS and CRPS.  Thankfully, I can see him this coming Monday.  My pain doctors aren't sure yet why I've been having a drooping eye and headache until I get some imaging studies done.  An MRI is contraindicated because I have an implant in my back, and my pain dr. doesn't really want to do a CT scan because of its high dose of radiation on a 19-year old.  So we'll be discussing this predicament with the orthopaedics dr. 

My pain dr. doesn't want to do anything for my hand yet until the head/neck problems are more under control.  And I can't have physical therapy at this moment because of the unknown..

I hope things move along quickly cuz this drooping eye is getting bothersome.. ;)

Kerissa

Today

Hey everyone!

I got an appointment with my pain dr. today at 2:15 pm! :)  Thank you, God.  Please pray that my dr. will have wisdom to know what to do.  I started experiencing some new symptoms this morning.  My left eye is kinda drooping... :\  A little nervous about that..

I will let you guys know what happens soon!

Kerissa

"Pain, pain, go away"

Thank you so much, everyone, for your prayers! :)  This past week was really hard.  Let's just say all that happened reminded me once again to fully depend on God and not on man.  I've had to turn to Christ because there was no one else to turn to!  Friends, when all is going "wrong" in your life, turn to the Lord for help.  He does not disappoint!

Last night, everyone went to bed really early, but once again, I couldn't fall asleep.  My hand was hurting, and the base of my skull felt horrible.  So, after trying to get to sleep for about 2 hours, I decided to head downstairs.  I turned on the lamp and read my Bible on our couch in the living room.  I'm going through the book of Job, so chapter 15 was next.  It was about Eliphaz accusing Job and saying that Job doesn't fear God.  Haha, now, that wasn't what I wanted to read for comfort, so I closed my Bible and asked God, "Show me what You want me to read."  The first thing my eye landed on when I opened the pages again was, "The Lord promises peace."  Isn't that awesome? :)  God is good!  It's like He wanted me to remember that in the night.

This is what I read: "Thus says the Lord who made the earth, the Lord who formed it to establish it---the Lord is his name: Call to me and I will answer you, and will tell you great and hidden things that you have not known." (Jeremiah 33:2-3)

I meditated on those two verses before trying to go back to bed.  And, you know what?  I was able to get to sleep that night! :)

This morning, we found out that my pain dr. is not in the clinic today. :(  Not sure why....he could be sick or maybe he teaches on Mondays since he's a professor, too, at the hospital..  Still don't feel good.  And I almost wanted to go to urgent care Friday night, but the dr. on call at the pain center said they would probably just admit me as a patient to the hospital and run some tests since clinics are closed on weekends.  Soo, I didn't want to do that yet..

I'll keep you posted!  Thank you again for your support on this journey!

Having the Blues

Feeling miserable right now, so please forgive me while I vent... ;)

1. My left arm/hand really hurts, and I still haven't heard back from my pain dr.  I have a feeling that he's probably swamped since he just got back from vacation..
2. I have had several canker sores in my mouth from the EDS so I have to stay away from citrus, vinegar, tomatoes, etc., which means I sometimes can't eat what my family eats for meals..
3. My neck, shoulders, and cervical spine are all feeling horrible from the cervical instability.
4. Yesterday, I started getting a severe headache at the base of my skull, and it's still not gone!  Waiting to hear back from my pain dr. about what to do for this..  I called my primary care doctor's office about this, and the nurse mainly told me to go the ED if things don't improve and to see what my pain dr. says.
5. In addition to all this, I'm either dealing with bad hay fever or am starting to fight something...I have a feeling it's allergies.  My eyes water and get dry, my throat itches, my nose runs, and I have some congestion.
6. I sent a message to my pain dr. on Monday.  I didn't hear from him.  So I called the pain center this morning, and the lady told me she'll send a message to him to let him know that I'm waiting for a response, and I still haven't heard from him which is so unusual cuz he always replies quickly!!

So now you can tell why I don't feel good.  Plus, I haven't been sleeping as well because of the CRPS pain and the headache.  They wake me up in the middle of the night!

If you think of it, please pray for me.  Your prayers would be greatly appreciated!  Hopefully my next post will be much happier.. ;)

X-ray Results

I received the full report of my spine x-rays on Friday, so here's the gist of it:

• There is a rudimentary disk space present at C4-C5.  Not sure what that means yet!
• I have anterolisthesis of C2 on C3 and C3 on C4 on flexion which then reduces on extension.  This basically means these vertebrae slip onto each other..  That's not normal.
• And lastly, I have a congenital C4-5 segmentation anomaly!  My C4-5 vertebrae are fused. haha ;)  Never knew that!  The doctors think I've had that since birth..

Right now, I'm still waiting to hear from my pain dr. about what's next regarding all this and the CRPS pain.  Not sure if he got back from his vacation yesterday or today..

This week, I'm supposed to get another blood test.  This time to check my thyroid function.  When my pain dr. used ultrasound for my latest stellate ganglion nerve block, he noticed my thyroid looks bigger.  So he's not sure if this is just from the probe he used or if I possibly have hypothyroidism..  I hope not!  I really don't want another problem added to "my list".. ;)

Please continue to keep Liam's family in your prayers.  I know they would be so grateful.  I can't imagine what they're going through right now.  What a day that will be when there's no more pain and suffering, no more sorrow, no more HLHS that Liam had, and no more CRPS and EDS!!  How amazing that day will be. :)

"And I heard a loud voice from the throne saying, 'Behold, the dwelling place of God is with man.  He will dwell with them, and they will be his people, and God himself will be with them as their God.  He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.'" -Revelation 21:3-4

In Heaven with Jesus

Liam has his wings and Heaven has a new angel, that bright shining star up above, Liam has changed us forever. Fly high baby boy - so many friends there waiting - until we see you again, Grandma Nanci said it best - we're shattered. Your support has been overwhelming and we read many of your postings to him so he knew how much he was loved. We still BeLiEvE in Miracles.  -latest posting on Liam's facebook page

There's a hole in my heart now.  I've been blessed to follow his story for many months, and everyday I would have another reason to look forward to a new day.  Just by seeing his smiling face encouraged me in my trial to keep being strong in the pain. 

Today I've cried tears of joy and of sadness.  Tears of joy because this little 18-month old baby boy doesn't have to suffer anymore.  His body will no longer be swollen from the HLHS.  He can learn how to walk and talk like other 18 month-olds, now that he has a new body in Heaven.  He doesn't have to be confined to a hospital bed any longer.  

Even tho' I don't get to see new pictures and moments of your life anymore, I'm so happy for you, baby Liam. :) You get to have lots of fun with Jesus!  And one day, I get to meet you!

 

 

Update on Liam

For all who are with us on this incredible journey, we cling to your love and prayers. According to doctors, Liam's time on Earth may be nearing a close. Liam is very tired of being confined to that bed and is ready to soar.....and you need wings to be able to do that. Please pray for comfort, peace, and divine wisdom. Whatever the Earthly outcome, we know that God is with him. Please pray for the miracle we call Liam. Roar and soar little cub! -from Liam's facebook page

Little Liam, you are an amazing fighter.  Even tho' I don't know you personally, I've followed your journey for so long now.  My heart is breaking, but we'll be so happy for you whether you stay here on earth or soar to heaven.  We love you.

Prayers for Liam

Hi everyone,

Could you please keep sweet Liam in your prayers?  He needs prayer badly.  He has hypoplastic left heart syndrome, and his story has been heard all across the nation.  His facebook page has over 60,000 "likes."

https://www.facebook.com/pages/I-Love-Liam-Lyon/137992366273067

His family loves Jesus, and they asked for prayer for him 12 hours ago, and we haven't heard since then..

Liam's life continually inspires me as I go through my own little trial.  He is so precious and such a fighter.  Here is a little paragraph about him that I copied from his facebook page:

William Elijah Lyon, affectionately dubbed Liam, was born February 18, 2011 at 3:25am to Whitney and Brody Lyon in Ft. Smith, Arkansas. Although he was about 5 weeks early, he was a perfect size weighing 6 lbs and measuring 19 inches long. But it was quickly apparent there was a serious problem. Thanks to Dr. Seglem and his diagnostic skills - Liam was quickly diagnosed with hypoplastic left heart syndrome. Our boy had a congenital heart defect that is fatal if left untreated. He was transferred that evening by Life Flight to The Children's Hospital at St. Francis in Tulsa, Oklahoma. The doctors spent a week trying to decide the best course of action and decided he needed a transplant instead of the first of three palliative surgeries (Norwood, Glen, Fontan) and he was transferred to Arkansas Children's Hospital in Little Rock, Arkansas. He and his mom were transported by an awesome Angel One team sent by the hospital. He has been there ever since. The doctors here thought he should have the surgeries to try and make his heart work as long as possible - maybe even until he was a teenager! He had the Norwood, but it wasn't working quite right and they had to operate again. It quickly became apparent that the palliative surgery iwas not performing as expected and he was listed status 1A for a heart transplant. He had the Glen, got better for a week, and got much sicker - and then he had a heart transplant. This is his journey and we love him. There are so many people who have followed his story and encouraged us with their prayers. We love you all.

PLEASE pray.  Here's a song that comes to mind when I think of Liam.  It was originally written for a little 5 year old girl with brain cancer.  Her website has received over 14 million visits.  Here's her story: http://www.caringbridge.org/visit/mcraekate

Please watch this video and read the words.  And most of all, please keep Liam in your prayers.

God is near, little Liam.

EDS problems....

My physical therapist called me yesterday with the results of my cervical spine x-rays that I had done last week.  It's not exactly good news....  I don't have the full report yet, but basically I have cervical spine instability from the EDS.  This could be what's causing the bad spine pain I've been having, the dizziness, and the occasional headaches..  I'll be discussing this with my pain doctor next week when he gets back.  Less than 5 days! :)

Back to the Pain

This past Thursday, the CRPS pain came back in full force. :'(  My hand/arm is back to being cold, sensitive, swollen, discolored, and painful!!  Thursday and Friday, I guess you could say I really struggled with this turn of events.  I was a little frustrated.  I didn't injure it, I was so careful not to overuse it, and still, the pain went back to what it was like before the block.  I didn't understand.  But then, this weekend, God spoke to my heart and gave me peace that He is still in control in the midst of this flare-up.  I still have a lot of questions, but I realize once again that some of those might not be answered in this life.  All I can do is surrender this to Jesus and believe with my heart that He has a good purpose behind the pain.  He's not finished with me yet.  And in the meantime, as I learned from a Philippians sermon at Solid Rock today, I just gotta "keep going" and forget what lies behind (all the pain, all the disappointments, all the frustration).  I want to "press on toward the goal for the prize of the upward call of God in Christ Jesus." (Philippians 3:14)

So now, I'm waiting for August to end so that I can tell my pain dr.  He's on vacation, so I have to wait 9 more days!  I'm really praying he'll at least consider the ketamine infusions.  I've heard so many good stories of its success!  Part of the reason he may not want to do them is because they're inpatient, so it would be quite spendy.  But, we're almost at our catastrophic insurance protection which means that once we reach that point, we won't have to pay any more medical care for the rest of the year! :)  So if he suggests the ketamine infusions, I'll be game to try it!

My pain meds that I'm taking right now aren't enough for the pain, and I already had to double one of the doses after a flare-up in July.  And, I really don't want to take anymore pills. ;)  I'm going through the green-and-blue "candy" and the white-and-orange ones way too fast!

On Friday, when I arrived at the center for rehab, I actually didn't have an official PT appointment.  After assessing my neck, spine, and arms, my therapist talked to one of my pain dr.'s colleagues and asked her to order two cervical spine x-rays.  I've been getting bad cervical spine pain, and he's not sure if it's CRPS pain or something else going on because, when I side-bend my neck to the left or right, I can't lift my arms and it hurts.  So I had those x-rays done right away, and now I'm waiting once more for the results....  I should hear back this week.

Thanks for checking in! :)  I officially start volunteering in the NICU on Tuesday.  Really hoping the pain won't get in the way!

Excited :)

Yesterday, I got trained to volunteer in the neonatal intensive care unit at St. Vincent's. :)  It went great!  There definitely was a lot to learn!

• We were taught how to use our ID badges to get past restricted doors. ;)
• We learned how to put together infant oral care bags that doctors use every day.  I have to stuff in 16 tiny syringes, 4 strips of labeled stickers, and 6 plastic cups in each!
• We were taught how to keep rooms fully stocked with things ranging from gloves, gowns, and bottles, to baby clothes, blankets, and lots more!
• We learned how to make labels for baby bottles and print different things to stuff in folders for new parents.

The NICU is currently on two floors, so I'm gonna get tons of exercise going back and forth! ;)  In addition to all the above, sometime in late October, I get to be trained as a cuddler!!  That's gonna be an awesome 20th birthday present. ;)  So excited!  They need lots of cuddlers cuz so many of the babies have to be there for many months.  One baby girl has been there for over 70 days now!  There can be 50+ babies in the unit when at capacity.  They melt my heart.  It's hard to believe I was once in an NICU myself when I was born!

I'm glad these Tuesday shifts will only be 4 hours long cuz at the end of training yesterday, my feet were really hurting from the CRPS!  But it's all worth it. :)  This will be a great experience!

I know many of you are probably wondering how my left hand/arm is doing since the nerve block last week.  Well, to be honest, it's kinda hard to say...  Thankfully the pain is still a lot lower than before the block, but the side of my palm is a little swollen again, and my fingers have been getting stiff at night..  But, I'm not gonna freak out. ;)  We'll see what my pain dr. says next month at my appointment.  He has the rest of August off, and I'm so glad that he can have this short break.  I realize more and more how much he sacrifices to help his patients like me.

In the meantime, I'm enjoying this beautiful weather! :)  One of the elders from my church came over this afternoon, and he and I each recited Philippians 1-2 and James 1-2!  My brain is fried now.

All About Me in ABCs

Today is a blog-for-fun kind of day. :)  I'm still healing up and resting from my stellate ganglion block, so I haven't been able to do much still.  So anyways, I got this idea from another blog that I follow.  I'm tweaking it a little, but I can tell this is gonna be fun!  Enjoy! ;)

A-Age: 19- my 20th birthday is in less than 2 months!  Crazy! 
B-Bed size: Twin- My feet don't even touch the end of the bed!  Haha! :D

C-Chore you hate: Cleaning the bathroom- But my awesome sis has kindly taken over since I haven't been able to do things like that since around 2010 due to being diagnosed with CRPS
D-Favorite dog: a husky
E-Easiest thing to do everyday: smile :)
F-Favorite color: It used to be pink when I was a little girl, but I have to say I now love green and purple!
G-Gold or silver: I want a silver wedding ring. :)
H-Height: I am only 4'10"ish.  I always wanted to reach 5 feet, but that unfortunately never happened!
I-Instruments you play: violin and piano- My sis taught me violin when I was 10, so I played for about 9 years.  It's kinda up in the air now as this left arm and hand pain keeps staying with me!  Thankfully, I can play the piano. :)  I taught myself when I was 10ish.
J-Job title: No job as of now.  But on the 28th of August, I will be starting to volunteer in Providence St. Vincent's NICU!!  So stoked! :)
K-kids: no kids now- I hope to have 6 or more when I get married! ;)
L-Live: In Oregon.  I have a love/hate relationship with it. ;)
M-Milk: I love milk.  The end.
N- Nicknames: I have no nicknames, but my sis always said I loved the name "Keri" (pronounced "curry") when I was a little girl.  I guess I thought that was funny or something!
O-Overnight hospital stay: I've never had an overnight hospital stay, but I have had 3 surgeries and too many procedures to count!
P-Pet peeves: I have a pet peeve with the food pantry in our kitchen. ;)  Every week, it gets cluttered and messy, so I always fix it up and organize it..its neatness never lasts tho.'
Q-Quote from a movie: Frodo: "I wish none of this had happened." Gandalf: "So do all who live to see such times.  But that is not for them to decide.  All we have to decide is what to do with the time that is given to us.  There are other forces at work in this world, Frodo, besides the will of evil." -from the LOTR movie
R-Right/lefty: Righty
S- Siblings: I have an older brother and sister and a younger brother.  They're the best!
T-Time you wake up: I have to admit I've been waking up at 9-10 AM lately...but I have an excuse. ;)  I take 2 nerve pain drugs that cause drowsiness, and before getting this stellate ganglion block, I never slept well cuz of the pain.
U-Umbrella: I had my own pink umbrella when I was little.  It had green trimming!
V-Veggies you dislike: chard, olives, and brussel sprouts, to name a few
W-What makes me sad: babies/children with congenital heart defects or cancer
X-X-rays you've had: lots of foot x-rays, hand x-rays, and spinal x-rays

Y-Yuck: spiders, whether big or little!
Z-Zoo animal: baby elephant