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

What a day!

Since my voice is gone (I'll explain why in a minute ;), I decided to blog now cuz I have nothing else to do...just kidding.  But really, I pretty much can't eat or drink, and I'm so hungry since I haven't eaten since yesterday..  Anyway, here's the story of my day:

Once I arrived at the pain center, I got checked in and was able to see my favorite nurses. :)  They're the sweetest!  I also met a new fellow.  He's so kind and compassionate.  It's hard to believe that this is the third set of fellows that I've seen so far!!  When my pain dr. came in, I asked him, "Are we ready?" ;)  Procedures are nerve-wrecking.  He laughed and told me he's ready emotionally!  Once I was on the procedure table in the "operating room," my docs used ultrasound to locate all the structures and arteries for safety reasons and to try to find a good spot to block the pain.  But they had to resort to fluoroscopy only because ultrasound wasn't giving them a good view of where to inject the medications..  Saying it was painful is an understatement.  And choosing to stay awake probably didn't help..  They had to really dig their fingers deep into my neck to feel for the vertebrae. :P  It was hard to breathe cuz they were pushing so hard.  I ended up having to get "poked" twice because the first area didn't work to inject the medications...this meant they had to dig even more!  Despite their painful probing, I'm so thankful for them.  They were able to keep a light and fun attitude in the midst of a challenging procedure.  They called me a "champ" and a "trouper," and they kept telling me I'm doing great.  My nurse held my hand and stroked it, haha. :)  She's the best.  The procedure was pretty long, so once they pulled the needle back out and sat me up, I was so relieved!  Soon after it was finished, I moved my hand and looked at it.  The swelling reduced, and the color was better! :)  Even the pain went from a 9 to a 1-3.  Everyone was so happy.  Within minutes, my left eye started drooping which is called Horner's Syndrome.  Thankfully, that's only temporary because it's a "good" side effect of the block. ;)  When I went down to the lobby, I suddenly lost my voice which is also another good side effect because it tells my doctors that they injected in the right place.  All through physical therapy, I had to whisper to my therapist, and he kinda had to do all the talking, haha ;)  It was pretty humorous.  After PT, I ran into my hand therapist.  It was so nice to catch up a little bit.  He jokingly told me I'm going to waste away since I haven't been able to eat. ;)  I also can't cough or yawn cuz my nerves are temporarily not able to control my vocal cords, trachea, etc.

So here I am, still not able to talk or eat well.  If I try to swallow, I sometimes choke.  My neck hurts really bad, too.  I'm trying to wait patiently for all this to pass!  I'm to keep a pain diary and record my pain level every hour for today, then once every day until I fill out the whole page.  I'll be seeing my pain dr. in a few weeks for follow-up..  I'm not sure what's ahead...these blocks are temporary, but I really pray the severe pain stays away for at least a month!

Thank you for your prayers! :)  God is good all the time!  I'm so blessed.

Safe in the Arms of the Father

Well, it looks like I am after all having that stellate ganglion nerve block this Wednesday at 11:30!!!  I'm actually looking forward to it now cuz my left hand isn't doing well at all in this heat we've been having.  My hand swells up, so the swelling pushes and presses on my nerves which hurts so bad!  I'd really appreciate your prayers for this block.  Even with ultrasound and fluoroscopy, some past ones I've had weren't successful at all.  Pray that my pain dr. will be able to easily locate the stellate ganglion nerve bundle and not accidentally hit with the long needle any arteries and structures in my neck..  I'm a pretty challenging case cuz I'm small...  But I'm thankful I can head into the procedure room with Jesus holding me. :)

"In these hard times, 

It's not in what you hold onto.

It's in the One who's holding you tonight."

-"Holding You" by Matt Hammitt

Longing..

Yesterday was a longgg day.  So tired now.  We arrived at the Center for Health and Healing at 7:15 in the morning and didn't get home till after 3:00.  Almost 8 hours spent there!

Anyway, here's an update on my left hand/arm:

Things are about the same.  It's still swollen, stiff, and discolored.  Heat makes my hand swell up to the point that I can't "make a fist."  Cold air (like wind and A/C) "burns" my skin.

My pain dr. set up another treatment plan for me:

I'm to try mirror therapy again and start up physical therapy once more.  I couldn't even stay away from rehab for 3 weeks. ;)  I wasn't expecting mirror therapy to be painful, but it was.  I looked in a mirror at my "left" hand, and my sis brushed her hand all over my right hand/forearm to make it appear as if she's touching my left hand.  The weirdest thing happened- even though my left hand wasn't being touched at all, the burning pain increased and I couldn't stand more than a minute of that at a time!  At PT, I laid on the table, and my therapist mainly lightly brushed his hands all over my left hand/arm.  It was torture.

Lastly, my pain dr. is gonna try another stellate ganglion block on me...  He thinks that's the best thing to do now since the CRPS is so severe at this point.  I guess I do want another block, despite seeing with my very eyes a LONG needle being driven into the front of my neck at full speed...jk. ;)  I just want pain relief!  My pain dr.'s speaking at a pain symposium in Wisconsin till the end of this week and he's booked up all next week in clinic, but he worked things out on the schedule so that I can tentatively have the procedure on the 15th! :)  So thankful for him.  If the block doesn't help, he may think about having me go through ketamine infusions...  They are only done inpatient, though, in the hospital, so he's not sure yet how he could make them outpatient..

I will let you guys know if I have the block for sure next week!  I will only be going through with it if there is no improvement with therapy alone.

Thank you for your prayers!  God has faithfully carried me through each day! :)

Striving to Endure

This has been one of the toughest weeks pain-wise so far.  The wind even makes the burning pain worse, so I don't like moving around!  My hand/arm is sensitive, ice-cold, purple, and swollen.  It's been hard focusing cuz the pain has been so bad.  I have to make myself do therapy.  God has been giving His grace for each day, but it is hard waking up in the morning in pain and going to bed in pain.  I see my pain dr. on the 7th, and I'm so thankful my appointment's just around the corner.

Today, during my Bible reading, I turned to some of my favorites passages of Scripture that give me hope and encouragement.  I hope they do the same to you!

"But for you who fear my name, the sun of righteousness shall rise with healing in its wings." -Malachi 4:2

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction...If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer.  Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort." -2 Corinthians 1:3-7

"Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted...It is for discipline that you have to endure.  God is treating you as sons.  For what son is there whom his father does not discipline?  ...But he disciplines us for our good, that we may share his holiness." -Hebrews 12:3, 7, 10

Looking to my Savior for strength!  I will update again, soon!

Kerissa