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!