Feeling refreshed!

Just got back from a wonderful vacation with my family in Redmond, OR. :)  It was beautiful there!  Despite three episodes which I'll explain in a minute, the trip was so refreshing, and I loved spending lots of time with my family and soaking in the sunshine!  We watched movies together, played several wild card games, went on bike rides and walks, enjoyed time in the pool, tackled a challenging putting course, and the list goes on!  It was a very blessed vacation.

Here are a few pics that my brother took of me :)

 my "deer" friend ;)

The morning we left for Redmond, I squeezed in a last PT session.  As of that appointment, my therapist is now trying to have me not see him for at least one month.  We'll see how this experiment goes.. ;)  I really wanted to have no problems whatsoever with CRPS, EDS, and POTS on the trip, but...that was not to be.

One afternoon, my siblings and I went for a bike ride.  I was doing quite well for a time, until we ended up at this huge (and I mean HUGE) and steep hill.  I got off my bike to try walking up it, but suddenly I couldn't even do that anymore.  My legs wouldn't move, and I developed a terrible, pounding pain in the center of my brain.  I quickly sat down on the pavement to rest, and I started getting dizzy.  I really thought I was going to black out from the POTS!  I definitely didn't want to go to the ED.  Thankfully, I was able to make it back to the condo but it was kind of a blur.  For a long time, the pain in my head didn't go away.  It felt like a vein in my head was going to rupture which can be a symptom of EDS.  So grateful to the Lord that that didn't happen!

Another day, I was fixing my bed, and my left middle finger gave way and buckled under.  Now it really hurts at the first joint.  I'm not sure if this is EDS, CRPS, or both!  My fingers get stiff and swollen, and it occasionally becomes hard to "make a fist." :(

And then, another day, I was playing racquet ball with my dad and two of my siblings.  I enjoyed it immensely!  But then the palm of my left hand got scraped by a sharp plastic piece sticking out from the edge of the racquet!  Now it's a little swollen.  Right now, I'm waiting to hear back from my hand therapist about both of these "injuries"..

So I'm really glad to be home.  I've had enough adventures for a time.. ;)

2 years ago today...

July 8, 2010, the day I had the foot surgery to remove a lymphangioma, changed my life.  It's hard to believe it's already been 2 years!

Since that date, I have:

-seen so many specialists (it'd take a long time to count all of them on my fingers!)
-had 1 cortisone shot in my hypertrophic scar on the bottom of my right foot
-been diagnosed with CRPS in my right foot in March
-went through 1 lumbar sympathetic block procedure in April
(CRPS spread to my left foot in April '11)
-had various diagnostic tests (an MRI, triple-phase bone scan, x-rays, nerve conduction study, heart echocardiogram, etc.)
-went through a 2-day spinal cord stimulator trial in August
-had a spinal cord stimulator implant surgery in September
(CRPS spread to my left arm in November)
-seen many pain psychologists, physical therapists, and occupational hand therapists
-had 4 stellate ganglion blocks in my neck from December to February
-taken Vicodin, Gabapentin, Pregabalin, Oxycodone, Tramadol, Nortriptyline, and Cymbalta
-been diagnosed with a rare genetic connective tissue disease called Ehlers-Danlos Syndrome
(CRPS spread to my upper back in April)

I know now all this was God's purpose for my life all along.  Before I was created in my Mom's womb, He knew that I would have CRPS and EDS.

"For you formed my inward parts; you knitted me together in my mother's womb.

I praise you, for I am fearfully and wonderfully made.

Wonderful are your works;

my soul knows it very well.

My frame was not hidden from you, when I was being made in secret,

intricately woven in the depths of the earth.

Your eyes saw my unformed substance;

in your book were written, every one of them,

the days that were formed for me,

when as yet there was none of them.

How precious to me are your thoughts, O God!  How vast is the sum of them!

~Psalm 139:13-17

Both CRPS and EDS have stretched me and changed me like no other way!  Sometimes, I try to remember what it was like before the first symptoms came on, but it's hard to because it seems like I've had these conditions all my life.  But I have learned so much these past two years, and it has been very eye-opening.  As time goes on, I'm learning that these two conditions are gifts from the Lord.

Right now, I've just been taking each day as it comes.  I was able to see my pain dr. on Thursday, and the plan is to increase the Cymbalta for now and continue physical therapy.  My dr. stressed that I need to regularly take vitamin D since low D can cause pain.  We talked about CRPS flare-ups and the possibility that they will be with me in the future..  I'm glad I saw my pain team because I was also able to say goodbye to one of the pain fellows who left for Massachusetts on Friday. :)  He was my favorite of the three fellows!  He'll be missed by all.  Every time I saw him, he would tell me, "It's always nice to see you, but it's not nice that you're here." ;)  The next 3 pain fellows will be the third set I've seen!

I'm continually finding that CRPS and EDS go together.  Because my connective tissue is abnormal, my nerves aren't well protected and cushioned, hence the ongoing CRPS flare-ups.  Lately, my joints all over have been popping and cracking from the EDS..  One of my fellow EDSers with CRPS will be having shoulder surgery in August and two possible hip surgeries.  She's been dislocating everyday which makes me wonder if that will one day be me!  But I do have peace about the future and I know God is faithful.  He will carry me through whatever happens.

About 2-3 weeks ago, God showed me His faithfulness once again when I found out that I have been granted an award of $1,500 from the Patient Advocate Foundation's Co-Pay Relief pain fund. :)  Thank you, Lord!  I'm still thanking Him because this has been such a blessing.  From June 2011-June 2013, all my medication co-pays will be paid for up to $1500!  So happy.  What a great gift to remember this day.

P.S.  In honor of this anniversary, it was time to give my old blog template a face-lift! ;)  Hope you like it! :)

Standing Firm in Christ

Yesterday, my sis, younger brother, and I went swimming at the Conestoga rec center. :)  It was a really fun time, considering that I haven't been able to swim since around 2009 because of being on crutches.  When we went to the beach the past two years, I could only watch my siblings swim.  I yearned to be in the water with them!  So yesterday afternoon, we were all free and took advantage of the pretty humid weather by going to the open swim!  I managed pretty well, but once I got home, things went downhill after that. :(  My ankles/feet started aching, and the CRPS began to act up.  It took a while to go to sleep, and I wasn't even sure if I would go to church this morning.  I wanted to because of the joy of sitting at Jesus' feet, but a little ways into Biblical economics class, my left arm started throbbing severely.  It was horrible.  I had to focus on breathing slowly.  My arm changed to the color purple and went back and forth to being hot and cold.  I silently wished I didn't end up coming to church.  It was that bad!  I sent a message to my pain dr. and I hope he gets back tomorrow.

I didn't think this would have happened!  I keep thinking, Was the water too rough on my arm/nervous system??  But I thought swimming was considered therapeutic.. :(  This has been hard but I trust that Christ knows best in this.  On the up side, these episodes always remind me to depend on Him and not on my own strength. :)  I think that's why I go through these!  I just wish they didn't always happen when I was doing so well!  My physical therapist has even been trying to "get me out" of rehab.  So much for that now. ;)  This past week, I read Psalm 125 and even someone from Bible study on Tuesday shared this passage.  God knew this event was gonna happen and He was preparing me with this psalm.  What a great comfort vs. 1 is!

"Those who trust in the Lord are like Mount Zion, 

which cannot be moved, but abides forever."

See, not even this set-back can move me!  Isn't that amazing? :)  So whatever happens in the future, as long as I trust in the Lord, I will NOT be moved.  Thank you, Jesus!

Stay tuned for my July 8th post in honor of my 2-year anniversary since the foot surgery that started this whole dreadful business. ;)

A Bump in the Road

Today I went through my first session of biofeedback! :)  I'm so thankful the pain psychologist that I saw today is down-to-earth and a "bread and butter, meat and potatoes kind of guy" as my pain dr. puts it. :)  He explained biofeedback and diaphragmatic breathing so well that we went right into trying the machine on me.  It didn't hurt at all!  He stuck three electrodes on my left trapezius muscle and on my right because that is where the most muscle tension develops.  Sitting down and using different relaxation techniques, I looked at a moving computer graph that recorded my muscle tension and temperature of my left pinkie finger.

Normal range of muscle tension: below 5 points
My muscle tension: over 22 points  (this surprised all of us!!)

Normal hand temperature range: in the 90s
My hand temperature: around 77 degrees! :O

So for the next 45 minutes, I tried lowering those really high numbers in all kinds of different ways!  My temperature went up to about 83 degrees, but my muscle tension number barely lowered one bit!  I didn't feel that tense, but from those biofeedback numbers, it gave all of us the picture that I have a lot of work to do about this!


Near the end of my appointment, I thought I'd turn off my spinal cord stimulator to see if that would change any of the numbers.  Right when I brushed my magnet near the battery in my back to turn it off, the muscle tension numbers dropped DRAMATICALLY to a range of 3!!!  I laughed out loud!  This is what was causing the high numbers!  I felt so relieved. :D  With a chuckle, the dr. explained that the electrodes must have been taking in all the stimulation from the SCS device, thus causing the high numbers!


At home, I will still be working on these techniques that he taught me.  He is SO booked up right now, that my next scheduled appointment with him is on August 15th!!


Right after seeing him, I rushed down to the first floor for my weekly session of physical therapy.  It was SO painful!  For some reason, my neck hasn't been turning left or right very well at all, so my therapist has been trying everything he knows to fix this new problem.  It's hard work!


And this past Friday, I banged/nicked my left index finger on the sharp edge of a shelf while putting something away, so now it's been hurting more.  It had to be the left index finger of all places.. :(  My finger joints are stiff again and a little swollen, so next week, my physical therapist will probably take me to the hand therapy department so that I can again stick my arm in the "ground corn husks" machine to warm my hand up and try to loosen the stiff joints.  Praying this will help!  This new "injury" is just another reminder to me that I need to totally depend on Christ whether I'm doing well one day or back to "square one" the next day.  He is sovereign!  And I need to do my part by surrendering to His will and letting Him guide my circumstances.  This is a learning process for sure. :)  But God is faithful!  And He will help me through this small bump in the road!


Have a blessed weekend, my friends!

Miscellaneous Happenings

Hi, friends! :)

It's been a while since I last posted!  Even tho' I had absolutely no appointments last week (yay!) because my physical therapist wanted me to take a week's break from intense therapy, life has still been busy!  This morning, I saw my primary care dr. to go over the blood work, and all is pretty well! :)  My vitamin D is low as I wrote in a previous post, so I will be increasing to 4000 IU daily.  I will also be stopping my multi-vitamin and not taking any B vitamins for a while since the levels are above normal.  At the end of the year, I will have blood work once again to check all this.  Other than that, I have no new diseases which I'm very thankful for!  CRPS and EDS is enough for me. ;)  They keep me on my toes!

I learned today that my whole medical record is 66+ pages long!!!  That's a lot! :D  I so wish I could read all that's in it. ;)

Wednesday is PT once again, and on Thursday, I will be getting together with one of the elders at my church to recite Philippians 1 with him.  We've been doing this since last December and recently finished memorizing the whole book of James!  Now we're on to Philippians, and it's kind of been a race!  This definitely motivates me! :)

And the word is OUT!  I am starting to write my own book of my journey with CRPS and EDS! :)  I don't know yet what will come of it, but I'm so excited to see how the Lord will lead me in this and give me the words to write.  My sister Karina is my "editor."  She's always wanted to be one!  I don't know yet if I'll self-publish or find a publisher, but either way, this has been so fun to put together! :)

Until next time!

Kerissa A.

Yesterday's Appointment

Had a great appointment with my pain dr. yesterday! :)  As far as the blood work goes, he's concerned about my vitamin levels.  My B6 level is high, and that's not good because he said elevated B6 can cause nerve damage/pain...  He wants me to contact my primary care dr. and see what's causing this.  The nurse told me to come in and see her, so I have an appt. on June 4th!  Praying this is nothing serious..  Other than that, we're happy the new med is working great and I don't have to increase the dose because my pain level is an average of 3-5 on a scale of one to ten! :)  Next time I see my pain dr., I'll also be seeing one of my St. Jude Medical reps.  My dr. wants him to check the implanted leads/device and add new programs to change things up a bit so that my brain/spinal cord doesn't get used to the stimulation!  That's funny. :D  Not too much else going on.  Still have physical therapy every week, and I'm also trying to decide if I should have genetic testing done (ordered by my rheumatologist) to rule out EDS type IV which is one of the most serious.  I will let you know what happens after I see my primary care doctor!  Stay tuned!

P.S. Just want to give a shout out to my mom! :)  Today's her birthday!  Thank you, Mom, for always being there for me.  I'm so blessed to have you take me to my tons of appointments every week, pick up my regular medications, and help me do the big and little things that are hard for me to do myself, even things like washing my hair brush, peeling/cutting my fruit, or getting the cereal for me in the morning because I'm too short to reach the high cabinet... ;)  Happy birthday, Mom!  I love you!