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!

New Update

A humorous story:

I woke up yesterday morning, got ready for church, and headed downstairs to eat breakfast, putting my magnet that turns my SCS device on/off in my purse like I always do whenever I go outside.  Walking/running into church on 2 1/2 inch heels, I visited with some friends and then slipped into my seat as we all gathered into the sanctuary for worship.  Halfway through one of the songs, I noticed that I didn't even turn my stim on since waking up in the morning! :D  I didn't even notice that it was off! haha ;)  In addition to the stimulation, it turns out that the duloxetine has been really helping the pain in my feet!  Praise Jesus. :)

Update:  Last Friday, I finally received my blood work results in the mail!  It isn't the best of news...  They tested the levels of my vitamin D, B6, and B12, and my D is too low even though I pretty much take one softgel a day.  My B6 and B12 levels are waayyy too high even though I don't even take B6 as a separate supplement!!  This might not be a concern at all, but we will soon find out when I see my pain dr.  My appointment with him is this Wednesday at 7:30 IN THE MORNING!!! :O  The earliest yet for an office visit..  I will update again soon after I see him!

Rejoicing in Suffering

I recently memorized Romans 5:1-5, and it's a beautiful passage of Scripture!

"Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ.  Through Him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God.  More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us."

My friends, my journey with CRPS and EDS isn't in vain. :)  That's a truth!  This passage of Paul's tells me that suffering produces many things: endurance, character, hope.  Which is why I aim to rejoice in my sufferings.  It's not always the easiest, but I aim to rejoice in my finger tremors, the discoloration and coldness in my extremities, delayed motor responses, and the burning, aching pain in my feet, arm, and back.  I look at Paul's life, and my sufferings pale in comparison to his.  He's one of my examples---he boasted in his weaknesses because he wanted to magnify God's grace and power in his life.  He had numerous imprisonments and countless beatings, often being near death.  He said, "Five time I received at the hands of the Jews the forty lashes less one.  Three times I was beaten with rods.  Once I was stoned.  Three times I was shipwrecked; a night and a day I was adrift at sea...in toil and hardship, through many a sleepless night, in hunger and thirst, often without food, in cold and exposure" (2 Corinthians 11:23-27).

As I go through the ups and downs, many times experiencing the CRPS pain skyrocket to an 8 on a scale of one to ten, I continually look to one of my life verses: "...I will rejoice, for I know that through your prayers and the help of the Spirit of Jesus Christ this will turn out for my deliverance, as it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death.  For to me to live is Christ and to die is gain" (Philippians 1:18-21).  As I said in my first blog post, even if you don't have a painful chronic condition like me, join me in my goal! :)

Matt Hammitt has another song called Let It Bring You Praise, and it's exactly my prayer. :)

Update: On Monday, I had my blood drawn in my right arm---two big tubes of blood and one little one!  It went well.  IVs are definitely worse. ;)  And praise God, I didn't get a CRPS flare-up in my right arm! :)  I just have a big bruise at the site from the EDS because my blood vessels are very fragile.  Anyway, still haven't heard from my dr. regarding the lab work...hopefully soon, but as the saying goes, "No news is good news!" :D  I'm now taking duloxetine for the pain, and it's giving me relief already even tho' I'm not at a therapeutic dose yet. :)  Still on the waiting list to see Dr. Kern at the pain center for biofeedback.  He's booked up till June 15th!!  Physical therapy's going great.  It's been a long process, but I can now lift my right arm sideways about 145 degrees as opposed to 90 degrees when I first got the varicella vaccine back in March! :)

New Developments...again

"When obstacles and trials seem

Like prison walls to be,

I do the little I can do

And leave the rest to Thee.

And when there seems no chance, no change,

From grief can set me free,

Hope finds its strength in helplessness,

And calmly waits for Thee."

-from Streams in the Desert

As I wrote in a previous post, my life is truly a "two steps forward, one step back" kind-of-thing.  One and a half weeks ago, I was actually doing so well!  I didn't have burning pain in my left arm, and pretty much the only pain I had was localized in my finger from the initial trauma back in November.  But that was not to last.  On Friday, I noticed my left upper back burning.  It wasn't too painful, but the next day, things started feeling worse.  By Monday, the burning pain spread to my right upper back, so I emailed my pain management dr., and by God's grace, he had an opening for me to see him this morning.  It's been a long day.  The CRPS has, in fact, spread to my back, and we're not yet sure why.  Today, my dr. told me CRPS doesn't usually spread to other areas this quickly.  This does happen but not very often.  He said that, in other people, CRPS usually stays in one spot, like in the foot.  But with me, CRPS is more of a whole body disease of the nervous system.

Sooo, now I am to get some lab work done, and if anything shows up positive, I will go back to the OHSU rheumatologist to once again rule out any other diseases/conditions.  I will be starting up biofeedback with one of the doctors at the pain center.  My pain dr. also wants me to switch the nortriptyline to a different pain med because the nortriptyline may partly be why I have tachycardia..  Waiting to hear back from him right now because the cost of the med I was going to try is SO expensive!  The pharmacy told us it's expensive because it's a brand name and is classed as a tier 2 drug. :\

Thank you so much for your prayers!  Prayer is powerful. :)  I will keep updating when there are new developments!