Upcoming events!

On Wednesday the 30th, my pain dr. will be performing a bilateral lumbar sympathetic block on me. :)  This will be the first time in his career he's ever done one for both feet, so it will be two procedures back to back.  He'll block the sympathetic nerves on the left side of my spine, then on the right.  I haven't had an LSB since April of 2011...since having the flu, though, my feet and hands aren't doing well, so he wants to do a block with ketamine and clonidine to calm down the CRPS pain in my feet.

Guess what?  

Lord willing, I'll be heading to Cincinnati, Ohio soon!!  Maybe even as early as next month! ;)  This past Friday, I talked a lot with my pain dr. about what EDS clinic to go to, and he highly praises Cincinnati Children's Hospital which is one of the top three children's hospitals in the nation.  My neurologist thinks it's now best for me to go out of state and see an EDS specialists since Ehlers-Danlos Syndrome is so rare.  She's been reading papers and papers about the neurological manifestations of EDS which could very well be what's causing my leg weakness, headaches, and eyelid droop.  If/when I head to Cincy, my pain dr. wants me to also go to CCHMC's pain clinic.  And, I hope I can also get help for POTS.  So I have no idea yet how long I'll be there!

But this will without a doubt be a great and exciting adventure! :o)  And I look forward to finally getting an answer for all these symptoms!

Recovering

Yesterday afternoon, I got discharged from the ER. :)  My breathing and heart rate is much better than before, and my fever's still gone which I'm very thankful for.  They put me on a 10-day course of Tamiflu, an anti-viral med.

Any kind of illness can exacerbate the CRPS, and to my great dismay, the flu did just that. :(  My hands and feet are now swollen and oh so painful.  I now walk twice as slow, and I never could walk fast in the first place cuz of my weak leg.  Praying I can get squeezed in to see my pain dr. this week..

Until next time!

P.S.  Please stay well, everyone!  I learned in the hospital that the flu shot only protects one from Influenza A, not B (which is what I have).

The flu

Thank you everyone for your love and support!  I can tell you are praying cuz my fever broke last night. :)  The ambulance ended up taking me to OHSU yesterday cuz my heart rate was so high from my condition POTS, I was dizzy, and my fever was 103 even with Aleve.  They gave me lots of fever medication and an anti-viral called Tamiflu.  Oh yes, I tested positive for Influenza B.  Not fun at all.  The doctors and nurses said I'm one of their sicker patients..  I had 2 EKGs, 4 chest x-rays, and lots of blood work. They wanted to check my lactic acid levels, heart enzymes (since they said I was having sinus tachycardia), and inflammation in my body.  My oxygen sats keep dropping even tho they are giving me oxygen through a tube.  My sats dropped to 77 one time (it should stay at 100) and the alarm went off...that was a little scary.  I'm currently in the observation unit in the ER.  Everytime I stay here, The Bourne Identity is always on TV...now whenever I watch it, it brings back bad memories. ;)  Waiting for the doctors right now...  If they want me to still stay at the hospital, then I'll be admitted to a "real" room.  I'll keep ya updated!

Prayer requests

Well, this has been fun...just kidding.  This past Sunday, my mom came down with a fever and body aches, and she still has a low-grade one even today.  I had 6 appointments this past week (none of which my mom was able to go to, so my sweet older brother and sister took me to all of them), and let me tell you, I never want to schedule 6 in one week again.  Wednesday's was from 8-12 pm, and yesterday's was at 5:30-6-30 in the evening!  I'm so exhausted.  My little brother came down with a cold, too.  *sigh*

So this morning, I came down with a sore throat, a cold, and a fever of 101.3.  In addition to all that, I'm dealing with nystagmus again, and last night in bed, my heart rate was over 120 from the POTS, and I couldn't lower it at all.  My headache's so bad, and my feet hurt from the CRPS.  My sis, too, came down this morning with a high fever of 102.2! x[  *groan*

I'd just appreciate your prayers that we will all be able to get over this soon.  This has been a stressful week, and this coming Tuesday, I have an appointment with one of my doctors and I really don't want to cancel it.

Tests and more tests..

First blog post of the new year! :)  Here's just a little update:

Tomorrow I have my somatosensory and auditory evoked potential EEGs from 8 am-12 pm.  Let's just say I'm not really looking forward to leaving the house at 6:50 in the morning and spending 4 hours with electrodes on my scalp and extremities.  It should be quite an experience!  Hopefully this may give us some answers. :)

I've been so exhausted from dealing with POTS and not sleeping well at all cuz my feet are going through a painful CRPS flare.  I've been getting shiny skin and red blister-like spots on my toes which aren't good CRPS signs at all.  Waiting to hear from my pain dr. about all this..

Thursday my neurologist will be doing an electromyogram study on my left leg, and on Friday, I have my lumbosacral plexus MRI.

Thank you so much for your prayers!

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!