Flare Ups, Frustrations, and Faith...an Update

Re-entry into blogging is tough.  I regret not writing more, but I do not have any regrets about this past year.  I can honestly say that I wasn't writing anything down because I was LIVING life and living it to the fullest.  2011 and 2012 (so far) have been so great.  As far as my health goes, this past year has been the best I have had since I first got sick in college.  This past year, I did not FEEL like a sick person...I felt normal and wonderful.  Well, as "normal" as I'll ever get I suppose....normal is relative.  :-)

"Normal" life for me includes taking 4 pills a day, lab work every 3 months,  check-ups as needed--about every 4 months, and some annual tests (bone density screening, an MRCP which is similar to an MRI on my liver/gull bladder/colon/kidneys, and a colonoscopy).  To the average person, I appear normal and healthy, and I really am for the most part...Matt and I have continued to run since January, and my longest run (unintentionally) was about 6 miles back at the beginning of May!!   I am so proud of Matt for taking initiative to get us active and consistently work out! Way to go, babe!

Then, about two weeks ago I had a flare up that just came out of no where.  I lost almost 7 pounds in 4 days (with about 10 days of school left in the year).  Awesome. Timing.  It kicked my butt--literally. Lots of people ask me what I did to cause this or set off this flare-up.  HA!  That is an excellent question...and honestly, if I knew, I would never do THAT--whatever it was--again.  I didn't eat anything that I normally don't, I wasn't exercising in excess, I was sleeping like I normally do.  IT JUST HAPPENED! 

Honestly, I hate to use the term "chronic illness" to describe what I have but I can't think of a better word or phrase to describe it.  With ulcerative colitis one of the only "knowns" is that there will be flare-ups randomly , regardless of doing everything right (taking my medicine, watching what I eat, getting rest, etc).  Obviously, that is one of the most frustrating things about all of this--I have zero control.

So after a trip to the ER on May 10th, I am back on steroids (prednisone) for about a month.  Having been down this road twice prior to this flare up, I knew what I was in for this time which actually probably made things worse.  Sometimes ignorance is truly bliss, but there is no other treatment plan at this point, so it is what it is--treatment, and I am learning to be grateful for that!!!  Lots of people have asked what it's like being on prednisone, and I'm sure it's different for everyone, but for me the biggest side effects are:

• Mood swings (poor Matt--he does a GREAT job handling me)
• Water retention and gaining weight especially around my face--UGHHHHHH
• My mind won't shut off--kinda like drinking a pot of REALLY strong coffee in the morning, but it goes on ALL day!
• Can't sleep (mostly because my mind won't shut off)
• Night sweats
• Increased appetite (hence the weight gain)

Prednisone works because it is an anti-inflammatory, and it is taken in high doses at first, and then tapers off each week that you are on it so that your body can re acclimate to not having it.  The first week the dose is so high that I'll be honest--I felt so hopeless.  That first week you are waiting for the medicine to even DO anything physically to make me feel better which is frustrating because it takes such a toll on your mind and body due to the side effects; in addition, I felt so emotional (frustrated that I was sick, anxious if the medicine would ever work, stressed that I had to miss work especially at the end of the year).  Two weeks into the medicine, I am finally starting to feel more like myself again.  I am starting to get better sleep, school is out for the summer which obviously means I'm less stressed but also means I can actually rest during the day and not be on my feet and on the go...and I think as I taper off the medicine the side effects lessen (that's my hope at least)!!

Even though all of this is extremely frustrating, I feel like God has used this condition in my life to teach me about abandoning control, giving thanks in all circumstances, and has even given me opportunities to share my experiences with others in similar situations.  (I have a friend at school that was battling some GI issues, and we have been able to share our experiences, pray together, and I've given her a referral to my excellent GI doctor! LOL).  At least I feel like I'm using all this sickness for a greater good!

I am constantly being reminded that it's not about me...that it's about Him.  In my weakness, He is definitely made stronger, and I cling to Him even more.  He is the Ultimate Physician.  One of my favorite songs right now is "In Christ Alone."  These lyrics seem to speak to regardless of my circumstances:

In Christ alone my hope is found
He is my light, my strength, my song
This Cornerstone, this solid ground
Firm through the fiercest drought and storm

What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand

In Christ alone, who took on flesh
Fullness of God in helpless Babe
This gift of love and righteousness
Scorned by the ones He came to save
 

Til on that cross as Jesus died
The wrath of God was satisfied
For every sin on Him was laid
Here in the death of Christ I live, I live

There in the ground His body lay
[ From: http://www.elyrics.net/read/n/natalie-grant-lyrics/in-christ-alone-lyrics.html]
Light of the world by darkness slain
Then bursting forth in glorious Day
Up from the grave He rose again

And as He stands in victory
Sin?s curse has lost its grip on me
For I am His and He is mine
Bought with the precious blood of Christ

No guilt in life, no fear in death
This is the power of Christ in me
From a life?s first cry to final breath
Jesus commands my destiny

No power of hell, no scheme of man
Could ever pluck me from His hand

Til He returns or calls me home
Here in the power of Christ I stand

I will stand, I will stand
All other ground is sinking sand
All other ground, all other ground
Is sinking sand, is sinking sand
So I stand

What can you do?  Pray!!

1. That I finish out my treatment and have no flare-ups as I taper off prednisone or once I am off it completely.
2. That my colonoscopy on June 25 goes well.  Honestly, I'm not worried about it this time, but it will be great to hear the results and know if there is something going on internally... 
3. For patience with myself as my body returns to a state of "remission" and goes back to "my normal."  I would like to see immediate results, but it's definitely a process that I can't push.  It just doesn't do any good anyway. 
4. That I am feeling good by June 8th when we go to Disney World with the Kleppes!  We have been looking forward to taking this trip for months, and we are so excited to get away.  I just want to feel good while we're there!

I'll keep you posted!