Thursday, March 20, 2014


It's 3:30 am and I wish I was sleeping...but since I'm awake due to GP pain I figured I would update my blog. So at least all you reading my blog (i.e. Mom) can enjoy my midnight post even if I wish I was sleeping instead =P

On the breathing side of life, I've been doing well! Yay! Definitely something to be thankful for. Actually, now that I look at the date, it's been exactly 1 month since I was in the hospital. I did have a short period about a week or two after I was discharged where I started having coughing at night only, but that appears to have subsided. It was weird...maybe anyone who has experienced something similar can comment on it, but my symptoms were odd and very unusual for me. I would start coughing pretty hard between 6-7 pm and struggle through the night with constant coughing and an irritated throat/airways. I had to start up my nebulizer treatments again just at night. During the day I was pretty much completely fine...I was running and going about my daily life with no issues...until the clock struck 6 pm and I turned into a pumpkin =P This happened for about a week, but has since settled down.

I had a follow-up with the pulmonologist that I saw while I was in the hospital which was a good appointment. Other than waiting for 3+ hours (yes, you read that right...3 HOURS) before I actually saw him, the visit was productive. He wrote me a prescription for more of the mast cell stabilizer to use in my nebulizer in case I started having another reaction to something, and we discussed an "action plan" of sorts for when I feel like I've hit a breathing trigger and how to handle that. He also prescribed an anticholinergic to use that is also supposed to be helpful for MCAS, so I am going to start that and see how things go. During my run just a few days ago, I was feeling encouraged and thinking that I finally feel like I'm moving to more of a maintenance phase in managing all my issues rather than still trying to sort things out...

And then yesterday happened...

Overall, on the stomach side of things, my GP has been really well managed. Other than having a few issues right after being in the hospital, I've felt like I have been able to eat more or less normally and not had many issues. This week even I was doing well, up until yesterday afternoon/evening...that's when things went VERY wrong. I'm not good with the "rate your pain on a scale from 1-10" things that doctors always ask...I always either say 6 or 4, if I'm hurting bad I say 6, if I'm only hurting a little I say 4...but last night I was probably an 8. I had to go to a class I was taking at church and considered not going, but ended up trying to tough it out. Note to self - poor life decision...I was sitting in the class, shaking and trying not to start crying because I was in so much pain. I don't remember a single thing the speaker said last night, and I ended up leaving after an hour. Walking to my car, I couldn't even stand up straight I hurt so bad. I hurt in my stomach, back, and chest, I was extremely nauseas, dizzy, and lightheaded and kind of nervous I might pass out. When I got home I just wanted to curl up into a ball in bed, try to sleep it off, and hope it was gone when I woke up in the morning...since it's 3:30 and I can't sleep I think I can say my plan did not work as I had least not entirely =(

Anyway, about 9 or 9:30 the nausea finally got the best of me and I became reacquainted with what I ate for dinner on Monday night...and yesterday was Wednesday...I guess some of what I eaten had digested, but there was definitely enough left that I could clearly identify the Chipotle chicken and rice...I know it's cliche but it definitely tasted better on Monday than last night =P I don't really know what set off this reaction or why it was so severe and came on so quickly...I guess something started getting backed up and when things stopped moving everything bottled-necked until my stomach said ENOUGH. After I threw up I did feel a bit better, but I'm still hurting a bit which I guess is why I can't sleep right now...tomorrow (today?) is going to be a long day...but at least Friday is the start of spring break!

I try to be positive about everything even when it's tough because I know it could always be worse. I AM grateful that I don't have that pain every time I eat. I AM thankful that I am recovering well from being in the hospital and am back to running at least some. I AM encouraged at that we are making progress in managing a lot of my symptoms. But it's still frustrating when things like this happen...especially after I was just feeling so good about handling my breathing issues.

Something I read or heard a while back gave me a really cool perspective on things and definitely helps in times when I'm really struggling. I don't remember the exact quote but is was something related to how our trials help keep our focus on heaven. A lot of times people always seen trials as being from Satan designed to hurt or damage us, but what if sometimes they are not. What if sometimes the hard times in life are blessings from God? Laura Story sings a song called Blessings and one of the lines in it says "What if my greatest disappointment or the aching of this life is the revealing of a greater thirst this world can't satisfy?"

I was reading the story of Abraham preparing to sacrifice his son Isaac because God asked him to. I'm sure Abraham didn't want to, how many parents want to kill their children? But he went anyway. My pastor at church uses the example of a bicycle wheel to explain where we put our importance. God should be at the hub of that wheel and all the spokes represent everything that we do which should come from loving and focusing on God at the center of our lives. But many times we tend to place something else at the center of that wheel.  What if the reason God asked Abraham to sacrifice Isaac was because Isaac was becoming the hub of Abraham's wheel? What if God wasn't trying to punish to hurt Abraham, but to make sure his focus was in the right place? Maybe, just maybe, God sometimes uses trials to make sure we are not losing focus of what truly matters.

What if my struggles are not attacks from Satan, but blessings from God? Without these trials, maybe I would easily lose focus of God and place something else at the hub of my bike wheel. Maybe God sends these challenges to me to remind me that this world is not my home. I know I have a tendency to get extremely focused on things and lose sight of the big picture at times. Maybe God knows that without these medical issues, I would replace Him at the center of my wheel with something else, so He keeps me weak so I can be strong in Him. What if the aching in my life is God's way of keeping my thirst for heaven instead of getting attached to the comfort of this world? I don't think God was asking Abraham to sacrifice Isaac because He wanted to hurt him or see him struggle. I think God knew Abraham was placing his one and only son at the hub of his bike wheel...and He loved Abraham too much to let him lose focus and miss out on all that God had promised.

Maybe my trials don't mean that God is letting Satan run all over me, but that He loves me too much to let me have control...what if my disappointment in not being healed or the aching and pain of GP are blessings that remind me I live in a fallen world so I don't get comfortable here...I don't want to replace God at the center of my bike wheel and forget that this is not my home...maybe all this is God's way of reminding me that I have the hope of a new, perfect body when I get to heaven for all eternity. When I look at it that way, how can I not feel BLESSED that God loves me too much to let me forget that I was created for Him and not this world. I AM blessed because my trials point me back to God...just don't ask me how blessed I feel later today when I'm feeling the lack of sleep from being awake at 3:30 in the morning...haha, just kidding, now it's 4:45...

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering

And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near

What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home

It's not our home

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise.

Laura Story - Blessings

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