Posted in Dealing with Trials, Faith, Inspiration, Life with CF, Uncategorized

Coke or Pepsi?

No, this post isn’t about voting for your favorite soft drink, but rather a thought that was inspired by a book our daughter, Meghan, has, Coke or Pepsi Unlimited. It’s a fun book, meant to be shared with family and friends, that covers a wide range of topics from favorite scents to what superhero powers one might like to have. One of Meghan’s favorite sections covers “Would you rather…” scenarios. There are questions such as, Would you rather have 3 eyes or 4 arms? “Would you rather have a lifetime of bad hair days or “I hate all my clothes days?” Would you rather always have a stain on your shirt or always have something stuck in your front teeth? You get the idea. While we all enjoy humoring Meghan with our answers for these seemingly silly questions, I’ve learned that sometimes in life we encounter “Would you rather…” questions that aren’t quite so amusing.

Recently I encountered such a scenario when I was hospitalized for my Cystic Fibrosis (CF). At the start of my stay, the doctors discovered through testing that I was resistant to all but two IV antibiotics, Tobramycin and Colistin, to help fight the infection in my lungs. Both are very effective at treating the bacteria that were the source of my infection. The downside to using them is their toxicity levels. Tobramycin has long been known to be toxic to the kidneys. It can also cause hearing loss, something I’m already beginning to experience due to the many courses of this antibiotic I’ve taken over the years. In terms of toxicity, Colistin can severely impact the nervous system. It is also even more toxic to the kidneys than Tobramycin, which is why it is usually one of the last IV drugs of choice for CF patients. In fact, I had been put on Colistin once before, and though it was administered with a 24-hour saline drip for dilution, my kidneys stopped tolerating it after just three days. Unfortunate as it was, in this most recent case we were out of options. The doctors decided that the benefits outweighed the risks and decided to put me on both IV drugs to combat my infection.

I was extremely anxious about how my kidneys would tolerate the two drugs together and openly discussed this with my doctor. It was a very frank “Would you rather…” dialogue. I asked if my kidneys started showing signs of distress what our first course of action would be. He said, “Take you off the Tobramycin and just administer the Colistin and fluids.” If that still isn’t enough? “Cut down the dose of Colistin.” If that still is no good? I remember his response so clearly, “Well, Jen, in that case I would rather see you on dialysis than to lose your lungs.” I had to let that sink in a minute. Would I rather go on dialysis for kidney failure or be able to continue to breathe? Wow, talk about a punch. I remember silently complaining, “Geez, God, no one should have to make decisions like this. Mine just keep getting harder and harder. How unfair.”

Then it occurred to me that Jesus had encountered the ultimate difficult “Would you rather…” decision that fateful night in the Garden of Gethsemane. Would you rather die on a cross and shoulder all the sins of the world to save all of humanity or let this cup pass over You, fall out of favor with Your Heavenly Father and lose all the souls of humanity to Satan’s evil? Unbelievable, isn’t it? No wonder Jesus was sweating blood! That decision made my decision about kidneys vs. lungs sound like child’s play comparatively. I was immediately a little bit embarrassed for my earlier gripe.

So what do we do in these situations when we encounter what seems like an impossible “Would you rather…” decision? One of my favorite bible verses is found in Proverbs 3:5-6, Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge Him, and He will make straight your paths. When we encounter difficult decisions in our own lives, we have to look to Jesus not only because the bible tells us to, but also because He’s been there and truly understands our need for answers. I wonder if He sometimes allows us to encounter these monumental questions in life, to remind us just how important it is to trust in Him and to consult Him in our decision-making.

Lucky for me, just like the answers to the questions in Meghan’s Coke or Pepsi Unlimited book, my situation became a non-issue. Through the power of many people’s prayers, I was able to tolerate both medicines and went home 17 days later in much better health. I realized though that for all of us, there may be times in life when it will not be that simple and a difficult decision will have to be made. What we all need to remember is that Jesus is there and not only does His Word give us guidance, but it also demonstrates that He can empathize completely with us having been there Himself. Psalm 119:105 sums it up perfectly. Thy word is a lamp unto my feet and a light unto my path. When in doubt, the answer is clear. God. He won’t ever steer us wrong.

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Posted in Faith, Inspiration, Life with CF, Uncategorized

What CF Can’t Have

TODAY’S FORECAST: Strong and courageous

Lovingly dedicated to all who battle with Cystic Fibrosis (CF). We are fighting the good fight and we WILL find a cure! To join us in the fight against CF go to http://www.cff.org/great_strides/JenniferWuersig  or click the Great Strides logo in my side menu. Thanks for your support!

 

What CF Can’t Have

You may have my time with appointments and meds

You may have my pride when my coughing turns heads

You may have my sleep when the pain gets too great

You may have my figure when I can’t control weight

 

You may have my schedule when I have to say “No”

You may have my breath when my oxygen’s low

You may have my appetite when nausea appears

You may have my emotions, worries and fears

 

You may have my vitamins when absorption is weak

You may have my insulin on a high or low streak

But the things you can’t have, they’re beyond your control

Are my greatest weapons, my heart and my soul.

~Jen Wuersig 3/7/13~

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6

 

 

 

 

Posted in Dealing with Trials, Inspiration, Life with CF, Uncategorized

A Name for the Pain

TODAY’S FORECAST: Submissive to grace

It is no secret that the last several months (years??!!!) of my life have been plagued with pain. A chronic illness like Cystic Fibrosis, which impacts so many of the body’s systems, lends itself to pain naturally; yet, the last nine months have been excruciating for me in some sense, worse than anything I’ve experienced before. Despite me trying to “let go and let God,” I continually feared whether this was an indication that my CF was continuing to decline or that something new was cropping up. Neither really thrill me at this point. Today I learned it was the latter. That pain has a tangible name, Fibromyalgia.

I have heard this “term” several times before, as well as ones associated with it including “Chronic Fatigue Syndrome,” “Irritable Bowel Syndrome or IBS,” “tender points,” etc. I heard them, but did not really hear them if you know what I mean. Today I sincerely apologize to anyone who may suffer from any of these for my ignorance and inattention. These are not just “made-up” catch phrases. They are very real sources of pain and suffering to real people. My pain has been relentless, especially in the last couple months. It has been searing, burning, aching, and honestly, indescribable at moments. I assumed it was all part and parcel to the chronic inflammation with my CF; some of it truly is, but then the more recent discomfort is largely due to the Fibromyalgia symptoms.

The thing is, I realized today that no matter what suffering I have endured (or think I have endured) it will never, ever compare to the suffering of Christ. His pain had a name too, it is called “sin,” our sin. I can’t imagine what it was like to be nailed to a cross, can you? Just try to imagine that insufferable agony. To have your back ache from being so brutally whipped and beaten, and then to be shoved onto rough, hard wood by uncaring hands seems more than just a little unbearable. Jesus’ pain did not stop there though, oh no. He had nails ripping through his flesh and a crown piercing his head and temples. He was fatigued, He was thirsty, and  for the moment when all the sin of the world was being carried on His shoulders and He felt utter and complete separation from His Father, He faced an ultimate despair. It makes the pain I’ve felt these last few months sound like a “cake-walk” comparatively.

This week as we embark on the journey of Lent, those 40 days in preparation of Jesus’ ultimate sacrifice, let us remember what “real” pain is and the gravity and reason for celebration of the occasion. Out of complete love and adoration for us, God gave us His only son in the “Great Exchange” for our sin. My prayer is that I’m able to offer up the pains and tragedies of my life, no matter how seemingly large or insignificant, and seek the grace of His resurrection and His abiding love.

If you think you or someone you know may be suffering from Fibromyalgia and want/need more information, check out these resources:

http://www.fmaware.org/

http://www.webmd.com/fibromyalgia/default.htm

Posted in Being a Friend, Being a Mom, Being a Wife, Dealing with Trials, Faith, Family, Inspiration, Life with CF, Uncategorized, Womanhood

Say What?

TODAY’S FORECAST: Full of praise

Yesterday my parents dropped off some Valentine’s Day treats for our kids because they would not be seeing us to give them to the kids on Valentine’s Day. While they were here, my mom also gave me a little book called, Prison to Praise by Merlin Carothers. It’s a very small book; in fact, I would have initially called it a booklet on first glance because of its size, but let me tell you how that little book packed a seriously large punch! merlin carothers

I was feeling so sick yesterday late afternoon into the late evening with a fever and other side effects from the infections I’m currently fighting. At about 9:00 last night, Bob was picking up Meghan from basketball and Jake was already asleep in bed. I got out of bed to go get some ice and a glass for the soda I had been sipping on that had since gotten warm. I saw the book laying on the kitchen counter and decided to take it and my drink back to bed with me.

As I said earlier, this book really packed a powerful punch. Rocky has nothing on this little book! The timeliness of it was truly astounding; not only for me, but also for others I had been praying for in my life recently as well whose situations were happening almost word for word within this book! I mean, after I wrote my blog post about positivity yesterday, this book even addressed the difference between positive and praise. How much more timely could God get? What stunned me even more was that I found out that this book was written in 1970. You would think it would be outdated and irrelevant by now, but I’m telling you, it is as relevant as if it was written yesterday.

I can promise this book is unlike anything you’ve ever read before. It’s a very easy, quick read, though the content may not be as quick and easy to swallow. The author, Merlin Carothers, talks about his own personal faith  journey which is not so unusual, but then shares how God encouraged him to praise Him for all the bad things happening in his life and what resulted when Merlin did just that.

“Say what?!!!” That’s exactly what I said to myself when I was reading this book. Praise God for giving me Cystic Fibrosis? Praise Him for my pain? Praise Him for the 40 oral, injectable and inhaled meds I take a day? Praise Him that Bob had a heart attack? Praise Him that Jacob has severe food allergies? Praise Him for the recent Sandy Hook tragedy? Praise Him for addiction and abandoned children? I was kinda floored, to say the least.

As I continued reading; however, there was an indescribable urge I felt to act on something I didn’t fully understand. So I started immediately, though not very eloquently at the time. “Lord I praise you for my suffering today and I offer it up to you. I don’t fully understand why it is happening, why all of it is happening, but I’m thankful that I know You are near me because of it. Help me to always be in Praise of You, even in the most difficult times.”

Nothing drastic happened besides a little more peace that I’d spent some good time reading and praying, but it really left a deep impression on my heart. In doing a little more research today, I found out that Merlin Carothers has now written six such books of inspiration and guidance and that they have been translated into many languages across the globe. His next book is called Power in Praise. He wrote it 10 years after his first, and I can’t wait to get a hold of it. I’d ask that you pray for me on this new journey of praise I’m embarking on. I’ll of course be happy to do the same for you.

Thessalonians 5:16-18: Rejoice always, pray without ceasing, in everything give thanks, for this is the will of God in Christ Jesus for you.

Psalm 113:3: From the rising of the sun to the setting of the same, the name of the LORD is to be praised  

Posted in Being a Friend, Being a Mom, Being a Wife, Dealing with Trials, Faith, Family, Inspiration, Life with CF, Uncategorized, Womanhood

Little Miss Sunshine

TODAY’S FORECAST: Optimistic

Positive blog postRecently, I had someone say to me, “Why pretend to be happy? You can say it, sometimes life sucks! You don’t always have to try to be positive.” It’s been niggling in the back of my brain for a little while, sneaking into my thoughts every now and then. If I’m being completely honest, it’s a little bothersome to me because I take it to mean, “Jen, you’re not being genuine,” and “Ouch, that kinda hurts.”

I mean, yes, I would agree that I’m generally a positive person. Yellow is my favorite color. I’m outgoing and talkative, and when I meet people, I generally have a smile. I’ve heard more than once how “bubbly” I am, and I wouldn’t disagree with that assessment. I write encouraging words to friends when I can, including those of you who read my blog or my facebook page. Yet that doesn’t mean my world is always full of sunshine.

I also have my moments when I’m not so positive and I express real pain and sadness for the things that have gone on in my life. I have shared my hurt and disapppointment about bad test results, daily pain, living with chronic illness, etc. I have days at home where I cry because I think I can’t stand one more minute of pain or one more complication with my health. I have felt guilt that my husband has to take on tasks by himself and that my kids cannot have a “normal” mom. I feel sadness when we keep losing lives in the Cystic Fibrosis community and when my own parents or Bob’s are dealing with the complications of aging. I don’t think I’ve been shy about sharing the ups and the downs, especially with the people who are closest to me.

The thing is, I have lots of reasons to be more positive than negative. I guess you could say that I have had some awakening in the last few years, of how much God loves me and how AWESOME He is. For all the things that keep hitting our family, the struggles we’ve been through in the last few years, He has given us some abundant blessings. He is leading me to a place where He is in control and I am trusting that He knows what is best. Let me tell you how unlike me that really is. I am a control freak. I am not a truster. I do it best myself, and that’s the way it has been for years. Yet, I honestly believe He is changing that in me. That, my friends, is something so beyond me, it has to be from Him; because me, the real me, could not be where I am with the attitude I have now without some sort of “supernatural” intervention.

I also have an AMAZING support system in my family and friends. When you get sick, I mean really sick, you quickly find out who your “real friends” are. God has placed people in my life, some that I’ve known for years and some that I didn’t even know a year ago, and somehow they have been there for me in ways I couldn’t have ever dreamed. I wrote it in an earlier post in the blog, but they are complete angels, and I don’t know what I’d do without them. Our families? Our families are not perfect. We have our gripes about one another, we get on each other’s nerves occasionally, as most families do; but we LOVE each other so much. If I needed one of my family members on my side or Bob’s, I could pick up the phone and say “Please come,” and they’d be there. Not everyone can say that, and I consider myself very lucky.

So tell me then, what’s not to be positive about? Through all the pain, all the struggles, all the financial strains, all the difficult moments, I have so much to be thankful for. My heart is so full. My body may be betraying me, but I have so much love and support in my journey; this happiness, this bubbliness cannot be contained. I wish that for all of you, peace, support and love during all your difficult times. If you’re not feeling it, give it to God. He is truly my source of happiness and help.

He prays to God and finds favor with Him, he sees God’s face and shouts for joy; he is restored by God to his righteous state. Job 33:26

Posted in Being a Mom, Being a Wife, Faith, Inspiration, Life with CF, Womanhood

A Call to Write

TODAY’S FORECAST: Content

I first started writing prose and poetry when I was eight. I remember I got my first writing journal that Christmas. It had a dark green jacket with a creme-colored front that had a pencil-sketched frog on it. Funny thing is, I still have that journal. In fact, in starting to attack the boxes that remained to be unpacked on the unfinished side of our basement (you know, the ones that I have been closing the door on and walking away from since we moved in last June), Bob and I came across that journal just this past weekend. One of my eight year-old poems read:

I had a horse

Who took a course

In playing tennis

His name was Dennis.

Ha! That was the first of many poems and stories that filled that journal. Over the years I’ve had many such journals. Some are half-filled, some are filled from beginning to end. In my high-school years I wasn’t shy about sharing my poems. They went to my close friends, the boys I had crushes on, my church youth groups, etc. It was then that I knew I wanted to be a writer.

Throughout high school, family, friends and teachers all encouraged me to write. I seemed to have a knack for it; it came so easily. When I graduated high school I looked for a college that would support me in pursuing my dream. As luck would have it, Bowling Green State University (in Ohio) was one of three universities in the US at the time that offered Creative Writing as a major. I got accepted, won a local scholarship, lined up a great summer job and enlisted the financial help of my parents. I thought I was on my way. Then something changed.

Reality bit me, I guess. Suddenly, I had doubts that I was going to write a best seller novel before I turned 20. All of the sudden, for no particular reason, I was considering a “fallback.” My fallback was teaching. No offense to all you teachers out there who I so greatly respect, I took my career change as seriously as any 19-year old could. I put my all into it. I got straight A’s in all my education courses. My concentration was in English. I felt like I had found my niche. As a student teacher I did great, connecting with the kids. My creativity came in handy in the classroom, especially with junior high and high school students who needed to learn that English was just not all subjects and predicates.

I graduated from BGSU in four and a half years, ready to take the teaching world by storm. I would write occasionally, but mostly in the way of lesson plans or applications. I subbed in a local school system. Initially, I was put in the most dismal situations. I seemed to get assigned to all of the most difficult scenarios where all they needed was a warm body to prove they had a teacher there. I was well-liked as a sub for my organization and passion for the “difficult” kids, but I came home crying every day. I was offered a long-term sub contract by the district with a promise of full-time employment the following Spring if all went well. I didn’t even share that with my parents at the time. I hated every minute of teaching. What I had thought was a passion, quickly became a source of misery. I decided that it would not be fair to the kids I was teaching to continue that journey; I knew it wouldn’t be fair to me. I quickly found work in the business world and as I had in my short-lived teaching career, I excelled there as well. As an instructional designer and training manager I combined my writing skills with my education degree for a career that spanned close to two decades. I wouldn’t have changed it for the world.

During that time, I wrote on occasion, but a husband, kids, a career and my health care would limit my writing time significantly. I still kept writing journals and at different points, inspiration would kick in and I’d still write what I considered to be “decent stuff.” Old friends from my high school days told me they were still waiting to see that best seller novel. They were dead serious. Some of them still are. So a couple of years ago I wrote a novel about my journey with CF, but it was a complete flop! I could call it a work in progress, but who are we kidding?

When I had to quit working due to my declining health, writing became therapy. It still is today. A few months back, I started this blog. I had been considering the blog for a while. The day I decided to go live, everything fell into place so easily; the title, the format, the first posts. I felt like I was exactly where I was supposed to be. I now know I am. I may not be a best seller novelist (yet! :-)), but God has allowed me a place to share my thoughts through writing. It’s more fulfilling than I’ve ever dreamed. Thank you God, for molding me into a place that I can share my greatest passions, a love of writing and my love for You!

Posted in Being a Wife, Dealing with Trials, Faith, Inspiration, Life with CF, Uncategorized

“Buying the Hype”

TODAY’S FORECAST: Graced

My hubby, Bob, always teases me about how excited I get when I receive positive feedback from my friends on Facebook, readers on my blog or those who have met me at a CF event that I’ve participated in or have spoken at. He always says the same thing, “No, no, no! These people are all buying the hype! They need to see the Jenny that I live with at home.” It makes me laugh every time. He teases me incessantly about this “evil seed” that somehow the doctors have missed in all their ultrasounds, x-rays, CT scans, MRIs and blood work that makes me cranky and impatient. He tells me he has high hopes that one day, someone will find it and remove it since they’ve pretty much removed every other non-vital organ in all my surgeries. Do you see why I love this man? He keeps me laughing all the time. 🙂

Bob has a point though. Unless it’s someone who really, really knows me, many times I interact with people on a pretty “surface-level” basis. They get to see me at my “best,” through a post that I’ve made, through a couple of meetings, from a phone call or two, etc. Bob lives with me. He gets to see it all. Let me tell you guys, if I’m being 100% honest, it’s not always pretty.

Bob sees me without makeup looking pale. He sees me after days of sink baths with my hair pulled up in a clip when my port is accessed for IV antibiotics. He sees me coughing up stuff that no one should have to witness, especially during intimate encounters. He’s seen the not-so-nice side of mood swings from medicines I take. He’s seen me angry at my Cystic Fibrosis at the times that it is not inspiring but disgusting and painful. He sees me crabby and impatient when I’m talking with the pharmacy, insurance companies or Social Security. He’s seen me complain about family and friends. He’s seen my pride in over-drive when I’ve been not bubbly and vivacious, but attention-seeking and dramatic. He’s seen me yell at our kids when I don’t feel good and be lazy when depression takes its toll. Bob has seen the real me and still loves me beyond measure. He is my rock and a gift.

I think about the things that Bob can see from his end of things and I feel ugly in those moments sometimes. Then I think about the thoughts that I think and the feelings that I harbor that Bob can’t see, but that God can, and then I really start to feel sick. Yet like my dear, sweet hubby, but on such a fantastically greater scale than he or I could ever comprehend, I believe God loves me unconditionally. Even with all my life’s secrets, the stains of my sin, that “evil seed,” God loves me and cares for me. He has essentially “bought the hype” because I am His child. The realization still floors me, even after years of welcoming His love.

Do you have an “evil seed” somewhere that you think is beyond God’s love, anyone’s love? I am here to assure you that you’re wrong. Romans 8:38-39 says, For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

What an incredibly awesome and incomprehensible gift! I have a word of advice today. If you do not have someone as wonderful and as forgiving in your life as I do in my husband, I’m sorry, you deserve that. BUT… it doesn’t matter honestly, because as wonderful as Bob’s love and understanding is in my life, God is the one that really matters. He is the one that you really need to “buy your hype,” and He does and will show you, if only You invite Him to do so.

Lord, I know you “buy my hype.” You created my blueprints and You know me EXACTLY as I am. I’m sorry for the “evil seeds” that are lurking in my life. Forgive me and help me to abide in Your love. Thanks for Your gracious gift. Amen.