Making it Better

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Sometimes I get discouraged.  One evening many months ago Jaime and I were talking and I was confiding in him that it was so, so hard to keep doing breathing treatments and therapy sessions and to feel like all that discomfort, all that effort, all that striving was doing nothing more than slowing the decline and maintaining a level of health that was so far below what I wanted it to be.  I was feeling beat down.  Jaime asked me that night what he could do to make it better.  I said, “NOTHING!”  I felt there was nothing that anyone could do to make it better.

Jaime didn’t forget our conversation.  That year for Valentine’s Day he passed over the chocolates; he ignored the cards and flowers.  Instead he fashioned a space for me in our guest room, a little sanctuary of sorts for me to do my treatments.  He found a dresser that had a drawer deep enough to store my nebulizer and a removable tray where I could keep my medications.  He punched a hole out the back so the cord could go directly into the wall and I could just slip the machine in and out of the drawer when I needed it.  He bought me a comfy chair to sit in (I had been sitting on the bathroom floor).  He got me a picture frame so I could look at a picture of Lucas (a touch more inspiring than staring at the toilet).  He purchased an iPad mini so I would have lots of fun things to do to pass the time during my treatments.

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And it is so much better.  Now when I’m doing my treatments, I remember that I am not alone.  I feel the love of my husband who helps me carry my burdens.  I remember that my heavenly Father also loves me and that I can cast my cares upon Him (Psalm 55:2).  I look at that picture of Lucas and I am willing to do whatever I can to slow the decline and maintain a level of health that, yes, is less than I wish it to be, but that still allows me to live a very full and very happy life.

A year and a half has passed since that initial conversation and Lucas has now infiltrated this space.  He joins me daily for my morning breathing treatments.  He has commandeered my iPad (notice the cushy blue case).  Sometimes he kicks me out of my comfy chair.  Sometimes he sits on the bed and watches Sesame Street or Curious George.

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Often he stands right at my side or sits on my lap and plays games.

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It’s not quite as peaceful (especially if he starts yelling “Mommy breathing treatment all done now!”) but I love the company.  His little hand on my leg, it steadies me.  It fills me with hope.  All these things make it so much better.

Statistics

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Lucas helping Abbey and I with our breathing treatments

Cystic Fibrosis is a rather complicated disease, but if you could put numbers to it, those numbers would be in the form of the FEV1.  The FEV1 is the number the doctors pay most attention to off of the routine breathing tests, because it is the best indicator of how a patient is doing lung-wise.  It best shows how the lungs are functioning, how open the airways are, how much air is available when the breather most needs it.  (The FEV1 measures how much air you can force out in one second after taking a deep breath.  This diminishes as the lungs become inflamed, scarred, or fill with mucus).

I am a person who is very motivated by good marks.  I think I did so well in school not because I loved learning so much, but because I was motivated by grades.  I always wanted to get As.  I still really, REALLY want to get an “A” when I go in for my breathing tests, but they aren’t forthcoming anymore.  That pesky little FEV1 score can make or break my day.  It’s scary to see it moving down.  If it pops up, it’s like Christmas has come early!

Really, the FEV1 is only part of the story.  What is more important, what that paper tells me or how I am feeling and what I am able to do each day?  I talk to my mom about this all the time.  She reassures me.  She tells me I am living fully and doing well.  I know she is right but I sometimes feel like a slave to that FEV1 number.

I think this is a multilayer issue for me.  For so many years I prided myself on being “normal” in spite of my CF diagnosis.  No one could ever tell I had a disease and that made me feel good; it made me feel safe.  I knew first hand what CF could be like because I watched my sister Sheri struggle.  I knew the good (yes there is good!  More on that later…), I knew the bad, I knew the ugly.  I knew I was fortunate.  I didn’t want to lose my foothold.  But a progressive lung disease is just that – progressive.  And I slipped.  I know there are a few people out there with CF that will enjoy the health I had until my mid twenties all through life, but barring a miracle or a medical breakthrough (which I hope and pray for), that is no longer my path.

Are you wondering what my FEV1 is?  I’m planning to share it with you.  But it’s hard for me.  It’s not something I’ve ever publicized. I think sharing it is a good step in helping me to not be bound by it.  It’s not an “A.”  It’s not a “B” either.  But it’s where I’m at.  I thought about waiting until my next appointment to see if it had risen at all because I’d rather share a better number……

At my last appointment it was 47%.  That means 47% of predicted.  I should be able to get out roughly 3 Liters of air in that first second but I can only get out about 1.5.  Yeah, my cystic fibrosis is not mild anymore.  But God gives me strength for today and BRIGHT HOPE for tomorrow!

 

Here I go…

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I have to admit, I am starting up this blog with a little bit of apprehension, but I’ve been encouraged by my husband to take this step and join the online writing world.  So here I am!  I started thinking about blogging recently, mostly because I’ve happened on some blogs written by other people that have inspired me.  When you have a disease or something defining in your life that makes you different than most, it is easy to feel alone.  I appreciate blogs written by other women like me: women with cystic fibrosis and more recently, CF women who are also mothers.  I would never know these women otherwise as they are scattered across the world.  Also, when I’m wrestling with various challenges, writing helps me to clarify my own thoughts and feelings.  When I’m feeling particularly bubbly and blessed, I like to share those joys with someone!  So I invite you to come along with me if you’d like, to hear about my life including its blessings, challenges, my faith, and what God is working out in me.  And I’ll probably be writing some about my boys too, the big one and the little one 🙂