Monday, August 1, 2011

Control and progression with cf...

A blogging cyster issued a challenge to write about my personal thoughts and experiences in dealing with CF control and progression.   I am taking up her challenge.  Hang on, it could be a bumpy, rambling, disjointed ride.  Here goes.

It concerns me when I hear about people trying to "control" their CF.  They mistakenly believe if they do everything just right, with 100% compliance, they will/should remain healthy and have little or no problems.  Because when the inevitable sickness or decline comes, they rationally have to blame themselves because after all since they were the ones in control, they messed up somewhere along the line.  In their need to control, they create the perfect set-up for discouragement and depression.  I have learned that control is an illusion and the harder one tries to gain it, the more elusive it becomes.  

I found this out when I developed generalized anxiety and panic.  It began in 8th grade and then became even more problematic in my early 20's.  I was afraid of just about everything.  Who needed aerobics--my heart raced with the slightest provocation.  It was a miserable time.  Part of what pulled me out was finally understanding that I didn't need to control everything.  I could trust in myself to handle whatever came my way.   I still experience some anxiety from time to time, but it doesn't completely derail me any more.  

Instead I have chosen to be the manager of my disease. I can influence and direct the course of my cf  by being compliant in taking my medications and in doing my breathing treatments.  I ask questions and value input.  I do what works--I don't have time for the rest.

I cringe when I hear about well meaning parents who in their need to control the outcome of their child's disease become hyper-vigilant to the detriment of their cfer.  I knew a family who posted a sign on their front door telling of their daughter's fragile medical health and the rules for entering their house.  Being confronted with that every day would not only be embarrassing but you would believe you really are fragile, a self-fulfilling prophecy.  Another mother freaked out because her pre-schooler in daycare was allowed to play in the dirt.  Didn't the workers know how dangerous dirt could be to a cfer?  Oh my.  If your cf child is in daycare, you have bigger worries than dirt, believe me.  Please go outside right now and make mud pies!  Let your kid be a kid.  A different mother raced out of a dentist's office when she found out another child there waiting had cf.  She called her clinic to see if her child needed some medication to counter-act the exposure.  Then she called the dentist's office and berated the staff for scheduling two cf families on the same day.  Unbelievable.  There could be a cf family in the same line of the grocery store--you don't know.  Take reasonable precautions when needed then just live life.  

Sometimes I feel like my cf experience is marginalized since I must have a "mild case" of cf.   I carry the two most common mutations of the cf gene so I am not some cf freak of nature.  I have had cf symptoms and challenges since birth.  I am so grateful my breathing problems developed slowly compared to many cystics; I don't take that blessing lightly.   However, when I took 16 pills with each meal and still spent time doubled up in a ball with stomach cramps, it didn't feel like a mild case.  When I was given milk and molasses enemas (yes, that was the protocol back then) to clear bowel blocks, it didn't feel like a mild case.   When getting perfect and honorable attendance certificates like your sisters was an impossible dream, it didn't feel like a mild case.  (In fact, I missed so many days of  elementary school some years I could have been held back had I not been a good student.)  When my boss took me aside to tell me people have complained about my coughing (had a summer job at a sandwich shop) and I was humiliated, it didn't feel like a mild case.  When my OB told me at the conclusion of my pregnancy that he didn't know if me or my child would be alive at the end, it didn't feel like a mild case.   When I wondered if I would live to see my son go to school, be a boy scout, graduate, or grow to adulthood, it didn't feel like a mild case.  When you honestly can't remember the last time you felt good, it doesn't feel like a mild case.  And now that I have coughing fits that take my oxygen sats into the 70's while being on oxygen and wondering if I'll ever catch my breath again, it absolutely doesn't feel like a mild case to me.  Whenever and however the cf challenges come, they are remarkably similar with the only difference being the timing. 

One thing about being blessed in beating the odds is the mistaken idea that you will always continue to beat them.  After all, you must be doing something right cuz it has worked out so far.  It is a humbling and scary experience to finally realize that despite your best efforts, this crummy disease is winning.  Progression is inevitable.  Taunting, it seems to say, "thought you were special, huh--think again cyster!"  I'm still coming to grips with that and am more successful some days than others.  I believe our experiences are tailored so we can create maximum growth within ourselves.  Growing hurts.  But I will continue to fight.

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.


  1. You are amazing Sherri! You are the only person I know with cf, so I have nothing to compare you to besides what I have read and seen on tv. Maybe you do have a "mild" case, after all, look at how long you have lived and all that you have accomplished, but that doesn't minimize your experiences. You were given a terrible prognosis at birth, and have beat the odds by a long shot. I have always looked up to you and admired the way you keep fighting and refuse to give in to your disease. Keep up the good work! Love you!

  2. You were the first cf-er I ever knew, and learned so much by watching you. I remember seeing your son's college graduation pictures and almost crying--you didn't know when he was born whether you'd personally see that day. You're an inspiration.

    (And I, for one, am glad you've continued to fight and fight.)

  3. Sherri, you amaze me! I LOVE your attitude and your ability to admit difficulties while keeping a great perspective. I have always admired your outlook on life! Thanks for sharing your heart. I have always believed that the more we share our lives, the more we connect with each other and truly understand. My motto: "When information is lacking, all judgment is hazardous." Your sharing will help others to understand, with or without cf! Thanks!

  4. My husband is a CFer and has a "mild case" as well. We have adopted two boys because of the rate of infertility in CF men. Our kids have truly been a blessing and we know they were meant to come to us. Warren is such a good dad. He gets the coughing fits. He clears his throat every time he walks up the stairs to our front door. (A clear sign that Daddy's home). He has to have oxygen when in the mountains, otherwise he gets headaches. And yes, he's had an enema or two in his time. In fact, when we were dating he had to go to the hospital because of a blockage. Anyway, I thank you for writing this post. Much of the time I forget the disease and what my husband goes through on a daily basis and just see the man I love behind it all. I think I needed a reminder that he does struggle sometimes, even if he rarely says anything about it.

  5. I can relate to the control issue. You are exactly right, in our need to control every aspect of our lives, that is an invitation for anxiety, discouragement and depression. I have definitely had to learn to let go of some things in my life so I can invite peace. You are an inspiration. I am so glad we are able to get to know each other through our blogging. Thank you for helping me understand more about CF and the experiences you are going through. I love you Sherri!