The Other Side by DH

Below are some of my notes from when I recently spoke at the CF Family Forum.  It was a great day of information and encouraging stories of how people are living with CF. What an honor it was to be asked to speak at it. I didn’t change them much for this post so it may seem a little chaotic. They assigned the following four questions to me. The post is a little long as was my little speech.

Hope and Perspective

1) What do you see as the biggest challenge for a spouse of a CF patient? 

--roles and which one I should be doing – what hat to put on

-husband, cheerleader, encourager, accountability, pusher, helper, nurse, respiratory therapist, financial, house keeper, cook

--watching the person you love slowly deteriorate 

2)  What do you wish you had known from the beginning (or earlier)? 

--the progression of CF... to better know what was coming

--how daily life issues affect energy (see spoon theory from earlier post)

--how to be a good advocate for her

--available financial help programs

3) What was the hardest learning curve about the financial stressors and insurance problems? 

Insurance

--that it simply takes time 

--need for documentation, and how to track everything – developing a system that works for you and that we both can work

--don’t assume dr.s offices and hospitals don’t make mistakes on billing

--be proactive

Financial

--how to adjust living based on whether or not she is bringing in an income due to illness

--hard to budget with an ever changing monthly cost with prescriptions and such

Know which questions to ask!!!!

Be persistent.

4) How do you cope with your feelings and emotions and take care of yourself?

Practical things and Life Perspective

Accept the reality of CF – it is chronic, it is progressive, you can do everything right and she will still get worse

Practical

--support of family and friends – build a support team

--taking quiet time and getting the sleep you need

--transparency with tiffany

Philosophy of life or life perspective

--keeping a forward looking view and not letting CF control your life but realizing it does influence your life

--having the right view of CF – not becoming angry about it – realize that CF makes her who she is

--faith in God and that He is in control

--because she has placed her faith in Christ, the worst that can happen is that she die and go to heaven 

My Help

Lately, I have had much to think through.  This Psalm has been a blessing.  

My Help Comes From the Lord

121:1 I lift up my eyes to the hills.
From where does my help come?
2 My help comes from the Lord,
who made heaven and earth.

3 He will not let your foot be moved;
he who keeps you will not slumber.
4 Behold, he who keeps Israel
will neither slumber nor sleep.

5 The Lord is your keeper;
the Lord is your shade on your right hand.
6 The sun shall not strike you by day,
nor the moon by night.

7 The Lord will keep you from all evil;
he will keep your life.
8 The Lord will keep
your going out and your coming in
from this time forth and forevermore.

The Other Side by DH

A Good Day

Have you ever thought about what makes a good day? Last Saturday would have been what most would be considered a good day for me. After finishing some meetings at the college, I was able to go over to Phoenix Children’s Hospital where they were having a family day seminar for CF. I had the honor of being on a panel in the afternoon where we shared our stories and gave insights into living with CF. What a blessing it was to hear from others who were going through many of the same things that Tiffany and I have been going through as we live with CF. 

One thing that I noticed about all the CFers that talked -- They are fighters and don’t allow CF to define their life. I had the privilege of talking with a lady and her husband who is about to celebrate her 3rd year with a lung transplant. To listen to her story and talk with her husband about what they went through was an encouragement to me. To be able to talk with families afterward was also exciting as I got to share more of who Tiffany and I are and how we face life with CF. As Tiffany’s previous post points out, life with CF is hard, harder than what people know as I think is true of most chronic diseases.

So that leads me back to my first question--Have you ever thought about what makes a good day? A good day is not defined by my circumstances but is defined by the fact that my God is God and I can trust Him with my all. In that sense, every day is a good day -- but the reality is that some are harder than others.

Progressive

I don’t know what I was expecting but this was not it.  I realize that I do have a progressive disease-that means that I will die from it or complications from it. I think that I expected to just at some point to get sick and not recover from it-to go quickly.  However, this is very different.  My lungs are slowly dying.  The past two days have been very hard.  I have been off of IV’s for almost 3 weeks and I am getting sick.  Coughing up crud, tired, really struggling.  

This is that progressive part.  It is almost as if your body is holding you hostage, laughing at you, because there is not anything you can do about it.  It is very wearing physically, mentally and emotionally.  There has been times this weekend where I have struggled with just quitting-wanting to stop the fight.  Now, don’t freak out on me that is not going to happen but it is something that I have thought.  

In the quiet hours, after coughing for 1 1/2 hrs and struggling to go back to sleep, when everything aches, when you just want some moments of relief-these are the times when progressive really hits home. I feel guilty for putting my DH, my family, my friends, my coworkers through this.  Although I know that many of them have chosen to walk beside me for this journey it doesn’t make it easier.  My brother is getting married next summer and I have told DH several times that I HAVE to be at his wedding (of course, the unspoken fear is that I won’t be). Don’t worry Brother....I plan on being there!

"My flesh and my heart may fail,

but God is the strength [rock] of my heart and my portion forever."  Psalm 73:26

Friday Fill-in

*It’s bad when words are mis-spelled in a tv commercial (hmmm)

*cheesy line of the week “If ear wax was made of your voice I would totally never use a q-tip”

*I enjoy that PBS has some really good concerts on it-I just have to find them :-)

Lord, my heart will choose to say, Blessed be your name.

“And he said, “Naked I came from my mother's womb, and naked shall I return. 

The Lord gave, and the Lord has taken away; blessed be the name of the Lord.” Job 1:21

"Mom, why does she have that thing on her face?"

I am attempting to get out of the house more.  This means, of course, that the o2 comes with me.  This is a very new experience for me.  I have always been successful at “hiding” when I am not feeling well.  In fact, one of the tough things about CF is that most of the symptoms are internal.  CFers often look great on the outside.  Thus I had the benefit of often not looking sick.

However, this has changed with the fact that I now wear a nasal cannula for oxygen.  Internally, this has been a harder adjustment.  Many people in my life have been very gracious and insist that it hasn’t changed anything.  It’s hard to explain, but sometimes I feel like I need to over-compensate so that people see past the plastic tubing on my face.  I am trying to get rid of that “barrier.” When walking out of a store recently I overheard a daughter ask her mom, “Mom, why does she have that on her face?”  Or, at children’s choir rehearsal getting asked “are you okay....what is that on your face?”  It is almost easier to get the blunt honesty of children rather than the imagined questions of a look.

This has been a great reminder though that this tubing does not define me.  My CF does not define me. My circumstances do not define me.  My identity as His child is now firmly in His hands, defined and maintained by Him made possible through His grace.

Back at it...

It has been a blessing this week to get back to doing several things that I love.  

Chandler Children's Choir

Vocal Ease Voice Studio Master Class

Tri-City Baptist Church Worship Service