Wednesday, October 20, 2010

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? 

--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

--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

--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 

3 Response to The Other Side by DH

October 25, 2010 at 9:39 PM

Hey Tiffany-
This is Sandie Bandimere, I am currently taking microbiology and doing a research paper on phage therapy. CF and the bacteria you fight was mentioned in a video on youtube. This therapy has been around since the 1930s and used in Russia and I believe studies are being done in Texas. I realize that this is not a cure for CF by any means but it seems like a helpful weapon in some part of the disease by killing the harmful bacteria while keeping your flora intact. You may already have heard of this but I felt lead to email the video to you. God often brings you to mind and recently your mom gave me your blog address so now I can pray more specific for you.

November 23, 2010 at 1:08 PM

David, Thank you for sharing your experiences and thoughts at the conference! You were very uplifting and honest and I appreciate you taking the time to be at the conference!


November 27, 2010 at 5:23 PM

Thanks Jennifer -- it really was an honor to speak at it. We have so much to learn from each other. I think I spent almost an hour talking with many about CF and especially the transplant process. I hope things are going well for you guys. DH