[becton1948]

George-Richard,

Dying is an uncomfortable subject to address. Most of us think about death as a painful and prolonged process that spurs thoughts of the unknown. What happens after we’ve passed on? What will happen to my family when I’m gone?

A lot goes into living before death, and for each person, that experience is different. I’ve always wondered, “What purpose do I serve?” Is it to learn about everything I can in my lifetime, or to use my time to help others? Or am I one of many voices needing to speak out about my experiences with IPF?

I don’t want my illness to be just about me. I want it to be about so much more. It’s about my God, those who support me. It’s about my family, friends, and medical team.

I may not be able to walk or run as fast as others, but I still want to join in. I may get winded easily while talking, but I still have something to say.

Maybe my purpose is to show others how to trust God, to have compassion, to not forget that those of us with a rare or chronic illness are still here. Until my time to grace this world with my presence is over, I hope to make people feel comfortable and at ease about chronic and rare illnesses and the unknowns that go with them.

God Bless!

[becton1948]

I was diagnosed in March of 2018 and taking Esbriet.  So far I’m holding my own – O2 only on exertion and at night.  I am 75, so a transplant is currently not in my future.

[becton1948]

This is a letter I wrote to my caregivers – my IPF hasn’t progressed enough to where I am totally dependent on them.  The letter was to tell them they need to take care of themselves while trying to take care of me:

A quick word to you, my caregivers, as my degenerative disease progresses. As you know, this disease affects you, too. Just as it is important for me to maintain hope and actively engage in life, so too, it is essential to you guys.You all to some extent will be involved as the IPF progresses in my daily caregiving. This will be physically and emotionally exhausting for all of you, but I think more so for your mom/g’ma (the love of my life). Remember you need to take care of yourselves and each other as well. Build a support team of friends around you. Engage them, talk to them – don’t be afraid to share your feelings with them. Do things that are fun and enjoyable to you. Keep track of your own health. Open communication among family, friends and medical professionals will help the logistics to run more smoothly.
One gift of a degenerative disease is that it reminds us of the shortness of life and what is truly important. One of those truly important things is relationships. As much as you are able, enjoy the time God has given us together. Allow yourselves emotions like anger and fear, but also happiness, and the peace that only God can provide. Life is not just IPF!

[becton1948]

It took me a while, but I concluded that I needed to let go of the anxiousness and worry and focus on the blessing of each day God gives me – I figured out that I needed to turn it over to Him (I should have done this sooner).  I asked God to relieve my family and myself of our fears and worries and for Him to show us how to respond to this bad news, and yes, if it is His will, provide a miraculous cure. To be honest, I found it hard to say “not my will, but yours be done”. But then I realized that if I asked for His peace even if His will was not mine, it allowed me to more easily pray it – as we should in every circumstance. His overflowing peace allowed me to accept the fact that His will is always the best.

I can’t tell you that I know what His will is relative to this disease, nor can I tell you that I don’t have periods of anxiety over the situation – especially when I struggle with low O2 or can’t do something because of it, or think about what my family will go through. When I have one of those low times, I pray for peace, and remind myself to enjoy each day He gives me – do my best and give the rest to Him. In other words live for today and remember that our ending is THE beginning.

[becton1948]

My doctor prescribed off-label use of Gabapentin for my dry cough.  He prescribed one 300mg Gabapentin twice a day, and it took care of the cough in 2 to 3 days.  I take the “Gaba” everyday still, and the dry cough has never returned.  Note that as May stated above, it doesn’t help with a cough due to phlegm/congestion, but it sure took care of my dry cough.