Saturday, May 16, 2015

Battles – CF Awareness – May 16

This is a picture of Mike with his favorite nurse Erin. This a picture Mike
would allow you to see. There is so much more that hasn't been shown. I share
this now to help people understand what CF really is.
May is national CF Awareness month. I've been pretty quiet on the subject. It is hard for me to talk or type about it. 

Daily treatments. Hours upon hours. This machine was a blessing and
no more pounding on Mike's chest. It gave him independence.
I thought there would be a cure by now. 

Mike fought this battle hard for 31 years. There were many battles. Each one with its own set of challenges. 

He lost the ultimate battle – but Mike won the war.

One year ago today Mike wrote this:
A routine port placement became life threatening when
his lung was nicked and collapsed. No more veins
available on his right side. Would this port hold?
I've been thinking a lot about what to type. It's been 15 days since I was last in the hospital and now I'm on home ivs for a week. Then another 2 weeks in the hospital. Pain is all the time. On oxygen all day every day. I’m not righting this as a poor me but to show people what they don't see when they look at me. It's CF awareness month and if you are not aware u wouldn't know why u should give. It’s to help some1 have a better breath. Please take the time to look it up and help so many ppl. Thank u for reading this.

Thinking back to the suffering my son endured is almost unbearable.

So many weeks spent in the hospital in isolation – so many alone. Years of his life inside a hospital room. On a hospital bed.

Drugs, drugs and more drugs.
Side effects that would make a chemo patient cringe. The knowledge that the only true end to it will be death. No remission. No cure.

Constant pain.

Constant annoying sinus drainage – sore throats, uncontrolled coughing. Interrupted sleep. Chronic fatigue.
Taken after his lung collapsed in 2007. Mike was at his healthiest. You
can see how thin he was. Again, this was his BEST,

Almost constant hunger, diarrhea, rectal prolapses (these are excruciatingly painful). Feeding tubes and nausea from the formulas that are meant to be the remedy.  

Testing – horrible, embarrassing, degrading, PAINFUL testing.

Patience – enduring all the doctor and nurses who have their agendas. Well-meaning but though to endure over and over and over again. Year after year for 31 years.

December 2013. Intubated. Only God's grace gave
all of us the extra year with Mike.
The constant threat of death and separation.

Invasion of privacy.

Lack of choices.

Judgement from others – well-meaning or not – some folks feel it is there right to verbally articulate those judgments rather than keep them to themselves. 

Insurance nightmares, keeping track of all the appointments.

Daily compliance with airway clearance that takes hours everyday. 
The GUILT when a treatment is missed.

The constant psychological warfare – am I doing enough? Am I getting sicker because I’m not doing more? Are people judging me? I’m so tired. I just want to have some fun too. Does it all have to be about CF? How long will I live? Is this my last hospitalization? Am I dying? If I make a new friend am I going to have to explain all this? If I do try will they pass judgement and be one more person I have to fight for understanding? Will this bless me or is this just one more thing I will need to endure?

The loneliness – no one understands what this chronic illness is like. Even other CFers. Some don’t have it as bad as me and they strut around like they are so much better. Like somehow they can control this disease and it is only because I’m not doing something that I’m declining.

Financial pressure – there never seems to be enough money. Will insurance drop me? I want to buy that part for my bike and the doctor says I need a new medicine. Will CF take everything? How can I manage it all? How long will this continue?

CF was a battle Mike fought every day of his life.

Like all of us he fought other battles and made choices. We all have battles to face. Some are worthy and some are worthless. I’ll have more to say about this another time.

Holidays and birthdays spent in the hospital.
He fought with everything in him. He made the best of a really crappy situation. He lived his life fully with the circumstances he was given. He picked himself up time and time again and pressed on. He had some good friends and family that helped him on his journey.

I know, like my son Mike, I will win the war. I know this because Jesus won the ultimate war for me. Because He lives I too will live eternally and in that paradise I will be reunited with my son. This I believe with all my heart.

If you are so blessed and can donate money to help this fight against Cystic Fibrosis we would appreciate your support. It is a terrible battle that so many children and young adults are fighting.

Thank you for considering to donate to CF. 
As Mike said above “It will help someone have a better breath.”
Diabetes - another side effect of CF. Daily monitoring and shots.
I probably shouldn't have distracted him while he was doing this.

Writing this post is so much more difficult than I thought it would be. I guess that is why I have procrastinated this long. My family and friends know how hard we fought this battle. We raised so much money and a cure was not to be for Mike. I can hardly look at an article about CF right now. For us it is too late. But please, there are so many beautiful people out there who need our help. Please continue to support CF. CF awareness was so important to Mike. He walked that fine line of not wanting pity but wanting people to understand how horrific this disease can be. Please give. In honor of Mike and all those fighting this battle. Thank you.

To paraphrase a quote from Mike: 
May is CF awareness month.
I have My son lived with CF and I am very aware. 

Yes I wrote that correctly. My son lived with CF. You don't die with CF - you live with it. Please help us spread CF awareness. Share this or a story you have. We won't stop until CF stands for CURE FOUND and no other human being has to live with this disease. To find out more about CF visit. Thank you!

Blessings to you. Love, love, love!

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