Not Every Pain Shows ~Cheryl Bachelor Hetrick

Cheryl Bachelor Hetrick lives with Pulmonary Fibrosis and each day cultivates the hope that eyes will be opened to what it is truly like for those who live with chronic illness.  She writes...

I posted yesterday that the pulmonary doctor was pleased with my condition at this time. It seems that some took that as a sign that I am right as rain again.  I hate to be a downer but that simply isn't the case.  I may not have another hospital stay lurking around the corner but I am still sick; sicker than I was even just a few months ago.  There is no stopping the progression of PF.  I've been blessed that my progression has been slow and I am grateful for that.

I still have lost the life I had before.  No more spending week-ends running all over the place looking for things for the house, hunting out the right paint, etc.  I don’t drive at all any more.  No more Do It Myself projects.  Week-ends are spent in the recliner recovering from working the week before.  That’s all I do all week-end is sit in the recliner reading, watching TV or sleeping.  The same thing I do after work each and every day.

I can’t remember the last time I had the energy to even go to a movie.  I miss out on weddings and birthdays and just nights out on the town.  I only get to go hear Dirk & Tim play their music maybe once a year, and I can only do that if someone can drive me home early.  There is no way I can close a club any more.  Dirk does all the shopping now because I am out of breathe and shaking before we are half way through the store.  He does all the housework except loading the dishwasher and washing my clothes.  I can still handle those chores.  I am lucky that I have a job where I can spend most of my day sitting at a desk.  A job I need because of my sanity and the need for good health insurance.  But when I do have filing or the like to do, I have to do it no more than 10-15 minutes at a time.  Then I have to stay quiet at my desk for an hour or more.  A 10 minute shower puts me back in the recliner for 30 minutes or more.  Do you have any idea how demoralizing that is or to not to be able to vacuum your living room or mop your kitchen floor or dance with your husband???  I hope not.  Because it sucks, especially if you are the kind of person who always had to “do it myself”. 

I’m not saying all this in a bid for sympathy.  I honestly don’t or need want sympathy or pity.  Those are wasted emotions to me.  All I, and others with health issues, want is -understanding.  Please don’t assume because we are able to post to Face Book that our health issues are minor.  We do things like that to try to maintain some semblance of normalcy.  It is like grasping at straws but it’s all we can do.  Don't assume because we look "good" in a photo that we couldn't be "that" sick.  Not every pain shows. 

I’m sorry if this sounds whiny to anyone.  I try not to whine.  But if I think that people don’t understand what a chronic disease has done to me, there must be others out there who feel that way, too.  My hope is that eyes will be opened to what life is really like for people (and their families) with major health issues.   With understanding comes compassion toward our struggles and acceptance of our limitations.

Thank You, Cheryl, for allowing me to share this and I admire you so for all that you do to raise awareness to this disease!  Please visit Cheryl's page, Day By Day with Pulmonary Fibrosis on FaceBook at:  http://www.facebook.com/pages/Day-by-Day-with-Pulmonary-Fibrosis/302280633161899

Standing Tall After The Fall ~Rick Brewer~

There are times in our lives when we lose balance.  With humor and spirit, Rick Brewer shares a moment when this literally happened to him.  He writes...

Well, today was the day. I had thought all along that eventually, I would trip someone with my oxygen tubing until they fell.  Today was the day, the day I tripped myself.  Those of you who have to worry about falling will know the type of fall.  It was the type that you can see everything around you as you are going down. 

You think, "What can I grab to stop myself?  Only to realize there is nothing there to grab." 

So, what to do?  Head toward a wall.  I'm in the bathroom, and was able to avoid a little table in the corner, the stool, the shower, the wastebasket, etc.  I slowly slid down the wall, and kicked the table.  I did manage, on my way down, to somehow catch a bowl of potpourri, and a glass frog that were sitting on, said table, to keep them from breaking.  I also realized while laying there looking up, "We need to clean the dust from the vent fan."

Now, the bigger problem. After checking myself over and realizing I had no serious physical injuries, I now had to get up.  I also had pass through my mind, the rodeos that used to be on ABC's Wide World of Sports.  I vividly was picturing the calf-roping with the calf laying on it's back and it's legs tied and in the air, but, I digress... Ok, for those who don't know me, I had polio.  Little use of my legs, and two, totally torn rotator cuffs, as well as wearing a cannula with 50 ft. of tubing.  My wheelchair is in the vanity area, and I am in the water closet.  I decided not to over think this.  My son, Zach is home and is in his medical training. He was able to get over here in record time.  He had this nifty little belt-like thing to help lift helpless people like me.  Oh yeah, I am not a light person. Fortunately, our neighbor was home as well, and he came over to help.  A couple of tugs, and panting, and I am up on my feet!

There was no time to thank anyone.  I had taken lasix, and had been drinking what felt by that time to be 7 pots of coffee!!  I also had to take the time to un-crimp my Oxygen hose that, by now, is screaming at me with all of it's might.  I now understand why the cat runs like hell, whenever I stand up from my wheelchair. She isn't afraid of me, she is afraid of dying in a tragic smashing accident.

Thank You, Rick for sharing your experience.  You are right, sometimes we need the help of others to regain our balance again and I hope you will leave the dust balls to others ;)  

How can we help prevent falls at home?  Creating a Fall Prevention Checklist might help, which include a few tips such as:  Be sure that you can move safely in bathroom area, and in and out of the tub or 

shower. Remove soap build-up in tub or shower on a regular basis.  Mount grab bars at the toilet, bath and shower on walls with secure reinforcements, to prevent the bars from coming loose.  

More Excellent Tips may be found at:  http://www.eldercare.gov/Eldercare.NET/Public/Resources/Brochures/docs/Preventing_Falls_Brochure_pagebypage.pdf

A Memorable Life ~Dan Mathis~

Imagine having a terminal illness and knowing your time here on this Earth is limited.  What are the things that you would want to accomplish?  For some, one of the most important things they want to do is to live each day to the fullest with their loved ones.  Creating memories that will be cherished by those who truly know us.  

Dan Mathis found himself in this situation.  He had other goals to accomplish, such as giving people with Pulmonary Fibrosis a forum where they could express their deepest emotions and still be accepted as family.  Dan founded the Pulmonary Fibrosis Spread Awareness group on Face Book and reached out to everyone who came there, giving all a safe place to vent, laugh or cry.  Even as he was doing this and struggling with the physical pain of his body, he also wanted to spend beautiful moments with his family.  

Together, Dan and his family planned a vacation and went away together.  When he returned he posted a picture of himself. Sun glimmering off of his glowing cheeks, sand at his feet, and the sweetest little grand-baby sitting on his lap. All in front of the backdrop of a bright blue sky.  When he posted this, there were many who were happy for him. Glad to see the love and happiness that he was still sharing.  Also, there were some who questioned, why did he not look as sick as he says he was?  They cast their doubts of his illness.  

Dan responded, "Wow.  The bad attitude of me going to the beach.  Let me tell you one thing, to those who say 'I thought your health is in end stage?' ~Well, I have a family that deserves to have a life and I will do anything to make their life with me memorable.  It took so much out of me and I smiled the whole time.  Now I am having repercussions from it and wouldn't have changed it for nothing.  If Pulmonary Fibrosis takes me tonight ~I am ready."

When I read this, I asked Dan permission to write something about it on my blog.  He gave me his permission.  I think his words had an impact on me as I recall that my husband felt the same way.  I remember a few of our get-a-ways after his diagnosis.  They were never easy as it takes such a great amount of preparation to go when someone is sick.  Then there were the scary butterflies in our tummy's, not fun butterfly's, but the kind that reminded us that we were truly taking his life into our hands by going somewhere.  Would he have enough oxygen, medications?  What if something went wrong?  

At the same time, I will never forget glancing over to the passenger seat and watching my husbands eyes glimmer in the reflection of the sky, streams, and mountains, all putting him in a beautiful trance.  And, I realized, what he already knew, that this may be the last time he sees such beauty.  Our World.  Soaking all of it in just one more time.  Sharing this together, He and I, our children. Nothing can ever take away the memories we created and indeed it was worth every moment. 

I also recall that no matter how ill my husband was, he was always ready to greet a visitor and told me to never turn anyone away.  When it came time for a picture to be taken, my husband always removed his oxygen.  Too proud to take photos with it on, even when that meant losing his precious breath.  Ahhhh, but this is the way he was and this is the way he wanted to be remembered.  As the shutter snapped, the photo captured light that settled into his eyes and a glow upon his cheeks.  I was ever conscious that he was dying, but yet in awe at how beautiful a man he still was....Always taking the time to create another moment of memory for someone else.  I look at our family photos and remember all the time we shared together, grateful.

Dan passed away yesterday.  It was a couple weeks after his vacation.  I can't help but think how lucky he was to feel the sand in his toes and create those memories for his family.  If there is anything I can take away from knowing these things is to keep reminding myself of what I would like to accomplish in my life.  It is simple, really, just to remember that everyday is an opportunity to connect with my loved ones and build tiny moments upon moments, filled with love.

                                                            Dan Mathis July 2013