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

What Are We Going To Do???

Bags packed. Full tank of gas, Pringles, Jerky, Water, we were all set. My youngest and I hit the road. "Summer road trips are the best." I thought to myself with just a twinge of butterflies in my tummy. Tiny bit nervous as this time it was just the child and me. I could do it, I knew I could. My husband and I traveled all across the country together and I learned so much from him. Besides, we were only going a day's drive.

The trip went smoothly and we were making good time. The one part I was dreading was heading over Donner Summit. I had many scary memories of my husband and I going through the summit in a big rig truck. While the scenery is beautiful, we usually crossed that area when it was icy with snow. The lanes are small and the mountains steep. I calmed myself with the comfort that it was summer and I was not in a big-rig truck. I was in a 1998 Toyota.

On the last leg of crossing the summit, we were headed down a deep grade, when my car suddenly lost all acceleration. I glanced at my son who was safely buckled into the passenger seat, and then double checked to make sure that somehow we had not knocked the gear into neutral, which wasn't the case. At least I had my brakes. Coming off the hill, I made the last minute decision to pull off at an exit, which had a small ramp that went uphill. We coasted up the ramp to a stop sign. I pulled my emergency brake and turned off the car. We were up in the mountains on a tiny exit that lead to who knows where, not a person in sight. Now what? I stepped out of the car and lifted the hood. Hmmmmm. "What was I looking for?" I wondered. I luckily had cell phone reception and called the family members that I was going to visit. They were going to be about 2 hours before they could come get us. What was I going to do with my car? Oh, why did this have to happen? What would my husband tell me to do? I closed my eyes and listened to the breeze blow through the pine trees. "Husband, I wish you were here. You never did train me for this experience." I opened my eyes and caught the eye of my son, still sitting in his seat, buckled in. I knew what I needed to do...

Taking a deep breath, I called him out of the car. "What are we going to do, Mom?" He worriedly asked. "What are we going to do? What are we going to do??" I dramatically responded. He shook his head yes. "We, my child, are gonna take some pictures! Grab that camera! Look at how beautiful it is here!" I exclaimed. So that is what we did. We had the whole little place to ourselves. It was lovely.

I Think About You

                                                         

I Think About You,

About the way your hair felt running through my fingers,

Your Heart, 

 I laid my head on your chest,

I think about You,

Holding your hand,

The Blue of your eyes,

Sound of your Voice,

I think about You,

And talk to You aloud,

All of our Smiles,

Feeling You with me,

Things we still do,

I Think About You.

The Boat and The Stick

I mentioned that I was going on a little summer trip.  One of the things running through my mind was whether I should bring a teeny bit of my husband's ashes to our destination.  He used to love the area and it was a place we visited on our honeymoon.  Years before my husband was diagnosed and passed away from Pulmonary Fibrosis, we were discussing things like burial vs. cremation and our desires as far as that is concerned.  He always told me that he wanted to be cremated and since he enjoyed traveling our country very much, he also indicated all of the states he wanted his ashes spread.  I told him that was a bit inconvenient as they included practically all of the lower 48.  I remember telling him, that it's not like I would want to go on a cross-country trip after losing him and I found his wishes to be somewhat unreasonable.  He just laughed and told me to stand on a bridge and sprinkle him on a big-rig truck passing below, if that made it easier for me.  I would have never, in my right mind, think that it would be such a short time in the future that the idea of this would my reality. 

My son and I did bring a little of my hubby with us on our journey.  Sounds strange to say, but it was a couple of tablespoons.  We knew just where, if we were to do so, that we would sprinkle him.  The thing holding us back was the idea of letting him go~ even if it was just a little part of him.  The consolation I kept in my mind was that the real spirit of my husband did not lay in those ashes, but was alive and constantly with us in everything we did.  I knew my husband would have liked this.  In the same area I looked for a sign of his approval.  Within moments, I saw it.  Two pieces of driftwood.  One, in the shape of a boat and the second a very beautiful stick.  My son had been searching high and low for the perfect stick.  With the stick he drew into the sand the letters of my husband's name surrounded by a heart.  It took him more than an hour to do this as he made each letter big enough to see from the stars. 

Well, Will You Look At That!

My hubby loved classic cars.  He had an uncanny way of knowing the year, make and model of most cars that we ran across.  If there was a classic car on the road, in a field, or in our general vicinity, his sonar went up and he would be sure to locate it.

He would point them out to me and my son.  "Well, will you look at that!" He exclaimed. 

We would all crane our necks to see what he was pointing out. 

After my hubby passed away, my son continues to point them out.  He tries his best to name the model or the year it was made and when I ask him how can he tell, he says it's all in the headlights, or the grill, or the doors.  It warms my heart to see this in my son. 

Between A Rock and A Hard Place -Dan Mathis

As a person who has Pulmonary Fibrosis and is an advocate for spreading awareness of the disease, Dan Mathis shares his frustration of its impact upon his quality-of-life as well as the type of  care received from the medical community...

I hate Pulmonary Fibrosis.  Have I told y’all that?  The doctors will not operate on my hips because of the Pulmonary Fibrosis.  The pain doctor will not treat my pain with the medications it will take to help –because of the Pulmonary Fibrosis.  He says he is afraid of me because I have Pulmonary Fibrosis.  What is a person to do?  What?  Go to the ‘street drugs’ to get relief?  What?  Go ahead and go into hospice in order to get help?  What?  What?  What???  ~Dan Mathis

Dan's concern is not an isolated incident.  There are many folks who do not qualify for a double-lung transplant in order to save their lives.  Whether due to their age, other ailments, financial or logistical concerns; or all of the above.  Some, such as my hubby, decide that they would prefer to try to manage their disease and live out the remainder of their lives with the quality that they have become accustomed to.  I remember when my husband decided not to get a double-lung transplant; the patient advocacy group that was assisting us essentially explained to us that if he was not going to pursue the only viable option for survival, they would recommend hospice.  It was the right thing for them to do, although explaining this to my husband was quite difficult. 

There are so many emotions that come from the decision making process of going into hospice.  Essentially it is coming to terms that the medical community does not believe you will get better or live for more than six months.  On the other hand, one will receive all the medications it takes to be comfortable, as that is the primary goal -making the patient comfortable and meeting their current needs.  When I discussed this with my hubby, I remember telling him that just because he goes on hospice does not mean there is a time limit on his life, although it would allow him whatever he needs in order to have a good quality of life while he is with us.  Such a heart wrenching thing to think about.  Thank You, Dan, for allowing me to share this.