Friends

What does a friend mean to you?  Look at the person in this picture.  Soft brown eyes, mischievous smile, a go getter look on her face.  She is a mother.  A fun mom who gets on the level of her teen, a daughter that counts on her and loves her so. Shawna has Pulmonary Fibrosis.  She loves laughing, helping her friends smile, her baby dogs, her beautiful daughter, music, the beach, crocheting, geeking out and life.

Since my husband was diagnosed with this disease at age 49 and passed away from it in 2011, I know this is nothing to play with.  There are many (as many as breast cancer) that pass away from it every year in the United States.  Health care is difficult, even when there is is cure, because of finances many cannot afford to live.  In this case, the only cure, and it is not guaranteed, is a lung transplant.

I have been blessed to know Shawna, and now, she has made the huge decision to pursue this operation.  It takes a lot.  Bravery, Acceptance, Flexibility, and Finance.  Let's not forget Hope.  Can you imagine, putting your whole life out there for everyone to see, with the hopes of raising some money just so you can, live, Breathe?
https://www.gofundme.com/shawna-fetterolf-medical-fund?fbclid=IwAR3VyHnYdxrxNbvoyeqSkv_wGFyGjPHqF3q9SLfY-2ACRuUlXFtvdACo9e8https://www.gofundme.com/shawna-fetterolf-medical-fund?fbclid=IwAR1_RaAIb2INj5-0-ag769y6DJjxN47YG5bF_ju7P880cSItd4aAQEzoPn8

Since You've Been Gone~ 5 Years

Well, Honey, here we are at the 5 year mark since you passed away.  It is just you, me, and time here to commemorate this occasion.  Not sure what to do.  A part of me wishes we could raise our glasses and make a toast.  Maybe to wish each other some form of congratulation.  It really should be that way.  It may sound strange, us, clinking glasses to your leaving this world.  All I know is, I was able to survive thus far, and that has got to be worth something…

I mean, it hasn’t been easy.  Trying to embrace life became my own battle of survival.  I don’t think I am all the way there yet.  Not sure anyone gets “all the way there” in this world.  But, I have come a long way, went out on a limb or two and took some chances.  I learned to laugh in rough situations.  Began to think about my future and make decisions for me. 

As you already know, I tried dating this last year.  Only one person, and you know that took a lot for me as I have not been with anyone since you.  It was, shall I say, interesting?  I didn’t stay closed off and I opened my heart, so I am proud of me for that.  It was nice to feel pretty in someone’s eyes again. 

Still, I will never forget your eyes.  How blue and sparkly they were, the way I could see your love for me within them.  So far, Baby, you have been the best man that I have known.  Such a stand up person.  I don’t overly romanticize our love, because I also remember the look in your eyes all those times I annoyed you as well.  I still wish you were here.  I still draw hearts on my misty bathroom mirror for you.  This morning I saw the snow fall, in big heavy flakes, and my heart went to thoughts of you.

Everything I do, from raising the children, to taking care of our home and even opening my heart, I still feel that you are my confidant.  You are the person who really knows what’s going on and what it takes for me to do these things.  I believe that you help guide me.  Thank You for that.  Even though you died, I know you never truly left me. 

Let’s raise our glasses, Baby, and make a toast.  First, To Life~ which brought us together, what an amazing thing life is!   In its complete beauty that people and their generous spirits can impact the hearts of so many others.    To Us, My Darling~ and all the things we have accomplished and are still working towards no matter how simple, profound, easy, or difficult.  And Finally, To You~ for guiding me along, never abandoning me, and to your beautiful blue eyes.  

Until we meet again, my love,

~Breathing

L O V E

"If you are not too long, I will wait here for you all my life."

Oscar Wilde

Dear Darling, Happy Valentine's Day.  It has been three years and two months since I have kissed you.  I miss you, Babe.  I dream of you often.  As the years have passed~ Spring, Summer, Autumn and Winter continue to flow as scheduled.  The children are growing, fine young people.  Our home, still safe and comforting.  The river so surreal, a beautiful gift everyday.  Sunrise and sunsets, with birds flying and making sounds.  The fish jumping upon waves of diamonds.  Clouds, kissed by light, whisper and beckon .  

The Stars, though, as beautiful as they are, To me, do not shine as brightly.  However, the Moon, is as mystical and glowing~ as ever before.  Blooming and ever-changing, like a Rose.  

I could go on and on.  Words really can't explain the transformations that occur moment by moment in the daily life.  For You, words do not have to.  You penetrate my heart, existing in all that my senses allow. ~~~Breathing~~~

“There is a time for departure, even when there is no certain place to go.” 

Tennessee William

****Hello, this is Breathing, I just wanted to Thank You for all the support you have given to Pulmonary Fibrosis, as well as me.  My 'counter' indicates 13,208 people have come to my blog, from many different countries.  I hope our family's experience has helped to raise awareness.  I do know this blog has helped me through such a difficult time.  I have shared with you our experience and have never held back, because most of this I typed in 'real-time'.  Now, I have transformed a bit since my husband's passing.  Not too much, but just enough to somehow realize that I have many thoughts that are better realized in my own time.  I will not post as much here, but anything that seems newsworthy to our cause will not be ignored.  Thank You my beautiful friends.  You show support just by coming here and reading this:

The word "pulmonary" means “lung” and the word "fibrosis" means scar tissue – similar to scars that you may have on your skin from an old injury or surgery. So, in its simplest sense, pulmonary fibrosis (PF) means scarring in the lungs. But, pulmonary fibrosis is more serious than just having a scar in your lung. In PF, the scar tissue builds up in the walls of the air sacs of the lungs, and eventually the scar tissue makes it hard for oxygen to get into your blood. Low oxygen levels (and the stiff scar tissue itself) can cause you to feel short of breath, particularly when walking and exercising.

Also, pulmonary fibrosis isn’t just one disease. It is a family of more than 200 different lung diseases that all look very much alike (see “Causes and Symptoms” below). The PF family of lung diseases falls into an even larger group of diseases called the “interstitial lung diseases.” Some interstitial lung diseases don't include scar tissue. When an interstitial lung disease includes scar tissue in the lung, we call it pulmonary fibrosis.

The most common symptoms of PF are cough and shortness of breath. Symptoms may be mild or even absent early in the disease process. As the lungs develop more scar tissue, symptoms worsen. Shortness of breath initially occurs with exercise, but as the disease progresses patients may become breathless while taking part in everyday activities, such as showering, getting dressed, speaking on the phone, or even eating.

Due to a lack of oxygen in the blood, some people with idiopathic pulmonary fibrosis may also have “clubbing” of the fingertips. Clubbing is a thickening of the flesh under the fingernails, causing the nails to curve downward. It is not specific to IPF and occurs in other diseases of the lungs, heart, and liver, and can also be present at birth.

Other common symptoms of pulmonary fibrosis include:

• Chronic dry, hacking cough
• Fatigue and weakness
• Discomfort in the chest
• Loss of appetite
• Unexplained weight loss

The Pulmonary Fibrosis Foundation is here to help you understand what it means to have pulmonary fibrosis. You can always reach us through our Patient Communication Center at 844.Talk.PFF or by email at pcc@pulmonaryfibrosis.org.

~~~~For my Baby, On Valentine's Day~~~~

"FIELDS OF GOLD"

You'll remember me when the west wind moves
Upon the fields of barley
You'll forget the sun in his jealous sky
As we walk in fields of gold

So she took her love
For to gaze awhile
Upon the fields of barley
In his arms she fell as her hair came down
Among the fields of gold

Will you stay with me, will you be my love
Among the fields of barley
We'll forget the sun in his jealous sky
As we lie in fields of gold

See the west wind move like a lover so
Upon the fields of barley
Feel her body rise when you kiss her mouth
Among the fields of gold
I never made promises lightly
And there have been some that I've broken
But I swear in the days still left
We'll walk in fields of gold
We'll walk in fields of gold

Many years have passed since those summer days
Among the fields of barley
See the children run as the sun goes down
Among the fields of gold
You'll remember me when the west wind moves
Upon the fields of barley
You can tell the sun in his jealous sky
When we walked in fields of gold
When we walked in fields of gold
When we walked in fields of gold

What Would We Do Without Support?

I wonder where I would be without finding the support of someone who understands?  ~Breathing

Find your support group by clicking the link below.  

Support Groups / Pulmonary Fibrosis Foundation

Don't have one in your area?  Contact the Pulmonary Fibrosis Foundation and find out how to get started.  There are also many groups provided online.

O2

What is Pulmonary Fibrosis? Via; Pulmonary Fibrosis Foundation

Idiopathic Pulmonary Fibrosis~ A beautiful video~ via; YouTube

Blue it Up or Pay it Up Blue Monday Fats Domino~ via; YouTube

September 2014 Pulmonary Fibrosis Awareness

~~September is Pulmonary Fibrosis Awareness month. If you enjoy 'Breathing' the page or the actual, literal term, please join me in helping to spread awareness for this deadly disease that steals the breath of people~ young, old, and in between. There is no cure for this terminal illness and very little funding to find a cure. Although each year 40,000 people die from Pulmonary Fibrosis in the U.S. alone, many people have not heard of this disease. For more information on how you can help, please visit:http://www.pulmonaryfibrosis.org/ ~or~ http://www.coalitionforpf.org/

Every Breath Counts~ Idiopathic Pulmonary Fibrosis- Discovery Channel- June 21st- 8:00 am ET/PT

I can't tell you how excited I am to see this documentary, Every Breath Counts~ Idiopathic Pulmonary Fibrosis on the Discovery Channel- June 21st- 8:00 am ET/PT. 

Finally, an opportunity for others to learn about this disease.  Despite the many lives it affects, it is still relatively unknown.  People who suffer from this disease, as well as their family members, desperately want to live.  Many also want awareness and general understanding of what they have to go through. In this documentary is a little piece of all of our stories. 

I lost my beautiful husband to this disease and as I watched the trailer to this film, for a brief moment, I felt as though I am watching something that is affecting someone else.  It wasn't us- this wasn't our family....  But, it was us.  This was our family's story.  My family lost a father and husband to this disease and I can never hold his hand in mine again.   

When I think about the tremendous impact of this experience being multiplied by all the others who are still being diagnosed, I know that every bit of awareness is necessary.  Even if you have never heard of IPF, do try to watch this and discuss it with a friend. You never know how that one action might help to find a cure.  

With Love,

 ~Breathing

To watch a preview, Click:  http://everybreathcountsfilm.com/

Since you have been gone~ 2 years, 4 months

It is Spring once more, Babe.  This year I have been much better about pulling my head out from the covers and enjoying going outside.  It still was a struggle to see that a new season has come upon us and you are not here, physically to share it with.  Sometimes, I think it was because you passed away in December, two-weeks before Christmas, and I tend to stay in that space too long.  -The space in which it is cold outside and the shortness of the day descends upon me like a shadowy cloak.  I feel invisible during that season.  The feeling is familiar and reassuring, but then, like a surprise, a new season gradually comes upon stretching sunlight into my world. Rather than hide reluctantly from it, as my previous tendency has been, I realize that it will still come and that time will move forward.   

Not a day goes by that I do not speak to you (as you know) and most of the time I hope you can hear me. The rest of the time, I am not so sure because you know I can be long winded and sometimes tend to ramble.  I think you might even know when I am going to do that before I do.  I see the signs you send me, especially all the birds, and I also feel the way you still support me and there are times I really do sense a larger, overall feeling of glowing love with the intensity that can only be from you.  I also think about the year-long period that you were sick.  The heart-breaking moments when you struggled and there was nothing I could do.  

I think about the moments that I used to step out onto the balcony and look at the stars and think that this could not be happening and I would wish with all my might that something might turn around the progression of Pulmonary Fibrosis within your body.  At that time, I also had a sense that what I was praying for was bigger than you and I, almost like I wanted to re-write the stars themselves.  

I stay involved with the Pulmonary Fibrosis community and I have to say, since you have been gone, there have been so many new names and each person has such an individual story that at times I wonder if our individual story has made any kind of a difference at all.  But then, I realize all of our stories, collectively, create's one large entity of its own.  Still, there is not a cure for the disease, although it seems as though there is more conversation regarding a variety of treatments as well as possible links as to why this disease occurs in some people.  I know you always wondered what caused it for you. 

 It even scared your best friend and co-worker enough that he, himself, went and had a CT scan while you were ill. He was afraid it was something environmental that he may have been exposed to as well.  He showed no signs of it.  Of course, he never told you that, but he let me know about the ways your illness affected him, shortly after your funeral.  Speaking of friends, I have to say that there are so many wonderful people who, unfortunately, have become familiar with Pulmonary Fibrosis, either by having it themselves, or through losing a family member to it.  I feel honored to know some of these people and am truly amazed at the support we feel for one another.  

Home is going well.  I planted 4 lilac bushes along our west fence-line and 10 more are due to arrive, soon. It was one of your favorite plants and I won't forget that one time we were sitting at our favorite hamburger shop and you were talking about the Lilac because there were a whole bunch outside.  You were saying how much you enjoyed the smell of them during spring and as you were talking, a really large gust of wind started up outside the window and the Lilacs started to lose petals from their bloom.  It looked like it was snowing Lilac.  That was right about when you wanted to discuss getting married at that exact hamburger shop!  That makes me giggle.  I still go there, but I am glad we found our own perfect spot for our wedding. 

 I think a lot about our wedding, too.  That was a perfect day ~always.  I see your face, the way it looked when I was walking down the aisle toward you.  I know the bride is supposed to be glowing, but you really had a light emulating from you and it made me want to run up the aisle to join you!  I had to pace myself.  I also remember how you got Strawberry Lace cake on the top of my wedding dress because you tried to shove the wedding cake into my face.  Not cool!

Speaking of Strawberries, I planted a whole strawberry patch!  All I could think about the whole time is how much you would have loved if I did that years ago.  We now have six, good sized rows.  I really do feel you guiding me.  It was amazing because about 3 weeks back I kept posting pictures of strawberry stuff on Breathing's Face Book page and that same week at my orthodontist appointment, the assistant and I started talking gardening and she mentioned that she is going to thin out her strawberry patch.  I said, "I'll take them!!!"  and Viola! We have baby strawberries!  

It has really been a Godsend.  Because of the strawberries, and the preparation thereof, I have been wearing my gardening hat at 8:am in the morning.  It feels good.  It feels good on the outside and on the inside.  To be out there, not caring what anyone thinks, and why should I?  I am doing what you and I loved doing together.  Boy, after losing you, I had the hardest time carrying on working in the yard because you and I spent most of our free time together doing it together.  We found it so beautiful and it almost hurt to do it without you.  The same goes for traveling.  Everywhere I went, I remembered everything we ever saw together.  And, we put on a lot of miles with each other.  When I do these things now, I feel it is when I am closest to you.  

Thank Goodness for Spring.  It literally has come to save me.  I love you so much!  ~And I will see you tomorrow in the garden.  

~Breathing

Rare Disease Day~ February 28, 2014

I will never forget the day my husband and I walked into our family doctor's office for what we thought was allergies he had developed.  Our doctor listened to his symptoms, and sent us down the hall for an X-Ray.  Back in the room we waited about 15 minutes for the doctor to come back and tell us what he thinks is the problem.  I remember looking at my husband, who had normally been so strong and fit, and thinking how vulnerable he looked sitting in his chair.  At 49 years old, he had rarely had the need to ever go to the doctors, and with such slight, but persistent symptoms, we just thought it would be a good idea to go in and get him some allergy meds.  The fact he rarely ever had the need to go into the doctor is why he looked so vulnerable.  It was just plain uncomfortable for him to be there in the first hand.  

I squeezed his hand and gave him a little wink and told him it is nothing to fret about and everything was going to be okay.  I was sure of it.  Soon the doctor entered the room holding the X-Rays of my husband's lungs in his hand.  As he whisked the door open, I will never forget the very first words he said to us. 

 With a big smile on his face he said, "Good news~ it's not cancer!"  

Relief swept over us as he told us what he thought it was~ Pulmonary Fibrosis.  He then sent us to get a CAT Scan to confirm this and sent us on our way home with a business card and appointment to a local Pulmonologist.  On the way home, I told my husband, I would Google the disease for him and we both felt assured based on the doctors presentation, that it was nothing too serious.  

We couldn't have been more wrong.  As I began to Google the information, I found dryly written medical documents that provided some information.  But, I could read between the lines.  This is a very serious, life threatening disease.  In some aspects, I slowly began to yearn for the doctor to have said it was cancer.  That is a pretty horrible thing to wish for, although I could not help it.  It seemed that there were more treatments,  information, and support available for cancer than there was for Idiopathic Pulmonary Fibrosis.

Without knowing very much, I resolved to start writing about our personal experience.  At that time it was solely for the idea that if, unfortunately, another person was diagnosed with my husband's disease and they Googled its name, that there would be more of a human aspect behind the diagnosis.  

Today is Rare Disease Day and the idea behind this project is similar to my initial efforts.  To raise awareness and connect those who have a disease that is considered rare and may not receive the support and information that comes with a better known disease.  

From their website the classify a rare disease as:

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.

• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.

This year, the Rare Disease Day theme is CARE.  

Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and millions and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone.

Please give their website a visit and show of support!

http://www.rarediseaseday.org/

We Are Only Human by Adrian Glyn Rosser

 "I think the one thing that we all forget is we are only human and we get used to rushing about doing this that and the other and we cope with this daily x then some little disease comes along like IPF and bang we have to stop and evaluate our lives x nobody explains that you might not be able to do the garden anymore or it takes twice as long to do the simple things like getting dressed going to the toilet and shopping x so if I can offer any advice to all the new ones who have just had this diagnosed don't be too hard on yourselves you still have a brain a heart and feelings it's just the Lamborghini engine has been replaced with a moped x"

~  Adrian Glyn Rosser

**Thank You, Adrian, for sharing.  It is true that it is so diffucult for the brain to follow what is going on with the body.  Be patient, gentle and caring with yourself.  ~Breathing

Care Giving For Yourself

It was in October that my husband was diagnosed with Pulmonary Fibrosis.  Looking back at the span of his diseases progression, I realize that at that initial point the impact of the disease was primarily emotional.  Physically, the only way he was diminished was by a slight cough which sounded like he was clearing his throat.  In all other ways, physically he seemed fine.  By December the following year he had passed away from this disease.  He remained active up until the two months prior to his passing, at which point fatigue seemed to overcome him and he became weaker and weaker.  

In the October of his diagnosis, I was physically fine, too.  We both were just two normal people.  Very active and seemed to have a beautiful life ahead of us.  I was his caretaker, confidant and friend.  The initial point of his being diagnosed, it was primarily emotional for me as well.  As he progressed in his illness, I progressed in my level of care for him.  Taking care of my beautiful husband has been the most profound and rewarding experience that I have ever had.  It has also been the most difficult.

Have you heard that over long periods of time spouses start to look like one another?  Or perhaps, an owner of a dog will start to take on a resemblance of their dog?  I think it is because we grow close to the souls we love.  We empathize.  If they are happy we are happy, and if they are hurt, we are hurt.  

When someone we love feels ill, we feel ill too.  If they cannot catch their breath, we feel light headed.  If they are scared of what the future holds, we are scared.  But, here is the catch....   If we are a caregiver to that person, then in that moment, we cannot just collapse, we have to swallow it down and get it together.  After all, logically, we are not the ones that are sick, right?  Furthermore, the person that you would normally run to when you are not well, cannot deal with or accept what you may be going through.  As a caretaker, it is a scary place to be to know that there is no longer anyone left to run to.

There are moments in care giving, that when the patients back is turned that tears begin to stroll down your face.  Or, when you are sitting with them and telling them words of love, that your heart feels gripped with fear and dread.  When your partner is sleeping and you listen to the rise and fall of their breath and you lay awake, sick inside.  

When a loved one passes away, people tell you that their suffering is over.  But, you are still here.  Is your suffering over?  

When you advocate for the disease, you meet others who have the illness your spouse or loved one had.  The disease that you witnessed first hand.  The patients will tell you that because you are just a caretaker that you could never understand the frustrations of having the disease first-hand.  But, you do not say anything because you do understand.  You also understand what it is also like to see it through to the full progression.  Past the point that many patients are aware of.  You swallow this down.  Meanwhile, your husband or loved one is gone.  

As I mentioned, it was in December, almost two years ago my husband passed away.  It gets cold in the winter here.  During that time, I spent most of my time in a blanket.  My primary source of socialization, sitting at my computer.  Dark circles under the eyes, but, always putting happy-faced icons at the end of my sentences.  Everyday, a struggle just to get through.  Time passed, not in sections, but by minute.  If I could just get through the next minute, and the next...  Then, something needs tending.  I tend to it.  I feel glad I did and wait for the next minute.  Then another something needs my attention, and it goes round and round.  Until, slowly I notice what needs attention before hand.  Somewhere along the line, counting time by minutes, turned into measured days and I realized that it was time to turn my attention to me.  

Eventually, I started to see the sunlight.  I almost felt guilty about that.  At first it hurt my eyes, but then it felt good on my skin.   I began to feel proud that I had made it through and continued to take care of what needed tending.  I am surviving.  I am to the point that I have realized that this is not enough.  I have realized that I am not the one who died.  I am still alive.  I still have a purpose in my life and I want to do more than just survive.  I have also realized that Pulmonary Fibrosis has made me sick.  I had forgotten myself, physically and emotionally.  As my husband became more ill, so did I.  As he began to let go of life, so did I.  When he died, I did not.

I have to Give Care to myself now.

Global Pulmonary Fibrosis Awareness Day *Labor of Love by ~Jamie Messer

Beautiful labor of love for Global Pulmonary Fibrosis Awareness Day by Jamie Messer!

Please take the time to watch! 

Love, 

~Breathing

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

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

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.