Tuesday, December 31, 2013

The Last Sunset~ New Year's Eve 2013

Babe, I saw the glow of the sunset coming through the window tonight.  I was able to catch this picture. It wasn't until after I took it that I realized it would be the last sunset of 2013.  Our little family is safe under one roof tonight.  This feels like the biggest, warmest gift that I could ask for.  I look back at our year and recall so many beautiful moments, just as I look back at our life together, and my mind is flooded with so many strokes of beauty.  Big or small, all of these moments have touched my heart.  They literally changed my life and in some ways even my future, as I know, now, to always take the time to slow down, almost remove myself ~for one moment, and take a mental snap-shot of a precious slice of time and space.  I carry these snap-shots in my heart and they have layered upon each other, cascading like a waterfall within my mind. As I collect these treasures in my heart, I see you moving in each moment. One day, even if I have nothing, I will still have this when I close my eyes.  I love you with all my heart.  ~Breathing

Friday, December 20, 2013

First Cut Is The Deepest

I was sitting in the car with a song on the radio.  Rod Stewart's, First Cut Is The Deepest.  The lyrics and guitar just sang into my heart as I drove along the highway.  Empty banks of snow glowed along each side of the road and blue mountains glimmered against the sun.  Passing the big rigs, I adjusted my glasses.  I was in the moment and for sure, it would not be right if anyone noticed tears streaming down my face.  Ahhhhh, I miss my husband so much.  I really can't explain or put into words my feelings, even in that moment.  I missed him doing the driving.  Me, sitting in the passanger side, and always my hand on his leg, or his on mine.  I know he would be wearing his blue jeans.  Tiny, blonde hairs glimmering on his wrist and arms as he handles the steering wheel.  I could almost see him turn to me and smile.  An open mouthed smile, the kind one does when they have no self-consciousness.  He had a very tiny, little over-bite.  Only noticable, when he tilted his head back and smiled this way.  I loved it and always wanted to grab his face and kiss it.  He would be wearing his little round glasses while driving and that, too, drove me crazy.  I was crazy about him.  

As I drive down the road thinking of these things, I am still crazy about him.  I look around.  To the snow banks and rolling hills, as if I could see him or find him there.  But, I can only feel him in my heart and this drives me more crazy.  It feels good though.  To be alone in the car and able to let my feelings out.  I still wish he was sitting next to me.  I listen to the words of the song....

"I would have given you all of my heart
But there's someone who’s torn it apart
And she's taken just all that I had
But if you want I'll try to love again
Baby I'll try to love again but I know

The first cut is the deepest
Baby I know the first cut is the deepest
But when it come to being lucky she's cursed
When it come to loving me she's the worst
I still want you by my side
Just to help me dry the tears that I’ve cried
And I’m sure going to give you a try
And if you want I'll try to love again
Baby I'll try to love again but I know....."

I realized what I already knew.  That love is complicated.  My husband felt the way of this song when he met me.  His heart had been broken by his first, true love.  He was grieving over the end of that relationship when he met me.  He still wanted me by his side, and if I wanted, he would try to love again.  We were together many years and created a life.  He was my one and only.  I was and am still, head over heels for him. Sometimes I wonder if, when he tried to love again, did he?  But, then I see him smiling at me, in his blue-jeans......

~~First Cut Is The Deepest~~  Credits:  Songwriters: GERMAIN, BRAD / KNICKLE, ADAM / TWEEDLE, RYAN / SHIELDS, SCOTT
(cat stevens)

Monday, December 9, 2013

That Obnoxious Phrase~ SOB

Written by: LaVerne Wilson
One of the ways I cope with my IPF is by making fun of myself and my quirks. I posted this on my Facebook page today, and have decided to share it here. Maybe somebody will find a smile or chuckle in it...

A year ago I had a heart valve replaced.
But there was another big problem I faced,
When I got on a treadmill to take a walk
I found that didn't have enough air to talk.

We got to a doctor, his name was Chisti,
The sign on his door said “Pulmonary”.
He looked me all over to give diagnosis,
And came back with a bad word: “ Fibrosis”.

That came as a shock of course, but as I looked down
On his worksheet, my face sure showed a frown.
'Cause on that paper, a line I could see
That said my “Complaint” was – “SOB.”

Now, I don't use words like that; I surely know
That that epithet means something quite low.
I knew my mom well, and it sure doesn't fit
Her sweet personality, spirit, and wit.

Yet it stared right up at me, I couldn't deny
What it said on that paper. But why, oh why
Would that nice doctor deign to call me
That nasty ol' term of an SOB?

Now when I can't do something I used to do,
Or when I'm breathless after tying a shoe,
Or when my oxygen tube hangs up on a chair,
Or when I look at my now-thinning hair,

Or when I am finding that I must ask
For someone's help for a simple li'l task
I think I can grasp why that doc might call me
That obnoxious phrase of SOB.

But all's well that ends well, for as we thought out 
What we saw that that paper was talking about.
It wasn't a cuss word but instead a contraction
of my lung's insufficient breathing reaction.

We laughed as we saw that the cause of complaint
Wasn't what we thought, for cussing it ain't.
As a symptom of lung disease we now clearly see--
“Shortness of Breath” truncates to “ S.O.B.”
~LaVerne Wilson

**Thank You, LaVerne, for allowing me to share this wonderful tongue and cheek poem.  I know when I first heard someone within the Pulmonary Fibrosis community refer to SOB, I thought they had a potty-mouth ;)  Now, I know better!  ~Breathing

Monday, November 25, 2013

Get Over "It"

Soon it will be coming up on the two-year anniversary that my husband passed away.  Recently, a person told me that I should 'Get Over It' and to move on with my life.  The person also indicated that, we all lose people and I should not allow memories to control my actions.  

As a widow, I have heard that this type of thing happens.  Friends or family indicating their opinions of how long grief should last.  It had not happened to me directly within the last two years and I considered myself lucky.  But now, there it was, somebody said it.  How did I respond to that person?  I didn't respond to them at all.  After all, when I look into the mirror, I see my own eyes everyday and I know myself better than anyone else could.  

How did I feel about what was said?  Well, that part was what surprised me.  I actually felt a twinge of anger throughout the day.  What should "moving on" look like?  Is there a standard of moving on that I am unaware of?  I thought of all the things that I did after my husband's funeral.  
I continued to work full time.  I made improvements to the much ignored house.  I made friends.  I gave my children things to smile about and to continue to work towards.  I strengthened my relationship with my children and let them know that everything will be okay, that I am still here for them.  We went on family trips, to the ocean, to the mountains.  I continued to be creative and did things with my hands that make me happy.  I write and maintain a blog to help raise awareness for Pulmonary Fibrosis.  I realized that I need to care for myself and started to exercise and eat a bit better.  I contemplate what direction my life will go and explore the things that interest me.  I planted a garden.  I read books.  I swam in the river.  I hugged, smiled, and laughed.  Yes, I still keep my loved one's memory alive.  Hmmmm.... not bad for less than two years of losing a spouse, in my opinion.  What was making me angry?  Perhaps the feeling that I needed to defend and itemize my accomplishments toward growth.  Sorry, if it seems like I am not advancing fast enough for you.

I am not one who enjoys feeling anger, I reached out to a friend to see what her standpoint was.  As a matter of fact, she is Annie, my co-host on Breathing's Face Book page.  She, too, lost a loved one to Pulmonary Fibrosis.  She also experienced similar input from a friend, to just Get Over 'It.'  Annie indicated that 'it' is her lovely mother.  'It' is my beloved husband.  'It' was a father, a brother, a son, a friend.  'It' is not an it, It is a person.  A person that we care for and love.  She is right.  

As for not allowing memories to control my actions, that is true if the actions are negative and destructive. What if the actions are of kindness or advocacy?  If we do not allow our memories to shape us or control our actions how is it that we ever learn and grow?  I am glad I am not the person I was at 14.  I am glad I am not the person I was at 24 or 34.  This is because I experienced things that allowed me to reflect, learn and grow.  It is my belief that certain things happen to all of us that cause a struggle or a look within.  This is what life is!  There is a beauty in life because of these experiences.  Love, grief, happiness, mistakes, and success do become part of our memories for a purpose.  So that we can evolve in our thinking.  These are our own personal life's experiences that began from the moment we were born and shape us into the unique beings that we are.  To turn my back on the life's events that shape me would be turning my back on myself.  


Thursday, November 14, 2013

We Should All Have This Discussion ~Malcolm Weallans

It seems that being semi-retired is a misnomer, or at least it is in my case. I seem to have less time now than I used to. Besides helping NICE to train other Guideline Development Group members I also seem to have got involved with the Patient Voices part of NHS England. I think it was because of this that I heard of a conference that I attended today. The subject of the conference "The Leadership Alliance for the Care of Dying People" engagement.

This conference was one of a series of 12 being run in 12 different locations in England. The basic concept is that they are looking at how to replace the Liverpool Care Pathway and are looking for the views of patients, care-givers, care workers, and professionals as to what next. The conferences are being facilitated by a number of organizations including MacMillan, Marie Curie, help the hospices, and most of the locations are hospices so obviously they weren't expecting a large turnout.

But the subject is of great importance to all patients with a terminal condition. They really want to know what patients feel about these plans but as yet they don't know how to get patients to attend. I was appalled by the document that I received telling me about the events and I couldn't forward that to this group as I felt it gave a wrong impression. The thing I found most difficult was the title which referred to "for people at the end of life" and accompanied this by pictures of geriatrics. As we know from this group end of life is not confined to geriatrics.

But I still decided that this was worth me spending a few hours at showing people that there are significant other groups of people who should be considered in this context. I know that many of the group members will need to think about these issues and would want to make sure that they and/or their loved ones would be getting the best possible care at end of life.

The afternoon centered on discussing a document that has been produced by the Leadership Alliance for the care of Dying People. This was in response to the report produced by Julia Neuberger into what was wrong with the Liverpool Care Pathway. Basically they have decided to throw away the Liverpool Care Pathway and replace it with something else and they want to know what else. They have produced a discussion document which can be downloaded from 
and you can also comment on this. The discussions from the 12 conferences will be discussed to make sure that whatever happens there will be no repeat of the Liverpool Care Pathway debacle.

What I found most surprising this afternoon was that there were only 3 or 4 patients and there were 30-40 others. These others were representatives from hospices and care organizations, many of whom have been trained as nurses but have chosen to give up their vocation in favor of an office job. How significant is that? The other thing that I found surprising was that they all talked about how many of the proposals in the document were covered by advance care directives and the fact that this plan does not really cover what as wrong with the LCP. As they all seemed to agree the Liverpool Care pathway was not a bad idea, it had just been misused by a number of medics who seemed to forget that there is a need for compassion towards the patient and the family and instead concentrated on making sure that they ticked all the boxes so that they would not be penalized financially.  But there was also a group who had read the document and felt that this was merely another way of explaining Advanced care Directives/Plans. I don't know about you but I have never been asked about my preferences for end of life care, and that is despite having a long term terminal condition, and having spent 5 days in a coronary care unit. And I don't recall many people mentioning such directives or plans. Surely we should all have this discussion. 

Please take some time to get involved in this process and make your views heard. It is very important that patients and carers should make their feelings known.
Written By:  Malcolm Weallans

**Thank You Malcolm for sharing this fantastic information! This particular link is for those in the United Kingdom, although the concept is sound, no matter where we live. ~Breathing

Monday, November 11, 2013

My Donor, My Hero ~Pamela De Loach

It was November 10th 2011: It was a normal day for the De Loach’s (expect for me who has IPF and has to wear oxygen 24/7, this is as normal as it get for us). Bob and Rob were off to New York and I’m off to work thinking about the day and the long weekend with my girlfriend who is staying with me while Bob is away. It was a normal day at work as I ate my lunch in my office because I do not have the energy to walk to the staff lunch room. Back in the classroom we start lunch breaks for everyone else, one of the students’ needs to go to the nurse for a procedure so the other aide leaves.

Whoever said your life can change in a second was right. The phone rings, it’s the office, Tampa General Hospital (TGH) is on the phone they want to speak to you. I politely ask if I can call them back; the voice on the other end says "No, I’m coming to stay with your kids and you have walk to the nearest phone with an outside line." It finally dawns on me what it was- “the call”.

I thought about “the family plan” developed for when the call came, but I was so excited and I couldn’t drive home. Some of the school folks offer to drive me to TGH. The new “family plan” is quickly developed: Rachel, Joshua, and Angela would meet me at TGH and my school buddies would stay with me until my family arrived. I arrived at TGH and the testing began to see if the donor and I were "the perfect match".
As we waited for the test results to come in, the doctors and I spoke to Bob and the rest of the family in upstate New York via Skype. Everyone was in a good mood and when my coordinator announces “IT’S A GO” the room breaks out in cheers and tears as our prayers have been answered.

The next hour is a blur, the family walks with me to the OR and we say goodbye. I really got scared in that second. The surgery started shortly after that and my new lungs are in on November 11th 2011.

My donor and their family are my heroes. In their grief they honor the request of their loved one and gave me a chance to continue on with my life. As we celebrate this second year, we have to remember my donor’s family. Please remember to check off that donor box on your driver’s license and tell your family your wishes.

**Thank You, Pamela for sharing your story with us!  What a beautiful gift that has been given. ~Breathing 

Monday, October 21, 2013

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.

Sunday, October 13, 2013

Tid-Bits About Pulmonary Fibrosis (Part 1)

~For all the other Supermen and Wonder Women that fight for life every day~

●  Approximately 48,000 people are diagnosed each year with Pulmonary Fibrosis

 Pulmonary Fibrosis is 100% fatal (without a lung transplant)

  Every 13 minutes someone dies of PF.  That's roughly 111 people each day
  3,323 will die of PF by the end of this September

  Approximately 40,000 people die each year of PF
  Pulmonary Fibrosis means literally "of the lung Scarring"

  It is impossible for lungs to function when they are full of scars.

Written By: ~Anonymous

**  Thank You, Anonymous, for allowing me to publish the information you have compiled regarding Pulmonary Fibrosis.  Some of the information is heart-breaking to read, although for those of us who have experienced a loved one with the disease, or have it first hand, sharing information is our most powerful tool.  ~Breathing

Monday, October 7, 2013

Twisted Knots

Hi Babe, It is me.  In December it will be nearing the 2 year anniversary when you departed my arms.  Only a few months away.  I have been working along my little path and even when I can't see where it is leading, I have been sure to stop and soak in the beauty around me.  For that alone, I know you are proud of me.  Fall is now here and the leaves on the trees are changing color.  The coolness in the air surrounds.  

I have been maintaining and managing to the best of my abilities.  The house is buttoned up with the exception of one repair that I would like to make before Winter sets in.  If I can get that completed then all my homestead goals will have been fulfilled for this year.  The garden has been the best it has ever been.  It was a record year.  I think it was because I laid straw down to keep the weeds out and it worked very well to hold the moisture in for the plants.  

The river bank?  It is still the same river bank, growing as wild as ever.  Although two trees, the same ones you kept cutting down so it would not obstruct our view, came back. They were growing big!  So big, in fact, I knew it was something that I had ignored and once they began to take over, I contemplated just letting them grow.  I wondered if I should just let them grow and tried to imagine not seeing the water from the house anymore.  I thought it might be a blessing as a windbreak.  But, deep down I knew I was just justifying keeping those big weeds around because I didn't know how to remove them.  So, I made a phone call and had someone cut them and immediately was glad I did.  I vow to catch them early next Spring so that they will not grow out of control anymore.

You have really changed my life.  Given me the opportunity to see what my own capabilities are.  I am even thinking about my future.  Trying to imagine in a very real way what I would want the second half of my life to look like.  I can only see a foggy outline.  Snippets of things like me still living and taking care of our home, River-Rose.  Each year living more simply and naturally.  I realized that I only envision myself doing tasks that make me extremely happy- only have to do with the family we once had.  Now, our immediate family has dwindled as my oldest has left the nest and our youngest has just become a legitimate teen at 13 years old.  I try to imagine what the house will sound like when there is no one to call out to.  What type of thoughts will roam through my brain as I live my existence alone?  Will I be comfortable with the stillness?

I realize that you and I had an age difference and that is why we joked you were the geezer.  Still, your life ended too short from Pulmonary Fibrosis at age 50.  Which is an age that I think is still very young.  When I transfer that to being a widow at my age, it seems I have a long road to walk down in solitary.  This is not how I pictured things would be for me when you and I were healthy, before this disease came into our lives. At the same time, the idea of being alone does not cause me enough discomfort to want to be with anyone else.  To the contrary, it actually prompts me to discover how I can be more at peace with myself.  To perhaps imagine finding a different kind of joy in my journey.  And that is why I contemplate.  I realize that I must imagine what things I want to bring into my life that will fill my future days.  I cannot be complacent in a comfortable area.  If I would like my life to be a journey of joy, I cannot wait for joy to knock at my door, I have to reach out and work for it.  

Money, travel, clothing, things, may bring a little better sense of security to ones mind, but it doesn't change what lives in our mind and soul.  I have picked up and left and driven for days.  I have found the most beautiful, exciting, and serine places.  In the wrong frame of mind, none of it filled me.  I could have the ocean outside my window, sitting in a beautiful room, and still be filled with twisted knots.  

Just a thought, My Love.  Thank You for bringing me to a moment in time that I have been forced to be truly honest with myself.  Even though I have not discovered the answers, the period of discovering purpose is a gift in itself.

With All My Love....

Friday, September 6, 2013

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! 

Sunday, September 1, 2013

Doodles From Grief Counseling

 I look at my spirit like a garden.  There have many days I have been cultivating my garden, and there have been times that the wind and storms have ripped it to shreds.  There have been times that I have ignored the weeds and there have been times I have been on my knees, picking each one out.  I have introduced new plants to my garden and I have learned which plants are not suited to grow there.  Loving and kind friends have suggested that I may be spending too much time on my garden alone.  I should enjoy sharing my garden with others.  

Just over a year and a half after my husband's passing from Pulmonary Fibrosis, I decided to go to a grief counseling group.  Although, I feel that my understanding of my husband's death has been fairly healthy and I can look back over the year and see the ways that I have grown as a person, I also know that it is good to push myself out of my comfort zone.  Often it is under these circumstances that I have grown the most.  

It was a very small group and ice-breakers were in order to get us acquainted.  A small envelope was handed to us and inside the envelope were many words cut into small squares.  We were told to pick one word that best described our last week.  I poured the words on the table before me and sifted through each one.  Words were spread out before me such as Anger, Isolation, Bitter, and Sad.  I searched, but could not find one nice word.  I did want to say something, maybe all my nice words fell out or was given to someone else in the group.  But, I do not like confrontation and I didn't feel like defending my standpoint, that while, Yes, I did feel some of those negative words last week, I also felt Love, Laughter, and moments of Joy. Perhaps in haste, I decided this was not where I needed to be.  It's one of those things when you just need to listen to your inner-voice. 

 I did stay the rest of the meeting and most of my time was spent with ears open, and hands on paper, doodling.  I still wanted the discussion to flow through me and to absorb what I could, when another exercise seemed quite fitting.  It was explained that grief is not just one big thing but a series of small things over a period of time.  For instance, yes, I miss my husband and learn to deal with that everyday- although why is it that when I have a problem with the plumbing, I unexpectedly break into tears and sadness for a whole day? It is because our loved ones are made up of many components and our love has many facets.  We not only miss that person, but a million tiny things that remind us of them and grief is mourning each and every one of those things individually.  

So, as I listened to this, I began to add to my doodle some of the ways I missed my husband and acknowledge that I will need to mourn these things as well....

Your Eyes
Holding Hands
Your Smell
Our Music
Making Love
Our Travels
Your Hair
Annoying You
Making Up
Your Eyes
Your Coffee
Our Plans
*What I miss most of all and really can't be replaced is 
Our Chemistry



Sunday, August 25, 2013

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

Sunday, August 11, 2013

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.  

Wednesday, August 7, 2013

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

Monday, July 29, 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.

Sunday, July 7, 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.

Sunday, June 30, 2013

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. 

Friday, June 28, 2013

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. 

Sunday, June 23, 2013

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.