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

5 Things Every Person Living with a rare disease understands ~Written By: Rachel Wilson

5 Things Every Person Living with a Rare Disease Understands

Most people have heard the term “rare disease” but far fewer can name a rare disease let alone imagine what life might be like for those who have one. When it comes to rare diseases, including rare pituitary diseases like Cushing’s disease and acromegaly, what’s truly rare is the kind of public awareness and understanding that people with a rare disease truly deserve.

Rare Disease Day, which falls on February 28, aims to spread awareness about these conditions and the impact they have on patients’ lives.

How rare is “rare?” On one hand, people with a specific rare disease are statistically few and far between – in the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. In the UK, a disease is considered rare if it affects fewer than 50,000. On the other hand, there are over 6,800 such diseases, according to the U.S. National Institutes of Health (NIH), so for something considered “rare” there sure are a lot of them.

In support of the rare disease community, Novartis will be launching an educational initiative called “A Day in My Shoes” which aims to tell the stories of people living with acromegaly. We spoke to several individuals for this post, and, as part of this effort to educate, they shared five things almost every person living with a rare diseases knows:

1. Getting properly diagnosed is one of the biggest challenges. Rare diseases are so rare that the symptoms are often misunderstood and as a result, people with rare diseases often spend years trying to get properly diagnosed. In the case of acromegaly, getting a correct diagnosis can take anywhere from six to 10 years and for Cushing’s disease, it can take about six years on average. By the time they’re diagnosed, many patients are just relieved just to put a name to their symptoms.
2. Your friends may know about your diagnosis, but only a few gems will really get what a chronic illness is or what it means. Many people are so uninformed about rare diseases that they expect your rare disease to clear up like a lingering flu. Blogger Rachel Wilson has Cushing’s disease, an endocrine disorder caused by a noncancerous pituitary tumor which ultimately leads to excess cortisol in the body. “There’s not a lot of empathy,” she notes. “Even some people that know me kind of get annoyed. ‘You’re sick again?’ or ‘What do you mean you can’t walk with us? But you walked last week!’”
3. You choose whom to tell very, very carefully. Most people living with rare diseases agree that once a diagnosis is public knowledge, people treat you differently. “I want them to know I have serious health issues but… I don’t want people to look at me like I’m disabled,” Rachel explains. There’s a paradox that patients face – wanting to tell but knowing that the people they tell are likely not to truly understand without a lot of effort on their part to explain…and then still, they probably won’t get it like they do with more widely known diseases such as cancer or multiple sclerosis.
4. Rare disease patients often play a large role in educating their doctors. Rare diseases aren’t just rare to the general public, they’re often rare to the physicians who treat them, even specialists. You’ve tried what seems like every available treatment, read medical journals, and done your own research. With all this, plus just living with the condition, you are the world’s foremost expert on how your rare disease affects you.
5. People will try to cure you. Not just your doctors. Everyone. Your Aunt Sally swears by a green smoothie and its healing properties. Your son’s third grade teacher has these supplements you simply have to try. “Everyone knows everything about anything,” is how Rachel puts it. “People like to diagnose you, or treat you, or, since they heard about this on a TV show, they know it’s not as bad as you make it out to be.” Many rare disease patients feel that people equate “rare” to “not really understood by the medical community.”

And while some of these realities for people living with a rare disease may indicate that they want both privacy and just to be treated like everyone else, most are strong advocates for public education efforts. Cushingstories.com co-founder Rae Collins notes, “Educating was key. To help others understand the disease, for me to understand it more, to help doctors even understand what I was going through. The more people who understood in my life, the better it became to me.”

Check out Novartis’ The Voices of Acromegaly and Voices of Cushing’s disease, a three-part video series that feature advocates, caregivers and people living with rare diseases on the Novartis Rare Disease YouTube Playlist.

For additional information on rare diseases and Rare Disease Day, visit Rare Diseases: More Common Than You Think? or the Rare Disease Day 2015 website.

via;  http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands

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

It's The Simple Things That Are Important~ Written By: Christy Mccullough

Five years....five years that my life was changed forever. The day I was told and crying coming out of that office and not even knowing what exactly it was I had but knew I would have to have a lung biopsy. How could this be happening to me? What would my life be like? So many things running through my head and not knowing where to turn. I didn't even know what Interstitial Lung Disease was and what life was going to become. It took me until after the New Year to even realize what was happening and longer to tell family how bad it was. 

I went through stages of denial, grief, anger. The thought of never seeing my children graduate, not being there to help my daughter pick a wedding gown, never seeing my grandchildren. Why was this happening to me? I thought my life was over. My children, family, and friends would watch me die slowly and there was nothing I could do. But I was wrong. I was not raised to give up and I have been through many things that I came out of and I would keep fighting not for me, but for my kids. To know that mama doesn't give up and show them you keep fighting no matter what. 

Days are not always easy. I gained weight from meds and lost my self confidence of not just as a person but as also being a woman. I can no longer breathe as easy and do things like I could. I don't like asking for help, never have. And hate when I can no longer do things as I could before without having to stop cause I can't breathe. I would never be the same person as I once was. 

I found support though with family and friends and also support groups in which those people have now become like family.  I can't say that it's not hard as it was but I have come to terms that one day my time will come. We all leave this world one day but somehow it's different when you know that you only have so long and there's nothing you can do about it. The one thing you do know is that you live. Live everyday. It's funny that at times I forget that I'm sick and have a moment like why am I coughing so much and remember~ oh yeah "lol"! Five years of coughing so hard you break your ribs, Five years of changing how you do things, five years to learn that it's the simple things that are important. 

So many people take for granted the little things, little things as just being able to breathe. Be grateful for the little things and never take life for granted. I have made the five year mark and plan on fighting till the end. I thank God for giving me the chance to wake up and try again everyday. I thank God for the family and friends who love me and give me the strength I need at times and a husband who has done more than support me in every way everyday.

**Thank You, Christy for allowing me to share your thoughts and to help lend hope for those diagnosed with Pulmonary Fibrosis to know that it is a learning process and perhaps, somewhere within that process is a deeper understanding of the things that are truly valuable in our lives.**  

~~~Breathing~~~

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

I'm not here to answer your call right now~

After my husband passed away from Pulmonary Fibrosis, I could not bear to cancel his cell phone line.  Talking on the phone was so much of our relationship, kind of like our life-line.  He worked out on the road and while he was away, we called each other with every new day to wish each other a good morning.  We called one another every night to bid a good night.  We called each other in the middle of the day to talk about whatever we were dealing with at the time.  It was a way to find out if we were safe and not a day went by that we did not speak.  

So, when he passed away, my youngest child and I decided to leave his phone line alive.  It helped us both a great deal.  My son would often call his phone while having a hard day at school.  Meanwhile, I would call my husband's line to wish him a good night or to tell him my car had broken down and I just needed to talk. We called his line every birthday, wedding anniversary and Christmas.  On New Year's Eve, my son and I would dial into my husband's voice mail and put the phone on speaker and listen all the messages we had left.  They were mostly tearful whispers and inaudible crying, but we could still make out the words we were trying to say.  

I finally discussed with my son that we should think about cancelling his line.  My son agreed.  After all, deep down we knew that most of the time we talked to my hubby, it is through our hearts and not on a ten dollar a month phone line.  We recorded my husbands voice mail message on another device and then I took the big step to call my phone provider and let them know.  

The customer service provider apologized for our loss and  indicated that we would not have to pay a cancellation fee for that line if the person was deceased and asked the date of my husband's death.  
"December 15th", I responded.
"Okay"  she said, "December 15th of 2013."  
"No, it was actually December 15th, 2011."   Realizing that two full years had gone by.  

I began to explain why we kept the phone line alive and that I had not been ready to cancel it until now.  She said that it was perfectly understandable and that she too, had dealt with the loss of her father and still wishes she could hear his voice.  She cancelled the phone line with no issue and we ended up sending tearful wishes and blessings to each other.  She was very kind.

I still have my husband listed on my speed dial.  I can't imagine anyone else's name listed there.  

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

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

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.  

   

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.

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. 

The Power of Perseverance ~Frank shares his story of a double lung transplant~

 

Hello, My name is Frank and I was diagnosed with Pulmonary Fibrosis (IPF) in the early part of 2007. I became symptomatic in the fall of 2006 with a cough and shortness of breath. I didn’t think much of it because I was overweight and out of shape. Not to mention I had just quit smoking after 25 years. I had my first heart attack at age 39 and that was the warning sign that everyone including me missed. In the beginning I was in denial. I still rode my motorcycle how could I be sick? As time progressed so did my disease. As things progressed the reality became more prevalent. As I got sicker it was a different type reality. I am going to tell you a brief summary of my journey down the road less traveled and how determination and perseverance are why I am here today.

 

For several years my Pulmonologist treated and stabilized the progression of my fibrosis. I lived a fairly normal life. I worked and traveled and enjoyed being with my family. Eventually I started using supplemental oxygen to breathe easier. The cough got worse and the oxygen increased. Then one day on my way home from work my oxygen tank emptied and it affected my ability to judge the traffic. I was on my motorcycle and tried to stop hard. I lost control of the bike and laid it down. I landed on my chest and slid 40 feet down the street before stopping. The trauma set my progression in motion and this time there was no stopping it.

 

You will often hear transplant patients and medical staff talk about “bumps in the road”. These are the little things that cause some difficulty in life as a result of the illness or the surgery. Most of the time they occur after transplant and can be fixed with some treatment or adjustment in medications. I was the lucky one. I had my bumps in the road before my surgery.

 

For my first bump I was at my cardiologist and explained to him that I had a really bad cough and I was concerned about the stress on my heart. So he put a monitor on me for 24 hours and that’s when we found out my heart rate drops below 40 when I sleep. For those that don’t understand what that number means a good athlete will slow down to around 40 beats and I was no athlete. When the doctor said we need to put in a pacemaker I became emotionally unraveled. “I need to check with the transplant team first. I don’t want to be disqualified for a transplant because of this” All sorts of emotions were running through my head. I can die from having my heart stop or I can suffocate from my lungs not working. Some tough choices needed to be made. The next week I was having the pacer put in.

 

My next bump was really scary. I had been complaining to my doctor that it felt like there was something in the back of my throat like my sinuses were bothering me. I told him I could not blow it out my nose nor clear it.  He attributed it to inflammation. Finally when I when I started choking on my food he had me see an ENT doctor. Well when he found the golf ball size tumor in my throat I figured we were done, my life was over. The biopsy was inconclusive so they referred me to the Mayo Clinic where they did a different type of biopsy to find it was not cancerous. But I still would not be able to get listed for transplant with the tumor there. The transplant team was concerned it would obstruct my airway. The ENT surgeon felt my lungs would not survive the surgery to remove it. So once again I faced off with the grim reaper and this time I was going to kiss his butt.  Perseverance will prevail.

 

By this time I am on high levels of oxygen and I get around on a scooter because I can’t walk without my oxygen levels de-saturating to a dangerously low level.  I was tired and running out of fight. I knew I needed to do something fast. I set up an appointment with the social worker from the transplant team. I told her I was going to die and I was done fighting. The ENT and the Transplant surgeon could not agree on what to do so I told her that I wanted a meeting with all my doctors the Primary Care, Pulmonologist, Cardiologist, Transplant team, the Surgeon and even the doctor from Mayo Clinic. I told her we will all meet here at the hospital on a Saturday morning and we are going to discuss my case and get this resolved. Then we will see who wants to sign my death certificate in the presence of the other doctors. She advised me that it would be difficult to get everyone together at the same time and I reminded her that a subpoena would take care of that problem. Ironically I received a call that week to go in and test to see where my numbers were at. I was listed a few days later and I got my call in two weeks from the time I was list.

 

I am now 18 months out from a double lung transplant and I live a fairly normal life. When you have Pulmonary Fibrosis and you receive a lung transplant you exchange a terminal disease for a chronic one, but the benefits far out weigh the risk. I will take anti rejection meds for the rest of my life and I will need to be conscience about my exposure to germs and bacteria but a small price to pay for the gift of life. I have said this ever since I was diagnose and I will forever preach this “YOU ARE YOUR BEST ADVOCATE” so don’t ever give up and fight till you get what you need.

 

God bless. . ~Frank J. Giunta~

Rain Song

There is a song that I love and in it the lyrics say, "I've felt the coldness of my Winter".  I have sang that many times and thought I knew what the words meant.  At this moment, in my part of the world it is Springtime.  Many areas are still dealing with a late Winter, causing people to wonder when the beauty of Spring will come and the Sun will shine upon their faces and bodies.

I want to share something with you. For the last while, I have been secretly wishing Spring away.  I have been content in my Winter.  With the dark hours and safety of my dwelling, I am in my little cocoon.  Safe.  When the rays of sunshine began to peak out and the days grew longer, my heart was filled with anxiety.  I looked outside my window...

I thought about how my husband was a 'Boy of Summer'.  His tan skin and sparkling eyes, like water.  He enjoyed every moment in the sunshine.  I used to be the same as he.  We both would awake in the early morning hours and work in our yard.  Silent, yet somehow dancing to our own music.  We, together, were ambitious in seizing the day.  Working hard to preserve our simple home and encouraging the flowers to bloom.  As the days grew warmer, we ended our daily dance by jumping in the river.  Soothing and sweet the water rushing through us.  Then, we lazily ended our day blissfully lying around, looking at the birds and the sky.  Talking about this and that.

As I looked outside my window, maybe I saw him in everything Spring.  Maybe I was scared that somehow, I must step outside and find the gumption to work on all the unfinished projects that were left behind.  Maybe, I was scared of what others would see of me.  Could they see how alone and afraid I felt?  I couldn't have that.  It overwhelmed me.  I walked away from the window and wished Spring away.  I want to snuggle back into my quilt and stay there. 

Days grew warmer and I stayed in my quilt.  It is a conscious decision.  I know, because I contemplated the repercussions of withdrawing from the world.  It would surely take it's toll on my body and health.  My spirit and creativity.  But, I didn't know how to start. 

In a moment of giving up or maybe it was reaching out, I grabbed the phone book and called a landscaper.  I know it doesn't sound very profound.  But, it took a lot to just do that.  In some ways, I had to admit to myself that I could not do it all.  The gentleman came out and I showed him all of the unfinished projects around the house.  He wrote me a bid.  "Excuse Me?"  I thought when I saw the price.  I let him know I would sleep on it.  That night, I held the bid in my hands and mentally asked for guidance from my husband.  I didn't receive an answer, but knew if he had been here, he would say, "What are you doing?  You know I can do all that!"  ~But You are not here.  As I looked at everything listed, I chose the top two priorities and the next day, called the landscaper back to schedule the work. 

In the meantime, I put on my gardening shoes.  Found my old gloves and stepped outside to work on the other items that I could not afford.  I felt the Sun on my face and my hands in the dirt.  I worked and worked and the kids joined me.  I worked until my bones ached.  But, it felt good.  I continued to add to my list and today I feel the glory of the day.  I see the birds flying and beautiful sky.  I feel closer to my husband.  Each day, I wake up and can't wait to meander around the yard.  I feel a lightness in my heart.  It feels like living. 

Sometimes, it is true that it takes just one, little, tiny action to get the ball rolling.  It gains momentum and the 'Coldness of my Winter' has passed ~At least for this day, and today is all that matters.

Excursions

This weekend my youngest son and I took an excursion into the city.  It was for his annual cardiology appointment.  He was born with a congenitial heart defect called Tricuspid Atresia.  He is now 13 and has had three open heart surgeries.  We monitor it every year.  One day, he may need a heart transplant, although his doctor indicated he is doing very well at this time :)  This made us very happy!  We brought the old camera that I found in the drawer and took a few pictures.  xoxo

The Supra-Eruption of Tooth 15 (A Love Story of Sorts)

Warning, This true story depicts the life, care, and loss of a tooth; with intentional correlations to a deeply rooted love affair.  Sense of humor is advised....

It was 18 years ago and I was the young mother of a sweet 3 month old baby, living in a frigid basement apartment right next to Utah Lake.  My first husband and I moved to this area, just starting out in life and money was sparse.  I contemplated this as I sat eating a pork rind when I felt the crunch of a back tooth. 

Upon a visit to the dentist it turns out I had fractured a molar and at the time we could not afford the dental work to repair it.  Taking the tooth out was only $50.  I asked the dentist what the repercussions of this would be and he did advise, that perhaps, 20 years from now -the tooth above it may miss it and wander downward to find it.  At the time, I was so young and 20 years sounded like a world away.  This was a no-brainer, lets take it out!  So we removed the tooth.

Fast forward to now.  The upper molar is now seeking its long lost mate.  Sure enough, on an 18 year odyssey, tooth number 15 is desperately seeking to be reunited with the lower tooth that is no longer there.  Slowly, it has dropped down, filling in the space of the missing tooth.  My current dentist indicated that it would probably be best if it was removed.  He saw the disappointed look on my face and questioned me about it.  "Well" I told him, "It's just that I have had that tooth for a really long time." 

I mentioned this to my mother and she found it quite odd that even a tooth would miss it's mate and would actually go looking for it.  I mentioned this to my Aunt, and she wondered what would happen if instead, the tooth was cavalier and had more of the attitude that it would be better off on its own. 

But of course, I would find myself with "sensitive" teeth.  Teeth with feelings, or "fillings".  Teeth that go searching for each other...  just my luck. 

Tomorrow, I will go in for the extraction and in a note of seriousness and honesty-

There is a part of me that is proud of myself that I took the initiative to encourage good health in my body.  After losing a spouse or loved one, it is easy to ignore personal issues that go on, or to put off appointments.  It is much harder to make decisions, too.  Especially when the person you would discuss this with is gone.  These differences show in other family members as well.  After caring for a terminally ill person, it becomes easier to see how fragile life can be.  I can see this in my youngest child too.  "Are you sure it's a simple procedure Mommy?"  He asks with worry in his voice. 

"Yes, baby it is."  I say, "And you know what?  Now both teeth will finally be reunited in tooth Heaven."  

Which makes him smile.  I am getting a bit long in the tooth now.  Thanks for listening and wish me luck!

xoxo

  

The Grief Channel

A year went by.  I wonder, where did it go?  Yes, I survived, but what did I learn and was I truly present in the moments that have passed?  I try to remember exactly how I felt or what I was doing at this time last year.  I can't.  Only snippets come back to me.  I remember last year, on New Year's Eve going to bed early.  I remember the relief of sliding into bed and pulling the soft blankets around me, laying my head on the pillow.  I remember sleep was my only haven -and even then, it was a minimalist haven, at best.

My husband passed away on December 15th, 2011, from Pulmonary Fibrosis.  He was the love of my life.  The only person that knew all of the real me.  When he was alive, I had somehow elevated him to hero status.  In my eyes, he was the only one who defined intimacy.  My partner, my mate. 

I was in denial, looking for him around the house.  Still, opening my bedroom door and seeing a faded image of him in blue-jeans and glasses, smiling, as I came through the door.  Then, poof!  The image is gone, he is no longer there, and the impact of that would immediately bring me to my knees.  No!  Where did you go?

I was in auto-pilot mode.  Like a zombie, moving slowly in my mind. Coiling up his oxygen tubing.  His glass of water on the nightstand.  Folding his glasses.  Fluffing his pillow.  Looking at those stupid meds on the table.  Those were the first to go and I bagged them up with disgust and anger. 

Then I would look for him again.  It was as though I had misplaced him.  I can't find him anywhere.  I still feel that way.

Then, the crying.  Constant crying.  Not the kind your mind thinks about before hand and then the tears come.  No, it was just the immediate tears before the brain has a chance to catch up.  The grief, palpable.  It was physical.  The tears during the day, then at night.  At bed, my mind ripping through the tangible love and experiences we shared was like torture.  Then the sleep comes and I see him, he comes to me.  Upon the first collective consciousness of morning, a thud in my chest and the tears come again.  It goes like this, on and on. 

Despite the physical ache and heart wrenching longing for my husband, there was also a parallel feeling that somehow he was watching me.  I could just feel it.  Even from the very moment that his eyes lost their sparkle and I knew he was gone.  I felt him watching me. 

Everything I did from that moment on, there was a deep feeling that he was seeing it all.  There were even moments within me that I felt shy about this.  In our marriage, although we shared the most intimacy I had ever experienced, we also had established a certain level of manners and respect for each other.  There were just things we did not do in front of each other.  Great.  Now he has the advantage of seeing all of those things about me.  But, what could I do besides just being me?  I hoped that wherever he was, he had a deeper understanding of human-nature.

Somehow months passed, although, my emotional disposition had not.  I stayed in a foggy, grey area within the recesses of my mind and heart.  Stuck repeating the same day, every day.  I told myself that grief has no time limit.  I knew in my heart what I was doing is what I needed to do.  All the while, I still felt our connection, I still felt he was watching me.  I began to consider what things where like from his point of view, wherever he was...

Just for one second, I contemplated the idea that he was truly watching me and it wasn't some sort of trick my mind was playing on me.  What if he was somehow still connected to me?  What if he died, but still had his own thoughts and feelings?  What if he was checking in on me and maybe flipping through others he cared about, too?  My mind imagined him flipping through TV stations of all the people that he loved.  His children and mine, his mother, ex-wife, siblings, best friend.  I could see him doing that.   Just checking in to see what's going on and seeing our daily struggles in a place he no longer dwells.  Then he gets to my channel.  There she is crying.  There she is grinding her teeth at night.  There she is crying again. Over and over. The Grief Channel plays the same thing all the time.

One day, I was blogging on the computer and the feeling came to me that he was watching me again.  A feeling of approval came over me, as though this made him happy.  I realized that I want to make him proud.  We are still in a relationship.  When he looks at my channel, I want him to beam with my progress.  It was a turning point for me.  It was the moment that I realized I had to fight to add more texture and experiences back into my life, so that I could share it with him.  To be honest, I haven't stopped crying, he knows that.  But, I have added other things into my life in addition to the crying.  Such as laughter, silliness, and love.  I have changed the channel.  The more I do this, the more proud I feel he is.

Somehow, I am here.  A year later.  I survived.