Friday, November 10, 2017

My Heart to You

It has been so long that I have truly written here, that I barely knew my sign-in name. 2011 held my most profound moments and emotions.  I do come here, to look at how many people have visited and from where in the world they came.  This was an amateur blog, written from the heart.  I also come here to read.  Sometimes, I can read only little bits at a time; other times, I read through everything like a novel.  First, I remember every feeling and moment.  Second, I see others that I approached to contribute their writing's and also know many have passed away.  Third, I notice my lack of editing and grammatical errors.  

Still, I notice that over 15,000 people have come here.  Some, just due to a google question that went wrong.  Even if that were half of the people who came, both halves matter.  

I have barely started writing again.  This place, I was so honest and raw, that it has been hard to write again.  I have been busy, trying to find my own spirit and supporting my children.  But, when I come here to read, I know that I was honest.  This disease.  Not everyone who has Pulmonary Fibrosis has the same experience and some make different choices, plus, it is a different time.  

For my husband, this has been the most truthful account from someone who loved him.  I still do.  Love him.  The words I write are not just for the sake of raising awareness, but instead; I am a writer, that writes about difficult experiences that have come to me personally.

Thank You for coming here.  Don't be discouraged.  No matter what, reflect outward in the way that is most creative and beautiful to you.

The things I tend to read on my blog are from this period of time.  If you want to go further back, hit- Older Posts, at the bottom of the page. This represents my heart the most and is what I have the hardest time reading, but am still thankful to have every experience associated with my husband and family. 

It is a love story that I hope you read...


Monday, January 2, 2017

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,

Thursday, September 1, 2016


My personal thoughts and emotions as a caregiver, wife, woman, mother, widow and advocate of Pulmonary Fibrosis ...

Tuesday, December 15, 2015

Since You've Been Gone~ 4 Years

Hey Babe,

It is hard to believe that 4 years have passed since you left us.  In a way, I know your not very far away and I can feel your gentle support as I make my way through life.  

When you first left, I remember sleeping.  I slept as I never had and someways, now that I think about it, I probably sleep-walked through the entire first year.  It was probably my body's way of recovering.  As time passed, I, then had trouble sleeping without you.  Staying up to the wee hours of the night and awakening before dawn.  Each day was always a reminder that you were not there.  

I made it a point to take road trips.  Less about the destination and more about the desire to prove to myself that I was a capable woman.  During the second year, I got myself a camera.  Nothing too expensive, but it suits me fine.  Since then, my camera has been my little companion.  I have always been creative, but when we went through your illness, I wondered if that part of myself had been lost.  It might sound strange but the camera saved my life.  I enjoy the beauty that unfolds each day and I enjoy the patience of photography. Being still.  

I still have a hard time with what seems like our shrinking family.  My oldest is now out on his own, following his dreams and working hard at it.  The youngest, is a teenager now.  Very thoughtful and attentive, although, as you know with teenagers, that only can go so far as they really need their space.  I try to remind myself not to rely too much on him and to learn to find contentment in my own space.  It is something I work on daily.  It is scary to think that I am completely on my own.  I think the hardest part about it is not being able to share things with another who understands me.  Certain thoughts and experiences to only be kept to myself.  I have found though, there is a beauty in learning to thrive within the serenity of my own soul.  

I have taken a few chances.  Recently, I bought a very old cottage to renovate.  One day, it might be my downsized home.  When I am there, I feel happy.  There is something about having a home that is just mine.  It is the first place that I have owned that I have not shared in raising a family, or as a married person. Lately, I go there and paint on a canvas.  Just simple abstract stuff.  But, again, that is another thing that I stopped doing when we went through your illness. It feels really good to blast music and just mindlessly paint.  It seems cleansing and healthy to me.  

I am trying to make the conscious effort to be a healthy person.  Not necessarily physically, although that is also coming along.  But more about, up here, in my head.  One of the best things I did recently is decide, that I do not want to be a martyr.  Yes, I am a widow, and yes, only you and I know the ways in which I still grieve.  At the same time, I have chosen not to be "In Mourning" my entire life.  It was a personal choice that needed to be made.  Since for whatever reason, I happen to still be walking on this Earth, should I allow my entire existence to be determined by your death?  I want to celebrate in my existence.  For instance, everyday, I have been playing music.  Recently, I started to dance to the music.  Really dance.  To feel my body come alive, to feel sexy, female again, elevated my heart.  I did this without guilt.  I found myself happy for a moment and I have decided that is okay.  I am still here, still ~Breathing.

I love you, Baby.     

Sunday, November 22, 2015

Amazing Gift ~Written By Pamela De Loach

You know that moment in the morning before you are fully awake; I listen to my lungs - what a miracle! I can take a deep breath in and realize I can feel the air going in and filling up my lungs and then I can blow out my breath slowly. What an amazing gift!!!!!! Little over four years ago, I was fighting for every breath due to idiopathic pulmonary fibrosis (IPF). Today is my fourth lung anniversary and, as always, my donor is my hero. Today I think of their family and I hope they realize what an amazing person their loved one was and the fact they saved my life and perhaps the lives of others. What a gift they gave my family!! It’s still sad to think they left our world but left behind amazing gifts and allow others to live on. The best way you could help me celebrate this anniversary is make sure you are a donor. My family, doctors and friends are my greatest support system. Thank you all.
 ~Pamela De Loach

Sunday, October 18, 2015

Pulmonary Fibrosis Patient and Caregiver Map

If you or someone you love has Pulmonary Fibrosis, you may have felt somewhat isolated as this is considered a rare-disease. A map has been formed to help assist in connecting both patients and caregivers, alike. Please check out this valuable tool.  ~Breathing  

Thursday, September 24, 2015

Keep On Keeping On! ~Written By: Denise Queen-Sackinger

On this day, 7 years ago I underwent an open lung biopsy because a pulmonologist assigned to me a month earlier while I was in the hospital with double pneumonia didn't like what he saw on my x-rays. And the rest, as they say, is history!
Like most diagnosed with this mess, I had been seeing my PC doc for over 2 years about a chronic cough. Like most, I had never heard of IPF. Like most, I was scared out of my mind when I got the results of the biopsy. But here I am, 7 years and still stable. I sleep with O2 and use it with exertion. I had to quit working 2-1/2 years ago due to the high stress job and the bone degeneration caused by Prednisone. But, I've beat the statistical odds and for that, I am grateful. My 1st grand daughter was 3 days old on this day 7 years ago. I was sure I would not see her walk, much less be the young gymnast she is. I went to her 7th birthday party this past Saturday and best of all, I have 3 more grand daughters; her baby sister and her 2 cousins. I am blessed.

It's not lost on me that September is the month I was diagnosed and it is PF Awareness month. The year after I found out about this disease there was a PF Awareness WEEK. We are making progress! I've met some great people on FB the past 7 years. I've made life-long friends; most I'll never meet. I've lost far too many. If you have the energy to be an active advocate for PF, I applaud you. If you are at a point where you can only tell one person, one PF fact, I applaud you. Love, peace and happiness.  
“Keep on Keeping On!"  Written By:  Denise Queen-Sackinger

**Thank You Denise, for allowing me to share your experience.  You're spirit is amazing and may you have many more blessings to come!  ~Breathing