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
Showing posts with label love. Show all posts
Showing posts with label love. Show all posts
Tuesday, January 8, 2019
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...http://breathingair1.blogspot.com/2011
~~Breathing
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,
~Breathing
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.
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.
Labels:
acceptance,
caregiver,
diary entries,
emotions,
family,
grief,
growth,
health,
independence,
life,
loss,
love,
our story,
sharing
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
Labels:
advocacy,
awareness,
emotions,
growth,
independence,
life,
living with,
love,
sharing,
support,
surviving
Monday, September 14, 2015
5 Ways to Help the Caregiver In Your Life Written By: Ann Napoletan
Article Via; Caregiver's Blog
Written By: Ann Napoletan
If you think you are too small to make a difference, try sleeping with a mosquito. ~His Holiness, the 14th Dalai Lama
It’s true – there are those who insist one person can’t make a difference in this world. However, having recently been through an extremely difficult time, I have to respectfully disagree. In fact, I can say with complete confidence that each one of us holds the power to do wonderful, often simple things that can categorically change the course of another human being’s day.
If you have ever tried to extend a helping hand to a caregiver, you’ve likely found that they have a very hard time accepting assistance. Nurturers by nature, they’re used to offering support, but really struggle when they find themselves on the receiving end. Most caregivers don’t want to be a bother or appear the least bit needy, so even when people willingly offer, they have a natural tendency to smile and politely decline.
That doesn’t mean you should stop trying. Here are 5 simple things you can do to bring a smile to the face of the caregiver in your life.
- Wintertime is perfect for sharing comfort food. Just about anyone would welcome a crock pot of hearty soup or a steaming hot casserole. These things not only make for a wonderful dinner, but will likely provide enough for a few lunches as well. Other ideas: Next time you’re cooking a meal, double the recipe and deliver the extra portions to your friend with reheating instructions. Don’t cook? How about sending a gift card for a favorite local eatery? Be sure to take any special dietary needs into consideration.
- Would your favorite caregiver enjoy a relaxing massage? Consider going in with a friend to purchase a gift certificate, and present it along with a “coupon” offering to provide respite care while she enjoys an hour or so of pampering.
- Is your caregiver friend a member of the ever-growing sandwich generation? If so, make a play date with her kids. Perhaps you can pick them up from school for a movie and dinner, or how about a Friday or Saturday night slumber party with pizza, popcorn, and board games?
- No matter the season, most caregivers could use a little help around the house. Some ideas include shoveling snow, raking leaves, trimming, or mowing the lawn. Have you heard your friend mention any household “fix it” jobs that are screaming for attention? Maybe you and a few others can pitch in and hire a handyman service for an afternoon.
- It doesn’t get much easier than this! Next time you’re out, simply pick up a heartfelt greeting card. Write a personal note inside and put it in the mail. Everyone loves finding a card in the mailbox; knowing that someone is thinking about you during a difficult time can make all the difference in the world.
These are just a few things you can do for the caregiver in your life; there are lots of other ideas. Remind them to take care of themselves. Get creative! Bring them a new journal, a pretty indoor plant, or just a good cup of coffee and their favorite indulgent dessert. Not only will it make someone smile to know you care, but you’ll be fulfilling a need they may not have realized they had. Most importantly, never underestimate the power of a kind word or caring gesture, no matter how simple. I promise it will make a difference.
Thursday, June 4, 2015
I'd Be Lying
If I said I had never been in love
I'd be lying,
Sailing on an open road,
Beneath a blanket of stars,
Glimmering light reflect in our eyes,
Unspoken secrets dance in our hearts,
Whisper trust,
Between promising souls,
If I said I had never been in love,
I'd be lying.
If I said I didn't miss you
I'd be lying,
Mapping lines around your eyes,
Lost in the turn of your smile,
Intertwined and connected,
Your hand in mine,
If I said I didn't miss you,
I'd be lying.
If I said I didn't believe in you,
I'd be lying.
Between the grey and blues,
A night bird coos,
Familiar melodies floating in air,
On softness of moonlight,
I know you're there,
If I said I didn't believe in you,
I'd be lying.
Happy Anniversary, Baby. I miss you.
~Breathing~
Saturday, February 14, 2015
L O V E
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
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
Labels:
acceptance,
advocacy,
departure,
diary entries,
dreams,
evolution,
facts,
grief,
growth,
holidays,
independence,
life,
love,
memories,
our story,
poems,
pulmonary fibrosis foundation,
sharing,
surviving,
symptoms
Saturday, December 20, 2014
~~~A Pulmonary Fibrosis Merry Christmas~~~
Merry Christmas to You~
The One with Pulmonary Fibrosis fighting each day to live a life fulfilled.
The Caregiver, tirelessly assisting and supporting your loved one.
The Child, holding the hand of your loved one and letting them hear your laughter.
The Friend, who offers a shoulder to lean on and an ear to listen.
The Bereaved, bravely taking one step at a time forward, living to honor the spirit of their loved one.
The Doctor or Nurse, trying their best to understand and treat the symptoms.
The Researcher, searching to discover more about the causes and cure.
The Advocate, creatively seeking to spread the word about Pulmonary Fibrosis.
We All make a beautiful team, a family.
To You~ My Pulmonary Fibrosis Family may you experience the magical love of this season
in the most profound way.
Many more treasured memories with each day of the New Year.
~Breathing
Wednesday, December 3, 2014
Check Your Status~ Single? Married? Or, It's Complicated Grief?
If your like me and not sure which status to check, I found an interesting article that may add some helpful insight. ~Breathing
Thursday, November 27, 2014
Thankful
Thanksgiving Day and so much to feel blessed for~ I feel blessed for nature and all of its beauty, for kind people with warm hearts who are thoughtful of others, living a life full of adventure, laugher~ I love laughter, my children~ that they are creative and healthy, and that I am here~ still Breathing. I hope you have many reasons to feel blessed today Happy Thanksgiving!
Monday, November 24, 2014
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~~~
Labels:
acceptance,
advocacy,
awareness,
diagnosis,
evolution,
facts,
family,
growth,
independence,
life,
living with,
love,
sharing,
support,
surviving
Saturday, October 18, 2014
Tuesday, September 30, 2014
September Pulmonary Fibrosis Awareness ~My Wish
On this last day of September, having looked back at Pulmonary Fibrosis Awareness month, I can honestly say that this year seemed to be one of the most successful in spreading the word about this disease. I have seen posts full of beautiful people with streaks of blue in their hair, listened to songs with blue in the title, watched touching videos of personal stories, read facts and blogs. So many amazing people trying to do their part to let the world know how PF touched their lives; from patients themselves, to foundations, caregivers, friends and family members who lost someone to this disease.
In trying to do my little part to contribute, I can say that it often is not the easy thing to do. Can you imagine having this disease, yet posting and reading about the short life expectancy, or the terrible symptoms you may one day experience? Or, as in myself, and many others that have lost a loved one, to relive the experience with every bit of research you do or the moment you tell your story to someone else? It is not easy, but I see the strength of all of those who continue to advocate and I feel stronger, too.
It is my wish that our collective stories have touched and informed some of those who have never heard of the disease. That the general public becomes aware of Pulmonary Fibrosis and that one day, that awareness may lead to more funding for research and alternatives in medications, prevention, or a cure.
Tuesday, September 23, 2014
For the Caregiver~~~
With September being PF Awareness month, I just wanted to say a few words to all caregivers. Thank You. We see you. Many times you are behind the scene, making meals, filling prescriptions, researching, advocating, loving and caring for your loved ones every need~ physically and emotionally. Often ignoring any aches or pains that you may have, worries, sadness or sense of loss. Maybe you are feeling isolated and helpless to the situation you and your loved one are in. You are true warriors and your spirit shines through everything you do. Thank You, Dear Ones!
Thursday, September 4, 2014
Tuesday, June 24, 2014
Everywhere
For the man who wandered
Beautiful lost soul
So many places on the road
One of your words when we did part, was for me to move on
Put it to start
It was everywhere that you wanted to be
Most importantly, Inside of me
On my roams
I have seen the mountains
Seen the sky
Not a day comes that I don't ask why
Where you are needed to be
So far away from me
I sprinkle the dust like stars in the night
Watch as your beautiful spirit takes flight
Beneath my feet
Earth's ebony
Soft as a whisper
From my hands the powder blew
Sweet is the breeze
As my spirit flew.
~Breathing~
Dear Hubby, How am I doing? I hope you think I am doing alright. You said you wanted your ashes in some of the places we have roamed. But, I thought it was more of a joke, because you and I have been to so many places. I don't know how I would start to do that. I have tried in my own little way to fulfill your wishes. So far, in the last two years, you are in: Cannon Beach OR, Donner CA, "Lovers Rock" NV, Wrights Beach CA, Santa Cruz CA, Snake River ID, City of Rocks ID~~~~~~~~~~~~~~~~
Beautiful lost soul
So many places on the road
One of your words when we did part, was for me to move on
Put it to start
It was everywhere that you wanted to be
Most importantly, Inside of me
On my roams
I have seen the mountains
Seen the sky
Not a day comes that I don't ask why
Where you are needed to be
So far away from me
I sprinkle the dust like stars in the night
Watch as your beautiful spirit takes flight
Beneath my feet
Earth's ebony
Soft as a whisper
From my hands the powder blew
Sweet is the breeze
As my spirit flew.
~Breathing~
Dear Hubby, How am I doing? I hope you think I am doing alright. You said you wanted your ashes in some of the places we have roamed. But, I thought it was more of a joke, because you and I have been to so many places. I don't know how I would start to do that. I have tried in my own little way to fulfill your wishes. So far, in the last two years, you are in: Cannon Beach OR, Donner CA, "Lovers Rock" NV, Wrights Beach CA, Santa Cruz CA, Snake River ID, City of Rocks ID~~~~~~~~~~~~~~~~
Labels:
caregiver,
departure,
emotions,
grief,
growth,
independence,
life,
loss,
love,
photos,
sharing
Sunday, June 22, 2014
Sunday, May 11, 2014
My Forever Mother's Day Gift ~Pam Brewer
I was actually listening to the radio while working today for the first time since you left, Rick. I heard Trace Adkins singing, You're Gonna Miss This....it is so, so true. So, for Mother's Day, I want to just remind everybody that these times of busy~ness with your kids that just seems so hectic...it will very soon pass to never be again.
The times you are going to events with your children or grandchildren...or, running around to events with your spouse that seem so "busy"....they will be gone forever in the blink of an eye.....looking back, if I had it to do over, I wouldn't be so worried about the next work day and make sure I went to more softball games my daughter was in....or not had "work" on my mind when attending a baseball game one of my boys was in......they literally seem gone over night to me now.....Sitting in the stands as a mother with Rick and watching....going to their plays or to their concerts.....over now.....and Rick not even here to share this feeling now with me.
My parents, that were the best any one could have ever had..."my" mother....gone now too (and my father)....Please, remember....take..in...these moments!!!! They will be gone and not be able to be re-lived!!! I do have the memories....I cherish the times my Mom and Dad and brothers families and Rick and I and our kids, shared at the "river"...we didn't do anything special....we were together...joking around...visiting...living life..playing games...together......those are what NOBODY can take away from me....and nothing can replace! That, is my forever Mother's Day gift!
The times you are going to events with your children or grandchildren...or, running around to events with your spouse that seem so "busy"....they will be gone forever in the blink of an eye.....looking back, if I had it to do over, I wouldn't be so worried about the next work day and make sure I went to more softball games my daughter was in....or not had "work" on my mind when attending a baseball game one of my boys was in......they literally seem gone over night to me now.....Sitting in the stands as a mother with Rick and watching....going to their plays or to their concerts.....over now.....and Rick not even here to share this feeling now with me.
My parents, that were the best any one could have ever had..."my" mother....gone now too (and my father)....Please, remember....take..in...these moments!!!! They will be gone and not be able to be re-lived!!! I do have the memories....I cherish the times my Mom and Dad and brothers families and Rick and I and our kids, shared at the "river"...we didn't do anything special....we were together...joking around...visiting...living life..playing games...together......those are what NOBODY can take away from me....and nothing can replace! That, is my forever Mother's Day gift!
~Written By Pam Brewer
**Dear Pam, Thank You for allowing me to post your beautiful words that perfectly express the love that lives in a Mother's heart. May your day be blessed and Happy Mother's Day to all! ~Breathing
Saturday, April 19, 2014
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 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.
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!
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.
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
Subscribe to:
Posts (Atom)