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.     

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

Pulmonary Fibrosis and Panic Attacks

Over the years, I have heard many people with Pulmonary Fibrosis mention that they experience severe panic attacks.  It seems understandable that this would occur because many have difficulty breathing as part of their illness.  When I Google or look up panic attacks, many of the writings are geared toward people who generally have these experiences, but I cannot find much in writing or resources that specifically deal with this occurring while on oxygen and having a terminal illness.  

Though panic attacks can be severely debilitating, it seems that much of the literature indicates to face the fears you have and realize that the percentage of them actually coming true is very low.  With Pulmonary Fibrosis, I think this does not apply, as often the source of the panic has to do with the fear of not getting enough air, which is a very real scenario to PF patients.

I remember my husband experiencing quite a few of these attacks.  Some where quite severe.  He would flail his arms in desperation of getting more O2, but in reality, he was pulling the O2 out of his nose and knocking down canisters.  Another time he was so desperate for more air, that although he had a portable O2 container turned on and in his noes, that he picked up the portable and began trying to suck air out of the handle itself.  It was very heartbreaking to see.

As a caregiver going through this with him, I had to learn to keep calm and be very deliberate in my voice and actions.  No rushing, although he was in panic mode, I could not allow myself to rush about the room. Why?  If his surroundings were chaotic during these episodes, it only made the situation worse. If he could not be calm, then I had to for the both of us.  

Touching him during this time had to be thought out.  Rather than rubbing his back, I would place my palm flat on his back and hold it still.  Everything had to come down a notch, including my voice.  Speaking in a low, soft tone can be more helpful rather than an elevated voice.    

Helping him to focus assisted in bringing down the heightened nature of a panic attack.  If he was scared he didn't have enough air, I would put the pulse-oximeter onto his finger for both of us to check it.  Getting him to look at it helped gain focus.  If his SAT's were low, I turned up his O2 and gently let him know they will start rising soon.  Let's watch them rise together.  

These attacks sometimes came during a coughing episode, or would bring a coughing episode on.  By the time they passed, all of his energy was spent.  It took so much out of him to go through this.  I wanted to minimize this happening and looked at the different scenarios in which they occurred in the past.  I tried to notice patterns.

I noticed that many of them occurred before his showers.  Showering becomes a difficult task for someone with PF.  The moisture and steam in the air, the use of your arms to lather, the slipperiness of the tub, the water on the floor, the energy used to dry off, all become monumental.  There was no such thing as a quick shower anymore.  Understanding that and blocking out an appropriate amount of time eased the task.  As a caregiver, making sure everything was ready for him also helped.

We were provided a slew of drugs while he was on hospice. One of them was a liquid dose of Larazapam.  This was specifically provided to ease anxiety.  In this form, it did help but was something that worked in only the short-term and the dose might be given several times a day, depending on what kind of a day he was having.  At first, when all this was new to us, we administered a dose during his panic attacks as a way to help him calm down.  As time passed and we recognized the patterns of his panic attacks, we realized that the best time for him to take this was prior to his shower.  Before he felt the anxiety.

Everything we did had to do with preventing them in the first place.  Thinking ahead of any given situation, allowing the proper amount of time and preparing in advance seemed to help the most.  As he changed, we were flexible enough to change the preparations to assist his needs.

Everybody is different.  One thing I noticed and found rather unexpected, was that Morphine worked the opposite than what we thought it would do.  We thought it would help with his pains and help him to relax.  It did help with pain, although I noticed a pattern with that as well.  His form was a liquid Morphine taken orally.  At first administration, he would become somewhat sleepy, so we found that, for him, taking it after a shower and lunch would allow for a nice little nap.  I noticed that after an hour or two, he would become restless in his sleep and literally wake up in a panic.  While he was at this period, he suddenly felt he needed 5 things all at once and at first, not seeing the pattern of his reaction to this drug, I would run around the room trying to satisfy his every need.  It took a little time to recognize this pattern and having something soothing for him when he awoke, such as a cup of tea, seemed to decrease this.  

I have also read that certain foods may increase the possibility of panic attacks.  Too much sugar or caffeine might bring them on more frequently.  

Much of this is written from a caregiver's standpoint, yet, there are many people with PF who experience this and do not have any assistance.  This can be very frightening.  It might be a good idea to visit with your doctor to discuss these attacks if they are too frequent, or preventing you from daily enjoyment.  My husband was not on an anti-depressant, although some people say that this has helped them a great deal. Having a phone near-by or discussing this with your friends or family may give you additional support.  Of course, learning to change your focus from what is causing the panic to something else would help, but is one of the hardest things to do.  

Here are some links that may provide further insight (I will put a question mark after each topic, because not all of these will be helpful to everyone, but, maybe there is one for you.)  Be sure to speak with your doctor regarding any questions you may have before starting medications or natural supplements.  

Meditation? 

Harvard Yoga Scientists Find Proof of Meditation Benefit - http://www.bloomberg.com/news/2013-11-22/harvard-yoga-scientists-find-proof-of-meditation-benefit.html

Tea?

Best Teas For Stress and Anxiety- http://www.doctoroz.com/article/best-teas-stress-and-anxiety

Points of Focus? 

How To Stop Panic Attacks- http://www.healthyplace.com/anxiety-panic/panic-disorder/how-to-stop-panic-attacks-and-prevent-panic-attacks/

Diet?  

9 Foods That Help or Hurt Anxiety- http://www.everydayhealth.com/anxiety-pictures/anxiety-foods-that-help-foods-that-hurt-0118.aspx

Pharmacy?  

Drug options for treating Anxiety/ Depression- http://www.webmd.com/anxiety-panic/

Herbal?

19 Natural Remedies for Anxiety- http://www.health.com/health/gallery/0,,20669377,00.html

Peer Support?  

Pulmonary Fibrosis Foundation Support Groups-  http://www.pulmonaryfibrosis.org/life-with-pf/support-groups

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. 

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

First Cut Is The Deepest

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

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

"I would have given you all of my heart

But there's someone who’s torn it apart

And she's taken just all that I had

But if you want I'll try to love again

Baby I'll try to love again but I know

The first cut is the deepest

Baby I know the first cut is the deepest

But when it come to being lucky she's cursed

When it come to loving me she's the worst

I still want you by my side

Just to help me dry the tears that I’ve cried

And I’m sure going to give you a try

And if you want I'll try to love again

Baby I'll try to love again but I know....."

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

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

(cat stevens)

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.

Twisted Knots

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

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

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

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

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

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

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

With All My Love....

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

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

Please take the time to watch! 

Love, 

~Breathing

Doodles From Grief Counseling

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

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

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

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

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

Understanding

Love

Togetherness

Your Eyes

Holding Hands

Your Smell

Our Music

Making Love

Security

Dreams

Our Travels

Companionship

Your Hair

Annoying You

Arguments

Making Up

Talking

Laughing

Your Eyes

Partnership

Advice

Safety

Guidance

Your Coffee

Sharing

Parenting

Trust

Comfort

Our Plans

*What I miss most of all and really can't be replaced is 

Our Chemistry

Love, 

~Breathing~

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. 

Never Throw Diamonds

The morning after my first date with my husband, I was on the phone with my sister.  Girl talk. 

"I can't believe I kissed him!  No, it was only one kiss.  Yes, I know he is practically a stranger, I barely know him.  You know I never do that!  I don't know what happened.  He's not even my type, he is like a cowboy or something....  All of a sudden, he just leaned over and we kissed!  It was a good kiss.  I haven't kissed in a year!  ((giggles))  No, I doubt he will call, it was probably a one time thing, hang on for a sec okay?  There is someone at the door......."  

"Sis?  Oh my God!  You will never believe who was at the door!  Someone delivering roses!  Hang on, let me read the card... It's from him, it says 'Thank You for spending time with me, Love, ~R."  "Yes, they are red!! There is one daisy in the center, they are beautiful!  But, the card said 'Love'.  Uh Oh, it was only one date and one kiss and the card says 'Love'.  No, I don't think he is a stalker!  I hope not.  I'll call you back!"

That was the beginning of all the roses.  He wasn't a stalker, but he did stalk me with a dozen roses every single week for a year.  We went out on several dates, sometimes we went on motorcycle rides, and that one time- I will never forget, when we got brave enough to karaoke for the first time.  I brought my purse up to the stage so we could dash out the door when the song was over.  We sang Leather and Lace. 

I was very reserved about us.  Since I had very small children, I made up a rule that he could not meet my children until we had dated for six-months.  I figured that was good time to get to know someone.  By our third-month together, he told me he loved me.  I never said it back.  Around Christmas time, it was our six-month mark in our relationship and I had fallen deeply in love with him.  That was when I had told him this.  We were right beside the Christmas tree and I gave him his gift.  It was a homemade present.  A picture and a frame.  He handed me my box and I shook it and it sounded like jewelry.  I opened the box and it was a lovely pearl necklace and earring set.  My eyes got all watery and I was so happy for this present.  Every girl loves to get jewelry from a man they love.  It's not so much the jewels as it is the thought behind it.  He laughed at me and I couldn't understand why, until he gave me a separate box, very exquisitely wrapped.  I slowly opened it and this time, I saw a diamond necklace and earrings.  This was a very serious present. I treasured the necklace and always wore it.

As the months passed, the roses kept coming.  I kept wearing my necklace.  I found myself unable to imagine this person not being in my life.  I wanted a future with him.  He met the children, and I met his.  We did everything together.  One day, in Spring, he suddenly told me that he was just going to move on.  We didn't even have a fight, he just told me it was over.  I felt so played by him.  This whole time, I was the reserved one.  I kept it slow.  What did I do?  I got very, very, mad.  Even more mad as I watched him getting into his truck.  I grabbed my jewelry box from Christmas.  The one with the diamond necklace and earrings, opened my window and threw the box out toward his leaving truck.  Then, I went to bed and cried into my pillow.  The end?

A few weeks passed, and I have to say, from all the times I thought I was in love with someone, I never dreamt about them every night.  But, I did with him.  Every single night I dreamt of him.  His best friend was my neighbor, and when we talked he said the only thing he could think of is that he got "cold feet".  After all, he was about 10 years older than me and was divorced from a twenty-year marriage.  Maybe, he just did not want to try again at this point in his life... I contemplated this.  If it was not meant to be, then it's not meant to be.  I felt regret for the box I threw out the window.  I still loved him and he still touched my life, I wished I still had something of his.  At the risk of looking like a crazy lady, I went to  all of my neighbor's homes asking if they happened to find a box of diamonds in the road.  No one had found it.  I even ran an add in the paper with a reward.  But nothing.

One day, I stepped outside to check my mail and saw his truck parked at my neighbors house.  How dare he even drive onto my street!  I then saw that he was in his truck and he pulled into my driveway.  He asked me to get in.  I remember it was sprinkling rain.  My heart was loud in my chest and I hoped he couldn't hear it.  He talked to me, he told me his fears.  He told me he was scared.  I watched the rain drops run down the window as he talked.  Then, he told me, "Happy Valentine's Day."  He handed me a box.  I unwrapped it and it was a beautiful rose-wood box.  So pretty.  I cried because the box was beautiful.  He laughed and said the box was not the present and to open it.  I opened the box and there was the earrings and necklace I had thrown into the road.  He explained that they are not the originals.  He had heard what I had done and went back to the jeweler.  They did not carry my necklace and earrings anymore.  He had them recreate an exact duplicate.  Who does that?  My man did. 

If you read my blog, many of our personal stories sound as though our Love was perfect.  I really wanted to write this to let you know that our love was not always perfect.  We had a lot of passion and with that comes ups and downs.  We grew together.  I always wondered who ended up with my original set.  It was a good lesson for me to learn as there were many times in our marriage that he upset me.  But, I never, ever, threw something from his heart away. No, our love was not perfect, but I can say, it was real. 

xoxo

Things He Did

Thinking about my husband today.  He had very soft blonde hair.  It was silky and curled around my fingers.  He kept it a little on the long side, the back of his hair just touching his collar.  He parted it in the middle.  I used to suggest he try a different part and he would let me play with it in the mirror.  I would try parting it from the side and we would just laugh and laugh because it just wasn't normal for him to look that way. 

I have mentioned his laugh lines.  They were fine and tender.  They gave the appearance of wisdom and kindness, framed around his knowing blue eyes.  A blue that was like the sky on a summer day, with little glimmers and sparkles, like when the sun catches on water. 

His hands and arms were very strong.  His skin was golden, highlighted by the light hair that glistened on his arms and down to his wrists.  I always thought he had very thoughtful wrists and I loved to rub my fingers along his wrist to those big strong hands.  We used to put our hands against each other's and his fingers would tower over mine.  This used to amuse him and he would say, "Just look at what a little girl you are!"  When he picked out my wedding ring and placed it on my finger for the first time, it was a perfect fit.  I wondered how he knew my ring size and he told me it was easy, he just tried it on his pinky-finger. 

Everywhere we went, no matter what.  He would jump out of the truck and literally run over to my side to open my door and let me out.  He always opened every door for me.  At first, I was not used to this, but over the years it became something I did not think about. I just got used to it.  But, I am sure he thought about it, since he was the one doing it and for that, I think it was very sweet. 

It was the same way when we walked together.  Most often, he would grab my hand and tuck it into the crook of his folded arm.  There were times when we were mad at each other.  We could be really, really mad at each other, but when it came time to walk somewhere I would wait to see if he would grab my hand, and he most always did.  There were a couple of times, he did not reach for my hand, so I would reach for his.  That usually ended our arguments.

When we dined out we always asked for a booth.  We always sat on the same side of the booth.  Even if it was just us, alone.  We could sit and talk, or sit in silence, but we always sat side-by-side.  Now, when I go out and see an older couple sitting on the same side of the table, it makes me smile and think of him.

At night, I usually laid my head upon his shoulder.  Never mind whatever happened that day.  The problems of the world just melted away, being lulled by his arm around me and the sound of his breathing.  When it came to actual sleep, we were not spooners.  We preferred our own little space in bed.  Just before the lights went out, even if I were half asleep, he would say, " I Love You" and kiss me.  Then we would roll over, facing in opposite directions; but our feet, beneath the blankets, always touched. 

His wedding ring, I wear beneath my own wedding ring.  It is loose and wiggly there, but my ring on top of it keeps it snug.  I do not know the etiquette of a widow wearing her wedding ring.  To me it really doesn't matter.  I think I would feel lost without it.