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 family. Show all posts
Showing posts with label family. 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.
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Saturday, February 28, 2015
5 Things Every Person Living with a rare disease understands ~Written By: Rachel Wilson
5 Things Every Person Living with a Rare Disease Understands
Most people have heard the term “rare disease” but far fewer can name a rare disease let alone imagine what life might be like for those who have one. When it comes to rare diseases, including rare pituitary diseases like Cushing’s disease and acromegaly, what’s truly rare is the kind of public awareness and understanding that people with a rare disease truly deserve.
Rare Disease Day, which falls on February 28, aims to spread awareness about these conditions and the impact they have on patients’ lives.
How rare is “rare?” On one hand, people with a specific rare disease are statistically few and far between – in the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. In the UK, a disease is considered rare if it affects fewer than 50,000. On the other hand, there are over 6,800 such diseases, according to the U.S. National Institutes of Health (NIH), so for something considered “rare” there sure are a lot of them.
In support of the rare disease community, Novartis will be launching an educational initiative called “A Day in My Shoes” which aims to tell the stories of people living with acromegaly. We spoke to several individuals for this post, and, as part of this effort to educate, they shared five things almost every person living with a rare diseases knows:
- Getting properly diagnosed is one of the biggest challenges. Rare diseases are so rare that the symptoms are often misunderstood and as a result, people with rare diseases often spend years trying to get properly diagnosed. In the case of acromegaly, getting a correct diagnosis can take anywhere from six to 10 years and for Cushing’s disease, it can take about six years on average. By the time they’re diagnosed, many patients are just relieved just to put a name to their symptoms.
- Your friends may know about your diagnosis, but only a few gems will really get what a chronic illness is or what it means. Many people are so uninformed about rare diseases that they expect your rare disease to clear up like a lingering flu. Blogger Rachel Wilson has Cushing’s disease, an endocrine disorder caused by a noncancerous pituitary tumor which ultimately leads to excess cortisol in the body. “There’s not a lot of empathy,” she notes. “Even some people that know me kind of get annoyed. ‘You’re sick again?’ or ‘What do you mean you can’t walk with us? But you walked last week!’”
- You choose whom to tell very, very carefully. Most people living with rare diseases agree that once a diagnosis is public knowledge, people treat you differently. “I want them to know I have serious health issues but… I don’t want people to look at me like I’m disabled,” Rachel explains. There’s a paradox that patients face – wanting to tell but knowing that the people they tell are likely not to truly understand without a lot of effort on their part to explain…and then still, they probably won’t get it like they do with more widely known diseases such as cancer or multiple sclerosis.
- Rare disease patients often play a large role in educating their doctors. Rare diseases aren’t just rare to the general public, they’re often rare to the physicians who treat them, even specialists. You’ve tried what seems like every available treatment, read medical journals, and done your own research. With all this, plus just living with the condition, you are the world’s foremost expert on how your rare disease affects you.
- People will try to cure you. Not just your doctors. Everyone. Your Aunt Sally swears by a green smoothie and its healing properties. Your son’s third grade teacher has these supplements you simply have to try. “Everyone knows everything about anything,” is how Rachel puts it. “People like to diagnose you, or treat you, or, since they heard about this on a TV show, they know it’s not as bad as you make it out to be.” Many rare disease patients feel that people equate “rare” to “not really understood by the medical community.”
And while some of these realities for people living with a rare disease may indicate that they want both privacy and just to be treated like everyone else, most are strong advocates for public education efforts. Cushingstories.com co-founder Rae Collins notes, “Educating was key. To help others understand the disease, for me to understand it more, to help doctors even understand what I was going through. The more people who understood in my life, the better it became to me.”
Check out Novartis’ The Voices of Acromegaly and Voices of Cushing’s disease, a three-part video series that feature advocates, caregivers and people living with rare diseases on the Novartis Rare Disease YouTube Playlist.
For additional information on rare diseases and Rare Disease Day, visit Rare Diseases: More Common Than You Think? or the Rare Disease Day 2015 website.
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~~~
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Wednesday, October 22, 2014
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
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.
Monday, September 29, 2014
Can I get paid to be a family caregiver?
In my particular state, I was told in order to receive a wage to be my husband's full-time caregiver, we would have to do two things: A) get a divorce B) live in separate homes. I really never thought that made much sense. Perhaps, your situation is different. The link below offers some good places to start if you find yourself caring for a loved one.
This site is wonderful for anyone who is a caregiver. Great information and support, so please feel free to visit them.
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
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
Sunday, March 30, 2014
And the dinner bell rings~
I had another blog at one time. It was fun for me to write and take pictures. The blog was a mix of Diners, Drive-Ins and Dives, with a bit of homesteading and frugal ideas, along with a good dose of road trips and reviews. I would often grab a plate of whatever was for dinner and take it to wherever the good lighting was in order to take a picture of it. Meanwhile the family would moan and groan sitting around the table as their food got cold while I did this. Once back at the table, we would all say a prayer of gratefulness for the food that was before us and dig in. Our family always sat at the table together and as I watched my husband and children attack the food, I felt a sense of accomplishment and worthiness. I had prepared something that made them feel good, that made them feel loved.
When my husband was diagnosed with Pulmonary Fibrosis, it became more difficult for him to eat. With oxygen blowing in his nose and struggling for every breath, eating became more of a challenge. For those who do not have this disease it might be hard to imagine how eating can become a workout. But, it was for him. Lifting the fork to the mouth, then the food entering the mouth and the chewing was a great task because he also needed his mouth to breath. It was almost as though food in the mouth was cutting off another part of his air supply. My husband lost weight even though he was eating regular meals and the doctors indicated that he was burning more calories in the action of eating than he was actually taking in. In addition, the fabulous and mouth watering seasoning that made my meals so rich and delicious, was also affecting his digestion. Often, he would struggle with acid-reflux after a meal and would have to stay in the sitting up position for hours while trying to digest.
I knew that my cooking had to change. It would be better for my husband to eat more soft foods that do not require a lot of chewing. He should eat small portions more frequently throughout the day, rather than 3 regular meals. The food should be more bland as to not give his digestive system such a challenge. This might seem like an easy transition to make although there were many factors that came into this change. I had a family to feed and the other members of the family did not have the same issue that my husband did. I also had placed an emotional value to the meals I made and believed that when I cooked for my family it made them feel loved. Even, health-wise, I believed certain meals helped to heal. We have heard the term Chicken Soup for the Soul, which indicates that Chicken Soup is soothing and healing. I also associated food as comfort, how many times had I downed a pint of Rocky Road ice cream after a bad breakup?
There are some with this disease that also believe that certain foods exacerbates the occurrence of inflammation within the lungs that cause the scaring of the lungs. That too many carbohydrates, the eating of processed foods is what makes this disease progress. There is not a lot of data to validate this idea as each individual may have different triggers to the progression of Pulmonary Fibrosis, although personally, I think there may be some validity to this for some; as a form of trying to slow the disease and if it is implemented early enough within the onset.
In my husband's case, the disease was so aggressive that he passed away a little over a year from his diagnosis and during that time, there came two points that he didn't want to eat: The first point was what I am describing above, that he was very much alive and wanted to live, although eating became such a task that it no longer had much appeal. The second point, was in the very last stage of his illness and is also a very natural state of dying. In addressing the first stage I had to be creative in finding easy to eat foods that did not cause him so much discomfort. And I also had to realize that my home cooking wasn't the cure for his ailment. These are some things that I came up with....
Whey Protein Shakes: A scoop of Whey Protein blended with one Banana and 1 1/2 cups of milk or water. I served it in a glass with a spoon, as it was impossible for him to use a straw.
Oatmeal: What a great way to get protein and nutrients and it can be made as thick or thin as desired.
Soups: He enjoyed many types of 'creamed' soups such as cream of chicken, cream of broccoli. I think it gave him that satisfied feeling of a home cooked meal. He also became introduced to 'Miso' soup and loved it very much. I would buy packages of Nori, which is dried and pressed seaweed, found in the Asian section of the supermarket. I cut snippets of Nori into his soup. It becomes very soft and can be swallowed without chewing.
Applesauce: He loved the feeling of cool applesauce in his mouth and throat. I would take zucchini and other vegetables, fully cook them until they are very soft, and blend them into the applesauce. Many times he did not know the vegetables were in there, until I was so proud of the fact I was sneaking them in this way that I had to tell him. He thought it was great!
Yogurt: My husband always hated yogurt and would never try a spoonful of yogurt the whole time we were married. When he got sick and it was hard for him to eat I begged him to try some. He did and literally after the first spoonful he said yes he would like yogurt more often. It was at the end of his life that he became a big yogurt fan. I think it really soothed his sore throat and was nice and sweet. It also helped his digestive system quite a bit.
Rice Pudding: He just loved my rice pudding, plain and simple! There are also easy recipes that include instant rice. He also enjoyed puddings from the store as a dessert.
Instant Mashed Potatoes: I normally used regular potatoes for this although as my role of a caregiver progressed as well as a mother and combined with working out of the home, my time became limited. Instant mashed potatoes is a lifesaver. It can be added with chicken broth to become a potato soup or it can be served as mashed potatoes with a bit of gravy or butter.
Corn Meal: I would take two cups of milk and add it with chicken stock, a little bit of butter and let that come to a nice simmer. Then slowly add the corn meal a little at a time, reduce the heat to low and stir until it become the thickness of a soft Polenta. I then placed a spoonful into the center of a bowl of soup. It has a comforting feeling to eat this and helps with nutrients.
Eggs: Scrambled eggs or even a quiche with very soft, cooked vegetables is delicious and required very little chewing for him.
Crackers and bread: These would be served with soups for dipping as they become very soft and offer more calories for someone drastically losing weight.
Pedialyte: This was a great way for my husband to receive electrolytes, which helps replenish the body to proper hydration. We would buy a bottle of this and add 1/3 to every glass of water.
Cream of Wheat: A nice alternative for breakfast.
Rice Cereal found in Baby Food Section: I did find myself in the baby food section of the store searching for more ideas. This depressed me a great deal to know I was shopping for my husband. But, the reward was I remembered that I used Rice Cereal found in that section when my children were babies. I often added a couple spoonfuls of it into their soft foods. I did the same with my husband. It can be added to the soups or applesauce, pretty much anything.
Herbal Tea: My husband became a great tea drinker at this stage. He loved blueberry tea, that was his favourite. It was soothing on his throat, helped to eliminate mucus and eased coughing.
These are some of the things we did to help assist my husband in his eating. I had to understand that as his personal chef ;) less was more. As a family we all had to adjust and more often than not we all had separate, individual meals at this point. I found myself buying easy things for the rest of us, such as sandwich meats and more soup. Many of the items above can be made ahead of time, or quickly. As things progressed of course the menu changed even more, although at this point, the items above were a big help to keep my husband eating and enjoying his meals without so much distress. I hope it helps you if you are dealing with this situation and if you have any further ideas that might help others, feel free to add them to the comments. With Love, ~Breathing
Friday, February 14, 2014
My Forever Valentine~ Written by Pam Brewer
This is my first
Valentines Day without my Rick. He always gave me such meaningful
cards...flowers...and always came up with special arrangements or colors of
"our" special meaning roses...jewelry, etc. But, the absolute most
important thing he has given me ever since I started dating him before we
married, was something he probably
never knew. You see throughout the years, when I'd travel either for business
or family...all the times I went to North Carolina to see my parents, sometimes
by myself in the 11 or so years they went there, or was gone all day on
appointments, etc.....you see what I mean....I'd think, "oh, I'm lonely or
I'm doing these things "alone"....well, I now know, I was never,
never alone....he was truly always with me and a part of me....I was, never,
alone!
He gave me the greatest gift any one could ever begin
to give another person! The "being together"...a part of another
person...If I was anxious to get home during the day, it was because of him. If
I saw something trivial that made me smile, I didn't even realize till now, it
was because I could share it with him. If we sat all evening and just once in
awhile reached over and grabbed each others hands, or smiled at each other, I
was so full and enjoyed that because of him.....in all these years...no matter
where I literally was on this earth, I never knew what being alone was
....because of him......Now, I "do" know what being alone is.....I
can't go there....no words....every single thing now, is
"alone"...even if I'm in a big crowd.....every little nuance or joy
has changed...
So, if you don't get the box of chocolates, or
can't afford to go out to eat at that special restaurant, "if" you
have that special person...you have THEE greatest gift of all....you are NOT
ALONE!!!! Thank you Rick Brewer for making it so that I knew not one moment, from
1968 till Oct. 21, 2013, of being ..."alone".......I had
"you"!!!!! I LOVE YOU, MY FOREVER VALENTINE!!!!
**Thank You, Pam, for sharing your heart with us on this Valentine's Day! My heart, filled with love, goes out to you. ~Breathing
Wednesday, February 12, 2014
I'm not here to answer your call right now~
After my husband passed away from Pulmonary Fibrosis, I could not bear to cancel his cell phone line. Talking on the phone was so much of our relationship, kind of like our life-line. He worked out on the road and while he was away, we called each other with every new day to wish each other a good morning. We called one another every night to bid a good night. We called each other in the middle of the day to talk about whatever we were dealing with at the time. It was a way to find out if we were safe and not a day went by that we did not speak.
So, when he passed away, my youngest child and I decided to leave his phone line alive. It helped us both a great deal. My son would often call his phone while having a hard day at school. Meanwhile, I would call my husband's line to wish him a good night or to tell him my car had broken down and I just needed to talk. We called his line every birthday, wedding anniversary and Christmas. On New Year's Eve, my son and I would dial into my husband's voice mail and put the phone on speaker and listen all the messages we had left. They were mostly tearful whispers and inaudible crying, but we could still make out the words we were trying to say.
I finally discussed with my son that we should think about cancelling his line. My son agreed. After all, deep down we knew that most of the time we talked to my hubby, it is through our hearts and not on a ten dollar a month phone line. We recorded my husbands voice mail message on another device and then I took the big step to call my phone provider and let them know.
The customer service provider apologized for our loss and indicated that we would not have to pay a cancellation fee for that line if the person was deceased and asked the date of my husband's death.
"December 15th", I responded.
"Okay" she said, "December 15th of 2013."
"No, it was actually December 15th, 2011." Realizing that two full years had gone by.
I began to explain why we kept the phone line alive and that I had not been ready to cancel it until now. She said that it was perfectly understandable and that she too, had dealt with the loss of her father and still wishes she could hear his voice. She cancelled the phone line with no issue and we ended up sending tearful wishes and blessings to each other. She was very kind.
I still have my husband listed on my speed dial. I can't imagine anyone else's name listed there.
So, when he passed away, my youngest child and I decided to leave his phone line alive. It helped us both a great deal. My son would often call his phone while having a hard day at school. Meanwhile, I would call my husband's line to wish him a good night or to tell him my car had broken down and I just needed to talk. We called his line every birthday, wedding anniversary and Christmas. On New Year's Eve, my son and I would dial into my husband's voice mail and put the phone on speaker and listen all the messages we had left. They were mostly tearful whispers and inaudible crying, but we could still make out the words we were trying to say.
I finally discussed with my son that we should think about cancelling his line. My son agreed. After all, deep down we knew that most of the time we talked to my hubby, it is through our hearts and not on a ten dollar a month phone line. We recorded my husbands voice mail message on another device and then I took the big step to call my phone provider and let them know.
The customer service provider apologized for our loss and indicated that we would not have to pay a cancellation fee for that line if the person was deceased and asked the date of my husband's death.
"December 15th", I responded.
"Okay" she said, "December 15th of 2013."
"No, it was actually December 15th, 2011." Realizing that two full years had gone by.
I began to explain why we kept the phone line alive and that I had not been ready to cancel it until now. She said that it was perfectly understandable and that she too, had dealt with the loss of her father and still wishes she could hear his voice. She cancelled the phone line with no issue and we ended up sending tearful wishes and blessings to each other. She was very kind.
I still have my husband listed on my speed dial. I can't imagine anyone else's name listed there.
Wednesday, January 22, 2014
AIR ~Written by Connie J. Tucker
AIR
I watch his
fear slowly diminish, but mine intensely grows,
As I watch him
breathe through a portable oxygen hose.
I suppose I
shouldn't be overly protective, overbearing,
But does anyone know who to call
for lung repairing? There is this waiting list, they call it that for a
purpose,
Lingering by to wait for someone else to die, a
donor circus.
Still that isn't enough, he may not fit the
criteria for a new lung,
Not healthy enough, not sick enough, replaced by
someone young. I try not to complain as he is so humble and patient,
I cannot accept his condition, as he is perfectly
complacent.
Its impossible to watch someone you love struggle
for air,
I looked to God for answers, and used to wonder if
he was there. I used to think that this is the work of some celestial scandal,
Then I remembered, God gives us no more than we all
can handle.
There is no room for blame, this disease has an
agenda all its own,
I only now pray that I had the strength that my
loved one has shown.His endurance is an avalanche of cascading strife..
Teaching me to truly breathe the oxygen of inner
life.
~Connie J. Tucker
**Connie J. Tucker is niece to Jeff Tucker and wrote this poem to express her feelings about him having Idiopathic Pulmonary Fibrosis. Connie, you are an amazing writer! ~Thanks to Jeff for allowing me to publish her poem. xoxo ~Breathing
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