Showing posts with label kindness. Show all posts
Showing posts with label kindness. Show all posts

Sunday, November 22, 2015

Amazing Gift ~Written By Pamela De Loach

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

Monday, September 14, 2015

5 Ways to Help the Caregiver In Your Life Written By: Ann Napoletan

Article Via; Caregiver's Blog 
Written By: Ann Napoletan
If you think you are too small to make a difference, try sleeping with a mosquito.  ~His Holiness, the 14th Dalai Lama
It’s true – there are those who insist one person can’t make a difference in this world. However, having recently been through an extremely difficult time, I have to respectfully disagree. In fact, I can say with complete confidence that each one of us holds the power to do wonderful, often simple things that can categorically change the course of another human being’s day.
If you have ever tried to extend a helping hand to a caregiver, you’ve likely found that they have a very hard time accepting assistance. Nurturers by nature, they’re used to offering support, but really struggle when they find themselves on the receiving end. Most caregivers don’t want to be a bother or appear the least bit needy, so even when people willingly offer, they have a natural tendency to smile and politely decline.
That doesn’t mean you should stop trying. Here are 5 simple things you can do to bring a smile to the face of the caregiver in your life.
  • Wintertime is perfect for sharing comfort food. Just about anyone would welcome a crock pot of hearty soup or a steaming hot casserole. These things not only make for a wonderful dinner, but will likely provide enough for a few lunches as well. Other ideas: Next time you’re cooking a meal, double the recipe and deliver the extra portions to your friend with reheating instructions. Don’t cook? How about sending a gift card for a favorite local eatery?  Be sure to take any special dietary needs into consideration.
  • Would your favorite caregiver enjoy a relaxing massage? Consider going in with a friend to purchase a gift certificate, and present it along with a “coupon” offering to provide respite care while she enjoys an hour or so of pampering.
  • Is your caregiver friend a member of the ever-growing sandwich generation? If so, make a play date with her kids. Perhaps you can pick them up from school for a movie and dinner, or how about a Friday or Saturday night slumber party with pizza, popcorn, and board games?
  • No matter the season, most caregivers could use a little help around the house. Some ideas include shoveling snow, raking leaves, trimming, or mowing the lawn.  Have you heard your friend mention any household “fix it” jobs that are screaming for attention? Maybe you and a few others can pitch in and hire a handyman service for an afternoon.
  • It doesn’t get much easier than this! Next time you’re out, simply pick up a heartfelt greeting card. Write a personal note inside and put it in the mail. Everyone loves finding a card in the mailbox; knowing that someone is thinking about you during a difficult time can make all the difference in the world.
These are just a few things you can do for the caregiver in your life; there are lots of other ideas. Remind them to take care of themselves. Get creative! Bring them a new journal, a pretty indoor plant, or just a good cup of coffee and their favorite indulgent dessert. Not only will it make someone smile to know you care, but you’ll be fulfilling a need they may not have realized they had. Most importantly, never underestimate the power of a kind word or caring gesture, no matter how simple. I promise it will make a difference.

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

Blogger Rachel Wilson
Most people have heard the term “rare disease” but far fewer can name a rare disease let alone imagine what life might be like for those who have one. When it comes to rare diseases, including rare pituitary diseases like Cushing’s disease and acromegaly, what’s truly rare is the kind of public awareness and understanding that people with a rare disease truly deserve.
Rare Disease Day, which falls on February 28, aims to spread awareness about these conditions and the impact they have on patients’ lives.
How rare is “rare?” On one hand, people with a specific rare disease are statistically few and far between – in the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. In the UK, a disease is considered rare if it affects fewer than 50,000. On the other hand, there are over 6,800 such diseases, according to the U.S. National Institutes of Health (NIH), so for something considered “rare” there sure are a lot of them.
In support of the rare disease community, Novartis will be launching an educational initiative called “A Day in My Shoes” which aims to tell the stories of people living with acromegaly. We spoke to several individuals for this post, and, as part of this effort to educate, they shared five things almost every person living with a rare diseases knows:
  1. Getting properly diagnosed is one of the biggest challenges. Rare diseases are so rare that the symptoms are often misunderstood and as a result, people with rare diseases often spend years trying to get properly diagnosed. In the case of acromegaly, getting a correct diagnosis can take anywhere from six to 10 years and for Cushing’s disease, it can take about six years on average. By the time they’re diagnosed, many patients are just relieved just to put a name to their symptoms.
  2. Your friends may know about your diagnosis, but only a few gems will really get what a chronic illness is or what it means. Many people are so uninformed about rare diseases that they expect your rare disease to clear up like a lingering flu. Blogger Rachel Wilson has Cushing’s disease, an endocrine disorder caused by a noncancerous pituitary tumor which ultimately leads to excess cortisol in the body. “There’s not a lot of empathy,” she notes. “Even some people that know me kind of get annoyed. ‘You’re sick again?’ or ‘What do you mean you can’t walk with us? But you walked last week!’”
  3. You choose whom to tell very, very carefully. Most people living with rare diseases agree that once a diagnosis is public knowledge, people treat you differently. “I want them to know I have serious health issues but… I don’t want people to look at me like I’m disabled,” Rachel explains. There’s a paradox that patients face – wanting to tell but knowing that the people they tell are likely not to truly understand without a lot of effort on their part to explain…and then still, they probably won’t get it like they do with more widely known diseases such as cancer or multiple sclerosis.
  4. Rare disease patients often play a large role in educating their doctors. Rare diseases aren’t just rare to the general public, they’re often rare to the physicians who treat them, even specialists. You’ve tried what seems like every available treatment, read medical journals, and done your own research. With all this, plus just living with the condition, you are the world’s foremost expert on how your rare disease affects you.
  5. People will try to cure you. Not just your doctors. Everyone. Your Aunt Sally swears by a green smoothie and its healing properties. Your son’s third grade teacher has these supplements you simply have to try. “Everyone knows everything about anything,” is how Rachel puts it. “People like to diagnose you, or treat you, or, since they heard about this on a TV show, they know it’s not as bad as you make it out to be.” Many rare disease patients feel that people equate “rare” to “not really understood by the medical community.”
And while some of these realities for people living with a rare disease may indicate that they want both privacy and just to be treated like everyone else, most are strong advocates for public education efforts. Cushingstories.com co-founder Rae Collins notes, “Educating was key. To help others understand the disease, for me to understand it more, to help doctors even understand what I was going through. The more people who understood in my life, the better it became to me.”
Check out Novartis’ The Voices of Acromegaly and Voices of Cushing’s disease, a three-part video series that feature advocates, caregivers and people living with rare diseases on the Novartis Rare Disease YouTube Playlist.
For additional information on rare diseases and Rare Disease Day, visit Rare Diseases: More Common Than You Think? or the Rare Disease Day 2015 website.

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

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. 

Saturday, September 27, 2014

What Would We Do Without Support?

I wonder where I would be without finding the support of someone who understands?  ~Breathing

Find your support group by clicking the link below.  


Don't have one in your area?  Contact the Pulmonary Fibrosis Foundation and find out how to get started.  There are also many groups provided online.


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!

Monday, November 11, 2013

My Donor, My Hero ~Pamela De Loach

It was November 10th 2011: It was a normal day for the De Loach’s (expect for me who has IPF and has to wear oxygen 24/7, this is as normal as it get for us). Bob and Rob were off to New York and I’m off to work thinking about the day and the long weekend with my girlfriend who is staying with me while Bob is away. It was a normal day at work as I ate my lunch in my office because I do not have the energy to walk to the staff lunch room. Back in the classroom we start lunch breaks for everyone else, one of the students’ needs to go to the nurse for a procedure so the other aide leaves.

Whoever said your life can change in a second was right. The phone rings, it’s the office, Tampa General Hospital (TGH) is on the phone they want to speak to you. I politely ask if I can call them back; the voice on the other end says "No, I’m coming to stay with your kids and you have walk to the nearest phone with an outside line." It finally dawns on me what it was- “the call”.

I thought about “the family plan” developed for when the call came, but I was so excited and I couldn’t drive home. Some of the school folks offer to drive me to TGH. The new “family plan” is quickly developed: Rachel, Joshua, and Angela would meet me at TGH and my school buddies would stay with me until my family arrived. I arrived at TGH and the testing began to see if the donor and I were "the perfect match".
As we waited for the test results to come in, the doctors and I spoke to Bob and the rest of the family in upstate New York via Skype. Everyone was in a good mood and when my coordinator announces “IT’S A GO” the room breaks out in cheers and tears as our prayers have been answered.

The next hour is a blur, the family walks with me to the OR and we say goodbye. I really got scared in that second. The surgery started shortly after that and my new lungs are in on November 11th 2011.

My donor and their family are my heroes. In their grief they honor the request of their loved one and gave me a chance to continue on with my life. As we celebrate this second year, we have to remember my donor’s family. Please remember to check off that donor box on your driver’s license and tell your family your wishes.

**Thank You, Pamela for sharing your story with us!  What a beautiful gift that has been given. ~Breathing 

Monday, July 29, 2013

What Are We Going To Do???


Bags packed. Full tank of gas, Pringles, Jerky, Water, we were all set. My youngest and I hit the road. "Summer road trips are the best." I thought to myself with just a twinge of butterflies in my tummy. Tiny bit nervous as this time it was just the child and me. I could do it, I knew I could. My husband and I traveled all across the country together and I learned so much from him. Besides, we were only going a day's drive.

The trip went smoothly and we were making good time. The one part I was dreading was heading over Donner Summit. I had many scary memories of my husband and I going through the summit in a big rig truck. While the scenery is beautiful, we usually crossed that area when it was icy with snow. The lanes are small and the mountains steep. I calmed myself with the comfort that it was summer and I was not in a big-rig truck. I was in a 1998 Toyota.

On the last leg of crossing the summit, we were headed down a deep grade, when my car suddenly lost all acceleration. I glanced at my son who was safely buckled into the passenger seat, and then double checked to make sure that somehow we had not knocked the gear into neutral, which wasn't the case. At least I had my brakes. Coming off the hill, I made the last minute decision to pull off at an exit, which had a small ramp that went uphill. We coasted up the ramp to a stop sign. I pulled my emergency brake and turned off the car. We were up in the mountains on a tiny exit that lead to who knows where, not a person in sight. Now what? I stepped out of the car and lifted the hood. Hmmmmm. "What was I looking for?" I wondered. I luckily had cell phone reception and called the family members that I was going to visit. They were going to be about 2 hours before they could come get us. What was I going to do with my car? Oh, why did this have to happen? What would my husband tell me to do? I closed my eyes and listened to the breeze blow through the pine trees. "Husband, I wish you were here. You never did train me for this experience." I opened my eyes and caught the eye of my son, still sitting in his seat, buckled in. I knew what I needed to do...


Taking a deep breath, I called him out of the car. "What are we going to do, Mom?" He worriedly asked. "What are we going to do? What are we going to do??" I dramatically responded. He shook his head yes. "We, my child, are gonna take some pictures! Grab that camera! Look at how beautiful it is here!" I exclaimed. So that is what we did. We had the whole little place to ourselves. It was lovely.

Saturday, March 9, 2013

Water


When you were born, you were cleansed in it
Thirsty, you drank from it
Playfully, you splashed in it
In Sadness, it rained upon you
With Loneliness, it froze and drifted from the sky,
 Love, you threw in rose petals
Comfort, it gave you in illness
Spiritually, it renewed you
You, just like Water, slipped through my hands.

Sunday, October 28, 2012

Mr. Meticulous


In the years I have been with my husband, one thing became very obvious.  He was a meticulous man.  From his bathroom shelves, to his closet, everything had its place.  He wanted things done right.  He long told the children that it would always save them time to do things right -the first time- and if not, they would end up having to do the job all over again. 

I always liked this idea, at least the part that pertained to the kids.  But, me myself, am not always so meticulous.  My home may seem clean, as long as you don't open any closets or look in any drawers!  Many times, this theory of being meticulous was something that I had to work towards and as I did, I realized that it is just a matter of slowing down.  I noticed that my husband took enjoyment from what most would perceive as small taks.  Not being in such a rush to get a task over with, and to give the task full attention. 

Still, because of my husband's skill of being meticulous, there were just some things he was better at.  I remember one time, I wanted a small button sewn onto a silk robe, so the robe would stay closed.  I decided to hurriedly sew on the button.  When I did, it looked as if the button had been tied onto the pretty robe in a messy knot.  The button hung there loosely and within a few minutes, had already fallen off.

"I can't do this."  I told my husband while handing him the robe. 
"No problem."  He said, taking the garment.

He then sewed the button on for me.  It looked and fit perfect.  From then on, he became the Official Button Sewer and Hemmer in the family.  Same goes for any present wrapping.  My presents look as though I wrapped them with my eyes closed, while standing on one foot.  His, on the other hand, looked as though they came, pre-wrapped from Macy's.  So, on every birthday or Christmas, it became his job to do all the present wrapping.  He was the Official Present Wrapper.  The only thing my hubby asked for, in return, was big kisses!  Easy!


Halloween became his task as well.  During his off hours from work, he spent weeks in advance working on the children's costumes.  He made some fantastic outfits for the children.  He created cowboy outfits, biker outfits, head-on-a-platter outfits.  All, very meticulously thought out, down to the smallest detail.  My hubby became so involved in this part of his duties, that in advance he would arrange for time away from work, so that he could go to the children's school and help them complete their costume for the school's Halloween parade.  The only thing my hubby asked for in return, was a picture of him with our kids.  And, of course,  a kiss from me.


My hubby always took the children trick-or-treating.  He would load them into the back of our 4-Runner, and put the back-hatch down.  He would drive a few blocks and let the children jump out and run to the houses.  Then, back into the truck they jumped, onward to the next few houses.  They stayed out there doing this for hours.  At the end of the night, all would have runny noses and red cheeks from the cold and wind.  When they arrived home, they would find the house glowing with candles and lights, the smell of chili and cinnamon rolls.  They would dump their pillow cases, filled with candy, onto the kitchen floor.  Where my hubby would sort through and inspect each one for them.  The only thing my hubby asked for in return, was two pieces of candy from each child, and a kiss from me.

A couple weeks ago, our youngest child and I were walking through the store, looking at all the Halloween costumes.  I asked him what he wanted to be and he shrugged.  I shrugged, too.  We were both clueless as to where to begin.  It's three days before Halloween and we still do not know yet.  For now we are just going to wing it.  They sure do miss him, and I miss those kisses.

Monday, September 10, 2012


Today, I received a newsletter from our hospice company, indicating it has been 9 months since my husband passed and that they understand how difficult it has been.  Inside the newsletter was a lovely poem called....

Peace in My Soul

It was such an awesome day
And I stopped to stare at the sky.
My heart skipped a beat as I heard you speak.
When you asked the angel, "Why?"

"I wrote 'I love you' in the sky
As big and plain as can be
How can she stand down there and look up here
And still not be able to see?"

The clouds were broken and thin,
And swirled randomly through the air
I searched and strained at all that remained
Of the swirls of white still there.

The angel's voice was soft and low
As I smiled and raised a brow,
And I heard her say in the sweetest way
"She's starting to see it now."

There's a bittersweet peace in my soul
And a sense of awesome pride
Knowing you're up there writing
Words in the air,
And our love never died.

By Fern Lary Mills

Saturday, February 18, 2012

Are You Kind?

Today, I learned that it was the last day of Random Acts of Kindness Week.  I was at the library, checking out a few books and a young man was trying to exchange a $100 bill for a copy he had made worth 10 cents.  The librarian indicated that she did not have change for him on hand.  I knew I had about 1/4 of-a-pound of miscellaneous change somewhere in the bottom of my purse.  Most assuredly, I knew somewhere within the mix was at least a dime. 

So, I said, "I've got that in my purse."  As I fished out the dime. 

The man was so sweet, acting as though I was forking out a thousand bucks. 
It was no problem, I did have the change in my purse. 
The librarian, told me after the man had left, that it was Random Acts of Kindness Week and that I just did my part. 
She is a beautiful person, who wears a flower behind her ear. 
Very smart, of course- well read, and empathetic person, she is. 
At that very moment, she then announced that she noticed I have been choosing similar choices in books reminding her of a time that she chose the same books. 
She had dealt with the loss of a dear, loved one in the past. 
I just nodded, in agreement. 
Yes, I am checking out books about angels, the afterlife, and dreams. 

The librarian, with a flower behind her ear, then told me that when she saw me come in, she printed out a poem for me.  She pushed the piece of paper toward me and as I glanced down at the loving words of the poem, I couldn't believe
-the kindness.