Changing Outlook

     Today, driving home from yet another doctors appointment, I thought about my outlook on my life.  Many of you know, I choose to not always "update" or post about what my daily life is about on Social Media.   This is a conscious choice.
In the last 5 years, I've been more instrospective and not having anything to say on certain topics.  I realized that hearing my lung transplant team tell me there was nothing more they could do for me (5 years now), hit me mentally harder than I thought. Yes, I'm determined to prove them wrong, but it does take a toll on one hearing that kind of news.  A person never gets used to it.

     Why post about my daily struggles ? Because no one really needs any more to bring them down. Many choose to allow too much negativity in their daily lives already.
I see no need to be Social about my pain, and anything else that goes along with my many surgeries.
I would rather bear this Cross I've been handed with dignity, and allow you my friends to lift me emotionally throughout the day. That is what friends do, right ?

Plus my Momma always said, if you have nothing nice to say...... in the days of social media- keep scrolling. 

     I find that instead of letting my life get me down, I try to find joy in the simple things- EVERY day.
While I was waiting for my 2nd lung transplant & on oxygen (again), my day started with sitting outside on the step, with a cup of coffee welcoming the sunrise. I could have hit FaceBook with "I didn't sleep again !" or "I'm so tired and exhausted "  instead I find that positive ray of sunshine to brighten my day.

When Nelson drops his tennis ball while I'm eating, I get up and play a few minutes of fetch. My food can wait. Time with Nelson cannot. He's happy, it warms my heart and makes me smile.

My morning is best spent sitting in a lounger outside watching him wait for squirrely or chase lizards.  The simple things can bring so much positive into our lives.

 A simple touch from Larry, or one of his practical jokes warms my heart. It means more than any store bought item he could ever give me. It reinforces our life together, & gives me that much needed boost to keep fighting.

Laughter and smiles- that's the key. So let's stop the name calling, finger pointing, and hatred- life can be negative enough, right?

Closing for the day- Nelson is unhappily on the couch alone & needs loving..

Finally News I can Smile About !

As I mentioned in a previous blog post, I've been bleeding internally since 2013, in 2014 we found it was from my right lung. Yeah the bad one from my 1st transplant 24 years ago..
I guess after all this time, it has a right to protest the captivity :)

While my transplant team also sent me home in 2014 with the statement, there's really nothing more we can do, and I accepted it to a degree, I also decided this was my fight.  That being said after 3 long years of becoming thoroughly exhausted from that long 3.5 hour one way drive to Shands and waking at 2AM to do the drive......  My PFTs  have risen !!!  My lung function is better, not where I'd love it to be,but better. We lungers will happily take any good news we can get..I watched as  my lung function has steadily declined over the past years but three months ago it stabilized...   Insert brief hope here :)

This visit they are up a bit ! I'm feeling better, not where I would like to be , but enough to get housework, yard work, etc done at my own pace without massive fatigue and continual naps.
Ozzi may not be happy with me skipping an afternoon nap here and there, but I will certainly  make it up to him somehow.

I have stopped all nebulizers. The excruciating ear pain causing the worst case scenario of vertigo imaginable brought on that decision.  It will also save me close to $400 a month. I know I will go back on it sometime soon,, just not now. I also recognize that the summer months June, July & August are my "magical" months.. You know, the ones where I end up in the hospital and have to claw my way out. I am preparing for those months, and this year am determined they will be my friend- no hospital.After all, what is 3 measley months out of 12 anyway?

We transplant patients don't "bounce back" like healthy folks, mine took 3 years..

All my other issues are still with me, but this I had to shout. I have worked hard for this glimmer and I intend to celebrate !

Oh, and the best yet ! Kidney and Lung Transplant told me, they didn't know what I was doing- just KEEP DOING IT ...


Be someone's Miracle- Become and Organ and Tissue Donor

How Would You Like To Be Remembered ?

      Over the last few months, I've witnessed quite a bit of bitterness in the Social Networking Groups and Personal pages of friends. It has me worried. I keep seeing, "I don't want to die waiting". "I can't wait for my transplant so I can get off oxygen". " I need to be transplanted now!"  More often than not, I see posts filled with bitterness and anger. Is this how we want to be remembered?  Someone who was bitter to the end?  Or do we want to be thought of with warmth and thoughts of she smiled to the end...

Think about it....

After working in the medical field for years and witnessing a variety of emotions from patients, I made a solemn vow that the bitterness would not over take me. I would have no regrets.  One of the best things my transplant center did was stress...
1. You may not get transplanted.
2. You may not come out at 100%
3. You may come out and still be on oxygen.
4. Live your life NOW

I always kept this in the back of my subconscious.

If I didn't get my transplant, well I died trying and gave it my best- laughing to the end.
If I didn't come out at 100% or on oxygen- I would deal with it. It's better than where I was right?

I was also told to not spend what time I had left pinning all my hopes on a transplant. What was left of my life would fade away without me realizing it. I hope others take that to heart.  Too many times we focus on this pain or that ache and not living life.
Life is meant to live- no matter your limitations.. Enjoy your family outings even if from a chair. You are there.. Your family is overjoyed you are there too.
Those birthdays are so important. Many parties show me celebrating with the birthday person on oxygen. I have a wedding photo while on oxygen. This is my life and my memories !

I cannot let anyone take those from me, or not experience them due to bitterness. Refuse to let it consume you.

Point to ponder... If you pin every hope and dream on a transplant- what happens if you don't come out 100% ?

Finding Myself

I am once again sitting upright in my recliner (since 2AM) with the boys trying to yet again stop coughing. My lack of sleep does give me a bit of thinking time.

Looking back I seem to have left "me" somewhere.  I can just see myself at a roadside rest stop patiently waiting for me to come to the rescue.

I always had such determination, where has it gone ? My health has always been my health#1priority, but now I'm just tired.

I realize it's a culmination of events, and finding a way to jump the hurdle.  2002 was my 2nd lung transplant, giving me Blessed freedom from oxygen.  But I came home from the hospital knowing I would need a new kidney.
November 2004 I got the fistula placed in my upper right arm in case of dialysis (which was looming on the horizon. ). Taking 6 months to heal and "cure" put a dent in my exercise routine.
Just as it healed, May 2005 I got a new kidney!

My right abdomen groaned with each step.... no treadmill..
Many of my meds to protect my kidneys were now stopped, which created that heart disease rearing to be noticed. I got a pacemaker. No lifting, exercising,  etc for awhile. Then came SVT ....and heart ablation.  Again no exercise.
What followed through the years was a series of at home IV infusions for Pseudomonas in my right (old transplant) lung, ending with spending 9 months taking Levacquin 750 mg & Keflex 500 mg daily.  Both causing insomnia to the point I thought I was dreaming I was awake !

2012 was a bad year. Picc line for more antibiotics, plus more Levacquin (wonder if I glow neon in the dark yet ). Then a port to make IV's easier. And just when I thought it was now MY time here comes Keratoacanthoma and 3 months wait to have it removed. That is healed and in the past-so guess what is visiting now?

Most of my days are spent in a routine.
1. drink a bottle of water fast and hug the porcelain throne hoping to bring all this gunk out of my right lung, so I don't cough continually all day long.  And it's one of these gut wrenching coughs, causing teary eyes and abdonimal muscle cramps.
If I don't get it loose and away, it blocks my airways and at times making me gasp for air and choke. It doesn't help my biggest fear is suffocating. Not a good feeling to wake from a nice, peaceful REM sleep to gasping the rest of the night.

The loss of my lil Dibs has created another chasm to jump. My lil guy has been with me through it all, on my lap or laying next to me.  8 weeks and it feels like forever. I tear up just trying to type his name :(

So here I sit, close to 5AM now,  thinking how to reclaim Me again..
My middle man cuddled up close (a first, making me smile), I take a sip of lukewarm coffee, 30 minutes and my morning IV will be ready to start.  I 'll trudge to the counter, holding my left side-diverticulitis has chosen to pay me a visit, grab the syringes and IV  and start my day.

Live your Life as if you were a pencil.

A PENCIL MAKER TOLD THE PENCIL 5 IMPORTANT LESSONS JUST BEFORE PUTTING IT IN THE BOX :





1.) EVERYTHING YOU DO WILL ALWAYS LEAVE A MARK.



2.) YOU CAN ALWAYS CORRECT THE MISTAKES YOU MAKE.



3.) WHAT IS IMPORTANT IS WHAT IS INSIDE OF YOU.



4.) IN LIFE, YOU WILL UNDERGO PAINFUL SHARPENINGS,

WHICH WILL ONLY MAKE YOU BETTER.



5.) TO BE THE BEST PENCIL, YOU MUST ALLOW YOURSELF TO BE HELD AND GUIDED BY THE HAND THAT HOLDS YOU.





We all need to be constantly sharpened. This parable may encourage you to know that you are a special person, with unique God-given talents and abilities. Only you can fulfill the purpose which you were born to accomplish. Never allow yourself to get discouraged and think that your life is insignificant and cannot be changed and, like the pencil, always remember that the most important part of who you are, is what's inside of you.