Friday, December 25, 2015

WHAT CHRISTMAS MEANS TO ME!

Merry Christmas! We say it so offhandedly during the holiday season, often almost without thinking. And I say it sincerely to all who are reading this Blog. We mean it and we mean well. For many it is a religious celebration, for others not. But when we tell someone Merry Christmas it is usually meant as a happy greeting and I believe it is.

Since I got sick with that mysterious lung disease two years ago, got listed and waited for my lung transplant and then was blessed to receive the Gift of Life 13 months ago I find myself feeling much gratitude all the time. But most especially at Christmastime, I really feel the gratitude and very blessed to be able to spend time with my family and friends.

This is the first year I have been well enough to enjoy Christmas with my family. It has been and continues to be a very special day for me and my family. I have an appreciation for the gift I received and while I think of my donor often, today I have given a special moment quietly to myself to think of my donor with much gratitude. This is likely not as special a Christmas for his family as it is for mine and so I honor my donor and his family on this special day.  If I could see them in person, I would want to give them a hug and thank them for supporting their son's desire to be an organ donor. It has been and will forever be, the greatest gift I have ever received.

This is a special time of year already, as we all gather (when possible) with family and share gifts and be together. It's a time when we all actually stop and take the time to be with those we love and celebrate our traditions and families. 

For me, this is just magnified this year. 2015 has been so very special. I have continued to recover and work on regaining my strength and celebrate the One Year Anniversary of my transplant. And to be able to celebrate Christmas this year is so very special. 

At breakfast this morning we raised our juice glasses in a toast of Merry Christmas and I thanked my family for all they have done for me for the past several years. Now, as we enjoy some pre-dinner celebration, those who can have raised a glass of champagne, while I raised a glass of sparkling cider in a toast of the day. Merry Christmas! We are all sitting together on the couch, all squeezed in tight watching my niece's favorite movie (she is a movie major). It is a small thing, but two years ago it was something I was unable to do. Just to be able to sit with my family and enjoy what we like to enjoy is so very meaningful to me and I don't take it for granted.

It's Christmas Day! A day to celebrate the meaning of Christmas (whatever that means to you). But it's a special day to take the time to be thankful for those we love, thankful for all our blessings and even have some fun and exchange gifts and celebrate our family traditions.

I have a new tradition every day, but at Christmas it takes on special meaning. We exchange gifts at Christmas, but I already have the Greatest Gift of all. I got my Lung Transplant and I am alive to celebrate Christmas with my family. It is a great day and I am so happy to be able to sit with my family, reminisce about Christmases past, laugh and relax and enjoy the day.

Christmas has always been a special time for me and my family. It has become even more special since I received my lung. 

So on this Christmas Day, I give thanks most of all to my donor and his family. I give thanks to the medical team that has taken care of me and literally saved my life. I give thanks for a wonderful family that has gone above and beyond and supported me through the worst time of my life. I am blessed and grateful on this Christmas Day. 

I will work hard to keep this spirit in me every day throughout the rest of the year. We talk about that, many of us; keeping the spirit of Christmas throughout the year. I will do my very best to honor and remember the great gift that I have received. 

To all who have supported me and my family, I thank you. This is such a special day and I am lucky to enjoy it. 

Merry Christmas to all. May you all feel the true spirit of the season and enjoy your day however you celebrate Christmas!


Standing by our Tree!

"White Christmas" - Bing Crosby


Sunday, December 20, 2015

SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!

THE UPSIDE OF DOWN

I'm bound for a place called The Upside of Down
It isn't a city nor is it a town.
It's a chink in the darkness where the light filters in
Or the hint of a smile turning into a grin
I'm searching and seeking Oh! Where can it be?
An astonishing find - it is hidden in me.
The Upside of Down is the yes side of no.
It's just round the corner I'm ready to go.
I'll get there much sooner if I don't hesitate.
Now is the time - before it's too late!
For the Upside of Down will not come into view
If I don't lift my head and decide what to do.










Tuesday, December 15, 2015

THE GOOD, THE BAD AND THE UGLY!

It's that time of year when we reflect on that for which we are grateful. We spend time with those we love and share time and gifts, give to those less fortunate, put up decorations and enjoy the season. I am doing all those things. I am so grateful to be able to say that I have passed the one year anniversary of my Lung Transplant. This Christmas season is so very special for me this year. It's the first time in 3 years that I have been well enough to enjoy it. We decorated the house a few weeks ago and it made me so very happy and joyous that I was here and well enough to participate. Some nights I just sit in the living room, lit only by the lights on the Christmas tree and mantle with a smile on my face enjoying the decorations and feeling of the season. For the first time in 3 years, I have also been able to return to one of my loves of the season: baking. While it's still hard to stand for long periods of time, I have been able to bake up some cookies and make some candy and will gift them to friends and share with family. The sense of accomplishment of being able to bake this year is big. It made me very sore, but very happy!

That's the good!

Unfortunately, even after 13 months of recovery and working hard at rehab, I am not fully recovered from the transplant. I keep getting told not to forget what kind of surgery I endured and how long I was unable to move around and needed a wheelchair, which de-conditioned me so much that I could not stand unassisted. So rehabbing from that level of de-conditioning isn't going to come easy or quick. It's frustrating but I am determined to keep at it and keep trying. I am working with a trainer who put together a training plan for me that I hope will help me regain my strength and help with my breathing. I still can't climb the stairs to my bedroom without falling to my knees at the top and huffing and puffing to catch my breath. I want better. I'm impatient I know. The same was true of my baking for Christmas. On just one of the days I baked, I was on my feet for 5 1/2 hours straight plus bending over to decorate the cookies. My back was killing me when I was done and I needed a two hour nap afterwards. Even when I come home from working out with the trainer, I am exhausted and need a nap. Yet I still have no trouble sleeping at night even after a 2 hour nap. I am determined to work to get stronger and healthier. But in the meantime, it's HARD work to do so many things still.

That's the "bad".

Then there are all the side effects from the medications I have to take to prevent rejection along with other things. We were warned before transplant, but all these meds wreak havoc with our emotional stability so it's like being on an emotional rollercoaster. Well, I'm on it and I can't get off and it doesn't take much for the ugly cry to show up. I've also been very frustrated with communication issues with the transplant team regarding various issues. I am working this out, but it's been challenging enough to deal with everything being a transplant patient means, adding other outside frustrations doesn't help.

That's the "ugly"

But ultimately, I am doing well. Better than I think anyone thought I would be doing and for that I am blessed and grateful. Often people think we get our transplant and if you're lucky enough to do well and get discharged and you look so much better, people think that's it. I'm fine. Unfortunately that's not the case. While I am doing well, there is always something to deal with. Side effects of medication is a constant. Dealing with kidney function problems that require IV Saline Infusions for 3 hours 3 days in a row; having a white blood count so low I needed medication injections in my stomach three days in a row. Being so immunosuppressed that I have had to deal with multiple infections and viruses, fevers and the like. It's not easy. But it beats the alternative.

So I am so grateful this Christmas season and am savoring every moment. None of this would be possible without the support of my family and friends who have stood by me and supported me through the worst time of my life. You are all my rocks and I am so grateful you are all in my life and that I am here to enjoy time with you all. I'm having lunch with friends to celebrate over the next few weeks. Family time together for Christmas. 

I will probably write again on Christmas Eve/Day. But as the season is well underway, I wanted to write about what I am feeling during this special time of  year.  The good, the bad and the ugly. It doesn't matter. It's all good really, because I'm here.


Our Christmas Tree 2015!

Our Fireplace Mantle


"Mary Did You Know" - Pentatonix