Friday, December 31, 2010

Looking back... and looking forward

As the year comes to an end, I can't help but be in disbelief that the first decade of the new century is over! Where did it go?

Between the year 2000 and this past year, I have had a living-lobar transplant, kidney transplant, four sinus surgeries, and several other smaller surgeries. I have been very, very sick and also been through several recoveries. Although my health has had its ups and downs, and continues to have these, it has mostly been the ups that I remember.

My daughter has grown from a 5 year old to a 15 year old who is now in high school and is driving. She has shown us that she is extremely academically inclined, and as her personality has continued to develop, we have come to see just how driven, compassionate, and loving she can be. Every year with her has been a bigger blessing, and I can't imagine loving anyone more!!!

Unfortunately, these years have also brought along divorce, heartache, and many lessons to be learned. How thankful I am that God has been a part of all of that, and has brought everyone through this with a greater sense of thankfulness for the things we do have, and continue to receive.

Over the past 7 years, I have come to know many other people with Cystic Fibrosis, and many others who have had transplants. I cannot stress enough how important these people are in my life, and how close our bond has become. Knowing people from one end of the world to the other with this disease, has truly brought light to what others go through, and how everyone has a different story. It has been very enlightening for sure.

I also must reflect on how amazing my long-time friends are, and how, through my struggles, they have stood by me. They mean so much to me, and it feels so great that no matter how often we talk, whether it be weekly, monthly, or every 6 months, it's like we haven't been apart a day. Most of them are in Virginia, or scattered elsewhere, but distance most definitely does not dictate closeness.

My family, including immediate and extended, continue to be a rock for me. They never fail to be there when I need them (or even donate organs to me when I need them), and are always loving and understanding. Having the majority of my family at my 40th birthday party this year, was testament to just how blessed I am, and how awesome they are!!!

Finding my Jason has been a huge part of this decade, and has given me a soul mate with whom I intend on sharing the rest of my life, no matter how long! I am so truly blessed that I have found someone who is always there for me, and is my rock when I need it most. It was rough at first, bringing baggage from both of our pasts into this marriage, but as we continue to grow closer, that baggage seems more distant each day. Loving, laughing, and living seems so much easier with him!

As my struggles continue, to stay healthy and remain physically strong, I am surrounded by family and friends who love me so dearly. How blessed I am to have them in my life. To have YOU in my life. As this decade closes, I want to reflect on the positive things to come this next year, and the years after. I know great things are in store for my friends and family, and how thrilled I am to be a part of it all.

God Bless you all and Happy New Year!!!! XO

Tuesday, December 7, 2010

Lungapalooza: A Walk For Breath

On September 19th, 2010, the inaugural Lungapalooza: A Walk for Breath was held at Duke University Medical Center. The Lungapalooza is an event to raise money for the Lung Transplant Foundation, a non-profit organization who's mission is "to promote and advance research in order to improve long-term outcomes among lung transplant recipients".

Below is a slide show put together by Amber, a dear friend who has had two double lung transplants, and who was a major facilitator in making the Lungapalooza happen. The photographs were mostly taken by me and by another amateur photographer who works for Duke University's Center for Living.


Lungapalooza from Amber Wesemann on Vimeo.

Sunday, December 5, 2010

Brain zaps... no fun at all!

I write this, not so that my friends can laugh at me or question me, but I write it to educate others who are coming off of SSRI's. I am brain zapping so bad the past two days that I want to sit in a corner and cry. I have been on Paxil or Celexa many, many times in the past. Starting 10 or 11 years ago before my first transplant. I have easily tapered down and come off of them when the doc and I agree I'm ready. No problems at all!

The last time I came off of them, I had what people call brain zaps. You know... the things that some docs, some nurses, some lay persons call myths. After a couple of days, these zaps went away, and I wasn't bothered with them anymore.

THe VERY first time that I heard of brain zaps was from my husband trying to come off of Zoloft. He described them as a slight electrocution to the head everytime you try to move your head from side to side, and he also described them of the feeling you get in your head when you have a fever where you can't move your head side to side without getting a tingling/zapping/irritating feeling.

WELL, LET'S TALK ABOUT ZAPPING TO THE EXTREME!!!! I am currently weening off of Paxil according to my docs directions. It has gotten so bad that I just (literally) want to crawl under the bed and hide ... maybe for the rest of my life... I'm deciding. UGHHHH! It's SO bad. I cannot turn my head, I cannot talk, I cannot do anything but look straight forth. I feel sorry for those who's sig. others, family hasn't believed them. I'm so bad now, that J and C KNOW not to come around me. LOL. I am going to try to sleep after I finish crying, but I'm praying these things are gone in the morning so that I can have some kind of social life that allows my daughter and hub into my life again. THis is crazy, this is wrong, and to ANY DOCTOR who doesn't believe this happens... we all should record it.. It's NOT a nice picture!!!!