Depression

The winter cold can loom down on people and give people the feeling that they may never see a summer's sun again. In Wisconsin, this cold can eat through the skin so fast that you don't know what happened - until, that is, your hand is swollen, bruised, and feeling like it is on fire. Did it start with the hand? I don't think so. That is not to say that I am in any sort of depressive state but with a couple of my friends in the hospital, fighting for their lives after being given a second chance at life, you wonder what tomorrow will bring.

Only days ago, I had created a new organ donation awareness design to sell in my Angel Cove store. I had sent an email to a lung transplant support group that I have been with for what seems to be decades, asking for their thoughts on the design. Most loved it but, of course, there is always one:

Shannon,
This design could go either way. It is catchy, but I still like
your first design with all the colors. That really caught attention.
Love,
Shana

Yep, I had asked for honest feedback and she gave it to me - as always. Tonight though, her thoughts are not on my designs but on being in the hospital for the third time this year. Shana and her husband Kurt are people that I met online years ago and instantly there was a bond between Shana and I. Don't get me wrong, we don't email each other every day - only on the days that matter most. That is what a true friend is - the person that comes in when the world has gone out. And tonight my friend is in a hospital room at the University of PA, fighting a clog in her lungs. (sigh) Ironically, her husband is sharing a seat that the rest of us caregivers have sat in too many times. The chair is lumpy and smells like ammonia - the hospital walls are bare - and the view is less than desirable.

It is times like these that I not only thank the good Lord for the blessings of health for my husband but that I fall into a small pit that was dug for me some time ago. You pray for the best and know that the pit is small but it can easily open up into a gaping hole that leads straight to the depths of hell. My stomach turns as I type this - I know that my husband can so easily be healthy one day and sick the next. What then? Should we live with our bags packed and ready to go to the hospital at any given moment? Alas, that would not be living. But the pit is nagging me - letting me know it exists - even during my deepest of prayers for my friend Shana. Yes, my friends, life is what you make of it and we have made a good life for ourselves. It is the unknown that scares me and with a terminal illness or an organ transplant, the unknown is always there and exists in great numbers. Being able to see past it takes a strength beyond what is conceivable to most - a strength that few have.

Please join me in praying for the health and strength of my sweet friend and her husband, as well as those out there that we may never know or meet.

~Shan
http://www.angelcove.us

That's Much Better

To awaken with the same pain that you go to sleep with is not only frustrating but can literally drive one batty. Nothing was working - not Advil, not massaging it, not even staying off of it. Ironically, staying off of it made it worse because when I would step on it once again, the pain would intensify. Needless to say, I had tried everything - or did I?

As I have already written, when Greg was at his sickest, I would be at my healthiest. So, as I awoke to the gnawing pain once again, I took a minute to collect my thoughts. In the pitch black of the early morning hours, with Greg still asleep, it finally came to me. As said in the movie Hook (1991):

Smee: I just had an apostrophe.
Hook: I think you mean an epiphany.
Smee: Lightning just struck my brain.
Hook: That must hurt.

I knew what I had to do - I had to live as though Greg was sick. Okay, so it sounds a little strange but I don't mean Greg has to get sick - I mean I have to do what I was doing back then that kept me healthy. For example, in order to deal with the stress of his illness, I would do Yoga for 30 minutes every morning before I did anything else. I have been doing Yoga since 1997 and love it greatly but there was never any time anymore. So, I got straight out of bed, closed the doors to both our bedroom and that of our lab pups (so they wouldn't start to cry if they heard me) and heading for our living room. I then turned on a small lamp, lit a candle, and took 30 minutes to meditate, stretch, and do Yoga.

At the end of this time, I had a clear list of the things I would do to help myself get healthier. I would increase my fruit and raw vegetable intake as well as my long needed water intake. I would do Yoga every day for 30 minutes in the morning and push aside a mountain of stress factors I have on my growing plate. As I stood up from my last Yoga asana (pose), a smile came to my face. Although slightly sore, the foot pain was totally gone. I was also able to flex my fingers on my right hand that had swollen overnight due to the small but painful hand rash I have (due to the harsh winter weather). I was not cured but this was the first step in a change that is not only long coming but necessary for my mind, body, and spirit.

~Shan
http://www.angelcove.us

Augh! Not now!

Over the years, I have gotten so used to taking care of Greg. I can tell when he is about to get a cold or when he has a fever - just by looking at him. Ironically, when he has been at his sickest, I have been at my healthiest points of my life. Why? Well, I cook better food for him and since hospital food reminds me of the cardboard that my hampsters used to gnaw on when I was a child, I would opt for the fresh fruits and salads that the hospitals would offer.

So, here we are - Greg is at the gym at the moment and I am home in the recliner. No, I am not lazy at all - just laid up. I am typing this with some sort of hand rash that has taken over the fingers on my right hand. I is most likely some sort of eczema due to the harsh winter we are having in Wisconsin and the fact that my entire body feels like someone put itching cream in my laundry. This is what Wisconsin winters do to me but that doesn't explain why I need to keep my feet up. You see, somehow, unknowingly, I have hurt my left foot as well. There is no outward signs of injury but it feels like I have a constant charlie horse stomping on it and when I walk on it, the pain is even worse. I have finally conceded to a couple of Advil and since there is no gym equipment out there that does not need the use of my hands or feet, I am home and stuck in the recliner.

It is amazing to me how well I care for Greg and how poorly I treat my own body at times. Okay, so the foot and hand thing may not have been preventable but nonetheless, I should be taking better care of myself. It is as though my brain stops working when it comes to my own needs - you know, those things that you must physically have in order to survive. No, Oreo cookies don't count and neither does a large Chai Tea Latte. Both, of which, I have consumed within the last week and in a larger portion that I should have. Don't get me wrong, I am no longer the 208lbs, 5'5" woman I used to be but a 140lbs, size 6 woman. But that doesn't make me immune to disease or trauma. What it does is cloud my judgment. You see, I believe that we were given everything we ever needed to live by God and a great deal of sickness comes from not giving our bodies what they need - that which was provided by God - fruit, vegetables, water, etc. So, why haven't I learned the lesson if I know how to make myself healthy? Plain and simple - look at my family and what I was taught. Indulge, you only live once. What is a small bite or two or three? Everything tastes better with fattening cheeses. The list goes on and one. I just wish someone would create a nag for me as good as my husband's wife. *wink*

~Shan
http://www.angelcove.us

Intimacy & Illness

When you enter into a relationship with someone that you know has an illness, you take on the fact that you may not be able to have a fully intimate relationship. Since I met my husband online, this did not become a reality until after I was already in love with him. It was only after we had our first intimate encounter, a long kiss, did I realize that some things may not be so easy for us. In all honesty, long kisses with someone who had a 60% lung function was literally taking his breath away. Pauses were necessary and coughing fits were frequent. As I respect our privacy in this area, I will not divulge more personal details but I am sure you can figure out that if a kiss made him have a coughing fit to where he was red in the face and trying to catch his breath, other things had similar if not worse end results.

We learned ways around the monkey wrench that his illness threw into our intimate relationship. As his lung functions started to fall, kisses faded. Luckily for us, our love endured this and sex was not the glue in our relationship. We respected each other for what we brought to the relationship and not for what it took away. It was the illness, Cystic Fibrosis, that was like a flat third wheel - but again, we leaned on our faith in God and our love for each other. Sure, instances like this can pull two people apart but we only grew stronger. What was our secret? Plain and simple - respect. We respected each other and as long as we gave it our all in life, our limitations would never be held against us. Yes, I admit that it was frustrating. Me, a normal and healthy woman in the prime of her life - yes, I wanted more intimacy but I realized that so did my husband. It was not for lack of wanting, it was for lack of physically being able.

He is now over a year post lung transplant and we have been blessed enough to bounce back from these moments where the illness had us jailed. The ironic part is that I now wait for his coughing fit to occur during those moments and then enjoy the moments even more when I realize that it is just him and I - no flat third wheel. Oh how two wheels are better than 3!

~Shan
http://www.angelcove.us

Our Past with Cystic Fibrosis

I was redesigning my website today and trying to make it as user friendly as possible. As I was updating the pages, I came across Diana's page. For those that don't know, Diana was 16 years old when she passed away from Cystic Fibrosis back in 1989. It took two years after she was born to finally put a name with her illness. Why have a page dedicated to this teen? Well, she is my sister-in-law - yet, sadly, I have never met her. She was Greg's oldest sister - 2 years older to be exact and it was only after Greg (my husband) was born with CF did they figure out why she was so sick.

The family doesn't talk about her a lot but I ask Greg about her from time to time. What was she like? Did you guys fight like siblings often do or were you close? How did you cope with losing a sister from the same disease that you, yourself, are fighting against? All the questions in the world won't give me back the chance of being close with my sister-in-law but it helps to remind me of the life she lived and the life the family lived. Back in those days, Cystic Fibrosis was still a terminal childhood illness and many children didn't make it through their teenage years. Alas, she was still a fighter and remembering her helps me remember what could have been for my wonderful husband and what we, and others, are fighting for. Yes, Greg has had his miracle transplant but he still has CF and we still fight to find a cure and stop the disease from taking another life.

You see, I couldn't imagine life without my husband. He is my miracle and although he is not my life - he makes my life more enjoyable. I pray that everyone could be so in love - and be able to survive everything that comes their way - together. So, keeping my sister-in-law's dedication page on my website reminds me of where we have been and how blessed we truly are. Yes, he still had to take medications and see a doctor because of his double lung transplant but there are no tubes on his face and nothing keeping him from truly living the life he was given.

~Shan
http://www.angelcove.us
http://www.cafepress.com/donorawareness

Giving to others

As I had stated in my previous post, I am not without the gift of gab. Shortly after I had written the post, it was placed on my heart to send "Calling in Life" out to two newsgroups that I frequent - Cystic-L and SecondWind: the former having to do with Cystic Fibrosis and the latter is a support group for those pre and post lung transplant patients and their families. I had no idea what type of response I would get back from such a sharing of my deepest feelings - I had actually thought that no one would even really read it. Alas, I was once again mistaken and it seems what I had thought to be my calling in life was exactly as I had predicted. In fact, I received a number of emails stating how the person was depressed that day or trying to figure out what their own calling in life was. They sat down to their computers and there was my email, talking about the abilities that we often overlook and how we should use our God-given talents to better the world and not aim to be that one person that finds the cure to some horrible disease when we, in fact, have no gift of medical exploration or the innate ability to even give the correct chemical formula for water. (okay, so I do know that one!)

To some, it was like a load of bricks hitting them and giving them a wake up call. To others it was an affirmation and a confirmation that they were doing exactly what they should be or overlooking the simplest of answer. Yes, once again, God has used me and my gifts to help others - even when writing my blog entry wasn't intended to do so. You know, when you just follow the flow and let things happen instead of always trying to make things happen, sometimes the biggest gifts are received. For me, it was those responses that proved to me that I am on the right track and still helping others in the smallest of ways.

~Shan
http://www.angelcove.us

Calling

People spend the majority of their lives trying to figure out what their "calling" in life is. They believe it needs to be some major thing in the world like finding the cure for cancer. Don't get me wrong - I would love to find the cure for cancer but God did not grant me with prize winning medical capabilities. So, I started to think about it: what is it that I am called to do in this life? Why can't I find my place in this world? What is this larger than life thing that I am supposed to do with my life.

Ironically it has been in front of me the whole time and I had to laugh out loud. I realized that most of us in this world are not meant to find that miracle cure but rather to add to the quality of other's lives in the best way we can - with the gifts that God has given us. We spend so much time trying to make life out to what we want it to be and crying when things don't turn out the way we want them. Ironically, we never look at what we have and how we can use it to better the world around us.

God has granted me with the gift of gab (for those that know me in real life, this is not far fetched at all! *smile*) and the gifts of creativity and logic. These gifts have helped me get through my life as a child and continue to live even though I wanted to commit suicide each and every day during my teenage years. It helped me realize that even though I didn't know how, I did know that life was more than what I was living at that time and that I was more than I was allowed to be at that time. It allowed me to escape into a world of art and yet kept me grounded so that I would complete not only a Bachelor's degree but a Master's degree as well. And, more importantly, it is what kept Greg alive when he was at his sickest - my mouth was his voice when he could not speak, my logic was what argued with the doctors when they told me he would not live and made plans for him to live rather than to die, and it was my creativity that has found ways around the disease and illness and kept me humorous even through the roughest of times - so that we could continue to have a strong marriage and faith in God.

No, my calling isn't over with just because my husband is now healthy; having survived a terminal illness and double lung transplant. My "fruits" have been put to the next levels of need - others going through such trials and tribulations. I am a team leader every year for the Cystic Fibrosis (CF) Great Strides Walk, I have an online Organ Donation & Transplant Awareness store (http://www.cafepress.com/donorawareness) in order to raise awareness of this great need and I am a pillar of hope for others that are going through what I have been through. My gifts have added to the quality of lives that I have never even seen. Strangers are living better lives because of my husband's medical trials that I have helped him live through. Strangers are wearing and displaying my organ donation products and raising awareness - who knows how many people have become organ donors because of 1 t-shirt someone has worn out of the hundreds that I have sold. Strangers are smiling and knowing they are not alone, because I share my experiences and knowledge with them. This is why I am here - those that say that they cannot make a difference in the world because they are just one person need to take a good look in the mirror and realize how wrong they are. I am just one person and my blood has saved lives, my tears have let others know they are not alone, and my willingness to give of myself has had a significant impact on this world. So, 1 person can make a huge difference in this world - even if they never know that person by name.

Valentine's Day

Happy Valentine's Day to one and all!

What does our Valentine's Day have in store for us? Well, I am just happy that the first words out of my husband's mouth this morning was "Happy Valentine's Day" with a kiss to follow. You have to realize that my husband never remembers things and if he does, it is usually towards the end of the day. For him to even remember this holiday, first thing in the morning, is a Valentine's Day gift beyond any other.

Okay, I have to admit that I would like a small token of his love. I know he already has a card but I am curious if anything else is in store. As I watch people in the office get their dozens of roses, I wonder if he would actually do that. Well, I know he would - he has sent me roses and flowers before but would he do that on this day of all days? I would be surprised if he did but hen again, I love surprises.

So, what do I have in store for him. No card - those just get tossed in the garbage a day later. *smile* I am planning on cooking him a different and great meal tonight for dinner and maybe a big red bow on his present. What is his present? I'm not telling! *wink*

~Shan
http://www.angelcove.us

Nervous

It is during times like these that we realize how precious life is. A few years ago, I had the pleasure of becoming friends with another wife of a man with cystic fibrosis (CF). She jokingly sent me an email stating that she was stalking me - having done searches for my emails on a cystic fibrosis online support group. We were similar - too similar. We were both married to wonderful men who happened to be stricken with this horrible disease. Both of our husbands were hanging in there but not doing so well. The emails went back and forth, even though we were only a few towns away. It was difficult for us to get together because ours husbands' could easily catch something from each other. My husband was listed for a double lung transplant and then her husband was listed as well - same hospital, same transplant team.

Her husband only waited 5 months for his miracle and mine had waited around 3.5 years. Why the difference in the waits? Blood type, tissue type, and size play a huge role and you learn patience.

Now, to the reality of life. I received an email from her stating that her husband was admitted to the hospital with 103 degree temperature and was put on oxygen. They believe it is pneumonia but with his fever still over 100 degrees and being kept on 4L of oxygen, it is a reality of how easily someone with a lung transplant can get sick. This is the reality that my husband and I live in and, of course, we both got nervous hearing this news. Not only for our friend in the hospital but for my husband. So, out comes extra doses of Purell, lots of vitamin C, and antibacterial wipes. Just goes to show that when given a second chance at life, one must do everything in their power to keep that miracle alive.

Bar Life

3.5 year wait and 5 dry runs later and my husband ends up in a bar. Yes, you read that right - my wonderful husband is enjoying his new life, for the first time since his transplant, in a bar. Why? Why not? It is Superbowl Sunday people! I do not care for football one bit. Actually I am a declared "football widow" and proud of it. My husband loves football and I can care less. I don't bug him about it and he doesn't bug me about it.

So, when he was invited to go out with the boys to watch the game at a bar, why not go? Yes, there is smoke but he doesn't go into a bar that often - maybe once every year - so he is more than capable of handling it. And, even with the medication, he can still have one beer. Am I upset about him going out while I am home with two sick dogs? No way! I want my husband to enjoy his life and he deserves to spend some time with his friends. The way I see it - we are married and part of each other's life but we are not each other's whole lives. So many people spend their lives trying to control other's ripples in the pond of life but it is when you allow the ripples to form and be free that true beauty is found and life is truly enjoyed.

~Shan
http://www.cafepress.com/donorawareness

Out in the Cold

For those that don't know, we are a two dog family - Labrador Retrievers to be exact. Our first was my present to Greg as a welcome to his second life after his transplant. We always spoke about getting a dog but my only requirement was that Greg's lung had to be good enough to keep up with the pup and be able to take care of it. Well, after 2 long walks in the cold with both of our lab pups, not a wheeze came from him. He was able to walk fast, keep control of our 85lb beast and even jog a bit when we parted ways for a while (our little one cannot walk as long as the big one). And, to top it off, he has a ton of energy tonight and hitting the taxes without so much as a little nap.

It wasn't that long ago that he would have to take a number of naps throughout the day because of his lack of oxygen. Even with 4 liters of oxygen, Greg would get winded at the slightest of daily tasks. It is times like these that I can only sit back in awe of this miracle.

~Shan
http://www.angelcove.us
http://www.cafepress.com/donorawareness

Stable & Peaceful II

It is a great feeling to have some peace and quiet in your life when only months before, your life was far from peaceful. With the news of Greg's great health, we were told there was only one small thing that wasn't that good and that was his Tacro (anti-rejection medication) levels. It turns out that somehow is it down to 3 when the normal range is 7-15. So, Greg now has to take 2mg in the morning and 2mg at night instead of his normal 2mg and 1.5mg. A small price to pay considering the wonderful gift of life he has been given with his lung transplant. In all reality, Cystic Fibrosis is a terminal childhood illness (or so it is classified) therefore he should not have lived as long as he did in order to get a life-saving organ transplant.That is where miracles are found. There is the miracle of life and the sharing of life and then there is the miracle of peace in one's life. We have had both and it is during this time that we are able to reflect on our lives and see how truly blessed we are. We, my friends, are truly blessed - not with money or material items but with life, peace, and love. What a true blessing!

~Shan
http://www.angelcove.us
http://www.cafepress.com/donorawareness