"Nunchuck Skills" - 5 Master Skills of the Chronically Ill

In all great Journeys and grand Adventures it's important to obtain and master certain skills. For example, nunchuck skills, computer hacking skills, bear hunting skills...

I love that movie.

But, seriously though, every day a chronically ill patient (for example, a transplant patient) wakes up we embark on a Grand Adventure. So, we also need to obtain and master certain skills. What kind of skills? That is what we are going to discuss in this blog post today.

Determination "a quality that makes you continue trying to do or achieve something that is difficult"

Some may refer to this characteristic as "stubbornness," but I find the word "determination" to be far more accurate, not to mention tactful. People who deal with different types of illnesses everyday develop a determination you rarely see in any other population. What builds these skills in us?

Imagine someone who has had the goal of climbing Mount Everest for years. They're now a hundred feet from the summit, only to be surrounded by a white out. They know the summit is so close, their goal at their fingertips, if only they can make it a little farther. They've waited all these years to make it! How determined do you think that climber will be to make it to the top? Pretty determined. Does he make it? Of course! He trained! He prepared! 

Now, take that story and replace it with you, or me. However, you're getting ready for work. Or school. Or trying to prepare dinner. Or beat your previous treadmill score. Your goal is so close! But you're surrounded by - some health related episode inserted here. Will you make it? Will you reach your top? Will you prevail and be victorious over your personal Everest? Determination. It's a skill we all obtain and master. 

Resilience "The ability to become strong, healthy, or successful again after something bad happens"

Setbacks. We all have them. Sometimes they can be out-right devastating. Being chronically ill in itself is a setback. Do you remember when you initially got the news of your diagnosis? Do you have more than one diagnosis? Resilience is the quality that you gain after having to stand back up again, even after you have fallen perhaps many times. 

After having my transplant, I had the impression that everything was going to be great. Even those around me did. But it wasn't. If I hadn't already developed the quality of resilience, I wouldn't have been able to climb over the mountains of setbacks that came after my surgery. I know there are many others who go through the same thing every day. This is the life of those who have to deal with Illness, and also those who care for those who deal with illness. Resilience is a quality we master. 

Patience "The ability to bear pains or trials calmly and without complaint, or to be steadfast despite opposition, difficulty, or adversity"

We wait on hold on the phone lines for nurses and coordinators. We wait to see those expensive specialists for months. We wait for prescriptions at pharmacies. We wait to hear the results from tests. We wait and wait and wait for transplants. We wait for cures. Those who are chronically ill develop patience.  But we don't just develop patience toward these mundane every day experiences. We're patient because we all have hope toward something. None of us could go on if we didn't.  Whether its the hope that at the end of a day of long appointments we get to watch our favorite movie with our best friend, or at the end of a terrible week of disappointing results of evaluation results we get to fly back home to see our grandchildren, or whether we know for sure that at the end of a trial-some life we know for a fact we will be rewarded with something far greater - we all hope for something.  And we can endure with patience with what we have to deal with for now until we are rewarded with it.  Patience is the skill we achieve with time - and master.

Flexibility "the quality of bending easily without breaking, willingness to change or compromise"

You're going about your life, minding your own business, and BOOM! Sick.  You're going about your day, trying to be a normal human being, and BOOM! Illness attack.  You're going to the Doc hoping for good results, and BOOM! Not so much.  So, how do you react?  SNAP! No way! Why? Because we are of a different breed. We are made of stronger stuff.  Those who are chronically ill are flexible.  We have already come to understand that life is not a sunny day in the park - sometimes it rains - and guess who's prepared with an umbrella? and a poncho? And an extra umbrella in case someone forgot theirs?  Yup. We are!  Because of our life experience we have learned that life can pull some serious punches, that's OK because we already know it's moves. We take bad news, unfortunate results, and setbacks with flexibility - because we're masters at it. 

Diligence "the quality of being careful and persistent at one's work or efforts"

Now, this Master Skill may not sound as sparkly as the other four, but it is just as important.  As the chronically ill, we are constantly at work.  I have had many people tell me that being a transplant patient is like a full time job, and it is!  I spend most of my days on the phone, on the computer, filling out paperwork (either on real paper or online), answering emails, talking to insurance companies, calling pharmacies, and the list goes on and on and on.  It never ends!  If my life was not organized, I think all the administrative stress would kill me before my diseases would!! We as a community show a very strong work ethic because of what we've had to deal with, some of us all of our lives.  We are responsible, organized, and hyper-vigilant in all we do. (Some may even call it "Type-A" or "Anal," but I prefer to use more attractive terms...)  We make good employees and organizers because we manage our lives well (and believe me - they do have to be managed).  We are all Super Masters of Diligence. You're Welcome, World!  Your most qualified group of Party Planners has arrived...

So, there you have it.  Now, you're ready for your Grand Adventure.  Did you know you were so well equipped?  With this set of 5 Master Skills, there's no way your Everest has a chance, now.  Climb on. :) 

Tough Decisions

Every day in life, we have to decide things. What do I have for breakfast?  What am I going to wear today?  Who will my friends be?  Am I going to have a treatment that will possibly stabilize this fast moving chronic rejection of unknown origin in my transplanted lungs, or that could possibly cause side effects and infections afterward that would kill me anyway?
I think the kids these days call that "Plot Twist!"
How do you choose between something that could possibly make your life infinitely better - or  disastrously worse?
When you're faced with a path that's not obvious to you, but the consequences of either direction are so different and so severe - how do you know what to do?
Robert Frost said he took the path less traveled and that made all the difference. That's all well and good in poetry, but somehow in real life I think it's a totally different story.
I've never been a huge risk taker, and I've never been a person to gamble.  Actually quite the opposite - I I typically have to know exactly where my next foot step is going to land before I take it.
My current situation is completely out of my realm. But, I suppose, deep down, I know that I have to do this. It's really not an option of yes or no. Not for me. So, because it's not a yes or no - it's just a move forward kind of thing – how do I motivate myself past the obsession of thinking about all the things that could go wrong? It's really hard not to think about the long list of risks. I suppose someone else would tell me to think about all the benefits instead. To focus on the positive. And I'm sure that that would drown out all the bad things and make me feel better about what I have to do. And that's good advice. And that typically works.
However, in this situation, I guess I feel that I'm choosing between death and death - and that doesn't feel like a good place to be.
You know that saying stuck between a rock and a hard place? This doesn't even begin to describe the way I feel laying in this bed right now waiting to start this treatment.
I'm trying to stay focused on my family at home.
I'm trying to think about the beautiful day that I had yesterday before I came with Leland and some of our "kids" from our local area at Boykin Springs, playing outside in the beautiful weather and watching them splash and laugh so happily in the waterfall.
I'm trying to think of all the people who need to hear about God and the hope of the good news in the Bible that I believe in and how it's my job to teach them.
I'm trying to stay focused on what I've learned in the past week about the gifts that I've been given and how I have a really keen ability to be able to help people even though I may not be physically able to do a lot of things other people can do.
So, while I'm laying here waiting to start this treatment and thinking about all the things that could go wrong and could be disastrous and could kill me, I'm trying to crowd out all those terrible thoughts with all the good things. And I know I will succeed.  Why?  Because I was shown through my family, my friends, through those I was able to help, and through the things I am sill able to do that I can.  Our strengths come not from what we can no longer do or comparing ourselves to our past selves.  That will only ever bring pain and frustration.  Our strength comes from focusing on what we still have, what we can still do, and nurturing and building that up to the best of our ability.  That is what will being you joy and strength and satisfaction.  Take it from someone who learned the hard way.
Right before my Campath treatment, I was in a really bad headspace, I would've never been able to handle it the way that I was. But through all of these different experiences (helping a friend, playing with my "kids," volunteering, writing cards and letters to others, baking cookies for disaster victims...) I was helped to get to a spiritual mental and emotional strength to be able to cope with right now.
So, that's how you make a choice between something that could possibly make your life infinitely better or disastrously worse. You pray, read, you talk, you listen. You feel. Then you have to have faith and trust that what you came up with is the right decision. And you can't go back. You just have to believe that you were guided to the right place. Then once the decision is made you have to fight with the stubborn determination that your life has put inside you. I have to believe that this is going to work and then I'm going to get back to my family, I'm going to be frolicking in that waterfall at Boykin springs with my "kids" soon again, have the privilege of teaching others, and doing what I do best. I must focus and believe. It will happen for me. It will.





How do you make the tough decisions?  Comment below, or visit me on my Facebook Page to join the discussion!

Why I fight

Over the years, I've had a lot of people ask me how I keep fighting, why I keep fighting.

Some people have even said that it's inspirational (as embarrassing as that is) to see me continue to fight for my life despite all the things that have happened to me.

Why do I keep fighting?  That's a very good question. 

In rare cases, when I'm in a particularly difficult place in my life, I've even asked myself that. But, typically the answers come easily and quickly to me when I'm thinking and meditating on my own.

So how do I respond to others? When asked why do I keep fighting, I find myself looking deep into the person asking, trying to determine how to best answer. I discovered that I'm answering in a different way every time I open my mouth to speak. Occasionally, I say my God, Jehovah. Other times I say my family, my friends, or sometimes my donor famil and my donor - wanting to live well for them.  Or then there's my message, my work as a volunteer to spread a message of Hope. And a time or two I even caught myself smiling and saying it was just to be stubborn - it's always different. 

Have I ever been caught in my cunning variance of replies? Yes. Why do I often give such different answers to this question? It's not for the purpose of deception or avoidance. 

Just because I have a different answer to every different person doesn't mean that they're wrong or that I'm lying. They're all truthful and they're all correct. Because the answer to the question why do I fight is this:

One more moment.

If I fight, I get another moment. Another moment on this planet with the people that I love to get to do what I'm purposed to do. 

Isn't that worth it?

So when a person asks me that all too familiar question I try to see and determine what they need to hear - basically what THEY need to fight for. And that's the answer that I give them. Because I am fighting for ALL of it. And if they hear it from me, maybe they'll realize a little bit more intensely what they could be missing and they'll fight for it too - their family, their friends, their purpose, their hope... maybe they'll even find the Hope for the future that I have found.

So, if you see me (or someone like me), ask yourself, what should you be fighting for? And really ask it. Look down, really deep down into your guts and find it. Then do something about it! Don't put it into the back of your memory, on a dusty shelf. 

Fight for it.

Fight for it every single day. 

Fight for it like it if you let it go for one second you'll lose it. 

Because maybe one day you'll be facing the prospect of it being gone and it'll be too late.

6 Steps to Post-Hospital Recovery - My "Happy to be Home" Routine

Hospitals, while necessary, are sad, disgusting, depressing facilities (for the most part). You know you have to be there, but the longer you are, the more you feel like you're not yourself, not a person.

That's why I have developed a "Happy to be Home" Routine, AKA "Back to Being A Person." It basically resets my system, making me feel as back to normal as I can, as quickly as possible. 

For example, this last stent of illness required two hospitalizations very close together. The first was 9 days, then only two sweet, wonderful days home, then back in the hospital 11 days. It was rough! I was SUPER HAPPY when I was finally able to go home. But, in really yucky post-hospital state.

The very next day after my discharge, I started my routine. I had a nice long, hot bubble bath. I shaved my legs (they had seriously gone Gorilla!), I washed my hair and left on a conditioning mask. Afterward, put on some really moisturizing lotion. My parched skin thanked me! Of course, just being discharged, that was all I could do the first day. Fortunately, this routine is of my invention, so I can do it however I want!

The following day, even though I knew I wasn't going anywhere, I took the time to carefully style my hair.  I painted my fingernails with a new nail polish I hadn't had a chance to use yet.  All the while, I listened to a new album of music that I had been waiting to hear.

Now there's also the practical side. I opened all our mail that had been coming in while we were gone. I made a list of all the follow ups I need to schedule, and made all my phone calls too. I hate having those things looming over my head, don't you?

Later that night, I helped my Mom cook dinner, and we all ate together as a family, and watched a Movie together.

All in all, it's been a good start to The "Happy to be Home" Routine, AKA "Back to Being A Person." I'm almost 100% back to feeling like Mia again.

So here's My List of things to do and accomplish when you get home from the hospital to help you recovery, and feel like you again in no time!

1. Wash the Hospital Off
    
    Whether it's a shower, bath, or whatever your favorite bubble time routine is - do it! Use your favorite shampoo and conditioner, yummy body wash, and don't feel bad to linger.

2. Look Like Yourself Again
    
    Coming out of the hospital, especially after a long stay, can change a lot of things, especially if you had to neglect them due to severe illness or surgery. Doing things to be myself again has always helped me feel more cheerful. Try fixing up your hair, putting on make up, or even dressing up! You don't necessarily have to be going somewhere - this is just for you, to feel like you!

3. Eat!
    
    Hospital food, although it's come a long way, is still overcooked, under salted, and sad. Now, if you're anything like me, I get stuck in a hospital-food-rut and I end up eating the same thing every single day. So, one of the first things that I do when I get home is to eat something that I really like. It gets the appetite back, and it makes you feel wonderful to know you've had a homemade treat. So, eat up!

4. Do Something Practical
    
    While not the most fun thing in the world, taking care of one or two of the more domestic things that you need to get done will help you to feel like you're getting something accomplished after being in the hospital for so long. Make a master to-do list, do a "brain dump", or simply open the mail. Why not go ahead and schedule your follow-up appointments? Your could also have someone help you to wash the clothes and blankets you had with you in the hospital. If you're anything like me though, just don't go overboard, because you don't want to overwhelm yourself when you've just gotten home!

5. Do Something Creative
    
    Doing something creative can have a stimulating and soothing effect on a person, all at the same time. I feel like this is an extremely important step to my routine. When I'm in the hospital, I often bring things to do with me, but I don't end up actually doing any of them due to feeling bad. (Besides, hospitals aren't exactly stimulating placesfor artistic creations.) However, right after getting home from the hospital, I feel like doing something creative really gets the inside out and gets me ready for normal life. This particular time, I chose to paint my nails because I had gotten a brand new color of nail polish that I had not used. I listened to music. I also made my world famous roasted brussel sprouts for our family dinner. But really it can be anything that you personally enjoy - painting a new picture, coloring in a coloring book, starting a new crochet project, or even cooking cooking a new recipe. If your stumped, try looking at your interests on Pinterest! They have thousands ideas, and it should really get your mind going.

6. Phone a Friend
 
    Being in the hospital is an unusual experience. You feel like life is moving very slowly, but in actuality, it's moving quickly all around you. People's lives are very busy. There is a tendency to lose touch with friends and also family members while there. So when getting out of the hospital, it's very important to re-establish those connections. YOU NEED SUPPORT! Call or text a friend or two that you haven't heard from in awhile and that would be encouraging to you. Why not be proactive and invite some friends to your house to see you? Being with those that really care will make you feel like you're at home again. In addition, encouraging words from those who really know you at heart can do a world of good for your recovery as well.

Now you know the 6 major steps of my "Happy to be Home" Routine. I hope the next time you're discharged, they will help you in your recovery, as they have helped me!

Mountainous Adventures

I have a saying in life  that I have  adjusted to social media  recently  called "mountainous adventures.". I like to use it to explain the wonderful, cool, or amazing things that I find myself doing every single day I have had since my lung transplant. Why do I bring this out so often?

I have found that a lot of transplant patients find pressure on themselves after their transplant to meet some kind of invisible standard. Specifically, an invisible standard of Awesomeness that they set upon themselves in order to be worthy of the transplant that they have received. It seems to me that this is of some kind of rite of passage to know and be comfortable with oneself after one's transplant. It's definitely a process of getting to know oneself again!  It takes some people longer than others to reach this point.



However, for me personally, I have found that to be worthy of my gift I don't have to climb any kind of mountains, run marathons, or invent some amazing product or cure. I don't have to make my mark and become famous in the world for some grand gesture. I simply have to be me - living my life in a way that shows appreciation and gratefulness for what I have received. In doing so, I can also bring awareness for the others that are still waiting to receive that gift. 

And along the way, I find the adventure in everyday life.

Yesterday, my niece and nephew discovered an actual mountain for me to climb! It was in the shape of a tube slide at the park. They wanted so badly for me to go in there with them! I wasn't entirely sure at first, but eventually I followed them inside that red hole to climb it from the bottom to the top! In the video I was taking on my phone you can hear I was completely out of breath -  this time, thought, it was not from a terrible end-stage lung disease, but from hilarious laughter! Pure fun and joy! It was a great moment, a great day. A Day to Remember. 




And that to me is living worthy of the gift that I have received. Living with joy, laughter, purpose, appreciation, gratefulness, love.

#mountainousadventures

Every single day. :)

Aunt Mia, Uncle Leland, Biscuit and Smoochie

Dear Fear

Dear Fear:

This is probably going to come as a shock but I'm cutting you off. I'm done with you. 

And guess what? It's not me - It's totally you!

I know you think we've got a rock solid relationship, built on time and shared experiences.  That's a nice thought, Fear, but it's false reasoning on both our parts. It's time to break free.

I know you've grown to be comfortable with me but I've never been comfortable with you. 

You're always there, getting in my way, annoying me, talking over me, whispering in my ear, and squandering my dreams. 

And today's the day we have The Talk. 

I am ending our relationship. 

You see, Fear, the thing is, you've become boring.  You and I, we've been together too long, I think. Remember how you used to come up with a lot of new and absurd things for me to be afraid of? But now its pretty much become predictable.  Some old thing, over and over. You know what you are Fear?  Boring, redundant, useless, and completely futile! 

I've made a decision. You are no longer going to be a part of my life. I'm not going to let you get in the way of what I want anymore.

Don't come around. Don't call me. Don't text. I'm even going to block you on social media - so don't try to internet stalk me either. 

It's over. It's so over. 

I cant have you impeding me anymore.  You've always been there, right in the way, slapping my hand from grabbing what I want, right when its in my reach.  Well I'm here to tell you, Mister, that I'm through with all that.  Your time is done.  Finished.  

And mine is about to begin.  

The Ravine

Sometimes life is overwhelming. You look around and all you see is bleak. It's like the darkness is creeping in from every edge, every corner, every side. You feel like you have nowhere to go. Nowhere to escape to. 

What can you do? 

Where can you go? 

Where is your escape?

Along time ago, in a land far away, a teenage girl and her little brother had a really bad fight. He ran off and she couldn't find him. She looked and looked for him because she wanted to tell him something before she moved away. She was leaving - moving off to college. She didn't want to leave without saying what she really felt in her heart. Now, they had bad feelings, arguments, and unspoken words between them.  But, the little brother hid very well. He played outside often, and knew all the hiding holes everywhere and he knew exactly where to go where she couldn't find him. But, she persisted and persisted and finally late into the evening she found him in The Ravine.

"What are you doing in here," she said. "It's dark, and the mosquitoes are bad down here. What if you slip and fall? You could hurt yourself."

"I'm hiding," he said simply. This statement was profound, and and she thought somehow he meant it to be so.

She could see him there in the dark, sitting on a large dead tree that had fallen across The Ravine, his bare legs dangling across the bare space. Fear struck her heart. 

She was so often afraid of things - afraid of hurting herself, afraid of getting sick, afraid of others hurting themselves, afraid of others getting sick, afraid of death. Fear, fear, fear - always there hiding in the background. Her Constant Companion.

And yet, she could see him there - that little boy, her brother - he had no fear. Or, it seemed to be so there sitting in the dark in The Ravine. She also knew that the words that she needed to say to him would require action. She would need to crawl there beside him in the dark, her legs also dangling across that bare space. This against her fear - that was what needed to be done. And so she went.

That seems so long ago now, this teenage girl and her little brother. The discovery of the fallen tree and The Ravine. A great lesson was learned there that day. It stands still. I remember it sometimes when I need to.

When life is so overwhelming and dark and bleak and it feels like the darkness is creeping in from all sides and the fear is so great that you can barely stand....

It feels like it's going to burst even from your own rib cage...

Out of your own being...

Out of your own heart... 

What can you do?

Where can you go?

It is then that I crawl through the dark, crawl through the mosquitoes, and the leaves and dirt and the moss and the sliminess until I find my broken down tree - and then I sit there in the silence of My Ravine.  

 And then in that silence that is not really silence, I realize that the fear is not so overwhelming, the darkness that is crawling in from the corners is really just a shadow of my own heart, and I am able to refocus and ready myself for another day in this amazing, crazy, terrible world.

Little Moments (A Letter To My Fellow Patients)

Many other patients have asked me what it's been like after my transplant.  I think they, having some kind of stereotypical image, think that every patient has had some kind of transcendental experience. How do I know this? I was one of them. So I'm going to give you some advice. The advice that I wish that I would've had.

After transplant, it's not going to be easy. You're going to have some really bad days. Some days you're even going to wonder "Why do I have to be me?" You're going to have some days where you wish you were somebody else. Frankly, you might even have some days where you wish had never done your surgery in the first place. It's just going to happen. This is not being unappreciative, it's just natural due to the incredible stress you are under.  It's going to be hard for you to come to terms with the fact that the stereotypical image of the transplant patient that you had in your mind does not exist. But, that's why they call it a stereotype. You are an individual, and you're going to deal with this process in your own way.

Now, on the other hand, you're going to have wonderful, beautiful, amazing moments where you're going to be so happy that you're still here to be with your family and your friends. They're not going to be transcendent, per say. They're not going to be obvious. They're not going to be the stereotypical moments that perhaps you had imagined in your mind - climbing Mount Everest or running a triathlon or coming up with some amazing medical invention that saves millions of lives. But, all of a sudden it's going to hit you that without your transplant you would not have been there to share in that little memory. Hold onto that, my friend. 

I don't know what it's going to be for you.  I do know what it was for me. Seeing my niece being born. Hearing my nephew learn my name. Having tea parties with my best friends kids. Planning renovations on my house with my husband and seeing them come to completion. Attending all three days of the Bible convention that I hadn't been able to go to for two years because of my illness. Doing art projects with my mom. Being able to do volunteer ministry work again in the area that I love with my friends. Little, tiny moments that are not obvious to any other person but you.  However, when you really sit down and think about it, those are the moments that you would not have been able to be there for without all the hardship you will go through with your transplant. 

So here's my suggestion. Make a list of your events and memories. Or make a folder on your phone with all the photos of little memories that you have of good times. Whatever it is that you can do that works for you to keep track of all the tiny victories that you have had. 

Subsequently, when you're having a really ugly, bad day, and you're thinking to yourself, "I don't know why I did this...," you can go and look over your list or look over your photos and you can remind yourself "this is why." This is why it's all worth it. And you can reinvigorate yourself to take another step forward. Step over the mountain and keep going another day. 

And that my friends is being a transplant patient. Because you're not just living for yourself but you're living for others. 

And that's what I wish I had realized from the very beginning and that's what I wish to pass along to you.

Well, I Used to Like Onion Soup...

One of the big things I have had to deal with since my bilateral lung transplant a little over a year ago is dealing with my new transplant body.  There are so many new and different things going on in there, it's often hard to keep track of it all.  Some are awesome (lungs breathing air, for example). Some are not so awesome (almost an infinite supply of random pains I never knew I could ever even  have).

Anyone that knows me knows that I like to over plan and over analyze, and that I don't react well to changes. Needless to say, finding out that your whole body system has literally changed overnight can be quite jarring.  

So, I decided I needed a plan. I was going to figure things out. I was going to sort out all of my new idiosyncrasies until I had everything tied up nicely, just like it used to be.

And it was. 

That was, until I was at a restaurant, holding a menu, and staring blankly at the waitress.  

I just couldn't decide. Which foods were even safe to eat? All my food safety rules were repeating in my brain. More questions were quickly flooding in, one after another. I didn't know what would be OK in my stomach, or which items would make me nauseated later. Would I like the taste, or would it taste like metal? When they presented the food to me, would the smell alone make me hate it? I didn't know which foods I liked to eat anymore, not really. Do I like French Onion Soup? I used to...

 "No, I don't know what I want! Yes, I need another minute!" Grr...

Food, however, is not the only change.  Shopping for clothes is another disaster. Truth be told, getting dressed every morning alone is itself a disaster. The body I had had for years, and had been used to dressing for years, is now very different. All the clothes I loved and felt comfortable in had to go. Things are tight where they should be loose (thank you steroid belly!) and loose where they should be tight (hello clamshell incision!). It's like starting over from scratch. And for a person who is already facing body insecurity (raise your right hand if you're a woman), having to deal with a completely morphing body is a little bit like going to sleep a kangaroo and waking up a cricket - you can still hop, but you know something's just not quite right. But, you just go ahead and hop along, cause that's what you gotta do. You're a cricket, after all.

And then of course there's all my new "sensitivities." Food sensitivities. Drug sensitivities. Chemical sensitivities. Fragrance sensitivities. Sensitivity to the sun. Sensitivities to this sentence.

Seriously though, since my surgery, my new transplant body has decided to become sensitive to so many products and items that I previously loved, and therefore had to stop using immediately or even throw away.  My friends and family have inherited some really nice products this past year though, so good for them! However, it is difficult when you're standing in the Walgreen's shampoo aisle for thirty minutes with your eyes glazed over, wondering if people around you think you've finally gone off the deep end.  It took a trip to the dermatologist to finally clear up everything on that front!

My new transplant body also doesn't have the right sensations. In the places where I should feel, like my fingertips for example, I don't. In other places, where I would rather not feel as much, the bottom of my feet perhaps, it's too much, to the point of having the sensation of walking on fire. I recently got a splinter in my big toe - oh my! I won't tell you what descriptive language I was wanting to use about that fiasco. (However, I did learn not to walk about on my porch without shoes, so lesson a valuable learned). I'm cold when everyone else is warm. And when everyone else is freezing, I'm burning lava hot! I'm so happy I can control the thermostat in our house from my phone. Which probably explains why everyone else is freezing... "Maniacal laugh, maniacal laugh."

My inclination to figure out my new life immediately hasn't worked out. I'm over a year out now, and I'm still trying to make sense of my diet, but everyday is progress toward a happy belly. Also, I find that Sarburst SuperFruit candy fixes just about anything that ails you.  I've purchased a few items of clothing that have made me feel better about my new self, and Pinterest has helped me realize that my body shape has gone from "pear" to "lean." They have some really great tips for dressing shapeless bodies on there! And I followed the advice of my doctors and WedMD about what to do about my sensitivities, and have found some relief. (No, not WebMD. Just kidding. Never take WebMD's advice about anything!)

Other than these very practical (and unpractical) ways, I also have found that the following things have helped, and may help you too.

Don't Sweat The Small Stuff

As cliché as it sounds, if you have had major surgery or illness, especially transplant, your body is going to go through massive changes due to medications and the general healing process.  Stressing over every little thing that is going on with you is going to effect how you heal, and also aggravate your situation. Let alone, make you feel worse overall! So, even though it will be hard, try and not focus on small problems. Let them pass. 

Allow Yourself to Laugh

Frankly, illness, surgery, transplant- it's tough! All these changes, the whole process, it's probably the most difficult thing you'll ever have to do. It may even be embarrassing at times. But, if you allow yourself to see the humor in things, and let yourself laugh, even if it's at yourself, things won't feel as dreary, even when they are. "Laughter is the best medicine." So, so true. And important. 

Rely On Others

When you think you don't recognize yourself anymore, someone else still does. Your spouse, your parents, your best friend.  When you need help figuring out an identity problem, even if it's as simple as what you want for lunch, rely on others. Your family and friends are there for you because they love you. Use them as a resource.  You'll be glad you did.

And When All Else Fails... Cry
Yeah, I said it. Cry! Why not? Who says crying is weakness? Whoever started that rumor obviously has never tried it because I'm telling you what - it feels great! Sometimes, you just got to get the inside out. And sometimes the only way that's going to happen is to cry. Cry, cry, cry and cry some more.  And afterwards, you'll feel better. You can pick yourself up, put your plan back into place, and try again.  Take it from a newborn, recovered repressed crier, it really can help.  Covering over how you really feel, and faking it for others all the time, even in front of those closest to you, will not help. It will only make you feel more frustrated about what is going on.  So let loose! Cry a little. Or a lot.

So, in conclusion, what have I learned about my new transplant body? I HATE ONIONS. I hate them. They are disgusting nastinesss. I do not like the way they smell, taste, and they make me so nauseated when I eat them that I pretty much want to die.  One thing down, about a million to go.  

March 6, 2015 - March 6, 2016

Since the day I had my transplant I've had many conversations with other patients who were past their one year date and what it felt like to be at that point. What it was like to be celebrating finally being over that infamous one year hump. They all have different stories to tell, about how that first year went, but it ultimately came down to the same singularity - appreciation.  And outside that overwhelming appreciation for an extra year of life that was unexpected, each patient expressed differing feelings and emotions.

Of course, I couldn't imagine what it would feel like to be one of them now.

So, here I sit, on the morning of my "lungiversary."  This is my one year anniversary of my double lung transplant. One year ago today, I began "a second life."  I was given a chance to live; to be a part of my family and my friends lives longer than we expected.  

When I think of everything that transpired on this day, one year ago, I am in awe.  Sometimes it overwhelms me to really think about everything that had to come together to make it work. 

Because of someone else's decision to be an organ donor, a selfless final act of kindness, my hardworking transplant team found perfectly matched lungs for me, with no time to spare.  My surgical team was amazingly skilled and performed a unsurpassed bloodless transplant, with very little complications.  You cannot find better or more skilled professionals anywhere else in the world.  These are amazing people, and it shows that they love what they do.  I view many of them not just as my nurses or doctors or medical professionals, but my friends.  

My family and friends were there every step of the way.  They never left me, never let me feel abandoned.  There were times that medications or sickness made me someone who I was not, but this still did not deter them.  Something as big and scary as transplant scares a  lot of people off, but I am surrounded by those made of stronger materials, and this process showed me that.  There are no words, or in fact any actions either, that will ever be able to show my family and friends what it means to me that they stayed with me through this difficult year. But, I know that they all know how special each of them are to me, and that I love them all so very dearly.

When I look back on this year, I feel as if I lived five years.   Maybe longer.  If I'm truly honest with myself, I feel like I've lived a decade of tragedies and hardships.  However, I've also lived a decade of victories and moments of elation. Talk about mixed emotions. When they say the first year of transplant is arduous, it's true.   But, if I do serious self-evaluation, I must also admit to myself that I am equally triumphant.  

I think because I haven't been able to climb a mountain, or run a marathon, or reach any of the other characteristically unrealistic goals I set for myself in the beginning, that I had failed at being a successful transplant patient.  I was comparing myself to other people, and that just doesn't work.  I have had a rough year.  I'm not in a condition to run yet.  (Who am I kidding, I will never run. Let's just clear that up right here.)  But, I will get to a point where I can do the things I have set out for myself. It will just take me a little bit longer to get that far.  And that's OK.  I need to let myself feel like it's OK to go at my own pace, and not feel I have to meet some preconceived formula of expectations.  Slow is fine, as long as you're still trying to move.

In the meantime, on my one year anniversary, I'm reevaluating.  I'm looking back over all of the tragedy/victory over the last year.  Which one won over? And what does that mean for me moving forward?

I choose to think that my successes, however small, will always trump my failures.  Therefore, I will win every time.  Moving forward, I choose to make this next year even better than the last. This will honor the sacrifices that everyone has made on my behalf - my donor, my family, my friends, my transplant team.

I may climb a mountain someday.  But, no running. please.  I don't run.

My Dermatological Journey

I recently took a trip to my transplant dermatologist, and learned some enlightening things, so I decided to share them with all of you.

Oh and I should mention that he took a GIANT CHUNK OF FLESH out of my ankle (see picture below) - which was not very fun.  Yet another reason to write this article, to warn you all, so that you do not have the same experience.

As my dermatologist mentioned during my visit, scientists have warned for millennia and that being out in the sun is not super awesome for mankind. That is, without sun protection. Being outside under the UV rays of the sun for long periods of time without any sun protection is very bad for you and your skin. Your skin, despite what you may think, is an organ, just like any of your other organs. We protect all of our other organs by eating right, exercising, drinking water, etc. So why wouldn't we want to protect our skin as an organ? We can do this by limiting our sun exposure and wearing sunscreen.  You can also do this by wearing clothing with sun protection in it, and by wearing hats to protect your upper body from the sun. There are many brands that can provide this protection. My dermatologist recommended a brand called Coolibar which can be found at coolibar.com.

As a transplant patient, there are other things to consider. For example, there are many medications that we transplant patients take that can make us more sensitive to the sun. Some of these medications are antirejection medication such as Prograf and CellCept. Other medications to consider that make you more sensitive to the sun are antifungal medication such as VFend and Cresemba. Even seemingly benign medication such as Lasix can make youat higher risk for sun related illnesses. 

During my visit to the dermatologist, since I'm on all of these medications, I found out that I was showing signs of phototoxicity. Evidence of this was showing up in my nails, rashes on my skin, and hair loss. This is a very serious condition, and needs to be treated by limiting exposure to the sun and high SPF sunscreen when exposure to the sun cannot be avoided. Of course, getting off medications that can cause phototoxicity or photosensitivity would be the best course, but this is not an option for most transplant patients. So, sunscreen and hats are the way to go!

The big thing that I learned at my visit to the dermatologist was about sunscreen. I had been using sunscreen, knowing that I was more sensitive to the sun. But I was buying the cheap, store brand sunscreen. The dermatologist explained to me that these brands of sunscreen have chemicals in them that interact with the medications that I was taking after my transplant. This in turn was basically rendering them ineffective, at the same time putting these chemicals into my body at a higher rate. I was very shocked to learn this! I had no idea that there was a difference in sunscreens. This was probably the most valuable piece of information that he gave me. And I was glad that he could give me recommendations on things to use that would be safer on my skin and for my body.

My dermatologist recommended several different brands of products to use for transplant patients. I would like to share them with you so that you can be prepared for this as well. These brands are also good for people who have sensitive skin, and skin conditions such as eczema and psoriasis. I have eczema as well, and the dermatologist said that these would be good to be using on my skin for that as well.

Vanicream Sunscreen SPF 50

CeraVe Face Wash / Hyrdrating cream

Aveeno fragrance free soap

Aveeno Skin Relief Body wash / Lotions

Free and Clear Shampoos and conditioners 

Well, that big giant hole in my ankle used to be a mole that I've had my whole life. It turned into bad, nasty, dysplastic cells. They're all gone now. And I'm free and clear. I plan to stay that way by following my dermatologist recommendations by limiting my time in the sun when I can, and when I can't, using my sunscreen and hats! I look good in hats anyway. 

Living Life, Instead of Documenting It

The last four weeks my social life has been very active. I mean, it just simply exploded. We've lived in Houston for over a year, and my husband, Leland, and I haven't had as much go on in our lives socially in that time as we have in the past four weeks. It's been nuts trying to keep up with everything, and make sure we're not late (yes, we've become those people), and also make sure I don't run myself to death.

But, it's also been fun. 

We've been able to spend a lot of time with our precious families and friends, some of who we haven't seen in a long, long time.

But, most importantly, in the whirlwind that has been my life, I have made some important self discovery.

I've always been the family photographic documentarian.  Snapping every important moment in the happenings of our life WAS my life. I wanted to make sure there was proof later.

Proof of what, though? Why did I need 117 pictures of a 5 minute visit to McDonalds on a Tuesday afternoon? How did I even fit 117 pictures into that span of time anyway...?

I needed proof that I was there. That that moment happened. That I was a part of that memory.  All 117 parts of it. Even if it seems insignificant to others, it was significant to me, and my camera was going to capture the proof.

Now, back to the past whirlwind four weeks. I recently sat down to take a look at all of my pictures, assuming I was going to have to cull at least 1200 to save some space. However, I had a revelation! There were not 1200 pictures! There weren't even 100. 

How did I go from taking 117 pictures in 5 minutes, to taking less than a hundred in four weeks - consisting of major life events, such as baby showers, family reunions, and hosting my first party since my transplant? Some major introspective meditation thus occurred...

After I returned from my "Mind Palace," I realized what was happening. I had taken photos of my choice favorite moments, but I didn't feel the need to take photos of EVERYTHING. I didn't feel the overwhelming need to have proof later, because I was too busy living in the memory right then.  I was there, in the moment, really experiencing things with the people I love, instead of worrying about what was to come, and if I would have enough proof of to last me when I wasn't there. Or to last them when I wasn't there. 

There's something about nearly loosing your life that makes you realize how you want to live it. 

Yes I know it's cliche. And I know there are a lot of you rolling your eyes right now. But, seeing less photos on my phone made me learn that about my new self.

I can live life now, instead of just documenting it. 

Let's Talk About Set-Backs

So, I deceived myself again, people.  I deceived myself into thinking that everything was going to go perfect after my transplant.  And everyone else was right there with me.  All running along under the "hunkey-dorey" kinda life sorta situation....

But, then reality hits in the form of set-backs. Bringing me jarringly down to earth. And by that I mean various infections, like C. Diff, E. Coli, and other nasty acronyms and abbreviations.

Trying to endure a recent pH Probe test

Or aspiration and reflux, for which there will be lovely potential gastrointestinal and abdominal surgeries in my future.

Or 40% loss of lung function, which I hope to get returned, but may not.

Or an increase in steroids, and all of that jazz.

But, I don't need to dwell.

The point is transplant patients, or lung disease patients, or diabetic patients, or fibromyalgia patients, or any kind of patient with a serious chronic disease will at some point experience a set-back in their disease treatment process.  And sometimes this will occur at a point when you do not expect it to happen, making it feel even worse that it already even does.

So what are we supposed to do about it?

I refer first to my previous statement: "But, I don't need to dwell."  I know it's hard, but for me, the first thing is to try not to overly concern oneself with whatever the set-back is.  If all I do is sit around researching and reading about whatever problem it is that I'm having now, it's only going to make me depressed, not to mention self-centered.  Yes, it's important to be knowledgeable and to be well educated about your health and whats going on with your body, but there is a point where WebMD is NOT your friend anymore. Believe me, I know.  We had to break up. More than once. So, let's not dwell. And let's try not to make other people dwell with us. It's for the good of the whole.

Instead, let's try to distract!  When I get down because of a set-back, I find distractions are the best way to turn myself around.  This is different for everyone, but here are some suggestions:

• Try a new recipe

• Take and arts and crafts class (There are free ones, too!)

• Get a new hobby, like crochet

• Go out for dinner at a new restaurant

• Have friends over for board games (Pictionary!!!)

• Play classic video games

• Themed movie night (ie; Black&White)

• Plant an herb garden

• Read your Bible  (Read it conveniently online here!)

• Write a new post in your blog (OK, that one is mainly for me...)

The best distractions are this - family and friends! As mentioned in a previous post, my group of friends and family are AWESOME! They work hard to help me with everything I need, and I would not have been able to go through this journey without them so far. I love each and every one of them! 

Something else that helps when you have a set-back is to focus on your spirituality.  The Bible says, "Happy are those conscious of their spiritual need" (Matt. 5:3).  I find that is so true!  When you have a set-back in your health or life, finding scriptures in the Bible that teach you about those who went through similar experiences, or simply have words that speak to your heart, just makes everything feel so much better!  For example:

"Therefore, we do not give up, but even if the man we are outside is wasting away, certainly the man we are inside is being renewed from day to day. For though the tribulation is momentary and light, it works out for us a glory that is of more and more surpassing greatness and is everlasting; while we keep our eyes, not on the things seen, but on the things unseen. For the things seen are temporary, but the things unseen are everlasting. "
 2 Corinthians 4:16,17

Another thing to help with set-backs is to try to keep moving. This is the hardest suggestion by far, and the one that I have to remind myself about the most. When you have a health set-back, the worst part about it is that you don't feel as great as you did! But try to resist the urge to be sedentary completely. I find in my case, that always makes it worse. Keep moving, even if it is a little bit, a little bit at a time.  Remember the picture above with the pH probe in my nose? I went all over Houston scaring the masses with that thing! Yes, people stared at me. Yes, small children ran away crying and were probably traumatized for life. But, I got a new pair of shoes, and almost forgot that thing was in there. Almost. I was walking all over the place, talking, laughing, carrying on as normal as I could. And when I got home I was so tired I went right to sleep, and the probe didn't even bother me. If I had sat home all day in front of the TV or tablet, the outcome would have been much different.

Yes, my friends, set-backs are hard. They're unexpected and disappointing. But we can bounce back my fellow sick-lings! We've made it this far  - "After all, tomorrow is another day." (Gone With The Wind)

Chick-Fil-A and Vanilla Coke

There is a famous saying, "You are what you eat."

If that's true, then my first semester of college, I was a Chick-Fil-a sandwich, large Waffle Fries (don't forget the honey mustard), and about four bottles of Vanilla Coca-Cola a day. They had a vending machine on every single corner.  Looking back, I really have no idea how I survived.

Between then and now, I had many major slow, and not-so-slow life changes that caused my delve into "health nut-ism," as some may call it. I try not to get on my soap box about it because I recognize that everyone has to make their own choices in life, and that includes diet. But, I have to say, that for me, eating a healthy diet has made a humongous change in my life, and I would love to share that with my readers from time to time if that's all right with you. So, fair warning, sometimes I will include little bits of interesting food or diet tips, or things I've learned along the way about vitamins or nutrition.

For example, did you know that quinoa is a complete protein? That's right! Quinoa contains all of the essential amino acids needed in the body. Quite a powerful punch for this tiny little grain, isn't it! It's one of my favorite foods! When you combine some cooked quinoa, corn, black beans, roasted tomatoes, bell pepper, lime juice, and your favorite Latin spices - it makes a quick and easy salad that can't be beat!

For those of you wondering, I hold to a vegetarian diet. I was vegan, or plant-based, for three years in the past as well. This diet works best for me and my husband. I find that it is the best for our digestive system, and helps keep weight down while on certain yucky medications like prednisone. I know these diets get a bad rap for not having enough calories or protein, but I believe this is when people do not do their research properly before starting these diets, and do them the wrong way. Personally, my transplant clinic encourages me to continue with my current diet.

Obviously, it is always important to speak with your doctor and nutritionist before starting any new diet regiment, and always, ALWAYS DO YOUR RESEARCH before jumping headlong into something new. This will ensure that everything is being done properly and healthfully. 

"You are what you eat." I am now purple cauliflower and asparagus and quinoa and sweet potatoes and tofu. What are YOU?

"I Climbed E-Rock" - That Overpriced T-shirt Will Be MINE

Once a week on Thursdays at the hospital, a special group of people gather together.  There, on the 4th floor of Dunn Tower, is the Heart/Lung Transplant Support Group.  I'm a regular there, and have been way before I was even listed for my transplant.  I credit a lot of people there for helping me to even come to the decision to stick with the whole process, sharing with me their very personal journeys, be it bad or good.  And now, as I am on the other side, it's my turn to pay it forward.

Recently, I was able to share with someone what I think has been my greatest piece of advice. Something that has helped me personally since I was admitted into the hospital in February and knew I wouldn't leave without my lungs, until now, trying to regain my strength after years and years of chronic illness - having goals.

It sounds mundane maybe, cliche even.  But, for me, having clear, set goals that I want to achieve in mind has been the greatest motivator to be able to overcome all the challenges of not only being a transplant patient, but being a person suffering from chronic illness, or just being a human being in a world challenging to live in in general.

Just think about it.  You wake up in the morning, pop open your eyes, and the first thing you think is, "Oh, great. Another day of nothing. No where to go. No one to see. Nothing to do."  What kind of motivation is that to get up and take your medicine?  Do you exercise?  Get stronger?  Be better?

But what about this:  You wake up in the morning, pop open your eyes, and the first thing you think is, "Oh great. Another day of nothing.  But, I'm going to run a marathon in two months... I'm going to ride the Houston Critical Mass next month.... I'm going to volunteer with Donate Life this weekend.... I'm going to climb Enchanted Rock when I'm strong enough.  I better get to work!"

Goals don't have to be grand in nature, either.  Mine started out as getting up and making my own breakfast, or putting up all my clothes myself.  The point is that you make a goal, and when you reach it, you've accomplished something you can be proud of, and that moves you forward in your life and health. Start with breakfast, and move on to the 5K.  It's all based on what you can do now, and where you want to go.

Goals. It might sound kinda stupid at first, but I'm telling you it works.  And yes, that bit about Enchanted Rock, that's all me.  I've tried a few times previously (even with oxygen in tow) and failed miserably.  But, soon I will get to the top. And I will buy the cheesy overpriced shirt, and hat, and bumper sticker, and whatever else that little shop down by the parking lot sells.  And you will hear me shout a victory cry from the top of the rock.  Cause it's going to be amazing people. 

April is Donate Life Month

April for the Transplant Community, is special. Why? Because April is Donor Life Month. It is in the month that we as recipients, team staff members, doctors, caregivers - everyone involved - recognize those that make all of these amazing and incredible things possible - the donors and their beautiful families. 

Throughout the month, this is done in various ways. There are walks and runs, charity events like galas and dinners, campaigns online to raise awareness, or even smaller events around the community to encourage organ donor registration. 

Last week, I received an invitation to The Methodist Hospital Celebration of Life. It's a very special event inviting the Methodist Transplant Community together to recognize the donor families and their special importance to all of us. 

Yesterday at support group, we talked about what would happen there. I've never been, obviously, because I just had my transplant last month. It's not like a marathon run or a gala. It's for our Transplant Family to get together and meet each other and donor families. The will be ceremonies of appreciation, speeches, and stories. The social worker there described it as, "very emotional." 

Just sitting here thinking about it, I imagine it as being "very emotional." 

I'm extremely excited about attending this event and feeling a part of this. Being able to see my fellow recipients, meet them and talk to them about their experiences and where they are in their lives right now.

But most of all, I look forward to being to meet and express myself (if I have the courage) to some of the donor families. I have not had contact with my own donor family as of yet, so being able to speak to them and maybe express to them a few of the things locked in my heart, those deep words of gratitude (although that doesn't even seem to be an adequate word, does it) would feel... 

Gosh, I really don't think there's really a way to describe it in normal human vocabulary. I think that's why it would take so much courage. 

Everyone that really knows me knows that since I was a kid, I cope with the stress of my illness through deflection with humor, and disassociation of just removing myself from a situation I don't want to be in, either physically or mentally, if necessary. Yes, I just admitted this to the entire planet. This isn't news, people. (Ah, there it is. Deflection.)  Now that I have my new lungs, I want to heal myself of all of these yucky bad habits, and feel and react like a normal person who wasn't sick her whole life would. I know this isn't an overnight thing, and will take work and time, but another thing about me is that I'm extremely stubborn and determined. That's why I've done so well so far with my recovery physically, add why I'll do even better with this part, too. Anyway, I digress.

I think I really, really digressed. Sorry.

I think, for me, expressing myself in this way will be healing. I have a deep, deep emotional gratitude for my donor and their family for what they did for me and mine. Without their gift, I wouldn't be planning for my future. I wouldn't have had one. Gratitude? Appreciation? Those words are tiny in comparison to what I think tansplant recipients really feel. What I really feel. 

So, April is Donate Life Month. How are you celebrating?