Quick Coffee Update

I have some stuff I feel like writing about today but I wanted to give a quick "coffee withdrawal" update.

I was off the coffee Friday morning until...I was sitting on the couch, surfing the web and waiting for hubby to return from the store. When he comes home he says something (I forget exactly) and behind him walks my best friend from NYC, Elizabeth!!!! He had flown her in as a surprise for our vacation! I was stunned and thrilled and very touched. I cried and stared with my mouth open. It was the coolest surprise ever!!!

So...I fell off the wagon. I wanted some energy and I wanted some lattes with my BFF. I was back on the juice.

She is back in NYC, now, though and it is a new day. No coffee today, just a little tea. I feel more relaxed but sleepy. Not crazy sleepy though. Maybe I can do this thing! I have more hope now than I did last week...I did drive into my favorite coffee shop's parking lot around lunch and drove back out as an act of will power. Maybe I shouldn't be quite so optimistic! :)

From Cheating to Cold Turkey

Yesterday I started the day with a half a cup of coffee. I went to visit my mom two towns over and by the time I got there I had a headache and a cranky disposition. So, yes, I cheated. I drank an entire glass of iced-tea--no refills though. Almost immediately, I got sweaty and my heart started to race. I felt very queasy and had to go lay down. Could I be that sensitive to caffeine already? After only one day of dramatically cutting back? It seems very unlikely yet I can't really think of another reason for my physical symptoms.

So today, so far, cold turkey. It sucks. My head hurts and I'm in a fog. I'm drinking water and about to do some stretches to see if that helps. The question is, will I be able to get off the couch today? :)

Day 3 of coffee detox and still wondering if it's worth the withdrawals...

Truth is, if I don't feel better, and by better I mean human, by Monday (and the day I go back to work)...well. You know what I'm going to do, don't you?

Coffee Tears and Adict Fears

Part of our day of silence included a good meditation for me. Lots of good things came up, things which I hope to blog about soon.

The first one I wanted to address was my realization of just how much of a caffeine addict I have become. As much as I concentrated on relaxing, controlling my breathing etc...I simply could not get my limbs to let go of their state of tension. I live in this state of tension to varying degrees. It occurred to me, like a bolt of lightening, that this tension was partly psychological and largely physical. You see, I drink coffee like it's going out of style. How can a body ever relax when it is always hopped up on stimulants? It can't.

For the sake of my kidneys, my heart and my overall health, I decided this would be a good time to quit my addiction. I know from experience that on days when I don't drink coffee (usually the days I have migraines) that I sleep, sleep, sleep. Since I'm not at work, I thought this would be a good time to kick the habit and do what I needed to do to get my body back to a new normal. (I have been drinking coffee every day since college and have no idea how to function without it.)

I decided to wean myself slowly and start with only a half a cup. Compared to what I normally drink, that is pretty radical. It is my vacation, though, and I didn't want to spend the day with a caffeine headache.

I felt weird, all spinny and dull, but it was tolerable. Until I went to the post office. The post office had sent back one of my books that I had shipped out to a customer. The label on it said the package was too heavy, over 13 ounces, and needed to be sent directly from a Post Office. This made no sense, my book is 12 ounces and I ship them out all the time. I thought it was a mistake and would get it sorted out and send out another book. The exchange with the post office guy went someting like this:

Me: "Hi, I got this package back. I send them out all the time so I don't understand why. It's 12 ounces right?"

(He weighs the package) "Yes, but you have the wrong postage on it. It's 10 cents more."

Me, confused: "Oh, ok. I guess I forgot to put a second 10 cent stamp on it." Pause "I could have sworn that was the right postage."

Him, sarcastically: "It was, last month. The postage went up in MAY!"

This is when the woman working next to him breaks out into "what an idiot" laughter and just keeps laughing. Apparently, the fact that I didn't know this is so ridiculous and funny, she can't control herself.

From that point on, I assumed the posture of my 6-year old self being tormented on the playground. I barely spoke a word as he told me over and over "It changed over a month ago. Yep, it went up 10 cents in May, that's over a month ago..." and on and on. I rushed to my car after paying him 20 cents and was able to hold back the tears until I got in the driver's seat.

I cried all the way home. I mean cried. Ugly cry. Not just a tear or two.

This may sound strange, but I knew it was the lack of coffee pulsing through my veins that made me so vulnerable. There is a wall of confidence and energy that coffee gives me. Had I had my normal dose of caffiene that day, my reaction to the post office people would have been either a passing annoyance or great amusement at thier superior attitudes about a 10 cent stamp. Without my coffee wall, I felt raw, vulnerable and stupid. I had trouble recalling my worth and was a 34 year old version of my child-self. The only thing that kept my head above the despair in my chest was knowing that I felt this way because of was withdrawing my crutch.

Since then, I have been listening to my thoughts and observing them. I have watched enough "Celebrity Rehab" and "Intervention" to know that a person trying to kick an addiction often thinks thoughts that are not really their own, they are the thoughts of the addiction.

Things like:
"Is it worth losing your quality of life for this? Let's say drinking caffiene does have a negative effect on your body--is it worht this? Wouldn't you rather die earlier than live like a zombie?"
"All of the women on your mother's side are lethargic. You get it from them. Of course you are adicted to a stimulant! You need caffiene just to function like a normal person."
"You will never be able to do a good talk again without coffee to pump you up."
"You will never feel passionately about anything again. Without coffee, you are bound to a life of mediocrity."
"Everyone has a vice. This is yours. What's the big deal?"

Pretty bpowerful stuff, huh?

I will admit, the adict thoughts make sense to me. Why bother with this? I'm not going to pretend I'm committed to this. I don't really know how important this is to me. I'm still working it out. Today, I had a half a cup. We'll see what tomorrow brings.

I'll let you know how it goes...I just hope the days of coffee tears is over--that was annoying!

Not Quite Monk-Like, but Interesting Nonetheless...

This week hubby and I are on vacation! Yay! More accurate, we are on STAYcation. Between our thin wallets and our very, very old dog, going out of town just didn't look possible. We decided instead to stay home and indulge ourselves in eating out, movies etc and, of course, not working.

As we were talking, it became clear that a big goal for both of us was to "detox" a bit--me from Jibber Jabber and hubbs from constantly surfing the web.

I have found, as an introvert, that a "successful" public speaking career will require conscious balance. After a week or two of public talks, I get so sick of hearing my own voice! So, as a way of detoxing, from many of life's common practices, hubbs and I decided to go silent. We made a few rules about when we could talk, how we could communicate etc. and began living without words. We weren't going for monk-dom. We could read modern novels and watch movies. We could do some charades and a few written messages were ok. For the most part, though, silence. Here's how it went:

My first reaction was mild panic. I didn't know how this would go, what it would look like. I didn't know how to function without language. It was surprising, however, how fast my mind adjusted and within hours watching people in movies talking seemed strange.

My thoughts were so LOUD at first. Jibber jabber, jibber jabber, bla bla bla! Stupid stuff, commenting on everything! But, there was no one to share my inner narration with and so there was really only one choice, let it go.

When things happened, like the strainer came out of the dishwasher all rusty, there was no discussion. No discussion meant no big deal. If you can't hash something out, all you can do is accept and move on...no blame, no remorse, no hang up.

I could not say "thank you" and I realized that was both good and bad. Bad because I could not express gratitude easily. Good because I noticed a feeling that can come with "thank you" is one of "superior" and "submissive." There was none of either in the silent world--only doing what needed to be done as it needed to be done.

No adjectives meant I either needed to physically share my experience, like yummy food, so that we could each have the same experience of "good" or "yummy." When faced with the choice of sharing tasty food, I kept my adjectives to myself and ate the food without conveying how it tasted to hubbs. Selfish? I wouldn't have given him any if I could talk, so why should I just because I'm silent! :)

I was surprised to see that the dogs didn't notice at all. All the yammering I do to my dog all day and she did not notice that it had stopped. In fact, I felt much more in tune with our dogs as we communicated in silence. I felt that my Whippet actually became more expressive but perhaps I was just paying closer attention. I felt more like them than I ever had--I understood them better as silent companions.

I learned that most of the things about which I would normally engage in a discussion, I actually didn't care that much. My hubb wanted to make the room cooler and indicated so as he turned the AC dial. Normally, I would have something to say--a need to discuss. With no words, I realized I just didn't have a strong opinion either way. It made me see that often, words= ego. I may not care abut something but if given the option to ruminate, to discuss, ego will not pass that up!

When we started cooking dinner, I felt more like primitive man. Communication around tasks like cooking is so helpful! Communicating around abstract tasks is equally difficult and important. Things like, "I'm going to the Grocery Store. Do you want anything?" was impossible to communicate without words. It gave me a strange understanding/appreciation of the origin of language.

I noticed the capacity for language to help us QUALIFY EVERYTHING! As children we are asked by everyone around us "Do you like this? How do you like that?" and we are programed that way to attach descriptions and opinions to every little thing. I learned that not everything requires a qualification! Somethings just ARE. Words, modern language, asks us to analyze and find a conclusion for every experience, belief, taste etc. Perhaps that is just overdoing it! Perhaps not every nuance of life requires my (internal or external) description and conclusion.

Without words, you have to either BE your expression or DO your expression. Gratitude is a kiss, not a word. Wanting to be close to someone becomes a physical closeness, not pretty language from across the room or via email. When I wanted hubby to know I missed him, I waited on the front porch for him to come back from walking the dog. At some point, I got hot and bored and I would have liked to go inside. But if he came back home and I was not on the porch, how would he know I missed him? Words are gone and we become our action. Not a bad way to live, with or without the silence!

My mind got quieter and quieter as the silence went on. Things like colors and the blooms on trees caught my eye. I wasn't too busy running my mouth anymore to notice these things and I like it this way. I was able to get very clear in myself about a few things, personal and professional, that I have not been able to get my mind around. After 24 hours of silence, it seemed so obvious.

I like words. I like talking. I like sharing abstract thought. I also like what I found in the quiet. I will now seek to find a balance between the jibber-jabber of modern life and the sweet silence of this staycation.

Tonight, we are going out to dinner and have ourselves a nice talk...with as many comfortable silences as possible.

Introduction: Stuck or Un-Stuck?

Have you ever been stuck? Better yet, have you ever loved someone who was stuck? (It's much easier to see when other people do it!)

You know what that means, don't you? When life isn't going just right and you start spinning your wheels. When you just can't seem to find a detour around the obstacle. When life's fast-balls hit you in the face and you just can't seem to get back up again. When the supportive people around you start to take a few steps back, become inpatient and start saying things like, "Isn't it time to move on?"

When being stuck relates to the world of illness, you might find a label attached to your lack of mobility: "victim."

In 2007, my first book, "Sick Girl Speaks!" was released. Since then, I have had the pleasure of spending my time giving talks and workshops to patients and families about navigating the medical system. As a person with cystic fibrosis and having received two double lung transplants in my first 30 years of life, I had a lot to say about life in the medical maze. "Sick Girl Speaks!" is a series of complaints and love letters about the ups and downs of life "on the inside"--a battle memoir filled with tips on being an effective patient advocate. It was a book born out of years of difficulty and the joy of survival.

I'll admit, I wasn't terribly interested in the professional perspective when I wrote "Sick Girl Speaks!" What happens on the other side of the curtain has always seemed mysterious and beyond my grasp. Since then, however, I have been able to get a glimpse into the medical professional's perspective and I find it both humbling and fascinating. It's almost as if we are two different species--professionals and patients--and we find each other equally elusive and difficult to understand. I could never have predicted the enthusiasm and hunger I have found when I speak to students and health care providers about life in The Sick World. They really want to know what makes us tick (patients, that is) and I have discovered great value in learning more about the landscape of the world in which they reside.

What does that have to do with this book? Well, it is through my conversations with doctors, nurses, chaplains and social workers that I have come to discover a question worthy of us all pondering. I am often asked by those in healthcare how it is that I was able to avoid becoming a "victim." They see it over and over in their practice--the patient who faces illness with grace and purpose contrasted with the patient who never seems to find peace and lives life with resentment and anger. How does this happen? Why does this happen? How can one patient find joy despite suffering and another never recover from the trauma of a scary diagnosis?

I would be deceptive if I didn't mention that these questions often come wrapped in a fair amount of judgment and disapproval. After all, if Bobby can be positive, the fact that Jonny is negative means he has made a choice to remain a victim of circumstance, right? And dealing with Jonny and his "bad attitude" is much more difficult for everyone involved. Naturally, this could lead to resentment on the part of Jonny's loved ones and caregivers.

So, it appears this is a question that would be worth spending time thinking about. For Jonny himself, Jonny's family and for Jonny's healthcare providers. We all need to know, why is Jonny stuck and how can we help him get un-stuck?

I propose that we all have internal monologues that play in the theater of our mind. A movie reel containing a story that we might not even know is back there. It isn't until we understand what story it is that we keep telling ourselves that we can then begin to change the film and tell another tale.

What is Jonny's story? This is what I want to know. What is my story? Your story? Was does it mean to be a victim and how does that differ from "normal grief"? The illness story always begins with grieving so why do some most past the pain and others stay locked inside it? How do the stories of the people around us influence our internal monologue? What can medical professionals do to help us tweak our story, if anything? Does having a "bad attitude" have any impact on our physical outcomes? Can language help shape our story to one of empowerment?

These and many more questions flood my mind as I prepare to embark on this journey. And, unlike the creation of "Sick Girl Speaks!", I will not be on this journey alone. I will be using stories outside of my own to help me decipher these intricate questions.

This is not a book intended to place blame or create labels. On the contrary, this is a book intended to remove the fog from the mystery of living with illness. We can not be compassionate until we understand. It is not until we understand that we can make a different choice. Often, we can not make a different choice without believing there is another one to make.

There is a universal goal among patients, loved ones and professionals. We all want to live the best life we can, don't we? Likewise, we want to walk through this life with people who are also living the best life they can, right? In exploring these questions, perhaps we can get one step closer to living well with illness. Let there be healing through exploring illness and the stories we tell ourselves!

Uh-Oh. Pregnant Again!

Hi All!

Well, it's pretty obvious to me that I am not good at this whole "blogging my life" thing. So much has happened but I just never seem to have the motivation to sit down for a blog recap. This is precisely why I didn't write a memoir! I just don't like to recount my life...it doesn't appeal to me much. (I like reading memoirs, just not writing one.)

So a few little announcements before I tell you about my pregnancy! I was on NPR last weekend, "The People's Pharmacy," and it was lovely. I was very nervous and you can tell in the first few minutes but I eventually hit my stride and go. I have had a great response and am forever grateful to Joe and Terry Graedon for giving me the opportunity to be on national radio!! Now, I'm inspired to make up a cool media packet and shop it around--getting press really helps sell books! Who knew? :)

I will be posting an excerpt from my interview on my website so keep an eye (ear) out for that.

Also, in Sick Girl Speaks Inc. news, I am proud to say I am now officially a member of the Duke Healthcare Patient Advocacy Council! How great that Duke even has a council like that and how great it is that I get to sit on it!!! I feel so fortunate. Life is good.

Ok, speaking of life being good--let's get back to me being pregnant. Well, as you all know, I gave birth in October 2007 to a bouncing baby book by the name of "Sick Girl Speaks!" Like so many Moms, I have been fretting about making sure my child gets the attention it deserves and the love it needs to grow. I am still tired from giving birth and raising my little baby who is growing into a fine little toddler. Being a Mom is exhausting!

But, like so many Moms, I just discovered this morning that I'm pregnant again--and so soon after the birth of my last child! Oops! Oh well, hopefully there's enough of me to go around!! :)

I have a new book in my mind, my guts and my soul. It has been slowly emerging through all that I have been doing and learning these last few months but it just became fertilized after a conversation I had yesterday. (So, I suppose if I don't want to get pregnant again after this, I should abstain from conversations as that seems to be one of the major ways I get pregnant with book children!)

So "Sick Girl Speaks" is about the medical system primarily and navigating the medical and emotional mazes. This new baby is about the individual and family systems. It's already got a name: "Victimized: Illness and the Stories We Tell Ourselves."

This theme of Empowerment vs. Victimization or Healing vs Curing--these are big themes that keep popping up over and over. The stories we tell ourselves and the stories that we are told from others have a major impact on how we will cope with diagnosis, chronic illness, serious illness, death and grief. I will tell my story but I will also be telling a lot of other people's stories.

I see the format being very similar to that of "Sick Girl Speaks!" You know what that means, don't you? Yep. I'm back bloggers!!! I'm blogging a book again!!!! Yea! I am so excited!

I can't wait to get started. I'll also be looking for stories from you guys. Up for it?
My self-determined deadline is October 15, 2008. I'll give birth right around the same time as last year!!

Victimized: Illness and the Stories We Tell Ourselves....
Like it????

But, Don't You Know Who I Am?

Wow. What a crazy month! April flew by with barely time for a blogging "hello"! I have been to NYC, Wisconsin and all over North Carolina this month. I have been so happy to have great opportunities to speak at really exciting venues, begin my "Finding Your Voice" series for patients and families and I'm thrilled to say I was able to get certified in the "Respecting Choices" Advance Care Planning Facilitation and Instructor technique. I keep booking "gigs" and the book continues to gain momentum. Now, the key is finding balance! Isn't it always, though?

In between all of these things, I have attended quite a few CF fundraisers and similar events. One of those was this past Saturday night. Parents of a CF girl (Dad was quite the rock star in the 80's and 90's) threw an amazing concert a local hot spot with all of the money going to the Cystic Fibrosis Foundation. It was awesome--my kind of fundraiser!! Congratulations Amy and John for putting together such an amazing two nights of fun and raising tons of money for CF research!!

My story is more about the opening band, however. I had never heard them before but my friend who came with me had. They were almost done playing when she casually mentioned the lead singer's name.
"Did you say Chris Stevens?" I asked with my mouth agape.
"Yea" she said excited at the connection, "You knew his band the Delboys?"
"No!" I proclaimed beaming, "I know his dog Coco from the vet hospital where I used to work! Coco was my favorite!!"

So what, you ask? It was just one of those moments when I really understood the limits of our perceptions. I saw this man dozens of times and knew him as a middle-aged guy with a wife, kids and the cutest Powder Puff Chinese Crested I had ever seen. There was nothing there to ever give me the hint that he was a musician and a rock star of sorts.
I wondered if it was frustrating for him to go about his day and know that people had no idea about his hidden "coolness." Who knew he was hip?
I could almost feel my brain twist when I was trying to align my previous perceptions with the man I was watching rock it out on stage. We make so many assumptions--how often they are wrong!

I suffer from Misunderstood-itis. I really don't like it when people make quick assumptions about me based on how I look, my educational background or where I live. 99% of the time, I feel like their perceptions are wrong and yet, how often do I stop to check my own? Rarely.

From now on, instead of assuming that what stands before me represents a person in entirety, I will assume the opposite. After all, the guy with the with the dreadlocks could be an accountant. The guy with the mini-van could be a rock star. The girl with the 2.5 kids could be a CEO of a Fortune 500. The girl with the fancy business suit driving a Lexus might live at home with Mom and have a drinking problem!! The person who stands before me is only a sliver of who they are.

I, for one, would love it if people would assume that I am much more than they can see. I will now try to extend the same courtesy to those I meet.

Grandparents

Congratulations are in order! Jason and I are grandparents!

Yes, I am referring to those eggs and, yes, they did come from our little Cockatiel named Spike.

No, we don't have a male bird in the house so, no, those eggs won't hatch.

What's funny though, is that it takes a few things for a female to lay eggs--something Spike has never done before in the 5-6 years I've had her.
1. Spring
2. Longer, warmer days
3. A mate

Well, numbers 1 and 2 are obvious but who is her mate, you ask? Believe it or not, this winter, Jason and I put out a bowl of water next to her cage with one of those small motors in it that turns the water to mist. Our intention was to use this as our humidifier. Well, almost instantly Spike feel in love. Yes, that's what I mean--she fell in love with the bowl of mist.

Since that day, she has cuddled up on the side of the cage near the mist and cooed and called to this new gentleman love. When we turn the mist off, she gets irate and squawks until we turn "him" back on.

Yes, I think I can safely say, we have the first Cockatiel to mate with, and produce eggs for, a bowl of mist.

Cards and presents are not necessary! We do welcome gifts, however, when we have the egg shower.
(just kidding, of course)

Ain't life grand? And weird?

P.S. Sorry my posts have been so few and far between. April has proven to be such a busy time for public speaking. I'm loving it but barely have time for anything else. I should be back to blogging in May!

Powerful, Moving and Affirming

The Narcissist and The Saint

Here are our two babies--yes, this is another Awwww post.
What's funny is that the white one, Emily, is mean as spit and regularly bites and pushes B, the brown one, so he can't get to the food. Needless to say, he doesn't like her very much.
Doesn't she look so peaceful laying on her brothers hind end? For Emily, it's all about what makes her happy--she pays no attention to others. For B, it's all about being a good boy.
She's a narcissist and he is a saint.

Mathaphobic

This post is not related to illness--unless you count Mathaphobia as a sickness.

Here's my bold confession. Oh, boy. This is a tough one. Are you ready?

I, Tiffany Christensen, at age 34 and of sound mind and relatively sound body, do not know my multiplication tables.

Yes. You read that right. I don't know what 7 x 4 is. I have to use a calculator.

Last night, my hubs and I were talking about this sad and disturbing fact, of which he accurately likened to me not being able to read. We were able to trace it back to elementary school. My teacher had a technique for teaching multiplication which consisted of students coming in to see her one by one and being drilled on random multiplication equations.

What's 8 x 3?

What's 7 x 9

What's 12 x 3

You got 2 seconds or less to answer or else...I don't know what the "or else" was but I was terrified of it!

This is not a good way to teach me stuff. I have panic attacks when I watch "Jeopardy" with Alex Trebec! That kind of pressure makes my brain freeze...and when it come to my times tables my brain has never thawed out.

After that, I was the one my teachers always brought to the front of the room to do equations on the chalk board--oh, that really helped my anxiety, let me tell you! I imagine they thought they were giving me special attention but they were really just giving me a heart attack.

I have lived as a Mathaphobe my whole life. You might wonder why I don't learn my multiplication tables now--good question. Maybe it's time to conquer my Elementary School demons!

In the meantime, if you see me counting on my fingers, please don't make fun. Just hand me a calculator. Thank you.

Sacred Worrying

My best friend is currently in the middle of grieving one of the most confusing and painful kinds of loss a human can live through. For her sake, I won't go into more detail than that.

5 days had gone by since I talked to her. She wasn't returning my calls or, I suspect, getting anywhere near her email. The concern built to an intense worry.

Because of my inability to check in with her, everything I did during the day was done with a layer of anxiety boiling just beneath. As a good therapist should, my shrink and I set out to see if there was a way to curb my distress--after all, it wasn't helping anyone was it? Or was it?

As we began to dissect my feelings in an effort to "work through" them, it was pretty obvious that I was resistant to giving up my worry and replacing it with something more "productive." My shrink suggested Tonglen, one of my favorite meditations for healing others. Nah. He suggested doing some sort of ritual to send her peace. Nope. He tried to get me to look for ways to release my anxieties and replace them with "healthier" emotions. No thanks.

It was then I started describing my worry in more detail. My worry made me feel connected to my friend even during a time of not being in contact. My worry made me feel like I was holding some of her pain for her. My worry made me feel like we were in this together. I had no desire to give up my worry--"healthy" reaction or no.

It was then my wonderful therapist and I landed upon a new kind of conscious thinking--Sacred Worrying. Instead of trying to resolve my worry, we decided to embrace it. By becoming conscious of how it served me and what role it played in staying connected to my friend's tragedy, it lost it's neurotic quality and became sacred.

Every time I noticed myself worrying, I bathed in it, lit an candle in my mind and allowed myself to be there with my friend--even without direct contact. Sometimes, what we are naturally doing is just fine--it may just need a little fine tuning.

As a follow-up, my friend contacted me shortly after my session with my beloved shrink and I am going to see my friend this weekend. Sacred Worrying served me well last week and now I will relish my role as supporter and well...friend.

A Time for Listening

As I've said in the past, it can be difficult for people to take me seriously.
I'm short, very slight build, look to be about 18 and have no formal degrees.

In the past few years, I have been increasing the volume of my voice so I can be heard over the reasons why I am "not qualified" to speak. And it's working.

I am so grateful and amazed at the people who are listening and I gain confidence in my message as it grows and evolves.

Today, however, I realized I have been shouting for so long I have forgotten to shut up from time to time. The sound of my own voice is getting too much airtime in my own head. It is time to stop talking so much and listen--consciously listen.

I made a choice to do that a few times today and it was so refreshing. It was like cold water on burned skin.

My feet are in the door now. I can stop trying so hard to prove my voice has value. Now, I can begin to really explore this new world I have entered and listen to the stories, opinions and feelings of the people around me. I am truly am surrounded by the most amazing people! I am so fortunate.

I may have something to give, but I have so much more to learn. It's a time for listening.

Emotional Drive-By

Years ago, I listened to a talk given by Elizabeth Kubler Ross. In one part, she was telling a story about a car accident and one woman who, instead of concentrating on the inconvenience of the traffic jam she was sitting in, spent her time idling thinking about the people in the accident and praying they would be ok. This story had an impact on me and I try to do this whenever I see an accident--I concentrate on sending the people peace, comfort and healing.

Today, however, was different. On my ride to work this morning, there were several cars on the side of the busy road I travel. It looked like an accident involving 3-4 cars. No one looked critically injured but they were shaken. At the time I saw the accident, I was deeply immersed in my morning driving ritual--"Fergalicious" was cranked up and I was pumping myself up for the day with some car dancing and singing at the top of my lungs (thanks to my donor!)

Here's the brutal truth--I just didn't feel like being compassionate this morning. I didn't want to turn down my radio and quit car dancing. I didn't want to alter my happy mood with thoughts of sending out peace and healing. I didn't want to take time out of my current state of being to honor the people struggling by the side of the road. So I didn't. And it felt weird but I kept singing and dancing anyway.

After the light turned green and the accident was far in the distance, my feelings of strangeness dissipated and I was once again fully immersed in my Fergie CD and my morning ritual.

This made me think of a section of "The Power of Two" where Isa is describing a time when she was fighting for her life, barely able to draw the next breath and the nurses in her doorway were talking about a television show.

I imagine what I felt today on my drive to work is similar to how medical professionals must feel sometimes--they know they should be providing emotional as well as physical support but they just don't want to. They'd rather car dance instead.

I now have a new term for this: this is called an emotional drive-by.

I understand it. I just don't want to make a habit of it.

Another Top 10 List!

What can I say, I can't get enough Top 10 Lists! Here's another one I wrote for a few talks I gave last week. BTW, I had a crazy week--I made 7 presentations last week! That was awesome and I'm so happy my schedule is filling up...BUT, that's way too many presentations in one week! I have decided to limit myself to 3-4 presentations a week. I am still exhausted and it's Sunday!

Please note that there is some new video on my website that contains some of Friday's talk where I (very quickly) present this Top 10 List.

Tiffany's Top 10 Tips and Tricks for
Navigating the Medical Maze

1. Knowledge, Awareness and Boundaries are the first three keys to effective patient advocacy. Gone are the days of relaxing and letting the doctor call all the shots— Be a humble, polite, persistent Squeaky Wheel!

2. Here’s the greatest irony of illness: when you are at your worst is exactly the time when you need to be at your best! If you aren’t up for self-advocacy, bring some one who can do it for you.

3. Being sick is difficult. Be kind to yourself and find ways to process your emotional needs while catering to your physical needs. Healing can happen no matter what the physical outcome.

4. There is power in the Written Word. Use signs whenever you can. Always take notes when getting medical instruction. Keep a list of your medications so you don’t have to repeat yourself.

5. Know the medical hierarchy! If you have a problem with a caregiver, it pays to know where to find their boss!

6. Seek out other patients who have traveled a similar road, they may help you avoid potholes.

7. When you seek out other patients who have traveled similar roads—be careful who you listen to—they may be a pothole.

8. If you go to a surgeon, they will want to do surgery. If you go to a medical doctor, they will want to give you medicine. If you go to an acupuncturist, they will want to give you acupuncture. What do you want to do?

9. Always ask direct questions. Never assume that your doctors are telling you “the whole truth and nothing but the truth” unless you have looked them in the eye and specifically asked what you want to know.

10. Illness is difficult but, if you look hard enough, you might find it also offers opportunities for growth, gratitude and joy.

Transforming Objectives

When I was diagnosed at 6 months old with cystic fibrosis, my parents were told I would only live to be about eight. Through the mourning, their objective became to give me the greatest quality of life possible.

At about 6, medical treatments for CF had advanced and the life expectancy was increasing. I had also become a horrible brat because my mother had decided "quality of life" was equivalent to "never being told no." When they began to see I might live beyond the initial predicted eight years, they began to reign me in and the objective became to give me the most normal life possible.

At age 12, my lung infections were no longer responding to oral antibiotics and I needed to go in for "tune ups" with IV antibiotics in the hospital. This made keeping up with school more difficult so the objective became to manage my illness while staying focused on finishing high school and going on to college.

When I was 21, I was in my fourth year of college at an acting conservatory. Long story short, I still had two more years to go before completion but my health had deteriorated and I had to drop out. It was at this point they chose to put me on the lung transplant list. At this time, the objective to finish college remained and putting off lung transplant indefinitely was at the top of my priorities.

At 22, I re-entered college. It was a small school near in my home town. The objective was to get a degree, any degree, just finish college.

Only half way through the semester it became obvious that I could not keep up with my classes. For the second time, I dropped out of college. The objective became to focus on staying healthy and avoiding the need for lung transplant. I moved out to the Bay Area and sought the magic that would stabilize or cure my illness.

At 24, I was very sick and had to move back to my East Coast home. I was at the top of the lung transplant list and sick enough that I began to accept the possibility of having the surgery. The objective became to maintain as much quality of life as possible while I waited.

At 26, I got my new set of donor lungs and I was off and running. The objective then became to figure out where my place was in this world and make something of myself.

At 28, I hadn't figured out how I wanted to make my impact on this world. I was floundering. 2 years and 2 months after my transplant, I was diagnosed with chronic rejection. The objective then became to power through the illness (aka denial) and figure out my life anyway.

At 30, I could barely function. I celebrated my birthday on the couch of my parent's house, unable to even get my own drink from the kitchen. At this point, the objective had become to have a rich inner life and say all the things I needed to say before I died.

Later that year, I decided to talk to my transplant team about the possibility of a second transplant. After their initial response of "no" they later came back and offered to put me on the list again. The objective at this point became to become equally content with the possibility of re-transplant or death. There was another objective in play here and that was to simply survive for the possibility of transplant.

My story will end here for now. I never made it to the next stage but I have seen it in my friends and hospice patients who have passed away. After the objective to simply survive comes the objective to just be comfortable. After the objective to just be comfortable, when people are "done", the objective becomes to die.

I am writing this today because the transformations in our objectives is a big part of illness. You might begin by hoping for a cure and end by hoping for less suffering. In my case, I have hoped for everything from normalcy to mere survival. Now, my objective is to live a huge life while I can.

I have gotten a few emails and seen on some message boards sentiments from parents with young CF children talking about this objective curve. They want to be educated and read the books and have the conversations but they are simultaneously horrified and deeply saddened by reading the stories of people like me who are much further down that path of illness. As an example, for me, transplant is the greatest gift--for them, it is their greatest fear.

I recently told a CF mom that I didn't think she should read my book yet. (Yes, I am a terrible marketing director, I know!) She said my story made her cry and I just thought my book would be too much to bear. I saw another CF mom post on a listserve that she had read "The Power of Two" and she cried herself to sleep. That book inspired me and made me feel so happy...this mom saw in it a bleak future for her child, punctuated with the end result of organ transplant.

I don't know if it was the right thing to tell the mom who inquired about my book, that she shouldn't read it yet. I've never been in those shoes. I don't know if the mom who read "Power of Two" will someday be happy she did. I just know there is a fine line between knowledge and Too Much Information. I know there was a time when the word "transplant" made me nauseous. I don't think I needed to face that possibility until it was time to face that possibility!

Did I need to think about transplant when I was 6, 12, 19? I don't think so. Then, again, perhaps I would have lived my life differently, better somehow, if I knew that was on the horizon. Maybe I would have taken better care of myself or appreciated my lung function more. Then again, maybe I would have put myself in a bubble an lived out of a fear of my future.

There isn't really a need to face the hard, scary stuff until you have reached that bend in the road. Or is there? I'd love your opinions!

Mr. 23% Statistic

Today I was poking around on the United Network for Organ Sharing (UNOS) website--for those who don't know, this is the organization which houses the transplant lists and organizes organ allocation. That really isn't a great explanation but it's alls I gots right now...

In addition to The Lists, UNOS also has tons of data on the site. The data I was most interested in was the stuff about survival rates and transplant centers. It was very interesting and informative.

I stumbled upon some statistics about lung re-transplantation. The data shows that the survival rates for re-transplant are significantly lower than for first transplant.

Apparently, at 5 years post re-transplant, about 23% of the patients are still alive. I have to admit, when I saw that number, I drew a breath. 23% seems so much lower than the 50% survival after 5 years with a first set of donor lungs.

I am coming up to my 4 year anniversary with this set of lungs. After saying goodbye to my dear Double Double Sister, Susy, and seeing this number...well, I'd be lying if I said it didn't give me pause.

Here's the thing, though. After I had some time to process it, I realized...Yea, I realized I'm weird.

During the time after transplant (tx) #1 I had this nagging worry that I would fail to be one of the "cool kids" and live a long life post-tx. I wanted to be good enough, worthy, impressive--all of those things--like the many other people around me who had lived 5, 10, 15 years post-tx. I doubted my ability to be in that club.

Here I am, now, looking down the barrel of a strikingly dismal statistic and that worry to measure up is gone. I am no longer feeling the need to prove myself worthy of the 50% survival rate. I am feeling the need to prove that statistic wrong, for me. I am feeling competitive with that statistic. Screw that 23% bullshit--that's not how I'm going down.

That's part of who I am--I really like to have my back up against that wall. How strange that I feel more comfortable, no...empowered, now that I know I'm fighting the odds on a much steeper incline than I was before.

As I said, I am weird.

Do I think that this attitude will prevent me from succumbing to this statistic or another one down the road? No. Of course not. If Susy taught me anything it's that desire alone can not keep a person alive when the body is beyond repair.

Do I prefer this feeling of competitiveness and fire to the feelings of fear and unworthiness? Of course I do.

Will it help me live longer? Who knows. Will it help me live better? Oh, yes.

I'm glad I read that statistic today. I challenge you Mr. 23% Statistic--I will surpass your expectations.

At the same time, I challenge myself to live like there's only 23% chance that I will be here next year and do it all while I can.

I challenge you to find your motivating statistic and live your life bigger and better too.

23 is my new favorite number.

The Flu: Not Very Fun...Strange.

Holy Cow! How long has it been since my last confession? Er, I mean blog? It seems like forever.

That flu isn't really fun...isn't that surprising? I got my flu shot like a good girl but apparently it only helps with one of the three strains going around. (I don't know if that's a fact, it's just what I've heard.) What I do know for sure is that I haven't had the flu since I was a young girl and it was a wonderful reminder of childhood! :)

For Valentine's Day, I gave my Sweetie the generous gift of my germs--awww! Isn't that romantic? He was down for a week with the flu and we are now arguing about who was sicker. (Remember that chapter in the book called "Competitive Suffering"? Yea, we went there big time.)

Anyhoo--I'm mostly back in the land of the living. I've got a stupid cough and I'm buried under a pile of unanswered emails but hey, I'll get back on track eventually.

Here's the good thing about the flu: it gave my some inspiration for blog entries! More to come on that front.

Thanks for all the well-wishes and I hope you are all steering clear of that not-so-fun flu!!

Hello? Is there anybody out there?

It's been so long since I posted I imagine everyone has left this blog playground never to return again!

I'm sorry!

I still want to play Blog but I got the flu!

If I bring a note from my Mommy will you excuse my blogging absences?

Lost Opportunities

Hello Friends...

Well, the grieving for my friend has taken a weird shape. It's not like the grieving I am used to. Instead of loud and overwhelming, it is quiet and slow. It hits me in small doses and usually brings a tear to my eye but not down my cheek. Today, finally, the dam was broken and I actually cried.

During the last few weeks of Susy's life, I created a private blog for her friends and family. It turned out to be a great way for people to learn about the latest developments in Susy's life and her sad death. It also became a place of community. People who know and love Susy can leave comments and many of them have written me directly with thoughts, feelings and introductions.

It is not a new idea for me that death brings us a gift of a 360 degree view. Through all of the emails from people in her life, most of which I don't know, I learn more about Susy every day. Truthfully I think I have learned more about her in this last week than I would have if she had lived 5 more years and we continued being friends. There's just a different perspective that comes with learning about someone you know through other people--a 360 degree view. A part of my finds this sad and another part just finds it fascinating.

Be it sad or not, I have been overwhelmed (in a good way) by the number of emails in my inbox. People who I never would have known, from all over the country, have become my friends. This makes me happy but it also makes me yearn for Susy.

I want to call her up and tell her about her friend in Georgia who wrote me. As I learn more about her life, I want to ask her more about her life. I didn't know she graduated college with all of those honors. I didn't know she had sooo many people in her life who had CF and transplants. How did she get to know all of those people? She had done more and knew more than I ever realized.

I knew aspects of Susy but not the full picture. As the view becomes more clear and well-rounded, all I want to do is pull up a chair and talk to her about all the things I now know. I had more things to learn from her than I realized. If only I could go back and ask all the right questions and listen, listen, listen.

Tonight, I am still mourning (in my own weird, slow way) the loss of a bright light. Susy was many things to many people and I am just discovering how far reaching her impact really is.

Tonight, I am mourning lost opportunities. There is so much I'd like to talk with her about but my chance is gone. She left before I even knew what to ask.

I have made a note to myself: Ask more questions. Try to get a more well-rounded view of everyone close to me while they are still here to answer the questions I want to know.

XXOO
~Tiff

A Sad Goodbye

Picture above is Susy and Tiffany at the Sweet Melissa Fundraiser in November, 2007


Hi Friends,

My new plan for 2008 was to post multiple times over the weekend and let myself off of the mental hook during the week.

My life is getting busier and busier by the day. It's all very exciting but I just don't have the time for posting Mon-Fri. But that's not the point of today's post.

The point is that I am taking this weekend off from pretty much everything (including blogging) to mourn a dear friend who passed away yesterday.

Susy was my "double double sister." She and I had our second transplant a month a part. We shared a similar medical history and an even more similar sarcastic sense of humor. More often than not, we pointed our sarcastic tongues in the direction of all the stupid medical crap we had/have to go through. We laughed through even the crappiest of it and, underneath, I had a deep sense of satisfaction knowing how much we were not alone as long as we had each other.

Susy left her body yesterday after dealing with stupid chronic rejection for about a year. I am so honored to have been to see her the night before she died. I am so thankful for all the time I was able to spend with her and her family during this last month.

Susy taught me a lot about that line between fight and surrender. I'll admit, sometimes I thought she was crazy (and she knew it) because she just never slowed down. Instead of quitting work and becoming a permanent fixture on the couch, she not only continued working but also entered graduate school! She worked and went to school through the end of last year. She didn't stop until the semester ended--and she got all A's.

Susy has opened my eyes to a new way to live with end stage illness. I'm sure someday, I will take what she has taught me and apply it to my own end stage illness.

Susy was a smart, passionate, funny, beautiful, compassionate person who reached out to so many people in profound ways. She has so many friends that it was impossible for me to keep track of them all. She was a special one.

To my double double sister, my other pea in the pod, my sarcasm twin...my friend. I miss you. My only solace is that you are no longer struggling for breath. My greatest comfort is knowing you have now found peace.

I love you, Suze.

Defining My Role

Well, I had a most exciting day this week--I did an interview with Joe and Terry Graedon who have the popular NPR show "The People's Pharmacy."

I can't really tell you how I did. I know I was nervous and I know there were things I thought of later that I wish I had said. I doubt, however, there will ever be an interview in which I say everything perfectly.

There were many wonderful things about the interview--the top of the list had to be meeting Joe and Terry. They are so kind and such pros!

Second on the list, though, was that talking about my book and my work in that way allowed me to diver deeper into the specifics of what my mission really is. Sure, I didn't say it on air, but I'll say it now! :)

I am an optimistic realist. My goal is to look at things (this system, my role as a patient etc.) as honestly as possible and then find strategies to make it better. I am not a politician: I have no desire to change the laws or get involved in system changes. Likewise, I am not a Pollyanna: I have no desire to sugar-coat things and tell everyone it all will be ok.

What I do have a desire is to take my experience and turn into practical "how-to" advice for patients and families. I desire to learn more about "the other side of the curtain" so I can bridge the gap between patient and professional.

I continue to define my role more and more everyday.
I thank Joe and Terry Graedon for an opportunity to do it through talking with them!!

I'll let you know when I find out the air date for my interview!

The Permanent Me

I had two years left before I graduated from the acting conservatory but I just couldn’t deny it anymore—I was struggling. My lung infections had become so frequent and difficult to control that I was getting weeks of IV antibiotics every month. I was rarely not doing home IVs. Despite the treatments, I pushed myself and rarely missed a class. As a drama student, I had dance class, improv class and stage combat training in addition to traditional acting classes. Me and the IV in my arm went flying all over the studio, hoping to somehow keep going on the road to my Hollywood dreams. But, after two years at college, my dreams came to a screeching halt. I could no longer deny the fact that the program was killing me. I did not return for my third year of school. I was a drop out.

Leaving school behind was intensely painful. It wasn’t me that wanted to quit, it was this stupid body, these stupid lungs, that kept me from finishing what I had started. What I didn’t know at the time was that walking away from college was only the beginning of a long list of things I would never finish. My CF just kept getting in the way of my big (and little) plans. I had to mourn the loss of my future.

After I left school, I was placed on the lung transplant list. The allocation system was different back then and I knew I had a long wait in front of me. For awhile, I tried to continue on, business as usual. I auditioned for, and got, a part in a community theater play. Everything was going fine until I had a horrible coughing attack in the middle of a performance—the kind that comes from the bottom of your toes and there’s no holding it back. This was embarrassing for me and traumatic for my cast mates and the audience members. This was the last play I was in.

From there, I tried to move into directing but my declining health proved an obstacle once again. The stress and physical exertion it took out of me was too much. By the time the show was up and running, I was in the hospital with a raging lung infection and I never got to see the play I had worked so hard to pull together.

Little by little, all of who I thought I was got stripped away. Who was I if I wasn’t an actor or a director? What was the purpose of my life if I could no longer do the things that gave my life meaning?

And it didn’t stop with my career. As I became sicker, more and more of the things that defined me began to fall away. I got a job as a part-time receptionist but, despite my employer’s enthusiasm for my work, I quit after only a few months. The constant IVs and lung infections made even part-time work too difficult. About the time I went on oxygen full time I stopped dating, traveling, driving and living on my own. My independence had been lost. The world became a place filled with obstacles—even stairs became a threat to my well-being. There was very little left of who I had been.

That was when it happened. After the crying was done and I had mourned my losses, a new part of me began to open up. This was a part of me I had never known before—an inner world I never knew existed. I had met a new best friend, a person who made me laugh and always knew the perfect thing to say. The amazing part was: that best friend was me.

In time, I explored an inner landscape filled with new ideas and a raw honesty. I stopped needing to tell people about who I used to be and what I used to do. Those things no longer felt like an important definition for my life. Instead, I invited people to look past the oxygen tubing and the labored breathing and see the truth of who I was. Through my losses, I had made a brilliant discovery—The Permanent Me.

The Permanent Me did not need labels or job descriptions to know she was valuable. Nor did I need my health to enjoy living. Armed with my new best friend at my side (me) I felt more alive than ever before.

I don’t mean to suggest that I did not have days of pain or difficulty. Waiting for a transplant, after all, has many challenges. But even on my worst days, there was a part of me that was never scared, never sick and never tired. I had connected with the “me” who was fulfilled even if the day's major activity consisted of getting from the couch to the bedroom. I loved myself for merely existing.

Now that I have had two transplants and am enjoying the greatest health of my life, I struggle to remember what it was like to live without society’s labels. I am back in the world, working and trying to find “value” in the time I have on this earth. The idea of losing my independence and giving up all I have made my life to be strikes fear in my heart. I don’t want to say goodbye to everything. I like my labels!

Yet, when the day comes that I have to begin stripping away all of who I have become, I will take solace in knowing that The Permanent Me is waiting, ready to be my best friend again. The Permanent Me has taught me the greatest lesson of all: I am not illness. Even when my body is broken, I am beautiful and irreplaceable. I have nothing to prove—I am perfect just as I am.

My wish for all of those who must suffer the losses that come with illness is that they too will discover The Permanent Me inside.

Manicured Worry

With me being a fancy-dancy public speaker now, I decided to treat myself to a little non-essential beauty enhancement. I am a hand person. I notice women when they have pretty hands and nails. For this reason, I got myself acrylics! I love them!

They are not, however, painless. During the time that the nail tech is grinding them down and smoothing them out, there is some pain involved.

A few days ago, I got my first "fill in". This is when the natural nail starts to grow out (I am going somewhere with this, hang in there) and they reapply some of the acrylic solution. There is more grinding and smoothing done at this time.

When the tech was working on the pinky nail of my left hand, the pain was noticeably worse. It burned and hurt enough that it was hard for me to sit still. I wanted to ask the nail tech about it--I had all kinds of questions starting with "Is it normal for it to hurt so much on one nail and not the others?" I didn't ask, though. I just had the feeling that would be a dumb question and one he couldn't answer anyway.

It made me think of all of the times I have wanted to ask my doctor or transplant coordinator a "stupid"* question. By stupid, I mean a strange question that had no answer. Things like "Is it normal for my rib to move like that" or "When I breathe like this, what does it mean?" These are not things that anyone would know off of the top of their head. The only thing my docs could do to answer these kinds of questions would be to run a bunch of expensive tests. The chance of the tests being able to answer the questions is about 0%.

What I realized while I squirmed in my chair as my nail was burning, was that there is always a question behind the question. The question that popped out, had I chosen not to bite my tongue, might have been "Is it normal..." but what I really wanted to know was if the burning was an indication of a nail bed fungus or infection. (This is something that can happen when you get acrylics.) What was driving the question was my mother's voice--she had made me paranoid about getting a fungus since I am immune-suppressed.

I thought of all the "stupid" questions I had thought about asking my medical team. 100% of the questions were rooted in worry. About 85% of them were rooted in a worry directly correlating to some story or half-fact I have heard along the way.

Here's my point:
As a patient, when you find yourself obsessing over a twinge or a tingle, ask yourself what it is that you think it might be. What is the worry and where does the worry come from. From there, it will be much easier to decide how legitimate or silly it would be to page your doctor for a worry consult.

As a medical professional, try to remember that off-the-wall symptom questions have a worry behind them. You may not know what the symptom means but if you ask your patient what they are concerned about, you will likely be able to tell them what that particular ailment would look like or feel like if they had it. By addressing the worry, you have addressed the root of the question.

I, for one, can not call my transplant team for every bodily warning bell that goes off. For most of the bells, I have to wait it out. Otherwise, I'd be on the phone with them at least once a week! It helps me to become conscious about what is at the back of my mind because it's likely that far away thought that causes my anxiety. Most of the time, when I realize what I am actually worried about, I have a good chuckle and happily go about my day. Every once in awhile, I call my team.

Who knew getting a manicure could be so informative?



*Yes, I know there is no such thing as a stupid question. Well, maybe not to some people but I sure have heard some!

Your Daily Dose of Cute

I am not one of those mothers who thinks that everyone in the world finds their child as adorable as they do. In fact, I know people (Ahem, Dad) who don't even think my daughter is cute at all! "Weirdest looking dog I've ever seen" I believe was the exact quote.

Oh, well. It's my blog and I'm gonna bore you with my daughter's cuteness anyway!

Here's our little bundle of Whippet joy this morning keeping herself warm on this chilly winter day! Everybody humor me now and say "Awwwwwwwww!!!"

Book Launch Party!!!!

It's a Book Launch Party for Sick Girl Speaks!

Thank you to Project Compassion for Throwing this Fabulous Book Bash!!

Thank you to Moshi Moshi Hair Salon in Chapel Hill, NC for Donating the Space for this Event!

• Meet the author, Tiffany Christensen
• Get a book signed
• Enjoy an author reading
• Bid on carefully selected silent auction items
• Snack on yummy sweets and coffee drinks

A portion of the book sales will go to Project Compassion

In Addition, Bid on Spectacular Auction Items that

Benefit Project Compassion and Celebrate the Sweet Things in Life!

Here is a taste of the yummy auction items:

UNC Basketball Tickets

Amazing Beach Trips

Clyde Jones "Angel" Statue

Beautiful Hand Made Necklace by a Local Artist, Kathy Hartman

Stunning Prayer Flag Art by Pat Kosdan

A Reflexology Session at CommonHealth in Carrboro

A Divine Moshi Moshi Facial

Keep checking in with the website to see additions to the list of auction items!

Where? Moshi Moshi Hair Salon at 416 West Franklin Street, Chapel Hill

When? February 17, 2008

3:00 doors open: Meet the author and get a book signed throughout event!

3:15, 4:00 and 4:45: Book readings

4:50: Silent auction winners are announced

5:00: Say Goodbye and Check Out for Silent Auction Items

Why? Food, Friends and Charity, of course!

During January and February, a portion of all paperback purchased off of the Sick Girl Speaks! website goes to Project Compassion

Get more details on the website: www.sickgirlspeaks.com

Broadway! I ain't coming...

About 15 years ago, I struggled through some mandatory dance classes at North Carolina School of the Arts. I didn't know it at the time, but I was only a few years away from having my first double lung transplant. I coughed, wheezed and panted my way through these dance classes, taking many breaks and fighting for air. I was in survival mode and the last thing I cared about was whether or not I "got" the dance moves or not. I was just holding on for dear life and trying to make it through the excruciating exercises.

Since then, I have often fantasized about taking dance classes post-transplant. Now that I can breathe, it seemed like it would be fun and easy!

Last night, I took my first dance class since NCSA. Well, I was right--it was fun. I was also wrong--my lungs had little to do with my dancing ability! I am horrible!!! :) :)

I am double jointed so I look freakish doing some of the "jazz hands" types of things. I am very uncoordinated so I spend most of my time trying to figure out which foot is supposed to have weight on it. During the combination, I franticly look around for help and am 1 beat behind or ahead the routine. I bet you're thinking "That doesn't sound like fun!"

But it was.

The instructor is very sweet and the folks in the class were very generous with their support.

Best of all, I only got winded one or two times. The rest of the 1.5 hour class, I was concentrating on my two left feet. I still may be a terrible dancer--Broadway will never see me headed their way--but there's one big difference...I can breathe.

There are no words to express how beautiful it is to compare yesterday to 15 years ago. Not thinking about breathing is a dream come true.

Now, let's hope my donor had some ability for dance--maybe she can help me out with the "Cats" combination!! :)

"Something to Live For" follow-up

Thank you to Clay's family for your heartfelt notes of appreciation for my "Something to Live For" post.

In my "magical fantasy," my day of living for Clay would have been a day of great joy and enjoyment of life. However, as it turned out, Monday was one of the hardest days I've had in a long time. I was uninspired at work, my after-work plans seemed to fall through and I spent 3 long hours after dinner writhing in pain from some strange stomach problem.

Even still, I held Clay close to my heart and mind all day. Instead of living a big day for Clay, it turns out I had a hard day and Clay's memory gave me great perspective. Instead of me doing something for him, he did something for me. I had not planned it that way--I wanted to drink in the glory of living and dedicate my intoxication to him. Instead, he reminded me that every day is precious--even the ones filled with disappointments and pain.

I had set out to do a nice thing in honor of a boy who had left this world so quickly. As it turns out, the honor was all mine.

Thank you, Clay.

Something to Live For

I talk a lot on this blog about living each day to the fullest and about remaining conscious of how precious every day is. Often, I get my motivation to live well from thinking about my donors. Some days, I get it from missing friends who have passed. Often, I get it from the excitement that comes from my new business endeavors. Once in a while, I can't quite find the inspiration to suck the marrow out of the new day.

Tonight, I got a sweet email from a mom who lost her precious 5 year old boy to CF just last month. She was encouraging me make my dreams come true! Can you believe the generosity some people have in their hearts?

Monday, January 7th, I will live to the fullest in honor of Clay. Our disease took him so soon and the least I can do is remember how lucky I am as often as humanly possible.

I have so many things to live for. My life is so beautiful. Now, I have one more thing to live for--Clay, this one is for you. Happy Monday, everyone.

Live 'em while you got 'em!

Giving Back in 2008

Hi Everybody!

I wanted to announce a new program I have developed for 2008.

Every two months, I will be picking an important cause--one I personally believe in. During the two months this non-profit or charity is the focus, for any paperback book you buy, that worthy cause will be getting a portion of the proceeds.

Now, you have one more reason to buy Sick Girl Speaks!

January and February's focus is on a very special non-profit: Project Compassion!
Check out the details on my website: www.sickgirlspeaks.com

Health and Happiness to you in 2008!!
XXOO
~Tiff