The Year of Potential into The Year of Action!

2007 is nearly at an end!

When I reflect on the overall feeling I have for this past year, I have no major overwhelming impression. In most ways, this year has been a year of profound potential for me--writing a book (recently published), creating new talks and workshops, quitting my "day job" to book speaking engagements and workshops for 2008...basically laying the ground work for my bigger and better life ahead!

All the while, working to stay conscious of the impermanence of my place here--trying to enjoy the good stuff without too much attachment to the length of the road ahead. I lost some good friends in 2007--this helps me remember to remember the realities of life as a transplant patient. I miss them and thank them for this lesson...

All in all, 2008 holds a lot of promise and some big risks for me! I walk into tomorrow with great excitement and a few butterflies--gone are The Days of Potential and into The Year of Action!

2008, Here we come!!
I wish you all love, health and dreams come true in the coming year!
Blogging Friends, thanks for helping to make The Year of Potential so exciting for me!! :)

XXXOOO
~Tiff

The Paradox of Illness Beliefs

Illness is often a web of contradictions.
It can be both terrifying and hopeful. Both profoundly difficult and intensely beautiful. Sad and sweet.

Perhaps the greatest contradiction of all revolves around the issue of power and control. I am what they call a "lurker" on a few CF and transplant listserves. This means, I watch conversations people have about their feelings, questions and problems in dealing with illness. One theme seems to weave itself through most issues: how do I take control of this situation?

I think it is human nature to feel as though our triumphs are direct testimony to our actions. Conversely, many people feel our tragedies are forced upon us, despite our best efforts. I see this often with illness.

Some people might decide exercise is the key to holding illness at bay. Others might attribute health to eating well. Some, believe in the power of prayer. For all of these things, there is a sense of control--a belief that if you do something correctly, you will live longer and healthier than those who don't. When those around you fall ill, it is easy to excuse this by saying they did not do all of the things you are doing and this is why they are now sick. For this belief, there must be a winner and a loser.

For parts of my life, I relied on magical thinking to help me feel in control. If I prayed right, meditated properly etc, I held the key to my own health. I am often swayed by the exercise people who tell me I will get sick quick if I don't start running marathons and stuff. If I had a nickel for every time I beat myself up about my lack of exercise...

But then, I see the people who do it all right and they still get sick. The compliant ones who never miss a dose of medication and do it at the same time each day. The ones who exercise their butts off. The ones who monitor everything closely and make health priority one, every day. They still get chronic rejection. They still get lung infections. No matter how hard they fight to stop the barreling train, illness still takes over. So, do we really have any control? Are these ideas about how to stay well mostly a coping mechanism to give us a false sense of control in a random situation? I don't really know the answer right now--there's too many sick people around me to see straight.

Would you rather hold the belief that you have power over illness through some action and risk great disorientation and disillusion when illness creeps in anyway OR would you rather hold the belief that you are powerless over illness and embrace this lack of control, only focusing on today? Perhaps, like everything, it is the search for a balance between these two that is most important...

I Love Nurses!

I gave a talk to The Nurse Leader's Association yesterday. This was my first time addressing nurses and I had been waiting to do so for a long time.

As usual, I wrote out my talk but wasn't happy with it. I always feel like it could be cleaner, more exciting...whatever. I've gotten used to that feeling!

In the 30 seconds I was being announced, I jotted down a few things that came to my mind. Namely, nurses throughout the years who have had a major impact on my life and my illness.

Between the prednisone (it makes it harder for me to actually cry) and the fact I've done a bunch of these types of talks, I don't know that I've ever cried during a presentation. Well, yesterday I did.

When I got to the part where I had jotted down a few notes about past nurses, I got so choked up. It all flooded back to me--my heroes. My saviors. My advocates.

Sure, I've had plenty of crappy, mean or irresponsible nurses. I don't need to tell those stories. We all know what those nurses are like. But, let me tell you about a few nurses who I will forever love...

When I was young and had CF lungs, I had a nurse named Steve. Steve had been working with CFers for decades (I don't know that he was that old--I'm just saying he had tons of experience!). There comes a time in every young CFer's life when they have to decide if they are going to get a port-a-cath-placed. I, as are many like me, was terrified of having this permanent IV access in my body. It seemed gross and painful and I had heard horror stories of infection and other complications. It was Steve who sat with me and told me about other patients with CF (no names, people) (besides, this was pre-HIPPA bullshit anyway) and how getting a port had worked out for them. In the end, the conclusion was that, yes, some people have problems but most people wish they had gotten one sooner! Thanks to Steve, I got a port, felt good about it, and it was one of the best choices I've ever made.

I have tons of stories like this...here is just a small sampling:

The nurse who walked me through my g-tube options when the stupid doctor wanted to leave me with a huge, unnecessary tube hanging out of my belly. (he said I could use a cumberbund to keep it in place--what year is this?)

The nurse who yelled at me and told me I needed to advocate for myself and gave me tips on how to do it. At that point, she was preaching to the choir but THANK GOD there are nurses out there doing that.

The nurse who held my hand and wiped my tears every time I came into get a PICC line. She sincerely cared (or appeared to) about how hard it was for me. Unlike the doctors, she had oodles of compassion (or appeared to).

The young nurses on the surgery step down units used to come into my room when they had some time and talk about life and boys. They liked me, I guess. What meant so much to me is that they saw me as a peer and a person, even with the millions of tubes sticking out of my body.

And then, of course, the grand nurse of them all--my beloved Becky. The one who saw through my anger and decided she wanted to find a way to get me a second transplant. The woman who saved my life. I can never say "thank you" enough to my beloved Becky.

Nurses are the backbone of our medical system. My care is usually as good as the one standing in front of me. They are like teachers in that they are underpaid, overworked and utterly invaluable. Nurses are on the frontlines and, when I have not been able to advocate for myself, it has usually been a nurse who steps in to do it. I love you, nurses. Thank you for all that you do. Please know that, when you are kind and courageous, your patients never forget you. Even if you never see your patient again, please know that they think of you and thank you in their heart.

Here is my Top Ten List of Why I Love Nurses!!!

1. A good nurse knows more than the doctor about pretty much everything.

2. A good nurse doesn't let it show on her/his face how grossed out she/he is by cleaning up your vomit, poo, pee, blood etc. etc...

3. A good nurse can do her/his job with the lights off and without making any noise.

4. A good nurse knows the buck stops with her/him.

5. A good nurse cares about the patient more than the rules.

6. A good nurse makes you feel like you've just made a new friend.

7. A good nurse can talk about all the embarrassing stuff (like frequency of bowel movements and if you’ve “filled the hat”) without making you feel self conscious.

8. A good nurse becomes your advocate when you are too sick or tired to stand up for yourself.

9. A good nurse understands that illness affects a patient emotionally as well as physically.

10. A good nurse will save you unnecessary pain and could potentially save your life.

Crazy Emily

After my second transplant, I decided I wanted to fulfill one of my life's dreams--to be a mommy. To a dog, that is. I am a proud dog Mom to one white Whippet. I also have a wonderful step-dog named Buddy.

When I was searching for my new dog/baby, I wanted one that would be very sweet and laid back. From my research, I decided a Whippet would likely fit my lifestyle and my temperament preferences. (I really wanted to avoid high energy dogs--I'm too lazy for that!)

I found Emily at a local Whippet Rescue and took her home. Rather than go into details on how she differs from the above description, I'll let this video speaks for itself!



Before anyone gets upset and writes me that we abuse our dog--please be assured that Emmy loves to play like this! She is usually the initiator!

I hope you find this as funny as we do around our house!!

Brain Dead Before New Year's

This is the longest I've gone in between blogs! Ack!
I just feel brain dead, I'm sorry.

I've been fighting some silly cold which makes me sleepy which makes me groggy which makes me fuzzy which makes me feel too stupid to blog!!

Here's what I've been thinking about:
the abstract nature of illness and dying.

I signed up for a grant next year--yay!!!! But when it was time to talk about the particulars--what the year would look like--I felt GULP! A year? Can I commit to a year? Is that okay?

Most of the time, I go through life with a distance from death. Knowing it's coming but happy to think about it when it comes a'knockin' again...not now, thanks.
But, here I am talking about a year into the future! Yeesh. That seems like forever in transplant years. Then I get paranoid. If I think like this am I inviting another illness?

I still feel, even after all I've done in 2007, like I am standing on the edge of my life. Ready to jump off and fly but waiting for someone to stop me and say "Are you kidding? You can't do that! You're dying again..didn't you know?"

Okay. This must be why I haven't written in awhile. A lot going on inside that I haven't processed yet.

The new year has always been a big catalyst for me to think about where I am and where I'm going. It seems the new year thoughts have come before Christmas this year.

I love you guys.
Thanks for all your blogging kindness.

I sincerely wish you all the best in 2008.
Happiness and health.

Confessions of a Shopaholic Relapse

I suppose it's quite understandable. In a life where so much is out of my control, I found comfort in an addiction--shopping! It began at age 6 when I broke my leg learning how to ski. I was in terrible pain and my father brought me a stuffed egg guy from the hospital gift shop. The stuffed animal soothed me and was the first object in a long journey of self-medication with material things.

In the early years, toys and, later, clothes were things I turned to when I was sick and sad. They brightened my day and provided a much-needed distraction from the realities of my illness. My dependency grew and eventually, I was shopping for all emotional occasions--I shopped to celebrate, soothe anxiety, comfort sadness and remedy boredom. There was nothing in life that didn't warrant a shopping trip!

In the times I was seriously ill and immobile, my physical limitations helped to temper my shopping desires. There was only so long I could shop before I was too exhausted to continue. In the very sick days, my Mom wheeled me through the mall in a wheelchair as I piled clothes on my lap. (She was also a inexperienced driver who banged me into many poles and clothing racks! We laughed so hard!) Shopping wasn't something I did by myself, it was a bonding time for me and my mom or friends. There were so many advantages!!

Things got really out of control when my health was no longer a limiting factor. After both transplants, armed with new lungs and a prednisone high, my love of shopping consumed me. After transplant #2 it only took a few months until my credit card was maxed out at a whopping $10,000. Gulp. That is when I realized this wasn't a joke anymore. Shopaholic was a funny word I tossed around but, looking at the damage I was doing to my life, it began to ring very true. I took it seriously and decided I needed help.

I went to my therapist and we hashed out a plan. First thing was to call the credit card company and work out a payment plan that I could actually do. Second, was to get myself into a 12 step program (for real). Third, and simultaneously, was to process my need to shop and find its roots so I could spray some weed killer on them and be done with it.

Luckily for me, my credit card company worked with me and I got a payment plan that I could handle. I went into Debtor's Anonymous. I began to explore the depths of this addiction and found out it was deeper than I ever expected.

Debtor's Anonymous was quite an experience! I had never done a 12 step before but certainly knew about them from TV, movies etc. Just like in AA, you begin each meeting with the "check-in." We all sat in a circle and went around the room and, when it got to be your turn, you were supposed to say "My name is so-and-so and I am an over spender, under earner." You then give a very brief explanation of how well, or not well, you have done with spending since the last meeting. Just to make sure it was brief, we were always being timed. It felt like Pictionary, I was always hurrying because I didn't want to get caught by the buzzer. It was so nerve wracking for me and I found it very restrictive and annoying. (The most we ever got to talk was one minute.)

I was a rebel in the group because I refused to say I was an "over spender, under earner." That makes me sound like a victim. If I just earned more, this wouldn't be a problem? No. So, I said "My name is Tiffany and I self-medicate with material objects." Some people in the circle admired my new saying and others gave me dirty looks for going outside of tradition. The dirty lookers were mostly the people who had been going to these meetings for 900 years.

There were some really good tips that I learned from this group. I learned about "book-ending." This is where, when you have to go shopping for something, you call someone first, tell them where you are going, what you are there to buy and how much you can spend. After the purchase, or lack of purchase, you then call the person back and tell them what you did. Did you spend more than you said? Did buy something other than what you set out to buy? Did you go to another store? Did you not buy anything at all? This sets up accountability and really worked for me.

The other tip was the 24 hour rule. One day, I book-ended with my mother and told her I needed running shoes for work. When I went to the store, I was overwhelmed by at least 3 other pairs of shoes that "I had to have." I honored the 24 hour rule because these were not the shoes I went in to get. I called my Mom and told her that I was going to go back the next day and decide which of the 3 pairs I would get. The next day, I went back and guess what? All of those shoes were soooo ugly!! I couldn't believe how excited about them I had been the day before. At that moment, I really understood that my perception was blinded by the chemical reaction I had when I was in Shopaholic Mode. I began to understand that it really is an addiction.

Besides those 2 things, I found Debtor's Anonymous to be ridiculous. Everyone was so victimized by themselves. One guy had a thing about not opening his mail. To him, if he didn't open his mail, the bills didn't exist. Talk about classic denial! Every week he came in and said the same thing--"I planned on opening my mail this week but I didn't. I'll open it next week, bla bla bla." This had been going on for months, maybe even years. The group's response was "Thank you so-and-so!" Why are you coming to this group if nothing ever changes? Is it helping you or only serving to "normalize" your denial so you don't have to be brave and move past it? There were many people in the group with similar patterns.

The breaking point for me was this woman I will call Sally. One night, during one debtor's 1-timed-minute story, Sally got up and left the group and didn't come back for the rest of the night. No big deal, we all figured she had a meeting or a date or something. The next week, during "check-in" Sally revealed that when she had left, she had actually driven to a local hotel and bought thousands of dollars worth of art. How did she pay? With a bad check. This was her "thing." What was the group's response? "Thank you, Sally!" Are you kidding me? This woman leaves in the middle of a meeting, a place where she is supposed to find help and support, to go indulge in her addiction and all we say is "thank you"? No way dude! I don't think we should have shot her or anything but how about simply asking, "Sally, why didn't you say something at the time you were having those feelings so we could help you through them?" It became clear to me that this group was not effective and it actually helped people stay stuck in their addictions. That was the last night I attended.

So, for a few months, I tried to get off of my "drugs" and it was hard. The reason I say it is truly an addiction is because, during this time of cold-turkey, difficult emotions were popping up left and right. Feelings I had glossed over with a new sweater came up to bite me in the butt. I sat outside of stores talking to myself, only to drive off and speed away from my temptations. I was jonesing for a fix. I went into a hardware store to get a key made and you would have thought I had landed in the middle of Saks Fifth Avenue! My hands danced across the shiny tools and my eyes twinkled as they scanned the room filled with things like thermoses, plants and keychains. I got that familiar high and was shaky. I wanted to buy, buy, buy. Instead, I left the store without getting my key made and knew I had a long way to go.

Eventually, the emotions stabilized and I no longer want to buy stuff at the hardware store. I can shop like a normal person and, in fact, I am so picky now I often have trouble finding anything I want! I am very proud that I have kicked the habit!

Like any other addiction, however, a person can have a relapse. I had one this week. I was cranky and agitated again (see post about PMS) and I could barely stand to be in my own skin. My solution was to go shopping. Unfortunately, it helped because I bought way more than I could afford. I know I'm in trouble when I get light-headed and I make impulse buys. I bought a pair of $60 earrings that I don't even like that much! I bought a $40 hair bobble that I can't return! I bought a cute black dress, though. Score on that one.

So now begins the part that is all too familiar. 1. Take back the stupid earrings. 2. Shuffle my finances so I can afford what I bought. 3. Center myself again in That Which Is Important 4. Start book-ending again until I get myself under control

Like a smoker who has one cigarette after 5 years of not smoking, now that I've started, I feel hooked again. All I want to do is shop more. Christmas is around the corner and it will be a challenge to keep my shopping impulses under control as I look for gifts for other people. Unlike drugs or drinking, shopping is a part of life you can't just cut out completely. This makes it uniquely challenging.

My name is Tiffany and I self-medicate with material objects!

Wish me luck this holiday season!

Thankful

I hope everyone had a yummy and peaceful Thanksgiving.

Our dinner was awesome and I have much to be thankful for!

I have a wonderful family and friends. That includes my silly dogs and mean bird.

I love my new "job" and I continue to get more speaking engagements/workshops--yea!

I am so thankful for both of my donors and their families. It's 2007 and I am still here--how amazing!! It's all because of them and my transplant team.

I am also very thankful I have struck up a cyber-friendship with Ana and Isa Stenzel. They are two amazing women with an outstanding and inspiring book. I don't know who's book I want you to read more--mine or theirs!! :) Check out "The Power of Two" on Amazon.

And last, but not least, I am thankful for my little blogging community. You guys are the best!

I wish you nothing but the best.
Happy Holidays!

Post-Thanksgiving Ramblings

A few weeks ago I went in for a routine visit at my transplant clinic. Sitting in on my appointment was a doctor from another hospital who was being represented as the "Nissen Expert".

For those of you who don't know, a Nissen Fundoplication is a stomach surgery done to prevent any stomach acid from coming into the esophagus. This is a laproscopic procedure that is often done for people with debilitating acid reflux. In my case, and the case of many other lung transplant patients, this procedure is being performed as a possible way to stop stomach acid from going into the lungs and, thereby, hopefully reducing the chances of getting chronic rejection. Some docs swear by it and some docs think it's a gimmick--the opinions range on if it has been proven effective for delaying or preventing chronic rejection.

I was hesitant to get this procedure done, partly because it was experimental and partly because I already had a crummy stomach to begin with. As it turns out, my instincts were right, unfortunately, and I have many regrets about getting this surgery. I have many more stomach problems, some of them really impacting my daily life.

OK. Now back to the "Nissen Expert" sitting in on my clinic visit. I told the docs about my various complaints and we talked about how my symptoms were not getting much better, even now that I was 7 months post surgery.

The Nissen Expert chimed in and told me that what I was experiencing was better than possibly getting chronic rejection. Period. End. Statement.

Here is where doctors can miss the mark. No. That is not a statement of fact. In truth, it should have been a question, ie. "Does the fact that this might prevent chronic rejection outweigh the problems you are having?" I would have welcomed and appreciated this question but, instead, I tossed and turned that night (and other following nights) reliving that moment and getting more irritated the more I thought it over. I wish I had given him a much longer answer than my curt "no." The answer is a complicated one, and not the point of this post.

The point is, quality of life is a huge factor many professionals seem to discard. As long as the stats look good, as long as I can move around, as long as I don't die...it seems that this is all that they feel the need to consider. The reality is, there are many things I would rather die from instead of undergo the treatment. To live for the sake of living may not be worth it if the rest of the days are spent in pain or battling side-effects of the meds or procedures.

Don't get me wrong. I don't want chronic rejection. I've been there and it's no fun. That is the reason I ultimately chose to move forward--in the name of doing everything I could to preserve these lungs. That said, my side-effects really cramp my style.

Is it worth it if this procedure really does delay or prevent chronic rejection?
Absolutely.
Is it worth it if this was an experimental surgery that turns out to not really make a difference in the onset of chronic rejection?
No way.

I think doctors need to understand that the nuances of living with illness are more subtle than they, as presumably healthy people, can understand. To the "Nissen Expert" I say; it may or may not be worth it--the jury is still out. Next time, please ask me the question instead of telling me how I should feel about my own sufferings.

As I write this, I feel what a tight line I am walking. On one hand, I am a patient who has benefited from some of the most extensive modern treatments known to man. On the other hand, I am a person who has faced death and understands that there are worse things.

I don't want to come across as ungrateful. I do want to assert my rights as a person, a person who is more than a patient.

In many ways, it feels as though I owe my team my life. Shouldn't I do whatever they want--they've gotten me this far? At the same time, I didn't live through transplant to suffer with unnecessary problems!

It's all a delicate balance. One I struggle with whenever things like this arise.

I guess the bottom line is what I always come back to: I have to educate and advocate for myself. Simultaneously, I will continue to ask docs to consider my perspective more closely before making assumptions or characterizations.

Is that fair?

An Evening of Miracles!

This past weekend, my mother, myself and my two sisters loaded our stuff and ourselves into the car and drove down to Columbia, South Carolina. We were traveling 3.5 hours to participate in "An Evening of Miracles"--a CF Fundraiser that was being put together by a childhood buddy/CF Sister and her husband. I was excited mostly to see Jen but was also anticipating selling some books. I had been asked to read a passage from Sick Girl Speaks! and this seemed like a great crowd to receive my message.

Upon arrival, I was astounded to see Jen. She looks great! She will hate me for saying this, but you would never know she has CF. At 36, she was running circles around me and my borrowed, healthy lungs! She is a testimony to how hard work and diligence around therapies and medications can increase a person's quality of life.

Because she was running the show, we didn't get much time for one on one. When we did, however, I was taken aback by the similar roads we have traveled in our lifetimes of dealing with CF, life philosophies and relationships. We knew each other only as children and hadn't seen each other in over 20 years. Despite this fact, I felt as though I could tell her everything and she would understand. When she spoke to me, I felt I could spend months listening and responding. This connection was only one of the many miracles I discovered at "An Evening of Miracles"!

**To see some pics of Jen and I, please visit the "Photos" page of my website!
www.sickgirlspeaks.com

There were two other families at the event that touched me deeply. One was a man (I did not get the honor of meeting his wife) who had lost his son in February. His son had CF, had a double lung transplant, later a kidney transplant and was waiting on a donor liver! Amazing. I hope this is okay to say, but something about this man reminded me of my beloved grandfather. I felt an immediate warmness towards him for this reason and because of the similar paths we have traveled. He was sponsoring this night in honor of his son and it was often difficult for him, actually impossible, to hold back the tears. Even still, one of my most favorite parts of the night was when I asked him to dance with me! We went out on the dance floor and CUT A RUG! It was so much fun!! This was a moment I will never forget--two strangers connected by difficulty and loss finding a way to celebrate and feel joy. Yet another miracle.

The second family was a wonderful couple who have a 7 year old daughter with CF. You'd never know it--she looks so healthy! This family started "An Evening of Miracles" 4 years ago. They were overwhelmed by the response and that this event had grown so large--400 people attended this year! I had the opportunity to speak with the mother and father of this family. I knew that there was worry inside them--worry for the future of their daughter. I wanted so badly to be able to take that worry away! I know in my heart, it will be okay. No matter what happens, it will be okay. Look at all they have accomplished for this cause--this event alone raised nearly $100,000 for CF Research! Now that too is a miracle--what one family can do!

The CF world is not one I travel in much these days. It was almost a feeling of "getting back to my roots." I was touched and moved by the advancements that have been made in just my lifetime. There is so much more hope for those born with CF today than there was only 30 years ago. I was proud to be a part of such a meaningful fundraiser. I was so impressed by Jen and her husband, Pete, and all of the committee members who made this night a raging success.

I may not have sold many books, but that's okay. Instead, I met up with an old friend who I hope will now be a new friend, bonded with my sweet Mom and sisters, met a man who touched my heart and flung me around the dance floor and hugged a woman who's girl has CF and, partly because of her parents, will live a longer and healthier life than I ever imagined at that age. I went to see Jen and sell some books. I got so much more. I got An Evening of Miracles.

Check out the Evening of Miracles website.
If you would like to make a donation to help with CF Research, visit the CF Foundation website to find out how.

Car Psychology

For years, I have held the philosophy that life in a car is a microcosm of society. The way people behave behind the wheel seems to reflect the way they live their life.

There are those drivers that maneuver aggressively and take every opportunity to drive as fast as possible--even in between traffic lights. I always theorized that these people craved power and hoped others would see them as powerful, thus driving in this overpowering style.

There are those that drive well below the speed limit and look at you like you are a raving lunatic when you pass them. I theorize that this type of person is afraid of life and does not trust their own abilities but justifies their conservative style by accusing every one else of being irresponsible crazies. (This diagnosis does not apply to older people or people with physical issues that require them to exercise more caution.)

Then there are those drivers who push their way to the front of the line in a traffic jam, put on make-up while they drive or fail to even glance to the side when the turn into traffic or merge onto the highway. I imagine these people to be quite self-absorbed in their lives, moving through with little regard for the feelings or needs of others. They expect those around them to bend or move aside to accommodate their presence.

These are all, of course, gross generalizations based on pure fantasy and assumption! Nonetheless, I believe there to be a grain of truth in this philosophy and, at the very least, it makes driving more interesting for me!!

I am certainly not a perfect driver. In fact, I have been known to get angry behind the wheel and to be unforgiving of the drivers around me. Yesterday, I found myself muttering "jack-***" under my breath at two different drivers at two different times. Road rage is something that I acquired during my time living in the Bay Area. Every once in awhile, it comes back with a vengence.

My first road rage episode this morning, happened at a major intersection near my house. I was taking a left and there was a woman in a huge Cadilac who was way over the white line and therefore causing everyone to slow down. It was a bit of a mess, a very small mess, but enough for me to accuse her of being a jack-***. When I looked at her I thought she looked oddly unconcerned with the problems she was causing and this made me feel more irritated. She should at least have the "I'm sorry" look on her face accompanied by the palms up hand gesture/shrug that indicates it was not intentional! This is standard protocol for traffic boo-boos.

After I was past the jam, I was reminded of all the times I had been in a similar situation. When you pass the line, for whatever reason, and there is another car or string of cars close behind, there's really nothing you can do but run the light or wait it out. In those times when I sat waiting for my release, I didn't have the "I'm sorry" face. I probably had the "Get over it" face. I was reminded in that moment of the many lessons in compassion I had attempted to integrate within myself during my years of illness. When I am able to remind myself that I have been that person, who is now my object of irritation, it is so easy to drop the feelings of frustration. By realizing my own resume of driving errors, I was embarrassed that I had allowed myself to get so pissy about the Cadillac crossing the white line. Those who live in glass houses, right?

Well, my compassion didn't last he whole day. Apparently, it wears off with time because, hours later on my drive home, I was right back in full road rage mode. Come to think of it, I was at the exact same intersection but this time I was turning right. So close to home! There was a green Honda in front of me and a green light in front of her. Instead of moving forward to make the light, this driver slowed and almost stopped many feet before the intersection. I had to slam on my brakes to avoid hitting her--her reaction to a green light was quite unexpected. Once again, my face flushed and I called out a name. What the heck was she doing??

At a snail's pace, she took a right at the light and I followed her up the hill to my neighborhood. To my surprise, she turned onto my street. This is another aspect to road rage: it's easy to rant and rave to the anonymous driver behind the wheel but an entirely different story when the driver who steps out of the car happens to be a neighbor, a client or a friend!

At one point, I was released from following her timid pace because I went right and she continued forward. Rounding the hill to my house, I saw a girl standing on the curb. She was checking her watch, looking off to the horizon. It occurred to me that the woman in the green Honda was probably going to pick her up. The woman in the green Honda was lost.

Once again, I found myself drenched in road rage regret. How many times in my life have I been lost--in a car or just in my life in general? Many. And , at those times, what did I wish for the most? Patience and understanding from those around me. We all get lost, we all need space to find our way sometimes. My impatient face in the rear view mirror would only cause the driver more panic and slow her down even more. Counterproductive for all--very non-compassionate on my part!

There was a time, many years ago, when I was transporting a large dog who had recently passed away. I was taking her to the crematorium about an hour away. There were two things going on along that journey. The first being that the smell was beginning to be difficult to tolerate. The second being that I wanted to be respectful of this sweet dog's remains and so I was taking turns and curves at a very slow and gradual speed. Because of these things, I was driving very strangely that day--going as fast as I could, when I could, but also driving very cautiously when needed. I imagine my weird driving was the source of frustration for some people on that day.

I often think of that journey when I think about being compassionate. You never know who had a dead dog in the back of their car! Give people the benefit of the doubt that the way they are driving or the way they are living has a reason beyond your ability to see or understand.

The difficulty for me is remembering these lessons when I, once again, find myself behind a slow-poke or when my bumper is being ridden by a speed-demon. Driving might be representative of how we live our lives, I don't know. What I do know is that it is a perfect practice field for finding compassion for anonymous, sometimes frustrating, humans.

Updates and Stuff

Well, things continue to move along!
I am focusing a lot of my energy right now on getting some publicity for my little book. I'm self-published, so it's me or nobody!!

I had a radio and newspaper interview this past week. So strange! I thought I would be so cool with it but I got really nervous and felt so much pressure! I had to say something really interesting--I was being quoted or taped!! Well, I'll find out just how goofy I sounded tomorrow--the radio interview will air in the morning. I'll link the podcast so you too can hear my goofy answers.

Otherwise, I'm plugging along trying to convince people to crack the spine of Sick Girl Speaks! So far, once people start reading it the response is great--the trouble is convincing them to take it for a spin around the block.

Wanna try an experiment? There is a radio show here called "The State of Things." The basic idea is to have guests from North Carolina tell their story. I have a story to tell, right? Well, I have sent them my book and no response. I have emailed them and no response. A woman I know has emailed them and no response. What do you think would happen if my blogging buddies emailed them too? Would it make me look like a star or a real annoying jerk?

Email campaigns are all the rage! I'd like to see what happens. Here's the email address for the show: sot@wunc.org
If you feel so inclined, shoot them an email and tell them how utterly fascinating I am! :) Maybe it will get me on the show. Maybe I'll be blackballed. Either way, we'll know!

Also, check out my website--I'm on an uploading frenzy and have put up a new video, a few podcasts and will be putting up more podcasts this week.

Hope you are all having a lazy Sunday, just like me and my Whippet!! :)

Reminder: I'm Not That Special

Have any of you, my dear blogging buddies, heard about the Boston Molasses Disaster? In 1919, a massive tank of molasses collapsed releasing over 2 million gallons of the gooey stuff. It ran down the streets of Boston at 35 miles per hour. About 150 people were hurt, many animals were injured and 21 people were killed!

My husband was telling me this story last night and I sat in amazement. It makes me think about all the crazy, unexpected ways a person can leave this earth.

In many ways, I like to think I have an advantage. Because of my history, I have an acute awareness that it could be "any moment." Thanks to this, I live my life differently. When my day comes, I want to be proud of my choices and my willingness to take emotional risks.

In my life, I have often looked into the eyes of the person I'm speaking with and seen a well of pity. It's very uncomfortable! I have trouble staying focused on what I'm saying because I am so distracted by their deep feelings of grief and sympathy.

When I hear stories like the one about the Boston Molasses Tragedy, I am reminded that I don't have an advantage nor do I deserve any pity--the playing field is actually quite even. Any day, I could be walking down the road and be swept away by a river of North Carolina BBQ Sauce or, as the popular saying goes, simply get hit by a bus. The same goes for you!

There are times when I am frustrated by patients who constantly ask over and over "WHY ME?" I think this story is at the root of my frustration.

It is much easier to say "why not me?" when diagnosed with a serious illness--it certainly is a big club. At the very least, it is easier to comprehend that it would be for someone who dies from a river of sweet dessert food. We all have to go somehow. Someday. Let's not be so bold as to call ourselves special because we have an illness. Getting run over by molasses? Now, that's special.

Pet memorial

We had the community pet memorial service this past Sunday.
Is it wrong that I had fun?
It was just so wonderful to gather with fellow animal lovers and tell stories and cry about the ones we've loved and lost.
It was such a sweet day.
I'm so glad we did it and hope we can do it again.

I have uploaded my part of the service to my website: click here
Be warned, it's a little weird, I'm still trying to figure out my editing software...

Here's a link to the article about it: Chapel Hill News

Don't you just love your pets??
Don't you think all sick people should have a pet of some sort? Even if it's just a goldfish? (No offense to the "just" goldfish...)

Have a great Tuesday!

Goodbye Again

I was messing around with my cell phone yesterday and started editing my contacts list.

My friend Debbie was still in there even though she died about a month ago. I scroll past her name daily but, until yesterday, I couldn't stomach the thought of hitting "delete."

This is the second friend this year I have deleted from my contacts list. It's such a small detail but yet so profound. The permanency gives me great pause.

Somehow, hitting "delete" makes Debbie's death more real to me than attending her memorial service.

I guess grief is like that--it's often the little things that awaken the most sadness.

So today, my phone no longer contains her name and I say "goodbye again" to my dear friend Debbie.

Inappropriate Familiarity?

So, thanks to a very nice and very dedicated social worker who I knew back when I was 12, I had a meeting with the head of the CF department at Duke Medical Center last week. Hopefully, I will be able to work with them in some way soon but that isn't the point of this post!

When I was leaving the room, saying my "thank you"s and "we'll be in touch"s, the last thing I proclaimed as I left the room was "Thanks, Guys!" They gave me funny look and I went on my way.

When I got to the parking deck, I thought back on that moment. That was inappropriate familiarity, wasn't it? They are DOCTORS and possible future employers--should I refrain from being so casual?

I know where it comes from. I have spent so much of my adult life feeling less-than because I don't have a degree, certainly don't have a PhD, and processing all of what that means in this society. During my last terminal illness, I came to understand my value and that it has nothing to do with a degree.

When I went back into "The Well World" the feelings of inferiority came rushing back--I was immersing my self in a world of high degrees; doctors, nurses, social workers, psychiatrists etc... Over time, I have gotten to know many of these people that I had once intimidated me and I no longer think they are superior. I think I am just as smart as them, usually less trained, but no less intelligent. So, now I am unsure of my boundaries.

If I see you as vastly "better" than me I will be awkward and shy. If I see you as equal to me, I will be casual and more relaxed. I suppose I need to find the middle ground between "I'm not worthy" and "See ya later, dudes!"

It's a weird world out there and, in many ways, I'm still feeling my way through the basics.

MIA

I feel like I haven't blogged in ages! I'm sorry I've been MIA. And when I say "A" I mean it! This week has been so busy and it's not over yet!

I've got a few things on my mind this morning.
I've been thinking about mystery and fact: two words that keep the balance in romantic love and medicine. (Yes, I have a strange mind.)
Without mystery, love would be dull and uninspiring. Without fact, like the fact that your partner really cares, love would be far too scary to pursue.
Without fact, medicine would be nothing but a bunch of guesses and speculations; hardly worth undergoing the pokes and prods. Without mystery, there would never be the moment when a patient overcomes an illness despite all of the predictions of the doctors.
Fact gives us comfort and mystery gives us inspiration to keep going.
Two great opposites that go great together!

Another thing I am thinking of this morning is the word "survivor." I was reading that on a few patient blogs--not quotes from the actual patients but from those in "The Well World." I really don't like that term. (Have I talked about this before?) To call someone who has survived an airplane crash a survivor that makes sense to me; that's just a fact. To call me, a patient, a survivor makes me sound like I had something to do with it. For many of us who are in "The Sick World," we have seen people who did everything right die despite all of their "compliance" and effort. Likewise, we have seen people who do only the minimum of self-care live long and healthy lives. My grandmother smoked from the time she was 13 until she was in her 90's. Was she a lung cancer survivor? I don't think so--I think she was lucky!
Like my grandmother was, I think I am lucky. There are plenty of people who would have liked another transplant, or even a first, but didn't get one. There are people who excercised more regularly and ate a better diet who got cancer after transplant and died.
When I hear the word "survivor" I think of the TV show. I am not the winner of a million dollars, nor did I do anything better than anyone else to secure my position here on this earth. To call me a survivor is to call me a winner. That makes my friends who have passed the losers. No, I will not accept that! Call me lucky, called me grateful but don't call me a survivor!

Finally, the thing on my mind this morning is an event I am helping organize and will be speaking at this weekend. We are having a community pet memorial service. I think it is going to be a very touching and healing gathering for those of us who have lost and miss our beloved animals. My job is to create the program and write my talk. I will need to give it much more thought but I will post my talk once it is written--probably tomorrow.

Just a friendly reminder that Sick Girl Speaks! is available and there is a discount for patients and professionals. Email me if you're interested. tiffany@sickgirlspeaks.com

Have a great Friday!

Crazy, Sexy Questions

Well, I finally had the opportunity to watch "Crazy, Sexy Cancer."
It left me with some Crazy, Sexy Questions.

Let me start by saying that Kris Carr is clearly a talented artist. Her movie flowed well, was never boring and was pretty to look at.

Kris was diagnosed with an incurable cancer and had 20-something tumors on her liver and lungs. It looked bad. There is no treatment, chemo etc, so she embarks on a journey to find health with diet and yoga. I found the explorations into more "out there" therapies to be funny and something I could relate to. During the course of the movie, she interacts with several "cancer chicks" who are at some stage of treatment--serious chemo and all the effects. (Those people were my favorite part of the movie.) In the end, we discover that Kris' tumors are so slow moving that the doctor suggests that she refer to them as tumors instead of cancer. She never had one day of sickness during the movie's 4 year span.

Here's my question: Am I alone in feeling that a person with an illness which has no symptoms can't really lump themselves into the same bucket as those of us with serious, active illness and treatments?

I found myself getting angry at Carr for being around women who were truly physically suffering and not acknowledging that her level of illness was very different.
I felt angry at her for talking about her diet and crying about her diet and acting as though she was "being positive" in the face of cancer.
I do not deny the psychological effects of a diagnosis like that. I know there is the need for grieving and feeling your fear.
Why though, did I find myself feeling sorry for the sick people watching her movie?
Because I know some people were watching her walk down the aisle in a wedding dress and their hearts were breaking. They would not get to have another moment like that in their life.

I have written about "Competitive Suffering" and I am aware that is what I am doing.
I need to find out, though, what it is that has triggered my feelings of anger towards this woman.

Kriss Carr was on Oprah talking about facing death. My dream is to be on Oprah one day, so I know that I am just plain jealous. However, how does one really talk about facing death without ever spending one day sick in bed?

Am I just being petty?

Amazon

I have 3 very nice reviews on Amazon.com. I noticed that the more reviews I get, the higher I am on the search list.

If you've read Sick Girl Speaks! please review me!

I'm also looking for some one to read my book who has already read "Sick Girl." I want them to post a comparison on her Amazon reviews. I'll send a free book to the person willing to do that!

From Diagnosis to Acceptance (continued)

So far I have talked about some of my personal stages of acceptance--yes, I'm not going to call them stages of grief because they are all key players ending with the result of acceptance.

Here's the steps I've covered in the previous blog entry:
Numbness
Panic
Forced Calm (denial-ish)
Anger, Sadness, Bargaining
Opening up to the "safe person"
Confessing and revealing

After months of grieving, saying goodbye to my life and goodbye to those I loved, I moved into the next phase that I call the Daily Grind. This is where I established a routine. I built strategies around how to maximize the convenience of my living space. I had my painting projects to keep my creative juices flowing. I had internal projects on how to become a better person. TV was a source of entertainment and stimulation and, with the help of TIVO, I had a plan of what to watch and when. Life with my illness never became easy but it did become more normal. I had entered the Daily Grind.

As I spent more and more time alone, more and more time unable to do much physically, I began to live a life of "quiet contemplation." (Isn't that a phrase from Thoreau's "Walden"?) As my outer body weakened, my inner body strengthened and I was beginning to feel a deep connection with myself as well as The Divine. I began to feel connected to the Universe in a way I had never experienced before.

This feeling of connection grew deeper and deeper over time. At some point, I had a series of revelations.
1- It was my body that was sick, not my spirit.
2- I had a choice if I wanted to suffer emotionally as well as physically.
3- We all die, why did I think I was so special that I should somehow be exempt?
4- When I left this earth, I would be going home, not leaving it.
5- I had faced what many would consider is the worst case scenario: there was nothing I couldn't process and come to terms with.

These revelations were accompanied by feelings of happiness and often laughter--like my seriousness had been so serious I deserved to be teased a little. These thoughts and feelings gave way to my next step: understanding.

It was like I was seeing the world through a grid. When I saw a problem or heard a friend tell a story of frustration, I could almost see the way that the events in question fit with together and made perfect sense. It was like I could say "Well, if A and B are true than it's only to be expected that Y would happen just as it did!" The universe appeared to me to be a perfect place of balance. I felt so much like an integral part. This where I began to concentrate on That Which Is Important. I attribute this kind of understanding to being so close to the other side--it was as though I had one foot on earth and one foot standing in whatever was awaiting (heaven, the spirit realm, whatever you choose to call it.)

Okay, this is getting way too drawn out so I am going to lump my last three steps together: Peace, Gratitude and Joy. I don't mean to say I never had bad days; please remember what I wrote about all of these phases cycling around. For the most part, however, once I had come to terms with my fate and connected with the universe, I was at peace. Once you've faced the worst, what is there to be in distress about? (I am speaking emotionally, not physically.)
I felt gratitude for the love around me and for the time I spent every day getting to know my true self as well as The Divine. This is what I called being a monastery monk: I was grateful for the privilege to live a life of connection and contemplation, something few people get to do.
I felt joy. Plain and simple.

As I have written about before, that period in my life was a vibrant time and one I think on fondly.
I am so happy I am here, but I know some of the journey that is ahead for the next time I must face my end. It's an intensely difficult road with the potential for amazing and unexpected rewards.


Not everyone who passes away reaches the same place of acceptance I have described. I have two hopes:
1- I hope that many more people will discover the possibility of joy at the end of life, either through me or some one else, and our society's approach to death will change over time.
2- I hope that, no matter how some one felt at the moment of death, that it doesn't matter one stinky bit. I hope that we all feel great peace and joy once we leave the confines of this body.

From Diagnosis to Acceptance

I have two presentations to prepare for Monday and Tuesday. I'm excited to have 2 days to talk with Chaplain Residents (each talk is 1.5 hours) about the patient perspective.

The first talk is called "From Diagnosis to Acceptance; One Patient's Emotional and Spiritual Journey." This is the first talk I've done in which I will be able to address the spiritual element. That should be fun.

I have been thinking about my diagnosis of chronic rejection. I have attempted to trace my reaction time line. Certainly Kubler-Ross got it right, but I have many more "stages" to add onto hers.

For those of you who have gotten the news that you have a serious or terminal illness, I'd be very interested to know if my time line is similar to yours. Like Kubler Ross's five stages, the following stages could cycle back around and did not manifest as a linear process. I have, however, attempted to arrange them in a way that most closely matches the order in which I experienced them.

I got the news that I had chronic rejection, a diagnosis that was commonly terminal, after months of tests and guesses about what might be going on with my lungs. The day the official diagnosis was made, I was in an exam room and was told in a matter-of-fact tone that they had decided it couldn't be anything else.

I felt a wave of nausea and then my reaction was numbness and disorientation. I felt like I was under water and I could barely make out garbled words coming out of my doctor's mouth. I wasn't sad--I was numb. I remember after my appointment, I went to a hospital snack shop. I still felt like I was in a dream--not quite in my body. When I got to the front of the snack line to pay, a man at the door, on his way out, shouted to me "Yea, maybe next time you'll think about getting in the back of the line!" Like coming out of a deep sleep, the anger in his voice roused me and I dumbly said "What?"
"You cut in front of everybody. Maybe next time you'll get to the back of the line!"
All I could reply was "Well, why didn't you say anything?"
He said something else nasty and left. My head was spinning. The man had upset me so and I had no idea why he had been so mean to me. I muttered something to the line of people standing behind me and the woman behind the counter. It was like something out of a movie--I was only met with cold stares.
Looking back, I imagine I did cut in line. I was barely able to see at that point. It amazes me that those people were so furious with me. It taught me a lesson about giving people the benefit of the doubt--especially when you're at a hospital. It may have appeared as though I was rudely cutting in line, when I was actually in the middle of a profound state of numbness and disorientation.


I think I was numb for a few days. When my emotions began to surface, I moved into the next phase: panic. What do I do now? How do I live? Should I drop out of school? Do I take a trip around the world? How could this happen? What does it mean? How long do I have? How will I die? Will I be in pain? What treatments can I try? What do I do now? What do I do now? What the hell do I do now? During this time, I walked around with a pit in my stomach.

Panic is not something the body can sustain for long. I'd estimate I wrestled with my panic for about a week. That level of emotion was draining and painful so I slid into the next phase that I call Forced Calm. Like a switch, I was ok with everything. I assumed the character of a person who was quite evolved and at peace with mortality. I believed I was that person, but I was faking it.
I continued going to school and even added on a new job. I was busy and I was fine.
I remember going to a clinic appointment with a book. I read it before the docs came in. During my talk with the doctor, I asked how long she thought I had left to live and she said about six months. I reacted with a oh-so-calm "thank you" and went right back to reading my book. I thought I was so together! Truth be told, I read the same sentence over and over with no comprehension of what it said.

As my illness became more debilitating, the cracks in my calm exterior became longer, wider and deeper. My facade became impossible to maintain and I had to face the next phase. This is where most of Kubler-Ross' 5 steps moved into focus.
I was angry. How could this happen so soon after transplant? Why would God give me this gift of life only to take it away so soon? I questioned the morality of transplant itself and wanted to start a movement to have it banned. I was angry that my medical team asked me to continue coming in for evaluation. I was angry with other people who were buying houses and making their way in the world. I was angry with God and the entire Western medical system.

I was sad. There's not much to say about that except that I cried...a lot. It felt like a black hole in the middle of my chest that had no hope of closing up or being filled in. Often, I cried to exhaustion and the only thing that brought an end to my tears was sleep. The Illness Identity Crisis had a firm grip.

I made bargains. I tried to negotiate deals with God. I promised to pray more and be a better person if He/She would agree to stop the progression of my disease.

During this time, I did one of the smartest things I could have done: I started seeing a therapist. I call this step the "opening up to a safe person" stage. He wasn't a wizard and I wasn't immediately "fixed." I spent many hours in his office going through all of the emotions I listed. This time laid the ground work for my next two steps: opening up. At first, I felt completely alone and isolated. When I began talking with my therapist, Glen, I felt less alone. I saw Glen as "the safe person", that one person I could tell my deepest and darkest to without having to think or worry about his feelings. The ability to express my emotions, process them out and have an ally in this strange new world, was the spring board for all of my following stages.

So, Glen was my "opening up to a safe person" stage and the next step was "opening up to the un-safe people stage." This I call the "confessing and revealing stage." Everyone I loved fell into the "un-safe people" category. Not because they were mean or hurtful but because I was so scared to hurt them with the gravity of my situation. I knew when I told them how serious my illness had become there would be tears and pain. I dreaded being the one to bring hurt into their lives. By the same token, I did not want to talk with my loved ones about my feelings. They had enough to deal with on their own--I didn't want to add to their burden by revealing how difficult this was for me. Eventually, however, I began to feel safe confessing and revealing to those I loved. It actually became an extremely important component to the rest of the healing left to do.

This is a long post! I need a break! :) To Be Continued...

~The Daily Grind
~Connection
~Revelation
~Understanding
~Peace
~Gratitude
~Joy

Books!

Thank you to everyone who bought Sick Girl Speaks! this week!

It's been very exciting to ship them off to their new homes.

I will be walking on pins and needles until I get some feedback, however. I'm trying not to let my anticipation give me a headache!

I have read most of the book and I like it. Of course, as the author, I read it and think "I should have explained that in more detail" or "I wish I had included that story" but for the most part, I'm happy with it as my first attempt at writing a book.

Yes, there are some pretty significant typos in there. Yes, it makes me cringe to see them. There is a lesson there for me: Slow down and do it right the first time! When I do a project, no matter what it is, I can't wait to see the end--to accomplish the goal. This is the way I have always been. I tried to be conscious of that when doing this project and was successful up to a point. When I turned the corner and saw the finish line, however, I could no longer maintain my patience. This, my friends, is why my book has many typos!

I plan on fixing the typos when I have the money to do so. It will be a while. In the meantime, I have another lesson to embrace: I am good enough, even for typos. I don't mean that in an egotistical kind of way. I mean that I now have to work at being at peace with my project: the parts I like and the parts I would like to change. I have to understand that all of it is a reflection of who I am and, therefor, even with the imperfection it's perfect. It's one more lesson in learning to love myself, flaws and all.

Some people have asked me if I make more profit from the books sold on my website or on Amazon.com. Let me say, order the books from wherever is most convenient for you...To answer the question, I make the most profit from the paperbacks sold on my website.

If you are a patient or a medical professional, please email me about your special discount offer.

Thanks again to all the blog readers out there!

Everywhere

Sick Girl Speaks! is now available everywhere I promised...ahead of schedule!

You can see my website for the details.
If you've been to my website recently, you may have to refresh the page (F5 on a PC) to see the new info.

Don't forget to write a review on Amazon after you read it!! :)

What Are the Odds?

I got my author copies of SGS yesterday--they look good! I highly recommend iUniverse. It is still quite surreal to look over and see that book sitting on the coffee table.

Soon after my books arrived I got an email about a book by Amy Silverstein who is a heart transplant recipient. What do you think the name of her book is? Take a guess! Ok, here it is...wait for it...hold...get ready....the title is "Sick Girl"!

Holy cow! What are the odds????!!!!! How spooky and strange.

I've sorta climbed Mount Everest too

As promised, I read "Into Thin Air" after I finished "Into the Wild". Again, not a topic I am terribly interested in but Krakauer writes so well, I was glued to the pages.

I hadn't really given much thought to climbing Everest before reading this book. I had heard bits and pieces about it--the thing that stuck most firmly in my mind was that the slopes of Everest are littered with dead bodies. When I began the book it was interesting but my resounding opinion was "What a bunch of dummies!" Why would anyone do that to themselves? Why go through the pain and torture and possible death solely for the satisfaction of standing at the top? At the point in the book when Krakauer himself reaches the top (I think it's called the summit?) my perspective was only reinforced. Not only do people spend very little time at the top of Everest but when they get there, they are so exhausted and loopy from lack of oxygen there's no emotion to celebrate. All that's left is the difficult and dangerous task of getting back down.

It was during the section in which Krakauer is making his dissent that something clicked for me. This book was written after an Everest quest gone very bad--many people died. Krakauer, to his credit, spends a generous amount of time reliving the dissent--the time when many mistakes were made--and analyzing his role in his friends' deaths.

He describes walking by people who were, in retrospect, clearly in distress and he didn't take notice. He describes a state of mind in which you walk by dead bodies and it barely registers, much less alarms you. He paints a picture of disorientation and utter selfishness. All he wanted to do was get to his tent and pass out. When others claimed they were okay, he felt relieved they didn't need his help and he kept on going. Meanwhile, the reality was that many people on that mountain were out of their minds with altitude sickness and really did need his help. He was describing what it felt like to be extremely oxygen deprived.

Believe it or not, his descriptions explained a lot for me. There was a time when I could go 4 or 5 days without a shower--it didn't bother me one bit. There were days , usually many in a row, when I was completely numb. I had no feelings and I imagine if I walked by a dead body my reaction would have been equally numb. There was a time when all I could think of was me and how I would get to the next place to rest. There was a time when the world was the least of my concerns--I feel sure I walked by plenty of people who needed my help but I couldn't see it. I was oxygen deprived too.

Perhaps this is one of the reasons climbing Everest is meaningful to people--you walk up and down that mountain with death right next to you. You can't breathe or think properly for weeks, maybe months. Perhaps, through that, a person can have one foot on the other side and still come back--just like I did when I got my transplants. Perhaps, Everest teaches them what it means to be alive.

Or, maybe they're just a bunch of dummies. I dunno.

New Frontiers!

I have been playing with Moviemaker this weekend.

I have decided to add videos, podcasts and photos to my website.

So far, the video is the only thing uploaded.

Check it out!


Also, I'm determined to get back to "real" blogging...not just babblings about the book release etc...Hopefully next week.

Having a great weekend.
XXOO

Another Night of Losing Sleep

Yup, I couldn't sleep again last night.
But, guess what?
Unlike two nights earlier, I wasn't tossing and turning from wrestling with anxiety or worry.
Last night I couldn't sleep because I was so excited. Things are beginning to come together and I have soooo many plans for when I the book arrives (I have yet to get my copies).
What a difference a day makes!

Yesterday I landed two great gigs. Both are events in April--one being my new workshop and the other is a talk at a large Hospice convention. (When I have all the details I will be sure to post them under the "Schedule" section of my website.)

This is an interesting time for me. Some days I am concerned about the future--will this thing take off in the way I hoped? Some days I feel elated--like things have progressed far beyond my expectations considering I only quit my day job Sept. 1st. Some days I am down right terrified of people's reactions to my book, my message, my choices.

As I have said before, I never anticipated my emotional reaction to the release of this book. It is easy to sit alone in a room typing out thoughts on a computer with an idea that someday people will buy what you have written. Now that it has become a reality, I have an overwhelming desire for those words I have typed to be worthy of their time and money. My emotions wax and wane. This is all I have come to expect--I am only certain of the uncertainty of how I feel moment to moment.

No, there is one more thing I am certain of--I feel more alive than ever before. I love my life and wouldn't change a thing.

Funny and a little embarrassing

Please know that I did not write this quote that you will find on the publisher's website:

"After more than three decades of living with serious illness, Tiffany Christensen still isn't dead! Sick Girl Speaks! explores the world of this illness warrior."

Isn't that terrible? And hysterical?

My first chapter is called Still Not Dead. That's where they (the publishers) got it from but, the way it's written, it sounds like we are all impatiently waiting for Tiffany to die already. She still isn't dead? My Lord, how much longer do we have to wait??

Funny and a little embarrassing.

Here's the question: it's shocking and will grab someone's attention but is it just too crass? It's a balance between having something bold that will set me a part and having something so out there that it will turn people off. Which do you think it is? Should I keep it or should I request that they remove it from the website? I need your input, please!!!

To make a private comment, you may email me at tiffc73@gmail.com

Thanks!!!!

Losing Sleep

Good news! My book is now available online!

In about 3 weeks my book will also be available from my website.
If you choose to buy from me, your book will be autographed and I will get a much bigger percentage of the proceeds.

Starting in January, 2008 I will be hosting a different non-profit for three months at a time. During that time, when you buy the book off of my website 10% of what I earn will be donated to that non-profit. The first non-profit to participate in this promotion will be one close to my heart, Project Compassion. I have several other non-profits in mind for this project. If you would like to submit a non-profit to participate, please send me an email at tiffc73@gmail.com.


Here's the part that kept me up last night...there are mistakes in this book. My sister already found a typo in the first 10 pages! Proof reading is not my thing. That's why I hired an editor. I somehow even managed to miss her corrections to my mistakes! When you read this book and you see mistakes, will it diminish the value for you? Will you understand that this was a self-published book limited to all of what that means?

It makes me nervous to know that there are people out there who take grammar and punctuation very seriously and are disgusted and nearly offended by errors. There are those of us, like me, who barely notice things like that. Then there is everyone in the middle. I would hate for my message to be lost because my book is less than perfect. Do you think I have anything to worry about? Should I continue to lose sleep or just get over it?

When you do find mistakes, I would love it if you could send me an email. I will be keeping track of the errors and when I have enough money for a reprint, I will fix them...perhaps that will accompany more chapters and be called a second edition. We'll see!

Out of My Element

What a funny group we must have looked like to the rough and tumble rangers patrolling our camp site! My husband and his dog are the quintessential outdoors men. In fact, they camped together in the middle of the desert for six months with minimal supplies. Then, on the other hand, you have me and my dog--she's wearing a fuzzy coat and I just keep asking "what do we do now?" Us city girls were a bit lost!

My husband was smart enough to bring us to a camp site that had running well water, bathrooms and hot showers. Granted, we had to walk down the road a bit to get there, but that was the extent of the difficulty there. I really don't know if I would want to go camping without those things...the bathroom was quite comforting to me! So, at the end of it all, I imagine by some people's standards, I haven't really camped at all. Well, we made a campfire and slept on the ground so...that qualifies it as camping in my book. I've learned that I don't like sleeping on the ground very much but I do like being outside all day--that is, if it isn't raining!

I was surprised by how hard it was, even with the luxury of a bathroom and shower. When people talk about camping, I don't usually give much thought to it, but now I will. For people who do it for any length of time, like my hubby has, I tip my hat.

Appropriately, I was reading "Into the Wild" during our stay in the foothills of NC. I had heard rave reviews about the book and was anxious to read it. I had so much difficulty relating to the main character, however. Even though I now was able to have a broader appreciation for his wilderness feat, I just, at my core, can't understand why anyone would want to drop out of the world like that. I understand intellectually that many people feel the same way Chris McCandless did, but I haven't yet found a thread to relate it to my own life in a way that will allow me to feel compassion for his journey and his death. It seems like such a tragic death, a selfish way to treat one's family and a cowardly way to deal with life's difficulties. I know many disagree with me on these points...

As for my own inner journey during my gentle attempt at going into the wild, I discovered something a bit disappointing about myself. On the ride to the mountains and for the first day or so, I was plagued by underlying anxiety. I was only going to be gone for a few days but the lack of "civilization" and methods of communication were quite disconcerting. What if something happened and I got sick? It's so silly and illogical--we were merely 20-30 minutes from a major medical center! Nonetheless,
it took me over a day to shake my fears. This irrational anxiety took me by surprise.

I have transplant buddies who have gone to exotic places--my friend who recently passed away was a great explorer and, among other things, hiked in Butan! Another transplant buddy went to Puerto Rico and another went on a long cruise. When they told me of their journeys, I never doubted that, given the opportunity, I wouldn't give a second thought to doing the same thing. Now, I know, that may not be the case.

Don't get me wrong, I have traveled--mostly to New York and San Fran. But I feel comfortable in those places that if anything goes wrong, there will be people to help me. Would I feel that way if I went to Butan? No way. Would I feel that way in Puerto Rico? Doubtful. Would I feel safe on a cruise? Nope.

I am adventurous with my thoughts and my willingness to take career/personal risks. What I know now is that my adventurous spirit may not extend out to geographical locations! I find that disappointing.

I felt out of my element being out of my element! Perhaps that is what I don't understand about Chris McCandless and others like him that go "Into the Wild." Perhaps there are people who feel most in their element being out of their element. If that is true, I suppose I can relate only in that I enjoy being out of my emotional element and taking personal risks. I have certainly made some impressive errors in my emotional adventures, just as he made some in his physical adventure.

Are there times when you feel out of your element and it invigorates you? What are the ways in which being out of your element fills you with anxiety? Is Chris McCandless unique or is there a part of him in all of us?

Camping and Other News

Tomorrow, October 2nd, my hubby, myself and our two old dogs will be heading to the mountains for a 4 day camping excursion. This will be my first time camping EVER! I am excited. Just keep your fingers crossed that I don't get eaten by any bears...

Here's the other news:
My book is in the final stage of production! I will have the first copies, the author copies, in my sweaty little hands in 2-3 weeks. At that point, my book will be available only through my website and the publisher's website. I think it takes up to 12 weeks before it will be readily available on all of the online stores. Any copy bought directly from me will allow me to have a slightly higher profit and they will be autographed. Very exciting.
Once the book is in my hands, I will be editing this blog and any chapters that are in the book will be cut down significantly. I will continue to blog, however. I have two more books in mind and this blog is the perfect place to explore my latest ideas.


Now, here's your assignment, if you choose to accept it!
I have an idea for my website. I'd like to start a section on the home page called "Ask Tiffany." People can email me with questions about things I've written or about something in their life they want another opinion on. Once a week, I'll pick a question and post it on the website. I will have a link to my blog and post my answer there.

You are welcome to use this as an opportunity to disagree with me, agree with me or just post a question with your blog name so you get a few more viewers. I'm excited about this project and hope to have lots of question in my in-box when I get home from communing with nature!
Here's the email address: tiffany@sickgirlspeaks.com
You'll get a vacation notice but I'll read them when I get home...

Thanks!!
BTW, I will be reading two of Jon Krakauer's books on my trip: "Into the Wild" and "Into Thin Air" (perfect camping books.) If I have time I will also read "Eat Pray Love"
by Elizabeth Gilbert. I'll let you know my reviews!

What's in a name?

When I chose Sick Girl Speaks for my blog title, it was the first thing that popped into my head. I had no intentions of it going much beyond this blog. I certainly never thought it would be the name of the book or the name of my business. But, guess what? Every time I came up with new names for the book, people always told me they prefered SGS. It just stuck.

And now, here I am, for better or worse, stuck with the phrase that labels me a "sick girl."

This morning, someone asked me if I felt, by using this title, I was feeding my subconscious the information that I was, indeed, defined as a sick girl. I am a strong believer in the power of words and this is a concept that I have considered. Especially lately, when I am introducing myself and following my name with Sick Girl Speaks.

As I said, I am stuck with this title for now, so my inclination is to protest and declare that this moniker does not define me. Of course, I don't have direct access to my subconscious mind and therefor can't be sure what is going on in there. However, based on my strong defensive reaction to the question posed, I would have to say it does effect me.

I have always rejected the idea that I was a sick person. This is partly why, until very recently, I did not have any chronically ill friends. I just didn't want to put myself in that box. Even when I was incredibly disabled, I was sure to clarify that my body was sick, I was not.

Ironically, I have begun applying this label to myself at the time of my life in which I am experiencing the best health in all of my 34 years. So, why now?
I think it is partly what I stated above: I never expected it to become my tag line. I also think there was a bit of humor, I said it to myself tongue and cheek.

Perhaps, though, the deeper reason, was that this was the first time I had enough distance from illness to feel comfortable calling myself sick. Perhaps, I finally feel healthy enough to be able to say those words without feeling as though that acknowledgment will cause me to drown. I feel a faint sense of sadness when I say those words. I feel sad for the girl who has been so sick for so long. Maybe there was a time to avoid those words. Maybe now is the time to embrace them and process their meaning.

The truth is, I will always be a sick girl. No matter how healthy I am, I will never forget that that is something that can change in an instant. I have experienced how quickly one can go from healthy to sick. I have seen it happen to those around me. I can never just relax into health. Does that tempt illness or does it strengthen my gratitude for today? Perhaps both?

I don't have a perfect answer for this question because I don't have a crystal ball. If I did, I might be able to say "no, I don't become sick again for 20 years so calling myself a sick girl had no impact."

All I do know, is that balance is key. My job is now to represent the sick folks out there who are currently too sick to speak out for themselves. That is when I assume the role of SGS. I am also many other things and I do other things. Maybe if I am able to keep a good balance, I will not convince my psyche that I desire to become sick again.

My work makes me very happy. It makes me feel strong and very much alive. Maybe that is enough to counteract the label. What do you think?

The gift of planning

It seems that nearly every day I think of something that I can't believe I forgot to include in the book. My sigoth (significant other) keeps telling me that I can put it in the second edition which is true, if there is one. For now, I'm just gonna blog it!

I went to my transplant buddy's memorial service yesterday. As weird as this may sound, I was really looking forward to it. I hadn't had the chance to see her before she died so I was anxious to learn more about how/why she died as well as say my formal goodbyes. Out of respect for those there and my friend, I won't tell any details of the service.

What I will say, is that it reminded me of a lesson I learned long ago and forgot. Plan your own memorial. Even if you aren't sick, just do it. It doesn't have to be elaborately planned, just a few key points. Where do you want it to be held? How are people going to find out that you're sick or passed away? Make a call/email list and give it to someone you trust. Is there a certain song or kind of music you want played?

Most important: Who do you want to speak?? I have been to far too many funerals in which the person doing most of the talking barely knew the deceased. Somehow, in doing their research, they manage to pick out the wrong people to learn about the person and end up painting a picture that just doesn't match up with the person's life. I think there is a need to make that person's life seem perfect or to exaggerate the difficulties. There is nothing more that I want for my service than an accurate and balanced portrayal of all of me. I want the people in the room to remember me not sit there thinking "Did she really say that? That doesn't sound like something she would say!" I have picked my person and if Glen doesn't do it, just forget the whole thing!

Also, I think planning your service and leaving instructions on if you want cremation, burial etc. is a tremendous gift to those left behind. Often, people feel so much pressure to "do right" by the deceased and if they don't know what that person wanted it can be so painful trying to make those decisions. Leave the gift of planning to those you love!

After the memorial yesterday, my sigoth and I had a long talk about the point of memorials and funerals. He doesn't see much need to participate in such a thing. I can understand that but, for me, I feel it's important for four reasons.
1-If I'm up in heaven listening, I imagine it will make me happy to know I'd made an impact.
2-and much more importantly-It will give people that I love an chance to come together and get a 360 degree view of me. We all have parts of our lives that are separate from the other parts and, often, the only time those worlds come together is at a funeral.
3-For people who were not there at the end, it will give them an opportunity to find out how and why I died. It will bring closure for those that can't really feel it because they were not there to witness it.
4-I think it would make my parents feel good to have support.

Do you think funerals and memorials serve a purpose or are just an old custom that should be abandoned? Do you think people would be angry with Jason if he didn't show up to my funeral? Why?
I'm really interested in getting more opinions on this topic. Please leave me comments and give me your perspective on these things!

Warning: Uncomfortable Material Ahead!

I'm sorry...I'm gonna do it...I'm gonna talk about that thing nobody wants to talk about...you ready? I am in the throws of one of my major dips into the dark pool of PMS. Was that so bad? Okay, perhaps it was.

I never wanted to think or talk about my PMS...I guess I still don't want to think or talk about it. In the past, I was one of those typical women that could freak out once a month but GOD FORBID somebody suggest it was PMS...especially a man! Whoa. As for men, I imagine the three letters PMS fill them with dread, fear and confusion. Trust me, guys, you don't get it. Trust. Me. I have known many wonderful men who have tried but no. You don't. Stop trying.

For most of my life, my PMS was minimal. A few days of tears with no good reason, sure, but it wasn't every month and it usually passed pretty quickly. After my second transplant, however, my PMS became brutal. (I can only imagine it has something to do with the meds I take and how they interact with my hormones.) About once a month, I would have two days of depression and suicidal thoughts. Yes, that's right, suicidal thoughts. I tried taking some anti-depressants to help get through the rough patch and they helped. However, they made me so nauseous I ended up spending the day on the couch anyway. Eventually, I went cold turkey and found that, the farther out from transplant I got, the less intrusive my PMS became.

I pretty much had put the whole stupid issue out of my mind by the time I met my sigoth (significant other). We had only been together about six months when he mentioned to me that he noticed a pattern in my behavior. Once a month, for about two days, I would talk endlessly about quitting my job to do something more meaningful. During that time, I would also declare that I was coming down with something and should make an appointment to see the docs. Now, Jason is smart. He didn't mention this observation when I was in the middle of a tirade. He mentioned this when I was calm and sensible. I thought it was an interesting idea but not something I gave much thought to.

Over the next few months, Jason started tracking my moods without me knowing. When he had enough data, he let me in on his research. It was astounding. My PMS was quite consistent in its manifestations but just subtle enough that I most likely would have never noticed. My most depressive time happened a week before I began my period and so, when I did start, I never connected the mood with the bodily event. I started paying attention. Jason continued tracking. It got to the point that I would call Jason when I was feeling low and ask him if this was part of my cycle. Usually, it was, and he often followed the confirmation by predicting the future; "And on Thursday and Friday you'll want to quit your job." Sure enough, he would be right.

The result of this understanding was an ability to recognize when I was feeling feelings and when I was feeling hormones. I still feel blue or agitated once a month but I'm able to feel it without acting upon it. In fact, during those two days, acting upon my emotions is strictly prohibited.

So here I am today, with all this warning and PMS experience, and I still feel like I'd prefer to jump out of my skin.
Sometimes it's bad. Today it's bad. I don't want to speak. I don't want to do anything but I don't want to lay around either. I want to be productive but nothing I try to do works out. I have tried sitting inside and I have tried sitting outside. It doesn't matter. I can actually feel the part of my brain that is sending out the gloom and doom signals. I can actually hear the part of me that wants to be happy and I can feel it for a fleeting moment. I visualize taking a lasso and wrangling the PMS part of my brain right out my left ear. I visualize scooping it out with an ice-cream scoop. I feel trapped in my own mind, scratching to get outside this prison that I know doesn't really exist. Nonetheless, I can almost feel my fingernails scrape against the concrete walls.

I know this is PMS but it doesn't stop me from searching my mind for something to alleviate the emotional discomfort. "What can I do? What can I do?" I keep saying in my head and I have to remind myself over and over to just relax and wait for it to pass. At least I know what's going on. At least I'm not trying to fix something in my life that is not actually broken. I'm am grateful for that. Even still, I wish I could just sleep until it's over.

There. I did it. I told you about my PMS and we all survived. There's one more thing to be grateful for...

Note: Jason has always handled this issue with great respect for my feelings. He knows that, no matter the cause, the emotions I have are overwhelming. He doesn't try to argue with me or tell me that I'm overreacting. When I'm in the middle of it, he simply listens to me and supports me. When I calm down, days later, we talk about the role of PMS in my tirades. Because Jason tracks my cycle, he knows what is coming ahead of time. He braces himself and does everything he can to be helpful. Jason is very smart. And sweet. I'm grateful for him too.