Jealous, Scared and Inspired

Holy Cow. Have you seen this girl?

crazy sexy cancer blog
crazy sexy cancer website

Unbelievable. Awesome. Inspiring. Daring. Clever. Brilliant.

Oh, and...boy, am I freaking out.

It's amazing how I can be simultaneously threatened and inspired by this person and her work.

Why am I threatened? Well, to read some of her stuff you'd think one of us stole it from the other. Some of our sentences are nearly identical. Oh yea, and she got it out there way bigger and way faster than me!
That taps into a huge underlying lifelong fear of mine--what if I show up to the party too late and all the good food is gone and all the guest have already gone home? I feel like she's already done what I wanted to do--and her dress is much prettier than mine--so part of me wants to just turn around and go home before I even get to the party.

Why am I inspired? That girl is brilliant. I love her message and the way she tells it. While we have a lot of similarities, we also have a lot of differences. After my ego recovered from watching her amazing movie, I realized that there is room for my message. I also realized that I wanted to make it a stronger one. Her boldness and honesty has inspired me to go to the next level.

I know my reaction was petty. I don't mean to say that I wasn't happy for Kris Carr and all of her success. I really, truly am. She deserves all of the success she can hold onto.

As for me, I trudge on! My last day of work is today. I am chomping at the bit to get started at marketing Sick Girl Speaks! full time. I have a few irons in the fire and hope to have many more very soon.

After seeing Kris Carr's work, I woke up this morning with some clarity. Part of what has bothered me about mt title and my book is that it doesn't have a clear, underlying message. Every book needs that one thing that is the thru-line for every sub-message. It finally dawned on me what mine is: acceptance. My message is all about acceptance of what is. Working to transform it is great but for true peace, there must be acceptance that it make get better, worse or stay the same. Otherwise, you will be devastated over and over.

Based on this new revelation, I have changed my sub-title.

Sick Girl Speaks!
Lessons and Ponderings Along the Winding Road to Acceptance

What do you think?

Watch Kris Carr's movie, read her book and her blog. She rocks.

Training Wheels

I have said for so long that I longed to stand on my own two feet.

I had a goal of becoming financially independent down the road. It looks like SS has decided to make that a reality a little sooner than I had planned it out to be.

Nonetheless, I want to take the training wheels off at some point...why not now?

Freaking Out

So far, the vast majority people I have told about my disability status being "revoked" have simply freaked out. Panic on their faces. Fear in their voice.

Is there something I don't know?
Why am I the only one who seems to think I might be able to do this?

Their fear makes me doubt my tentative confidence.
Still trying to decide which plank to walk...

Thinkin' and Bloggin'

Thank you to Laurie at A Chronic Dose! She named me one of the top thinking bloggers. I feel all proud and stuff...

Now, it's my turn. I have to name my top 5. Here goes:

A Chronic Dose: I don't know if it's against the rules to name the blog that named you but I don't care! Laurie has lived with all kinds of maladies. Despite that, she has gotten her MFA, written a book, is a wonderful caregiver to her dogs and is a compassionate support system for her ailing family members. That nutshell of a resume aside, her posts are funny, smart and make me a little jealous that I didn't think of those things first! :) This blog makes me think about how to be a better writer.

Donor Cycle: I always love to see life on the other side of the illness fence. This blog is close to my heart because it is the musings of a transplant coordinator. Seeing life from her world is a real eye opener. Besides, she's hip, insightful and every once in awhile her writings will bring a tear to my eye. This blog makes me think about the perspective of all those professionals I blog about.

Midlife Midwife: I strive to be a more compassionate person but fail more times than I succeed. This woman lives her life with unmatched intensity, consciousness and love. Her stories are fascinating and her heart shines through each one. This blog makes me think about how I can be a better person.

Rachel's Wide World of Lunacy: Rachel deals with the ups and downs of Bipolar Disorder. Her blog is honest and takes you on a roller coaster of experiences. This blog makes me look at the frustrations of non-physical illness--compare and contrast.

Chronic Babe: Okay, we all know that Chronic Babe is one of, if not the best, websites for chicks dealing with chronic illness. I like reading the many different posts and selecting from the many, many topics. That's not what makes me pick this blog, though. Chronic Babe makes me think about going bigger and better. I find that site an inspiration of marketing and vision. She's taken her lemons and made them into a fancy cocktail with a twist of sass. Chronic Babe makes me think about being a better entrepreneur.

Whew! That was harder than I thought! I had plenty more I could name, but a girl has to follow the rules...



Here are the rules for winners. If you choose to participate, please make sure to pass the rules on to the next Thinking Blogs you tag!:
1. If, and only if, you get tagged, write a post with links to five blogs that make you think.

2. Link to this post so people can easily find the exact origin of the meme.

3. Optional: Proudly display the "Thinking Blogger Award" with a link to the post that you wrote.

* This award was started by Ilker Yoldas at The Thinking Blog

Dilemma

Well, the day has come. I have lost my disability status.

When I started my job last September, my understanding was that I had a 9 month trial period before they would consider whether or not to take away my disability.

Well, I was sorely mistaken. My trial period actually started in 1998! They tracked every little job, even before my first transplant. Needless to say, I am way past my 9 months.

And guess what? They want me to pay them back all the money they gave me this year! That's got to be a joke, right? No. It's not. And, if it were a joke, it would be a very un-funny one.

On top of that, my last day at work is next Friday. Money was going to be tight around here while I tried to make a career out of my public speaking but now...tight sounds like a luxury.

So, I have a big dilemma. I can apply to be reinstated and hopefully avoid having to pay back the thousands and thousands of dollars.
I can also have the peace of mind knowing that I will be able to eat and drive my car from A to B.

What I won't be able to do is make one red penny. If I do, those benefits are gone immediately.

I stand on the edge of my future. I have no idea if I will be able to make this book and this voice into a successful livelihood. There is no way to know unless I do it.

Do I take the money and settle for nothingness? Do I give up the money and face possible failure and poverty?

What happens if I become a mediocre success? I may not need that monthly check but I will need my Medicare! Unless I become a millionaire and can buy my own insurance, I can not lose that coverage. God willing, when the time comes for them to take my Medicare away, I will either be rich, dead or sick enough to reapply for disability. What options!

My instincts are telling me to have faith and let go of the safety net. I haven't made up my mind yet but that's how I'm leaning.


It's all very scary.

10 pages

That's how many pages I can edit in one hour. Does that seem like a lot to you? That seems like not many to me.
50 down, 175 to go...

Closer and closer!!

My manuscript arrived here today! It's all marked up and ready for edits. I was expecting to be overwhelmed with rewrites but my editor mostly had a bunch of grammatical suggestions. The content needs tweaking here and there but really nothing major. I'm thrilled!!

Once I make my changes I will send the book back to my editor electronically. She will make a final sweep for errors and tada! Done!

Then my little book will go to the printer. At that time I will abbreviate my posts on this blog. I'm sorry but nobody will buy something they can get for free, ya know?

When the book is out I will announce it here and give you links to all the websites that carry it.

I will also be making announcements about speaking engagements on this blog. If you have any ideas for 2008, please let me know.

My plan is to make a web site asap that will have my workshop/speaking schedule, a message board and a way to buy the e-book.

I have many more plans and I can't wait to get going.

Thanks again to all of you who read this blog and helped me keep going. The end of one road is in sight and so is the beginning of the next!

For a fleeting moment...Woman

Everyone always tells me how lucky I am to look so much younger than I am. At 34, most people mistake me for being about 18. Despite those around me who insist that is a gift, it drives me crazy. Getting treated as though I am a teenager feels less like a gift and more like being stuck in a bad movie plot-line where I am trapped in the wrong body. I have to work double duty to help people see that I have things to say that are worth listening to. As a public speaker, this can be quite discouraging. Sometimes I wish I could wear a t-shirt that says "I am older than you think I am."

Despite my real age, my outward appearance and other's initial perceptions of me have proved to be a challenge to how I regard my self. With my slim body, my youthful face and with being so short, I have never seen a woman when I look in the mirror. My friends complain about their hips and I only wish I could have the curves that define a woman. Inside, I have times when I feel like a grown-up but those feelings can easily diminish if I catch a glimpse of myself in a window. The line between girl and woman is an elusive one for me.

Something happened the other day. It happened so quickly that I almost forgot about it. I don't know what made me remember this morning, but I did.

A few days ago I looked in the mirror and I saw a woman. For a fleeting moment...I looked like a woman.

I don't know if it was because I was standing up straighter or the light was just right. Maybe it's because my hair has grown longer or because I have lost weight. I don't know why, but I saw the woman in me. I loved it. She was stunning.

I hope I will see her again very soon. Maybe, someday, she will be here to stay.

Family Support Dynamics

When someone is very ill, family dynamics can be delicate. There are burdens placed on family members and resentment can brew if the weight is not evenly distributed. The problem is, not everyone is equipped to be the down-and-dirty caregiver. Not everyone lives in the same town or state as the patient. Reality dictates that an even distribution is just not going to happen.

Nonetheless, I have found that no matter what, every family member brings their unique skills and gifts to the table. If these skills and gifts are recognized, they can be an integral part of the support network, even if part of that network can’t stand needles.

Example 1:

Luckily for me, my mother can handle needles, blood and other unpleasant bodily byproducts. My father, on the other hand, tried to be in the room a few times when I was getting an IV and he fainted each time. He doesn’t have the constitution to be the person who will hold my hand when things are being pulled out or poked or cleaned up. There was a time when that might have made him feel bad, but it became clear at some point that there were other things he could do that made a big difference.

My father has always handled the headache of insurance and hospital paperwork. When I was sick, I never had to deal with the annoyance of getting things approved or sorting out the complicated payment issues. I am forever grateful for that.

In addition, Dad did a great job of pitching in when he could to make life easier on Mom and me. I often had to do IV therapy at home and a few of the drugs had to be mixed up less than 1 hour before the dose was given. This was very aggravating, especially in the middle of the night! Nonetheless, my father took this on as his job and I never had to worry about mixing up my meds again. They were always waiting for me when the time came. What a relief.

My father also did a good portion of the spoiling. My appetite was often very poor so when I had a craving for something it was an event to celebrate. Unfortunately, those cravings didn’t always happen at convenient times. My dad was always willing to run out, no matter what time, and track down the food I desired. I remember one time when he actually convinced my favorite Italian place to make me a pizza after they had closed! His willingness to do this made me feel very loved.

Dad avoids direct contact with all things medically painful or physically distressing. (Better that than to scrape him off the floor!) Mom holds my hand during all the procedures while Dad does many other valuable things to support me in my times of need.

Example 2:

Sometimes the contribution a person makes to a difficult situation is entirely unpredictable. My two sisters and their families live nearby and have seen me weekly through all my highs and lows. My brother, on the other hand, lives far away and we only gets to visit a few times a year. Despite the distance, he turned out to be extraordinarily helpful after both of my transplants.

Jay flew down and was by my side, with the rest of my wonderful family, the day after both surgeries. During that time I was intibated and could not speak. This was an especially distressing time for me as I had many questions and comments that had to remain silent. I attempted my version of sign language, more like a morphine-inhibited game of charades, but nobody could understand me. Except Jay.

I don’t know what it was or how he knew but he always comprehended my silly hand signals. Whenever I started trying to communicate, people learned to go get Jay. It was so soothing to know there was someone who could answer my questions and even get my hand signal jokes!

There was no way to predict that Jay was going to be so helpful in that capacity but it was very sweet that he was. It made me feel so much closer to my brother and I will never forget all of our mute conversations; no matter how hazy the drugs were making me feel!

The Lesson:

Support can come in many forms. Taking care of a sick loved one requires a team. It’s easy to place expectations on people that do not match with what they are good at. Families and patients should keep on the look out for what an individual naturally gravitates towards. Would you rather run errands than spend long hours sitting by the bedside? Would you rather have long heart-to-hearts about life and death in lieu of dealing with the insurance company? Everyone has a part to play. The trick is figuring out who does what and honoring each other’s roles as equally valuable.

System Failure

To Whom It May Concern (And Who Does It Concern?):

For the most part, my political days are over. I marched on Washington a few times in the name of animal rights back in 1990-1991. Since then, most of my views have fallen more into the gray area. Even on those topics that I still get fired up over, I have lost faith that my lowly opinion would have any influence of our massive governmental machine. When I am in the crossfire of a political debate, for the most part I keep my mouth shut. I just don’t see the point in arguing.

I am writing a book that holds the potential to explore many of our country’s political healthcare issues. In fact, sometimes I feel guilty for not being more involved in that aspect of patient care. Nonetheless, my focus tends to be more on my immediate experience and those things I deem to be within my power as an individual. I don’t really want to deal with politics.

That said, I am feeling nervous about my future and I can not deny the impact our government could have on my life in the coming years. I began working a part time job about six months ago. Because I have been on disability and Medicare, it was my duty to report that I had gone back to work. I’m not nervous because I have done anything wrong. I am nervous because there are a lot of rules and I don’t want to make any mistakes. If I do, I can potentially lose my disability status.

When people learn I am on disability, they sometimes react with surprise. They think because I can walk, talk and stand upright that I should no longer be taking anything from the government. People may judge me because I am on disability but what they don’t understand is that I do not have the energy to work a full time job and I need Medicare. Medicare is directly linked to disability status.

I quit college because of my health and therefore my skill set is limited to lower paying jobs. I do not get benefits where I currently work and even if I did, it’s highly unlikely the office could handle some one like me on their group insurance. I have to approach my work schedule carefully so I can keep my disability status. If I lose my disability, I lose my insurance. Can you even imagine the “pre-existing conditions” list on my private insurance application?

The chance that I could find a company to work for that could provide me with insurance is slim. The prospect that I could pay for my own is simply impossible. What would someone like me do without insurance to pay for all of the transplant medications? The answer to that question is easy: they would die.

All of those ponderings are head spinning but that doesn’t even take into account what would happen if I became terminal or chronically ill for the third time. I would have to quit my job and apply for disability again. What would happen to me in the meantime? How would I survive while I was waiting for Medicare to kick back in? The thought scares me to the bone.

It seems to me a rock and a hard place. If I work, I run the risk of losing necessary, life sustaining government funded coverage. If I don’t work I am not fulfilling the entire goal of transplant: to live a more normal life. Like so many governmental programs, this is one more example of a good idea with no plan to help transition people from one end to the other.

I really have no right to complain. Compared to many other people, I have it good. I have been able to be on Medicare for ten years and have been able to have my father’s insurance as back-up. Medicare paid for two very expensive lung transplants. My insurance pays for a regimen of medication that, in one month, costs about as much as my rent for a year. I am very lucky to be alive and to have gotten the care my insurance provides. I really have no right to complain but I am going to anyway.

I did not get this transplant so that I could sit at home on the couch and collect government money. I also did not go through all of the pain and suffering so that I could live a more normal life, get a job and turn around and lose my insurance. How silly would it be, after all of this, to die because I can’t afford to buy my transplant medications!

Things just don’t add up. Medicare will pay for surgeries that cost a million dollars but won’t follow through and pay for the medications that keep you alive afterwards unless you promise to make less that a certain amount each month? I don’t understand. All I want to do is go from being sick to making a contribution to the world. The organizations that got me well are the same ones standing in my way.

We need a bridge for people like me. Where is the bridge?

Sincerely,

Tiffany