wear 'em proud

Peggy sent me an email this morning about a great idea she had. Spread the word!

She said:

"As a show of solidarity in the fight to find a cure for Cystic Fibrosis, may I suggest that we all wear our "Love to Breathe" necklaces on Christmas day? The positive vibes coming off so many incredble women on such a special day will certainly make a difference! If you like the idea, please pass this message along to anyone else you know who owns a necklace. I believe there are over 80 of us so far.

Happy holidays!

Peggy"

A Strategic Plant

I have been going to the post office every two or three days over the last few weeks to mail necklaces across the country, so I have gotten pretty cozy with the people who work at the desk. There is a new guy who is young and seems to be passionate about his job at the post office. When I got to the post office last night there were only a few people in front of me in line, but as I waited more and more people filed in with stacks of packages overflowing their arms. I thought about how that new guy must feel, still a little slow and unsure of the procedures, and facing a huge line of anxious Christmas-infused (for better or worse in some cases)people. Then I noticed that I couldn't really see his face because it was obscured by a rather large potted plant. My personal theory is that he has positioned this plant to strategically block his view of the daunting line. We all need such a plant. Just think- peaceful green leaves partially obscuring the tedious tasks that lay in wait, and lending focus to the present moment.

Or maybe that's just the only place the plant would fit on his desk. Perhaps I'll ask when I go back tonight.

Body Project: part I

After another surprise pregnancy last month that went away as shockingly as it came, (that's miscarriage number three folks) I have been really wanting baby number two. Trouble is- my body doesn't seem to agree. With the pain a bit out of control, I suppose now is not the time, but I am having trouble accepting this. Nothing makes me angrier than when the pain takes something away from me- especially this.

I finally got to go to my follow up appointment with my pain doctor. While I was so excited about his honesty and apparent concern previously, it was like a whole different doctor showed up to my appointment. He didn't remember me, or even take the time to look over my chart. It went roughly like this:

He squinted at the computer screen and then at his watch. Finally he looked at me and said, "We did the spinal block a few weeks ago?"

I nodded.

"How did that go?"

I was a little shocked that he hadn't written down my reaction. "It made the pain significantly worse. Remember I called you?"

"Ah, yes. Any relief yet?"

"No."

"The sensitivity must be better, you're wearing shoes."

"It's snowing outside."

"Well let me see your foot." He poked at me for while and then decided that I should go back to physical therapy. The dumping ground for mysterious complaints.

"I have been to therapy. While it helps a little, I can't afford my copay. It more than doubled last year to $40. My therapist likes to see me 2-3 times a week." He looked at me with disdain, like he had no way of understanding how I could compromise my health over a little money. "I can do the therapy at home and maybe go in once a month. I know how to stretch my foot. It just really hurts for hours after."

"Perhaps I could prescribe something to help with that."

"That's my next question. I've been planning another pregnancy soon. But would it be worth it to wait a few months and go back on the Lyrica to give my body a break? Can that break the pain cycle?"

"Yes, actually." he sounded shocked that I would have such an idea.

"But is it worth it to put off my baby plans?"

"Now that's a tough question. You don't want to go into a pregnancy with all of this pain." He chuckled and then continued, "that will just add a whole bunch of new problems."

"I had all of this pain with the first pregnancy too." Surprised, he thumbed through my chart again.

"Well then I guess you're pretty tough." I was getting so annoyed by this point, and he could see it on my face. "Lets take care of this problem in your foot first. You need to have the attitude, 'I AM going to get better!' Your attitude is very important."

"I really don't mean to have a bad attitude. It's just been 19 years. I've tried pills, therapy and surgery and no one else could fix my foot. What is going to change?" To diffuse the tension I moved onto my other questions. "What about the snail toxin stuff."

"Prialt- that is only for people who have exhausted every other option." I felt like I had tried just about everything and that maybe I didn't understand why he wouldn't consider me as a candidate for it. I was starting to suspect that he didn't remember much about my symptoms. "There are better options like a spinal cord stimulator."

"But that only helps one part of the body, right?"

"It will affect everything below the waist." Now I was positive that he didn't remember that I have pain everywhere.

"What about my hands, arms, shoulders, back and face?"

"Um," he finally glanced at the picture of a naked man that I had colored in the waiting room to illustrate my pain.

My frustration finally spilled out of my mouth: "I have pain in my whole body!" I felt like I needed to say it again. Slowly. "My whole body." And then just for good measure I added, "for 19 years."

"Why do you think that is," he asked ME. Really.

"Uh... In Maryland, they said I had Thoracic Outlet Syndrome and Carpal Tunnel." He proceeded to define the disorders. "I know what they are. I had surgery to correct both, but who knows if it helped. At Stanford they said the RSD spread."

"I don't think so." He tapped my elbows and my wrists, "does that create the pain you are describing?"

"No."

"It's not your nerves."

"I feel random burning pain that could be anywhere in my arms and gone."

"Nerve pain does not behave that way. It is constant"

"I have the same pain in my legs. Does that mean it's not RSD in my foot either?"

"No. This is RSD, no question." as he pointed to my foot. "But I don't know why your arms would hurt."

There was a knock. The nurse opened the door a crack and a cheery voice chimed through, "your next appointment is here."

My face must have twisted up with all of the frustration I was trying to keep silent because he said, "I believe you. And I will figure out what is wrong."

I felt like I had been violently thrown back to square one. He started listing all of the different types of doctors he was referring me to.

"I know you have to see your next patient, but wait, you have really never heard of pain like this?" He had been practicing forever. I couldn't believe I was really the first person to have these complaints.

"There's a lot of reason people feel pain. There's Depression..."

I was desperate. I had ask again. "While you were talking my shoulder was burning here, and then it moved. And then here. Now it is here." Finally he reached out and poked my arm. I flinched and jerked it away.

He continued to pinch my arms. "Does it hurt here, here, here?" My arms were burning like he'd just stirred the fire.

"That is muscular pain."

"It's my muscles, not my nerves?"

"We need to rule everything else out. You need to see a rheumatologist, hand specialist, and a neurologist. I'm writing down possible Fibromyalgia in your chart. Let's do the Lyrica and send you to a few other doctors. We'll talk again in three months."

My head was spinning.

"Are you alright?" he said.

"No. You have brought into question the last two-thirds of my life. Fibromyalgia? and RSD? Does that even make sense- that I could have both?"

"It does," he said quickly as he ushered me into the hall. Make a follow up appointment here," he lead me to the desk, and disappeared down the hall. He came back with an arm full of Lyrica samples.

I have taken the stuff before. Pain has always been the first thought on my mind for what feels like my whole life. The Lyrica knocked it down a few slots in my consciousness to the point where, if I was sufficiently distracted, I could forget about it for a while. In the end, though, I couldn't take the nausea, confusion, blurry vision, risk of birth defects, cancer... the list goes on. When my lame insurance company refused to pay for it, I gave up and stopped taking it.

I left the office in a whirlwind of emotions. Mostly, I felt sadness about putting my baby plans on hold. I felt irritated that I have been waiting for science to make a magic pill that will make all of my problems go away, and I was desperately hoping that Lyrica is not the best I'm going to get. I felt frightened about going back to the undiagnosed stage. But I did feel a little excited about putting all of the energy and resources I can muster into my health for a little while. Maybe great things will happen.

An Honest Doctor

If you have spent a lot of time in hospitals and doctor's offices, you surely thought I was trying to be funny, but no- I have actually met an honest doctor.

A few weeks back I was playing hide-and-go-seek with Rosie. Being much too big to play this game in my tiny kitchen I smashed my toe into a cabinet while crawling on the floor. Tears welled in my eyes and the pain took my breath. I had to focus on catching my breath and not screaming. A fun characteristic of CRPS (Chronic Regional Pain Syndrome) is pain that is out of proportion to the severity of the injury.

I have had CRPS since 1989 when I was hit by a car. It was really out of control back then, and I couldn't walk for almost a year after the accident because of pain and tightness in my foot. Treatment helped the sensitivity so that I could put weight on my foot again, and so that my physical therapist could loosen my ankle enough to walk. But the pain never went away, and has spread to the rest of my body over the last 19 years. Even though I have dealt with a great deal of pain over the years, I have always been grateful that the more serious symptoms of the RSD did not return. Until now.

About a week after I squished my toe I noticed that it was getting harder to go up stairs. My ankle just didn't seem to bend enough. A few days later I was going to the store and had to take off my shoe and sock even though I was driving, because they were bothering my skin. The stiffness and sensitivity gets worse everyday. I already can't walk as far I used to without sitting down. I am really starting to panic. I am worried that in the next few months I will no longer be able to walk at all.

I went to a new doctor to get the same spinal blocks which helped so much the first time. I had the block last Wednesday, but it has only made the pain and stiffness worse. My doctor finally returned my calls this evening, and told me he didn't know what to do next. He could have lied or blamed me, but he simply said he didn't know what to do. It was actually nice.

Why Memoirs Are Important

I am in the middle of reading Angela's Ashes, and I am enjoying it immensely. When it came out I was not in a good place in my life, and I felt like that last thing I needed was to read about more pain and suffering. But after three different people compared the way I have told my life story without self pity to Frank McCourt's book, I thought it was finally time to give it a read. I can only say that I wish I had read it sooner. It has sparked a lot of deep thoughts, and I thought I should write them down.

There is a force in nature that maintains balance in all things. Some might call this power God. I am just one girl, and I wouldn't pretend to know the shape and reach of this force; whether it is some omnipotent being who gives and takes and judges. I only know the balance I see in the world. It is our job to maintain this balance by caring for ourselves, those around us, and everything we touch.
To each of us our sorrows are deep and real, and many of us pray for relief. The Universe hears all of us crying and grasping tight at her skirts like infants, begging to be picked up, carried along, comforted. Our troubles exist in the same time and space as all others, and compared to the pain of some, our lives would feel blessed, but we are not always open to that knowledge. If only we could hold up our sorrows to the light cast off by every other creature, maybe then we could see that right now may not be our time of greatest need. We might even notice the problems of others near us and realize that we can help.
Putting your own suffering in perspective by knowing the lives and challenges of others is a gift of clarity and peace. I believe that this is why memoirs are important. Reading other people's life stories has helped me to appreciate the many things in my life that have been blessings, and to understand the things that have caused me pain a bit better.

I am so honored

Taste of Salt Lake was fabulous this weekend. There were so many people there, it must have been a record amount of money raised for Cystic Fibrosis research.

I donated two pendants to the auction, and each one was paired with a painting by Somer Love. They sold for around $300 each! I never expected them to do that well. Several people also picked up my business card that night, so I have had a pretty steady stream of orders. It was a great night.

http://www.lovetobreathe.com
lovetobreathe.blogspot.com

Back in the Saddle Again

I have nursed my wounds long enough (too long, I'm sure.) Yesterday I sent out yet another query letter to yet another agent. This will be the 39th agent I have queried. I finally counted and I feel better because it felt like I had received over 100 rejections.

I have a new vision for the project, which means a lot more work, and a lot more writing. Fingers crossed kids!

Live, Love, Breathe

For Christmas last year I received a calendar from my friend, Somer Love. Each month featured people, young and old, who are living with Cystic Fibrosis, a terminal lung disease. Somer graced the month of May, so I was very excited to hang it up. As I read the stories each month, I was inspired by how each person faced their challenges with cheer and strength. Then I got to August and saw darling 12-year-old Haley Palmer. She raised hundreds of thousands of dollars for CF research by making and selling bracelets. I thought, “I know how to make jewelry... If she can do it, maybe I can too.”

Somer and I put together a line of pendants based on the theme from Somer's paintings, “Live, Love, Breathe.” Each one is handmade from pure silver, and signed on the back. 100% of profits are donated to Love to Breathe for CF research. With the help of several dedicated friends who wear the pendants and spread the word, we have raised over $500 in just three months.

Haley Palmer has since succumbed to her battle with Cystic Fibrosis. I am saddened to have never known her, but I will follow her lead. I can only hope to be half as successful as she was. Haley said that you can't make footsteps on history sitting down. So stand up and support our efforts to cure Cystic Fibrosis.

Next weekend we will enjoy another fabulous Taste of Salt Lake. I can't wait to dine on food from all of the finest restaurants in Salt Lake. Two of my pendants have been donated to the silent auction, but you can by your very own at lissabird.etsy.com.

Princess Rosabella Eliza Alice

Halloween 2007

I had just had this beautiful baby girl six weeks before Halloween, and of course I wanted to dress her up in pink from head to toe. Her dad wanted her to be something hard core like a ninja or a Volcan (since she already had the right hairstyle.) Of course we did nothing about finding a costume until Oct 30th. That morning as Lander was leaving for work he kissed my forehead and said, "Rosie can be a princess if you want." Hooray!

I rallied my sister and the three of us set off to find a costume. If you wait until the absolute last minute, costumes are 75% off at Toys R Us. Amy and I found this cute pink princess dress that was clearly marked 3-6 months for $6.89. After we wrangled it over Rosie's floppy new baby frame in the store, we realized that it was a bit big, but would probably be fine with some strategic safety pins.

No one has accused Rose of being a large child, or even regularly sized, but I thought she was getting so much bigger lately, thanks to her mac & cheese diet. I was positive that her princess dress would be too small this year, but I dug it out of the disaster area- I mean storage closet just to check. It's actually still a little big.

I've got something to say

I cozied up with the latest installment of Boston Legal on the DVR this morning, only to find my home state of Utah being ridiculed. Since I lived in California for several years, I am adept at defending our strange, but beautiful state. In fact moving away from Utah only taught me to love it more. I am so happy to be back, and I wouldn't want to live any other place.

So I thought- yes! I have something to say on that blog thingy. I can tell people about what a wonderful place this is to live. But then I remembered the day that NPR told me that my fellow community members have sent millions of dollars to California in order to suppress basic human rights. In fact $19 million dollars have been donated by members of the LDS faith to take away some people's civil right to be considered EQUAL under the laws of our country. That is about 40% of the total funding for Proposition 8, a ballot measure in California that would once again make gay marriage illegal.

It was not very long ago that America had laws which took away the civil rights of its citizens based on their skin color, or their gender. I remember learning about slavery, Jim Crowe, and women's fight for sufferage, and wondering how moral people stood by and did nothing. I believe that in the not too distant future we will look back on our country's effort to punish yet another group of people for being different with the same shame we feel for Jim Crowe laws, but here I stand doing nothing.

So it turns out, I don't have anything nice to say about Utah today. I don't mean to disparriage every member of the LDS faith. In my experience they are kind people, who are genuinely concerned for well-being of others. In every group there are those who take their beleifs to the extreme. However, for a group of people who were once persecuted unfairly by the government, one would think they would pause to think a little more deeply in this instance.

Authonomy, I want my life back

About two months ago, Kris sent me a link to a new website called authonomy.com run by HarperCollins. It is a place for writers to post their work and get feedback from a lively community of other writers and avid readers. The top five books that receive the most support get sent to an editor at HarperColins each month. Most of you will remember my constant and annoying plea for votes. My book was doing great until they changed the rules in the middle of the game. Suddenly votes from friends and family didn't count as much as votes from regular users of the site. I dropped from 17 to 55 in one day. It was heartbreaking.

The book is back up to about 25 these days, but I'm convinced it will wallow there forever if I don't start working the system. I need to get active in the forum and make some friends, but I find their conversations and arguments silly. I can't imagine spending any more time on that site than I already do.

I did receive the nicest comment shortly after the last agent rejected me, which made me feel a lot better.
A perfect stranger who didn't have to say a thing about my book said this:

Lissa. I think this is a wonderful read.

I'm sure that everyone believes their lives to be worthy material for a biography or film or both, but often as not, even when the material is strong enough, the presentation is not. I found this well written, easy to read, and somehow familiar? Not that I have heard this story before - how could I?! - but the style and flow seemed very... comfortable as a reader. The sort of thing you could pick up and return to as if you hadn't been away from it for a while.

For some reason I found myself reminded of Angela's Ashes - yet neither your writing style or plot are actually anything similar! There was just something about the 4 chapters I have read that gave it that feel of being more than a run of the mill biography, where someone preaches about their life as being either special or extraordinary.

So I've shelved this for a while. Books are meant to make you think. I have always felt a good book is one that you think about after you have finished it, and not just one you can lose yourself in when reading it. I find the American style so different for many reasons, (Mom v Mum, etc etc), and thinking about the differences between our childhoods is thought provoking enough for me. Also, the ending to chapter 4 caught me, so I know I will try and come back to read more - another good sign.

A lovely book, and you have my best wishes with it.
Jason

I love it when strangers are nice. For all of authonomy's faults, a few people there have inspired me to continue my quest to be published. So I will rewrite my pitch for the 9th time and start sending it out to agents again.

If you want to take a look, you can find some of my book here:
http://www.authonomy.com/ViewBook.aspx?bookid=1375

Keep on Keepin' on

Picture it: A book signing at Borders Books and Music about two weeks ago.

My target: Richard Paul Evans.

I dragged Kris and Rosie to Murray on an insane mission. For weeks I had been obsessing over finding someone who knew Mr. Evans, hoping for an introduction. I was coveting his book agent, and hoping for a recommendation that would send my manuscript to the top of her slush pile. After another tenuous connection to Mr. Evans fell through, I decided to just make my own. Since I had been studying his website in an not-at-all-stockerish way I knew that he had a book signing coming up.

The line was much shorter than I had anticipated, leaving me very little time to muster up the courage to talk to Mr. Evans. As people trickled through the door, I let them go in front of me, not wanting an audience.

Finally it was my turn. A few chapters of my book shook in my hand. I opened my mouth and begged the Universe to let something intelligent come out.

"Um," I said. I was off to a great start. "I wrote a book... about my life..." I swear I went on and on for roughly 17 minutes. I couldn't stop myself. The look on his face was painful. He set his pen down on the table and sat back in his chair, simply waiting for me to stop talking.

Then he said, "I don't read manuscripts anymore, since someone sued me a few years ago."

My eyes popped out, and I shook my head. "I would never..."

He held up his hand and finally smiled. "I can still recommend you." He picked up his pen again and wrote down his agent's phone number in New York.

I called the next day, and was told to email the whole book. Then I waited.

And waited.

Most agents had sent me a quick reply that they were too busy, so I tried to convince myself that a 14 day delay was a good thing.

Then the email finally arrived. She was too busy. Best of luck.

I think I can, I think I can...

I'm terribly afraid that I have nothing to say. I suppose we'll find out, huh?

I could rant about trying to publish my book. It seems like the dumb book is all I can talk about in person. Now my friends, you can treat yourselves to a healthy dose online too. I know I am selfless. I live to please.

I could talk about pain... I don't know that I have a lot to say about it. I've had chronic pain for 19 years, and I hardly breathe a word about it. I have decided that I am not doing myself or anyone else any favors. Perhaps someone else can learn from my experiences, so I will do my best to write about them. Maybe even I will learn from them.

Of course I could just talk about Rosie, Lander, Steve and the rest of the fam. This could be a one-stop Lander gossip tell all. But there's rarely any gossip, so don't get too excited.

See- I've said nothing at all, but I have filled up this little box. I will take my vague sense of accomplishment and run (figuratively, of course.)