Tuesday, December 23, 2008

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!


Friday, December 19, 2008

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.

Thursday, December 18, 2008

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?"


"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?"


"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.