How Quickly We Forget

The brain is made to forget pain. When it is chronic, you never really get a chance to forget it. However, my approximate year spent in remission from CRPS/RSD and Fibromyalgia was pleanty of time. I was not 100% pain free, but compared to where I started, the relief was more than a dream come true. So here I am in my third trimester of pregnancy, and to put it mildly-- I hurt. A fair amount of discomfort is normal at this stage, but I'm quite sure that my nerves are more active than they should be since this didn't happen with my first baby. I've been dealing with all of the classics neurological pain has to offer with the shooting, stabbing and burning pains popping up randomly all over my body. The worst part is that I can't deal with it like I used to. I wince, gasp, and shudder. I feel like a brand new pain patient trying to find ways to cope, and failing. I have lived in pain for more than two thirds of my entire life, you'd think I'd know how to do this. But really, this ability to forget is a beautiful thing. It's the only way we ladies would consider having more than one child after all, but I would sure like to have my coping skills back. At least for another 5-8 weeks.

We're afraid of losing this quality of care?

Let me say a few things about the standard of health care in America.

I have CRPS (Chronic Regional Pain Syndrome, formally called RSD). Granted it is not a well understood disease, but compared to when I was diagnosed 19 years ago to today, general knowledge about CRPS has increased by leaps and bounds. Some doctors even call themselves specialists.

I have seen these specialists. I have been to Johns Hopkins and Stanford- both supposedly offering the highest level of care. But it wasn't until a pesky pain I have been dealing with in my foot for years finally got out of control, that someone took a basic x-ray of my leg. My family doctor told me last night that I have such severe Osteoporosis in my left leg that I could break my foot just by walking around on it. This could have been useful information to have before now. I probably have a stress fracture in my tibia, but I won't know until the MRI tomorrow.

I knew from poking around on the internet that Osteoporosis was a common problem among people with CRPS/RSD, but I figured that if this was really a concern for me, one of the many doctors I have seen would have checked for it. I even had a terrible case of it right after my accident and shattered my ankle in three places because I was trying to keep up with my friends. I have told that story to every doctor I have seen about my leg, but none of them ever checked to see if the Osteoporosis was still a problem.

One dumb x-ray a long time ago could have spared me this pain, hassle, and possible surgery. I guess what I'm saying here is that YOU are in charge of your own health care. Be educated and ask about possible complications. I have always worried about offending my doctors by mentioning research I have found on the internet, but no longer.

The Music and You and the Gift of the Trees

I wish pain behaved more like a house guest who won't go home for whatever reason, but with some bargaining, might be convinced to grab a hotel room for the night, and maybe do the dishes before she leaves.

I attempted every intervention I knew to ditch the pain last night before the Xavier Rudd concert (!! I'll get to that in a moment, but must finish complaining first) but still found myself lying the grass in front of the Delta Center, showing the husband how to adjust my old lady hip so that, just maybe, I could put an ounce of weight on my right leg. But really, who needs the right leg anyway-- especially when the left has been enhanced with RSD!

The adjustment mostly worked, but I still needed to use Kris's body like a crutch. I dragged my sorry joints to the bathroom, unassisted past the door and clinging to the wall even though it offered no support, to pull the leaves and grass out of my formerly cute party hair. Then I got to face the indignity of walking (I use the term loosely) to the end of the line at the door. I hate to limp in public.

Once the music started all was (almost) forgotten. The first time we saw Xavier was in San Francisco. We were there to see The White Buffalo, who opened that night. There was giant lump of something on the stage which was covered by a tie dyed bed sheet. Once the Buff was done we simply had to find out what was under the sheet so we stayed. It was drums, digeridoos, and four or five guitars all attached to a giant frame so that Xavier could play them all at once. Before the show, we had downloaded a live show from Australia, and Kris and I had both assumed it was a full band, but it was just this dirty surfer with awkward hair. The digeridoos were so big they touched the floor, and shook the building when he played. It was amazing.

When we moved home to Salt Lake, I worried that I would never get to see Xavier again. Lander and I traveled to Denver to catch a show a few years ago. Detailed here. Last year marked his first show in Salt Lake. There was a pretty good sized crowd, but this time, everyone came back and brought five more friends. We were squished right up against the stage.

It was the husband's birthday as well last night, so my cute sister thought ahead and taped four sheets of paper together with "Happy Birthday Kris" scrawled across them. At a strategic moment I held the banner over his head and waited for Xavier to glance at us. We were only about 5 feet away, so it was hard to miss. At the end of his set, I held up the sign again, and jumped this time for emphasis. Xavier took it from me, and stretched it out for the whole club to read. Then he pulled Kris on stage, gave him a huge hug, and wished him happy birthday. The whole place went nuts! After Kris got down off the stage, he crumpled in a pile a revelry, and absorbed the good will of the crowd. Awesome birthday! Amazing show! Clever sign-making sister!

My Marthon

A house in St George near the finish line of Lander's first marathon.

Last night Lander and I packed up the baby and drove up the canyon for dinner. On the way up we passed a runner, with the most muscular legs I've ever seen, powering her way up the constant climb. We were both infinitely impressed by her pace and obvious strength. It was a clear demonstration of endurance and ability, and for more than a moment, I wished I could do that.

This morning I woke up to a seemingly endless list of things to do. Most of the things I did were hardly interesting enough to explain, and I certainly couldn't squeeze any jokes out of my two trips to the grocery store, or the chair match between me, my toddler, and the printer. Throughout the World's Most Boring Activities Part 682: Revenge of the Smart Women in Business Grant Application, I ignored the pain in my body. I pushed the exhaustion out of my consciousness. I felt like that woman from last night. Only I was attempting to reconcile mommyhood, housewifery, and the art of succeeding in business (while trying as hard as humanly possible) with the constant drain of chronic pain and the all-consuming exhaustion that comes with it. I mentally awarded myself a Finisher's Medal once I reached the end of my to do list. Too bad no one at Smith's recognized the feat of strength they were witnessing. Perhaps it would have been more inspirational if I had been wearing one of those cute little running skirts.

Body Project part III: Baby Blues

I feel like everyone I know is pregnant, and being pregnant myself is all I can think about. I decided to put off my next pregnancy for 6 months because of... you guessed it: pain. I can't explain how many things this pain has taken away from me, and I hate it when I am forced to change major plans like having a baby because of it.

I have taken this time to give the Lyrica a try and to focus on my health so that I can be as healthy and strong as possible for the next pregnancy. The pills are a great help, but if I forget to take it the pain comes back full force. I was hoping that reducing my pain levels with the pills would help to break the cycle of pain causing poor sleep and stress on the body, creating more pain. I was hoping that I could go without the medication eventually, if I got my body in order over the next few months. It's only been a month but I'm already feeling hopeless and like I'm wasting my time. I have been dealing with this for so long that it really seems impossible that it would ever go away.

The book I read about curing Fibromyalgia says that if I can eliminate my triggers then my symptoms will go away. It's so simple- why didn't I think of that?! Unfortunately the trigger that caused this whole disaster is the RSD/CRPS in my left leg, and that is never going to go away, since I don't have the guts to try the Ketamine coma any time soon. So now what do I do?

The lyrica gives me a significant reduction in overall pain levels and that is really exciting. Nothing I have ever taken before has worked this well, and I feel so lucky that it works for me. I have more energy these days, and it's only now that I feel better that I fully realize how limited my life has been. Since Lyrica causes birth defects in little mice, I have to stop taking it before the next baby. My biggest worry is that spending all this time without my full customary level of pain is going to ruin my ability to deal with it.

So this pretty much sums up my worries about when to get pregnant. Don't even get me started on if I should do it! What is I do have FMS and what if it does have a genetic component? Those are pretty big ifs to base such an important decision on.

Body Project part II: Lyrica

I have always been angry when I go to the doctor looking for a real solution for this pain, and all I get is a slip of paper with some new name of the same old pill that just causes me more problems than it solves. I have tried so many things: Desipramine, Amitriptyline, Paxil, Prozac, Midirn, Morphine, Methadone, Hydrocodone, vitamins, minerals, a myriad of "natural" treatments... I'm sure I've left out half of the pills I have tried.

I am about a month into my 6(ish) month project to heal my body, and get ready for baby number two. I have been on Lyrica, and for the first few weeks it worked really well. Some of the pain was still there, but it was much easier to distract myself from it. Rather than being a constant thought behind everything I did, I could actually go a few hours without thinking about pain. That hasn't happened to me in almost 20 years.

Then I got the Flu. My body takes even the tiniest amount of illness as an open invitation fall to pieces. My pain levels have been pretty severe and unchanged by the Lyrica for almost two weeks now. I don't know if it's just the flu even though I'm not sick at all anymore, or if this means that my dose has stopped working and I should take more, or that Lyrica has entirely stopped working for me.

In other news, I read a book. It's called The Fibromyalgia Solution by David Dryland MD. I haven't gotten to the solution part, but the first section which explains the causes and symptoms of FMS felt like having a conversation with an old friend. Everything was so familiar and reassuring. I have to set up an appointment with a rheumatologist to find out more about it.

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.