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.

Well Hello Blog World,

I know I am not the first person to feel this way, but somehow it's November.

Updates...

Pregnancy is going well in terms of all the things I thought would go wrong. It took me quite a bit longer to get pregnant than I planned (note to self: planning such an event is just silly). I had hoped that I could slide right off the coat tails of remission to pregnancy, and control the pain better that way. I worried the longer it took that I would start feeling really crappy again at any time, but it didn't happen. There were days and weeks that were decidedly unpleasant, but on the whole my pain levels were the lowest I can ever remember. And they've pretty much stayed low in my new delicate state.

So I would say I'm doing great... except for the new Divine Comedy of Hormones that is taking place in my body. Thanks to hormonal irritation, my gallbladder has called it quits. No more red meat, dairy, or greasy things-- let's just say anything that actually tastes good. There's the eczema, sciatica, heart burn, indigestion, insomnia, and graceless emotional outbursts. But on the plus side, my butt looks amazing. No, really. Perhaps my hiney deserves its own blog post.

In other news, I've decided to give this business thing another go. A natural slow down in sales coincided nicely with my first trimester, near-comatose state, but I'm ready to make a run at this thing. In other words... Google gave me free advertising for a spell ;) There will be a few new designs for Christmas. Stay tuned.

I hesitantly put some paintings in the Etsy shop, and watched them do nothing for a while... But then! Someone I don't know gave me money in exchange for art and said really nice things about my work. Let's hope she still feels that way now that they've arrived. It was very stressful to put my paintings in a box and send them out in the world to be seen (and judged) by others. But here's to getting the opportunity to try it again.

Next up-- t-shirts and cute tiny baby things. I can't wait!

Check out my new digs over at lissabird.com

The Body Project: Update

I really think I've done it! I think the Fibromyalgia is in remission, and the RSD/CRPS is still there, but it behaves itself most of the time. My feet still ache when they get cold, or I exert myself too much. And I get pretty achy at night, but I am 31 years old, so I guess that could be normal. Considering where I've been, and how severe my symptoms could be, I'll take a few age appropriate aches and pains. I am still overly sensitive to small injuries that really shouldn't be painful, so I guess my central nervous system could work a little better but believe me, I'm not complaining. I know that another disruption could easily happen, but I feel like I have the knowledge and the ability to reverse it again.

Speaking of being 31... I just had a birthday. I have been overwhelmed with caring for my sick family (and myself) so I have yet to post my thoughts about getting older.

They are brief, but here they are:
I am proud of myself and my choices.
I believe that I have created happiness in my life, and that I deserve it.
Good for me.

Great News Everyone...

I'm sick.

No really, this is great news because I caught The World's Worst Cold from my daughter, and I didn't know it until my throat got a little scratchy.

Back in the day when my immune system was not the greatest, I got sicker/faster/longer than anyone else.

This time I was last to get it, and I'm not that sick. Here's the best part. The pain spike that always preceded and generally enhanced and lengthened illness-- the one that would send me to the bath tub 4 times a day, and to bed the rest of it since I couldn't tolerate the sensation on clothes on my skin, or even gather my thoughts enough to interact with other people through the fuzz of pain-- you know, that one? It didn't happen. Still hasn't happened.

Me and My Crackpot Ideas

I have a crazy theory.

My arms bothered me for the whole month of January. I thought wistfully back to December when my arms were peaceful and dare I say, nearly pain free, and wondered what had changed.

I wasn't even making much jewelry, so my hands were getting a nice rest. What happened?! Such is the life of some one with Chronic Pain, am I right? The insanity of searching for the cause of the latest pain flare can even get fairly amusing. So imagine how heartily I laughed when I sat down at my work bench yesterday to do a little carving and discovered an amazing idea. You see, I use a Flex Shaft-- which is a motor with a hand piece that spins various tools like a drill bit, or a bur. After a good session of carving the clay for my jewelry, my whole body is energized, for lack of a better word. I think the vibration encourages blood flow, and acts as a giant tens unit, or chord stimulator. Maybe it overwhelms my nerves with white noise, because after a solid 45 minutes I can't feel much of anything in my upper body.

My arms feel great today. It just goes to show, if you do what you love, unexpected benefits will follow.

Oh, Yoga.

I skipped yoga last week because I didn't want to worsen the pain flare. But then I decided somewhere around Wednesday, that I should have gone because the stretching and the movement might actually break the cycle instead of making it worse.

Well I went last night. The class was easier than it has been, but I'm still pretty sore. My teacher does a great job of reminding us to find our own pose, and not to worry about how bendy or intense our neighbors are. I'm pretty sure that the Relaxin (my favorite hormone name, ever) never left my body because I can bend like a noodle. It's the power poses that get me. Here's hoping I can turn the corner soon, and start feeling great again.

I left my heart...

I thought maybe I'd tell the story behind the new title picture.

The husband and I used to live in the Bay Area, so we made frequent trips to San Francisco when we didn't have anything better to do. We would ditch the car and often spent the entire day roaming some part of the city. When we first started these walk-a-paloozas, the pain in my legs got to be such a pain in the ass that I honestly considered my wheelchair options. I figured that I would only use it in place of long distance walking, but damn it I had made it without one this long- (many people with RSD/CRPS are not as lucky). So I stuck it out. Eventually, it got easier.



One of my favorite things to do in the city was chase a flock of wild parrots that lived on Telegraph Hill. The sidewalks get so steep up there that they are actually stairs. I'm assuming this is to prevent calf muscles from detaching altogether, but the endless stairs just hurt in a whole new way. I was walking up said stairs, but also planning to sit down right there on the ground in the very near future when I stumbled upon some public "art."



I now had a slightly more elegant reason to stop hiking while I snapped a picture of the steps. Even with all the gardens, bridges, and other really fancy things I took pictures of in that city, this one remains my favorite, because it was the most unexpected bit of encouragement when a girl really needed it.

Setback

I knew I shouldn't have said I was feeling better out loud.

I am a (mostly accidental) Genius

I just went to visit my hormone guru, Dr. Foster to consult about my fertility woes. Things should be looking up from here.

Anywho, I told her all about my Body Project. She cringed when I said Lyrica and Cymbalta, but I explained about the ascending and descending pain pathway theory, and that my goal was to interrupt the pain cycle. She later said that L and C are fine-- she just saves them for people in really desperate situations, and she agreed that they were a good idea. She said, "I bet the doctor you went to is giving that combination to other patients now." I said probably not, since he refuses to treat Fibromyalgia.

Dr. Foster said that by flooding my brain with neurotransmitters and then going off the drugs and plunging into withdrawal, I essentially hit the reset button on my central nervous system. While I feel better than I can ever remember, I hesitate in recommending this strategy to the faint of heart. I was highly motivated to get off the drugs so that I could get pregnant again. Otherwise, I think it would have been much more tempting to go back on the pills, just to bring the awful withdrawal symptoms to an end. I read many posts online from other people trying to beat a Cymbalta addiction, and they were all very disturbing.

I also told Dr. Foster about the supplements I took, (mainly Fibro Response by Source Naturals, Glucosamine/Chondroitin, Omega Mom, and Vitex) and she commended me for approaching my pain with an inquisitive, open mind, and for doing my "homework." She said I did a good job helping my body heal itself (even if I used scary pills to do it.)

It was a lovely visit, and hopefully my hormones will get back under control soon. A little boost of Progesterone will also help ease inflammation, so I'm looking forward to feeling even better!

The Yoga Superstars (and me)

Let me preface this entry with a Body Project Update:
All three of you might remember that I attempted to ease my neurological and muscular pain disorder by experimenting with a few gifts from BIG PHARMA. I wanted to see if I could break the pain cycle and help my body eventually heal itself. I took Lyrica and Cymbalta for about 6 months, and felt like a drug addict thanks to a multitude of side effects, but I was pain free for the most part. The RSD/CRPS symptoms in my left leg were still in full swing, but my other limbs, back, neck, and face felt fabulous.

Then I went off all of the drugs. It was awful. The HORRENDOUS withdrawal process followed by the WORSE THAN EVER pain flare made me feel like a fantastic failure.

But after about three months, it dawned on me that I was feeling better. I realized that it had been more than two weeks since I needed to take 1-3 baths everyday to cope with pain. I noticed that my energy level was creeping back up. Everyone, pain disorder or not, has bad days and I am no exception. I don't feel great everyday, but I have many, many, more good days than bad. I have been treating this tiny remission very gently, terrified that if I got crazy and walked too far (like, say, from one side of the grocery store to the other) that an unstoppable pain cycle would start all over again.

Then I went to Yoga. I was (am!) sore-- don't get me wrong. But it used too be that my sore muscles would aggravate my nerves, which would cause a burning so intense I couldn't tolerate my clothes. IT DIDN'T HAPPEN THIS TIME!!! Can you tell that I'm a little excited?

I even went back to yoga tonight. I was late, and got sandwiched between Yoga Goddesses 1 and 2 with their headstands and adept Flipping the Dog. At one point my right arm was shaking so violently under the strain of my 97th inverted pose that I had to hold it still with my other hand. But I was there. I finished the class, and I felt amazing.

Namaste.

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!

The Body Project: coda

So I thought I was done with the drug experiments since I'm trying to get pregnant and all, but in between cycles I've been taking my vitamins with gusto. This month I decided to try an immune system booster after reading about the research they're doing over at Stanford. They are using a prescription drug to boost the immune system of people with Fibromyalgia. They used to think that the cause of autoimmune disorders was an overactive immune system, but now they're wondering if it's the reverse. Considering how often I got sick (and stayed sick) I never thought it made sense.

I popped over to whole foods on Tuesday (in order to secure the 15% discount on vitamins, because I'm broke) and picked up a supplement for immunity support. It's only been a few days, and it may all be just a big coincidence, but I feel better today than I have in months. I have lots of energy, the pain feels manageable, AND I'm not dealing with all of the nasty side effects from the Lyrica and Cymbalta (hello extra 15 lbs... welcome to my hips! Please, stay a while!!)


Still taking the (Source Naturals) Fibro-Response and LOVING IT!
Whole Food's brand Immune Support and Glucosamine/Chondroitin

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.

Peace II

I have vowed to single-handedly sell out The Depot on August 15th 2009 when Xavier Rudd will once again grace Salt Lake with his presence. I want to make sure that he comes back every year! We first stumbled upon his music at a show in San Francisco. When we moved back home, I was worried that we would never see him again.

This is a story from my book about traveling to Denver a few years ago just to see him one more time. It goes like this.

Peace, Part II

I had been in a snit for the previous month or two or six. Kris and I were supposed to climb Mt. Whitney with friends. We had made all of the plans long before we knew about the baby, but in a flash my whole life was changed forever and I felt a little picked on. I couldn't go be with my friends and see a little more of the world. My life felt small. My tummy felt sick. My future felt lonely- Kris was still planning to go.
I suggested a trip to Denver to see one of my favorite musicians- Xavier Rudd. He was playing a show on our wedding anniversary, and Salt Lake wasn't on his tour schedule at all, so Denver was our only chance to see him. He's amazing. He plays the guitar, the didgeridoo, and a slew of drums and other noisy things all at the same time. I sent Kris a text about the show. "We should save our money" was the message I received back. Note to self: Don't discuss things in text messages when they are really important to me.
I let it stew in my head for a few weeks. I didn't know how to explain my feelings without sounding crazy. But the thoughts sat around in my pregnancy-enhanced brain for so long that they got huge and dripping like giant anime monsters from the sea which came pouring out of my mouth one night.
"You would rather go spend precious vacation days from work with random people than spend them with me! You would rather spend money on that, but there's a trip to Denver we could go on together and you say we have to save money!" Of course, this is what I meant to say, but when I get upset I cry. Sobs interrupted my brilliant argument. Kris and I hadn't had a fight for a good year or more so we were due. There was yelling, more crying and in the end Kris informed me that I was crazy. Wasn't that obvious, I wondered. Did he not notice that I was pregnant? I thought I had a free pass for crazy.
A few weeks later on Mother's Day, I got plane tickets to Denver to see Xavier without a single mention of my temper tantrum. On the day of the flight I woke up to terrible pain in my feet. Most days I had been feeling like my body was being held together with used cellophane tape covered in paper fuzzies. I tried to convince myself that I was strong-- wrapped up in duct tape, or at least masking tape, but I knew it was going to be a bad day.
I had been trying not to think about the pain complicating my pregnancy. So far it hadn't been too bad, but I felt as if I were losing my balance on the edge of a cliff. What was it going to be like tomorrow? Next month? There could be a genetic predisposition to chronic uncontrollable pain, so the biggest question of all is: will my baby ever be in pain like this? No one could tell me answers to any of my questions. I feel selfish for wanting to have my own children knowing they could end up like me. These fears still swirl through my head on a daily basis no matter how hard I try not to think about them.
I bundled my crazy thoughts, suppressed them the best I could, and got out of bed. We had to be to the airport soon, and my less than stellar walking was only going to slow us down.
As we took off on our flight my feet just got worse. They became more and more swollen and tender as the day went on. We were trying to see the sights in Denver before the show that night, so we went to the art museum. It was huge and amazing. We walked one floor of it. Kris walked, and I hobbled from bench to bench craning my neck to see the art without standing. Each step to the next bench was like walking on five inch red-hot nails. They pierced clean through my feet and sent pain screaming up my legs. It was too much. I wanted to quit. I wanted to go home, but I didn't go all that way to sit in hotel room. I knew I had to make a choice that I had been putting off for years.
I went by myself to the customer service desk trying to build up the courage to ask for a wheel chair. The line was too long and my pride was too strong. It took a second trip with Kris by my side. When I asked him to go with me, he reflexively said, "you don't need a wheelchair- you're so tough!" But he studied my face for a moment and then helped over to the customer service.
The man brought out an old crooked chair with a broken left foot rest. My heart sank as I inched my way into the chair. The brown vinyl folds swallowed my body, and my self respect. It had been 19 years since the accident and 17 years of walking on my own despite any challenge. All brought to a whimpering vinyl-clad halt.
Kris pushed me from wall to wall through the galleries. We struggled with doors and corners but eventually we got it down. People stared. I made a mental note to call my best friend, Bree who has been paralyzed for about 10 years. She wants to tape a sign to her chair that says "Pictures with gimp $3.00" to stop people from staring at her.
I made it through the museum with a little less pride than when I started, but I got to see all of the lovely art all the way up to the top floor. I was still worried about the concert though. I knew I couldn't stand for hours at the show no matter how much the rest in the wheelchair had helped. As the start of the concert drew near, I felt heavy, like a weight bringing Kris down and anyone near me. When we got there, the club was packed. We figured if we had to stand- we might as well stand in front so we elbowed our way to the stage and waited.
I started my search for a place to sit. I do it without thought. When there isn't a bench handy, I seek out corners where I won't get stepped on in shopping malls, or empty displays in grocery stores. I always envy the old people who have a chair built right into their walkers. I spied a cinder block by the stairs and took a seat.
Mr. Security said I couldn't sit there, I was blocking the stairs. Kris was quick to my defense, "she's pregnant man, give her a break." I pointed to my belly swollen with 7 months of baby. To our surprise Mr. security said, "Why don't you sit over there then?" and pointed to the crowd barrier in front of the stage. I swear angels were singing and a spotlight from heaven shone down on the little bench built right on the front of the crowd barrier. I was so embarrassed, but I couldn't pass up the best seat in the house. I took my seat right in front of the stage and tried to blend in.

Soon Xavier walked out with bare, tattooed feet, and crazy surfer hair that looked fresh from the oceans of his native Australia. He greeted the crowd and soaked in our good will before he sat down. He gave me the warmest smile I have ever seen.
He took a seat behind about 20 different drums, a kick box, a keyboard, and three didgeridoos. They were suspended around him in some sort of frame so that he could play them all at the same time. He picked up his guitar, started a rhythm on the drums, and blew out the first low, shaking notes on the didge. Baby girl started kicking harder than I had ever felt her before.
Song after song we danced together. The stress and indignity of my day vanished as I bounced in my seat with my hands on my belly. Baby girl twisted and kicked almost in rhythm.
A woman dancing near me leanded over to say that Kris and I were beautiful. She admired me for taking my baby out to hear the music and take in the energy of the crowd. "Live your life," she said and kissed my cheek. It was surreal. Live my life indeed.
At the end of the set Xavier walked to the edge of the stage, knelt down and reached out for my belly. He touched my tummy, and I touched his hands. I wanted to say come to Utah next time, but I was speechless. When he came back for an encore, he dedicated the song to me. "This is for the girl with beautiful healthy pregnant cheeks.

Body Project: Epilogue

Oh my, I have had a bad week. I knew it was coming though, and it is my own fault. I speak, of course, of withdrawal. My first taste of Cymbalta withdrawal came when I ran out of pills a few months ago, and I didn't make it to my doctor's office to pick up more before they closed on a Thursday. I thought it wouldn't matter if I missed just one dose, and then ran in to the doctor on Friday morning.

I woke up in a cold sweat. My jammies and sheets were soaked and I was freezing. I couldn't see, but this is normal for me in the morning. But even after I put in my contacts I still couldn't see a thing. It was like my brain and my eyes were failing to communicate. Every time I moved it felt like I was swimming in Jell-o and leaving trails of sparkling tracers in my path. My body was buzzing with an electrical charge, and waves of simultaneous nausea and pleasure were fogging my brain into near-inactivity. The best part is that with the flood of Serotonin and Norepinephrine I wasn't feeling an ounce of pain, however I was way too sick to appreciate it.

All of this would have been fine if I could have just slept the day away, except that I had to take care of my child and drive myself to the doctor. I don't know what I was thinking when I got in my car! I clearly wasn't thinking straight, but I felt compelled to go and get another dose of Cymbalta just to end the withdrawal circus. I drove as carefully as I could, and eventually I made it. I dragged myself and my squirmy baby to the top floor office (who puts a pain clinic on the third floor?!) only to find the lights off and the door locked. That's right. I had forgotten that the office was closed on Fridays. I could not figure out what I was supposed to do as I pondered the idea of spending the entire weekend in such a state.

I fumbled through the rest of my day somehow, and was attempting to attend my friend's birthday party, and pretend I wasn't all strung out when my sister called me on the phone.

"Why don't you just call the after-hours number?" she said.

Of course that was the right idea, and of course I hadn't thought of it. It had required immense amounts of concentration just to put my sandals on.

So there I was, begging the inept PA to call in a prescription for three pills. I would have to pay out of pocket, since he had not completed my Prior Authorization forms for the insurance yet, but by that point I was willing to pay, or do anything for another dose. I have never felt more like a junkie.

After handing over more than $6 per pill, I finally took another dose and fell asleep. All was right with the world again the next morning.

A week later I stepped down to half the dose, and got to spend another day at the withdrawal circus, but it was not as bad.

Back to the present: I have been going off all of my pills one at a time as I prepare for the Baby Project. Dropping the magic Fibro-Response Vitamin was the hardest, because without it, the Lyrica doesn't work at all (the vitamin by itself does not work either. There must be something about the combination.)

Being in pain again after experiencing relief for the first time in 20 years has been cruel. Since I was only 10 years old when the pain started I was actually able to form my adult life around the pain. I was not an athlete forced to give up my passions. I learned how to be a college student with the pain, instead of feeling ambushed in the middle of my studies by sudden illness. I rarely felt like I had lost anything to pain, but rather that I lived my life in spite of it. I would never turn down an invitation or a challenge because otherwise, I would never get to do anything. I felt like I had overcome so much and was able to live a rich life.

Then the pain went away most of the time. I could act without thinking about the pain consequences I would face later that night. I had boundless energy-- even enough to enjoy evenings out with friends and family. I had NEVER realized how easy life is without pain. Now that the pain is back, I have lost my ability to cope with it. When I try to go out in the evenings with friends, I barely have the energy to speak anymore. I have finally realized how much of my life the pain has taken from me, because I got to live without it for 8 weeks.

I have been left to wonder who I am. Am I the quiet, withdrawn person I have been for most of my life... that is when I am not making a Herculean effort to fake enthusiasm. Or am I really the girl who was funny, charming, and brimming with energy? Was that dose of personality just a side effect of medication, or was it my true self finally able to surface from the murky ocean of pain? But enough about my hyperbole-enriched identity crisis...

In case you are new around here, I have to stop all of my medication because I am planning to get pregnant again soon, and I obviously can't take them. Kicking the Lyrica was a snap-- I didn't even notice it was gone. I left the Cymbalta for last. The Cybalta alone was not providing any relief at all. The pain and my mood were both terrible. I think that means that my energy level and mood have more to to do with pain level than a separate case of depression. I have been excited to get it out of my system since it wasn't helping, and I really don't like putting useless chemicals in my body. But I have also been dreading the withdrawal.

It has been really bad, but I think I'm almost done with it. I have been perusing google lately, and have found several sad stories of people who desperately want to stop taking Cymbalta, but cannot face the withdrawal. They feel trapped, and like me, they had no idea it would happen before they started taking it. I am going to contact the FDA about my experience. If they get enough complaints, they will be forced to investigate. Perhaps Lilly (Big Pharma) will be forced to tell doctors about the severe withdrawal symptoms, so patients can make an informed choice before taking the drug.

I have put a lot of thought into adoption or using a surrogate so I could continue my medication, but I simply do not have enough money. I think it is cruel that the system has made it so hard for people who cannot have their own children to adopt, when there are lots of babies that need homes.

If I can get pregnant quickly, then I will hopefully be able to enjoy the remission of RSD and FMS that often comes with pregnancy. The theory is that they are both autoimmune disorders. Since the immune system is suppressed during pregnancy so that the body will not reject the baby, the symptoms are also suppressed. (This is why the RA drug Enbrel might help RSD, but I have yet to find a doctor who will prescribe it for me. I think I will make that my next body project after the baby.)

I hope that I can find an affordable source of donated breast milk, so that I could go back on the meds right after the birth. After all, I can't imagine taking care of a toddler, an infant, and dealing with the pain. But that is a bridge I will have to cross later. I am confident that I will get to the other side with flying colors because that's how I roll.

I know it will all be worth it.

A Rather Lengthy Essay That Won't Be Interesting to Anyone Without Chronic Pain

Well kids, I have reached the end of my six month body project. I'm wondering if I should extend it a little longer and see if I could soak up even more benefit, but I'm anxious to start on the baby project ;)

I am so excited to say that, at times, I experience 100% relief from my symptoms. I'm not claiming to have cured Fibromyalgia, because if I miss a dose of medication, push myself too hard, or lose precious sleep, the pain can be overwhelming. I was hoping that the more time I spent pain free would allow my brain to repair my natural pain defense system which has been abused by so many years of RSD pain in my foot. In the last week or so I have noticed that I can go longer between doses, and I can take less and still fell great. So perhaps it is working. If I could decrease my overall amount of of pain, it would ultimately make my pregnancy more comfortable since I can't take this cocktail of pills while knocked up.

I'm hoping that this little post will find it's way to the front page of google, so that the next troubled soul searching for answers won't have to sort through as much crap as I did. There are a lot of misconceptions about Fibro. I admit that I was guilty of thinking it was just a diagnosis for whiny women, and that I am still embarrassed to tell people that I have it, because I know what they might be thinking. Caution, the feminist soap box is about to come out of storage: nine out ten people with Fibromyalgia are women. To me, that clearly means that our hormones are involved, but for others (including the male-dominated medical profession) it apparently means that women are crazy anyway so this pain they complain about can't be real. I realize that there are a few ladies out there giving the rest of us a bad name. One afternoon at the bead store, I was lucky enough to overhear the following conversation.

Bessie: (shouts across the entire store) So my son asked me if I could watch my grandson after school. Don't get me wrong, I love the kid- but I says 'I'm not doing it unless you pay me. My time ain't free.'

Bertha: (from the other side of the store) That's right!

Bessie: It's not like I quit my job for fun. I've got the Fibormyalgia you know.

If I hadn't been there on business trying to match the color of bridesmaids dresses for one of my brides, I would have bolted for the door immediately in hopes of easing my turning tummy.

I don't know why I feel it's somehow different to discuss my pain disorder with entire blogging community. Probably because you all have chosen to read my ramblings. My purpose in all this really is to help other people feel better, so on to the results of my Body Project.

First a brief description of the problem, as far as I understand it. It's all about dopamine and endorphins, which regulate the body's response to stress or pain. Pain messages are chemical signals which travel up the spine and pool at the "pain gate" until there are enough to open the gate and travel to the brain. The brain then identifies the problem and responds by moving your hand away from a hot iron, or whatever the source of pain is. Then it releases endorphins to close the pain gate and block the signals so that the pain is decreased, or no longer felt at all. Dopamine is also released which increases sensations of pleasure and well-being.

But if the source of the pain or stress is ongoing, the system breaks down and levels of endorphins and dopamine become too low. The "pain gate" gets stuck open. Now pain messages flow freely to the brain. The body starts to send more chemical messages to get the brain to respond, so pain stimulus like a stubbed toe hurts way more than it should. This is called central sensitization. Researchers have actually convinced people to get spinal taps in the name of science. They measured lowered levels of neurotransmitters like dopamine in the spines of people with Fibromyalgia, as compared to people without it.

Dopamine is supposed to be replenished during sleep, so if the source of stress or pain interrupts sleep, then it becomes a self-perpetuating cycle. You can even sleep through the night without waking, but a body dealing with too much stress or pain never enters into truly restorative sleep.

Researchers have also studied oxygen levels in the muscles of people with Fibromyalgia and found that the blood is not replenishing the muscles with oxygen during exertion, resulting in pain. Chronically sore muscles bombard the brain with pain messages... and now we're back to the beginning of this mini science lesson.

There are two drugs normally used for Parkinson's disease which raise dopamine levels, but they are not FDA approved for Fibromyalgia. So finding a doctor who will prescribe them off label, or an insurance company to pay for them is difficult. For those determined to fight for them, the drugs are called Mirapex, and Requip. I've been told that they have terrible side-effects, and most people do not tolerate them well.

Perhaps as this brand new research on the connection between Fibromyalgia and dopamine is more widely accepted, there will be a better solution. But until then I have combed the internet and found a combination of drugs which increases other neurotransmitters in my brain, giving me 100% relief at times.

Here's a list of what I take:
Lyrica: (prescription) This is an anticonvulsant, and the first drug to be FDA approved to treat Fibromyalgia. It slows pain messages to the brain so that it can respond appropriately and doesn't receive too many at once. I take 50mg 2-3 times daily. One in the morning, one at night, and sometimes in the afternoon depending on how I feel.

Cymbalta: (prescription) This is a SSNRI (Selective Serotonin Norepinephrine Reuptake Inhibitor). It is the second drug to receive FDA approval for Fibro treatment. An SSNRI basically keeps the pain-fighting neurotransmitters in the brain longer so they are more readily available to close the pain gate. I take one 30mg pill at night. When I moved up to 60mg, I lost my sense of taste, and was too stoned to drive.

Both of these drugs help me sleep better, so that my brain naturally replenishes dopamine.

Flexeril: (prescription) It is a muscle relaxant which has helped me immensely. Less pain in the muscles means the fewer pain signal to deal with.

Ultracet: (prescription) This is a lower dose of Ultram plus tylenol. I threw up every time I took regular old Ultram, but I can take Ultracet with no problems. It is very effective on break through pain. But I only take it occasionally.

Now here's the important part: the vitamins. There are a few theories out there that part of the initial problem which eventually breaks down the dopamine/pain response system could be nutritional. I read about so many different supplements which are supposed to be helpful, and I was willing to try anything, so I ended up taking two or three handfuls of pills three times a day. One day at the vitamin store I found a supplement by Source Naturals called Fibro Response. Since it had Fibro in the name I picked it up and read the label. It had all the different supplements I was taking separately, all in one! In particular Magnesium, MSM, and the B vitamins are very helpful for energy, muscle and nerve pain. It also has co-enzyme Q10 and other naturally dopaminergenic supplements (meaning they increase dopamine in the brain). I didn't realize how much it helped me until I ran out of them on a Thursday. They are not cheap so I figured I would wait until Tuesday when vitamins are 15% off at Whole Foods! By Saturday I was really in pain again. The Lyrica, Cymbalta etc. were no longer working without the vitamins. As I move from the Body Project to the Baby Project I will have to drop the scary prescriptions. I'm excited to see if the vitamins alone will continue to relieve my symptoms.

Now that I have the pain under control, I am able to do light exercise which also increases dopamine naturally.

I take a few other things which may or may not be relevant to other people. I take Glucosamine/Chondroitin for neck and shoulder joint pain.

I also mentioned my theory that estrogen must be involved, since most of the people with Fibro are women. I had a raging case of estrogen dominance which cause a slew of problems. I fixed it with progesterone hormone therapy, and I maintain level hormones with Vitex, which has been taken by women for eons to regulate their cycles.

I wish I could give out a prize to anyone who finished reading this! It ended up being much longer than I intended. If anyone is moved to try this combination of pills, please let me know if it works for you, or if you have improved upon it somehow.

I simply must go now because my daughter is pouring a substance which sounds suspiciously like rice all over the kitchen floor, and an impatient bride in Chicago is expecting 9 bridesmaids necklaces to be finished today.

http://www.sourcenaturals.com/products/GP1116/

artificial peace

I took this photo in the Presidio in San Francisco while I waited for Kris to finish the Nuts Across the Bay 12K in 2005.


It's like there's a politically inspired cease fire between my peripheral nervous system and my brain. Both sides are still angry, but they have been forced to get along by your friends and mine: Lyrica and Cymbalta. This duo is potent. I know that the Cybalta is supposed to take up to six weeks to fully work, and I'm still building up my dose, but I can already feel a change. Namely-- blithering intoxication. This would not be a problem if I didn't have a darling child to care for. I would love to drift into this drug induced stupor, but then who would burn, I mean cook the fries and chicken nuggets?

Besides my inability to follow conversations or drive my car, there is also a lovely numb sensation most of the time. That is unless I think about the fact that I feel numb. Then it subsides and the pain comes back to center or my attention. So I have to think about not thinking about the pain. If that makes sense.

Apparently neither my nerves nor brain seems to want to let go of it's nasty inflated pain signals. I'm pretty sure the drugs just help distract me from it all so that the fun numbness can invade my consciousness. This false sense of relief leaves me feeling nervous that at any moment the pain could come charging over it's borders, ending the cease fire for good.

It's official

Ever since I got an official fibromyalgia diagnosis, I have been lost in thought over the implications. Before I started to research it, I had a pretty bad impression of it-- just like most of the people I know.

My darling neighbor occasionally hosts his nephew, who travels to Salk Lake to see a specialist. My neighbor whispered under his breath that his nephew has... (with a quick scan of the street) "the fibromyalgia." He seemed embarrassed to tell me about it. I almost cried when the rhuematologist said, "FMS is a good fit for your symptoms." Not exactly a confidence-boosting delivery of the big news. But I just didn't know how to feel about suddenly being one of the crowd who has to explain that, "it's a real disease, no-- really it is."

People in pain have always faced skepticism (I am already intimately aware of that). Then add to that the fact that most of the people with this disorder are women, and our male doctors calling us all hysterical rather than admit that they don't understand or know how to treat the pain makes a lot more sense.

They say it's just a label, but now that I have the official fibro diagnosis, two things in my life have improved already. Medication is one. My Lyrica experiment is going shockingly well. I would say that I have had an 80% improvement in overall pain. I never thought that would happen. I am about to start Cymbalta this evening, which was only recently approved by the FDA to treat FMS. I watched a webinare (which is apparently a word now) and it explained with 8x10 color glossy picture with circles and arrows on the back of each one (not really) about ascending and descending pain signals. When I told my doctor that Lyrica works on ascending pain and Cymbalta works on descending pain messages, he said after a pregnant pause, "you're right! Those will work well together." So an understanding of the mechanisms of this pain, as well as access to new and exciting medication is my first benefit.

Allowing myself to be exhausted is the second. For 19 years and 4 months I have gone above and beyond to prove that I am fine! I may have pain, but I am fine, and I can do anything and everything the rest of you can!

But lately I have allowed myself to recognize that sometimes I am overwhelmed with exhaustion. When that happens I sit down. This is new for me. I think I like it. Thank god for hulu.

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.