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.

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 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.

The Time I Was Suspected of Being a Battered Woman

If you've ever met my husband, I'm sure you have just burst into peels of laughter, but for those who haven't had the pleasure of meeting him, Lander is the sweetest man, ever.

This all starts with a gmail chat with said sweetest man ever. I was busy doing this new work-at-home mom thing, attending to jewelry orders, dreaming up marketing schemes, and taking care of Rosie when Lander says, "I'm coming home. I don't feel well."

Wondering how I could check on the status of Hell and their current level of rock solid ice, I tried to be nonchalant with, "really? This is new," I continued. Lander comes from a long line of proud Fresians in the Netherlands, including a Grandmother who waggled her tongue at occupying German Soldiers and sneaked food to hiding Jews. His is not a race of people commonly known to let a little sickness hold them down- you know, finger in the dykes, holding back the ocean and all that.

When Lander arrived home he was actually a shade of green I didn't think possible for the human face, and quickly set about puking for about 12 hours straight. Deep heaving puke sessions colored our night, and made getting out of bed the next morning challenging. But he did- and then he went back to work. I was dumb-founded. I would have stayed in bed for the next three days if I could get away with it. I come from a shifty stock of people, apparently.

In truth we were wondering if his illness was just the pork chop we got on special the night before, or a virus that was rumored to be going around his workplace. Either way, we thought for sure that I would start turning green soon enough, and that he would need to come home and care for the baby in my place.

A few days went by and I wasn't sick yet, but Lander lost his voice due to the stomach acid bath he gave his vocal cords. He sent me a text from work, when all he had left was a whisper, and asked me to finally make him a doctor appointment.

I was busy trying to get myself and Rosie ready to go to the doctor. I was going to meet Lander there and talk for him until I remembered that I still hadn't found my car keys. Rosie really likes to play with them, and no matter where I put them she always seems to find them and turn on the panic alarm. I have looked in all of her places she likes to put things, but my keys are no where to be found. I think she threw them away. Kris was rushing home to pick us up before his appointment. I went to carry the vacuum down the stairs to appear like I was a gifted housewife and could keep that damn house clean for once, when as if in slow motion I found myself suspended in time and space over the stairs. I thought back a few moments and remembered my silky sock slipping off the edge of our narrow Sugar House stairs. Perhaps people's feet were smaller in the 50s so they didn't need deeper stairs, but at any rate, I concluded that I was once again falling down the stairs and there was nothing I could do about it, so I just waited to land. And I did, with my left arm somehow underneath my body. It really hurt. I poked around and tried to move my fingers and all that, wondering if it was broken since the pain was crushing my soul a little. My body does not respond appropriately to pain stimulus, since my central nervous system tends to be a little overly-dramatic. When I started to involuntarily cry a little, Rosie climbed up the stairs to see what I was doing. Then she sat in my lap and hugged me. It was really cute, even if I had to cry to get my daughter to hug me.

Since we were going to the doctor anyway, I decided I would just ask him to poke my arm a little and tell me if I needed an x-ray. My bleeping insurance co-pay recently doubled, so I really didn't want to pay it twice that evening.

After hearing the story of Lander's illness the doctor swiftly decided it was e coli. "And who was responsible for the undercooked meat?" the doctor asked, looking at me and the ice pack on my arm.

"No- it was totally him. I don't cook," I explained.

With a few more jokes at Lander's expense, the doctor was about to let us go. "Can I just bother you for one more minute?" I asked. "Right before we came I fell down the stairs and hurt my arm. I'm sort of wondering if it's broken." I showed him the cuts and bruises already forming across my ulnar bone.

"You can just sign in and we'll look at it," he offered.

"My co-pay is really high. Please?" He started to poke my arm, and I could barley stand to let him touch it.

"They call this a night stick fracture..." and then he held his arms in front of his face in a mock defensive stance. "If you want to come back tomorrow, we'll take an x-ray, but I don't think it's broken."

It occurred to me that he might have been trying to get me alone so I could tell him what really happened to my arm. He continued in a slightly accusing voice, "really you can come back tomorrow." He meant, I could come back tomorrow, alone. I guess I did seem suspicious. I wouldn't let him make a record, and the injury on my arm was not a logical result of falling down the stairs. I was just being cheap, but I think some doctors tend to think the worst of people. He made me feel guilty even though I was not lying about the source of my injury.

***

The next day I found myself with my head out the car door, puking on the side of I-80. An ill-advised hot dog hastily eaten at a down town movie theater on the opening night of the Sundance Film Festival is probably to blame. But it seems too coincidental that Lander and I would have both gotten food poisoning within days of each other. Here's hoping that it's true, and we don't have a puking baby to look forward to in a few days.

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.