So Twinks is back at school, full time. No more homebound; every morning she takes her roller-backpack and she disappears into the morass of swirling sixth-graders.
A little bit of my heart disappears with her every morning now; I had gotten used to her being *here* - at home with me - all the time. I must confess that I liked it; we had created a comfortable routine, just the three of us. Twinks would get to spend several hours every day with The Wrench, instead of just seeing him for about 45 minutes in the morning. I would leave them to their little morning ritual; The Wrench would get up early, just to spend time with Twinks. They would sit together to do homework, or if there was no homework, I would hear his voice, deep and rumbling down the hallway, blended with her sweet soprano as they puttered about together, doing everything from folding origami to folding laundry.
Now that has changed. Just in time for the last month of school, Twinks is back. She even got a standing ovation on her first full day back at school! She was really amazed, and touched that her friends were so happy to see her.
I, on the other hand, feel dazed and confused. (Stop it. Right now. I know what you are thinking: "So, what else is new? Thim is 'dazed and confused'. So? What else you got?") Well, when you quit laughing your collective asses off, consider this...
...I have essentially hit a brick wall. At full speed.
The Wrench and I have been so focused - fully, completely focused - on finding out what was wrong with The Twinkster that it was, well everything. When he wasn't at work, whenever I could find a free moment, we would be on the Internet, searching, learning, trying to figure it out. It was more than just a mystery to solve, it was our daughter, fading away before our very eyes, and we felt that we had to keep going - we had to keep looking for the answer. It was intense, all-consuming. We ate it, drank it, slept it, lived it, 24/7.
Then, suddenly one day, there it is. The answer is revealed, albeit in a parking garage, and you find that you have gone from 60 to zero in a heartbeat.
You have hit the wall.
Now, what do you do next?
Well?
It's a bit of a shock to the system. Nearly three weeks later, and I still sit in front of the computer, thinking that there must be *something* that I need to be checking on. I feel a bit odd and disconnected from reality; it's difficult to just let go of that sense of urgency. I know that the crisis is past, but the adrenaline is still pumping.
So, to occupy myself I did a bit of research. Good news: Fibromyalgia can be terrible, (we already know that) but if managed correctly, she'll be fine (Irony: she'll probably be "healthier" than all of the rest of us combined if she follows the recommended regime) Nearly three weeks in, and The Wrench and I can't believe what we are seeing. Twinks is a whole new kid: It's like a miracle, sponsored by the major pharmaceutical manufacturers of America. "Better living through drugs".
But, I'm still back at that wall. I'm not exactly certain what I'm supposed to do next.
We have a diagnosis.
We have a "treatment plan" (God, I hate that phrase)
We have prescription drugs.
We have our kid again - nearly completely pain free, and happy to be back at school.
Now I guess we need a "life plan".
Or, maybe I just need a vacation.
Sunday, April 30, 2006
Friday, April 21, 2006
The last specialist standing...
So, when last I posted, we still had one more specialist to go see.
One last appointment, one last time to drag those MRI films to yet another doctor's office. One last time to fill out the endless stack of paperwork. One last time to sit perched on an uncomfortable chair, in a bland room, while Twinks squirmed on a hard exam table.
I realize that in the future, there will inevitably be another new doctor to go see. That one of us - whether it is Twinks, The Wrench, or myself - will need to see a new physician. There will be the paperwork then, the unhappy dance that all new patients do with the new doctor, trying to find out if you "fit" into that practice, if that office is going to be a comfortable place for you to spend such important hours of your life. But on this day, just a bit past one week ago, we already had a working diagnosis; the New Rheumatologist had said "fibromyalgia", and the combination of Medication A and Medication B had already begun to work. Our sweet, shining girl was coming back to us... hour by hour, day by day.
So, it was a bit of curiosity that we were there to begin with. However, The Big Cheese Doctor down at Hospital City had asked us specifically to see the New Neurologist, and I figured it couldn't hurt to go ahead and make what would essentially be a "courtesy call", just to set Big Cheese Doctor's mind at ease.
We wandered around the building, searching for an office that didn't exist (because I had remembered the office number of the New Rheumatologist, who is in a building clear across the Greater Metro, and NOT the New Neurologist. Stress. Kills. Brain. Cells.) and so we wound up being just a few minutes late. No harm done, however, because apparently the New Neurologist was running late anyway. We went through the usual routine (co-pay, clipboard with more forms, passing the MRI films through the window) and sat down in a clever little waiting room that had been decorated like it was a jungle. All the way down to little chairs carved to look like animals, and elaborate murals on the walls.
There was a little less paperwork than normal this time; mostly because when I had called to make the appointment, New Neurologist's "Patient Manager" had interviewed me for nearly 30 minutes on the phone. All of that information was here, neatly typed up, and I only had to verify this, which included a list of all of the doctors we had seen. This doctor also had a policy of reviewing the case prior to accepting an appointment for a patient, although the Patient Manager explained that with the referral coming straight from The Big Cheese at Hospital City, that was a mere formality.
I started to fill out the remaining paperwork, when a Nurse Person opened the door, and motioned us back. Unlike the Wee Cheerful Girl at the New Rheumatologist, the Nurse Person was almost entirely devoid of personality. Her scrubs were animal-themed, which matched the rooms that we passed as we went down the hallway. Her hair was caught back in a cute little "scrunchy", and she was pretty enough, but she moved woodenly, as though on auto-pilot. Nurse Person showed us into another jungle-themed room; it was small, but it had a big wiggly yellow snake inlaid into the bright green linoleum floor, a huge silhouette of a tree fastened to one wall that doubled as a yardstick to measure the height of the patients, and even a little bamboo and grass valance over the window that completed the whole decorating scheme. Everything was clean, and bright, and as I finished the paperwork, Twinks and I chatted about how the artist who created the snake in the linoleum could have made the inlay fit so perfectly.
New Neurologist bounded into the room like a giant friendly puppy, with a Resident trailing him more slowly. We shake hands all around, and just as I sense we are about to begin... Nurse Person taps on the doorframe; Resident has phone call. Resident leaves, mumbling apologies to New Neurologist.
And then a funny thing happened. New Neurologist sits on the little swivel stool, twirls all the way around, and says "Boy! Am I glad HE'S gone! Now we can have some fun!"
Twinks, of course, immediately starts laughing; between the bad Groucho Marx imitation and the fact that dour-faced Resident is gone, the atmosphere in the room is light and easy. The doctor turns toward me, and in one of the few serious moments we will have during the entire visit, asks me why exactly we are there? I explain about The Big Cheese, and The New Rheumatologist, and how we have a diagnosis, but we want to make sure that nothing is overlooked. He nods, winks, and then he swings back toward Twinks, who is sitting idly on the exam table, swinging her legs. He catches her feet, knocks on the braces that run up the back of her legs, and starts with the jokes.
"Knock Knock"
Who's there?
"lettuce"
Lettuce who?
"Lettuce get going, here kid! Get those shoes and braces off!"
For the next 30 minutes, he joked, laughed and smiled as he did the standard neurological exam that we were already familiar with. He paused only once or twice to ask me questions; most of the time he worked directly with Twinks, all of the time with a sense of humor that was razor-sharp and lightning-fast. He threw puns at Twinks rapid-fire, and she caught them all, and zinged him with a few of her own; I only wish I had a transcript of their exchange! He would throw back his head and laugh - full, real laughter - whenever she would get one over on him.
Finally he motioned to Twinks to scoot over on the exam table. He pulled up next to her, and began to draw on the paper that covers the table.
"This" he said, motioning towards a straight line he had drawn, "this is like your pain. It started waaaaaaay over here, a long time ago when you were born, right?" She nodded. "OK", he said. "So, here's the thing. Your whole life, the pain was pretty much like this" and here he pointed to the line that was parallel to the edge of the table, "and then, a couple of years ago, it started to be like this" and here he spiked the end of the line upwards, until it went nearly off the opposite side of the paper. "Am I RIGHT?" he said. Twinks nodded, not sure where he was going with the diagram. He looked up at Twinks "Actually," he said "I'm on your LEFT! Your LEFT! Get it?" more laughter, then "So, here" he pointed to the place where the line begins to curve sharply upwards "is where the fibromyalgia began. And here" he pointed to Twinks head "is where we will conquer it".
He told her then that neurologically speaking, as far as he could tell (and he pointed out to her that he was, after all, an alleged expert on such things) there was nothing wrong with her. He said that there was nothing to see on the MRI, except "bones and junk like that" but nothing "bad, icky or gross!" Then, he told her that because she had been in pain so long, and because her pain had gotten worse with the fibromyalgia, her brain had forgotten what it felt like to not be in pain. In other words, until we had started Medication A and Medication B, her central nervous system was full-out overloaded with pain. It would have been almost impossible for her to stop the pain any other way, without some kind of help, like medication.
Then, there was a moment that completely surprised me. He turned swiftly to me, and said sotto voice "She's not depressed, you know. She was in pain, she wasn't depressed." His voice became louder, and he said "Have you ever seen a marathon runner? They always look terrible, you know! Like they are about to CROAK! The way they can run those marathons is because their brains produce all of these really great chemicals that help stop the pain, and help keep them going." He paused, then "You just need to convince your brain to get back into the endorphin and serotonin business!"
He explained (in between the giggles and a few more bad jokes) that while he can't do anything to make the pain go completely away, that Twinks herself could "practice" her pain away. That by using simple visualization techniques, she could help her brain get ready for success by mentally rehearsing having a whole day without pain. He also told her that she was going to have to be like an athlete, or an actor, who uses visualization to create a "winning performance". The difference is that for her, winning is making it through the day without pain.
After a few more jokes (and a really, really bad imitation of Popeye the Sailor Man) he stood up. He asked Twinks if her mother always laughed this much when she went to the doctor's office. Twinks merrily replied "Oh no! Only here!" which caused New Neurologist to laugh heartily again. He told us that he had really enjoyed meeting us, and that he was very glad to see that we had both retained our sense of humor through everything. I replied that it was either find the laughter or lose our minds, so we did both.
He offered his hand to me then, as if to shake hands again, then withdrew it just as I reached out. He bobbed his head instead in an awkward bow, then as soon as I withdrew my hand, he stuck his out again. We repeated the silliness once more, to the increasing laughter of all three of us. "Go away!" he cried, passing his hand over his forehead in mock drama "Go away! I have no need of you further!"
Then, he was gone, out the door. The Resident never came back; it was just as well. We saw him as we were leaving, in the hallway... he looked dazed and confused. Poor kid.
=========================
If laughter really is the best medicine, the New Neurologist is the best doctor in the world.
=========================
So, now we are done, at least for a couple of weeks, with the doctors.
We'll have to go back to the Pediatrician and the New Rheumatologist for follow-up visits, but we don't need the New Neurologist, or Physical Therapy, or most notably, The Quack.
We'll be moving forward again. Twinks made it through two full days at school this week; a huge triumph, considering that she hadn't gone to school full-time since last October, and hadn't been to school at all since January. Already the pace and tempo of our lives have changed; The Wrench and I are beginning to look like humans again, now that we are all getting some sleep.
We did it. We made it through. We made it to the last specialist, and the prize is that our Twinkie is getting her life back.
One last appointment, one last time to drag those MRI films to yet another doctor's office. One last time to fill out the endless stack of paperwork. One last time to sit perched on an uncomfortable chair, in a bland room, while Twinks squirmed on a hard exam table.
I realize that in the future, there will inevitably be another new doctor to go see. That one of us - whether it is Twinks, The Wrench, or myself - will need to see a new physician. There will be the paperwork then, the unhappy dance that all new patients do with the new doctor, trying to find out if you "fit" into that practice, if that office is going to be a comfortable place for you to spend such important hours of your life. But on this day, just a bit past one week ago, we already had a working diagnosis; the New Rheumatologist had said "fibromyalgia", and the combination of Medication A and Medication B had already begun to work. Our sweet, shining girl was coming back to us... hour by hour, day by day.
So, it was a bit of curiosity that we were there to begin with. However, The Big Cheese Doctor down at Hospital City had asked us specifically to see the New Neurologist, and I figured it couldn't hurt to go ahead and make what would essentially be a "courtesy call", just to set Big Cheese Doctor's mind at ease.
We wandered around the building, searching for an office that didn't exist (because I had remembered the office number of the New Rheumatologist, who is in a building clear across the Greater Metro, and NOT the New Neurologist. Stress. Kills. Brain. Cells.) and so we wound up being just a few minutes late. No harm done, however, because apparently the New Neurologist was running late anyway. We went through the usual routine (co-pay, clipboard with more forms, passing the MRI films through the window) and sat down in a clever little waiting room that had been decorated like it was a jungle. All the way down to little chairs carved to look like animals, and elaborate murals on the walls.
There was a little less paperwork than normal this time; mostly because when I had called to make the appointment, New Neurologist's "Patient Manager" had interviewed me for nearly 30 minutes on the phone. All of that information was here, neatly typed up, and I only had to verify this, which included a list of all of the doctors we had seen. This doctor also had a policy of reviewing the case prior to accepting an appointment for a patient, although the Patient Manager explained that with the referral coming straight from The Big Cheese at Hospital City, that was a mere formality.
I started to fill out the remaining paperwork, when a Nurse Person opened the door, and motioned us back. Unlike the Wee Cheerful Girl at the New Rheumatologist, the Nurse Person was almost entirely devoid of personality. Her scrubs were animal-themed, which matched the rooms that we passed as we went down the hallway. Her hair was caught back in a cute little "scrunchy", and she was pretty enough, but she moved woodenly, as though on auto-pilot. Nurse Person showed us into another jungle-themed room; it was small, but it had a big wiggly yellow snake inlaid into the bright green linoleum floor, a huge silhouette of a tree fastened to one wall that doubled as a yardstick to measure the height of the patients, and even a little bamboo and grass valance over the window that completed the whole decorating scheme. Everything was clean, and bright, and as I finished the paperwork, Twinks and I chatted about how the artist who created the snake in the linoleum could have made the inlay fit so perfectly.
New Neurologist bounded into the room like a giant friendly puppy, with a Resident trailing him more slowly. We shake hands all around, and just as I sense we are about to begin... Nurse Person taps on the doorframe; Resident has phone call. Resident leaves, mumbling apologies to New Neurologist.
And then a funny thing happened. New Neurologist sits on the little swivel stool, twirls all the way around, and says "Boy! Am I glad HE'S gone! Now we can have some fun!"
Twinks, of course, immediately starts laughing; between the bad Groucho Marx imitation and the fact that dour-faced Resident is gone, the atmosphere in the room is light and easy. The doctor turns toward me, and in one of the few serious moments we will have during the entire visit, asks me why exactly we are there? I explain about The Big Cheese, and The New Rheumatologist, and how we have a diagnosis, but we want to make sure that nothing is overlooked. He nods, winks, and then he swings back toward Twinks, who is sitting idly on the exam table, swinging her legs. He catches her feet, knocks on the braces that run up the back of her legs, and starts with the jokes.
"Knock Knock"
Who's there?
"lettuce"
Lettuce who?
"Lettuce get going, here kid! Get those shoes and braces off!"
For the next 30 minutes, he joked, laughed and smiled as he did the standard neurological exam that we were already familiar with. He paused only once or twice to ask me questions; most of the time he worked directly with Twinks, all of the time with a sense of humor that was razor-sharp and lightning-fast. He threw puns at Twinks rapid-fire, and she caught them all, and zinged him with a few of her own; I only wish I had a transcript of their exchange! He would throw back his head and laugh - full, real laughter - whenever she would get one over on him.
Finally he motioned to Twinks to scoot over on the exam table. He pulled up next to her, and began to draw on the paper that covers the table.
"This" he said, motioning towards a straight line he had drawn, "this is like your pain. It started waaaaaaay over here, a long time ago when you were born, right?" She nodded. "OK", he said. "So, here's the thing. Your whole life, the pain was pretty much like this" and here he pointed to the line that was parallel to the edge of the table, "and then, a couple of years ago, it started to be like this" and here he spiked the end of the line upwards, until it went nearly off the opposite side of the paper. "Am I RIGHT?" he said. Twinks nodded, not sure where he was going with the diagram. He looked up at Twinks "Actually," he said "I'm on your LEFT! Your LEFT! Get it?" more laughter, then "So, here" he pointed to the place where the line begins to curve sharply upwards "is where the fibromyalgia began. And here" he pointed to Twinks head "is where we will conquer it".
He told her then that neurologically speaking, as far as he could tell (and he pointed out to her that he was, after all, an alleged expert on such things) there was nothing wrong with her. He said that there was nothing to see on the MRI, except "bones and junk like that" but nothing "bad, icky or gross!" Then, he told her that because she had been in pain so long, and because her pain had gotten worse with the fibromyalgia, her brain had forgotten what it felt like to not be in pain. In other words, until we had started Medication A and Medication B, her central nervous system was full-out overloaded with pain. It would have been almost impossible for her to stop the pain any other way, without some kind of help, like medication.
Then, there was a moment that completely surprised me. He turned swiftly to me, and said sotto voice "She's not depressed, you know. She was in pain, she wasn't depressed." His voice became louder, and he said "Have you ever seen a marathon runner? They always look terrible, you know! Like they are about to CROAK! The way they can run those marathons is because their brains produce all of these really great chemicals that help stop the pain, and help keep them going." He paused, then "You just need to convince your brain to get back into the endorphin and serotonin business!"
He explained (in between the giggles and a few more bad jokes) that while he can't do anything to make the pain go completely away, that Twinks herself could "practice" her pain away. That by using simple visualization techniques, she could help her brain get ready for success by mentally rehearsing having a whole day without pain. He also told her that she was going to have to be like an athlete, or an actor, who uses visualization to create a "winning performance". The difference is that for her, winning is making it through the day without pain.
After a few more jokes (and a really, really bad imitation of Popeye the Sailor Man) he stood up. He asked Twinks if her mother always laughed this much when she went to the doctor's office. Twinks merrily replied "Oh no! Only here!" which caused New Neurologist to laugh heartily again. He told us that he had really enjoyed meeting us, and that he was very glad to see that we had both retained our sense of humor through everything. I replied that it was either find the laughter or lose our minds, so we did both.
He offered his hand to me then, as if to shake hands again, then withdrew it just as I reached out. He bobbed his head instead in an awkward bow, then as soon as I withdrew my hand, he stuck his out again. We repeated the silliness once more, to the increasing laughter of all three of us. "Go away!" he cried, passing his hand over his forehead in mock drama "Go away! I have no need of you further!"
Then, he was gone, out the door. The Resident never came back; it was just as well. We saw him as we were leaving, in the hallway... he looked dazed and confused. Poor kid.
=========================
If laughter really is the best medicine, the New Neurologist is the best doctor in the world.
=========================
So, now we are done, at least for a couple of weeks, with the doctors.
We'll have to go back to the Pediatrician and the New Rheumatologist for follow-up visits, but we don't need the New Neurologist, or Physical Therapy, or most notably, The Quack.
We'll be moving forward again. Twinks made it through two full days at school this week; a huge triumph, considering that she hadn't gone to school full-time since last October, and hadn't been to school at all since January. Already the pace and tempo of our lives have changed; The Wrench and I are beginning to look like humans again, now that we are all getting some sleep.
We did it. We made it through. We made it to the last specialist, and the prize is that our Twinkie is getting her life back.
Wednesday, April 19, 2006
AND the winner is...
First things first: Our friend Donna, who is the lovely and talented wife of our friend Garrett nailed it. 500 points for Donna, and Garrett gets 100 bonus points just for being smart enough to be married to Donna. And, for being nice enough to pass on her wisdom to us. Thanks again to both of you.
=======================
Yes, indeed, we do have a diagnosis. From a lovely, compassionate, caring doctor - no Quacking here - and more importantly, we have a Treatment Plan.
And because we have a Treatment Plan, we can now begin to have a Life Plan again.
It has been an amazing two weeks.
=========================
We needed a new rheumatologist. We found one, but The New Rheumatologist wasn't easy to get in to see. It took a bit over two weeks to get in, and that was after he personally reviewed her case, and spoke to at least two doctors who have been treating her. We had faxed over a rather lengthy, but detailed, medical history for her along with the names and phone numbers of our Pediatrician and the Big Cheese Doctor at The Shriners Hospital down in Hospital City. His office called the next morning to say that he wanted her to come on the next available appointment.
Between The Quack and the New Rheumatologist, we went to see our Pediatrician. First, to ask her what she thought about the New Rheumatologist, and to get some preliminary bloodwork done, so that the New Rheumatologist wouldn't have to wait on the results. Ever since The Quack, we were feeling a bit, um... unsure about any unknown specialist, so it seemed like a good idea.
Our Pediatrician is an adorable, sweet woman who is typically rather calm. On this day, however, she is distressed by our report on the visit to The Quack. The more we talk, the more The Wrench and I realize that The Quack is indeed just that - and that we really do need to go to the New Rheumatologist, and we need to go ahead and see the New Neurologist as well. (but the New Neurologist is a blog entry all his own...) The Pediatrician tells us that she takes one of her own family members to see the New Rheumatologist, and that she really admires the New Neurologist. She has the lab draw the blood from Twinks for the special tests that the New Rheumatologist will want to see. And then she says...
... "I know what The Quack said about Twinks simply being depressed is really upsetting you. But I think that I would like to start her on an anti-depressant, in the event that this really is fibromyalgia. That way, if it is, we can begin the other medication right away to treat her pain."
Huh?
Up to this point, I hadn't read much about the treatment of/for fibromyalgia. I was quite familiar with the symptom set, simply because it matched Twinks symptoms so very well. But as far as treatments went, I really hadn't learned much about it yet. That was about to change.
She explained that the ideal treatment for Twinks would be a combination of two low-dose antidepressants; that one alone might work a little, or not at all, but that the two together had a really good success rate. We heard all about how tricyclic antidepressants can be combined with a selective serotonin reuptake inhibitor as an effective and desireable treatment. She also explained that she would feel much more comfortable starting Twinks on one of the drugs now, "Medication A" and then if our suspicions were correct, and it was fibromyalgia, then we could begin the second drug "Medication B" immediately. By starting them one at a time, if there were any odd side effects we wouldn't have to worry about which drug was causing them.
So, we did. The Wrench and I weren't happy about it - we didn't want to think about putting our twelve year old daughter on anti-depressants for crying out loud, but we did it, hoping against hope that it would help. We took the little sample package of the little pills, and promised to call The Pediatrician in three days to report how Twinks was doing.
Remember, at this point, we still had a week to go before we saw New Rheumatologist.
======================
The week passed. Twinks dutifully took her low-dosage little pill every day at lunchtime. She still hurt. She still cried at night, curled up in a little ball. We couldn't tell any difference at all, and neither could she. Medication A seemed to be useless.
======================
When we arrived at the New Rheumatologists offices, I noticed right away that not only were the magazines current, but there were other obvious signs of technology - like a new flat-panel LCD television in the waiting room, and actual computers being used by a cadre of lovely Cheerful Girls who were all garbed in the same Cheerful Scrub Suits. This, coupled with the fact that there were also other patients present in the waiting room, certainly helped me feel much more comfortable.
We found a spot near the corner between two large potted plants (or small potted trees, I'm not sure which) and settled in to the comfortable, tastefully appointed overstuffed chairs. The Wrench had insisted on coming to this appointment, (in the event of further Quackage) and he held The Twinkie's hand, speaking softly to her as I filled out yet more forms. The Twinkie was wan and pale this morning, and her tears were close to the surface; you could see the pain shrouding her little form. I clipped the medical history that we bring with us to all of the appointments to the forms, and handed them back through the window to one of the Cheerful Girls.
We didn't have to wait long until the door swung open, and the shortest little Cheerful Girl you would ever see bellowed "TWINKS!" into the room. We jumped up, and wended our way across the room to find Wee Cheerful Girl holding the door open, with a clipboard clutched to her chest, and a bright smile on her face.
Wee Cheerful Girl shepherded us into a Cheerful Room, where we took our places. She bounced into the room, and briskly began to go through a checklist of symptoms. She flipped through the medical history that we provided, underlining and then highlighting passages that she apparently wanted New Rheumatologist to focus on. She chattered with Twinks, finally making her laugh just a little when she pointed out that Twinks was already taller than she was, and then she bounced from the room.
We only waited long enough for The Wrench to ask how *this* setup compared to The Quacks offices - and in came New Rheumatologist. NR is not only significantly younger than The Quack, but before he even opens the chart he exams Twinks, carefully checking each of the 18 "pressure points" that are one of the hallmarks of FM. He talks to her - not at her - and he listens carefully to what The Wrench and I have to say also. The exam alone takes more than 20 minutes; by the time he is done talking with us, nearly 45 minutes has passed. He flips open the chart, and begins to make notes. The room has fallen quiet, and all you can hear is the hum of a distant air conditioner and the scratching of his pen on the paper.
Finally, he closes her chart (how did it get so thick, so fast?) and he smiles weakly at us. "You know, of course, that fibromyalgia is a set of symptoms - not a disease." He continued then, "And, as such, there is no cure for it. We can treat the symptoms effectively most of the time." He paused. "And, it is fairly rare to see it in a child. We hate to see it in a child..." He sighed "because it's a long road then". He patted Twinks knee, and then he handed me the chart and the paperwork. "I know that the pediatrician has started her on Medication A already. She can start Medication B whenever you think she's ready". He opened the door to the room, and motioned to Twinks "The goodie basket is over there - go help yourself!" and she was off of the table, and out into the hallway, digging through the little toys and stickers. The Wrench appears incredulous; he looks at me, and I can feel the emotion coming off of him in waves. I felt odd, and disconnected, almost like I was watching from a distance. I collected the return appointment card, the receipt for the co-pay, and said good-bye to the all of the Cheerful Girls.
Suddenly, somehow, we were in the parking garage. I don't remember the elevator ride down to the lobby, or crossing the bridge into the garage; I was still walking numbly behind Twinks and The Wrench. But then there we were standing next to the minivan, and The Wrench slid open the door, and helped Twinks get in. He closed it, and leaned against it for a moment, passing his hand over his eyes. He raised his head, and looked at me, and said "That's it? We came away AGAIN from another doctor with no diagnosis? What the &%#$ is going on here?"
And then I landed with a thump; because I realized what The Wrench didn't understand.
The New Rheumatologist hadn't come out and said the words "Your daughter has fibromyalgia" because he assumed that we had already heard them. He was confirming what he thought we already knew.
I looked at the receipt that was still in my hand. There was a little box in the lower left corner of the paper, and in that box were written numbers and one single word. The numbers didn't mean much at that moment; it was the word that held meaning. I pointed to it then, showing The Wrench.
Fibromyalgia
It was just like that. Right there, in a parking garage, you realize that your life changes forever.
====================
At home, we called the Pediatrician, left a message, and then I realized that I needed to call the New Rheumatologist office, to get a copy of his report as soon as possible.
Wee Cheerful Girl answered, and after copying down my fax number, promised that she would fax over a copy of the report as soon as it came back from transcription. She burbled happily that they were running "on average" only 48 hours right now. 48 hours seemed like a lifetime to wait just then... so I asked Wee Cheerful Girl if she could double check the diagnosis codes in the corner of the receipt for me - I wanted to make sure that I was reading them correctly, since my copy was so faint. "Sure!" she chirped, and after some rather serious rustling of papers, she came back on the line. "Yep! It's fibromyalgia all right!" she crowed. "Do you want those codes, or...?" No need, I told her.
The Pediatrician called back late that afternoon. We chatted about how lovely the New Rheumatologist is, and how nice all of the Cheerful Girls are, and what a great view they have from up there in their offices. And then The Pediatrician said that she had already talked with New Rheumatologist, and they agreed on Medication B, and would I like for her to go ahead and call that in to our pharmacy, so we could start on it tonight?
Silly woman. Wild horses couldn't have kept me from that pharmacy door; if there was even a chance that it would give Twinks some relief I would have crawled over broken glass. Broken glass that was on fire, and full of snakes. With big hairy spiders. Just let me get the car keys, and we will be there, waiting for Medication B.
==================
Nine days ago, we added Medication B with Medication A, and what we got was...
... our daughter back.
Twinks is now nearly pain-free.
Twinks sleeps through the night.
Twinks is going to try to go back to school tomorrow.
And we just got a little bit closer to Normal.
=======================
Yes, indeed, we do have a diagnosis. From a lovely, compassionate, caring doctor - no Quacking here - and more importantly, we have a Treatment Plan.
And because we have a Treatment Plan, we can now begin to have a Life Plan again.
It has been an amazing two weeks.
=========================
We needed a new rheumatologist. We found one, but The New Rheumatologist wasn't easy to get in to see. It took a bit over two weeks to get in, and that was after he personally reviewed her case, and spoke to at least two doctors who have been treating her. We had faxed over a rather lengthy, but detailed, medical history for her along with the names and phone numbers of our Pediatrician and the Big Cheese Doctor at The Shriners Hospital down in Hospital City. His office called the next morning to say that he wanted her to come on the next available appointment.
Between The Quack and the New Rheumatologist, we went to see our Pediatrician. First, to ask her what she thought about the New Rheumatologist, and to get some preliminary bloodwork done, so that the New Rheumatologist wouldn't have to wait on the results. Ever since The Quack, we were feeling a bit, um... unsure about any unknown specialist, so it seemed like a good idea.
Our Pediatrician is an adorable, sweet woman who is typically rather calm. On this day, however, she is distressed by our report on the visit to The Quack. The more we talk, the more The Wrench and I realize that The Quack is indeed just that - and that we really do need to go to the New Rheumatologist, and we need to go ahead and see the New Neurologist as well. (but the New Neurologist is a blog entry all his own...) The Pediatrician tells us that she takes one of her own family members to see the New Rheumatologist, and that she really admires the New Neurologist. She has the lab draw the blood from Twinks for the special tests that the New Rheumatologist will want to see. And then she says...
... "I know what The Quack said about Twinks simply being depressed is really upsetting you. But I think that I would like to start her on an anti-depressant, in the event that this really is fibromyalgia. That way, if it is, we can begin the other medication right away to treat her pain."
Huh?
Up to this point, I hadn't read much about the treatment of/for fibromyalgia. I was quite familiar with the symptom set, simply because it matched Twinks symptoms so very well. But as far as treatments went, I really hadn't learned much about it yet. That was about to change.
She explained that the ideal treatment for Twinks would be a combination of two low-dose antidepressants; that one alone might work a little, or not at all, but that the two together had a really good success rate. We heard all about how tricyclic antidepressants can be combined with a selective serotonin reuptake inhibitor as an effective and desireable treatment. She also explained that she would feel much more comfortable starting Twinks on one of the drugs now, "Medication A" and then if our suspicions were correct, and it was fibromyalgia, then we could begin the second drug "Medication B" immediately. By starting them one at a time, if there were any odd side effects we wouldn't have to worry about which drug was causing them.
So, we did. The Wrench and I weren't happy about it - we didn't want to think about putting our twelve year old daughter on anti-depressants for crying out loud, but we did it, hoping against hope that it would help. We took the little sample package of the little pills, and promised to call The Pediatrician in three days to report how Twinks was doing.
Remember, at this point, we still had a week to go before we saw New Rheumatologist.
======================
The week passed. Twinks dutifully took her low-dosage little pill every day at lunchtime. She still hurt. She still cried at night, curled up in a little ball. We couldn't tell any difference at all, and neither could she. Medication A seemed to be useless.
======================
When we arrived at the New Rheumatologists offices, I noticed right away that not only were the magazines current, but there were other obvious signs of technology - like a new flat-panel LCD television in the waiting room, and actual computers being used by a cadre of lovely Cheerful Girls who were all garbed in the same Cheerful Scrub Suits. This, coupled with the fact that there were also other patients present in the waiting room, certainly helped me feel much more comfortable.
We found a spot near the corner between two large potted plants (or small potted trees, I'm not sure which) and settled in to the comfortable, tastefully appointed overstuffed chairs. The Wrench had insisted on coming to this appointment, (in the event of further Quackage) and he held The Twinkie's hand, speaking softly to her as I filled out yet more forms. The Twinkie was wan and pale this morning, and her tears were close to the surface; you could see the pain shrouding her little form. I clipped the medical history that we bring with us to all of the appointments to the forms, and handed them back through the window to one of the Cheerful Girls.
We didn't have to wait long until the door swung open, and the shortest little Cheerful Girl you would ever see bellowed "TWINKS!" into the room. We jumped up, and wended our way across the room to find Wee Cheerful Girl holding the door open, with a clipboard clutched to her chest, and a bright smile on her face.
Wee Cheerful Girl shepherded us into a Cheerful Room, where we took our places. She bounced into the room, and briskly began to go through a checklist of symptoms. She flipped through the medical history that we provided, underlining and then highlighting passages that she apparently wanted New Rheumatologist to focus on. She chattered with Twinks, finally making her laugh just a little when she pointed out that Twinks was already taller than she was, and then she bounced from the room.
We only waited long enough for The Wrench to ask how *this* setup compared to The Quacks offices - and in came New Rheumatologist. NR is not only significantly younger than The Quack, but before he even opens the chart he exams Twinks, carefully checking each of the 18 "pressure points" that are one of the hallmarks of FM. He talks to her - not at her - and he listens carefully to what The Wrench and I have to say also. The exam alone takes more than 20 minutes; by the time he is done talking with us, nearly 45 minutes has passed. He flips open the chart, and begins to make notes. The room has fallen quiet, and all you can hear is the hum of a distant air conditioner and the scratching of his pen on the paper.
Finally, he closes her chart (how did it get so thick, so fast?) and he smiles weakly at us. "You know, of course, that fibromyalgia is a set of symptoms - not a disease." He continued then, "And, as such, there is no cure for it. We can treat the symptoms effectively most of the time." He paused. "And, it is fairly rare to see it in a child. We hate to see it in a child..." He sighed "because it's a long road then". He patted Twinks knee, and then he handed me the chart and the paperwork. "I know that the pediatrician has started her on Medication A already. She can start Medication B whenever you think she's ready". He opened the door to the room, and motioned to Twinks "The goodie basket is over there - go help yourself!" and she was off of the table, and out into the hallway, digging through the little toys and stickers. The Wrench appears incredulous; he looks at me, and I can feel the emotion coming off of him in waves. I felt odd, and disconnected, almost like I was watching from a distance. I collected the return appointment card, the receipt for the co-pay, and said good-bye to the all of the Cheerful Girls.
Suddenly, somehow, we were in the parking garage. I don't remember the elevator ride down to the lobby, or crossing the bridge into the garage; I was still walking numbly behind Twinks and The Wrench. But then there we were standing next to the minivan, and The Wrench slid open the door, and helped Twinks get in. He closed it, and leaned against it for a moment, passing his hand over his eyes. He raised his head, and looked at me, and said "That's it? We came away AGAIN from another doctor with no diagnosis? What the &%#$ is going on here?"
And then I landed with a thump; because I realized what The Wrench didn't understand.
The New Rheumatologist hadn't come out and said the words "Your daughter has fibromyalgia" because he assumed that we had already heard them. He was confirming what he thought we already knew.
I looked at the receipt that was still in my hand. There was a little box in the lower left corner of the paper, and in that box were written numbers and one single word. The numbers didn't mean much at that moment; it was the word that held meaning. I pointed to it then, showing The Wrench.
Fibromyalgia
It was just like that. Right there, in a parking garage, you realize that your life changes forever.
====================
At home, we called the Pediatrician, left a message, and then I realized that I needed to call the New Rheumatologist office, to get a copy of his report as soon as possible.
Wee Cheerful Girl answered, and after copying down my fax number, promised that she would fax over a copy of the report as soon as it came back from transcription. She burbled happily that they were running "on average" only 48 hours right now. 48 hours seemed like a lifetime to wait just then... so I asked Wee Cheerful Girl if she could double check the diagnosis codes in the corner of the receipt for me - I wanted to make sure that I was reading them correctly, since my copy was so faint. "Sure!" she chirped, and after some rather serious rustling of papers, she came back on the line. "Yep! It's fibromyalgia all right!" she crowed. "Do you want those codes, or...?" No need, I told her.
The Pediatrician called back late that afternoon. We chatted about how lovely the New Rheumatologist is, and how nice all of the Cheerful Girls are, and what a great view they have from up there in their offices. And then The Pediatrician said that she had already talked with New Rheumatologist, and they agreed on Medication B, and would I like for her to go ahead and call that in to our pharmacy, so we could start on it tonight?
Silly woman. Wild horses couldn't have kept me from that pharmacy door; if there was even a chance that it would give Twinks some relief I would have crawled over broken glass. Broken glass that was on fire, and full of snakes. With big hairy spiders. Just let me get the car keys, and we will be there, waiting for Medication B.
==================
Nine days ago, we added Medication B with Medication A, and what we got was...
... our daughter back.
Twinks is now nearly pain-free.
Twinks sleeps through the night.
Twinks is going to try to go back to school tomorrow.
And we just got a little bit closer to Normal.
Saturday, April 15, 2006
Nocturnal Bunny Business...
Twas the night before Easter...
And all through the house,
that Rabbit was creeping
as quiet as a mouse.
The eggs had been stuffed
with glee, and with joy.
The contents, you see,
must delight - not annoy!
The Bunny, he paused
for a moment to see
Our sweet little girl
asleep as could be.
He was swift in his work;
not once did he stop.
He finished his rounds,
and then, with a hop...
He wiggled his ears.
He winked his left eye.
He wriggled his whiskers,
and he whispered "Goodbye!"
That Bunny is gone...
That Rabbit is done.
But for one little girl,
it's all just begun!
There are eggs to be found,
all over the place.
And chocolate to eat,
(and some on her face!)
So now we must say
to that Rabbit sublime:
Thanks for bringing us Easter;
See you next time!
Thim - Easter 2006
And all through the house,
that Rabbit was creeping
as quiet as a mouse.
The eggs had been stuffed
with glee, and with joy.
The contents, you see,
must delight - not annoy!
The Bunny, he paused
for a moment to see
Our sweet little girl
asleep as could be.
He was swift in his work;
not once did he stop.
He finished his rounds,
and then, with a hop...
He wiggled his ears.
He winked his left eye.
He wriggled his whiskers,
and he whispered "Goodbye!"
That Bunny is gone...
That Rabbit is done.
But for one little girl,
it's all just begun!
There are eggs to be found,
all over the place.
And chocolate to eat,
(and some on her face!)
So now we must say
to that Rabbit sublime:
Thanks for bringing us Easter;
See you next time!
Thim - Easter 2006
Thursday, April 06, 2006
Nickerblog's "Mystery Hotel" Meme.
Because I needed *another* mystery...
With credit to Shane at Nickerblog and Wil Wheaton for the genesis of the meme, and MM for editorial support, here follows my entry at 299 words....
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Donald stood stiffly in front of the desk; he sensed that the old man was doing his best to look as he thought the proprietor of a "fine hotel" should. The cuffs of Donald's sweater were rolled up to hide the ink stains from the blotter, and he realized too late that he had not unrolled the cuffs of his trousers. To move now would ruin the photograph; if he did, the old man would surely box his ears.
Donald always cuffed his pants as soon as he arrived at work because his first task, even before the sun rose, was to go down and feed The Monster. The monster ate coal, and lots of it; it was the monster, after all, that heated the water for the dingy, stained bathtubs and rust-streaked sinks. In the winter the monster also pushed heat through the creaky old cast iron radiators that hissed and clanked throughout the building.
The monster lived in the far corner of the musty basement. The old man called it a boiler, but to Donald it was a thing alive. It's glowing mouth was always agape with hunger; insatiable in it's need for fuel. Donald turned up the hem of his pants every day before descending into the bowels of the hotel; otherwise the coal dust ruined the cuffs of his trousers.
The photographer snapped the picture, and with a great flash of light, the scene was captured for posterity - and for the postcards that the old man thought he could sell to the traveling salesmen to show their families where they stayed. A two-cent souvenir from a two-bit town.
Donald stood stiffly, not knowing or caring that at the turn of the next century, someone would find this very photo and begin to wonder why...
º¤ø,¸¸,ø¤º`°º¤ø,¸¸,ø¤º`°º¤ø,¸¸,ø¤ºº¤ø,¸¸,ø¤º`°º¤ø,¸¸,ø¤º`°º¤ø,¸¸
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