If it quacks like a doc...

It finally happened.

We hit a "quack".

Well, I didn't actually hit him, but I wanted to, before it was all over.

And he wasn't just a quack, actually, but a honking, stinking, waddling crock of quack-sh*t .

(I'm not fond of him. Can you tell?)

I should have known that any specialist who seemingly suddenly has an entire afternoon free might be suspect, but at the time, I was relieved that we wouldn't have to wait until next Tuesday to see a pediatric rheumatologist. "A wonderful twist of fate!" I thought.

Not so. Let this be a lesson to all of us: Never, ever blindly pick a specialist from the yellow pages. Also, anything that Fate decides to twist should be regarded with the same care and caution that you would apply to, say, a ticking time-bomb.

After checking in, and paying (in advance, of course) the deductible, and filling out yet more forms, we waited. I idly noticed that some of the magazines in the waiting room were (quite literally) older than Twinks.

We continued to wait. I observed that my grandparents had owned a lamp just like the one on the corner table when I was a mere child.

We waited some more. I thought it was weird that the receptionist was hand-writing receipts, and had a pile of hand-addressed statements and invoices ready to be mailed. I tried to remember the last time I had seen paperwork like that...

Finally, after 90 minutes, the nurse finally came to take us back... ...to the Quack's office! Not an exam room, but his actual office. Desk, chairs, bookcases, books, and diplomas on the wall. And more old magazines piled everywhere.

When I saw the diplomas, I should have grabbed Twinks and run. Because the Quack graduated from Medical School before I was born.

Did I ever tell you that I'm 45 years old?

Now, as I look around the office, I'm wondering if it is indeed still 2006 - not because we have been waiting so long (now over two hours) but because there isn't anything in this room from before 1955. The furniture, the anatomical models, many of the textbooks in the shelves that run floor to ceiling behind the Quack's desk. It's like falling into an episode of "Happy Days", and you expect Richie Cunningham and The Fonz to show up at any moment.

Finally, the Quack shuffles in. I hand over a set of lab results and reports from other specialists. He flips through them with a thin, shaky hand. His hair is carefully combed over, and, as I live and breathe, he has a pocket protector. He is 75 years old, easily, and I wonder why he hasn't retired yet.

Now, Gentle Reader, you must understand - up to this point, I am perhaps a bit bemused by the situation, but not overly concerned. After all, my father-in-law is still working 40+ hours every week, and he will be 73 years old in just a few weeks. So age - in and of itself - is not something that will ordinarily prejudice me. I know many people who are in their 80s, even one lovely 91 year old woman, and they are all every bit as vibrant and active as I am.

It wasn't until he opened his mouth, and began to speak, that I realized that this particular doctor was indeed a Quack. Not a regular run-of-the-mill Quack, but a Quack of the first order, I might add.

Because, this Quack decided right away that Twinks needed to see a psychiatrist. That the reason she was in pain was because she was depressed - and don't you know, they have a new study that shows that depression causes pain? This was, by the way, without benefit of any examination, or even discussion with Twinks.

I pointed out, somewhat tersely, that pain - especially long-term, untreated pain - was known to cause depression as well. That if the cause of the pain was discovered, and the pain was treated appropriately, then the depression (if there indeed was any) would very likely cease to exist. That her father and I believed her - and believed that she is in pain - real pain - all the time. I also indicated that a rush to judgment on matters such as these might lead me and others to believe that insufficient thought and care were being given to my child's condition.

He then reluctantly indicated we should go to an exam room next door. We traipsed behind him, Twinks looking up at me with eyes that were brimming with tears. "Mama!" she whispered urgently, but there was no time for her to finish the sentence. The Quack began his examination by pressing on the "trigger points" that are commonly used to diagnose fibromyalgia. Twinks responded as I knew she would - yelping and crying out. Now the tears began streaking down her cheeks, and she tried hard to maintain her composure.

"Tendonitis" the Quack declared. "Simple Tendonitis". So, I pointed out that if it indeed is "tendonitis", shouldn't we be seeing an orthopedics specialist, instead of a rheumatologist? I handed Twinks a tissue. He replied that he could treat her for "everything, expect the depression. You will have to find a children's shrink for that". I asked him if she had fibromyalgia, or perhaps even arthritis. He replied that he had just spent the last twenty years of his life, working for the Social Security Administration, disproving claims by "liars and crooks" that were trying to "cheat our government" by "going on the dole" because they had "a condition that doesn't exist!" Here, he paused briefly to tell us how he "knew the guy who DISCOVERED fibromyalgia" and that this guy now "wishes he had kept his mouth shut" because it (fibromyalgia) is "being used by every scam artist in the country to try and defraud the Social Security Administration for disability payments".

Then, he said that only three kinds of people get fibromyalgia.

The first kind are those who are hypochondriacs. They want everyone to wait on them hand and foot, because they are so pitiful. There is nothing wrong with them that a swift kick in the butt wouldn't cure.

The next kind are those who are depressed (here he paused to look significantly at Twinks) and they want to explain away their pain with an "easy diagnosis". These people have been "lied to" about fibromyalgia, and believe that it actually exists.

The last group of people are "those who are intentionally and actively seeking to cheat the government." They are trying to fake it in order to get benefits that they don't really deserve.

He then said again that she had "common tendonitis" and that she just needed to go home, and stop worrying about everything.

By this time, I had helped Twinks get her braces and shoes back on. I stood, and gathered up our things, and headed for the door.

The Quack followed, remarking that "as soon as she sees the pyschiatrist, I can start to help her, but don't be surprised if you don't need me after she gets a few sessions under her belt".

Amazingly enough, I declined the opportunity to make a follow-up appointment.

Twinks held it together until the elevator opened in the lobby. The first thing she wanted to know was if Daddy and I thought that she was crazy. She wanted to know if we thought that she was "faking" it. She wanted to know why that doctor didn't believe her, and why he thought everyone was a slacker or a scammer.

It's a good thing that The Wrench wasn't there. Because when I told him what happened, he went ballistic.

I have spent the last four days trying to undo the damage that the old Quack has done. Twinks has finally begun to understand what we all sometimes forget: That not everyone who is a doctor, should be a doctor. That not every doctor is as compassionate as we would wish them to be. That some doctors should have to wear big yellow shoes, and a bright yellow bill, so that we would all know them for what they are:

A Quack.

Miscellaneous paragraphs and minor ramblings

First of all - apologies to Garrett - It was his wife who suggested that we look about fibromyalgia. (I can't believe I can spell that word). We have the appointment scheduled for a week from today (Tuesday) with a pediatric rheumatologist.

Thank you, Garrett - and to your lovely wife as well. :)

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Next, on the advice of the PR, we are going to see our "regular" pediatrician later this morning. She will get the preliminary lab work done for us - apparently there are special blood tests that can indicate if what Twinks has is arthritis, fibromyalgia, or ... ? something else? I am clutching a laundry list of what the PR called "indicators", although it looks much like alphabet soup to me. We are supposed to make sure that all of these indicators are tested for, and to get copies of the results to hand-carry to the PR next Tuesday.

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Spring Break came and went at our house with little fanfare; Twinks spent most of it trying to get caught up with her classmates on her homework. It is amazing to me that she can do the work armed only with a textbook, and three hours of instruction from the Homebound Teacher every week - and she is still scoring consistently high A's in all of her subjects. She plans on sitting for the AP/Honors testing next week, and has already been recommended by her English teacher for AP/Honors English next year.

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I need some landscaping help - anyone out there know anything about how to keep bunnies from eating your baby trees? (and please - no bad jokes involving carrots and/or diapers.) I have a seedling from the Lincoln Farm in Illinois that I want to plant, but there is a rouge batch of bunnies living around here somewhere (I think under our garden shed) that have been chewing on my two-year old native trees already, and I don't want to lose my Lincoln tree to them. Any suggestions that don't hurt the bunnies are welcome.

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I have to report that Twinks is worse than ever. The pain that started last summer in her legs, and moved down to her feet, has now crept all the way up her back, over her shoulders, and is down her arms into her hands. There is little of her that does not hurt; when we hold her as she cries, we worry that merely holding her may make her hurt more.

I don't know how much longer she can bear up under this pain. I am nearly mad with the grief of watching her suffer now - and I can't let it show. She actually apologized to The Wrench and I tonight, because she thought that she was being "too much of a whiner".

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Finally, I have to say Thank You to all of you who keep coming here and reading. Your comments have all been so positive, and it really does make a difference. It is more than just that first thrill you have, when you realize that someone is reading your blog. It is about knowing that there is a connection on the other side of the screen. It is about what so many of us have come to realize - this "family" of bloggers and readers that has happened is so precious. I wouldn't know most of you by sight if I saw you on the street, but I feel like I know your hearts and souls from your words. And your words have comforted me much and often, especially lately. Thank you again.

Still creeping forward

First of all, I wanted to say "Thanks" to Garrett, who had the same idea we did, at about the same time we did. In fact, about 24 hours before Garrett left his suggestion for me, The Wrench and I had decided we needed to investigate fibromyalgia as a possibility. BTW, Garrett - say "Hello" to Seattle for me. I lived there for a couple of years back when Starbucks had one location - down on Pioneer Square. Seattle (and the entire Pacific NorthWest) is incredibly beautiful; if you have not yet visited, you really should.

So, we have found a rheumatologist. Specifically, of course, a pediatric rheumatologist. Because, when The Wrench and I look at all of The Twinkie's symptoms, they do fit fibromyalgia. Really well. Really, really well. So - while trying NOT to get our hopes up too much - we have an appointment with a doctor we found in the Yellow Pages. I feel weird about just taking any name from the phone book. So, I continue to troll the Web, trying to find a hint, a suggestion of who we should go see.

All the while, trying hard not to get my hopes up that this is "it". That this will be the time we come home with a diagnosis.

That is a weird notion.

"I'll take 'Sentences a Parent should never have to Utter' for $500, Alex.
"Let's hope that it is fibromyalgia, honey!".

I certainly never thought that I would find myself sifting through the Internet in search of a diagnosis, hoping that it would be something "good" like fibromyalgia. "Good" in this instance is a relative term. Because if there *has* to be something wrong, let's hope it is something relatively benign, like fibromyalgia. And there is something wrong; what it is we just don't know.

Oh, the enemy unknown is so much harder to fight....

A salute to a soldier...

In a recent post, our good friend Magazine Man remarks that

"At moments such as these, you can only amuse yourself with the idea that Fate enjoys you as her private toy..."

That's pretty much how I felt standing in The Hospital exam room on Tuesday morning.

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Twinks doctor at The Hospital is The Big Cheese. The Head Honcho. The Number One Guy. He's the Chief of Staff of The Hospital. He is one busy guy, and I don't doubt for a moment that his schedule would probably leave most of us exhausted and wrung out before noon.

Ordinarily, we actually *see* him once a year or so. When we go in for follow-up visits, or when we need to get a new set of braces "approved" after they have been fitted by O & P, we often see either his NP, or a Resident from the state medical college. It's fine by me, because The Hospital is a teaching hospital, as well as a research facility, so I expect it.

This time, however, I asked specifically to see The Doctor. Live, and In Person.

I had spent the previous week collecting up copies of reports from *other* doctors here in The Greater Metro, and running around getting copies of radiology films. They were all handed over to The Doctor's assistant so that he could review everything prior to coming in to the exam room.

I knew when he opened the door. I knew when he sat down on the little rolling stool, and glided over to Twinks, who was sitting poised with expectation on the exam table. He touched her folded hands lightly, to insure that he had her full attention, and then he said the two words that I knew he was going to...

..."I'm sorry".

He went through everything - telling us that it was good news that this was negative, and that didn't show up either, and the other thing, well that's great too, because everything there looks fine. Orthopedically speaking, that is. "There's nothing I can do from here" was how he concluded his little speech.

Finally, The Twinkie blinked back tears, and whispered "But it hurts. So much!"

The Doctor could do nothing but pat her gently, and tell me to go home and find another specialist. He handed back the huge manilla envelope that contains the copies of all of the MRI films, and brightly noted that because Twinks is doing so well from an orthopedic standpoint that we don't have to come back to see him for another year, although he recommended we set our own schedule with the O & P department. I sat numbly, waiting for him to leave, furiously blinking back my own tears.

As soon as the door closed behind him, Twinks began to sob, and so did I . We couldn't hold it in any longer. I stood next to her, and held her while she cried out all of her frustration and pain. I mopped our faces, and as we each drew a shuddering breath, the door opened again.

It was the Care Coordinator.

She is a very nice lady. One of her duties is to help families like ours find the specialists they need in their hometown. She scurried in and out of the room, bringing referrals and Kleenex, and making sure that Orthotics & Prosthetics had us on the waiting list for the much-needed adjustments to Twinks braces. She hugged us both, and tried to comfort The Twinkie, telling her that we just need to find the *right* doctor for her kind of pain. She encouraged us to remain in the exam room for as long as we felt we needed to, and then she was gone again.

It was then that I felt as low as I ever have. I cannot help our daughter; I cannot neutralize her pain. I cannot seem to find the right doctor, I cannot even tell her when the pain will end, only that her daddy and I will not give up on her.

I felt as though Fate was indeed toying with me. That bitch.

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We didn't stay in the exam room; we went back out to the main waiting rooms, to listen for the familiar page from O & P. Twinks was emotionally and physically exhausted, and fell asleep next to me on the couches. I watched the other families come and go, listened to the children playing over in the corner, smiled at The Shriners who had driven the vans full of patients and their parents to The Hospital. And then, through the picture window that looks into the atrium, I saw him.

At first, I thought he was just another patient; a teenage boy. But as he came closer to the windows next to where we sat, I could see that he was older. I remembered that The Hospitals had committed to treating Veterans home from Iraq who needed prosthetics for free. This then, must be a soldier. A soldier who was taking his first wobbly steps on new prosthetic legs.

He would take a few tentative steps, pushing away from the medical personnel in his eagerness, and go down. A flurry of hands would shoot forward to pull him gently back up, and he would stagger away again. In his efforts to walk unassisted, he was so resolute that there was no doubt to anyone watching that he was going to do this. A crowd began to assemble loosely along the perimeter, watching, clapping, and shouting encouragement. Whenever the soldier would drop, he would allow those nearest to him to help him up, but then he would shake himself off, and try again.

Suddenly, I saw this soldier as a metaphor for our situation. That even though at the moment, we are shaky at best... with time, things will get better. That if we can just keep getting back up off the ground, eventually we will be able to stride forward again. And that we are going to have to graciously accept a helping hand from time to time.

Wherever you are tonight, soldier, you gave me back a little hope. You showed me, and everyone at The Hospital, that sometimes it takes everything you have inside you to keep going. That you just have to get back up one more time than you fall, in order to be successful.

Thank you, soldier.

Taking a break...

...from packing.

To go to Hospital City.

Again.

:::sigh::: I actually had a little flutter of panic tonight. For one moment, I couldn't picture the now-familiar route to Hospital City. Had no idea of how to get there in the morning, once I turned out of our driveway.

It was an odd, disconnected feeling.

Rather ironic, actually, considering how many trips we have made to The Hospital in the last couple of years.

This time, we are going to depart armed with x-rays and MRI films and photocopied reports from doctors. (I'm learning - never give away the originals!) The reports include words and numbers that are gibberish to me, although I have waded through them enough times to figure out that they all say the same thing: We don't know what's going on with this kid.

It frightens Twinks that none of these doctors have an answer for her pain. Her pain is increasing again - now it washes down her legs almost non-stop. The pain in her back is moving higher, and no position, or any number of cushions, makes it go away.

In the morning, we will load up the suitcase, the ice chest (hey - I'm NOT going without my Diet Coke!) and "the kitchen", our tote bag that carries our snacks and picnic supplies. I wish that we could stop near the banks of The River, at the shady little glen we found on a previous trip for an open-air luncheon... but I know that won't happen on this trip. Tomorrow, we will stop every hour, so that her joints don't stiffen from the pain. We will frequent the small-town "Quickee-Stops" and the Diamond Shamrock gas stations where the ladies room key is tied to a huge chunk of some former automobile. We will stop at Burger Kings and McDonalds and Dairy Queens (all of your fast-food royalty). We will stretch our legs, use the bathroom, maybe buy a postcard, or some other little trinket, and we will go on again. For another hour.

One hour at a time, one mile at a time, one minute at a time, we will get there. And on Tuesday morning, we will once again haunt the halls of The Hospital, hoping that Our Doctor can take all of the clues, all of the symptoms, and put them together into a diagnosis.

Non-stop

Our sweet Twinkie is hurting (again) tonight.

The Wrench and I have again searched the Internet in vain, looking for the answer that still eludes us. No particular set of symptoms matches exactly, no syndrome or virus can account for the waves of misery that wash down The Twinkie's legs.

Her pain seems to be getting worse. Or, maybe her tolerance for the pain is diminishing. Either way, it is horrible to watch.

One of the hardest things a parent ever has to do is watch their child suffer. Knowing that there is nothing you can do to help your child, except to be there with them. Watching this day after day has ground The Wrench and I down emotionally and physically. We suffer with Twinks, we worry about her. We try to comfort her. We fail.

I want answers. I want to know why we can't find the source of Twinks pain, so that it can be stopped.

I want to know why the prescription medicines that are supposed to bring the relief that she needs... don't work. At all.

I want to know to know, now.