Thursday, April 14, 2011

Consider This Your TMI Warning: Discussion of Bodily Fluids Ahead

I pee a lot. 

And by a lot, I always thought it was just frequency because my bladder always seems to be the size of a pea.

But no, I really do pee a lot in volume too, apparently. 

My new neuromuscular neurologist wanted me to do a 24-hour urine sample to do a heavy metal screen, even though he doesn't think it's likely to be my problem. 

The timing was complicated because I was told I needed to drop off the bottle of urine within two hours of completing my 24-hour collection. And since, like I said, I pee frequently, it meant I pretty much had to be home for the whole 24 hours. 

By itself, that shouldn't be all that difficult, but I've been juggling dental work along with my usual medical appointments and well, it was just challenging.

If what I read on several medical websites is accurate, the typical healthy person produces 1.5 liters of urine every 24 hours. 

Want to guess what mine was?

C'mon! Guess! 

Although I suppose I don't have any prizes for the winner so I can just go ahead and answer my own question.

I produced 3.5 liters of urine. 

Don't bother going to google what it means when someone pees way more than normal.  There are some potential issues you can read about, but my kidneys and liver work just fine.

The reason I pee a lot is because I drink a lot. I always have, and with multiple doctors telling me how important it is that I hydrate more often than "normal" so I don't pass out, I may be drinking more than I used to. 

But even long before I got sick, early in my dating relationship with my now-husband, he commented on how much I drink and told me to get tested for diabetes. I didn't have it then, and I still don't. (I run toward the hypoglycemia end of the spectrum, sometimes more so than others.)

But I don't think it had ever really registered quite how much urine I produce until I was watching the 3-liter bottle they'd given me fill up even though the lab technician who gave it to me said not to worry because most people don't even fill it halfway. 

It will be interesting to see what, if anything, the doctor says about the volume when he gets the report ... 

Oh, and fwiw, the 3.5 liters were technically produced in 23 hours because I had a dental appointment and would otherwise miss the window. Since I dropped it off only an hour or so after I woke up, it probably would have been a higher amount if I'd been able to wait until the full window was over as my initial morning liquids made it through my system. But certainly, they won't complain that I'm not drinking enough. :-)

Meanwhile, I've got some new test results that I'm still puzzling through a bit that I will share as soon as I can put them into context. No real answers, just more puzzles. 

I'm liking this neurologist, though; I wasn't sure at the first appointment, but boy, is he thorough and apparently really enjoys a good mystery to solve. He's the first doctor who really seemed to go through all my medical records from all of the specialists to figure out what's been tested previously and what needs a closer look. 

He says he doesn't promise an answer soon, but he does promise to keep looking as long as it takes. 

And he's actually taking time to consult with both my other specialists and some experts he thinks may be able to shed some light. That impresses me because he doesn't get to bill my insurance for the time he spends on my records nor the time he spends talking to other doctors about me. (And he asked my permission to consult them, too, something no one else has done. Sure, they send each other reports and chart notes, but as far as I can tell, none of the others really talk on the phone.)   


Wednesday, April 6, 2011

I Write About My Health Because ... (HAWMC #6)

The WEGO Health challenge prompt for April 6 was to think about (and write about) why we blog.

I write about my health for many reasons:
  • To keep my friends and extended family updated about changes and developments since I got sick back in June 2007. For the first few months, I sent emails to an increasingly long list of relatives and friends who asked to be kept in the loop. I switched to blogging for efficiency's sake in October 2007, never imagining anyone who didn't already know me would ever read my blog.
  • In the hopes that someone will recognize my symptoms and help me (and my doctors) figure out what the heck is wrong with me. No, I don't get medical advice over the internet. But my primary care doc and I have found it helpful when people have suggested she consider ordering various tests for me. Sometimes she says no, that's not really a concern and explains why not. Other times, she agrees it's worth checking out. That's how we discovered that I had low ferritin levels. 
  • To combat feelings of isolation by getting to know other people who are also mostly or entirely housebound due to chronic illness. While I wouldn't wish chronic illness on anyone, it is comforting (to me) to find other people who know what it's like. 
  • To offer support to and share information with other people, especially those who also struggle to get a diagnosis and/or are parenting with chronic illness. I'm so grateful for all the support I've gotten from the online chronic illness community, and I love opportunities to pay it forward.
Meanwhile, take a few minutes to go check out the latest edition of Patients For A Moment, my favorite blog carnival. Hayzell got so many fabulous contributions that you absolutely should go read!! 

Tuesday, April 5, 2011

The Health Q&A I'd Like To Write (HAWMC #3)

WEGO Health's Day 3 challenge was to write your own health Q&A.

Q: Doesn't the fact that a bunch of doctors have failed to come up with a diagnosis after more than three years mean there's nothing wrong with you?

A: Medicine is more of an art than a science sometimes, and chances are there are more diseases out there that they don't know about yet than ones they do. It would be nice to have a label (and even nicer to have a cure or even a treatment that helped me be more functional), but there are a lot of people out there in similar straits. They don't make headlines, but there are television shows ranging from Mystery Diagnosis to House, MD that specialize in showing complicated medical cases that someone (real or fictional) has solved. I wish there were a television show that specialized in publicizing the cases of people like me who are still waiting for our diagnosis. An American Autoimmune Related Diseases Association study found that the average time for diagnosis of a serious autoimmune disease is 4.6 years. "During that period, the patient typically has seen 4.8 doctors; and 46 percent of the patients were told initially that htey were too concerned about their health or that they were chronic complainers."

Lucy Vodden, who as a young girl was the inspiration for the Beatles song Lucy In The Sky With Diamonds, was sick for 10 years before finally being diagnosed with lupus. She died five years later in 2009. 

Ridiculous Cure (HAWMC Day Four)

The day four challenge from WEGO Health is to write about a ludicrous headline or ridiculous cure for one's health condition.

I may have been a liberal arts major (my degrees are in journalism and religion), but I have a science-based (or evidence-based) brain. I just can't help it. I'm skeptical and cynical, and I hate the crazy cures that pop up on the internet and/or in conversations with well-meaning acquaintances.

There are the supplements that people credit with miracle cures of just about anything. There are the special diets -- gluten-free, dairy-free, low-carb, caveman diet, blood type diet, the cleanses, the fasts, the detox diets. (Don't get me wrong -- eating gluten-free and/or dairy-free can make a huge difference for those who have allergies or sensitivities or celiac disease that require those changes.) Without other medical reasons for it, special diets that restrict various foods don't cure people.

The therapist I've been seeing is a fan of the emWave Personal Stress Reliever. I first was introduced to biofeedback as a treatment for migraines when I was a kid. I do think biofeedback can be helpful in managing pain, and I still do some of the exercises I learned when I was a kid. But my scam radar went off when the therapist told me that using the emWave can cure just about anything, including autoimmune diseases like rheumatoid arthritis and lupus. It can even, she says, reverse the damage to joints and organs those diseases sometimes cause. And if you believe that, I've got some swampland I'd like to sell you, and I'll even throw in a really nice bridge in Brooklyn. ;-)

It would be nice to find a miracle cure. And I understand why people fall for scams promising cures -- I completely grok feeling desperate and that it would be worth almost any amount of money if it made me better. But I think there's a special place in hell reserved for the people who take advantage of people who are suffering by offering them a "cure" that, if they're lucky, will turn out to be innocuous.

Health Haiku

The WEGO Health challenge for April 5 is to write one (or more) haikus about one's health. I'm so not a poet, but here goes anything ...

Pain, fatigue follow
Seemingly whate'r I do.
I'm so tired of this.

My child wants to play
But I have no energy.
I push through for her.

What can I say that
Offers insight into my
Illness? I've no words.

Autonomic Function Test Results

I love it when I get tests done at the local medical school and they give me access to the results online, often before I see the ordering physician.

In this case, I'll see the neuromuscular neurologist late tomorrow afternoon, but I was able to read the autonomic function test results today.

Most of the test results were within normal parameters, including, apparently, that valsalva maneuver that made me think my head was going to explode. (Really? It's supposed to feel like that?!)

But the tilt-table test was definitely wacky.

I typically have low blood pressure. In fact, sometimes it's too low. Generally, as long as I'm 90/60 or higher, I'm OK. But times when it's running lower, I run into trouble. 

During the autonomic function testing, I noticed that early on, my blood pressure was on the low side, but I figured it was because I was lying down. And running 87/55 wasn't that low compared with my normal.

I know it spiked quite a bit during the valsalva maneuver, but I guess that's normal. 

What wasn't so normal was the way it spiked on the tilt-table test. 

According to the test results, my blood pressure went from 117/75 (I hadn't gotten quite down to normal after that damn valsalva maneuver) to 185/155. My heart rate, which went from being consistently normal before I got sick to running high all the time essentially overnight, jumped from 106 to 181. 

No wonder I was wondering if anyone ever died of an aneurysm! It may have been the longest six minutes I've ever had. 

I wasn't surprised that my heart rate spiked. That's what happened when I had the test two years ago. But last time, my blood pressure stayed about steady. I think it dropped slightly, if I'm recalling correctly. 

So I'm not sure what it means that I previously had orthostatic hypotension and now I apparently have orthostatic hypertension. But it's pretty clear that I definitely still qualify for that dysautonomia diagnosis.

Fwiw, the conclusion on the report was, "This is an abnormal autonomic function testing. The patient has exaggerated increase in the blood pressure and heart rate during the tilt table test suggestive of sympathetic

It will be interesting to see what the doctor has to say about it tomorrow. 

Monday, April 4, 2011


WEGO Health issued a challenge to bloggers to post daily in the month of April using their idea prompts. I'm late to the party, and probably won't manage the 30 posts anyway, but figured what the heck, it doesn't hurt to do the ones that appeal. :-) The first prompt was to create an acrostic of a word based on your health condition. I chose the word "mystery" for my mystery illness. Although truly, I could probably do 30 days' worth of posts just doing acrostics for the various health issues I have.

My symptoms keep growing, but no answers come
Year after year has gone by since this mystery started.
Sometimes I feel hopeless that there will ever be a cure for me
Though I try to keep a positive focus, counting my many blessings.
Every time I see a new doctor or have a new test, I get my hopes up again.
Results don't seem to follow, though.
You (my blog readers) help give me the strength to keep slogging through.



Friday, April 1, 2011

We All Get By With A Little Help From Our Friends

I'm sorry, I sobbed. I'm helpless.
That's where you're wrong, she told me. You're not helpless. You need help. There's a big difference.
                               --Vanessa, remembering a conversation with her mother, in Jodi Picoult's Sing You Home

So if asking for help doesn't mean one is weak, why is it such a hard thing to do for some of us?

I never liked asking for help, even before I got sick. I've always been fiercely independent. But when you have a chronic illness, and especially if you're a parent with a chronic illness, it becomes crystal clear even for people like me that we all need help sometimes. 

Of course, even if it's crystal clear, I still am apparently learning that lesson.

This week, I had some pretty thorough autonomic testing at the local medical school. I'd had a tilt table test at a different hospital a couple years ago and was diagnosed with dysautonomia by my cardiologist, but this new neurologist wanted some more thorough testing done.

I thought the hardest part would be the preparation: I had to stop taking almost all my medications for two to seven days before the test. Since I'm still on a break from pain meds, that wasn't the issue. The big challenge was seven days without Advair and two days without my allergy medicine. I also had to stop taking Nortriptylene for seven days, which meant that my headaches were a daily occurrence and the severity ratcheted up several notches. 

And that was all hard. I spent a big chunk of that week sleeping most of the night in my recliner because it was easier to breathe that way. 

The testing included another tilt-table test, but also a bunch of other stuff including testing my ability to sense both cold and vibrations in both hand and foot, a sweat test and a couple tests that monitored heart rate and blood pressure during both rhythmic breathing and something called a valsalva maneuver. (Boy, did I think my head was going to explode during the valsalva maneuver; it was the one thing that the technician didn't take time to explain to me ahead of time.)

I was toast when it was all over! I should have made arrangements for Scott or someone else to be my driver. At the end, the technician was very leery of letting me drive myself home. I wasn't so sure of it either, but leaving the car at the hospital overnight (i.e. if Scott came to pick me up) would have been pretty complicated. So I reassured Linda, and myself, that it was OK, it was only a few miles home, and I'd be fine. 

I was fine. But I was exhausted and feeling lousy, so of course I got lost, and without my cell phone or a working GPS, it meant I spent almost an hour getting home from what should have been a 5- to 10-minute drive. 

Why didn't I ask for help? I'm not sure. Tuesday's adventure definitely made me more aware that sometimes it can potentially be a safety issue if I simply try to push my way through pain, fatigue and brain fog. 

It's a lifelong process, I guess, to learn how to be comfortable both asking for help and receiving it. I'm better about it than I used to be, but clearly still have a long ways to go.

I'm lucky, though, that I have a husband who willingly helps me on a daily basis in so many ways. And Ellie's at the age where (most of the time), she's thrilled at the idea of helping. And I have local friends who are supportive, too, as well as my online support community and extended (albeit long distance) family.

Could be a lot worse off! :-)

This post was written as an offering for the April 6 edition of Patients For a Moment, which will be hosted at Possibilism. Entries can be offered through midnight April 3.