Monday, February 28, 2011

Patients For A Moment: Call For Submissions: Guilty Pleasures

Guilt is a part of life, a bigger slice for some of us than others, but we all have things we feel guilty about. I have another post coming up about the more typical guilty feelings I have as a parent with chronic illness. 

But I'm hosting my favorite blog carnival, Patients For A Moment, on March 9, and I'd like to hear about people's guilty pleasures, the occasional good thing that comes out of being chronically ill. 

For me, I think my guilty pleasure is how much reading I'm able to do. I've always been a bookworm, and especially while I'm taking this break from pain meds, reading is my favorite distraction from much of the pain. Sometimes it hurts too much to hold a book, and my retention isn't what it used to be, but for the most part, it's a reliable way of escaping from my life and the way I'm feeling physically. 

I've never had as much time to read as I do these days. And if I ever get better, I'm probably going to miss being able to spend such a big chunk of my time with my nose in a book. 

And I do feel guilty sometimes about how much time I spend reading when there are things that need doing. It doesn't feel productive to be reading books for pleasure. And yet it's one thing, possibly the only thing, that being sick hasn't spoiled. 

What kind of guilty pleasures do you have that have resulted from your chronic illness? Did you get a hot tub to ease sore muscles/joints but use it more than necessary? Do you have someone come to clean your house and revel in the shiny kitchen and bathrooms that you didn't have to scrub? Big things, little things -- share them all, or just one.

To participate in the blog carnival, please send the following no later than midnight on Sunday, March 6 to me at

1. Your name (as it should appear)
2. Your blog’s name
3. Your post’s title
4. Your post’s URL 

And please don't forget to come back and read everyone's contribution on March 9!

Thursday, February 17, 2011

Please Don't Tell Me I Glow!*

I know people mean well when they tell me how good I look and that it must mean I'm feeling better. 

But really, are so few people familiar with the concept of an invisible chronic illness? 

You know it's bad when I was happy for my internist to greet me today with, "You look awful -- you're pale, you have dark circles under your eyes, you look exhausted!" 

My reply? "Good! I'm glad I look as crappy as I feel!"

I told her about the glucose tolerance test, and she said my incredibly low result means I have functional hypoglycemia. Which doesn't really mean much because I've been diagnosed with hypoglycemia on and off since college. I already know that I need to eat frequent smaller meals and always have extra (healthy) snack food around for those times I'm unexpectedly long between meals. 

Meanwhile, I have an EMG (nerve conduction test) with the new neurologist on Friday in the continuing effort to figure out the cause of my weird sensory issues. 

*I went to a kid birthday party on Saturday and a mom I hadn't seen since last June told me I was glowing. I wanted to (but didn't) tell her that the last time someone told me I was glowing was when I got contaminated at the Hanford nuclear reservation in the mid-90s. (Which actually did happen, although they called it "crapped up" rather than contaminated.)


Saturday, February 5, 2011

A Cause To Join

I'm lucky to have a husband whose employer offers health insurance as a benefit, and a fairly good policy even if it does cost us nearly $1,000 per month for family coverage. Even with insurance, our out-of-pocket costs (ranging from co-pays to things that aren't covered by our policy, like my weekly acupuncture appointments) in 2010 were just shy of $9,000. And I know way too many people, who also have insurance, who had higher out-of-pocket costs. 

Then there are the people who don't have insurance. Maybe their employers don't offer insurance. Maybe the poor economy has left them out of work and therefore uninsured. And of course, I know way too many people who are too sick to work and lost their insurance when they lost their jobs, but haven't yet qualified for Social Security disability and Medicare. If I were still single, that's the position I'd be in, and for me, that's the stuff of nightmares. 

Below, I'm sharing a LiveJournal post from author Laura Anne Gilman, who's also known on LiveJournal as suricattus. I came across it initially in a post by one of my favorite authors, Sharon Lee.


There is a move afoot in the nation -- driven by the GOP -- to repeal the new health care laws, to protect corporate interests, to defend against fear-mongering (and stupid) cries of "socialism!", and to ensure that people are forced to choose between keeping a roof over their heads or getting necessary health care.

This movement is killing people.

Think I'm overstating the fact?

Ask the friends and family of writer/reviewer Melissa Mia Hall, who died of a heart attack last week because she was so terrified of medical bills, she didn't go see a doctor who could have saved her life.

From another writer friend: One person. Not the only one. That could have been me. Yeah, I have access to insurance -- I live in New York City, which is freelancer-friendly, and have access to freelancer advocacy groups. Through them, I can pay over $400/month ($5,760/year) as a single, healthy woman, so that if I go to the hospital I'm not driven to bankruptcy. But a doctor's appointment - a routine physical - can still cost me several hundred dollars each visit. So unless something's terribly wrong? I won't go.

My husband worked for the government for 30 years. We have government employee (retired) insurance. It is the only thing of value he took away from that job. His pension is pitiful. He still works part time. My writing income has diminished drastically. Our combined income is now less than what it was before T retired fifteen years ago. Inflation has diminished it further. In the last 30 days I have racked up over $8000 in medical bills for tests and the beginning of treatment. Our co-pay is 20% after the deductible. And there is more to come. Our savings are already gone. I have the gold standard of insurance and I still can't pay all the medical bills.

Another friend lost her insurance when her husband lost his job. She couldn't afford medication and ended up bed ridden for three months at the end of over a year of no job and therefore no insurance until he found work again.

It's our responsibility. All of us, together. As a nation.

ETA: Nobody is trying to put insurance companies out of business. They will always be able to offer a better plan for a premium. We simply want to ensure that every citizen - from infant to senior citizen - doesn't have to choose between medical care, and keeping a roof over their heads, or having enough to eat.

We're trying to get this to go viral. Pass it along.

It's me again. I don't consider this a political post, although I know some will disagree with me. I've been upfront for years now about my belief that the U.S. insurance system is breaking this country. Want another view? Check out this post by a Portland physician, who says it's costing us $350 billion per year to keep our private insurance system. 

Thanks for reading. I hope you will consider contacting your representatives in Congress and reminding them that affordable health care isn't a partisan issue and it's something we all need, no matter what our politics are.

Too Much Of A Good Thing?

I saw my GI doc on Friday to discuss the flare of GI symptoms that started on new year's, and he had an interesting theory: Apparently, people sometimes get too much of the "good" bacteria in their intestines, and it can cause similar symptoms to having the bad stuff. Who knew?

He said there's a test that can be done by analyzing the patient's breath after administering an enzyme, but that they normally just go ahead and give a special kind of antibiotic (Xifaxan), which has long been used to treat "traveler's diarrhea." (Not that I've traveled ...)

So I'm taking 550mg twice a day for two weeks. In theory, if the diagnosis is correct, my symptoms will completely clear up within the first week. If they don't, I'm supposed to call and then he's going to require a stool sample. (Ick! I definitely don't want to need to collect one of those!!) and do further testing. 

I told my GI doc that a magic pill that (allegedly) has no side effects and will make me feel better that quickly would be awesome. Then I asked about price, and he said it was the perfect price: Free (thanks to the 14 days worth of samples he gave me). :-) 

Keep your fingers crossed for me that it all works ...

Wednesday, February 2, 2011

Well, That Was Interesting ...

I headed over to OHSU today for a skin biopsy and figured I could have some labs done while I was there, even though the ordering doctor doesn't work there. 

And they were perfectly happy to do it, so I killed two birds with one stone. 

The biopsy involved taking tiny samples of skin at my ankle and my hip, and the pathologist will study the nerves in both to determine if I have small-fiber neuropathy. My limited understanding is that the biopsy can confirm the type of neuropathy, but a negative result does not entirely rule it out. Story of my life. :-)

I also had nine vials of blood collected for a laundry list of bloodwork: HIV, Hepatitis C, Vitamin B6, Vitamin B1, Vitamin E, Copper, 2-hour glucose tolerance test and, as an added bonus, a special test that has to be sent to the Mayo Clinic for processing looking for transthyretin-associated familial amyloidosis. Most of those tests have been run before. I laughed when I saw the HIV test on the list because that was one of the first things they tested me for when I was admitted to the hospital back in 2007. I'm confident that I will continue to be negative. :-) 

So my appointment for the biopsy was at 12:30 p.m. I knew I had to be fasting for the blood work, but didn't have any detail about what they were testing so it was a surprise when I learned I needed to hang around for two hours for the glucose test (which I'd done when I was pregnant). 

As I've mentioned before, I sleep pretty darn late most days, so I got up around 11 a.m. and presented myself at the lab about an hour later. I'd tucked a banana in my purse and had pretzels in the car, and intended to eat the banana on the way to another floor for the biopsy. But no. 

I finished drinking the 75g glucose beverage at 12:14 p.m., went up for my biopsy, and was back in the lab reading Grisham's latest book before 1 p.m. At 2:14 p.m., they took the second sample, and I was peeling my banana before I got out of the lab. 

I got home and had a late lunch (mid-afternoon snack?) about 2:45 p.m., and was reading some email when the phone rang at 4:20 p.m. It was a doctor from OHSU's neurology department (which is where I had my biopsy done) telling me it was very important I eat some sugar right away -- did I have a candy bar I could eat? 

Turns out that my blood sugar level was 49, and anything below 60 when fasting is considered dangerously low. Of course, that 49 was two hours after having the highly sugared drink, which means my glucose levels apparently should have been about twice what they were. 

I have absolutely no idea what all that means, except that it should rule out diabetes. (Diabetes is the most common cause of small-fiber neuropathy, and since I'm overweight, it is a common thing for new doctors to want to rule out on me. But the only time I have high blood sugar is when I'm on high doses of steroids, and as soon as I wean off, my levels come back down.)

I don't expect them to add hypoglycemia to my list of diagnoses based solely on this, but I've been told since college I was "borderline" or mildly hypoglycemic.

Anyway, I was rather impressed by how quickly I got a call from OHSU, particularly since I don't have a treating doctor there currently so they definitely had to pass my paperwork around to figure things out. Wish I'd noted down his name ...

All of today's tests, as well as an EMG and another tilt-table test of my autonomic system that will be done over the next six weeks or so, were ordered by my newest doc, a neurologist with a neuro-muscular sub-specialty. I was referred to him by the multiple sclerosis doc at OHSU that I saw back in November.  

And that's all the news that fit to print ... and it goes without saying that I'll share any interesting lab results when I get them, but the biopsy is expected to take many weeks.

Tuesday, February 1, 2011

Rethinking Concierge Medicine

Strangely enough, I find myself again this week pondering a New York Times health article, this time on concierge medicine.

I remember when I first heard about the concept awhile back, and thought the idea of paying a surcharge on top of the price my insurance company contracts with my doctors was ridiculous. I don't need to pay extra for a spa-like ambiance, nicer receptionists and more up-to-date magazines. And the costs for concierge practices were way out of my budget, tens of thousands of dollars of annual fees just to feel like I was getting to see some exclusive doctor. Yeah, definitely not for me. 

But now I've spent a couple years watching USA Network's Royal Pains series, with a cute doctor who appeals way more to me than House, M.D. And suddenly, concierge doctors who can figure out complicated health issues and treat them on the spot are much more appealing than they used to be, even if the price tag is higher than "regular" doctors.

Of course, now my situation is different than it was back then, too. And I'm a little curious if the concierge practice here in Portland that's almost affordable (Greenfield Health) would even accept someone like me without charging an extra premium. After all, I already routinely get 40 minute appointments with my internist, and it's not unusual for them to stretch to an hour. And my insurance company does pay more for the longer appointments than it does for a normal 20-minute appointment, albeit not as much as seeing two different patients in that time period would.

I know my friend, the Queen of Optimism, has said many times in her blog that she'd happily pay an hourly fee or anything else out of pocket if her PCP was willing and able to spend some extra time talking to specialists and coordinating her care. She has even flown to Baltimore to consult several doctors at John Hopkins at her own expense.  

I'm curious -- have you ever tried a concierge doctor? Checked one out but decided not to do it? What do you think about the concept? Will they keep an "expensive" patient, or would they dump her? (I.e. An expensive patient is one who uses a lot of a doctor's resources, whether it's office appointments, email, or the time it takes to coordinate care among specialists.) 

Meanwhile, it's the time of year again that I most miss being able to sit at a desk for more than extremel short periods. Yep, I'm working on bookkeeping to close out our 2010 finances in preparation for doing both our taxes and our financial aid application, which is due next week. Getting a laptop and being able to use it both in bed and in my recliner saved my sanity, but they don't make it any easier for handling paperwork while on the computer. I'd love suggestions for things like document holders that clip onto a laptop and/or other ways to organize paperwork for use while using a laptop on, well, a lap. Let me know what you've used, and whether it's been successful or not. Thanks!