Wednesday, October 27, 2010

PFAM Contributions Sought on "What Do You Look For In A Doctor?"

Please note I've corrected the publication date for this edition of PFAM to Wednesday, Nov. 10. Submissions are due by midnight Sunday, Nov. 7. Thank you!!

I almost went to the Multiple Sclerosis clinic at the local medical school a year or so ago. But it was taking forever to get in with them, and I ended up seeing a "regular" neurologist instead, who felt pretty confident I don't (yet?) have MS.

Because of my developing and ongoing symptoms that appear to be neurological, my internist persuaded me that she should refer me to the "comprehensive neurology" department at the medical school. They're the neurologists who do the intake and then, when appropriate, refer patients to the more specialized neurology clinics.

It took a month after my internist faxed over 60 pages of records about me for them to decide to accept me as a patient and call to offer me an appointment. (Yep, they actually don't accept all potential patients.) I was surprised when it turned out that they could see me in two weeks (Nov. 3) -- that just seemed so fast!

But when I got the packet of materials in the mail last week, I saw that the doctor I was assigned to was in the MS clinic. I politely called and explained that I thought there had been some confusion between my current referral and the one that had been put in about 18 months ago because my internist had told me she wanted me to be seen in the comprehensive clinic. The woman looked up my file in her computer system and said, no, it wasn't a mistake. My case had been discussed in depth at a staff meeting and they decided the MS clinic was the place I needed to be seen. Well, OK, it's good to know it wasn't a mistake, I guess. (My internist was pretty mystified too.)

So I'd already known the doctor I was assigned to is male, which is not my preference when all things are equal. But I was kind of flabbergasted to discover he graduated medical school in 2005 and was about a year into his post-residency fellowship. 

There's a trade off when it comes to doctors' experience levels. Older, more experience docs have seen many more patients and have ideally gotten very good in their chosen field. New docs are fresh from medical school, where they learned the very latest, newest theories, tests and diseases, and they haven't gotten jaded yet. There's benefits to each, and new docs have to get their experience somewhere if they're ever going to be experienced docs. 

This all got me thinking about what I want in my ideal doctors. And there are qualities I need to see in the first visit or two, or I find a different doctor. Here's what I want:

--An open-minded doctor who listens well and appreciates an intelligent patient who asks a lot of questions and does some of her own research.

--The ability to hold a conversation (years ago, I had a doc who literally would run out of the room to avoid questions) and to at least appear to care, by which I guess I mean she shows empathy.

--These days, I look for docs who are willing to take on challenging cases, who perhaps even like them. It's clear I need someone who won't give up easily on figuring out a puzzle.

--Personality and good bedside manner mean more to me than getting the smartest guy in the country. I believe doctors who have empathy for their patients do a better job in the long run. (Although I wouldn't refuse to see the smartest guy in the country if he also met my other criteria! Being smart doesn't rule out empathy and communication.)

--Doctors who aren't afraid to say they don't know what illness I have and are willing to work with other specialists to try to figure it out. There are way too many doctors out there who accuse their patients of being psychosomatic rather than work hard to figure out the underlying problems. (And I'm lucky -- I haven't had that happen to me. But I've met way too many people online who had that happen, sometimes multiple times, before they finally found the doctor willing to look further and ended up with a diagnosis that wasn't psychiatric.)

I know everyone has their own criteria that they look for when needing a new doctor. So for the next Patients For A Moment blog carnival, which I am hosting here on Nov. 10, I'd like to hear what you like in a doctor and, just as importantly, what you don't like in them. If you've got an awesome doctor, blog about what makes him/her the perfect fit for you. I'd also love to hear about those awful doctors that we should all avoid -- what makes them so bad? What exactly did you hate? If you're still looking for Dr. Right, what's on your criteria list?

To participate in the blog carnival, please send the following no later than midnight on Sunday, Nov. 7 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 

Thank you!! And don't forget to come back on Nov. 10 to see the contributions!!

Meanwhile, go check out the current edition of PFAM over at Glass of Win, where Rachael asked folks to write about advice they would like to give medical students and/or professionals. There are some great posts worth your time to read!


Sunday, October 17, 2010

Wishing For The Best, Even When I Don't Know What's Best

I haven't mentioned it here much, but those who know me in "real life," or even just on Facebook, know that my almost 6-year-old has had recurrent urinary tract infections for the past couple years. 

She's gone through the typical series of tests, from a pelvic ultrasound to a voiding cystourethrogram (VCUG), and we've been relieved to find out that her plumbing is normal. I've been pleased with our pediatrician, who's not an alarmist and doesn't hurry to do invasive testing. But she also tells me when we reach the point that she would do the test(s) on one of her four kids, and that's the guidance we've been following. 

Showing off a cute outfit, including the matching hair bow
Tomorrow, Ellie is going to have an MRI to rule out a tethered spinal cord. An MRI doesn't usually count as an invasive test, but Ellie is young enough that they prefer to use general anesthesia to ensure there's no movement to blur the images.

Meanwhile, she is taking a daily prophylactic dose of antibiotics in the hopes that it will help get rid of any lingering bacteria that wasn't wiped out on the latest round of antibiotics. 

You may remember that I was diagnosed with a tethered spinal cord a few years ago when I had an MRI hoping for clues why my back wasn't improving after a car accident left me with severe pain. Tethered cords can be hereditary and are considered a mild form of spina bifida. Interestingly, after I was diagnosed with a tethered cord and notifying family members, I learned that my mom was diagnosed as an adult with a mild case spina bifida when she had an MRI looking for a cause for her back/neck pain.

So I'm a little torn between hoping Ellie has a tethered cord, which can be fixed surgically and could explain her recurrent UTIs as well as other bladder and bowel issues, and hoping she doesn't have one, because the thought of my baby needing surgery is scary and I'd hate to put her through the pain and trauma of surgery.

What's a mommy to do besides worry? I hope you'll join me in thinking positive and hoping for the best possible outcome, whatever that may turn out to be.   

Thursday, October 14, 2010

Still Waiting ... But Thankful All The Same

I wrote my first blog post three years ago today, where I talked about "wait[ing] for my doctors to stick a label on me and finally start treating my illness instead of just giving me pain killers."

You know what? I'm still waiting. (Yeah, I know -- big surprise, eh?) I've seen even more doctors, had even more tests, but I'm still a medical mystery. Some things never change, I guess.

I discovered a few weeks ago that I apparently missed the window of opportunity to go to the Mayo Clinic and not have to pay huge out-of-pocket fees. Apparently our health insurance carrier in 2009 would have covered it as in-network, but our 2010 carrier doesn't. And unfortunately, for the first time in four years, we're going to have the same carrier for 2011 that we have this year. (Seriously, my husband's employer changed insurance carriers three years in a row, which makes life confusing when you have to change specialists just to stay in-network.)

But I'm digressing.

I started blogging Oct. 14, 2007, because I felt isolated and overwhelmed when it became clear that what started in June 2007 as bilateral pneumonia had morphed into something else, and that something else wasn't playing by the rules of acute illness: It wasn't going away any time soon. 

Before that, I hadn't ever followed any blogs. I knew what they were, but wasn't particularly interested in them and felt like I was too busy as a stay-at-home mom to a toddler to spend a lot of time reading other people's musings. It was hard enough to find the time to keep up with personal email and updating family and friends on Ellie's latest accomplishments and photos. 

But I needed to know what other people were doing, how they coped when their lives changed and they found themselves dealing with chronic illness. I also hoped that by reading other people's blogs, maybe I'd find someone whose diagnosis matched my symptoms and I could take information back to my doctor.

I googled blogs about "chronic illness", and the first one that came up was Laurie Edwards' at A Chronic Dose. Her health problems had been lifelong, but I found her posts about coping and having a life that wasn't centered around chronic illness to be inspiring. Reading through her old posts, in fact, inspired me enough to start this blog. I expected this blog to be primarily a means of keeping my extended family updated on what was happening with my health. But as someone who has journaled off and on since childhood (got my first diary at age 9!), I also knew that the act of writing is a powerful thing for me as a way to express my emotions and frustrations. 

What I didn't anticipate was the sense of community that I would find in the blogosphere, the empathy and knowledge that I am not alone on this path I never chose. And for that, I'm grateful. 

Thank you -- all of you, and especially those of you I may not have met face-to-face yet, but I consider friends all the same. You've helped deal with the guilt of putting my daughter in daycare. You've helped me deal with the frustrations of dealing with doctors and insurance companies. 

I don't feel as isolated any more, and haven't for a long time. Thank you for reading. Thank you for responding to my posts and sharing your own stories with me. I hope y'all will continue to do so, because I plan to be blogging for a long time. (Although I really hope I eventually get a diagnosis so there's more my doctors can do for me besides treat my symptoms and give me pain meds.)

Wednesday, October 13, 2010

Check Out The Latest Patients For A Moment Blog Carnival!

The topic was Facing Your Fears, and Selena did an awesome job on the latest edition of Patients For A Moment (PFAM) blog carnival over at Oh My Aches and Pains! Please go check it out, and visit all the contributors to discover some wonderful blogs that may be new to you. 

And come back here tomorrow to help me celebrate my blog's anniversary. :-)

Saturday, October 9, 2010

What Was I Thinking?!

Or, as an alternate title for this post: Signs That I'm Having a Bad Week:

---My "normal" interval between showers stretches beyond three days. (Before Illness, I showered and washed my hair daily, even when I had a newborn. These days, I'm doing well when I manage the every-three-days shower.)

---It hurts too much to hold a book, which pretty much kills my favorite pain distraction. It's just not the same for me to listen to an audiobook or podcast or watch TV.

---I find myself canceling and/or rescheduling doctor appointment because I'm "too sick" to get dressed and get myself to the doctor's office.

---I find myself having to pause on the stairs, and the more times I have to pause, the worse I am. When I can't go more than three stairs without stopping, it's a really, really bad day.

---I find it challenging to be awake for more than three hours at a time. When I have a flare, it feels like my brain just shuts off and I have no choice but to sleep.

---Gravity intensifies (or seems to) and moving takes more effort than it should. Sometimes, even just holding my head up or my eyes open feels like a huge effort.

---I can't focus on anything, whether it's following a convoluted description by Ellie of her day or watching my favorite TV shows.

It's been a rough week at the end of a rough month. Thanks to Jewish holidays, there were way too many long weekends during September, and even though Scott is the one who deals with the lion's share of supervising Ellie and keeping her busy and entertained, it all just took its toll on me.

That was topped by overbooking (by my abilities) the four day weekend Sept. 30-Oct. 3. Scott's parents came to visit for the first two days, and I fear they feel like they barely saw me because of my sleeping through lunch both days. But I've learned that while I'm capable of waking up before noon, it generally means I have to shut down and sleep the afternoon away. And if I get up when normal people eat breakfast, I'm turning into a zombie and having to head to bed well before lunch. :-(

On Saturday, I'd scheduled a swim playdate with one of Ellie's classmates, and although I didn't really feel up to it, I went along to sit on the sidelines and watch. I wasn't sure if the moms would be comfortable if I sent Ellie and Scott on their own, plus I like them and wanted to get to know them better. If it had stayed a normal playdate, which usually doesn't last longer than a couple hours, I probably would have done fine. But the girls were having fun and wanted to watch the new Tinkerbell movie, so we ended up going over to their house after the swimming and ended up ordering pizza in for dinner and staying until we had to get Ellie home for bedtime.

The next day, Ellie had a swim birthday party to attend for a different classmate, and luckily Scott was happy to take her without me. But some good friends were having an apple harvest party later in the day that I felt like I couldn't resist going even though I knew I'd end up paying for it in the end. 

The apple harvest party was fabulous (just like the hosts :-), and I took one of what I like to call my "peppy pills" (Adderall, an amphetamine-based stimulant usually used to treat attention deficit disorder but in my case prescribed for fatigue.) The thing about the peppy pills is that while they help provide the energy I need in the present, they also allow/encourage me to ignore my limits. And that always comes with a penalty to pay in the days that follow. 

And I spent this week paying that penalty, with pain levels through the roof and sleeping closer to 18 hours a day instead of my "usual" 12. And it's Friday as I write this, with another weekend beginning, and I'm still working on an energy deficit that feels like it's the size of a planet. 

Sometimes I feel a little like Alice in Wonderland -- I take a pill to make me peppy, and then I'm too wired to sleep properly that night so I take another pill to help me sleep. My pain levels are high, so I take a pill for the pain, which helps me feel well enough that I do too much and then when the first pill wears off, I'm in a worse place than I started. I make jokes on Facebook about better living through chemistry (pharmacology, at least), but is it really better? 

Sorry -- this turned into more of a vent than I intended. I apologize if I'm sounding whiny; I do know that I have it much better than many other people out there. It's just ... hard, sometimes. 

I think bed is where I need to be, so I'll wish you all a good weekend, and thanks for letting me vent (and hopefully not attacking me for doing so! :-). 

*Please note that this post's Amazon link is an affiliate links, and I will earn a small commission if you follow a link or click on the Amazon box in the sidebar and buy something, but it won't cost you anything beyond the normal price. I haven't ever actually made any money off my blog's advertising or my Amazon links, but it's fun to think that I might someday. :-)

Wednesday, October 6, 2010

(Almost) Wordless Wednesday

Our 80-gallon aquarium, one of three we started since last spring. Endlessly fascinating to watch, if not always relaxing to watch.

Friday, October 1, 2010

Things That Go Bump In The Night

Selena at Oh My Aches and Pains, the next host for the Patients For A Moment blog carnival, asked people to blog about the parts of having a chronic illness (or dealing with it) that frightens them, and how they cope(d). (If you're interested in submitting your own post on the topic, visit her blog to get the details, but submissions are due by the end of Sunday, Oct. 10.)

I try hard not to focus on the things that scare me, especially as they relate to my chronic health issues. I'm a worrier by nature, and it's way too easy for my worrying to spiral into anxiety, which of course just makes everything worse. 

But I think there are three things that scare me the most:

1. Intense new symptoms. Let me be honest here -- every time I get new, seemingly unrelated, symptoms, I freak out a bit. And since it usually seems to happen in the dark of night, I seem to end up in the emergency room more often than I'd prefer, especially if it's frighteningly intense pain that I can't get under control with pain meds. That's happened twice this year, in January and again in June. The latter ended up requiring my gallbladder to be removed (and I'm so happy that it seems to have been a real resolution to that incident) in late July. The former developed into bloody diarrhea that left me completely panicked, but by the time I had my colonoscopy two months after onset of symptoms, there was no sign of the cause of the problem. Have I mentioned how much I hate unanswered mysteries? 

2. Flare ups. After more than three years into my mystery illness, I've noticed a bit of a pattern, although it doesn't seem to stop frightening me when it happens. Essentially, weird things happen each winter/spring, getting progressively worse so my world shrinks to my recliner, my bed and doctor appointments. Many, many doctor appointments, that usually involve a new round of tests. I think it scares me because I never know how bad my pain levels will get and whether it's going to end up being my new "normal." Winter/spring weirdness turns into summer misery (I melt in the heat), and I panic, feeling like my pain levels will never get back under control (and "under control" is essentially wherever my coping levels are, since the pain never goes away entirely and I've mostly given up on the idea that it ever will). Then summer turns into autumn, the weather cools, and either I feel better or I've gotten used to the new normal and I once again feel like I'm coping.

3. I think the scariest thing, however, is worrying about Ellie, and how having a sick mommy affects her life and the way she sees the world. We were headed home from visiting some friends in the opposite part of the city from us, and as we passed through downtown, I pointed out the building I used to work in before she was born. (I never intended to be a SAHM, but the economics of two working parents didn't make sense when looking at the money I'd be bringing home versus the daycare expenses. And, well, I liked it, and it had been a long time since I'd enjoyed that job.) "You used to work?" she asked, with utter disbelief. And like so many of you other sick moms have shared with me, she has no memory of the 2.5 years she spent at home with me before I got sick. As far as she's concerned, I've always been on the periphery of her life.

For the first two, I cope by trying to remind myself to take each day at a time. Yes, when I'm so flared that I can barely feed myself because it hurts too much to hold a utensil and I'm sleeping 18 hours a day or more, it's easy to panic and think "This is how it's always going to be!" And that's terrifying. Who can think about getting through 40+ years like that? So I try to focus on getting through the next 10 minutes, the next hour, the next day. And that helps. A lot. 

At times, I'm also a fan of better living through chemistry. I started anti-depressants after it became clear that this wasn't something that would go away in days or weeks, and I've been on them for almost three years now. (I used to think it was inappropriate to use anti-depressants for situational depression that made sense. I mean, who wouldn't get depressed when they get sick and don't get better? It's normal. And yet, I now think that if the depression lingers, even if it's normal and situational and (in theory) temporary, suffering through it doesn't really help anyone. And why suffer if there's something you can do about it?) And when I get the crazies from the periodic Prednisone courses that are the only things that make the pain go almost entirely away, I have both Klonopin, an anti-anxiety med, and Ambien, a sleep aid.

For the third? I haven't really found a way to overcome it other than to continue to visit doctors and undergo tests and not give up on finding a diagnosis and, hopefully, a treatment for my mystery illness. One thing I can do for Ellie is to teach her to persevere, even when it sometimes seems hopeless. I also try to focus on enjoying the moments with her, and not worrying too much about the ones I can't be there for. Like for the trip we took to Disneyland last spring: I chose to go along for the trip even though I knew I'd end up spending the bulk of time in the hotel room sleeping or resting. I very seriously considered saving the money and sending Scott and Ellie to Disneyland alone. But if I had, I would have missed everything instead of much of it. Because I was there, I got to share in the magic with Ellie, and that's something precious. She's never going to be 5 years old and believe in Disney princesses again. But I got to be there with her, even if it was only for small bits of the days. And that's something for both of us to remember and hold on to.