Wednesday, September 29, 2010

Laughter Can Be the Best Medicine

Sometimes I spend too much time worrying, crying, yelling, or sleeping to take time to laugh. Yet laughter can be the best medicine. Remember Robin Williams in the movie Patch Adams? It was about a real-life doctor who used humor to heal his patients. I think some doctors I've met along my journey could learn a thing or two from him. But that’s a topic for another time.

Research studies have shown that laughter can have a positive effect on one’s health. In a nutshell, laughter increases the bodies “feel-good” hormones much like exercise, but much easier to do!

Here’s a short list of what makes me laugh:

#1 The silly antics of my kids (some intentional, some not) Like when my son once wore two pairs of underwear to his grandma’s house for a sleepover, or when my daughter counted “one . . . two . . . ten” while playing hide and seek. Sometimes they make funny faces like all kids do, or they crack me up without even knowing what is so funny. When I hear them giggle, laugh, and sometimes even snort – it makes me feel happy, because they are happy.

My kids bust out into laughter when a person loudly blows his nose in public. I'm not sure why, but this is really, really funny to them. My husband thinks this is hysterical as well. It must be because he is a little kid trapped in an adult body.

#2 The goofiness of my husband (sometimes intentional, sometimes not) Like when he uses a poor British accent to imitate the voice of Charlie from the cartoon, “Charlie and Lola” or when he honks and waves at people that we pass by while traveling down a country road. Most people wave back, how funny is that?

Often, my husband makes me laugh in a “shake your head” sort of way – as in why did you just do, say, or think that? Much to my dismay, he also has the annoying habit of laughing at inappropriate times like when we are having an argument or when he whispers something silly to me during church. Despite all that, he does make me laugh nonetheless, which is a “good thing” as Martha Stewart would say.

All three of them can be quite the comedians - keeping me laughing even at times when I just don’t feel like it. Think about what makes you giggle, chuckle, smirk, or laugh so hard you just can’t stop. Maybe it’s a one-liner from your favorite TV sitcom or movie, or an inside joke shared with a friend. I recently re-connected with an old high school friend via Facebook. His goofy postings and emails always make my day a little bit brighter.

So thank you hubby, kids, friends, and others who make me laugh and smile because . . .

“The most wasted of all days is one without laughter.” e.e. cummings.

Wednesday, August 18, 2010

Doing the limbo!

I met with the lung transplant doc for a four month follow up visit this week, and no big surprise - it's still too early for me to be considered a candidate. However, if and when, the time may come for me to even be listed, other complications related to scleroderma may hinder this possibility in the future.

I have very mixed feelings about this. Yes, I am happy that I am considered "too healthy" right now, but it doesn't negate the fact that I have a chronic, potentially debilitating illness ticking away inside me. This makes me sad, frustrated, and angry all over again. A perpetual state of "wait and see." Limbo, if you will.

When I first received a diagnosis more than six years ago, the doctors kept confirming I had scleroderma over and over again, but they didn't really offer a solid treatment plan except some medication for the various symptoms. And of course, the wait and see approach.

In frustration, I finally asked one doc in a not-so-quiet voice (OK, I was yelling) "Yes, I know I have scleroderma, but what are you going to do about it?"

Fast forward to the present, and I have these feelings all over again. Yes, I am stable, but I am by no means "cured." I have to take a ton of medications each day, use supplemental oxygen at night and with activity, visit at least one (or maybe more doctors) each month, go to pulmonary rehab twice per week, and worry that I won't be around to see my children grow up to be adults.

I try to live one day at a time, but the time bomb tick, tick, ticks, away in the back of my mind. "When will my lungs finally give up, when will all the meds stop working, what new medical problem will be caused by this horrible disease?"

It's really hard not to have these feelings. It's like when the limbo stick is very close to the ground, and you wonder if you can make it underneath.

Sunday, July 25, 2010

I think I had blogger's block, but I'm back with an update


It's been quite some time since I've written a new post. So here goes nothing.
The past four months have been quite busy around these parts. I have transitioned to a new team of doctors, except for a GI guy. Still need to set up that appointment. I had quite a few tests and doctors visits during this transition period, so I put that off for a bit.

As a result of all that poking and prodding, we have learned that my pulmonary pressures have decreased, and that my condition is stable right now. So something is working - meds, exercise, oxygen use, attitude - doctors can't say for sure - probably a combo of everything.

We've also learned that I'm "too healthy" to be considered for a lung transplant at this time, and that my acid reflux is not really as bad as it feels! I'm also a bit anemic so iron supplements have been added to my daily meds, and I have very little to no motility in my esophagus (cue the GI doc) so there are still some unresolved issues. But all and all I feel pretty good.

On the home front, I have enjoyed summer break with the kids. They have kept me busy as their personal chauffeur driving them to their various activities like gymnastics, soccer camp, and swimming lessons. We've been sleeping late, eating ice cream, going to the library, etc., etc. - typical summer stuff.

Ah, summer my favorite season! Love it!

Friday, March 12, 2010

Contemplating Fairness

The concept of fairness has been very much on my mind this week.

Really it’s been on my mind off and on since my diagnosis six years ago. Mostly, I have thought about fairness in terms of “why me?” Being chronically ill is so unfair to me, to my husband, to my children, and to my family and my friends, too.

But the fact of the matter is many things in life are unfair. Bad things happen to good people. Unexplainable things happen to innocent children. People face adversity. People face day to day struggles.

Last weekend, I got together for dinner with some friends from college. I gave them a brief update on my health. Sometimes I do not like to talk about it in much detail because I don’t want to be a downer. I’d much rather just eat, drink, talk, and laugh.

After wrapping up an enjoyable evening with hugs and goodbyes, one friend quietly said to me, “It just doesn’t seem fair.” The comment actually took me by surprise a bit. “No, no it doesn’t,” I replied with just a hint of tears forming in my eyes.

Although I sort of shrugged off her comment, it stuck with me all week long.

And she is right. It doesn’t seem fair. But really, am I the only one in this group of friends being dealt an “unfair” card?


Another friend with us that night shared her triumph of having just completed her last radiation treatment for one cancer cell found in her breast. Another, who will have her first baby at age 43, had just been diagnosed with gestational diabetes. She also has been ordered on bed rest for other complications related to her pregnancy. A third friend who could not be with us for dinner that night due to suffering a bout of pneumonia is in the midst of divorce proceedings.

These bad things are happening to very good people. Is it fair? No. Can it be explained? Not by me.

Ironically, fairness was the Character Counts topic at my kids’ school this week. To a kid, fairness seems so simple - Take turns. Share. Play by the rules. Listen to what others have to say. Treat people how you would like to be treated. Keep an open mind and be reasonable. Consider other people’s feelings. Fairness does not mean equal, but that each person gets what they need.

Hmmm, sounds so easy. Not really. For me, perhaps one of the most difficult things about fairness is simply accepting the fact that life is not fair. It’s trying to move on from “why me?” to “why not me?”

I’m not there yet.

Friday, March 5, 2010

Breaking up is hard to do

I am doing it.
I am seeking a second opinion.

I am questioning the care and advice given to me by two of my many doctors.
I have seen these doctors for more than five years, so that's why it’s a bit hard.

It’s like a break-up.

My husband and I have been contemplating this change for some time now.
But what we needed was a little push. OK, a big push!

In fact, what we really got was three pushes. And lots of little nudges, too.

One push came from my local pulmonologist - let’s call him Dr. N. He joined my medical team last year. I like Dr. N and trust his opinion very much. He is honest and proactive. However, he is not an expert on scleroderma, and he doesn’t claim to be.

So it’s almost like a third opinion because Dr. N said it was time for a second opinion.

Why do we need so many opinions? Because it appears as though the pulmonary fibrosis in my lungs is a bit worse than last year. We were advised that I need to change to a stronger medication - one with potentially adverse effects, and maybe some unpleasant side effects as well. We were told there is no alternative.

The second push stems from our frustration with my long term doctors’ “wait and see” approach. Let’s say they seem to be more reactive, than proactive. This approach may be OK when a health problem is not very serious, but doesn’t seem quite right when the condition is both serious and progressive.

The third push came from my friend at Pulmonary Rehab. She has scleroderma, too. My friend recently changed to a different group of doctors, and has been urging me to do so for many months now. She even offered to drive me to appointments. She’s a great person.

The little nudges came in various forms. Like when one doctor did not show up for a recent appointment without much of an explanation from him or his office staff. Or when it took more than a month for these doctors to review a recent CT scan, and compare it to last year’s scan instead of one from six years ago. This review came only after contact by me inquiring about the scan, and pointing out that it had not be compared to the most recent.

Another nudge is what me and my husband call “the hurry up and wait” situation. We do our best to get to my appointment 15 minutes before it is scheduled (as they suggest on their confirmation voicemail) only to do so, then we wait, wait, and wait to see the doctor. Sometimes for over an hour!

So it’s time to move on.

We hope that this change will bring a fresh perspective on my care and treatment.

We also hope that I will receive the very best care possible. Without the wait of course.

But most of all, we hope that this change will bring us HOPE!

Friday, February 26, 2010

Contest Crazy

For some reason, I have been entering contests lately.
Contests for cash. Contests for prizes.

I even bought a Powerball ticket for my husband for Valentine’s Day.
He didn't win.

I am not sure why I’ve been so obsessed with contests in the past few months or so. Maybe it’s the hope or promise of something better coming our way.

Maybe it’s because most contests are just so darn easy to enter – just fill in some information and click.

Maybe it’s because we are on a very, very tight budget and a mound of money would come in quite handy around here.

I think winning it big would be terrific.
But even winning it small would make me smile.

My daughter would love, love, LOVE for me to win a trip to New York in a contest I recently entered. And I would love, love, LOVE if she won the Old Navy SuperModelquin contest.

So please vote for her at

Even though winning the SuperModelquin contest is a long shot, spending an hour or so at the Old Navy with my daughter (without her little brother) was a lot of fun.


(Except for the 50 bucks I spent on some spring clothes for her and her brother)

Vote now, vote often.

Wednesday, February 17, 2010

And a rush came over the room . . .

Go, go, go.

It seems as a society we simply cannot slow down.

Rush here, rush there.
Do this, do that.

Frankly, I’m quite tired of all the rush.
Truthfully, I just can’t keep up.
I have to move at a much slower pace than the rest of this hurried world. Simply so I can do just one thing which is


Rushing here, rushing there takes my breath away.
It makes me frustrated.
It makes me nervous.

Take for instance a recent shopping trip to a well-known discount department store. Now I ordinarily do not spend too much time shopping at big stores or malls anymore because it usually is just too exhausting for me. But on Monday I had nearly two hours to kill while my daughter was at a birthday party nearby, and my son had some money burning a hole in his Thomas the Tank Engine wallet so off we went.

Luckily, I walked about the store at my own almost turtle-like pace. Then, I rested while my son checked out all the toys.

It is at the check-out where I felt that I just wasn’t cutting it in the sport of discount department store shopping - as in a “hurry up lady, you’re not moving fast enough for us” way.

First, the not-so-friendly cashier seemed miffed that I wanted my son to pay for his items with cash, and then I would pay for mine with credit. I guess that would have slowed her down in the Olympic event known as discount department store cashier cross.

Next, she waited impatiently as I tried to dig some change out of the child-sized Thomas wallet. This is not an easy feat for a person like me who sometimes has trouble using my fingers to do simple tasks like opening a jar, buttoning children’s clothing, or pulling apart tiny Lego pieces.

Then, before I could even gather up my bags and put my credit card away, the cashier was moving on to the next customer who had not so graciously placed her eco-friendly shopping bags on top of my stuff. Not that I have anything against eco-friendly shopping bags. We use them from time to time as well. I just didn’t want those bags on top of my stuff, or in my space, urging me to hurry up and move on already.

Now, like the not-so-friendly cashier, I was miffed. I even mumbled something to the cashier and the eco-friendly shopping bag lady as in, “Can you give me a minute to finish? I even accidentally knocked one of her bags off the counter when I gathered up my stuff. (I swear it was an accident) But both the cashier and pushy bag lady didn’t seem to care. They both just looked at me like I was crazy. As in a “hurry up lady, you’re not moving fast enough for us” way.

I have seen that look before. It happened one time when a fast-paced couple nearly plowed me over while I was walking s l o w l y while wearing my portable oxygen on my way out of the hospital after pulmonary rehab. On that day, I did not mumble. I said loudly, “You don’t have to walk right on top of me!” I am in a hospital. I am wearing oxygen, for goodness sake. Slow down. I don’t even recall if they said they were sorry. They just went on their merry, hurried way.

The frantic pace of the outside world is not only to blame for my dislike of all things fast. Many times, I feel rushed in my own home or with my own family. Hurry, get breakfast, lunch, or dinner on the table. Hurry, get the kids out the door or they will miss the bus. Hurry, sign this paper, make a phone call, fold the laundry, check this math paper. Hurry, get in the car so we won’t be late.

Hurry, hurry, hurry.

Sometimes my family needs a lesson in taking a less-than-lightening pace. I remind my kids that they need to slow down because mommy can’t move so fast. I remind my impatient husband that dinner won’t be for awhile yet as he paces about the kitchen. I remind my 70-year-old mother to stop walking so fast when we are together.

Sometimes even me, myself, and I forget that we can’t keep up with this lickety-split world. I have to remind myself to slow down, to stop, to relax, and to take a deep breath. I have to give myself at least one hour to get ready in the morning, instead of just 45 minutes or less. I have to remind myself to do one or two things at a time, not three, four, or more. I have to rest if I need to rest.

Rest, Rest, Rest.

Slow down, slow down, slow down.


Ahhhhhhh . . . that’s more like it.