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.

Monday, February 1, 2010

Just say (oh!) no to . . . Chocolate

Well, I finally had my appointment with the ENT (ear, nose, throat doctor) last week who assured me after sticking a teeny tiny camera through my nose and down my throat that my vocal chords looked just fine, thank you. Of course, by the time of this visit my voice had returned to near normal.

In his opinion, my sexy (hoarse) voice, might have been caused by a broken blood vessel due to coughing. Imagine that! I've been told that I will always have a cough due to the problems with my lungs. Sometimes I cough a lot, sometimes not so much. But I always have a cough.

Oh, and the ENT said there is some evidence of acid in my throat, too. No surprise there as acid reflux is a complication of scleroderma, which is my case is pretty well-controlled by taking medications, avoiding certain foods, elevating my bed, etc., etc., etc.

So thank goodness, no new meds, no further testing, no follow-up appointment. Just some tips on how to prevent acid reflux. Avoid coffee, tea, cola - basically anything with caffeine, don't drink red wine, and don't eat dairy products after dinner, blah blah blah.

I am pretty good at avoiding foods or drinks that will trigger acid reflux, except for one of my favorites:


Yes, the doc said to limit chocolate. I can do without coffee. I don't drink cola or red wine, and I hardly ever eat after dinner. But chocolate? I enjoy having a little bit of chocolate each day. Isn't it supposed to be good for you in some antioxidant sort of way? Doesn't everyone deserve a little bit of chocolate every now and again?

I don't think I can easily give up chocolate. I can try, but I will have to be strong.

I will try to remember this quote by author Judith Viorst:

"Strength is the capacity to break a chocolate bar into four pieces with your bare hands --- and then eat just one of the four pieces."

Viorst is best known to me as the author of the children's book, "Alexander and the Terrible, Horrible, No Good, Very Bad Day." It is precisely on that kind of day when I need a little bit of chocolate.

Wouldn't you agree?

Friday, January 29, 2010

Flashback Friday

Just for fun, I thought I would post a photo of me and my babies from awhile back . . .

2002 to be exact

Some thoughts:

Boy, I sure look tired! And I still am.
WOW - Eight years have gone by really, really fast.
Little did I know at that time how soon our lives would change.
I miss those "baby" days.
I have the cutest kids in the whole wide world.
I cannot imagine my life without them.
I am blessed.

Wednesday, January 13, 2010

Breakfast for Dinner

Stacks of pancakes with butter and syrup, cheesy scrambled eggs with bacon or sausage, French toast stuffed with cream cheese with fresh fruit on top. Our family loves having breakfast for dinner.

We have pancakes for dinner so often that my mom often asks me, “Is it pancake Thursday this week?”

But we didn't wait until Thursday this week. Instead, we had breakfast for dinner on Tuesday. I even fancied it up a bit by making three kinds of pancakes - plain, chocolate chip, and cranberry pecan. We also had bacon, and some fried eggs, too.

Why do we love to eat breakfast for dinner so much? Because it’s easy. It’s a quick meal to make, most of the ingredients are on hand, and the kids gobble it up. My son’s record is thirteen pancakes in one sitting (and he’s just seven years old). Sometimes even my husband makes the pancakes, and he cleans up, too.

When I am really tired and maybe not feeling that great, the kids will eat cereal for dinner. The hubby, too. Can you imagine? But it’s OK because the kids (and the hubby, too) wake up happy and healthy the next day.

A year or so into my journey with chronic illness, I read a book called, “Cereal for Dinner – Strategies, Shortcuts, and Sanity for Mom’s Battling Illness” by Kristine Breese. The book is an excellent resource for ALL moms, not just moms like me. It discusses how to balance taking care of yourself while taking care of your family. It describes the author’s experience with sudden illness, and includes the stories of 18 other mothers who have faced sudden or chronic illness. The book encourages women to ask for help, to lower their standards if necessary, and to know that they can still be terrific mothers even though they cannot compete with the “Supermoms” of the neighborhood. It is a book I choose to look back at every now and again when I need some guidance along my way.

But here’s another mealtime secret I would like to share. Sometimes when we are feeling especially lazy or just tired of cooking altogether, we will have ice cream for dinner. Yippee!!!

Shhh – don’t tell grandma, or the gastroenterologist.

Thursday, January 7, 2010

Feeling blue on a white day

There is no other way to say it.

I am feeling sad today.

I am sad because I just learned yesterday that the scarring on my lungs appears to be getting worse.

I am sad that I just found this out after having some testing done at the beginning of December.

I am sad that the doctors seem to be taking a nonchalant approach to this latest development.

I am sad that there is a huge snowstorm in the Midwest, and that I had to cancel my appointment with the ear, nose, and throat doctor because of the weather.

I am sad that I couldn't get another appointment with this doctor until the end of the month.

I am sad that I still have a hoarse voice, and wondering if it will end up being something serious.

I am sad because my 83-year old mother-in-law just left this morning with my sister-in-law for a four day trip to someplace warm and sunny.

I am sad because a trip to someplace warm and sunny would be wonderful for me, but difficult for me to organize and manage.

I am sad that even a trip to the grocery store, to church, or to the kids' activities is hard for me to manage because of this horrible disease (yes, I said horrible!) Especially in cold and snowy weather.

I am sad that I most likely will not live to be 83, nor 73, nor 63, and maybe not even 53.

I am sad that I am sad because everyone wants me to be positive.

It's hard to be positive when I am feeling like this.

So for today, I will simply be sad.