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:
CHOCOLATE!
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?
Monday, February 1, 2010
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.
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.
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.
Wednesday, December 30, 2009
2009 - A Year in Review
With the hustle and bustle of Christmas over and a new year fast approaching, I have been taking some time to reflect on the events of the past year. It has been a year filled with ups and downs, good times and bad, and bittersweet memories. There has been sorrow, pain, and lots of tears. But there also has been joy.
And laughter.
And many, many small moments in our daily lives that kept me going, and reminded me that there is a higher power watching over us all.
So without further adieu, here are some of the highs, the lows, and the in-betweens of 2009:
January: After being very sick for many months prior to the new year, a right heart catherization revealed that I have pulmonary hypertension (high blood pressure in the lungs). It is secondary to the scleroderma, but is considered a serious complication of the disease. I started to use supplemental oxygen at night and upon exertion to help with breathing issues. This was a very difficult time for me, and for us all. I cried. I cried a lot. My daughter cried, too.
February: Still quite ill and unable to tolerate cold weather, my sister came to town to help with the kids, make meals, and accompany me and my husband to doctors' visits. The kids celebrated Valentine's Day by exchanging cards with classmates. My son played floor hockey. My daughter took gymnastic classes. We tried to maintain "normal" around the house, despite everything that was not. My husband turned 44 years old. I got bi-focals. I added a new pulmonologist to my roster. He is close to home, compassionate, and takes a pro-active approach to my care.
March: I finally leave the house for something other than doctors' appointments. My daughter and I saw a play and went out to dinner with friends. I watched the kids rollerskate at Family Skate night. I started a pulmonary rehabilitation program. Though difficult at first, it has proven to be a much needed and positive part of maintaining my health and well-being. My old college friends cheered me up with an evening of dinner, conversation, and laughter. They made the dinner including dessert, and brought it to me. They even gave us the leftovers! I shopped with my mom and sister for my daughter's First Communion dress.
April: My baby boy turned seven! We celebrated with a soccer party for kids at the local YMCA, and a small family party at home. My husband and daughter attended the annual Daddy/Daughter dance at the local high school. It's a springtime ritual for them both. We celebrated Easter. We colored eggs, made a lamb cake, attended Mass, and ate a wonderful meal prepared by my oldest sister.
May: My beautiful daughter made her First Holy Communion. We hosted a gathering at a local restaurant filled with good food, family, and friends. I attended the kids' art show and ice cream social at school. My husband took my son to his very first major sporting event - a Chicago Fire soccer game! My daughter broke her elbow jumping off the swing in the backyard. She chose a bright, neon-green cast. My son's spring soccer team ended the season undefeated!
June: I "graduated" from pulmonary rehab. I felt so much better than I did at the start of 2009. I chose to stay in the rehab maintenance program for the long haul. We attended a breakfast at school for my daughter who earned a "Character Counts" award. On Father's Day, we saw the musical, "Mary Poppins" and stuffed ourselves with Pizzeria Uno pizza. I needed to use my supplemental oxygen as we walked around the city. But I did it!
July: My hubby and I celebrated out 14th wedding anniversary. My parents celebrated their 48th! Like we do every year, we watched the community Fourth of July parade, had a small family BBQ, and "oohed and awed" at the fireworks later that night. My daughter decided she wanted to be a rock star, so she began guitar lessons. The kids took swim lessons, and did things kids do during summer vacation like catching lightening bugs, riding bikes, and fishing with their dad.
August: We took a short family vacation to Michigan. I climbed down and up the dunes (using my supplemental oxygen.) The kids played in the sand and swam in the waves, so did their daddy. During all the fun, he lost his wedding ring in the lake or on the shore :( We played mini-golf and picked peaches. We ate ice cream. The kids played shuffleboard. It was a simple, no frills vacation. My son began the fall soccer season. My daughter made the Y gymnastics team.
September: Another school year began. My daughter started third grade, followed by her little brother in second. I'm amazed at how fast they are growing up. I mourned the loss of my teaching career as the job would be too physically demanding for me now. I gave some of my teaching supplies and materials to a friend. I attended a Scleroderma Patient Education Day at Northwestern University with a friend from pulmonary rehab. It was informative, insightful, and helpful to meet with other people much like myself.
October: Fall was officially in full swing with kids hard at work at school, and myself hard at work at pulmonary rehab. Our family had a great time at my annual college roommate get-together. Great friends, good food, and much-needed laughter. We visited a nearby pumpkin farm. We took a hayride, and the kids picked pumpkins that we later carved into jack o' lanterns. The kids trick or treated as a Rock Star and a British soccer player. They collected way too much candy!
November: The rock star turned nine! My mom turned 70. We celebrated with a lovely family dinner at an Italian restaurant. We also hosted a tie dye party for the rock star and her friends. The girls cracked us up with crazy freeze dancing, silly faces, and an ill-attempt at pyramid building. We enjoyed a delicious turkey dinner with the trimmings at my sister's home complete with the kids' version of the First Thanksgiving starring various stuffed animals as the Pilgrims and the Native Americans. We had much to be thankful for this year like family, friends, God, and many, many prayers from both near and far.
December: I celebrated my 43rd birthday. A laundry area remodeling project began, and was completed just in the nick of time before the holidays. The laundry area was moved from the basement of our two story home to the first floor in an effort to ease this chore for me and for the rest of the family, too. My daughter won five ribbons in her first gymnastics meet. Her faced beamed with happiness. I beamed with pride. We prepared for the birth of Jesus. We baked Christmas cookies with my sister, and she helped us decorate our tree and house for the holidays. The kids sang beautifully at the Christmas pageant and Mass on Christmas Eve after we spent a nice quiet lunch with my mother-in-law. Santa came. The kids received most everything they wanted. We enjoyed a delicious Christmas dinner with my parents and sisters. It snowed. The kids planned their fourth annual New Year's Eve party with their auntie.
2009 has been a busy, challenging year for our family. But we have made it. I have made it!
Here's to 2010. May it be filled with many more extraordinary (and ordinary) memories for all.
Peace,
Suzanne
And laughter.
And many, many small moments in our daily lives that kept me going, and reminded me that there is a higher power watching over us all.
So without further adieu, here are some of the highs, the lows, and the in-betweens of 2009:
January: After being very sick for many months prior to the new year, a right heart catherization revealed that I have pulmonary hypertension (high blood pressure in the lungs). It is secondary to the scleroderma, but is considered a serious complication of the disease. I started to use supplemental oxygen at night and upon exertion to help with breathing issues. This was a very difficult time for me, and for us all. I cried. I cried a lot. My daughter cried, too.
February: Still quite ill and unable to tolerate cold weather, my sister came to town to help with the kids, make meals, and accompany me and my husband to doctors' visits. The kids celebrated Valentine's Day by exchanging cards with classmates. My son played floor hockey. My daughter took gymnastic classes. We tried to maintain "normal" around the house, despite everything that was not. My husband turned 44 years old. I got bi-focals. I added a new pulmonologist to my roster. He is close to home, compassionate, and takes a pro-active approach to my care.
March: I finally leave the house for something other than doctors' appointments. My daughter and I saw a play and went out to dinner with friends. I watched the kids rollerskate at Family Skate night. I started a pulmonary rehabilitation program. Though difficult at first, it has proven to be a much needed and positive part of maintaining my health and well-being. My old college friends cheered me up with an evening of dinner, conversation, and laughter. They made the dinner including dessert, and brought it to me. They even gave us the leftovers! I shopped with my mom and sister for my daughter's First Communion dress.
April: My baby boy turned seven! We celebrated with a soccer party for kids at the local YMCA, and a small family party at home. My husband and daughter attended the annual Daddy/Daughter dance at the local high school. It's a springtime ritual for them both. We celebrated Easter. We colored eggs, made a lamb cake, attended Mass, and ate a wonderful meal prepared by my oldest sister.
May: My beautiful daughter made her First Holy Communion. We hosted a gathering at a local restaurant filled with good food, family, and friends. I attended the kids' art show and ice cream social at school. My husband took my son to his very first major sporting event - a Chicago Fire soccer game! My daughter broke her elbow jumping off the swing in the backyard. She chose a bright, neon-green cast. My son's spring soccer team ended the season undefeated!
June: I "graduated" from pulmonary rehab. I felt so much better than I did at the start of 2009. I chose to stay in the rehab maintenance program for the long haul. We attended a breakfast at school for my daughter who earned a "Character Counts" award. On Father's Day, we saw the musical, "Mary Poppins" and stuffed ourselves with Pizzeria Uno pizza. I needed to use my supplemental oxygen as we walked around the city. But I did it!
July: My hubby and I celebrated out 14th wedding anniversary. My parents celebrated their 48th! Like we do every year, we watched the community Fourth of July parade, had a small family BBQ, and "oohed and awed" at the fireworks later that night. My daughter decided she wanted to be a rock star, so she began guitar lessons. The kids took swim lessons, and did things kids do during summer vacation like catching lightening bugs, riding bikes, and fishing with their dad.
August: We took a short family vacation to Michigan. I climbed down and up the dunes (using my supplemental oxygen.) The kids played in the sand and swam in the waves, so did their daddy. During all the fun, he lost his wedding ring in the lake or on the shore :( We played mini-golf and picked peaches. We ate ice cream. The kids played shuffleboard. It was a simple, no frills vacation. My son began the fall soccer season. My daughter made the Y gymnastics team.
September: Another school year began. My daughter started third grade, followed by her little brother in second. I'm amazed at how fast they are growing up. I mourned the loss of my teaching career as the job would be too physically demanding for me now. I gave some of my teaching supplies and materials to a friend. I attended a Scleroderma Patient Education Day at Northwestern University with a friend from pulmonary rehab. It was informative, insightful, and helpful to meet with other people much like myself.
October: Fall was officially in full swing with kids hard at work at school, and myself hard at work at pulmonary rehab. Our family had a great time at my annual college roommate get-together. Great friends, good food, and much-needed laughter. We visited a nearby pumpkin farm. We took a hayride, and the kids picked pumpkins that we later carved into jack o' lanterns. The kids trick or treated as a Rock Star and a British soccer player. They collected way too much candy!
November: The rock star turned nine! My mom turned 70. We celebrated with a lovely family dinner at an Italian restaurant. We also hosted a tie dye party for the rock star and her friends. The girls cracked us up with crazy freeze dancing, silly faces, and an ill-attempt at pyramid building. We enjoyed a delicious turkey dinner with the trimmings at my sister's home complete with the kids' version of the First Thanksgiving starring various stuffed animals as the Pilgrims and the Native Americans. We had much to be thankful for this year like family, friends, God, and many, many prayers from both near and far.
December: I celebrated my 43rd birthday. A laundry area remodeling project began, and was completed just in the nick of time before the holidays. The laundry area was moved from the basement of our two story home to the first floor in an effort to ease this chore for me and for the rest of the family, too. My daughter won five ribbons in her first gymnastics meet. Her faced beamed with happiness. I beamed with pride. We prepared for the birth of Jesus. We baked Christmas cookies with my sister, and she helped us decorate our tree and house for the holidays. The kids sang beautifully at the Christmas pageant and Mass on Christmas Eve after we spent a nice quiet lunch with my mother-in-law. Santa came. The kids received most everything they wanted. We enjoyed a delicious Christmas dinner with my parents and sisters. It snowed. The kids planned their fourth annual New Year's Eve party with their auntie.
2009 has been a busy, challenging year for our family. But we have made it. I have made it!
Here's to 2010. May it be filled with many more extraordinary (and ordinary) memories for all.
Peace,
Suzanne
Monday, December 14, 2009
Losing my voice, adding a doctor
About three weeks ago or so, I began to have a very hoarse voice.
The nurse at the office of one of my doctors said it sounded sexy.
I disagree.
I sound like a frog with a very bad sore throat.
It is starting to be annoying.
When I speak to my husband, he replies "What?"
When I talk to my mom. She asks, "Huh?"
When I try to talk louder so the kids will hear me,
they think I'm yelling at them.
It's hard to help my son with his speech homework,
test both kids on their spelling words or
read them a bedtime story.
It is frustrating.
I would like to pull the covers over my head and not speak to anyone until January.
That is when I have an appointment with an ear, nose, and throat doctor. I think he has a fancier title, but I'm not sure what it is.
Another doctor joining my team - yippee I shout in a sarcastic voice.
Here is the current roster:
A rheumatologist, two (count 'em two) pulmonologists, and a gastroenterologist. I like to refer to them as the "ologists."
Over the past six years, I also have seen several primary care doctors, three other rheumatologists, an infectious disease specialist, and a cardiologist.
Why so many doctors? Because scleroderma is a complicated disease with complicated symptoms.
The rheumy takes care of my overall health, checks on skin tightening, joint and/or muscle pain, monitors Raynaud's phenomenon - a condition in which fingers (and sometimes toes) turn purple, blue, or white with exposure to cold or stress, orders tests and blood work, and coordinates with other specialists.
The pulmonologists (one local, one at a big city research hospital) treat and monitor lung complications. In my case, these include pulmonary fibrosis (scarring of the lungs), and pulmonary hypertension (high blood pressure in the lungs). These are the most serious complications of my disease. These complications will most likely shorten my life span.
The gastroenterologist treats and monitors my acid reflux and slow moving stomach.
Sometimes it's very hard to keep all these doctors on the same page. Other times, it's hard to determine which doctor to call when a new symptom pops up.
Like my "sexy" new voice.
Ribbit.
The nurse at the office of one of my doctors said it sounded sexy.
I disagree.
I sound like a frog with a very bad sore throat.
It is starting to be annoying.
When I speak to my husband, he replies "What?"
When I talk to my mom. She asks, "Huh?"
When I try to talk louder so the kids will hear me,
they think I'm yelling at them.
It's hard to help my son with his speech homework,
test both kids on their spelling words or
read them a bedtime story.
It is frustrating.
I would like to pull the covers over my head and not speak to anyone until January.
That is when I have an appointment with an ear, nose, and throat doctor. I think he has a fancier title, but I'm not sure what it is.
Another doctor joining my team - yippee I shout in a sarcastic voice.
Here is the current roster:
A rheumatologist, two (count 'em two) pulmonologists, and a gastroenterologist. I like to refer to them as the "ologists."
Over the past six years, I also have seen several primary care doctors, three other rheumatologists, an infectious disease specialist, and a cardiologist.
Why so many doctors? Because scleroderma is a complicated disease with complicated symptoms.
The rheumy takes care of my overall health, checks on skin tightening, joint and/or muscle pain, monitors Raynaud's phenomenon - a condition in which fingers (and sometimes toes) turn purple, blue, or white with exposure to cold or stress, orders tests and blood work, and coordinates with other specialists.
The pulmonologists (one local, one at a big city research hospital) treat and monitor lung complications. In my case, these include pulmonary fibrosis (scarring of the lungs), and pulmonary hypertension (high blood pressure in the lungs). These are the most serious complications of my disease. These complications will most likely shorten my life span.
The gastroenterologist treats and monitors my acid reflux and slow moving stomach.
Sometimes it's very hard to keep all these doctors on the same page. Other times, it's hard to determine which doctor to call when a new symptom pops up.
Like my "sexy" new voice.
Ribbit.
Tuesday, December 8, 2009
My Love/Hate Relationship with SNOW!
Much to my dismay, winter is off to a blustery start this week with the arrival of the flurry white stuff, cold temperatures, and a pair of shiny new snow boots for my daughter - just in the nick of time (whew!)
I have never been much of a winter enthusiast despite living in the Midwest for all of my life. Sure I played in the snow as a little kid - making snow angels and forts, sledding with friends, or building snowmen with my sisters. But as soon as a little bit of snow or ice made its way into that tiny space on my wrist between my mitten and my coat, I was done for the day! Time for hot cocoa and cookies.
So in honor of this first snowfall of the season, I will share with you what I love and hate about SNOW:
Love: How pretty the snow looks falling down, and how it blankets the bare tree branches and bushes.
Hate: How yucky the snow looks on the side of the road all gray, black and slushy after rush-hour traffic.
Love: When my children shout with excitement "It's snowing, it's snowing!" Then, stuff themselves into snow pants, coats, boots, hats, and mittens to go outside to play for hours.
Hate: Stuffing myself into layers of clothing, a coat, a hat, a scarf, and boots to drive in the ugly, gray slushy stuff just to run a short errand.
Love: The crunch crunch sound your boots make on the fresh fallen snow.
Hate: I don't get to hear that crunch crunch sound too much these days because my illness keeps inside during much of the winter.
Love: When daddy takes the kids out sledding!
Hate: That I miss out on all the snow-frolicking fun because it's too cold and windy for me to breathe, I can't climb up a hill, and I wouldn't be able to move due to all the layers I would need to wear just to keep warm - kind of like Ralphie's brother in the movie The Christmas Story.
But at least I can make cookies and hot cocoa for the kids when they come inside with their cheeks all rosy and bright.
Absolutely love: This photo of my kids in the snow from a few years back . . .
2006
I have never been much of a winter enthusiast despite living in the Midwest for all of my life. Sure I played in the snow as a little kid - making snow angels and forts, sledding with friends, or building snowmen with my sisters. But as soon as a little bit of snow or ice made its way into that tiny space on my wrist between my mitten and my coat, I was done for the day! Time for hot cocoa and cookies.
So in honor of this first snowfall of the season, I will share with you what I love and hate about SNOW:
Love: How pretty the snow looks falling down, and how it blankets the bare tree branches and bushes.
Hate: How yucky the snow looks on the side of the road all gray, black and slushy after rush-hour traffic.
Love: When my children shout with excitement "It's snowing, it's snowing!" Then, stuff themselves into snow pants, coats, boots, hats, and mittens to go outside to play for hours.
Hate: Stuffing myself into layers of clothing, a coat, a hat, a scarf, and boots to drive in the ugly, gray slushy stuff just to run a short errand.
Love: The crunch crunch sound your boots make on the fresh fallen snow.
Hate: I don't get to hear that crunch crunch sound too much these days because my illness keeps inside during much of the winter.
Love: When daddy takes the kids out sledding!
Hate: That I miss out on all the snow-frolicking fun because it's too cold and windy for me to breathe, I can't climb up a hill, and I wouldn't be able to move due to all the layers I would need to wear just to keep warm - kind of like Ralphie's brother in the movie The Christmas Story.
But at least I can make cookies and hot cocoa for the kids when they come inside with their cheeks all rosy and bright.
Absolutely love: This photo of my kids in the snow from a few years back . . .
2006
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