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.



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.


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 . . .


Thursday, December 3, 2009

Plan B (The Inaugural Post)

Today is my birthday.

I am 43.

I am a wife, mother, daughter, sister, and friend. Once upon a time, I was a journalist, a teacher, a neat freak, a flag twirler, a laundry stain fighter, and a birthday party host extraordinaire - and oh, so many more different things.

That was until Plan B.

Plan B? Plan B is a diagnosis of scleroderma, also known as systemic sclerosis. Scleroderma is a complicated autoimmune disease which affects the skin, but can damage the internal organs as well. About 75 percent of people living with scleroderma are women, many just like me.

I have been living with this illness for nearly six years. Sometimes it makes me feel like I am 83.

Often times, it makes me long for my 20-something self. Heck, even my 30-something self.

Does having a chronic illness limit my ability to do certain things?


Has it changed my perspective on life?

Most definitely!

But I am still me, just a different version of me living day to day with a serious disease.

This blog will be about my thoughts, feelings, and ramblings on and on about being this different and constantly evolving version of me.

It will be about my journey as a mom to two terrific kids, and a wife to a loving husband who has kept his marriage vows despite facing my serious illness.

On my life's journey, the hubby and the kids are along for the ride. Not by choice, but by chance.

We welcome you to join us.