Rare Disease Day

Today is not only Leap Day, it's Rare Disease Day. Rare Disease Day, now in it's fifth year, is a day to promote awareness and advocacy around the world for the millions of people affected by a rare disease.
I am one of the millions.
I have three rare diseases:
Scleroderma, a complicated autoimmune disorder. The progression of Scleroderma led to problems in my lungs including:
Pulmonary fibrosis, scarring of the lungs.
Pulmonary Hypertension, high blood pressure in the lungs (this is much different than high blood pressure).

These are not good things. I take a very long list of medications. I have a team of five doctors. I am poked with a needle once per month for bloodwork, and I undergo a variety of medical tests each year. I am limited in my day to day activities. I worry about the future for me and my family.

These three rare diseases not only affect me but all those who know and love me, especially T and the kids. It's a bumpy road for all of us. I have touched on this topic once before, in the post "Making Lemonade." Despite all the bad that comes with living with rare chronic illness, there are good things on this road:

2. Resilience: This means facing life’s difficulties with courage and patience – refusing to give up. I am learning this coping skill every day, and hopefully passing it along to others as well, most importantly to my children.

3. Faith: This is actually something I have been struggling with a lot lately. How can I strengthen my faith in God as I experience difficult challenges? How can I be the best version of myself despite living with a serious chronic illness? How can I pray for others with rare diseases who face the same, or even more, challenges than me?

1. Connections: I have met some awesome people both in person and online on this journey that I would not have met otherwise. I know four people who have successfully undergone a lung transplant - truly amazing! I have come to know terrific doctors, nurses, respiratory therapists, and other healthcare workers who genuinely care about their patients. I have friends who can relate to my struggles and worries. They are a source of strength, hope, caring, and love.
So on this day, take a leap! Pray for those living with a rare disease Share this blog and video with family and friends. Thank you.

Listing one way or the other

Do you make lists?

I don't and Sue does.
I don't mean I NEVER make lists, but I don't normally bring a list with me to the grocery store or have a to-do list posted on the fridge or something like that. I've got other friends who are completely supporting the industry of Post-it notes all on their own and I do not get it. They in-turn do not get my aversion to lists. To help us understand each other, we've decided to post 3 good things about listing or not listing. Which way do you lean?

I'll let Sue go first.

Sue (to list)
Before I note my 3 good things about list-making, I will note some famous list-makers:
David Letterman - The Top 10
Richard Blackwell - The 10 Worst-Dressed Women List
Benjamin Franklin - A list of 13 Virtues
Martha Stewart - Lists, lists, lists! Most likely she keeps a master list of all of her lists.
Of course, there's Santa Claus, too - The Naughty and Nice List
So as a list-maker, I do believe I am in good company because . . .

2. It keeps me and the family (somewhat) organized: Who is doing what, where, when, and what do they need to bring? Do I need to RSVP to a special event, send an email to a teacher, coach, or a doctor, pay bills, plan a party, fill out forms? How do I keep track of my long list of medications? I can make lists to keep track of all those things and more!

3. It helps with shopping: This is especially beneficial to T, who does most of the grocery and household shopping these days. I try to write him a very detailed list complete with sale items, prices, and notations for coupons, too. Shopping lists also come in handy for Back to School, Christmas-time, and birthday celebrations.

1. It gives me a sense of accomplishment: Crossing items off a to do list is a rewarding feeling, especially on days when I feel like I'm not getting anything done. It might be as simple as "buy snacks for the classroom party" or complex as "get documents in order to work on tax returns." Either way, it's good to take note of things that need to get done, get 'em done, then scrach them off the list.

Brian (to list not)
I don't even want to make this list.

2) It keeps my mind sharp - remembering all this stuff as needed. Of course I don't consciously think to myself, "I better not write this down, I don't want to cheat my memory" or anything. I just doesn't occur to me to make the list.

3) I don't have to make lists! It seems like such an unnecessary chore in the first place. Do I need to write something down in order to do it? Or is it just the satisfaction one gets from checking things off the list? Either way - tedious!

1) Do I really have to come up with another item?

So which way do you lean - lister or not? Team Sue? Team Brian? Share your thoughts in the comments section of this list-making blog.

It's his birthday . . .

and he can cry if he wants to. As much as he complains about getting another year older, I do believe my dear husband T enjoys his special day.
Maybe.
Perhaps just a little bit.
There are good things about birthdays:
2. Cake (or some other tasty dessert)
3. Presents
1. Funny cards about getting older

But these are not my 3 Good Things for today, instead I will share some of T's favorite birthday celebrations from back in the day:

2. B&B and ski: In our newlywed days many moons ago, we ventured on a trip to a bed and breakfast in Baraboo, WI. I surprised T with a balloon bouquet delivered to our room. We went skiing - yes, even me! I do believe dinner and movie was on our agenda, too. You know besides sleep ;)

3. Eagle-watching weekend at Starved Rock: Cue kids, a trolley tour, some eagles, dinner, and an overnight stay at the Starved Rock Lodge. It was all good 'til we returned home, then T and Miss O came down with a mysterious flu-like ick which we attributed to a dip in the crowded lodge pool. Thankfully, A and I were spared.

1. Aloha: No I didn't take T to Hawaii for his birthday, but that would have been even better than good. Instead, the kids and I hosted a little birthday luau in his honor with a delish Hawaiian menu, decorations, music, and more.

Three good birthday memories for my very special guy who will always be older than me!
Happy Birthday T! We love you!

Oh Snap! Valentine's Day Re-cap

Our Valentine's Day was filled with food and fun, and of course, it included my 3 Good Things about VD:

2. Heart-shaped eats

Big yummy brownie! T: How did you make the heart in the center? My sweet A: She did it with love.

Little grilled cheese sandwiches for the kids (also made with love!)

3. Valentine Greetings
We got 'em!

1. Chocolate!
T got my not-so-subtle hints!

Here's hoping your Valentine's Day was filled with good things, too!

All you need is love . . .

Yes, that day is coming soon- February 14. Valentine's Day. The day for hearts and roses, hugs and kisses, and shoe boxes stuffed with tiny cards featuring colorful characters and goofy greetings. People have very different views about this holiday. Is it a day meant only for sweethearts? A money-making opportunity for florists, greeting card companies, chocolate makers, and jewelry stores? Is it just another day?

Here at the 3 Things blog, we have opposing views about Valentine's Day. Big surprise, huh? As an ol' married lady with two kids my perspective is much different than my counterpart - the single guy. After all, he is single, and well, he's a guy. My hubby T says Valentine's Day is a holiday for women, and I do believe Brian seconds that opinion (he can correct me if I'm wrong.)

As a married lady of 16 years and counting, and a mom, Valentine's Day to me is not about expensive presents, romantic getaways, or lacy lingerie. It's about celebrating the ones I love by sharing small, simple gifts like cards and candy, or hearts and hugs.

With that in mind, we will share with you 3 Good Things about Valentine's Day from 2 very different viewpoints.

Sue

2. Heart-shaped eats: Valentine's Day is a day to make and eat heart-shaped food. One year, before Miss O and her little bro A came along, I made T a heart-shaped pizza. Last year, I surprised them all with mini heart-shaped hamburgers for dinner. This year, I'm thinking something sweet. Perhaps cookies, brownies, or chocolate cake. Festive and fun, yummy goodness!

3. Valentine greetings: Sweet homemade (or even store bought cards) from the kids to me, and to the kids from their grandparents, their aunts and uncles, and their friends and classmates, too. I enjoy receiving a thoughtful Valentine from my sweetie in which he expresses his undying love and devotion to me - HA! I especially like the XXXOOO's from T, or cute drawings from the kids.

1. CHOCOLATE! The other day, while watching our usual Thursday night television line up, a commercial for a diamond heart necklace packaged with Godiva chocolate gems kept popping up. "I would take the chocolate, not the necklace," I told T. Knowing me well, he laughed and agreed. While jewelry is lovely, chocolate is divine, and much less expensive, too!

Brian

Indeed I concur with Mr. T there! I've been down the VD road... that's short for Valentines Day, but just as painful... a whole bunch of times and I have a question. What makes this a holiday that men have to pony up for and women are essentially off the hook? We see that in TV sitcoms - the guy didn't remember something for VD or for that matter an anniversary - and he gets raked over the coals, but there's no mention that the woman in the equation lifted a finger. My personal love-life-experience has lined up with that, except I was the dutiful guy, with the card, the flowers, the special events and so on. I did mess up once and I took full responsibility there, but that's another story.

With that in the back of my mind, but now off my chest, here are my good things!

2) Flowers I love flowers - love giving them and I don't mind receiving them. If you've ever been to my home (ok... that's hardly anyone) you've seen that I often have some fresh cut flower or something going on.

3) Cards I love cards! I send them out for the fun of it, and I love sending a good birthday card. In this case, the VD cards are a little limiting, but a box of school-type valentines goes a long way for just a couple of bucks.

1) Specialness is that a word? I say it is. I enjoy the spirit of loving kindess around the day. I don't mind the "Happy Valentine's Day" exchange and don't mind seeing the reds and pinks with candy hearts and trite sayings. It's a major cheese-fest and I'm a cheesy guy. I'm really a hopeful romantic. It's fun to feel special!

One more note on the single-side:
If you're in love, if you're in a couple, please be sensitive to those who aren't. Don't forget that the weeks leading up to, and the day itself, can be a powerful reminder that we can feel rather alone. Sometimes we feel alone in a very real sense because we live in a world that holds up couple-ness above all. As you approach us, platitudes are not helpful and please don't worry about trying to include us in your VD plans. Think about being thoughtful to your single friends at other times. We love coming over for dinner. We love hanging out with you and we don't feel as much like a 3rd wheel as you think we might. We're kinda cool like that. (and I'm available for dinner most evenings during the week).

Animals at Work

Good things at work. It's a zoo.

My week at work is kind of like this.

I'm going as fast as I can with my own stuff, while things that seem like crises to the people holding them out to me are simply not real emergencies. The old expression, "poor planning on your part does not qualify as an emergency on my part" comes to mind. However, that's not a kind attitude to take.

I prefer to think of them like this.

Each thing seems to have its own priority, but at the end of the day, they are really just kittens. Nobody is going to die, get fired, or be hurt by my choice to simply take hold of the kitten and add it to the pile for now. I'll get to it.




In the wild... there are Cattle...

And there are Buffalo (Bison).

They live in the same or similar environment.
When a storm comes upon them, Cattle run away from the storm. The storm eventually overtakes them. They are running in the same direction as the storm, so the time spent in the storm is longer than if they were standing still. When the storm passes, they stop, look around and try to figure out how to get back to where they were, but they were in the storm for so long that they end up wandering around for a while before they settle in and start up wherever they are. Then cowboys need to go round them up and bring them home.

Buffalo on the other hand run towards the storm. This is uncomfortable to the buffalo and everyone with the buffalo. However, they can fix their eyes on a destination, running towards it, while the storm arrives. The storm lasts less time than if they were standing still and at the end, if the buffalo want to turn around and go back where they came from, they can. Remember, they were able to pick a destination on the other side of the storm and get to it.

Thanks to my co-worker Jenn for telling me the story of the Buffalo!

Good things? Well, of course they are good things!
2) I can stay ahead of the bull
3) I can herd cats
1) I am a buffalo

Oh Snap!

Here at the 3 things blog, we're taking a shot at a new feature: 3 Good Things in Photos!

The photos may be silly or serious, creative or crazy, random or ridiculous, or maybe even poignant! There most likely will be photos of food because we like to eat, and food is GOOD! And there will be photos of kids because kids are CUTE, and I have two precious children, and Brian has two adorable nephews. But . . .

There probably will not be photos of cats, at least not by me. Dogs, maybe. Cats, not so much. My apologies to cat lovers world-wide.

We will post our photos on a whim, keeping in mind the words of Napoleon Bonaparte:

"A picture is worth a thousand words"

BTW, I did not know Napoleon uttered that famous phrase, but I bet Brain (oh, of course, I mean Brian) did!

That being said, I present the very first official installment of "Oh Snap!"


2. The kids hit the ski slopes for the first time ever, and returned with just one small bump on the knee (Miss O)


3. I got this new gadget as a gift from my sis this week. I see a latte of yummy coffee drinks in my future.


1. Miss O and I got creative with crayon shavings, wax paper, and an iron. We are just like Martha Stewart!

That concludes the very first installment of Oh Snap! - 3 Good Things in Photos. Watch for Brian's episode coming soon or whenever he feels like it.

Heartfelt memories of a former life

Once upon a time, oh so long ago, before two kids and one chronic illness, I was a teacher. I enjoyed being a teacher, and I think I was pretty darn good at it, if I do say so myself.

I miss it sometimes.

I missed it while working out at pulmonary rehab the other day. They had been hanging up decorations for Valentine’s Day like cute chains and mobiles made of construction paper hearts. “That reminds me of my teaching days," I told Lisa, who had been stringing hearts across the windows.

Sigh . . .

There are boxes of my teaching stuff piled up in our basement – bulletin board materials, lesson plans, books, holiday decorations, but most of all . . .

Memories

Memories of my life before a chronic illness that has no cure. A life filled with hopes, dreams, ambition, and construction paper hearts.

Sigh . . .

As I look back and reminisce about that former life, I am thankful for the good things about my teaching days.

2. Aha moments – The best part about teaching! That look on a child’s face when they finally get it! Like a light bulb, all bright and shiny, and eager to learn more.

3. Collaboration with colleagues – I had wonderful opportunities to work with very smart, creative, and inspiring people every day. They truly cared about the students, and we worked hard together to help them succeed.

1. School hot lunch – HA, just kidding!

My classroom – Room 306. It never had quite the right temperature, the tiles were coming up from the floor, and I never really found the perfect layout to optimize teaching and learning. But it was a place filled with creativity and possibility – clever bulletin boards filled with student work, lots and lots of books, chalk dust, glitter and glue, and most importantly, eager minds and smiling faces.

And of course, paper chains strung across the room.