Posts Tagged ‘fibrosis’
It has been a long time since my last post. School has kept me so busy this summer. This is a piece of writing that I did in my writing class. I'd love to hear about your special place.
Smacking the OFF button on my alarm, I am reminded that today I need to get up before the sun…early, early. I don’t want to get up. And the ironic thing is I don’t even have to get up. But, I just need to. Everyone in the entire house is still asleep…kids, husband, snoring dog. I fumble around in the darkness for some clothes and manage to pull on my shorts, tank top, socks, and my comfortable shoes
. I brush my teeth in the dark, trying to make sure I don’t drop a glob of tooth paste in the sink. Yuck, I hate cleaning globs of tooth paste out of the sink.
I can’t wake anyone up because if that happens, my plans of going to my special place would be completely ruined. It’s best if they don’t even know I’m leaving and hopefully everyone will still be in a peaceful slumber when I return.
I pull my hair into a pony tail, grab a water bottle, keys, and head out the door. I don’t need a purse where I'm going. It would just get in the way.
When I arrive, I make the dissent into the dark, cold basement. I shudder and a feeling of dread creeps up on me.
After making a few minor adjustments, I climb up. I tighten the foot straps and drape a small towel nearby because I know I’ll need that later. I will my feet to move, turning slowly and easily.
People begin to arrive. Around me, they make their own adjustments and climb aboard for a ride that will take us all nowhere, but at the same time take us everywhere.
Music plays. Loudly, but I like it that way. Somehow it numbs the pain. We all start out slow at first, but as time passes, slow and easy becomes fast and challenging. Muscles are aching, bodies crying tears of sweat.
“Turn it up,” she says.
We all turn it up.
“Faster!” she barks.
We all go faster.
Misery sets in and I’m really not enjoying myself. When will I arrive? This is taking way too long. Slowly…slowly my physical body takes my mind from this state of suffrage to a wonderful place…a magical place…a place where all my worries, stresses, and frustrations leave my body and drip onto the floor.
This is where it happens. Here, in the saddle of a spin bike, is where my dreams come true. It’s not an easy journey to get here and when life gets busy I don’t travel here as much as I should. But, I know that magic always happens here if I’m only willing to climb on and enjoy the ride.
I started spinning almost four years ago, shortly after Julia was diagnosed with CF. It has been my outlet and I truly believe that it has saved my mental health and wellness. I'd love to hear about what you do to keep your mental sanity…
Monday, the kids and I had the opportunity to volunteer at the Chad Lewis charity golf tournament. The tournament was held at the Promonotory Golf Club in Park City. The proceeds raised at this golf classic benefited the Cystic Fibrosis Foundation. Our assignment was to man a booth at hole 10 and greet the golfers. The kids passed out Creamies and I had the honor of educating high profile business men about cystic fibrosis. The experience was actually quite enjoyable. The only downside was the wind! We did get lucky and got a spot that was somewhat sheltered from the wind, but it just blew and blew. The theme of the tournament could have very well been “Blow Away CF.” We did have mostly sunny skies and warm weather. It wasn’t until we drove back down the canyon into Salt Lake that we got into some rain. The kids were on their best behavior and were very good representatives for the CF Foundation.
We all had a J Dawg at the tournament an they were absolutely fantastic! They have to be the most amazing hot dogs ever! If you are ever in Provo, you need to get yourself a J Dawg. I promise it will be the best you’ve ever tasted.
The kids were in heaven with an unlimited supply of Creamies to devour. Julia is sporting her chocolate Creamie face.
Olivia volunteering at the tournament.
The kids found that they were less wind blown under the table.
The kids running around, expanding a little energy.
I put together a table display with a few pictures of Julia along with her medications and the retail prices of some of them. TOBI an Pulmozyme's retail prices caused quite a few jaws to drop and stimulated some great conversation about cystic fibrosis.
If any of you in the CF community get a call next year asking for your help with this fund raiser, it was a great experience for the kids and I. I highly recommend it.
On a side note, I finally got to sign my teaching contract for the 2011-2012 school year! I’m so excited! The stars have aligned perfectly for this one. It’s kindergarten (I have experience in kindergarten)…it’s part time (full time would have been quite the challenge)…it’s in the afternoon (Julia will have afternoon preschool next year)…it’s in Granite School District (my kids go to school in Granite so schedules will align)…it’s only a 15 minute drive from home (I despise commuting)…it comes with medical insurance benefits (the out of pocket will be half of what we’re paying now)! Truly, it couldn’t be more perfect. I’m so excited and relieved to be employed! This is a huge for our family.
This post comes a week late, but I wanted to let you all know that Julia’s Warriors raised $1315.00 for the Cystic Fibrosis Foundation this year. I couldn’t be happier about this. Unlike today, we had perfect weather for the walk. Congratulations to Shauna Hatch and Kristy Millet for winning a $25 gift certificate to the Paul Mitchell School…we had one last round of prizes to hand out for our donation drawing. I’ll be getting your prize in the mail this week. I’ve been struggling to tie up loose ends this past week. I finished a very intense class with multiple presentations and I could hardly catch my breath. We look forward to raising more money next year!
Julia taking a little break.
Olivia and Julia
The family and my sisters
Our family and the Beach family
The kids made silly hats and Home Depot wooden crafts.
Austin's many crafts
If you have interest in joining us next year, we’d love to have more company on the walk. The kids always have a great time.
We are doing things a bit different this year for our Cystic Fibrosis Foundation fundraising. This week, I put everyone who donated in a drawing for a Jamba Juice gift certificate and two Bitesizers. The video posted below will reveal the winner for last week. We have raised $230 so far! I’ll let you know tomorrow what we’re giving away this week. Don’t forget to put your marathon finish time guess when you donate.
Many of you may not know that our family took an unplanned vacation last week. I got a call from my dad on Martin Luther King Jr. Day and he told me that my Grandma Kamper may only have a few more days left of her life. After trying to figure out flights, we just decided to jump in the van and jet down there to see her one more time before her last breath. We got down to El Centro the next evening and I went to see my sweet little grandma in the hospital. She was indeed in very bad shape when I got there.
About four years ago, my grandma had cultured Mycobacterium avium-intracellulare (MAI) in her lungs and was diagnosed with pulmonary fibrosis. Talk about the things that make you go hummmm. I think we can be fairly sure that Julia’s CF gene comes through the Kamper line…my dad’s side of the family. Anyway, my grandma kept things on the low-down with this diagnosis. She didn’t really talk about it and we now know that she wasn’t treated for it in anyway which seems to have been by choice.
So, after much research on MAI, I found that it is a bacteria that can infect the lungs. Not just anybody’s lungs, but of people like Julia who have CF, or people with AIDS, for example. I read that just like many bacteria that Julia has cultured in her lungs, if MAI is left untreated, it damages the lungs, causing them to fibros, and eventually leads to death. I don’t know why my grandma cultured this bug, but she did and it was left untreated and with time it definitely took its toll.
After Christmas, Grandma Kamper got a cold virus and let’s just say…with pre-existing pulmonary issues, it really took her out. By the time I got to the hospital, she could barely breathe. I keep up on many blogs that have illustrated quite vividly end stage cystic fibrosis. My grandma went out of this world exactly the same way. It truly broke my heart to see her struggling for her every breath. It shattered my heart when she told me that she didn’t want to fight anymore but that she wanted to go home to die. I think it probably took everything my dad had, but he honored her wish and Grandma Kamper went home on Sunday and passed away next to her sweet husband Monday morning.
We were unable to be there when she left this world, but I am so glad I could see her one last time before she earned her wings. She was truly a remarkable woman and I’m so privileged to call her my grandmother.
I will leave you with a few pictures from the trip. I didn’t take any pictures of Grandma, because she was in such bad shape, but I’ll have to get some old ones posted later…The kids were truly in sand heaven last week and the weather couldn’t have been more perfect!
Austin in Glamis
Olivia in Glamis
Julia in Glamis
Kids at Coronado
Me...and the Hotel Del Coronado in background
Julia at Coronado
Joe, Olivia, & Austin at Coronado
Pacific Beach at sunset