Joe- A CF Warrior, January 18, 1992 - February 22, 2011

Last May, Ethan an I went to a Wine Tasting Event in Boonville, California, a small community in Mendocino County, located about 30 miles from the Pacific Ocean.  We have some friends who started up a winery in Boonville a few years ago.  After the event, we all went back to their home for more wine and dinner. 

As I pulled up to the drive way, I noticed a young man standing in the front lawn...coughing.  This was not a "I have a cold type cough."  This was a deep, painful, and violent cough.  My first thought was "He coughs like me."  But a lot of people have coughs for a lot of reasons, so I did not think much of it. 

Later in the evening, as we were eating dinner, I noticed this young man with the cough also had clubbed fingers.  Again, clubbing can occur with other diseases, but this just struck me as more than a coincidence.  While I really wanted to ask this person about his health, I just found it too personal to approach a complete stranger on the subject.  I left the party wondering if I just met someone with CF in a totally random, non-CF related environment. 

Then, on New Years Eve, as I was leaving the gym, in walked this same person. The guy with the cough who I met in Boonville.  Here he was, a member of my small little gym.  I was beginning to feel like our meeting was meant to be.  Still not feeling comfortable saying anything directly to him, I decided to do a little investigating.  Long story and not wanting to sound like a stalker, I was able to find this person and his girlfriend on facebook. 

I sent an e-mail to the girlfriend telling her who I was, that I have CF, and I was just wondering if her boyfriend had CF too. She wrote me back confirming what I already knew in my heart to be true: Yes, he has CF.  However, he really doesn't speak openly about CF and I was under the impression he really was not interested in meeting me.  The girlfriend sounded interested in speaking with me and having someone in her life who understands CF.  As of yet, however, we have not met.

This morning, I learned that Joe Sinnaeve, the young man I met in Boonville, California with a horrible cough has passed away.  I don't know the specifics, but I do know he had CF and was only 19 years old. 

The news of his death is shocking to say the least.  For weeks now I have been thinking about how this person came into my life.  It is not everyday you just randomly meet someone with CF.  I felt a connection, like we met for a reason, a purpose.  I was disappointed he didn't want to meet me, but I tried not to take it personal.  I thought between me and the girlfriend we could ease him into meeting with me and being more open about CF. And now he is gone.  Really, a stranger to me.  Yes, I can't believe just like that he is gone...

Work Out Wednesday-Dedication

Ok, so I lied.  My last Work Out Wednesday post was said to be the final addition.  Lets just say I am not retiring WOWs, but I am just not committing to a blog every Wednesday about exercise. 

BUT

I had the need to share my work out experience from yesterday.  Lately, on Tuesday, I have been having my own personal water aerobics class.  Yesterday, it was pouring rain most of the day, but I really wanted to get in the pool anyway.  I have talked to my doctor about swimming in the cold in an outdoor pool and she has given me her blessing, so I just can't use the weather as an excuse.  The water felt great.  Nice and warm.  What didn't feel great was the 30mph winds that came with this rain storm.  My face and ears where so cold when I was done. 

And it got me thinking...am I crazy or just dedicated?  I love, love, love being in the water and I just don't see why rain and wind should stop me.  I'm don't live my life under the "No Excuses" philosophy, but I am dedicated enough to my exercise routine that I need a better excuse than rain to keep me out of the pool.  :)

My New Craft Space

For years now I have been frustrated that I don't have a designated space for my many and on going craft projects.  Even though we have a three bedroom house, our extra bedrooms are small and really can't serve as a multi purpose room.  Right now we have those rooms set up as an office and an extra bedroom.  I tired once to craft in the extra bedroom, but there was just not enough room.  Then we tried making space in our living room, but having a messy craft table in the living room just seemed out of place.  I just want a space big enough to hold all of my supplies and that I don't have to clean up at the end of the day.

Over the holidays Ethan and I decided to get rid of the extra bedroom and turn it into my craft space.  It was a hard decision because we like our guest to have a place to sleep when visiting, but in reality it is really under utilized space. 

Then Ethan came up with a plan with a good compromise.  He was going to make room for me in the garage.  It would be a big space with lots of room so I can store everything in one place.  My two concerns: lighting and temperature. 

Here is a tour of what he came up with:

The space, including shevles (shared with comic books) and space for all the Rubbermaids.

From Drop Box

A entertainment center composed of our TV/DVD/Receiver recently replaced in our living room.

Additional lighting

And a space heater!

Work Out Wednesday-Final Edition

I started Work Out Wednesdays because I wanted to write a blog on exercising.  I found I had so much to say on the subject, that I needed to write several blogs, not just one or two.  I realized this morning, I have said most of the things I wanted to say about exercising.  So far now, I am retiring Work Out Wednesdays. 

But I wanted to conclude this blog series with a few thoughts to wrap up my lessons learned.  Here they are:

• I have CF.  I do not use the illness as an excuse, I use it as motivation.  One of the first things I learned about this illness is how important it is to exercise. It reminds me to do my best.
• When I am sick, or tired, or just not feeling "it", I give myself a break.  It is ok to give myself a day off.  Pushing myself beyond my limits will only make things worse.
• Staying active is key.  I try to find things I like to do to stay active.  I like to switch it up every now and then to keep things interesting and prevent my routine from getting boring. 

I am sure there will be other exercises posts from time to time. But for now, be active, stay positive, and take the best care of yourself that you can achieve. 

Colleen

 

Sleep Study

Last week, my sleep study was conducted.  The study is ued to determine the presence or absence of sleep apnea, or the loss of oxygen while sleeping.  A common side effect of sleep apnea is sinus problems.  While I don't have the "classic" symptom of sleep apnea (snoring), the CF doctor and I decided it couldn't hurt to complete the test. 

I picked up the equipment from the hospital, where they gave me all the instructions on how to hook myself up and what to do in the morning, including getting the devise back to the hospital the next morning.  Here is what the equipment looked like:

From Drop Box

From Drop Box

From Drop Box

Of course, once I was all hooked up, I couldn't fall asleep.  I think it took me over an hour to fall asleep, where I would normally fall asleep within 10 minutes.  Once I did fall asleep, I slept good for a couple of hours.  But eventually the weight of the devise was too much on my arm.  I unhooked the devise from my arm (just the machine, not the monitors on my fingers). Taking the weight off helped me sleep much better. 

I was told the result would take about 2 weeks, so I am looking forward to seeing what my sleep patterns look like some time next week . 

Work Out Wednesday- More on Physical Therapy

I am now half way through my PT, which has a focus on back strengthening.  I have PT once a week for one hour.  The sessions are going very well, but they are hard!  The first part of the class we work with the physio ball, working on core strengthening.  We do about 7 different exercises, like bridging on the ball, holding each position for about 3 minutes.  3 minutes is a really long time when your muscles are weak or compromised.  The second half of the class is a variety of different exercises like standing on a balance board, using resistance bands, and practicing the proper way to lift a heavier item.  Almost all of the exercises are challenging for me, which really just proves why I need PT. 

In addition to the class once a week, I am suppose to do several exercises a day, five days a week.  The exercises take about 15 minutes and I have been fitting them in on my breaks at work. So far I am on the right track and have note missed a day yet. 

During this time, I have been some-what worried that I am going to hurt myself in some way by taking on a more aggressive approach to my back care.  There is a significant risk in damaging the disk just above my fusion.  My surgeon placed a lot of limitation on my activities, he is just very conservative when it come to taking care of an injured back.  He is actually against PT.  After my surgery, all he wanted me to do for exercise was walk.  At that time, walking was all I could do.  But even after surgery, he continued to really limit my activity.  These where limitations to incorporate for the rest of my life...in protection of the rest of my spine.  I have lived with these limitations...and now I am weak.  My Dr. hates the physio ball, now I have a whole routine centered around it.  Is my doctor just being over protective? Or is the PT not considering the significance of my condition?  Who do I listen to? 

I will admit, I have been feeling great since starting PT.  I feel like there is less pressure on my back.  I feel like I am walking taller.  I think for now I am comfortable with PT.  I am planning on sticking with this routine for a while.