05 December 2006

There and back

So, as you can see it's been quite a while since I have been here. Work is getting busy and so is life. It goes up and down. Unfortunately this is one of those down times. Not sick, actually as far as CF goes I am probably better than I have been for a long time. But life continues to crash in on us. Things go wrong, expectations are not met. Friends forget things they shouldn't, and family that you thought were the only people in the world to understand, suddenly show they don't.
It is something that I have to be reminded of sometimes. It is something that comes from one of my favorite books in the world. You may recognize it:

"You never really understand a person until you consider things from his point of view... Until you climb inside of his skin and walk around in it."

It comes from To Kill a Mockingbird. Sometimes I will go a long time with a friend or colleague or family member, and think that because they listen and say the right things and do the right things for a long time, that they finally understand me... Not just CF but me with CF, we are one.
But slowly time after time they all fade away and disappoint. Last week, one of those times came. It is always a shock. It always hurts just a little, but this time it was someone who was going on 20 years of "understanding", and in one careless statement it all washed away. I realized that not even this person understood. Nor would they ever understand. This time it hurt bad. I was not prepared to deal with the pain and frustration of it. It took me a good 4 days to recover enough to even function on a normal level again instead of just in existence mode. Someday I may share what happened, but the pain right now is too new.
My advice for everyone... everyone!
Pay attention here.

Sometimes there are things that you don't understand.

Don't judge.
We see the person parking in the Handicap stall, and they don't look sick.
You never know.
Some people have to make hard decisions in their lives. We don't always know why.
Don't try to solve their problems... support the decision and maybe it would be ok to walk on eggshells just a little with some things that may be hard for them.
Or maybe it will take them longer to be happy for you... when you get what you want and they don't.
Maybe you could be understanding about that.
Enough of my soapbox, you get the idea. Anyway, I should be back now.

06 September 2006

Married to Jennifer Garner

Sorry for the lack of posting, we've been out of town for a couple of weekends. But I wrote some updates on paper and should be able to get them up this weekend. Watch for Playing Dad and the Spoon Theory coming soon to this blog.
So for more than 9 years now I have been married to Jennifer Garner. Ok so not really Jennifer Garner, but if you want to know what my wife looks like it is definitely Jennifer Garner. More the 13 going on 30 than the Alias JG, but still her. It's not just me either, strangers in the mall and the grocery store will tell her this as we walk down the aisle. My wife likes this, obviously she thinks Jennifer Garner is cute and sweet and it feels like a compliment to her.
Whatever you do, please do not make the assumption that she looks like Hilary Swank. My wife doesn't really like HS, the last time someone told her that, she was very polite, but once out of ear shot she told me she thinks HS is ugly and she doesn't think she looks anything like her.
So if you see my wife, remember she looks like JG not HS. You could even say Julia Roberts, that is who I think she looks like if anyone. This is acceptable to her, and I once toyed with the idea of calling her pretty woman, but I don't think that movie is very complimentary to the female species, so I have decided against it.
Soooo, you ask, why are you telling me this. Well, in keeping with my "anonymity" theme on the blog here for now, I will refer to my wife as Jennifer or Jennifer Garner or just JG since that is way less typing.
I also wanted to express the fact that this woman has saved my life. I definitely would not have survived so long with CF without someone by my side. She has been through the hard times, when she had to put in our new yard all by herself. And through the good times... Which I think is right now when I have time to take care of the yard mostly and have dinner ready for her when she gets home from work (she works 10 hr days.) And when we have the time and money to do the things that we think are important.
Before we were married she only had one desire, one thing that she prayed for pretty exclusively. Not that I would live long or we would be rich, but that we would be able to have great memories. I hope that she has gotten her prayer answered. I know that I have wonderful, amazing memories with her. I wouldn't trade her for anyone. She is the most passionate and compassionate person I know.
I plan on many more years of memory making with her.

30 August 2006

Playing Dad

--- This is an old draft that I thought I would post anyway.

Fact! 97% of men with CF have infertility. Essentially it is caused by congenital absence of the vas deferens. The boys are there, they are just stuck there... no exit tunnel.

JG and I have decided that at this point we probably won't be having any children. Now before you go all crazy on me about adoption, etc, please realize that this is a decision that we did not come to lightly, and we feel inspiration from above that it is the correct choice that we have made. That said we had a pretty eventful weekend a little while ago when we took some kids with us on a road trip. We took a nephew and niece on a road trip for 3 days to visit some other family members. Their parents were having a hard time just a little ago, and split up for about a month. Luckily they are back together, but it was very stressful for the 4 and 6 year olds, because JG's schooling is on children and psycho-social she is very aware of these things and so we decided that they needed a vacation.
So for 3 days I got to play dad. It wasn't so bad. But I can see how you would get tired really easily. At one point we were on the freeway and the 6 yo got sick and we had to pull over quickly so he didn't hurl in the car. This was a not such a new experience for me, JG gets car sick all the time, but usually she can control the gag reflex.
Anyway, We enjoyed being with the kids and they were complete angels the whole time.
It will be hard not having our own, but we know that it is the right thing.

Now if we could just stop being frustrated and sad when someone else has a kid... well maybe someday.

21 August 2006

A conversation piece...

Yes it is definitely an attention getter when a 30+ yo male is wearing a bracelet.

This is essentially what I put on my bracelet (with the names changed to protect the innocent.)

I have started wearing it. It freaked my wife out a little. She wanted to make sure I wasn't having premonitions of car accidents or anything like that. I told her no. Since I am not. But I think it hit her panic button a little.
As you know I got it for the trip to Hawaii, which I must say I am very excited for. But I also decided that it would be a great way to bring up CF with others. So far no takers, but I know that there will be some as time moves on. I see people notice it, but so far no one at my new job has the guts to ask.

So the other question to ask is, when people hear me cough, and say, "Bad Cold huh?" Does it make them think when I say, "No, I have Cystic Fibrosis".

Most people just say, ahh! And let it go. But you can bet that they think of it when they see something on the news or read it on the web. Just trying to give a face to the name.

11 August 2006

Step 1 of the 12...

So, my wife and I are trying to decide where to go on our big vacation. Originally we had a cruise scheduled. But it looks like it will land on some bad timing for my work so we have started looking at other locations. We are looking at Fiji, Tahiti, and Hawaii, and also Washington DC. I know it seems like a strange list, but we love DC and the east coast. But I think we will end up on some small island in the South Pacific.
After some thought the other day I thought about my CF, and wondered about things like car accident, or snorkeling issue. What if I and my wife become incapacitated? If the doctors don't know that I have CF, it could be a big problem. I remembered as a kid I had a little medic ID, it had my name, my parents name and my "Problem" Cystic Fibrosis on it. I had it ever since I could remember. I quit wearing it when it became too small. Also now that I am married, I don't think it needs my parents names, but maybe my doctors name.
So I began shopping around for a medic ID. Strangely it was a little traumatic for me. I thought immediately of the 12 step AA program and realized that step 1 was my issue.
The question is, do I really want to admit that I have a problem?
As a child and a teen the bracelet only brought questions. I never was one to hide my CF. Everyone knew I had it. Since a small boy I have been speaking to people about it. I spoke to many High Schools in the area, and even a few churches about living with CF and about the things I have to do to stay alive. But the bracelet brought questions from even just acquaintances. Was I still prepared to be so honest? Could it affect future job possibilities? or other areas of my life?
Admitting that I have CF, can sometimes be hard. Some day's I want to ignore it. There is never a vacation where your lungs work perfectly. There is really only one cure for it. And that is what most of us are trying to avoid.
In the end I decided that safety was the best policy. I have purchased one from American Medical-ID. For me they had the best selection. Having one before helped, since I know that I want a stainless steele one, since they take a beating. Incidentally my tastes are very cheap. It was only about $35. I expedited the order since we could leave as early as the beginning of next month.
I think that I have decided it will be nice to have one again and to have a way to bring it up with more people. The more that know about it or someone with it, the more money it will get. That takes us closer to a second cure.
When it comes I will let you know how it is. Also I will let you know where we decide to go.

09 August 2006

Slowly Slowing Down

So yesterday I was waterskiing and I made a hard decision. I probably won't be doing waterskiing much anymore. This is not the first time that I have limited myself, on a particular activity, but this one is particularly hard. See I have been skiing since I was very little, 7 or so. I love the water and the lakes.

A little background on my current skiing situation...
So about 2 years ago I was skiing at a particularly high point of elevation. When skiing I am going about 15-20 MPH. I realize that this doesn't seem like much, but when skipping across the water on 2 wooden planks it seems a lot faster. As I was jumping back and forth across the wakes, I dipped a ski. If you have ever skied, you know this is fatal. It only takes a split second to be back in the water. So I hit the water at 20 MPH, face first.

This activity is much more enjoyable than sinus surgery, and has about the same effect on the nose. But on this particular day I was not prepared for what followed. As I came up from under the water, which was very cold, I could not breathe. Something in the previous split second had ended breathing for me. The hit of the water knocking the wind out of me? The altitude of this particular lake - 6000 ft? The inhalation of a fair amount of lake water? Possibly the temperature at the time I was there - 70? Probably it was a combination of all these items. Now for someone who is used to not being able to breathe you don't panic much, at least I didn't. But I was very interested in getting my body out of the water. For some reason the pressure of the water on my chest makes it harder to breathe anyway. So as the boat came around, I guess they could see I was turning blue. My beautiful wife was a little worried and the driver of the boat was nearly paranoid. He being a 6' 5" 260 lb guy, basically tossed my 110 lbs soaking wet body into the front of the boat. As he approached to do rescue breathing I was starting to breathe shallow breathes again and began frantically waving my arms in front of my face to keep him from putting his mouth over mine and blowing my lungs out... uck. It was enough trauma to stop breathing I didn't need to have nightmares of another man's lips on mine. Since this first time, it has happened 3-4 times over the last few years.

Luckily yesterday I didn't actually wreck (if not wrecking you can slowly ski to a stop and float relatively gently into the water.) Well I really didn't hardly ski. I only went for about 100 yards or so. I decided in that 100 yards that it wasn't worth it anymore. My wife gets sick with fright each time I go. I have to lug around muscle enough to pull me out of the water each time I go on the boat, just in case. And as much as I love waterskiing, it just isn't worth my life, or the fights, or the stress that everyone gets from it, including me.

So another activity down the drain. I will still go to the lake, and I will still get in the water. But my skiing days are finished. Maybe if the water is bathtub warm, and at sea level I could give it a try. But until I move, that probably isn't going to happen.

So a bit of a downer, but if you still can do things, make sure you enjoy them now. I have no regrets. I skied a lot in the last 20+ years. There are other things that I like also. I will add it to "The List of Former Activities": snowboarding, skateboarding, mountain biking, and scuba diving to name a few.

Someday maybe they will be able to do transplants that work well enough to get back to these activities. Hopefully it will be in time.

07 August 2006

The CF theme song - Is there anyone out there?

So, I am putting my first post up. Lately I have been listening to Maroon 5. A fantastically talented group that first got played by some DJ's here where I live. They have a great theme song for CF, here is the lyrics to "Harder to Breathe".
You can check out a 30 sec clip on iTunes store if you have iTunes installed.

How dare you say that my behavior is unacceptable
So condescending unnecessarily critical
I have the tendency of getting very physical
So watch your step cause if I do you'll need a miracle

You drain me dry and make me wonder why I'm even here
This Double Vision I was seeing is finally clear
You want to stay but you know very well I want you gone
Not fit to funkin' tread the ground that I'm walking on

When it gets cold outside and you got nobody to love
You'll understand what I mean when I say
There's no way we're gonna give up
And like a little girl cries in the face of a monster that lives in her dreams
Is there anyone out there cause it's getting harder and harder to breathe
Is there anyone out there cause it's getting harder and harder to breathe

What you are doing is screwing things up inside my head
You should know better you never listened to a word I said
Clutching your pillow and writhing in a naked sweat
Hoping somebody someday will do you like I did

When it gets cold outside and you got nobody to love
You'll understand what I mean when I say
There's no way we're gonna give up
And like a little girl cries in the face of a monster that lives in her dreams
Is there anyone out there cause it's getting harder and harder to breathe
Is there anyone out there cause it's getting harder and harder to breathe

Does it kill
Does it burn
Is it painful to learn
That it's me that has all the control

Does it thrill
Does it sting
When you feel what I bring
And you wish that you had me to hold

When it gets cold outside and you got nobody to love
You'll understand what I mean when I say
There's no way we're gonna give up
And like a little girl cries in the face of a monster that lives in her dreams
Is there anyone out there cause it's getting harder and harder to breathe
Is there anyone out there cause it's getting harder and harder to breathe
is there anyone out there cuz its gettin harder and harder to breathe

The way he writes is almost synonymous with how all of us have felt at sometime or another about CF... My favorite line is:
Does it kill
Does it burn
Is it painful to learn
That it's me that has all the control

How often do we feel that CF has the control of our lives.
So much of what we do is to calm that beast.
It definitely kills!
Some days it burns!
And most of the time it feels like it has control.
And that can be painful.

But as it says, "There's no way we're gonna give up"

World of blogging

It's not my real name, but it is my real life.