Wednesday, February 24, 2010

Ready to go public

I started this blog a few months ago when a I needed a place to jot down some emotions I wasn't ready to share with all my friends and family. I knew that eventually I wanted this to be my "CF blog" where I get to really delve into the heartbreaking, funny, stressful, embarrassing (and the list goes on...) aspects of this illness. I also hoped that someday it could be a place where I could branch out and network more with other CFers.
Well, I still don't have very many original posts,but I copied some from my family blog that had to do with CF, so the order or context might be a little confusing, but hopefully they will give you (you being the readers I might someday have, if anyone other than my sister ever reads this :) ) more of an idea about me. I don't make any promises about how often I'll post, but feel free to check in once in a while!

Thursday, February 11, 2010

It's just nice to know...

For those of you who don't know, my daughter, Halle, is adopted. In our family we are big fans of adoption and my husband and I have been discussing starting the process again in hopes of adopting a second baby.

I was really worried, however, as I was last time as well, that because of my CF that we would have difficulty getting approved for adoption. A big part of the application process is a form that needs to be filled out by your doctor discussing health in regards to being able to raise and care for a child. Last time we went through this process my health was a little better and the doctor had no trouble filling out the form. I was worried this time what my new CF doctor would have to say.

Well, I had an appointment today ( by the way, FEV1 72%, which is down from the 79% last time, but I feel pretty good regardless) and the talk with my doctor went really well. It was so nice, after all these weeks of worrying what she would say, to have her be so positive about adopting, or even getting pregnant, if that ever became a reality for us. She said I had every reason to expect that I would be around to raise a child, and that was just really nice to hear. I always try to be positive and hope for the best, but I want to be realistic, too. When I am feeling good I think I am invincible, but every time I get sick, those worries that I might not have as much time as I think I do are always lingering in the back of my mind. So it was nice to have an outside perspective, my doctor nonetheless,to validate that I am not illusioning myself (spell check is saying illusioning is not a word. It might be right...) to think that having another baby isn't a foolish, or worse, a selfish idea.

So, I guess we are officially starting the adoption process again. Keep your fingers crossed for us.

Thursday, January 28, 2010

The ugle face of addiction

The first step to recovery is admitting you have a problem

I am addicted to sugar. There, I said it. It is true. I can take or leave cookies, cakes, baked goods, etc. but when it comes to the hard stuff, plain old candy, I have no self control. I love chocolate and caramel and anything chewy and gooey and fruity. The more it gets stuck in your teeth, the better ( I have had a long standing love affair with Red Vines, for example).

Well, for the sake of my pre-diabetic self (because of CF, my chances of being diabetic are greatly increased) and for the sake of my daughter who is starting to follow in her mother's unhealthy footsteps (if I don't want her to eat it, I have to not let her see me sneak the stuff) I set a new year's resolution to kick the habit and say adios to the dulces.

It was going well. Really well. I made several shopping trips without even a passing thought at picking up a bag of Red Vines. I didn't have any candy at home, and wasn't really seeming to miss it. Until yesterday, that is. It hit me like a ton of bricks. I suddenly needed sugar. I had to have it. I had visions of peach rings and skittles dancing in my head, and I swear, I think I had the shakes.

And that's when I remembered the chocolate chips that had been left over after Christmas baking. I won't share all the detail of what happened, but I will tell you it was ugly. And continued to be ugly all afternoon. When Chris got home I confessed what I had done and resolved to get back on the wagon, but here it is, late afternoon again, and those chocolate chips were literally calling to me from within the cupboard. I would like to say that I did not succumb, but that would be a falsehood.

I finally decided that I have a few options: 1) give up my resolution, 2) eat all the chocolate chips today so they won't be there to tempt me tomorrow, or 3) get rid of the chocolate. With all the will power I possess, I decided on number 3. I knew I couldn't just throw them away. I would inevitably get them back out. Disgusting... I know. Flushing them down the toilet would have been effective, but visually disturbing. The outside trash was too far away and I was worried that I would loose my resolve while trekking through the snow get to it. So, I did the only thing I could think of and threw the bag out in the snow.

And so, there they sit. They are outside the window looking at me right now. But I am not worried or even tempted because I know that the one thing stronger than my love of candy is my dislike of the cold and snow. I know myself well enough to know that not even the idea of satisfying my sugar fix will entice me to get my boots on and go outside to retrieve those precious, precious chocolate chips. So they will sit there untouched until Chris gets home and I make him go throw them away.

So, there you have the whole of my ugly and embarrassing addiction with all the strange things it has compelled me to do. I have no explanation and I make no excuses. All I can say for myself is that I have been "sober" now 34 minutes and counting....

Go straight to jail. Do not pass GO. Do not collect $200.

That's what it feels like sometimes. I am just minding my own business, trying to live my life and then, BAM! I am back in the clink and everything is on hold.

I am in the hospital again. It's the fifth time in a year and a half and in spite of the personal trainer, massage therapist, and room service, I'd rather be home. I miss my hubby and I miss my baby. With swine flu precautions visiting is very restricted so I won't get to see them much. Hopefully, though, I will only be here for a week this time and then I will do IV' s at home for a week.

It's always frustrating to be back in here, but I have been thinking of some things the past couple of days that make me realize even in the difficulties there are blessings. So, this is my pre-Thanksgiving post: Three things this hospitalization made me grateful for.

1. We didn't realize when Chris decided to do a PhD how perfectly it would accommodate our families needs. His program is fairly flexible, the professor he's working with is super understanding, and Chris has been able to spend much of the past two days at home with Halle. Even once he is a professor, he will have a few classes, but mostly he will be doing research, which, although it is busy and requires a lot of time, it can be done on his timetable. He will be able to work around my hospitalizations better than he could in most other professions. Heavenly Father knew we would need that and I think that is part of why we were directed towards this career.

2. I have an amazing extended family who are super supportive and willing to help in anyway possible. Chris's sister, Emily, is coming from Oklahoma to stay for a week while I am here. She is bringing her 1-year old, Isa, so Halle will have someone to play with. I am pretty sure they will all be partying at home without me, but I am super grateful that she'll be there.

3. Insurance is the bane of my existence. Chris and I have spent many frustrating hours on the phone playing the insurance game and there have been times when I couldn't get the care I needed because of poor insurance. So, we are very grateful that we have good insurance that is going to allow me get the care I need. Now, no claims have been filed yet, so I hope I am not speaking prematurely,or maybe jinxing us, but I really think we'll have an easier time with insurance here.

Oh, I guess #4 would be that I didn't miss any holidays. I was home for Halloween and got to take Halle trick-or-treating, and I will be home for Thanksgiving, so it is relatively good timing.

So, things could be better, but they could be a lot worse. I guess we'll just take what we're given and make some lemonade...anyone want a glass?

Tuesday, January 26, 2010

A brief tirade

I met a friend. Her name is Cindy. We met here in the hospital and we will never get to be "real" friends because she also has CF and they don't let CF people hang out together, but she is my new email/blogging friend. And she has inspired me to do something a little out of character. Here goes:

I hate CF. I hate being in the hospital. I hate my treatments and pills and doctor appointments. I hate all the vacations we have cancelled because I am in the hospital. I hate that my daughter has spent over two months of her short life without a mother at home. I hate Chris sleeping alone at night and I hate his super positive, always supportive "we'll do whatever it takes to make mommy better" attitude (Actually I love and appreciate that. I just hate that he has to be so strong. Go ahead babe, have a break down. I'm doing it.)

I hate the uncertainty of the future, and even the uncertainty of the present. I hate getting poked and I hate hospital food. I hate coughing and I hate that I hate hiking. And I hate that Cindy and I can never be "real" friends.

Now, lest you think this new friend is a bad influence on me, I need to say that she seems able to vent in a way that a little less angry, a little more "let's look at the silver lining" which would normally be my approach as well. But today, for once, this way seemed a little more appropriate.

And...ahh, I feel better already

Monday, January 25, 2010

Happy Birthday, Shannan

Today is my sister's birthday. She would be 31, if she were alive. Shannan passed away in 1993 from cystic fibrosis. She was 14, and I was 12. She was my best friend and I still miss her and have always felt a loss for the relationship that we never got to have. But what a better way than on her birthday to share my belief that I will see her again. I know that when my time comes and I pass to the other side she will be there, among the first ones to greet me and welcome me home. I look forward to giving her a big hug and getting to know my sister again. I have a best friend waiting there for me. I love you Shannan. Happy Birthday.

Tuesday, November 24, 2009

Home, sweet home

Well, I am home from the hospital. I actually got home a week and a half ago, after only 10 days in the hospital. It is so good to be home. As hard as it is to be there, it sure makes me appreciate Chris and Halle so much once I am with them again. I love spending time with my family and I love being a mother. I cherish those blessings in a more acute way, I guess, after getting home from a hospital stay.

I am feeling great. My PFT's, (lung function) which were 55 when I had my clinic visit, a week before being admitted, were up to 78% after a week of IV's. They didn't do them again when I went home, but I went home on strong oral antibiotics for another week, so I am hoping that they maybe even made it back up to 85%. That would be great, because 80% is the highest they have been in a long time. I have an appointment in a couple of weeks, so we'll see what they are then. Chris always tells me that if they are 80% or above, I get to go clothes shopping, so wish me luck!

This hospitalization was interesting,being my first one here in Ohio. The CF center is housed in a Children's hospital (which isn't all that uncommon. Until recently, CF was only a children's disease, as not many people lived to adulthood. Even though that has changed a lot in recent years, a lot of adults are still treated in children's hospitals). That made for some interesting procedures and protocol, such as phones being shut off after 10:00 and a lights out at midnight policy. Instead of drawing blood from your arm, they do everything with a finger poke, and then they squeeze and squeeze your finger until they get enough blood to fill up a vial. Apparently, the kids like it better, but let me tell you, a finger poke is sore for weeks afterward. I finally told them "no more finger pokes! Get someone in here to draw my blood like I am a grown up!" ( I was actually kind of a baby about it...but they really hurt!)

There were some positives, however, as well. For example, when I had to drink Barium dye (which is normally awful and almost makes me puke) for a procedure I had done, I was given the choice of Chocolate or Strawberry flavoring. The chocolate was actually quite delicious. And the bandaids were always very bright and colorful (as opposed to the cotton ball with tape over it that I get at the U of U).

Another thing, that I am not quite sure what to make of, is that people frequently assumed I was young enough to be a teenage patient in the children's hospital. Maybe I should take it as a compliment. I mean, I am getting to the age where looking younger isn't such a bad thing anymore, but I think I would at least like to look mid-twenties maybe. Even if only so they didn't pass judgment when I mentioned that I had a baby.

Another interesting aspect of my stay was the med student who came to see me everyday. Some people shouldn't be allowed to interact with patients! After seeming really long and often offensive at first, her visits soon became one of the highlights of my day, as I couldn't wait to hear what would come out of her mouth next. Here was one of my favorite conversations:

Her : "Do you know why they wanted to do the upper GI scan?"
Me: "They said they just wanted to follow up on some things they found in the ultrasound."
Her: "Okay. Well, let me just say that in medical lingo "follow up" can mean a couple of things. First, it could mean that they didn't get enough information and would like take a more in-depth look. Or, and this tends to happen a lot in a children's hospital, where doctors hate to be the bearer of bad news, it could mean that there is something really wrong and they
don't want to be the one to tell you."
Me: "umm...thanks."

Ya...she was a real gem, bless her heart.

Some of you may know that my little sister, Jenny, is also currently in the hospital (for CF as well). She was pretty sick when she went in, but is finally starting to feel a little better and is hoping to be back home with her hubby and baby for Thanksgiving. We appreciate all your thoughts and prayers in behalf of our family during these past few weeks.

We hope each of you have a a Happy Thanksgiving and that you get to enjoy it with friends, or family, or people you love.