Thursday, April 10, 2014

7th Clinical Trial & Scan Results!

7th Clinical Trial and Results:

I had my 7th (out of 9) clinical trial today. Glad it is almost done, once it is over I can change some of my meds around. It's hard to believe I've been doing this clinical trial since October! This trial has kept me on my toes. I've been keeping up with my meds and have been compliant with them. With my work schedule it can be a little tought working around the different hours, but overall it has been working out okay. Today, at
the appointment, they put me in a different room. I was in the exercise room, where doc does all the exercise type tests. Looks pretty cool huh.

So now for the results. I'm kinda disappointed that my lung function didn't change. What a bummer, but I guess at least it didn't go down. Doc always says stable is good. But I don't want to think that the 50s is my baseline. But sadly, I think the 50s are my baseline. But that doesn't mean I'm not going to keep working extra hard to see if I can't get it higher. They also looked at the Bone density scan results. The scan consists of a measrement in the hip and one in the back. These are the two numbers they base the density results off of and luckily, my hip was in the normal range! My back was just borderline into the Osteopenia range (which means not into the full blown Osteoperosis). My back being worse may have to do with the congential abnormalities in my back (spine area from my Cerebral Palsy/Birth). That may have a some factor in it, but so far they said I won't need to take any type of supplement for it or anything. We just have to get the scan done every so often to keep an eye on it.

Also, as I mentioned in a previous post I'm going ot have my diabetes test soon. I really dislike the glucose test, I don't even like sweets and I don't drink soda pop. So drinking a thick, sweet, syrup-y type pop (orange) flavored drink is disgusting! EW! I'm getting that done the monday morning after Easter. So starting at 8pm on Easter I need to fast. Luckily, I'll get to eat a huge meal for dinner before that :-) Yay for a holiday right before the test.

I'll let everyone know how that goes! It's crazy to think I'm 29 years old now. I'll be 30 next year! So many different reactions to birthdays. Some people hate getting older. But those reactions are even more varied in the CF community. Some people don't want to get older, cuz our health tends to continue to decrease. Some take each year as a badge of honor ( praise that they made that far). Some cherish them, some fear them. I try not to think about my birthday in that way. It would be terrfiying to think "I'm 30 next year and lfe expectancy is 37 and I'm at 50% lung function..." Um, no thank you.  So instead I tend to just look at it as another day. I love to spend it with my family, but other than that, I don't really care to make a big deal about it. Because I have mixed feelings about my birthdays. I love them, I celebrate them, but still they aren't quite as happy as probably other holidays throughout the year. For example: Thanksgiving, Christmas, Halloween. All these I love so much more than my birthday. I don't like people making a big deal about the fact I turned 29, because I get sort of defensive about it. And I don't even mean to, but I do. I've had people ask my friends how I was doing since High School and are amazed I'm still alive. That's just sad. So when someone celebrates my birthday, I automatically go to defense mode: "Why is it a big deal, you expect me not live much longer, or you surprised I'm still alive". Yep, there's my little attitude shinning through. I don't like people thinking I'm not equal to everyone else, in ANY way or form.

I know I am limited to some extent, but that is for me to decide and figure out. That's why I started just celebrating my birthday the way I wanted to. One year I had some friends just meet up for dinner/drinks. Most years I do board games and hang out with the family. Overall, I don't see my birthday as anything anymore special than anyone elses. I may have to work a little harder to stay healthy and live longer, but nobody has the same life as anyone else. We all have our struggles, medical or not.

However, I'm excited about 30. Next year, I will finally be out of the 20s. :-) If you want to read more about my birthday weekend last weekend (scroll down to see the past posts). Oh, and next appointment on May 8th will be a big one, we are discussing lots! So excited for these changes!


  1. Nobody is guaranteed another birthday, but I can understand your unique sensitivity. I hope you have many, many more birthday's to get bugged about! You're a special person, Cheriz. :o)

  2. Thank you, I think next year's will be extra special. I've always had pretty good birthdays :-)