A Matter of Life and Breath
"Life isn't measured by the breaths we take, But by the moments that take our breath away."
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18 November 2012
...getting admitted.
So, after 5 and a half years, the time has come. I need to be admitted for IV antibiotics. Since June my lung function has dropped 25%. Went from 95% to 70%.
I'm going to be admitted on November 27th. I'm a little nervous, but that's to be expected I guess.
I'm just hoping this will bring my lung function back up to where it was before.
I haven't posted in a long time.
But I suppose I didn't really have much to talk about until now. Health was good, life was okay. My fiance and I had broken up right after Christmas last year, and finally we worked things out a few months ago. We are so much happier, and things are so much better.
But when we were broken up I kind of let my health go, which is probably how I ended up where I am.
Anyway, I will post with updates as I go along. Hoping for a quick and speedy recovery from this.
10 February 2011
Light at the end of the tunnel
Since joining Kate Bush's Lungers United group, I've been thinking more and more of what it was like growing up. When I was growing up I was always told that I had this disease and I had to survive it on my own, that there was no support out there for me. The only support for me was the support from family, and the only problem with that is that family is there with you, but they don't know what it feels like to be you. They don't know how hard it is to breathe, how much pain your body can be in, the constant need to cough.
They know what it's like to see it.
Since social networking became available, it has opened up a world of communication for people with CF. It gives us the opportunity to hear other peoples triumphs and struggles. We know that we are not alone anymore.
We also know now that it isn't so bad spending time together, just as long as we are free of "bad bugs". We can't be afraid of living.
That's what I was always afraid of, I was afraid of living, I was afraid that everything was dangerous.
I'm glad that we have the ability to lean on each other, call on each other when in need of support.
I always say, I would never wish this disease on anyone, but until you have it you just don't get it.
Support from family and friends is always great and welcomed, but sometimes the only support that I want is the support from people who understand.
They know what it's like to see it.
Since social networking became available, it has opened up a world of communication for people with CF. It gives us the opportunity to hear other peoples triumphs and struggles. We know that we are not alone anymore.
We also know now that it isn't so bad spending time together, just as long as we are free of "bad bugs". We can't be afraid of living.
That's what I was always afraid of, I was afraid of living, I was afraid that everything was dangerous.
I'm glad that we have the ability to lean on each other, call on each other when in need of support.
I always say, I would never wish this disease on anyone, but until you have it you just don't get it.
Support from family and friends is always great and welcomed, but sometimes the only support that I want is the support from people who understand.
07 January 2011
ENGAGEMENT!!!!
I'm officially engaged. Jerry proposed on December 23 2010.
I got my real ring today. He had to send it out to get sized.
It's beautiful. :)
I got my real ring today. He had to send it out to get sized.
It's beautiful. :)
30 November 2010
Playing Catch Up
So as you all know, I haven't been online in forever, and I haven't updated in forever either.
So, I had my Clinic appointment on November 19th, and my PFT's were AMAZING, the best they have ever been without the help of IV's. They were 97%.
Haven't had IV's in 3 years. Nothing horrible from Dr. Whittaker, just that I need to exercise more.
My ENT appointment went okay, he said that I will need another sinus surgery eventually to remove some polyps from my nose, but as long as my PFT's stay this good it's not something that needs to be dealt with now. It will need to be done if it starts affecting my PFT's, in the sense that they decline.
So pretty much all good news from them.
Last week got a call from the Women's Center at Fletcher Allen to set up my appointment to meet with the Genetic Counselor. So that's set for December 8th.
This will be our first appointment, don't quite know what to expect, so, if anyone can give me a heads up, please do so.
Thanksgiving went well, was a busy day. We went to my parents in the morning, and then to Jerry's dads in the afternoon.
He went Black Friday shopping.
I'm going Christmas shopping for him this weekend. Pretty excited that Christmas is almost here! Can't believe it!!
Hoping to get on and update a bit more often. Hoping to let everyone know how our Genetic Counseling appointment goes.
So, I had my Clinic appointment on November 19th, and my PFT's were AMAZING, the best they have ever been without the help of IV's. They were 97%.
Haven't had IV's in 3 years. Nothing horrible from Dr. Whittaker, just that I need to exercise more.
My ENT appointment went okay, he said that I will need another sinus surgery eventually to remove some polyps from my nose, but as long as my PFT's stay this good it's not something that needs to be dealt with now. It will need to be done if it starts affecting my PFT's, in the sense that they decline.
So pretty much all good news from them.
Last week got a call from the Women's Center at Fletcher Allen to set up my appointment to meet with the Genetic Counselor. So that's set for December 8th.
This will be our first appointment, don't quite know what to expect, so, if anyone can give me a heads up, please do so.
Thanksgiving went well, was a busy day. We went to my parents in the morning, and then to Jerry's dads in the afternoon.
He went Black Friday shopping.
I'm going Christmas shopping for him this weekend. Pretty excited that Christmas is almost here! Can't believe it!!
Hoping to get on and update a bit more often. Hoping to let everyone know how our Genetic Counseling appointment goes.
Labels:
CF,
Christmas,
Clinic,
ENT,
Genetic Counseling,
PFT,
Shopping,
Thanksgiving
03 September 2010
Clinic Appointment--August 20, 2010
I had my clinic appointment on August 20th. This is the first time I've been able to get online to post about it.
It went great!!
My PFT's went back up. They went from 91% to 94%. So we've officially ruled out the Generic Zithromax as the cause to the decrease back in May from 96% to 91%.
We've decided that the cause of the drop back in May was due to allergies or the weather.
So thankful that my numbers went back up and I am healthy.
I will admit I was a little nervous, a little concerned that they may have decreased more, but when I was blowing mid 90's on the screen it felt good. It made me really happy. :)
Jerry was really happy and proud of me too.
Dr. Whittaker-LeClair came into the room asked me the regular questions and felt my stomach and that was the extent of the appointment. My 6 month is in November and before I go to it, I have to get my yearly Glucose Screening done.
I hate those. :(
You have to drink this horrible sugar drink, I usually get the Lemon-Lime one, it tastes like really flat Sprite. But the worst part, is the having to sit for 2 hours at the hospital, I can't leave.
But I drink the drink, sometimes they draw blood at the hour mark, sometimes they don't, but they always draw blood at the end of the 2 hours. Then I can leave.
It was a pretty good day overall, and I'm really proud of myself, and how healthy I've been staying.
It went great!!
My PFT's went back up. They went from 91% to 94%. So we've officially ruled out the Generic Zithromax as the cause to the decrease back in May from 96% to 91%.
We've decided that the cause of the drop back in May was due to allergies or the weather.
So thankful that my numbers went back up and I am healthy.
I will admit I was a little nervous, a little concerned that they may have decreased more, but when I was blowing mid 90's on the screen it felt good. It made me really happy. :)
Jerry was really happy and proud of me too.
Dr. Whittaker-LeClair came into the room asked me the regular questions and felt my stomach and that was the extent of the appointment. My 6 month is in November and before I go to it, I have to get my yearly Glucose Screening done.
I hate those. :(
You have to drink this horrible sugar drink, I usually get the Lemon-Lime one, it tastes like really flat Sprite. But the worst part, is the having to sit for 2 hours at the hospital, I can't leave.
But I drink the drink, sometimes they draw blood at the hour mark, sometimes they don't, but they always draw blood at the end of the 2 hours. Then I can leave.
It was a pretty good day overall, and I'm really proud of myself, and how healthy I've been staying.
Labels:
CF,
Clinic,
Glucose Screening,
PFT
21 July 2010
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