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.
Showing posts with label CF. Show all posts
Showing posts with label CF. Show all posts
10 February 2011
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.
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.
16 July 2010
Headache.......and working out.
Started out the morning not feeling well, had a headache. Last night something didn't agree with me at dinner, had a stomach ache.
But woke up with a headache, couldn't decide if it was a sinus headache because of the weather, or a headache from not enough sleep. I laid back down after I got some things done this morning. Felt better when I got up.
Thank God it's Friday and I don't have to get up at 5 am tomorrow.
It also means no workouts til Monday again. Have today then free for the weekend.
Been busting my butt since I started working out again. I feel good when I am working out, but I get discouraged because I don't really ever see results. At least I don't see them, everyone tells me I look good or whatever but I don't see a difference.
This time I'm sticking to it though, because now that I had been working out, then stopped, there really was a difference, I can feel it and see it. So time to get back in the saddle and toughen up. I want my body back.
The body I had before I went on the Depo Provera birth control shot and gained 30 pounds in a matter of a few months. I've been off of it for a little over 3 years, but trust me, that definitely doesn't matter. Still have all the weight. I want to try and lose that too.
Anyone have any good helpful tips or support?
17 June 2010
13 June 2010
Acapella
I finally got my new Acapella the other day, I used it for the first time last night. It has so much more power, it pushes a lot stronger vibration into my lungs than my old one.
I coughed up a lot of mucus. I thought at one point I was going to throw up from how hard I was coughing.
Everyone tells me how surprised and proud they were that I finally made the decision to become a little more independent. I don't blame them, I used to be very determined to not change how things went.
But now that I am, it's making Jerry's life easier and also my life easier. I'm now able to go and spend time with my friends and sleep over their houses.
Just like next week, I'm spending three days at my friend Kendra's house with her two daughters, Leah and Rachel. It's very exciting, it'll be my very first time away from home where I don't need someone there to do my Chest PT, it'll just be me. I've never been able to experience that, now I can.
I'm hoping to post a video at some point of me using my new Acapella. Jerry said he would video tape me using it, so that everyone can see how it works. I mention the Acapella to people, and some CFers have never heard of it. That surprised me. I thought everyone would have known about it. It's similar to the Flutter, you do the same breathing techniques, but it looks a little like the AeroChamber that you would put your inhalers into. Hopefully I can get that video up soon.
I coughed up a lot of mucus. I thought at one point I was going to throw up from how hard I was coughing.
Everyone tells me how surprised and proud they were that I finally made the decision to become a little more independent. I don't blame them, I used to be very determined to not change how things went.
But now that I am, it's making Jerry's life easier and also my life easier. I'm now able to go and spend time with my friends and sleep over their houses.
Just like next week, I'm spending three days at my friend Kendra's house with her two daughters, Leah and Rachel. It's very exciting, it'll be my very first time away from home where I don't need someone there to do my Chest PT, it'll just be me. I've never been able to experience that, now I can.
I'm hoping to post a video at some point of me using my new Acapella. Jerry said he would video tape me using it, so that everyone can see how it works. I mention the Acapella to people, and some CFers have never heard of it. That surprised me. I thought everyone would have known about it. It's similar to the Flutter, you do the same breathing techniques, but it looks a little like the AeroChamber that you would put your inhalers into. Hopefully I can get that video up soon.
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