Hey everyone! Just a quick update. I went to my CF doctors a few weeks ago and overall it was a good report. I got my flu shot too. I am in the midst of lots of coughing and sneezing in the last week or so. That's no fun, but I know I'm not alone this time of year!
Now, moving on... I wanted to do some special things this year for my birthday and one of the things I want to do is give the gift of clean water to those who need it very badly. This project isn't meant for me alone, but for all of you to join in. I found a website that does exactly what I was thinking of and, best of all, 100% of the proceeds go directly to installing the clean water source. When I registered my site, it was indicated that it would be placed in either Ethiopia or Cambodia. What a great way for a group of people to come together and help others, not only now, but for generations!
If you feel led to give, please visit here: "You Shall Not Thurst" Clean Water Campaign
You may give with Credit Card, Debit Card or by using your Checking Account information. If you prefer not to give online but would like to participate, I am collecting donations and will donate on your behalf. Contact me in the "Contact Jen" section to the right if you need to. If you decide to give $1 or $100, I will be equally ecstatic! I would love for lots of people to participate. What a great opportunity that will make a difference in people's lives for generations! And by donating, you can say you were a part of making this difference.
After the water source is complete, the Water Team will email you an update with information. Even its GPS coordinates! Please consider donating. Even if it's just a dollar!
The holidays are just around the corner. I hope all of you stay safe and have a great time with family and friends. Please remember the real reason for the season: JESUS!
Tuesday, October 22, 2013
Saturday, August 10, 2013
Cystic Fibrosis Caucus
My meeting was scheduled very quickly with Representative Rodney Davis. In fact, it was the day after my last post! He came to town and I met with him and an assistant of his privately. I was very appreciative of his time and that he didn't rush me or make me feel like I was "just another person". He was supportive of CF research and was already a member of the Rare Disease Congressional Caucus. He also said that he will join the Cystic Fibrosis Caucus as well. Thank you Mr. Davis for your time and for promoting Cystic Fibrosis awareness. It is greatly appreciated.
If you are interested in being an advocate for Cystic Fibrosis, here is a link that will give you basic steps on how to get the word out about the importance of CF research and support that is needed - CF Advocate . Remember, only about 30,000 people in the United States have been diagnosed with Cystic Fibrosis and 70,000 worldwide! CF'ers like me need your help, so please consider it.
I appreciate everyone who supports me and other CF'ers no matter the way you show your support (prayers, advocacy, monetary donations, cards, emails, etc.). It's all very much appreciated and a promise that I will get to live longer days which will include more healthy breaths.
To view Jen's full blog and/or to contact: Jen's Breath of Life
If you are interested in being an advocate for Cystic Fibrosis, here is a link that will give you basic steps on how to get the word out about the importance of CF research and support that is needed - CF Advocate . Remember, only about 30,000 people in the United States have been diagnosed with Cystic Fibrosis and 70,000 worldwide! CF'ers like me need your help, so please consider it.
I appreciate everyone who supports me and other CF'ers no matter the way you show your support (prayers, advocacy, monetary donations, cards, emails, etc.). It's all very much appreciated and a promise that I will get to live longer days which will include more healthy breaths.
To view Jen's full blog and/or to contact: Jen's Breath of Life
Wednesday, August 7, 2013
August Update
Two months later and I'm still getting in medical bills from the "unnecessary" emergency room visit from two months ago. I'm sure some of you can relate to this kind of experience. I'm very thankful that I have insurance that helps cover a portion of it. For what little time and treatments I received, I can't believe the cost it has amounted too.
A good neighbor friend of ours brought over an article from "Discover Magazine" regarding updates on Cystic Fibrosis research and new medicines in the works (Sept 2013 issue). It's a good read if you have time and are interested in the developments taking place. I recently sent a request to meet with my State Representative to discuss my concerns about Cystic Fibrosis and continuing funding and healthcare coverage. I am currently waiting to hear back from him.
I can't believe it's August already! This summer has by far been the fastest one I can remember....yes even from when I was a kid in school. :) I hope that all of you have been able to get some free time with friends and family.
I know most readers of this blog receive it by email, but if you wanted to contact me, please go to my blog page and look on the right side of the screen for a form to email me. I'd love to hear from you. Even if I've never met you! Click: Jen's Blog. As usual thank you for all the thoughts and prayers. Jen :)
A good neighbor friend of ours brought over an article from "Discover Magazine" regarding updates on Cystic Fibrosis research and new medicines in the works (Sept 2013 issue). It's a good read if you have time and are interested in the developments taking place. I recently sent a request to meet with my State Representative to discuss my concerns about Cystic Fibrosis and continuing funding and healthcare coverage. I am currently waiting to hear back from him.
I can't believe it's August already! This summer has by far been the fastest one I can remember....yes even from when I was a kid in school. :) I hope that all of you have been able to get some free time with friends and family.
I know most readers of this blog receive it by email, but if you wanted to contact me, please go to my blog page and look on the right side of the screen for a form to email me. I'd love to hear from you. Even if I've never met you! Click: Jen's Blog. As usual thank you for all the thoughts and prayers. Jen :)
Wednesday, June 19, 2013
Things are getting better
Many of you probably have heard that little Sarah Murnaghan received a successful lung transplant last week. How awesome for her is that? Her mother reports that she is still in the ICU and doing well so far, but it is still a long road for her. Thanks for all the prayers for Sarah and her family.
I, myself, am doing well and am a little over half way done with my Cipro antibiotics. The medicine is so gross tasting as soon as it touches my tongue that I had to come up with an idea to get it down without gagging! Finally I tried some salteen crackers. I rub the salty side of two crackers all over my tongue and it masks the taste. Thank God because I felt like a little kid and wanted to hide when it was medicine time...
My coughing has lessened a great deal and besides the side effects of the medicine (stomach issues and feeling tired/dizzy at times), I'm feeling pretty darn good.
Thank you to all who have subscribed to my postings and that are passing the word along about this blog. Have a great rest of the week!
I, myself, am doing well and am a little over half way done with my Cipro antibiotics. The medicine is so gross tasting as soon as it touches my tongue that I had to come up with an idea to get it down without gagging! Finally I tried some salteen crackers. I rub the salty side of two crackers all over my tongue and it masks the taste. Thank God because I felt like a little kid and wanted to hide when it was medicine time...
My coughing has lessened a great deal and besides the side effects of the medicine (stomach issues and feeling tired/dizzy at times), I'm feeling pretty darn good.
Thank you to all who have subscribed to my postings and that are passing the word along about this blog. Have a great rest of the week!
Monday, June 10, 2013
Emergency Room Trip
For those of you that haven't heard, little Sarah Murnaghan is now eligible to receive a lung transplant using an adult lung. This is terrific news! However, the doctors say that she may only have even as little as a few weeks to live if a transplant doesn't happen soon. She has already been waiting 18 months. So, you know what to do...
As for me, I had a little scare last Thursday night. At around 9PM I started coughing a little (nothing unusual) and all of a sudden coughed up a little blood. Gross I know, but it happens at times. Since I cough all the time anyway, vessels in my lungs are often weakened and sometime burst causing that to happen. Long story short, I went to the ER in town who took blood and did xrays. Then the doctor came back and said that he saw something "not right" on the xray and that I needed to be ambulanced to Barnes. That's when the really long night started. After being up since 5:30 that morning, my day (and hubby's) ended up going until about 6PM the next day! We both only got about an hour of sleep or so in that period of time. Plus, me being me, as soon as I got home at 2PM Friday I took a shower and headed to work for 2 hours! : ) That was my choice...
After arriving around very early morning on Friday in St. Louis at Barnes-Jewish Hospital, they then started THEIR blood work and xrays. I also did a Pulmonary Function Test (PFT) and scored only a few percentage points lower than 3 months ago. So with the data the doctors collected, they ruled out that it was Pneumonia and just called it a slight lung infection. That doesn't really surprise me since I've been coughing since March. I am very grateful for the "easy" fix and pray it continues to work well.
The doctors prescribed 750mg of Ciproflaxin twice a day for 21 days. This stuff is pretty strong, looks like a horse pill, and tastes like poison. I literally want to puke thinking about how bad it tastes when it touches my tongue. It's awful and starts disintegrating immediately when it touches anything wet. I can't have dairy too close to taking it, must drink a lot of water, blah blah...yuck. I am feeling better though with the exception of the side effects of the Cipro.
It's amazing how fast fear can creep into a situation. When the doctor said I needed to be hospitalized you would have thought my head heard "get ready to kick the bucket". I had to remind myself that everything would be ok and that "God has this". When I was laying in the hospital bed it was the weirdest thing, but I kept hearing a full instrumental version of "Amazing Grace" playing. I mean signers and all! I'm very grateful that I was not required to stay the normal 3 day to 3 week hospitalization that many CFers are forced to do in order to continue living. Ten year old Sarah has been in the hospital for over 100 days.
So the lesson today? Don't let fear over take you because it acts like a mudslide or quicksand. Fear can take over very quickly and consume you! Also, realize how important your life is. Mend those broken friendships, pursue your life goals and ask God to change that bad attitude or habit that you struggle with while there is still "time". Appreciate everyday and every breath because you don't know when the last one will be here and gone.
1 Corinthians 16:13
As for me, I had a little scare last Thursday night. At around 9PM I started coughing a little (nothing unusual) and all of a sudden coughed up a little blood. Gross I know, but it happens at times. Since I cough all the time anyway, vessels in my lungs are often weakened and sometime burst causing that to happen. Long story short, I went to the ER in town who took blood and did xrays. Then the doctor came back and said that he saw something "not right" on the xray and that I needed to be ambulanced to Barnes. That's when the really long night started. After being up since 5:30 that morning, my day (and hubby's) ended up going until about 6PM the next day! We both only got about an hour of sleep or so in that period of time. Plus, me being me, as soon as I got home at 2PM Friday I took a shower and headed to work for 2 hours! : ) That was my choice...
After arriving around very early morning on Friday in St. Louis at Barnes-Jewish Hospital, they then started THEIR blood work and xrays. I also did a Pulmonary Function Test (PFT) and scored only a few percentage points lower than 3 months ago. So with the data the doctors collected, they ruled out that it was Pneumonia and just called it a slight lung infection. That doesn't really surprise me since I've been coughing since March. I am very grateful for the "easy" fix and pray it continues to work well.
The doctors prescribed 750mg of Ciproflaxin twice a day for 21 days. This stuff is pretty strong, looks like a horse pill, and tastes like poison. I literally want to puke thinking about how bad it tastes when it touches my tongue. It's awful and starts disintegrating immediately when it touches anything wet. I can't have dairy too close to taking it, must drink a lot of water, blah blah...yuck. I am feeling better though with the exception of the side effects of the Cipro.
It's amazing how fast fear can creep into a situation. When the doctor said I needed to be hospitalized you would have thought my head heard "get ready to kick the bucket". I had to remind myself that everything would be ok and that "God has this". When I was laying in the hospital bed it was the weirdest thing, but I kept hearing a full instrumental version of "Amazing Grace" playing. I mean signers and all! I'm very grateful that I was not required to stay the normal 3 day to 3 week hospitalization that many CFers are forced to do in order to continue living. Ten year old Sarah has been in the hospital for over 100 days.
So the lesson today? Don't let fear over take you because it acts like a mudslide or quicksand. Fear can take over very quickly and consume you! Also, realize how important your life is. Mend those broken friendships, pursue your life goals and ask God to change that bad attitude or habit that you struggle with while there is still "time". Appreciate everyday and every breath because you don't know when the last one will be here and gone.
1 Corinthians 16:13
Be on your guard; stand firm in the faith; be men of courage; be strong.
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