Hey guys,
There are a couple things I wanna share in this post. First I shall share this week of my existence with you, then some thoughts and a request from me to everyone.
So a couple days ago, I was with Mike Squier. He's the photographer for Ambry Genetics, and is, in my mom and mine's opinion, the best photographer we've seen. He has an amazing eye and incredible talent. Not only that, but he's a great videographer. Anyways, I'm not going to disclose what we did with him, because I'm not sure he'd want me to tell.
Click here and check check check him out.
Here's another reason I love him:
I told him how on Thursday (today) I was leaving on a road trip to Yellowstone. He noticed I have recently taken an interest in photography (nothing crazy, I just like taking pictures). I have a Nikon point-and-shoot camera, so nothing incredibly fancy, but not some cheap digital camera. I love my camera. Anyways, Squier offered to let me borrow one of his old Nikons! It takes film, and its a LEGIT camera that comes in a special case with lenses and all. I'm seriously SO excited! I have pictures of it, which I will post later. In currently in the middle of nowhere so I have a feeling uploading pics dependent on a Sprint WiFi air card will take forever. Anyways, he told me it was his first camera he ever purchased on his own. Do you guys realize how special this camera is? I personally have a love for sentimental items (maybe that's why my room is full of so much unnecessary crap). I feel so honored that he lent me this one, and I'm flattered that he trusts me so much! I can't wait to shoot some awesome pics. Love you, Squier!
Alright, so like I said, me and my Dad's side of the family left for Yellowstone today. Actually, Yellowstone is just our main destination. We left at 5:30am this morning, and will be traveling a total of 10 days. We're going to be in St. George, Utah tonight. Among the places we will be staying are Utah, Idaho, Montana, Wyoming, and Nevada. Super duper excited :). I'm able to get internet because, like I had mentioned, my lovely father acquired a Sprint Air Card that plugs into the USB port on my laptop and connects me to the internet.
Also this week, I had a CF follow-up appointment. I finished my oral antibiotics this week, but based on my PFT's, I'm continuing my inhaled TOBI (ewww). They were up from last time a few pecent (from mid 80's to mid & high 80's). I am returning to my baseline, slowly but surely. They're keeping my on TOBI in order for my to return to the 90's.
When I'm sick, my PFT's are usually in the 60's and 70's. When I see those numbers, I want to boost my numbers back to the 80's and 90's. My mom, who is my rock and my support line, freaks out. Not in a bad way, but in a way that says "hey Carly, you're sick. Let's fight this bug". Next time this happens, I'm not going to deny that I'm sick, but I don't want to make a huge deal about it. I know that there is a fine line between making it less of a deal and acting careless. I am NOT going to be careless, I will fight the bug like I would normally, and be as passionate as I usually try to be. I don't even know if this is all making sense. I guess what I'm trying to say is that there are people with CF who would be thankful to have the PFT's I have. In fact, many would be glad to have 60's and 70's.
There are thousands of cysters and fibros living on the transplant list. Thousands living on several litres of oxygen daily. Thousands hospitalized on a regular basis. Yes, a lot of them are in this situation because they aren't as proactive about their health as they should be, but some aren't. Some work as hard as me, but still end up that way. I just feel like I have a reason to be thankful. Thankful for my mom who pushes me to my wit's end, thankful for a distressed, yet functional pair of lungs, thankful for the ability to live a generally normal life. Yes, I give up a lot of time to take care of myself, and I miss school and events when I'm sick or have doctor's appointments, but I am relatively living like a teenage girl. I am thankful for my God, who gives me faith.
This whole spiel is leading me to talk about somebody (actually a whole family) that's been on my mind for a while. Sarah Jones is the mother of Conner, who has both cystic fibrosis and a rare condition called Prune Belly Syndrome that causes him to lack any abdominal muscles. He is the only one ever to be diagnosed with these two conditions. Do you all realize how terrible a combination those two diseases are? Conner is UNABLE to cough out anything from his lungs, because he has no abdominal muscles. His mom blogs about his condition on a regular basis. I will post a link to her blog, "Not So Bright and Shiny" , but I must warn you all, it is incredibly hard to read. This last post, posted yesterday, was one of the saddest blogs I've ever read. I was crying the whole time. She basically has blogged to everybody about the probable possibility of her son's death arriving soon. If you read older posts from her, you can tell that the death of Conner has been a constant thought that's been hovering over the entire famly since his birth. He is seven years old.
All I ask is that you pray for the Jones Family during this difficult time in their lives. Pray that whatever God's Will be for Conner, whether it be constituting a miracle for this sweet boy or having him live with the Lord, that the process be painless and easy for him. Pray that somebody cure these diseases.
Thank you all. I do not know this family personally, but Sarah's blog is somewhat popular in "the CF world", so she is in the hearts of a lot of us cysters and fibros.
I love you guys!
Carly
There are a couple things I wanna share in this post. First I shall share this week of my existence with you, then some thoughts and a request from me to everyone.
So a couple days ago, I was with Mike Squier. He's the photographer for Ambry Genetics, and is, in my mom and mine's opinion, the best photographer we've seen. He has an amazing eye and incredible talent. Not only that, but he's a great videographer. Anyways, I'm not going to disclose what we did with him, because I'm not sure he'd want me to tell.
Click here and check check check him out.
Here's another reason I love him:
I told him how on Thursday (today) I was leaving on a road trip to Yellowstone. He noticed I have recently taken an interest in photography (nothing crazy, I just like taking pictures). I have a Nikon point-and-shoot camera, so nothing incredibly fancy, but not some cheap digital camera. I love my camera. Anyways, Squier offered to let me borrow one of his old Nikons! It takes film, and its a LEGIT camera that comes in a special case with lenses and all. I'm seriously SO excited! I have pictures of it, which I will post later. In currently in the middle of nowhere so I have a feeling uploading pics dependent on a Sprint WiFi air card will take forever. Anyways, he told me it was his first camera he ever purchased on his own. Do you guys realize how special this camera is? I personally have a love for sentimental items (maybe that's why my room is full of so much unnecessary crap). I feel so honored that he lent me this one, and I'm flattered that he trusts me so much! I can't wait to shoot some awesome pics. Love you, Squier!
Alright, so like I said, me and my Dad's side of the family left for Yellowstone today. Actually, Yellowstone is just our main destination. We left at 5:30am this morning, and will be traveling a total of 10 days. We're going to be in St. George, Utah tonight. Among the places we will be staying are Utah, Idaho, Montana, Wyoming, and Nevada. Super duper excited :). I'm able to get internet because, like I had mentioned, my lovely father acquired a Sprint Air Card that plugs into the USB port on my laptop and connects me to the internet.
Also this week, I had a CF follow-up appointment. I finished my oral antibiotics this week, but based on my PFT's, I'm continuing my inhaled TOBI (ewww). They were up from last time a few pecent (from mid 80's to mid & high 80's). I am returning to my baseline, slowly but surely. They're keeping my on TOBI in order for my to return to the 90's.
When I'm sick, my PFT's are usually in the 60's and 70's. When I see those numbers, I want to boost my numbers back to the 80's and 90's. My mom, who is my rock and my support line, freaks out. Not in a bad way, but in a way that says "hey Carly, you're sick. Let's fight this bug". Next time this happens, I'm not going to deny that I'm sick, but I don't want to make a huge deal about it. I know that there is a fine line between making it less of a deal and acting careless. I am NOT going to be careless, I will fight the bug like I would normally, and be as passionate as I usually try to be. I don't even know if this is all making sense. I guess what I'm trying to say is that there are people with CF who would be thankful to have the PFT's I have. In fact, many would be glad to have 60's and 70's.
There are thousands of cysters and fibros living on the transplant list. Thousands living on several litres of oxygen daily. Thousands hospitalized on a regular basis. Yes, a lot of them are in this situation because they aren't as proactive about their health as they should be, but some aren't. Some work as hard as me, but still end up that way. I just feel like I have a reason to be thankful. Thankful for my mom who pushes me to my wit's end, thankful for a distressed, yet functional pair of lungs, thankful for the ability to live a generally normal life. Yes, I give up a lot of time to take care of myself, and I miss school and events when I'm sick or have doctor's appointments, but I am relatively living like a teenage girl. I am thankful for my God, who gives me faith.
This whole spiel is leading me to talk about somebody (actually a whole family) that's been on my mind for a while. Sarah Jones is the mother of Conner, who has both cystic fibrosis and a rare condition called Prune Belly Syndrome that causes him to lack any abdominal muscles. He is the only one ever to be diagnosed with these two conditions. Do you all realize how terrible a combination those two diseases are? Conner is UNABLE to cough out anything from his lungs, because he has no abdominal muscles. His mom blogs about his condition on a regular basis. I will post a link to her blog, "Not So Bright and Shiny" , but I must warn you all, it is incredibly hard to read. This last post, posted yesterday, was one of the saddest blogs I've ever read. I was crying the whole time. She basically has blogged to everybody about the probable possibility of her son's death arriving soon. If you read older posts from her, you can tell that the death of Conner has been a constant thought that's been hovering over the entire famly since his birth. He is seven years old.
All I ask is that you pray for the Jones Family during this difficult time in their lives. Pray that whatever God's Will be for Conner, whether it be constituting a miracle for this sweet boy or having him live with the Lord, that the process be painless and easy for him. Pray that somebody cure these diseases.
Thank you all. I do not know this family personally, but Sarah's blog is somewhat popular in "the CF world", so she is in the hearts of a lot of us cysters and fibros.
I love you guys!
Carly
