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Showing posts with label fibro. Show all posts
Showing posts with label fibro. Show all posts

16 Years

Posted on 8/03/2011 10:37:00 AM - by Carly Michelle In: , , , , , , , , , , ,
Today is August 3rd.
It marks the 16 year anniversary of my diagnosis with cystic fibrosis.
16 years of countless medications, pills, doctor's appointments, treatments & pain.
Thousands & thousands & thousands of simply everything.
15 or 16 picc lines, a few ER visits, a few hospital visits, a port-a-cath placement, CF related diabetes, millions of dollars raised, and too many, WAY too many dying/passed friends.
In 16 years, I've met amazing people dedicated to curing this disease.
I've gone on my dream vacation to Maui for Make@Wish.
I've been on the show 7th Heaven.
I've personally met Celine Dion.
I've met so many cysters & fibros who understand CF like I do; not as a simple medical definition, but as a demanding and draining lifestyle.
I've heard incredible speeches, & I'll be saying one myself this Saturday.
I've had my fair share of memorable experiences and none of them would've occurred if I didn't have cystic fibrosis. 

SO, in spite of how deeply I hate cystic fibrosis, HATE it with all the passion in my body, I cant still stand here and say that I am blessed. CF has shaped me into the person God meant for me to be. Sixteen years later~ I get it. I'm supposed to be this way. Cystic fibrosis is an external disease. It may damage my lungs, my sinuses, my pancreas, my stomach, my digestion, my breathing, my insulin levels, my liver, and pretty much everything else in my body (since everything is connected in some way or another). But there are some things it will never damage: the bonds I've made, the fulfilling live I've lived [SO FAR!] and the will in my body to fight harder than ever before. Oh, & of course, myhope.

16 years ago today, my parents received a phone call. They drove to the doctor, longing for some clarity as to why their infant was so sick, and they received it. Their daughter was now a part of a statistic, part of a 30,000 person rmy fighting this disease. They were scared. They didn't know what my life would hold; if I would be a skinny, barrell-chested young woman, if I would call the hospital my second home, if I would live a normal life, if I would even LIVE long enough to know what a normal life was life. Sixteen years later ~ I have cystic fibrosis. I fight every dat. I know pain, I know sadness, I have seen my friends die. But hell to the statistics. Hell to a median age of 37 years. I have cystic fibrosis, but cystic fibrosis will NEVER have me. 

I've lived with CF for 16 years now. But this is only the beginning.

RIP all of those who have lost their battle. YOU are my inspiration.

"You don't know how strong you are until being strong is the only choice you have." 

An Abudance of Blogworthy Occurences

Posted on 7/06/2010 09:11:00 PM - by Carly Michelle In: , , , , , , , , ,
 [This was supposed to be posted several days ago, but I've been busy trying to upload photos and such. Sorry guys!]


I have plenty to share with all you SFTM [ShootForTheMoon] followers.


First, I want to acknowledge the Jones Family. In my last post, I disclosed the grave state of Conner Jones, a 7 year old boy who has cystic fibrosis and Prune Belly Syndrome. His whole life has been an enormous fight---PBS is a condition that basically means he has no abdominal muscles. Without abdominal muscles, Conner was unable to cough out any of the mucus in his lungs. Coughing out this mucus is crucial for people with CF, because it rids the lungs of a portion of the mucus and decreases the chances of infection. He passed away on June 25, 2010. Conner is the only person EVER to be diagnosed with both CF and PBS. I did not know the Jones' personally, but I was able to follow Conner's updates, diagnoses, conditions, and lifestyle via his mom, Sarah's, blog. I will post a link to it underneath, but a quick "viewer discretion" : GO GRAB A TISSUE BOX BEFORE READING.


http://notsobrightandshiny.blogspot.com


With that sad news, I shall move on to happier things.


So, as a few of you have noticed, I haven't posted any new posts on here in a couple days. That, my friends, is because I've been inhabiting a log cabin in northern Idaho with my dad, three siblings, grandparents and aunt, and have had no internet connection. Let me just say, that I know it's SUMMERTIME because I can't remember what day of the week it is right now. Each day has been going day-to-day-to-day with some new adventure, and its been awesome.


So a couple days ago (again, I can't remember any dates), we arrived to Idaho after a 12.5 hour drive. Excruciatingly long. My butt has never been so sore. 


That night, we explored the log cabin and all of its taxidermic wonders (believe me, there were a lot), then set off for Yellowstone the next day. We were only 20 or so minutes away from the Yellowstone entrance, so it was kind of a nifty location we were in. In those twenty minutes of driving, we drove through Idaho, Montana and Wyoming. Cool, right?


So for the next two days, we were exploring Yellowstone National Park. Like most of the tourists, we were busy snapping pics of steaming pools and exploding geysers, such as the well-known Old Faithful. In addition to YNP, we went shopping and I bought a pair of moccasins, while my sister, Hannah, bought a cowboy hat. Love 'em.
Old Faithful :)


Our third and last full day in the cabin, all of us (except for my grandparents), went on a horseback ride around Silver Lake, not too far from where we were staying. My horse's name was Desert Rat, or Rat for short. It was the most gorgeous hoseback ride I've ever been on. One minute we'd be walking through the forest, the next we were in the middle of a flower-filled meadow, then we'd be alongside the lake. It was amazing. The funnest part was when Hannah and I would slow our horsies down, then nudge them to make them gallop :).


CL + DR

That night, we had a crazy, crazy thunder storm. There was pink/red lightning that lit up the entire sky. If you want to check it out, I will have a video on my youtube channel sometime soon.


The next morning (this morning), we packed up our stuff and drove south about 5 or 6 hours to Salt Lake City, where we are currently staying. We will be here for just tonight, then we're driving a couple more hours tomorrow.

So yeah, that's my update on our vacation. I don't have much else to say...

OH, yes, I would like to thank Mike Squier real quick for letting me borrow the camera (see last post). I think the pictures I'll develop are going to turn out pretty good! (Let's hope so...)


lovelovelove.

ALSO, I received a text from my wonderful mother, Lori Lindmeier. Turns out, Cayston's been delivered to my house! Yay! :D

Also, I would like to ask a quick favor of all my readers. I want my blog to be "out-there". I want people to know about it. If you guys wouldn't mind, could you pass my URL around to people? Maybe a Facebook link, or an email, or something? I currently have 8 followers. I'm not complaining, I love my 8 followers :D. I just want to spread the word :).

I love all of you guys to pieces, even those of you I don't know. Nobody knows how happy I get inside when an unexpected person comes up to me and compliments me on my blog. It's VERY much appreciated!

Have a great rest of the week, lovelies <3.

Carly

Realizations

Posted on 6/24/2010 09:38:00 AM - by Carly Michelle In: , , , , , , , , , , ,
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

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