Showing posts with label Blogging. Show all posts
Showing posts with label Blogging. Show all posts

Thursday, June 17, 2010

"That's Some Cold You Got There"

I pulled this blog with permission from CysticLife as it was one of my favorite that I have read in a while. I've actually featured Lauren's work on here before as she is a VERY talented young cyster in whom I have a GREAT deal of respect for. She has spunk, soul and a never quit attitude that will always put a smile on your face. Please visit her blog here and check out some of her other fantastic writings.


Question-Askers

With CF, coughing becomes almost as natural as breathing. You don't realize how normal it is to you and to the people who know you until you are around someone who doesn't know you. The most common person for me is someone like a new professor, a hair-dresser, or a new colleague. Usually people I just meet will comment “That is some cold you got there.” They'll usually ask if I'd like a cough drop or a glass of water. Though inside I'm saying, “Yeah right, I could only wish a cough drop would help,” I usually just accept the water to be polite. That sort of comment is completely innocent given the context, given that they know nothing about me, in fact, I wouldn't think anything of it if I DID have a cold. Usually to those people (until I get to know them better) I just respond something along the lines of, "yeah I have a lung thing... I'm usually coughing a lot I wouldn't worry about it." Or if it is someone who I won't ever see again, I use “I'm just getting over a cold” “Its allergies” “The air is dry in here” or whatever else comes to mind.


It is rare, however, that someone is so bold to ask about my cough in a way that doesn't assume I'm sick with something common and/or contagious. The other day, a person I had recently met asked ( & not at all rudely), “Hey what's that cough you got there, Lauren” because (as she explained) she is attuned to coughs since both she and her daughter have bad cases of asthma. Since she was so polite about it, I told her I have a lung condition called cystic fibrosis and though it is for the most part under control, I still have a persistent cough. She apologized for being “nosey” but she didn't have to. I told her I'd prefer if people would just ask. I give her credit for asking instead of assuming.

I never have minded telling anyone about my CF because i've never had a problem with anyone treating me differently because of it. I believe I should be truthful instead of allowing people to assume. That is not to say, however, that when I meet someone new I say, “Hi, I'm Lauren. I have CF.” But if they are so interested to ask, I will gladly tell them and answer any questions they have. If more people did this (about ANYTHING) I think a lot more people would be all the more informed and all the less ignorant. People should ask more questions to learn about other walks of life, other points of view, and other ways of looking at things.

I'll never forget when I asked one of my hall-mates this year how the tattoo she just got was meaningful to her. Her eyes lit up and she said, “Ya know, no one has asked me that yet” and went on to explain how “words, words, words” was a line from shakespeare and how it explains her outlook on life, how so much more could be solved if people just used their words and communicated more effectively. That has stuck with me, and if I hadn't asked, I wouldn't have been able to see the valuable message that she was trying to convey.

There are certain times when your own morals should tell you when asking questions is “nosey” and when asking questions is helpful. If there is something that you are unfamiliar with,you should try your best to learn about it. I'll use the example of someone's religion. If you just met someone who was Islamic and you didn't know anything about their religion, would you ask about it? The people who you ask these questions to are usually un-offended as long you are polite about it. Just put yourself in their shoes, would you be offended if someone asked you about your religion? In fact, a lot of problems in this country would be solved if some uninformed people asked a Muslim about their God and about their beliefs (for example)... they would be surprised how many of the same beliefs they shared. Use good judgement when being a question-asker though. Instead of assuming and saying “You're Muslim, you must not mind suicide bombers,” ask “Could you tell me more about your religion?” or “What kinds of things does the Koran teach or tell?” You may learn that suicide bombers are extremists and hardly represent the majority of the population, or that Muslims have some mighty fine morals.

So ask a vegetarian what made them decide to refrain from meat, ask someone who has lost weight how they did it, ask someone where they got such a cute shirt, ask someone who disagrees with you why they feel that way. I'm not saying to butt into everyone's business whenever possible though. There are certain times when question asking is not appropriate. For example: asking about someone's private personal life or asking questions for the sake of gossip. Questions should be asked in order for knowledge to be attained. And the more we learn from asking questions, the better off we'll all be. So here's to the question-askers, the answer-seekers, the knowledge-absorbers. I know the person who asked me about my cough is a good person because she dared to learn about someone else's situation. I hope that the next time she hears about a Great Strides Walk or even meets someone else with a cough like mine, she remembers how meaningful it was for her to ask.

I encourage you to stop by Lauren's blog today and give her a little shout-out. I want to make sure that she knows her work is very much appreciated!! Thank you SO MUCH for all of your positive contributions to this community cyster!!!

Friday, March 5, 2010

My First Experience with Hemoptysis

**Reposted from August 2009**

I present to you the first edition of First Friday. I believe this idea came from Casey who wrote a blog about his CF "firsts"(click here to view) a couple weeks ago. Here are some examples of other's "firsts" blogs (that sure was a lot of the letter "s" at the end, how far off was I grammatically?) from Piper, CysticGal, Chrissy and Megan (if I missed yours and you'd like to be included, please shoot me an email and I'll add it).

What I've decided to do is highlight ONE of my CF firsts every Friday and try to capture exactly what happened and what I was feeling in that moment. It can be very scary experiencing something for the first time, so hopefully you guys can use this and other CFers' blogs as resources when those times occur.

My first bout with hemoptysis reared it's ugly head at about age 12. I distinctly remember coughing up so much junk that I ran to the toilet to spit it out. Now, for me, that was a big deal. Back then it didn't bother me at all to swallow mucus that I had coughed up from out of my lungs. Today, it's a different story, and I try to spit it out into a tissue (or on my floor). But this particular coughing festival produced much thinner mucus than I was used to and it did taste a little different than normal, plus, it was filling up my mouth. So I ran to the toilet to spit it out. Low and behold, my mucus was red. First I thought, "man what did I eat that made my mucus so red". Remember, I was a kid, a healthy kid, and hemoptysis wasn't even in my vocabulary.

As I leaned over the toilet and continued to cough up that lovely warm red stuff, it hit me, "Wait a second, it looks like blood and now it tastes like blood, hmmmmm, it must be blood!" Here's the deal though, I didn't panic. I don't know why and I still can't fully explain why I don't panic now 17 years later when I'm coughing up CUPS of blood (although I admit, coughing up multiple cups of blood while in CHINA, didn't produce the calmest of emotions). Back then, I remember thinking "this is kind of cool". I don't even think I told my mom or grandma (I was at her house when this happened) about the episode. I'm not a big fan of having people (especially my mom) worry about me. I do however know that people (especially my mom) worry about me already without bringing anything else to the table.

What's strange, is I didn't have another case of hemoptysis until well into high school or maybe even until college. After the age of 20 though it was pretty common for me to have a bout or two in between hospital stays. I would usually cough up around 1-4 tablespoons per bout. In recent history, I've been embolized twice for the hemoptysis, in November 2005 and February 2009. Both procedures were considered a success and I had very little bleeding between the two embolizations. Since February's procedure I have coughed up blood twice, but it was very little and during a run.

So there it is, my first experience with hemoptysis...wanna tell me about yours????

PS- I'm hoping to get no responses because none of you have ever experienced coughing up blood :) I can hope right?

Friday, February 5, 2010

First Ever Blog Buttons for CysticLife!!

These buttons are a work in progress, but I wanted to get them out at the request of many of you who read this blog. You can grab one of these buttons by inserting the code below the image into the HTML/Javascript widget option on blogspot. If you have any issues or have any suggestions for buttons, please let me know. Let's continue to raise awareness together and take this thing to a whole new level! (If you add a button to your blog please let me know so I can check it out! I'm interested to see which one will be most popular :) )

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Thursday, December 31, 2009

Sickboy's 2009 In Review

Here's the best that I can remember 2009....

January
- I came back from China on the 17th and promptly went into the emergency room. I had been coughing up cups of blood at a time for 3 days in a row and couldn't walk more than 50 yards without having to take a break. My incredibly low sats and inability to breath without a bi-pap landed me in the ICU.

February- I celebrated my 29th birthday in the Hole. My PFTs were steadily improving, but not at the rate I was accustom to. At that point I would take just about anything though, since I checked in with an FEV1 in the 20's. This is when the light really started to flicker.

March- I got released from the hospital exactly 50 days from the time I had entered. It was my longest trip ever and one that I will never forget. At my release, I had an FEV1 of 51%. I knew I had to make a change. I started RunSickboyRun.com as a way to hold myself accountable while taking on the task of running one full mile.

April- Within 5 weeks out of the hospital I had gotten my FEV1 up to 61%, not quite where I wanted to be, but definitely moving in the right direction. I had still not run a mile and was wondering if running was really the monster that I wanted to take on.

May- This month was full of fundraisers for the Cystic Fibrosis Foundation. I've been very honored to be invited to speak at many events over the last handful of years and hope to continue to do so.

June- June was a big month with the annual family trip to Rocky Point, a trip to Flagstaff with Mandi and also the celebration of one year together with the love of my life. This was also when I realized that other people were starting to benefit from hearing my story and wanted to know more than just how far I was running. The transformation of RSR begins.

July- This was a big month for my "running career". I was seen by a foot doctor who was able to craft me some specially made orthotics to help with the extreme foot pain I was having while running. I also went back into the Hole for a short two week stay, but this time I entered with an FEV1 of 59%, 8% higher than when I left the Hole in March!

August- New structure for RSR is fully implemented with added features like Spotlight Sunday and Top Ten Tuesday! On a personal note, I started a clinical trial for the TOBI vs AZLI study. I was randomized to TOBI, so now I simply get paid to do my treatments :)

September- This was a turning point month for both me personally and this blog. While visiting Mandi's grammy down in Florida, I ran my first mile!!! In fact, I ran 1.5 miles that day!! As for the blog, it got some national exposure when I was named one of five winners for the Nature Made: Fuel Your Greatness competition.

October- We had another good month in the press when a Tucson newspaper ran a story about Mandi and I and our desire to increase my lung function through running. We were also very fortunate that it was picked up nationally by over 20 print and online publications. The daily unique visitors to RunSickboyRun are really starting to swell. I also had an FEV1 of 68%, my best PFTs since 2005!

November- Let's see, what happened in November, oh, that's right, I got engaged!!!! We also had a busy month with CysticLife as we traveled to Dallas, Texas to serve as a source of education and inspiration at the CF Concert Series. Upon my return, I was hospitalized again and saw my FEV1 drop to 41% within my first two weeks in the Hole. We also hit the over 100,000 hits mark on RunSickboyRun!

December- I got out of the Hole just in time for the holiday's with an FEV1 of 60%. It was a great month full of shopping, family and friends. I also had sinus irrigations done for the first time and my house got robbed while I was in the hospital. It was definitely a different kind of a month, but certainly had WAY more good than bad. I've had trouble getting back into rhythm with my workouts but finally got back in the saddle late in the month. 2010 better watch out!!

I'm so thankful for this past year as it has taught me much about myself and what we as a community can achieve if we put our mind to it. I have met so many wonderful people through this blog that I now call my friends and have been able to form relationships that I hope last a life-time. This has undoubtedly been one of the best years of my life and many of you are to thank for that. Here's the scary part though, it's only going to get better in 2010!!!

Thursday, October 8, 2009

CF Cyster Inspiration!!!

- I'm so thankful for my bloggy cyster Sara! She introduced me to the running plan that I recently completed and is also a huge inspiration for me. We're talking about a girl who ran in and completed a half-marathon within a handful of months of getting her transplant. You want to talk about "no excuses"? This girl is it. We've also been able to hang out socially (of course obeying the vaunted CF six foot rule) with her and her husband Mike and have had a great time together. Thank you Sara for all of the positive influence that you have brought into my life within the short time I have known you.


-I'm so thankful for my new running shoes. I've been able to give them some time to break in and so far, so good. My feet have not hurt AT ALL which is truly unbelievable to me. To go from the pain I was having to literally no pain has been such a huge blessing. It's allowed me to stay on track with my running schedule and has no doubt benefited my lungs. It's actually kind of funny how my shoes came about actually; I'll keep this short, I promise. I went in with Mandi last month or so to get her shoes. While in the store she convinced me to at least let them look at my feet and put me in a shoe (I hate spending money). She then convinced me to buy a shoe with the help of the salesman. I said "ok", but absolutely no Nike shoes (only because I've had a couple runners who I respect tell me to avoid Nike running shoes). I, of course, ended up with a pair of Nike running shoes which I love.
- I'm thankful that my step dad Mark is going to be able to fly back and see his dad for which may be the final time. My grandpa Andrew has lived what many would consider to be a great 90 years plus and has done much of it with a smile on his face. I'm thankful for all of my fond memories of him. Racing him at the age of twelve when he was in his 70's (and he won). Getting in a snowball fight with him in front of his house (he probably won that too). Sitting next to him and my grandma on the front porch of our house when they were out to visit from Iowa. Thanks for all of the great memories grandpa!

Thursday, August 27, 2009

Health Care Reform, Doctors...and my Truck?

I have so many things to be thankful for this Thursday. Here are a few:

- I'm so thankful for a place to have open dialogue. I've been able to put up a couple different perspectives on the current Health Care debate and I've been so happy with the dialogue that has followed. This issue will obviously effect a CFer and their family more than it would the average joe and it's been nice to hear different opinions. We're also fortunate that some readers of this blog are from other countries and have also been able to relate to us their experience in care of Cystic Fibrosis. If you'd like to have your written blog featured here on RSR please send it to me, and as long as it is a positive contribution to the discussion, I will post it. My email can be accessed through my profile.

So which side do you pull the toilet paper from? I think we can come to a sensible conclusion to this before we start with Health Care...gotta start with baby steps.

- I'm very very thankful for my CF doctors. This past Monday was such a telling example to me that my docs just really want to do what's best for me. When I reported my symptoms and my decline in PFT numbers, Dr. Grad didn't hesitate in offering up a hospital stay. Why am I thankful for the offer? Cause I know that some CF doctors feel pressure by insurance companies for their patients to avoid the hospital because of the cost and sadly, they give in to that pressure. My doctors however fully stand behind decisions I make when it comes to my health and trust me when I say I need to come in or if I can fight the battle outside of the hospital. (Just a quick side note: my January hospital stay cost 350,000+ dollars)
It's pretty crazy when you actually SEE how much money is spent to keep me alive and healthy. When I say "I feel like a million bucks", I really mean it!

- I'm so thankful for my truck. Sounds kind of weird to say, but it makes sense when I tell you that I was with out it for 3 days due to a dead battery. When I went to start it a couple Saturdays ago, it responded with absolutely nothing. It was deader than a doorknob as they say. Upon returning from the lake, I tried (and failed) to jump start my truck. I also tried to remove the battery myself and bring it down to Checkers and get a new one. Because I didn't have the proper tools (or skills) to do this, my truck sat there for a few days and collected dust. As I was "working on it" one night, my neighbor offered a helping hand and actually got it jump started. I drove directly to Honda where they replaced my battery with a new one. She's been running like a gazelle ever since and it's nice to have her back.
My truck is white like this one but sure doesn't look as fancy. I'm pretty sure this is a new one. I just thought the picture looked pretty sweet.

Sunday, August 23, 2009

Lovin Lane is "CF Made"

When you have Cystic Fibrosis, it just seems like you're cut from a different cloth. I feel that I often view things a little differently. It seems like I really don't sweat the small stuff. To be honest, I think I'm a little "tougher" than most of those around me. What I call "the talents of a CFer", Marcy (a CF momma and author behind Lovin Lane) calls "CF made". I'm sure that many of my fibros and cystas out there can relate to the following blog....


So I have learned that my son is CF made, which is what I refer to as durable...lol... whether diving into a pool, or taking a baseball or two or three to the face, he seems to have a high pain tolerance... Something I have come to realize God has issued CF children a little more of... So his CF made body and his love for life sends him up my fence.... Will I ever get a break from the ER I wonder?? Yes today I was spared, Thank you Jesus, for my heart can take only so many... I am wondering if all the over the top number of crazy things that happen to him, is to some how out weigh the CF.... hmmmm Food for Thought.... And yes I have survived boys (we have two in high school) but this one is going to do me in... This one is dangerously invincible... Or as I say CF Made...





So what do you think? Are you "CF made"?
I know I am.

Friday, July 31, 2009

New Structure for RunSickboyRun

So I've been working through some possible changes for this blog with Mandi and this is the best that we have come up with. I've asked the you guys what you want out of this blog and most of you answered for me to be "more personal" and to share my "life experiences" with Cystic Fibrosis (as well as for Mandi to post more often :)). Well, I've listened and I think this new blog structure can accomplish that as well as hold me accountable in attaining my goals. So here it is, please let me know what you think and if you have other suggestions:

Mandi/Mom Monday- You've asked and I've listened. Mandi has agreed to post at least once a week on various topics including, but not limited to, relationship issues with a CFer, motivation for a CFer, workout/running tips, as well as anything else that comes to her awesome mind. I'm working on my mom to join in on the fun as well and post some blogs on her perspective of being a CF mom to an 80's baby. If your reading this mom, WE NEED YOU! I'd appreciate you guys leaving some encouraging comments for my mom and your need for multiple perspectives, especially from a mother who has "been there, done that".

Top Ten Tuesday- Here I will list my top ten of pretty much anything, CF related and not CF related. This will give you a chance to get to know me on more of a personal level. It could also e a fun thing for other bloggers out there to try!

Workout Wednesday- Every Wednesday I will update you guys on how my workouts are going as well as keep you informed on stats like my weight and total mileage for the week. This will still hold me accountable for trying to push myself to actually become a runner.

Thankful Thursday- Sometimes I think we can all get a little lost on how much there is to be thankful for. Here I will tell you what I am so thankful for in my life and why.

First Friday- This blog theme was started by some other fibro/cysta bloggers out there and I don't see why I can't make it a weekly thing. Instead of running down a list, I will take a single "first" in my life (could be CF related or not) and try to capture how I was feeling at that moment in time.

Sound-off Saturday- This day could turn out to be one of the more interesting days on this blog. We all have different views/experiences when it comes to life and how we see the world. I'd like to find two people with different views and have them express those on this blog. It could be anything from healthcare reform to lung transplant vs. no lung transplant to hospital stay vs. no hospital stay to how Mandi and I "saw" our date night. It will have the feel of a "he said, she said" forum. I'm looking forward to it.

Spotlight Sunday- Every Sunday I will highlight the Cystic Fibrosis blog that either touched me the most or just one that I feel people need to read. We have a lot of great bloggers in the CF community and I want to make sure that you guys know about them.

So that's what I'm thinking as of now. What do you guys think? Any suggestions? Are you guys still interested in this blog if I make those changes? Like I've said before, this blog is for you guys and I want you to love it as much as I do. So let the suggestions/comments/questions begin...give it to me. I'm ready!

Monday, July 27, 2009

Readers, I Need Your Help!!! Please Watch Video!

I need your help guys. As my hospital stay comes to an end, I need to know where to go from here. This blog started as a way to hold me accountable while I whip myself back into shape and get my lungs moving again. It has turned into a blog more themed around Cystic Fibrosis and my personal feelings about the disease (which is what was requested of me by the readers about a month ago or so). I need your help again and I'm asking for your input on how to make this blog better. I would also like to make this blog more consistent according to what day it is...something like Mandi Monday and Workout Wednesday or something (just a thought). So let me have it guys, I want this blog to be yours!

Friday, July 10, 2009

Calling All RunSickboyRun Readers!!!! I Need Your Opinions!

I'm always looking for ways to improve upon this blog and I am asking for your suggestions. What does this blog need that it doesn't have? What does it have that it doesn't need? Does my writing style stink? Am I addressing topics you even care about? Would you like to see other features or information on this blog?

I started this blog as a resource for the CF community and to also make CF personal (hopefully) to those not personally affected by Cystic Fibrosis. It is also good place to track my progress and hold myself accountable, but that is not the main reason for this blog. So I am asking for your help to make this blog better. And in case you're worried about hurting my feelings or "stepping on toes", please don't be, I'm asking for you to be brutally honest. If you don't want your suggestions or comments seen publicly just email me at coachsharpe@cox.net

Thank you all so much and I look forward to your responses!

Ronnie