Blogger Challenge

There are a few blogs that I follow on a regular basis. Especially being post-tx, I have less time to focus on them as I have had in the past, but since I've taken this summer off from school, I've had plenty of extra time to catch up on my online community that helped me get through so much in the past few years. One of them is Piper and she is now post-tx herself and is very active in the CF community. Her blog gave a challenge to her readers, which I found interesting...


1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

So here it goes...






I've mentioned in other posts that compliance is something that I feel is held over the heads of those of us with chronic diseases. Especially before transplant, I felt that it was a threat from people who held the power over us for recommendations for transplant. If we don't do our treatments as told, if we don't take our pills exactly, if we don't exercise like we should... basically, if we're human for a day and forget something we run the risk of not getting recommending for transplant, should the need arise. It's a lot of pressure to place on a person their entire life!

At the same time, compliance is not the only piece to the health care puzzle. I had one doctor who would constantly remind me that I needed to exercise more to maintain my lung function. That it would help me build muscle which would help me maintain my weight. Weight and lung function go hand in hand, so it would seem like if I could keep my weight, I would keep my lung function. (What a mouthful of twisted thinking...) All of that being said, any time I had a decrease in lung function, especially after a few weeks of IVs, the doctor would simply shrug her shoulders and tell me it was just the nature of the disease to gradually decline over the years. So in a way, she was playing both sides of the issue... You need to work harder, but if you fail, it's not your fault. It was very confusing to me. I was constantly told that it was my fault for failing lung function while in the same breath being told that it wasn't my fault, it's the disease's fault. Confused yet, because I am! That's what I feel this poor young lady is being told (from Piper's blog)

Here's what I came up with to help my own sanity:


CF is a crazy bitch.


I believe what my doctor was trying to tell me was that with regular exercise, treatments, medication, etc. we can control how quickly we decline. In some cases, people have been able to reverse the downward trend, but that isn't the case for everyone. To help not get so discouraged many fall back on the mantra "It's the nature of the disease - it's progressive and not my fault." While I feel that this is OK to get you through the rough patches, I don't feel that it is what patients should hold on to. I personally feel like this is accepting your decline and in my case, my fight declined.

Waiting for transplant, I continued to deteriorate on a regular basis. It was what was expected of me and at times, I almost felt it was encouraged to get me a higher LAS score. Get me closer to transplant. While I wanted to live to make it to transplant, I had a hard time finding the fight to continue pushing myself to try and get "better". It was a weird backwards world for me, not fighting and not feeling like I had control over myself, where we almost celebrated the decline. What was even more strange to me was that when I woke up after my surgery, it was like a switch had been flipped and I expected everything to be going up instead of down. I was willing to work again and push myself to get "better". Basically, the point I'm trying to find here is that I think our attitude to which trend we should be following (for me) is in the hands of our doctors. If they expect us to get better, we expect it to. If we fail in any way, many of us take it far too personal. Lately though, I have found that going home and looking at where I started and see where I am today (regardless of the results of the last test) I am still better off... I have still gained ground. It makes me feel a little bit better about how things are going.

Maybe, for those starting the transplant process, or those who are in the middle of it, need to realize that even though you are declining you have to keep fighting. That's what proves to the transplant center that you deserve a transplant. As long as you are trying, you are winning. I know... corny... but that's what they look for. And for all those CFers wondering if they are going to be a candidate for transplant, most centers that that you are a CFer into consideration. You can take millions of pills a day. That's a key to surviving post-transplant. You know that exercise is a key to life. That will only help speed up your recovery.

So after feeling like I've just rambled on and on... I hope that someone got something out of this. Best wishes to all of my Fibros and Cysters and I hope that everyone keeps fighting, regardless of what your current status you are at. <3