Saturday, March 13, 2010

Another Great Positivity Blog

This is a blog by a fellow cyster, Lauren. It's actually in response to an amazing blog written by Piper just a few days ago. I highly encourage you guys to read through the start of this post and continue to read it by clicking over to Lauren's blog.

A CFer who I is listed for transplant and who I respect and admire so much, Piper, recently posted a blog which you can read HERE . She discusses positivity and questions how CFers, at different stages of the disease, can understand it. She got me thinking about how all CFers as well as non-cfers can universally understand each other's take on being positive. Before I begin my discussion I want to make a Disclaimer that this blog is in no way meant to offend anyone but rather to bring together the CF community in discussion.

First let me make a couple points:
1. CF is a confusing disease in the sense that it affects everyone differently. There are many factors contributing to this difference including environmental factors, upbringing, bacteria, access to healthcare and technology, age, biology, genetics (both with the CF gene and others), compliance, lifestyle, and just plain luck. Some people with CF may appear perfectly healthy, some run marathons, some have never been in the hospital, some have received transplants and are living healthy lifestyles, some live on oxygen every day, some spend half of their year or more in the hospital, some are preparing for transplants, and unfortunately still some don't make it past the age of 16, or 20, or 30 (and we pray for the families and lives of those people every day). The fact is, it affects everyone differently and although there are some people who are non-compliant, there are also people who try their best to be healthy and still end up sick.

2. It has been my own personal experience that if I do everything I am supposed to as far as compliance and exercise, that I am one of the "lucky" ones. But this is taking into account that I go to clinic and have been admitted to a world renown hospital in Boston, I was diagnosed very young (although not at birth), I have been lucky enough to always have good insurance that enables me to have the best treatments possible, I live a lifestyle that is not detrimental to my health (i.e. I have not yet begun to work full time), and I am young. I have had medicines like pulmozyme and tobi for the majority of my life, I have had access to the vest since I was 7. Yet, before I started to be religious about doing my treatments and exercising, I was in the hospital two or more times a year for 2 or 3 weeks at a time (and not just for routine things, I've had severe hymoptisis, i've been on oxygen, been to the ICU, been so sick I could barely talk, etc.) I also had my fair share of skipping treatments (sometimes for a week at a time) of cheating (dumping out my nebs, shortening my vest, not taking my pills) of not exercising, of being lazy. And I saw, as a direct result of that, a lot more time spent feeling sick and being in the hospital.

3. Although it is difficult to compare someone with CF who is virtually symptomless and someone who is getting new lungs, there should still be respect for the lives that we all live. There is still a baseline of numerous amounts of treatments and therapies that all CFers must do to keep themselves healthy. The disease is still progressive and just because someone may be healthy now, it doesn't mean their disease might not take a turn for the worst at any moment. (And vice versa, it doesn't always mean that just because someone is unhealthy now they can't get better)

I think that as a CF community we all need to respect the fact that our disease affects each of us differently, sometimes we don't have control over it, but that doesn't mean that we should ever stop trying to make ourselves better, like Piper said "here's to trying." We can still be inspired by each other's fights even when one of us is sicker than the other if we respect and understand how differently CF can affect some people. I stress compliance and exercise a lot in my blog because ...

To read the rest of Lauren's great blog, please click here.