Last night while doing my nebulizer treatments I was thinking about how long it has been since my last IV (intravenous) treatment and how long it has been since my last in-patient hospitalization. I am proud to say that its been a year and a half (November 2009) since my last IV treatment and about 2.5 years (November 2008) since my last hospitalization. Astonishing!
Growing up I spent lots of time in the hospital, usually 2x a year for up to 14 days each visit. Needless to say I grew very accustom to the hospital. I had "hospital" bedding, slippers, pillows, pj's, etc that would go with me to help make the stay more comfortable. This is how you can identify someone who has spent too much time at the hospital, their hospital room looks like their room at home!
By the end of the treatments I was trying to figure out why my health has either gotten better or stabilized or was it a figment of my imagination? My conclusion is complicated but the gist of it is that I have began to understand and appreciate doing my medications.
I have been apart of so much medical advancement and have been lucky enough to be on the receiving end of the advancements. I think that one of the biggest things I have been able to do is mold my life and lifestyle around CF. While this may appear that I am letting CF control me, I am in fact doing the exact opposite. In order to have freedom from a disease you have to treat it. I have to be able to do all my medications and be able to take time out (sick days, rest days, etc) in order to enjoy my life and in order to be a productive employee. The older I get the more I really understand and appreciate this concept. It used to be that I would put off the treatments in order to go play, go to a movie, watch tv, or whatever. But the truth is that I would feel sick, short of breath, have headache's, have low or high blood sugars that would leave me feeling depleted. When I started to reverse my priorities and take care of myself I could then really engage in whatever activity I was doing. There is a word in the medical field for all this, compliance.
Compliance is always brought up in CF Clinic. Are you being compliant with all the medications and treatments. This word compliance, is like a hammer-to-the-head, for those with a chronic illness. Seriously, I hated having to answer this question in clinic. Because, no matter how much I strive for perfection I will never be able to be 100% compliant 100% of the time. I am human, not God. I am riddled with errors. As I have found a balance, I can honestly talk about compliance in a more realistic way. I am compliant to the best of my ability and I am always looking/seeking for new ways to be more compliant. For example, doing my Vest is an area of difficulty for me because I hate sitting still for 20 minutes with literally nothing to do.
The Vest, for those of you who don't know, vibrates the chest area to help the patient cough up the mucus. The vibration is really strong, so much so that I can't read during the treatment, can't hear the TV over the machine, can't really do anything that requires hand-eye coordination. I put a commitment on Facebook about this dilemma and got lots of great ideas, like books on tape or podcast. PERFECT! Now I have solved the biggest hurdle in my compliance issue with my Vest treatments.
So, do I think my CF has gotten better, no. Has it stabilized, maybe in some ways. Do I think I have found a happy healthy balance, absolutely. I made
a promise awhile ago to doing all my medications and I intend on keeping that promise but I also want to build upon that. I want to do them with a happy heart knowing that its my gateway to a smoother path rather than with dread. If you, as my readers think of fun ways to do things like The Vest or nebulizer or feeding tube treatments please let me know. We can all learn together and we can all make improvements together.
~Doodlin'
