I got CF, but I also got this life…

Last weekend I (sort of) participated in the annual CF Climb for a Cure, and then a couple days later, my uncle shared a post that a man with CF wrote, sharing his experiences about having cf and what he has learned from it. So now, it’s my turn to share.
First of all, CF is serious. It is life long, life threatening, hard to live with, and overall sucky. That being said, I am not a china doll either. I have found that a lot of people take either side upon hearing I have a chronic illness. Some become over-concerned and cautious about me. Most though, do not understand the severity and complexity of the disease. Just because I do not always look super sick does not mean I am not. Because I am. Generally, I am constantly fighting off coughing, or my lungs ache, or I am just generally tired. A lot of days there is even more then that; I’m hungry and can’t get full, or can’t find food that looks appetizing or i am not hungry but know I need to eat. 
This brings me to my next point. Food and weight gain is such a sore subject for me. If you have talked to me about it, you are probably very aware of this. I can’t gain weight worth a damn. I try so hard and fail daily. I can eat enough to feed 3 people or eat what a bird eats and there is very little difference to my weight. I do my freaking best to eat a lot every single day. And I constantly eat. When people make fun or point out the amount I eat, I cringe. It makes me self conscious, even though I know I need it, and I know it doesnt show. When I am eating more than my husband, it’s weird. but please dont point it out. On the flip side, dont tell me to eat more. I do eat. Sometimes I am simply taking a break, or it might be an off day for me. Just let me be the judge of my food intake. I hate when people complain about how they look, especially if they look healthy. I don’t care if you dont look toned, you look healthy. Whenever you talk about needing to eat certain foods to keep from gaining fat and to keep healthy I just bite my lips. I know everyone has different body types and need to take care of themselves I get it. But it’s still sore for me. I also really hate it when people joke about me taking their fat. Just no. Shut up. 

I don’t like to complain about my sickness or what I go through daily. I really truly hate it. I dont want people feeling sorry for me, and I dont want to start a spiral of feeling sorry for myself. So when people who have a cold or a cough whine about it constantly, I want to give them a BD. make them really feel like coughing. Again, I know that everyone is different, and especially if you dont deal with sickness daily, when you do, it sucks. I really do get it. but come on, at least watch who you are complaining to…

Along the thread of not feeling sorry for myself, I dont like to use my disease to my advantage, but if I have, to I will. For example, I need to take sick days and days for doctor appointments. I dont feel bad about that. I had my own room all 3 years I lived on campus, with a bathroom, so that I was able to do treatments and experience some of the unpleasant parts of CF in private. again, I dont feel bad about it. I needed that stuff. However, I see people who have illness using it to their advantage. For example, getting out of class just because. Why did you even go to class then? waste. I know what I need to do to take care of myself, and I do it. 

That brings me to my next point. I know what I need to do to take care of myself. I really dont need people telling me to take my meds, or do a treatment, or blah blah blah. I know. I do this. Sometimes though, I do complain about it, because it is very time consuming. and annoying to have to remember all day, every day. I do a much better job taking care of myself since leaving high school. Truly, I do 3 treatments a day, unless I am exhausted and nap through it by accident, or am busy doing something else. I take my meds, twice a day, sometimes three. I check my blood sugars. I do insulin. I change my pump. I do nebs. I keep track of when I last ate, what I last ate. I do this, every day. But sometimes I forget. either I did it the day before and think it was actually done that day, or I just plain ole forget. I am a human, I can make errors. Yes, sometimes reminders help me, and I am very grateful for my husband who does check in with my, both gently reminding me, and reprimanding me if needed (although, that bothers me). 

I have been told that I need a lung transplant. This was told to me in Nov. of 2010, and I have not had one. I have the work-up done, so if I ever get to the point that I am really sick, I can get put on the list. However, I am not sure I want one. It’s a big procedure, with a lot of what-if’s. It also will change my life. Yes, parts will be changed for the better. But other parts will be tougher. For example, no more treatments- yay!. but I have to take immune suppressants every day for the rest of my life, I have to make sure all food is cooked to a certain temp (even when going out to eat, which will be much more rare, and fast food will be out), left overs are gone after 24 hours. and that’s just a few things. Its a very big decision, and one I am not taking lightly. JC and I talk about it all the time, and go back and forth about it. If you are going to try to give me input, please take all aspects into consideration. I cannot count the amount of times people say “oh but of course you’ll do it. why wouldnt you?” or something similar. To many, a transplant is a cure, but I know better. 

And now this has turned into a great big complainer blog and I am sorry for that. However, it expresses my feelings about my CF and gives a little more insight into living with it. I want to end with this: My life has not been horrible. I have had a really great life. I was blessed with an amazing, supportive, strong, loving family who are by side through it all. I gained a great second family when I married my best friend and the love of my life. I have terrific friends who stand by me.  I have overcome many obstacles, and have grown stronger each time. I have a great relationship with God. I know that life is never what you expect it to be, and you gotta be flexible. I got CF, but i also got this life.