I have a ton of different things on my mind and I don’t know that I can wait to make them in different posts…haha I’ll see what I can accomplish in this one without confusing you, hopefully that is.
A few weeks ago I came across a post on Facebook about what it is like to have a family member with CF. It was a blog post from the family members point of view. It can be read HERE. It was never truer and I of course added my 2 cents to my repost of the blog post. People say “I’m sorry” when I say I have Cystic Fibrosis and that’s why I cough all the time when they ask if I “have what’s going around” or if it is “allergies.” I was diagnosed at 5 months old therefore CF is all I know. I don’t know what life without CF, or even life before diagnosis, is like. You don’t “get” CF, you are born with it. Well I guess you do “get” it when the sperm meets the egg. Haha No, I don’t blame my parents or hate them for it. It’s my life and I love my life. I like to think I broke the mold because they didn’t have anymore kids after me. Ok well that’s half-true. After my diagnosis dad went to “snip and clip” and the baby making factory went out of business. CF is my “normal.” No, I don’t mind when you complain about having bronchitis and coughing your head off. If it’s not your normal then of course it sucks and yes you do have a slight glimpse into what CF is like on the coughing aspect of it. I have a great ab workout, it’s called coughing. Yes, I know I’m skinny. No, there is nothing I can do about it. Gaining weight for someone who has a rebellious body like mine is as hard as it is for others to lose it. I burn a crapton of calories breathing and coughing everyday. That is just a few of the many I could add to the article.
With that said brings up my next topic floating in my head. There are things that only the people who love the person with CF will understand. I have always had a hard time with being “ok” with loving people and letting them get close because I will just hurt them when I die. By that I mean, that they will love me and care for me and I will end up dying and leaving them alone with a void or a hole in their heart. It’s kind of like I want to save them hurt by not letting them get close because it won’t hurt as much when I die. I’m not being morbid at all. I’m speaking reality in my world. I know that I would have to never leave my house and not speak to anyone if I didn’t want anyone to care for me. haha Well I have mostly gotten over that way of thinking but every now and then I think about the hurt and loss my family and friends will feel and that hurts me. Yet another reason I am too stubborn to give up. I will fight until my last breath. I am very thankful for my friends that have chosen to love me and be on this journey with me. I know I can’t stop the hurt because let’s face it, I’m an amazing person. Who wouldn’t miss me when I’m gone? haha
Next topic floating around my mind is about comparing one persons CF to another. No ones CF presents in the same way. Some may be similar but CF doesn’t follow the textbooks nor does it follow what you think it’s going to do. To say that 2 people with the same lung function can and should be able to do the same things is silly. There are many other factors that come into play with CF like pancreatic issues to include diabetes or sinuses or arthritis or many other things. I’m not a bad person because I can’t do what you can and you have the same lung function or even if you have lower lung function. If you walk around saying how your life sucks and there is no point or how you are jealous of someone else then you will be miserable. You have to find your happy. You have to be ok with who you are. You are not any less of a person because someone else can run a marathon and you can’t even walk up the stairs without getting out of breath. Everyone is different. If everyone was the same that would make for a very boring life. I think that covers the random things floating in my head, for now at least.
Today I sent the dreaded “white flag” email to my nurse. I haven’t felt the greatest for about a month or so. I was hoping it would be better after that time of the month as you know my period messes with me every flipping time. In 3 weeks we are heading to visit some friends in FL that we were stationed with at our last base so I NEED to be good to go by then. I now have an appointment tomorrow afternoon to see what we decide as a treatment. I’m assuming it will be IVs which I’m ok with, I just want to feel better. IVs are never fun but the outcome is worth it. I’m also not a fan of major night sweats, annoying coughing throughout the night, coughing up nasty stuff (more nasty than my normal nasty), being short of breath from walking across the parking lot into my husband office, oh yeah then up the stairs while carrying lunch mind you and being so tired and worn out. I will update after my appointment.
Oh yeah one more thing about the new CF drug Orkambi. It is the drug I was on the study for when we first moved to TN 2 years ago. I did finish the 6 month study but stopped the drug a week after I started the roll over portion. I didn’t feel that the pros out weighted the cons. I wasn’t feeling insanely better and I would have random stomach pains and shortness of breath. Now that it is approved with the dosage figured out I am going to give it another try. It is sitting on my counter waiting for me to start. The reason I haven’t started it is because I haven’t felt decent enough and I know the side effects that I will have when I first start taking it and they are not fun. The drug is designed to make the CFTR fold correctly which it doesn’t do right now in my body. It’s basically making the chloride channels work right. With that said, that means that my body will be in a bit of shock while it is trying to figure out what is going on. I will start the Orkambi when I am feeling better. There is no guarantee that it will help me. It has helped many others which is great. If it helps even 1 it is worth it. NOW I think that is all for now…hahaha.
Until next time…