All was well..for a little bit. It started to get REALLY hot..up in the 100's actually and the weather wasn't mixing so well with my lungs. I pretty much have stayed inside as much as possible where all of the air conditioners and fans are running. It was causing my lungs to feel tight and worthless which then was causing me to breathe heavier and with more effort which started making me cough a lot more which was taking up a lot of energy which thheenn started causing my weight to drop and with all of that my energy level started to go down way low. I was sleeping basically through-out the whole day, only getting up for treatments or to eat. So yeah, it's all a big gigantic circle of CRAP!
The weather is supposed to start getting better this week..around the 80's, so hopefully I'll start feeling better. Actually, I almost already do. I'm not as exhausted, but my weight still needs to come up (104 right now) and I'm still short of breath and coughing more. Oooh yeah, I also had some fevers last week...goodness gracious.
Speaking of last week, my mom had the WHOLE week off. No daycarreee kids all week. Although, I do have to admit, I did start missing them after a couple of days ;). I mean, they're practically family.
We had the whole downstairs carpets professionally shampooed and since we weren't allowed to be anywhere except the kitchen, we went and stayed at a hotel about 25 minutes away. Me and my younger brother got dropped off and everyone else went back to the house to paint the whole front porch. I stayed back because I needed to do treatments and my mom didn't want me around the hot sun or the paint andddd Ethan (little brother) stayed with me for company. It was very relaxing. They didn't come back until around 9-10 and they still weren't finished so all day it was just me and my little brother.
I went to my first counseling appointment for the first time in 5 weeks, which might not seem like that long, but trust me, it was. I felt sooooo much better after leaving...always do :).
I deactivated my Facebook account because I have just felt very frustrated by a lot of people. Right now, I just want to focus on who and what is important to me.
Uhmm hmm..let's see..what else...I dyed the ends of my hair with kool-aid, yes..I said kool-aid. I guess it was the "cool" thing to do in the 80's, says my mom. I just felt the need to do something different with myself. I actually ended up doing it three times..The first time the color turned out just how I wanted, actually even better, but I put all of my hair to one side and dipped it in the kool-aid, so only some of the other side of my hair got dyed. I then tried to do it a different way to see which one I liked better and added some purple, but it didn't even turn out. I then finally fixed the other side with the same color I originally started out with. It looks green in the pictures that I took, but it was actually a bright blue/tealish color.
I got a LOOONNGG, very harsh, comment on my new video, "I live to inspire" talking about how I'm a narcissist and how I make a fool of what CF is. Apparently I make it seem a lot worse than what it actually is and that I'm a child who should just stop. Oooh, and apparently my so called "inspiring" videos and pictures aren't inspiring at all and make people want to vomit and cringe. It hit me hard at first, but then I realized that this person doesn't know why I do the things I do. I never make my videos or upload pictures thinking to myself, "let's see how many people will like this" and I most certainly have never done any of it to "inflate my already high ego." I have always done all of it to help people, not just CFers, be inspired and give them strength in times of need. It's who I am and it's what I do. I won't become weak or stop what I'm doing because one person isn't inspired by it...everyone has haters, right?
4th of July; Didn't really do much. We didn't exactly have very many choices since I couldn't be outside. My whole family piled in the car and we went to buy a bunch of fireworks and lit them off when it started to cool down and got dark enough. I sat in front of a fan outside while all of them lit them off. I think this was the first year that it was legal to light fireworks off in my state.
Me and Ilene started a new thing where we send pictures to each other everyday. We should of started doing it a long time ago! Hannah had an appointment last week and her PFTs dropped from 78% to 67% and her weight went down 7 lbs. She got put on oral antibiotics and is actually going back today to see if she has improved (fingers crossed). We have been talking everyday now and I feel as if we've gotten closer..more than just "cysters." Best friends. We're so alike in every way that it's crazy, and it's not just because of our CF. She sent me a package a little while ago and it actually almost brought tears to my eyes. It had a bracelet (loovee bracelets) that I put on instantly and haven't taken off yet, a little change purse, and a CD..the CD...wow. The front has a picture of me and a picture of her and we're both holding up our "CF sucks..." bracelets and it's called "24 Things to Remember." There are 24 songs on the CD and each one has a meaning. She didn't put the name of the song, but instead, she put the reason as to why it's on the CD. For example, some of the names are.."Don't fear what you can't control," "I'm walking this road right beside you," the last one is perfect..."24. We all have our problems, our monsters, our deadly thorns. Cystic Fibrosis is ours, so let's do this." Ahhhh!!! I can honestly say that the CD is one of my most prized possessions. Unfortunately, I tried putting it in everything, car, three different computers, CD player, and it wouldn't play, but she is sending me another copy. I really wish she knew how much it means to me. Our birthdays are the same day and I have a pretty good idea in mind for her ;)
I can't seem to upload the other pictures, so I'll probably work on uploading some later, or I'll just upload them with the next post.
Well, thank you to everyone who managed to stay with me during this long, probably boring, post.
Till next time..