Home IVs- Night #1

Hello all! I think I'm doing well keeping up with the blog while I have all this "spare time"! Tonight was my first night home on IVs in right about 2 1/2 years. Learning curve! Luckily it did all come back pretty easily. The only curve ball is that one IV that has to be hung from a bag on an IV pole. Honestly, I feel like a nurse having to set up an IV bag, but it's not really bad. I was nervous doing it the first time, just since it was new, but my home-health nurse wrote out step-by-step on how to do it and my sister-in-law, who learned it with me this afternoon, was walking through it with me. We had no problems and I feel confident now in doing it tomorrow morning. Luckily though, it's not my 5:30 dose!!

I'm doing treatment now, so late, because I spend most of my IV time in the den being social. I'm ok with staying up late to do treatment and getting up early to do IVs/treatment. I figure if I need to, I can grab a nap during one of my 2 breaks. But I did notice something: my motivation to take care of myself was reignited 10-fold during my hospital stay. I was reminded how WORTH IT it is to take care of myself every day so I don't have to go back to the hospital any time soon. It flew by, honestly, and I didn't suffer *too* much, so it wasn't a horrible experience. However, I wanted nothing more than to redeem myself, go home, and take care of myself. And it's a good thing I'm rejuvenated with this because right now, my medicines consume almost the entirety of my time awake during the day. From 5:30am-11pm (plus treatment if I do it after the IVs like I'm doing tonight). But my dear friends, hear me loud and clear...: IT IS 100% WORTH IT. I want to have my health and have my life and if I have to devote some time and pain and discomfort and frustration to GET more years added to my life, then so be it. I was blessed and cursed with this disease and I have to take the bad with the good, suck it up, and handle it with a smile. One of the best parts of my hospital stay was the many times I got to tell a nurse/doctor/RT/anyone how I haven't been in a hospital in over 2 years. Their reaction was motivational to me. I want it so much more than that. I want to boast about 5 years or 10 years. It sounds crazy, but I believe it's doable. But only if I don't get down about myself again.

****If you are reading this, and you hear me complain or read about me being down about having to take care of myself, please take this last post and rub it in my face until I remember what these 2 weeks felt like. Thanks!****

I'm also upping my Vest time from once a day for 15min to twice a day for 30min. I really don't like the Vest, so I'm proud of myself for this change. It will take some dedication and a little push from those closest to me, but I know I can stay with it. IT'S WORTH IT IN THE LONG RUN.

While in the hospital, BORED, I stumbled upon a website that sends an email to your future self. I don't remember when mine will be delivered, maybe Nov of 2013, but I told myself how much I hated being stuck in the hospital and how I needed to do everything possible to stay out. Maybe I'll get that email at just the right time in my life...

Allergy update: so we're really still not sure what's causing this, but Sarah and I think it might be a combination somehow of the betadine and one of my medicines. We think this because the rash is almost completely only where the betadine was put on my arm, but it only flares/itches when I have IVs flowing. It's so weird. Either way, I have this prescription topical cream that did wonders for the itching this evening.

I think that's all for tonight. I know I still have yet to get pictures up, but I will soon. Just hang tight!

Thanks for reading, as always.
-Andrea

Thanksgiving Post

Dear friends, family, readers, subscribers, and passer-bys,

I hope every one of you had a fantastic Thanksgiving, if you chose to celebrate it. Not all of my viewers are from the United States, but I still hope they had a happy Nov. 25 yesterday. However, those in the US most likely celebrated Thanksgiving, a holiday to celebrate the pilgrims eating with the Indians so long ago. They had so much to be thankful for then. In my opinion, we have even more to be thankful for now.

When Thanksgiving was approaching, I was thinking about what I wanted this post to say. I thought about a list of things I'm thankful for, but the list seemed to never end. I thought about just writing about my day with my family, but that just didn't fit either. Since I've been home, I'm already read 2 books and I'm halfway through my 3rd. I love reading, but I really only have time for it on breaks from school. Each book has taught me something to be thankful for, so that's what I decided to write my post on.

First book I read was "Love, StarGirl" which is the sequel to a book I love, "StarGirl." In short, StarGirl is a very unique girl who just "graduated high school" even though she's home-schooled. Her family moved to Pennsylvania where she connects with them in ways most people can't connect with people. From this book, I learned to be thankful for our strengths, weaknesses, and the beauty of nature.

The second book I re-read was "Number the Stars" which is a short, kids book focused on two families during the German invasion of Denmark during WWII. One family is Jewish and the other is not. The story tells of how the non-Jewish family protects the Jewish family and how they escape to Sweden. From this, I learned to be thankful for good friends, family, and my freedom.

And lastly, the book I am I re-reading right now is "My Sister's Keeper" (which was butchered in the movie; just read the book, it's phenomenal). It's harder to sum up this book, but it's about a family where one daughter has cancer and the other daughter was born to be a perfect transplant match for her. Now, the second daughter, at 13, has filed for medical emancipation from her parents right when her cancer-stricken sister needs her kidneys. From this book, I learned to be thankful for my health.

1. No, I'm not learning to be thankful for my health because I'm reading a book about a girl with cancer. It's not the "oh, she's worse off" mentality. Not at all. I already knew I wanted to post about being thankful for your health, and this book just said it too.

2. What did I mean "be thankful for my health"?!? I have CF! No, I didn't forget. Trust me, I'm doing treatment as I type this. I didn't forget. But I am very thankful for my health. Read on.

My health has it's ups and downs, along with every other person in this world. My ups and downs might just give you whiplash though. I am not only thankful for the good of my health, but the bad. Yes, you read right. I'm thankful for CF.

I think I just committed a CF-sin saying I'm thankful for it. But it's true. Without a shadow of a doubt, I know that I would not be the same person I am now if I didn't have CF. I also wouldn't know so many of the amazing people I know now, my friends through CF. I wouldn't have this blog! More importantly, my health has made me available to help others, through being an inspiration to some and source of strength for others. I don't think I would appreciate the little things in life as much as I do with CF. I don't think I could love people like I do now without CF. I just don't think I would be the person I've become without CF.

So thank you, cystic fibrosis. Thank you for helping me to become the strong, loving person I am today. Thank you, with all sincerity.

I am thankful for so many things beyond those that I listed here, but there's no way I can list them all. But know that you are on my list of things I'm thankful for. :]

-Andrea

5 more days....

I'm so ready to move back to college I can't even explain! 5 more days...

Oh, today I got a my hair cut and coloured!! It looks so good! I wish I had a picture on my computer, but the best one is on my mom's phone, but I'll post it soon. Nothing drastic, just subtle highlights and long bangs and layers. I'm *really* happy with it. Picture soon, I promise.

Also, I ordered a CF awareness bracelet from Fatboy and I LOVE it. He and his wife shipped it soon after I ordered it and it came when they predicted it would! That's better than most companies online! Follow the link and I encourage everyone to buy one! 25% goes to the CFF, so it's for a good cause too! I was anxious about buying one for fear of being labelled (this time with a bracelet) of being THAT KID with CF. That sick kid. After mulling over it for a few days I decided to throw my fears to the wind and order it. I feel so much more proud of myself now that I wear it than before. I'm not afraid to talk about it either. I talk with confidence knowing I am stomping CF into the ground with every breath I take. I'm winning and there's nothing it can do about it but fight back. Luckily, I'm a much better fighter.

Anyway, I reiterate that everyone should order a bracelet!

For some reason I've been having weird stomach issues. Not my usual stomach issues, but new issues. That's never good, but nothing too seriously worry about yet. Just not feeling fantastic in a new way. It comes and goes but when it wants to, it will take me out of life completely for a little while, mentally at least. It's all I can think about when it happens, it's so bad sometimes. Hopefully it won't come back.

Ok, I'm tired. Another day before I move back has passed. :]

-Annie

And the countdown begins....

From Monday, the count is: 9 days until college life. Wowza. That's.... soon.

So I started that running routine and, except for this weekend out of town, it has worked well. I get up ~7:10, do treatment, and try to be out of the door sometime soon after 7:30. I have been taking two laps around my neighborhood running the pace of [3 minutes running, 1 minute casual walking, 1 minute brisk-power walking, repeat]. There is a small hill in my neighborhood. It's small enough that it doesn't intimidate, but steep enough you FEEL it.... oh man. And I start getting weary near the end of lap 2. But I have to keep going. I keep encouraging myself. I keep reminding myself that CF doesn't quit, doesn't take a day off. CF wants nothing more than to win me over, and I take pride in making my goal to stand in the way of some[thing] else's goal. So I run in the way of CF's goal and I keep running. If that makes sense. It's like half symbolism and half real. Haha!

In an upcoming post, assuming nothing drastic happens before then, I plan to kinda give a brief overview on my life: the part with CF, the part without, my family, my sport, my meds, everything. Just lay it all out there so there is no confusion at all about my situation.

One last thing. Hey, CF, you're not going to win this. Are you listening? I am stronger and more determined than you can ever be. You've made me this way, and for this I thank you. However, I don't need you. Please, just try and stop me from living my life. You already have and so far it hasn't worked. Even with a PICC I played physical soccer for a very important game. I push through even when others think I should quit, because of you. I'm going on to be great and you will be nothing but backgruond noise. I'm not afraid of you. Try me. I don't back down from fights, and this is no exception. The more you bother, frustrate, hurt, and try to take over me, the harder I fight back. So c'mon. Bring it. Because I'll bring it right back, 10 fold. You. Will. NOT. Win.

-Andrea