My CF Buddy

It has  been a year since my sister, Anna, died from CF. In this past year, I tried to put on a neutral face as people asked if I was okay. I didn't quite understand the question; I knew they were asking because I have CF and her death might have affected me more/in a different way than other people. I shrugged it off and said I was fine; I said I was sad like everyone else. And for a while, that was true. I didn't think of how Anna's death might have impacted me personally, but as the months dragged on, I realized not having my CF buddy to always go to impacted me more than I thought.

I need Anna. I didn't realize that until it was too late. You never know what you have until it's gone, huh?
I hate that, but it's so true. We take everything for granted and all of a sudden, it's gone...
After Anna's death, I played it off cool. Of course I cried, I mourned, and I missed her. I still do. But after a month, I created this blog, and I don't think it's a coincidence that I did after her passing.
With Anna being gone, I needed to get out my thoughts some other way. So I created this blog to explain my disease and give people an inside view to My life with CF. The thing is, I created this blog to get out my thoughts before I even realized I needed to get out my thoughts. I started doing my own little therapy without knowing it.
Anna was there for me whenever I needed to complain, vent, or rant about CF, and she always provided her valuable insight and experience. She could easily empathize which made her so easy to talk to for me. But now I don't have her, and I regret not talking to her about CF more. There have been so many things, as seen in this blog and even not mentioned here, that I've wanted to tell her about, ask questions about, or just talk about. I've had scary moments, exciting ones, and some that we could have shared.

After Anna died, I went out to the CF community. Again, this was very subconscious; obviously I knew I was doing it but I didn't know why. I thought I just wanted to be involved with more people who are like me. The truth is, however, that I was looking for a replacement. I needed someone else to talk to with CF. Turning to Facebook, I was faced with two options: various CF Facebook groups, and someone whom I met through a CF social media type of thing, who also lives in Minnesota.
Both worked for a little bit. The Facebook groups provided me with countless people to talk to for anything. However, after a while, I noticed most of the groups seemed to make me depressed, as people would post things about their low lung functions, their fellow CF-ers who died, and about their depression and life. I understand and respect that we all have bad days, and people with CF do suffer from depression and low lung functions, but I was surrounding myself with the negativity and depression which only made the grieving process worse.

I turned to my friend, whom I will keep unnamed here. I still occasionally talk to her, but not as extensively. While we did have great talks about CF, we couldn't totally empathize with each other; we have different situations, as she (overall) is healthier than I am and we're same age, so she had less experience than Anna. Again, nothing bad about talking to her, only that I couldn't replace her with Anna.

That's when I realized that nothing and no one can. Anna was such an amazing inspiration that still to this day encourages me and keeps me going. I've learned so much from her, CF-wise and life-wise. I've learned not to take things so seriously, and to laugh at everything, especially yourself. And most of all, I've learned to see the beauty in the world.

This past year has been crazy to say the least. There has been so much that's happened to me CF-wise that I so wish Anna would be here to see. I remember the day after I got out of the hospital last May (2014), I went to visit her for the first time in the ICU, and I told her I would probably be getting a port. She was unable to visibly show her reaction, and although she tried to talk, it was hard to make out what she said. I explained that the docs had trouble placing my last PICC and it would likely be the last one I had.
I really wanted Anna to be there for me when I got my port. She talked about it a few times, and even though she never had one, I felt like she would've been able to empathize with me and maybe even answer questions. And maybe we could have even reversed roles and I could have told her what it's like to have a port. I could have comforted her and explained what it'll feel like.

I also got hospitalized twice this school year, which is rather a rare occurrence for me. (Usually once a school year is normal). Having Anna to talk to about hospitalizations was always nice. We'd talk about the nurses, or some specific doctors who shall not be named, and sometimes she'd even visit. While these hospitalizations without Anna didn't have a drastic affect on me, it just felt different, and I missed her comfort.
This past April when I was in the hospital, I had prom, which was also highlighted in my most recent blog. I know she would have liked seeing that; Anna was always very opinionated about the caretakers, including doctors, nurses, and the social worker/dietician. I'm sure she would have been there to help and maybe even plan, and I know that she would have definitely appreciated this particular set of caregivers.

Another big thing that happened was me getting my pump, which is a different story for a different blog which I probably won't write. In short, I got a pump for my diabetes.
Anna had a pump, and I had a TON of questions about it. My pump is different from what she had, but the questions overall were pretty generic. I have a friend who has diabetes, so I could go to her for some things, but again, it just wasn't the same. I appreciated the help, but I needed my sister. My CF buddy.

Lately, the CF world has had extraordinary breakthroughs. Everyday, we are getting closer to finding a cure. A new medicine was introduced this past year to help target the underlying causes of CF and slow down any infections and whatnot. In July, the FDA will hopefully approve of it and hopefully it will be sent out for us to use. It's bittersweet; of course it's a good thing for CF patients with our particular mutation, but it's sad to think how close we were; how close Anna was to staying alive for even longer.

The Climb for a Cure team this year was the biggest one I've been a part of ever, and granted it was in honor of Anna, the Climb had always been an "us" thing. We'd always do it together, and fortunately we got to do it one last time before she entered the hospital in 2014. I loved doing the Climb in honor of Anna, but it was definitely different. It was our thing, and without her, just like many, many things, it simply wasn't the same.
Last year at the Climb, I remember we sat at the top of the stairs waiting for our group to come. She was on her iPad, and she kept making weird, random noises and "cacaw-ing" to see if they were close. We wandered around the top of the IDS together and we spotted a picture of me catching and later one of her and JC, her husband, on their wedding day. We both were very excited to see our lives being snap-shotted and shown off to the CF world.

The 2014 Climb for a Cure team

Anna and I also connected movie-wise. Two big movies come to mind when I think of Anna: Jurassic Park and The Master of Disguise. Both brought us together, but the latter definitely connected us. We could hold a real conversation using only Dana Carvey quotes, whether it be over text or in person. One time, she just randomly texted me with a quote from The Master of Disguise and I, without even questioning it, replied with another one. After a few quotes, I asked if she was watching it and then she replied with "No, I just thought of it. We're actually on our way over right now." That kind of explained our relationship: random, weird, but we went with the flow. We played off of each other and it was awesome. I've yet to watch The Master of Disguise since her death. I'm afraid I'll just be tempted to reach for my phone to text her. Maybe one day I'll be able to bring myself to do it.

I miss Anna a lot. Way more than I thought I would. For the first few months, I was in denial. I knew I missed her but I didn't know that it was because she was my CF buddy, I thought I missed her because she was my sister., But Anna was way more than that. Anna was a friend, a listener, a shoulder, a child-at-heart, and most of all, Anna was, and still is, an inspiration.

Vest (best) buddies