Red Band Society

Like many in the chronic illness community, I was interest in the upcoming series and watched in during their 100 hour free web promotion a few weeks ago and I was not impressed. Most of the community is disgusted that the producers would make a show about teenager living in the the hospital. This definitely makes the hospital seem more glamorous as it is. The hospital rooms are gigantic and so modernized. That does not happen in a real hospital. Yes there are exceptions to that statement, however that's just not true. Another note where are the IV poles that follow you around 24.7 connected to your body running into your veins. The one and only medical device is a heart monitor. You never ever get one ounce of freedom in the hospital someone is always following and watching you whether it's your parents, nurse, techs, doctors, and child life. Socialization is kept to a bare minimum in the hospitals due to HIPPA laws but these teenagers are allowed to walk into a patients room and do whatever they want. Why do these kids do drugs, smoke, drink, and other illegal substances knowing they are already sick and they are putting themselves at an even great risk by letting poison run through their body. People already stereotype chronically ill teenagers and now this is making things worse. They look at us like we are drug addicts because well some chronically ill teens on tv was doing it so it much be like that for everyone. How does one get enough energy to go running in the halls when they are very sick? I am pretty sure most children who are inpatient on the pediatric ward including myself feel so sick they can't do anything because their bodies are just so beat up! The one boy who has Cystic Fibrosis a genetic lung/digestive condition is never out of breath lots of energy and no oxygen and where is the picc line or portacath for IVs taken two weeks at a time. I have several friends on the transplant list who need organs now and they are on oxygen 24.7. They are just so sick which is rare that this boy is able to do anything while waiting for new lungs. I highly doubt anyone will ever be willing to change it but it is just weird for those of us in the chronic illness community. There is a WashingtonPost about the show and one statements from it was how we seem to have a theme every year for what types of TV shows we watch and 2014 seems to the be the year of sick and dying teenagers with shows including The Fault in Our Stars, If I Stay, Red Band Society and others. While I can look past some of these flaws in the television series by Fox I can't watch them use inaccuracies that hurt us based on society's predetermined judgement of chronically ill teens.

351 Days...

TPN WE ARE NEVER GETTING BACK TOGETHER

I remember when we first got together
Saying, "this is it, I have no choice," cause like
We've seen each other for 351 days
When I said I needed space (What?)
Then I come around and say
Baby I hate you" that's never gonna change, trust me.
Remember how that lasted forever in a day?
I say, "I hate you," we break up, you call me "I still hate you."

Ooh we called it off again last night
But ooh, this time I'm telling you

We are never ever ever getting back together,
We are never ever ever getting back together,
You go talk to your friends, talk to my friends, talk to me
But we are never ever ever ever getting back together

Like, ever...

I'm really gonna miss you saving my life

And me yelling at you screaming that I'm done

And I hope I never need you in my life and you find your peace of mind
With some IV pole that's much cooler than mine.

Ooh, you tried to hook me up again tonight
But ooh, this time I'm telling you, I'm telling you

We are never, ever, ever, ever getting back together
We are never, ever, ever, ever getting back together
You go talk to your friends, talk to my friends, talk to me
But we are never ever ever ever getting back together

Ooh, yeah, ooh yeah, ooh yeah
Ooh, yeah, ooh yeah, ooh yeah
Ooh, yeah, ooh yeah, ooh yeah
Oh oh oh

I used to think that we were forever ever
And I used to say, "Never say never..."

Ugh...so you call me up and you're like "you still need me"

And I'm like..."I just...I mean this is exhausting, you know like,

We are never getting back together. Like, ever.

NO!

We are never ever ever getting back together
We are never ever ever getting back together
You go talk to your friends, talk to my friends, talk to me
But we are never ever ever ever getting back together

We, ooh, getting back together, ohhh,
We, ooh, getting back together

You go talk to your friends, talk to my friends, talk to me (talk to me)
But we are never ever ever ever getting back together

351 Days...That's 351 days too many. 11 months 17 days. 50 weeks. As you many of you know I have been able to run tube feeds since I was able to get my jtube placed which has made a huge impact for me! It was a very hard surgery and I had lots of pain issues thankfully a week later I finally started feeling better. I've had many hard days. Days were I didn't think I could carry on anymore! Days where it was so hard to get out of bed just because the pain was so bad. I remember the day I had to make the decision to start TPN. At that point I had been in the hospital for weeks. I never ever imagined I would be stuck on TPN. I didn't want it. My brother was on it. A central line meant no swimming, showering with tape covering my body, infection risk, sterilization, and a bunch more I did not want to deal with. I had no choice but to choose TPN. The GJ had failed and I could not live in the hospital. I cried and I cried and cried. No one wanted to pick that choice ever. But I didn't have a choice. It was a live or die thing. I think me knowing what TPN was and knowing the risks and actually experiencing it first hand with my brother made things harder on me. I didn't just hear the stories. I have seen the stories. But TPN has saved my life for 351 days. 8 months ago they told me I would probably never ever get off TPN. Even if I could get off TPN they say it won't be long term but I am here to prove them wrong. Today I am proud to say I am OFF TPN. Today I get to stop TPN. All those nights connected for 12 or 14 hours a night whatever they had my TPN run over. I don't need it. I am doing tube feeds into my jtube. The separate jtube has benefits of passing farther into the digestive tract which was only a plus side we would hope to work with the J-tube. It did it work! I didn't even imagine that happening when I got my j-tube placed. 24.7 feeds at a rate of 55ccs an hour. This is not high enough to be off TPN but my GI is okay with it because I have weight to loose since I have gained from the double calories and I am increasing at least 5ccs a day. So TPN we are never getting back together! Also side note if you weren't there for me when I was sick or you only want to be there for me when I'm healthy then please get out of my life. I want someone who is gonna be there for me through everything not someone who is only there when I'm healthy or too sick! I am so excited to be starting this new adventure TPN FREE!!!!