Please Don't Forget Us

I think people often forget about the sick teenagers. We aren't adults yet but we aren't little kids either. We can understand what the doctors are doing to us and why and sadly what comes with that is having the knowledge to know that sometimes we are going to have to feel worse before we can feel better. We are sick at a time of our life when we feel invincible. We think nothing can ever stop us in this world and then boom life picks you out of no where; you are stuck in a position when you don't have a choice. Life isn't in your control anymore. As teenagers we want to have that control and when we don't get that it makes it hard to cope.

Teenagers are able to understand what is happening even if we don't get it fully. We don't have the experience adults have. Which can make things confusing and complicated at times. Again that gets all these emotions mixed up in our head and we become frustrated and angry. Even adults know it is hard keeping our emotions in check. Being sick and dealing with all those added emotions on top of trying to manage that normal teenager aspect of life is quite the ordeal. We are at that age where we are gaining more independence than we ever have before. Being able to go out with friends without your parents, driving, some heading off to college, and building a life for themselves. Just imagine being fourteen or even eighteen and suddenly having everything stripped from you. All your independence. What if you needed someone to help you get up to go to the bathroom, to walk, to shower, to help give you your needed medications, to take you to your doctors appointments, and to have someone be there at the hospital with your during your stays almost 24/7? I think that is pretty difficult for a grown adult to even grasp much less teenagers.

Our friends can't really relate to us anymore because they don't understand. They don't know what it's like to be sick and not having the energy to get out of bed in the morning. We want to go to school but we just can't. Missing out on social events and just the daily aspects of life for hospital stays, treatments, and doctor appointments makes us feel isolated. We don't want to loose our friends because we have often been withdrawn from that social setting. Life goes on with or without you and sadly when you are sick life often has to go on without you when you are busy sick in the hospital not being able to do anything. You have that isolated feeling like no one understands you. There's not anyone to relate to and you certainly aren't a normal teenager anymore. It is hard enough being a teenager and having to figure out what you want to make of yourself and grow up to be. Adding on a chronic illness makes that ten times harder. Sometimes I feel like life honestly hates me some days. I can never win with this war and just because how I want something to turn out doesn't always mean it is going to turn out that way. 98% of the time life never goes my way. If life went my way then I wouldn't be sick. I wouldn't have all these diseases that people can't pronounce or have never heard of in their life. I wouldn't have all these tubes sticking out of my body and I can certainly tell you I would not be taking all these pills that I am taking now. I would be healthy, I'd be back playing soccer, attending school everyday and finishing school on time.

Adults are supposed to get sick as they get older. We aren't supposed to be sick. We should be the healthy high school star athletes but we can't. Some of us have grown up being sick and in the hospital but to others it's a whole new world. At such a young age the younger kids don't know what's happening. They are almost left in the dark about many things that are happening because they don't know why they are getting sick from medicine or if their treatment plan is even working. But us teenagers we know. We can experience the bad news first hand. We see our parents cry but yet we understand that pain too. We cry too because we know something bad and scary is happening. We've already been exposed to life as it is and we know what is supposed to happen and what isn't.

Most importantly we are not little kids so don't treat us like that. We are not five and we are very capable of understanding and aware of what is going on in our bodies. We are just like any other young adult except we have these extra challenges in front of us. Our disease does not inhibit our ability to comprehend what you are saying. For most of us our brain is the exact same before our diagnosis a year or two ago as it is now.

All I am asking is please don't forget us. Treat us like any other teen would be treated however understand that we may not be able to do everything our peers do, and sometimes it might be hard for us to express how we feel when so many emotions just overwhelm us it is hard for us to share with you exactly how we feel because most days we don't even know. We are not adults and we are certainly not children. Our life varies much different from them in how you need to treat us and the disease. It's certainly a crazy journey and it is not an easy one either. All I ask is that you treat us like any normal teenager, and are able to help us along the way but also give us some space. That's the only thing we truly want.

Thankfulness

I am thankful. With Thanksgiving approaching many are counting their blessings and sharing what they are thankful for. Most are the general generic I'm thankful for my health, family, friends, place to live, and the list goes on and on. But you know for me those generic things don't come so easily. 

What I'm thankful for is probably much different than the average person...I know being sick probably would mean that I have absolutely nothing to be thankful for because I mean what person who has a life-threatening, rare disease had anything to be thankful for? Well your wrong. I guess people look at people who are sick as if it's some extreme burden and nothing good ever comes out of it. I would say you are wrong. Being sick has taught me how to love life and value every moment because you never know what may happen the next. That's something I think healthy people miss out on. You don't realize what value life really has until it's almost taken from you. Sick people sadly have gone through those situations and I think it makes them some of the most selfless and amazing people. Yes healthy people are pretty awesome too. But these people understand that life is absolutely beautiful and you just have to take a look around and you'll see some breathtaking moments. You learn to love everything. The good the bad and the ugly in life. I am thankful.

Being sick has made me thankful for family. Family who will always stick by your side even when the going gets tough. The ones who fight for you and fight with you. They cherish the little things and celebrate those successes but they also cry with you during those times that aren't so pretty or happy. Having a mom who will take care of you 24.7 giving you medications when you are too sick. Spending late nights at the hospital, or waking up so early to head out the door for yet another procedure, and the worst of all sleeping in the world's most uncomfortable hospital pull out bed. I am thankful.

Thankful for the friends who send their love and prayers. Friends who won't shy away because I am sick. And those who are wanting to understand what I go through. The friends who make meals, care for my siblings, who come visit me in the hospital, the ones who send me simple texts of encouragement, and those who just want me to know they care.  My prayer warriors who make me feel special and important like someone cares about me. I am thankful.

I'm thankful for my life. Being here today is a miracle. I'm thankful for doctors, surgeons, nurses, feeding tubes, central lines, and TPN(IV nutrition). These are the things that keep me alive! Without them I wouldn't have anything to be thankful for. I am thankful. 

So yes in a round-a-bout way I am thankful for being sick. But when you think about it no I am not thankful for being sick. I am thankful for what being sick has given me. Being sick has given me a chance to love life, realize the value of every moment, to know how important friends and family can be, and just what it means to live without a care in the world. I am thankful for life itself, for living, breathing, and dreaming! I am thankful.

Choices...

Do you remember that Robert Frost poem that talks about choosing the right path? I'm not going to post specifics but I am sure you know what I am talking about! I've had to read that poem more times than I can count in school! As many of you know I have been stuck in the hospital for a week now.

Last Thursday I had an IV Iron infusion like I have had many times before with no complications! Mom dropped me off at school a few hours later and I felt fairly decent but that went downhill in about five minutes. I suddenly felt really nauseous and dizzy. I didn't think it was much so I went on to class but I got really sick. My heart was racing, I felt like I would pass out, I couldn't walk straight, and I had a massive migraine. My vitals were crazy! O2 was way too low, heart rate was way too high, and then my blood pressure was sky high. After getting meds and laying down my blood pressure was better but all other vitals were bad and my pain just wasn't going away. Mom came and got me the Hematologist/Oncologist who was on-call said to give me IV Benadryl and if that doesn't help to call back in 30 minutes to an hour. Everyone figured I was just having some delayed allergic reaction...Which would be weird because I have gotten countless iron infusions since I started them in March and have never ever had an issue. I never did get better. We checked vitals again and my O2 was low but better, heart rate was still quite high, but now my blood pressure had just tanked! We were directed to the ER to attempt to control my vitals and get this pain under control. I was admitted for pain control and to get my vitals stable in addition to another issue my port-a-cath.

Over the weekend we got my vitals figured out and back to normal. My pain has still yet to be controlled even with IV Morphine although I will admit I feel much better than I originally did when I walked through those Emergency Room doors last Thursday. The surgeon met with us on Friday about my port and let's just say he was not the most understanding at all. He did say we should probably take my port out and place a Hickman due to the issues but he wouldn't be able to fit me on the schedule for the weekend and since I would be stuck there it could probably be done on Monday. Although he did try and force me to use my port by saying "Even I have to do things I don't want to do that are good for me." I was absolutely angry and just shutdown. Eating your vegetables is good for you but it doesn't cause you any harm! Using my port may be good to get proper nutrition BUT it does cause harm as while infusing my arm goes numb and starts tingling and it's just very painful. My port hurts and is tender in general even when I am not accessed. We have had trouble accessing so there is an obvious issue that needs to be taken care of.

On Sunday the residents and the floor docs showed up and told me I was having a picc line placed tomorrow so we could give my port a rest. WHAT? We agreed we were removing my port and now they are making this decision without my involvement? It's my body you just can't do whatever you please with it! What made me really upset was the surgery team never came to talk to us about the decision and I had to find out from the residents. I asked for surgery and their explanation on Sunday afternoon was that they think my port issues can be fixed just by resting the port so we need a picc line so you can get TPN. They refuse to take the port out because I will loose access on my chest to place central lines and those never come back. It's a once in a lifetime deal! There is no set number that anyone has but once you reach that limit you are out of luck big time! Which I have only had two central lines and a picc line in the past year. The surgeon still refused to give us any other option and said I either had to do it his way or no way at all. Sadly I was forced to get a picc line which I absolutely did not want to do but I had no choice. My port is broken and I can't get full nutrition any other way.

Monday afternoon I was rolled down to radiology to get this picc line placed. I was not happy. I had a picc line placed a year ago so I figured it would be just like last time! No major issues and I didn't need any medicine. I knew who would be doing the placement and it was someone I could trust. Turns out I was wrong...My Mom had to leave so she couldn't be there for me and I knew no one in Interventional Radiology who would be placing the line. I was extremely anxious and scared. Thankfully my nurse from the floor came down to check on me to make sure I was alright and I wasn't. She stayed with me the entire procedure holding my hand. I did need versed this time! The radiologist tried to place a line six or seven times before he could successfully place it only by dilating my veins. I can't even begin to tell you how painful that is! You never ever want to have to be awake for that. It was horrendous. My picc line was also placed in the bend of my elbow so they don't want me bending my arm. That isn't going to happen! How many people do you know go all day without being their arm. You bend your arm for everything! It's extremely painful and uncomfortable. I have so many giant bruises on my arm and they hurt bad. Homecoming is on Saturday and I really didn't need to be decorated in black and blue. The procedure overall was awful! I got back and took all the medicine I could and then slept for a few hours.

So now that I had to go through the trauma of getting my picc line placed we know I can NOT use my left arm anymore to place a PICC line. The radiologist damaged my arm a lot trying to place that one line it wasn't even worth it! Now since it looks like we are going to be taking my port out and placing a Hickman hopefully I just lost two access spots right there not including my left arm and who knows how many we could have gotten in there. So their overall purpose was defeated anyway! I now supposedly have a surgery appointment on Monday with my usual surgeon to hope he will straighten things out. I can not have this picc line in for much longer. Infection risk is very high with PICC lines which is another reason we wanted to avoid this situation.

Probably the hardest part of this hospital stay was shattering my Iphone screen on my IV pole on Tuesday night. My phone charger got tangled up in my tubes and as soon as I got out of bed to go to the bathroom my phone came with smashing into the corner of the IV pole and completely shattered. Thankfully it still works but it's not the prettiest thing in the world. I have had a phone for four years now and I have never ever broken a phone once until Tuesday night happened. My Mom said we will get it fixed but it just irritates me that I had to be so stupid and let that happen. This has just not been my week at all!

Tomorrow I am asking to go home because they are not able to further help me and if anything they have made things worse. I am done dealing with doctors who refuse to help me and include me in conversations and decisions that involve what happens to me and my body. I may not have a medical degree but I am fully aware of what happens to my body and how it makes me feel. I sadly have to go home with this picc line in my arm and the port still in my chest. Pain isn't entirely managed either but I guess everyone is just hoping for the best. This has been the absolute worst hospital stay I have had in the history of hospital stays and as you know I have had a lot! This week has been challenging both physically and emotionally so thank you for all those who have stuck with me listening to my rants, visiting me and keeping me company, or just being there for distraction because it has helped. Keep my spirits up and going. Also an awesome thing is Wednesday I was apart of a video project for the child life here at the hospital! It's a video for the donors to thank them for helping fund this hospital to make it work like it does! I got to tell them what child life means to me and just some of the experiences I've had with them since I have been sick and in the hospital. My favorite is last year when I had my first picc line placement my nurse was dancing to White and Nerdy because I had never heard it before so child life pulled it up on the Ipad we were using for music therapy distraction. It was quite humorous to say the least! I have had so many awesome experiences with child life and they've been able to be there when I need them to talk about what's going on an find a reasonable solution to my problems.

Anyway I am thrilled for Homecoming on Saturday even though I won't get to go to the Mito Walk and I am ready to bust out of this lousy hospital! Also IVIG starts next Friday! Hopefully this will help me stay healthy and make my immune system function for once! For those who don't know  I was diagnosed with Common Variable Immunodeficiency(CVID) back in September which we have suspected for a while but never got a confirmed diagnosis and now we do! I promise I will share Homecoming pictures!

While all these choices that have been put in front of me I have come to realize none of them are good options but I still sadly have to choose one and sometimes I don't get a choice like I would have hoped for. What choice I choose depends on what is right for me and I hope that it will come to show in the coming weeks. Fear and anxiety definitely play a part in my decision which is why I am very reluctant to physically make a choice but I hope it's for the best!

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!!!!