Monday, December 22, 2014

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 We don't want to loose our friends because we have often been withdrawn from that social setting.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.

Friday, November 21, 2014

Thankfulness

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.

Thursday, October 16, 2014

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!

Thursday, September 18, 2014

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.

Monday, September 8, 2014

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!!!!

Tuesday, August 26, 2014

Imagine...Memoir Poem

Imagine...
A life filled with
hospitals,
doctors,
needles,
and pain.

Imagine...
being told you have this disease.
What if that disease had no treatment?
No surgery, no magic pill, no chance of remission,
and there is no cure.

Life would never be the same
That perfect happy life I once had
no longer exists.
It's like my life was sucked into a tornado
then spit back out again
and shattered into a million and one pieces.

Imagine...
what it feels like
to run on nothing.
Your energy level hits rock bottom.
It's like two double A batteries trying to run a car
Doesn't work well...does it?

Imagine...
watching your body fail
your organs dying one by one
but your mind is still alive.

I don't have to imagine.
This life...
Is my reality.

Monday, August 18, 2014

First Day of School(Junior Year)

Only I would be the coolest kid on the planet to have to leave class to go to the surgeon's office on the first day of school. I swear everyone in my class thought I was insane for having early dismissal. The new building is up and running! There is a lot of walking involved! For anyone who knows I go to this gigantic high school! It's a lot bigger than your average high school! The new building has three floors and walking has proved to be a challenge today. I will be going full time this year which is exhausting on my body. In the past couple months I have had leg pain that has not improved and extra walking makes it hurt worse. My joints in my knees, my bones, and just in general my legs hurt! It isn't like the muscle pain from which I experienced with IV Keppra but it is different.

I become exhausted very easy as many know I often don't have the energy to keep up with my friends daily. Three flights of stairs is hard! Last week I was given the option to use the elevator except I am stubborn and I just did not want to do that! Well today I really should have. I only went half a day and I am just dead! My back hurts, my joints hurt, my knees hurt, my bones hurt, and well my entire body hurts! I haven't struggled with physical limitations much until this pass year. As my health declined so has my energy level. I used to be sleeping constantly! Now I thankfully am able to sleep less and function more but my energy is not doing well either. Yes I still push myself and try and function but it is hard at times. I want to keep going and do what I can because I don't want to let my body just go to waste I want to keep the muscles I have working! So tomorrow I probably will try the elevator because my body just isn't liking me so much!

My surgeon wasn't pleased with how my incision is healing and personally I wasn't either! He ended up cutting me again so this time I will hopefully heal properly. We go back in two weeks for him to check me out again(along with Tyler) At that point we should hopefully schedule my PEJ change so I can get a button! I was supposed to originally get a button but they didn't have my size in stock at the time of surgery. I was NOT happy when I woke up. He didn't want to place the tube while I was awake over in just the clinic and he wants it done at the main hospital in the OR so it looks like we will possibly be having a surgery planned eventually! It won't be anything major just a tube swap!

PS: I am doing feeds!! They are running anywhere between 20-25ccs an hour for 20ish hours a day sometimes less but no less than 16 hours a day! It's progress! So happy to be able to run feeds and I hope I am able to stay running them and even get up to a faster rate eventually!
First Day of Junior Year

Wednesday, August 6, 2014

Gastroparesis Awareness Month

August is Gastroparesis Awareness Month! Gastroparesis is a form of Digestive Tract Paralysis(DTP). Gastroparesis literally means paralyzed stomach. It is a rare, and debilitating disease that causes the food you eat to sit in your stomach for hours in some cases even days. This causes nausea, pain, fullness, acid reflux, no appetite, and indigestion.
  • Some interesting facts about Gastroparesis.
  • Your Chances of getting Digestive Tract Paralysis are 1 in 25 but your chances of getting identity theft are only 1 in 200.
  • Gastroparesis has few treatment options with no cure.
  • 5 million Americans suffer from Gastroparesis.
  •  Gastroparesis symptoms often imitate other GI disorders making diagnosis difficult.
  • Tests used to diagnose Gastroparesis are: Gastric Emptying Scan, Endoscopy, Gastric Manometry, and Barium X-ray.
With Gastroparesis your body is literally starving itself. No matter how much you eat it all just sits there and doesn't move until you either vomit it up or your body decides to slowly move it out of there. The food doesn't digest so it can't break down the nutrition we need to live. Digestive Tract Paralysis feels like you have the stomach flu 24.7. It just does not go away! Those who have DTP battle nausea, vomiting, dehydration, weight loss, fatigue, malnutrition, and more.

This month I hope you educate those about Gastroparesis/Digestive Tract Paralysis. You never know how close to home it might hit! You can always say it won't happen to you but it could! Help us find a cure for this horrible disease so I can get my life back! Most of us survive of feeding tubes and iv nutrition to live. It isn't fair that this disease has taken the one simple thing from our lives...eating.


Tuesday, August 5, 2014

Growing Up Too Fast

Have you ever imagined what it's like to be sick as a teenager or even child? What if you had to grow up with doctors, hospitals, needles, and more? Let's just say life is different than the average. We probably spend more time in the hospital than we do at school or with friends. While we are young most kids learn the basics like how to read, learn their abcs, or tying our shoes. While sick kids learn how to pronunciate their rare disease correctly(which most adults can't even pronounce), learn the names of their medications, and what their doctors name is not what their classmate's name is! It just doesn't seem fair to me.

Kids who are sick grow up too fast. Suddenly we aren't worried about the little things we are worried fighting to survive. Most kids have dreams of growing up to be a fire fighter, police officer, or a princess but most of these kids you see in the hospital may not even have the chance to grow up and be something. Sadly that's the cruel reality. 30% of children with rare and genetic diseases will not live to their fifth birthday. These kids grow up as fighters and it makes them stronger than you could ever imagine. They have this willpower to survive and beat the odds. I think it's the most beautiful thing in the world.

Life is just different when you are sick. Not necessarily in a bad way but just in a weird sense of way. We don't always experience normal childhood events and could probably rattle off more medical information than you may know. We aren't normal. At least like I know in my sense I feel more mature and exposed than my classmates at school. I am just always around adults. I don't spend all my time at school. I spend my time at the hospital more often than not. Nurses and doctors become your real friends. They are obviously quite older than me. So now I've just naturally stuck with that.

It gets weird with those who are my age. They ask me something about my disease and I probably go off on this long medical education unit in which they have no clue what it means. I try and keep it simple but it's still over their heads a little. And their understanding on why I can't do something sucks! No I can not eat food or drink anything. Well could you have ginger ale (or insert other eating product here)? Of course I can't! And how about we talk about dating....I can't eat food. What is the number one thing people do for dates? Oh yeah dinner dates! You know were you eat food and have a conversation around the dinner table. While both complimenting on how amazing it is. Yeah I kinda have this thing where I can't eat food so...that's out of the question. Chronic illnesses brings it's challenges when it comes to growing up! We are just mentally older than them. I don't think it's necessarily a bad thing. In the end it only makes us stronger but it also sucks. Yeah it sucks a lot! You just don't feel the same as everyone and sadly a part of you just feels left out from everything that was supposed to happen. But you learn to live with it and move on because you realize this chronic illness is just gonna be there forever and you just have to make the best of it.

Monday, July 28, 2014

Fear

It's been a while since I have last posted almost two weeks actually. I just haven't had much to say. Things are moving right along here in our house. We have been trying to keep ourselves busy as summer is winding down to a close. So far our activities this summer have included the waterpark, bowling, movie watching, bike-riding, coloring, dancing in the rain, Carowinds, arts and crafts, preforming surgery on stuffed animals, and a few other things here and there. We went to SkyZone last week right after Tyler's appointment with our psychologist in the GI clinic! We saw some pretty cool friends in the waiting room who were also waiting for appointments and we all got to talk and hang out for quite some time. We even invited one of them to come to SkyZone with us where we had a blast!

We did have some issues with the employs who kept telling Tyler he was unable to jump with his backpack. Of course this made Tyler very upset as they were being quite rude about it. We even said he was connected to it showed him his tubes and was like there is psychically no way he can take it off! He does everything with his backpack even goes swimming! It has never stopped him before! Why should it now? The owners came over to talk to Mom and everything was sorted out but Tyler was crying his eyes out at this point and he was so upset that he couldn't jump. He was just completely unconsolable! It took us an extra 30 minutes to calm him down and he was in a bad mood the rest of the day. Although he did get to go jump with his backpack on it made him upset. We talked about it once we got home and he was angry but seemed better about the situation.
On this day we also tried the Strawberry Neocate Jr. formula. Which is a brand new flavor they unleashed. I have to admit it is much better than the other formula I have had to drink in the past  but it still sucks and I really don't want to drink it again! My Mom also made ice cream out of the formula and while Tyler loves it I think it is the worst thing ever! At first it was great but then comes that after taste which just made me want to puke! If you are able to drink Strawberry rather than the other flavors I do recommend! My least favorite flavor is Eo28 Splash Grape/Raisin that one was horrible! While the best flavor before strawberry came around was Vanilla.

My health has been great lately! I am gaining quite a bit of weight which isn't good at all because it is too much! We will be decreasing my calories in hopes it stops it and maybe I will be able to loose some of this extra weight which I have now gained. We worked some things out with my allergy appointment last week and we are trying to get me in to a new group of doctors so I hopefully can get what I need to help fix all these problems we are having!

Otherwise we are just waiting till surgery. Which brings on the actually topic of this post fear. Yes I am scared to get this surgery done. No I am not afraid of the surgery itself. That part is easy for me. I have had to have way too many surgeries already in the past year I am used to that part but what I never ever get used to is the recovery process. It changes every single time. My reactions to anesthesia get worse every time I am exposed. Premedicating really doesn't help. I wake up with a massive migraine thankfully we have seemed to get rid of my allergic reaction symptoms but I still wake up feeling awful. As you know I have a migraine that has lasted for almost two years now. I have not gotten a break and it's 24.7 constant always there. It sucks and being put under anesthesia makes it worse. I get so dehydrated despite the constant high amounts of IV fluids I receive daily, I sleep for days and weeks on end and get almost no relief with the most typical pain medications. I usually end up admitted just because I am so bad and the recovery process lasts just about a month! I know J-tube surgery will be hard in the first place and I'm really not sure what to except. I just know this is going to be hard and brutal on my body.

So yeah to put it that way I am very fearful. I am not the type of person who is scared easily or shows her emotions to people always but this time it's different. Everyone keeps telling me everything will be okay or everything will be good and I just keep shaking my head saying okay trying to believe them because I know what is going to happen. You can't lie to me. I've been here before. The unknown is what I'm afraid of. Not sure what to expect as you could say and it isn't like someone could tell me what is going to happen because everyone is different. Plus my reactions have never been the same it isn't like there is a pattern in a way that we can fix this somehow? I wish there was that would make things easier.

The definition of fear is the belief that something is going to cause pain. Which I do believe something will cause pain and I know what will cause pain. I mean the surgeon said in general the surgery is going to be painful there is no lie about that! I just hope everything goes okay with how I tolerate it afterwards. Emotionally it's exhausting to be in that much pain and just feeling so awful that you can't move or do anything but sleep. I want this to be as easy as possible but I know easy isn't how things work always. We can all believe that everything is going to go perfectly fine until it happens you can say that as often as you want but I don't know. Maybe I am a realist and I have just excepted the fact that this is going to happen and we all know I have reactions and we don't know how to fix them so it is just going to be there. I just don't know how to handle that. It is kinda like just waiting for something bad to happen because you know it's coming you just don't know when.

I feel like I am going on about nonsense now so I probably should stop. I don't even think I accomplished what I really wanted to with this post but oh well. We will deal with that another time. I will try and update as soon as possible after surgery. My surgery is gonna be at 10:30 on Thursday morning. I will be inpatient for a minimum of four days after that we don't know how long it will be just depends on how well I tolerate things but I want to be home as soon as possible!

My friend Michenna wanted me to share her RSD Awareness Video so here it is.... https://www.youtube.com/watch?v=7hIlXo7NNaM&feature=youtu.be Enjoy!

Also here are a few pictures I've taken over the past two weeks of some of the fun activities we've done!




Wednesday, July 16, 2014

You Can Stare and I Don't Care

For many of us who are chronically ill we come to learn people will always stare! And trust me they do that a lot. I don't think they mean to do it on purpose it's just human nature but it always turns out to be really annoying for those of us who are sick. Like is the person trying to be mean or are they just curious? I often find most people are just curious. They see something different and they automatically have to know more. Sadly more often than not these people are actually afraid to ask. They don't want to be mean to that person they are staring at but to us who are the ones who are being stared at it is more mean to not ask at all. Being the person I am I tend to raise awareness and educate those about my disease. I'm pretty positive if you have ever read my blog before or even just know me as a person that statement would be pretty accurate to you.

Obviously if I go to the beach or the pool and wear a bikini people would stare. Heck people stare even when they see lines sticking out of my shirt or my feeding tube pump beeping! I mean trust me I have noticed it causes quite the disturbance at the mall, school, or even church. I don't mind the stares at all. You learn to overlook them and just mind your own business. It is just my life not theirs. I know what I am doing and if they really cared they would ask me themselves. Some people actually do and I basically just explain well my stomach is broken and I just can't eat like you. So these tubes help me eat and I have to get food into my heart/veins plus that feeding tube that sticks out of my stomach.

Yes I have gotten some very rude people and those who are just idiots. Like apparently my tube is just headphones? YES I really got that question! They help me hear my stomach juices... (SARCASM)  Well you actually CAN plug headphones into your feeding tube...Yes I have tried!

People always tell me they are embarrassed about showing their tube. I personally don't find it a big deal but I know many are scared of being judged by others because they do have a tube. They don't want to draw attention to themselves. Or they just don't like the feeling of knowing they need tubes to keep them alive and they don't want people to know about it. My personal feeling and I guess motto is never be ashamed of something that keeps you alive! That's what I've stuck with! My tubes are my life line without them I would literally drop dead. I have been very open about my disease if people ask me about it. No I am not going to publicize it that I am sick but if you ask that's up to you! There are many friends of mind who don't even know I am sick or just never even realized that fact that I am connected to tubes which is weird to me because I mean it's quite obvious!

I guess those of us who are sick don't know how to tell others who just randomly ask and they feel uncomfortable but we also have to remember those who are asking feel uncomfortable about asking too because they aren't sure about our response. Just keep it simple usually they won't try and go too in depth they just want to know the basics and not everyone has the brain of a doctor or nurse! The general it's just a feeding tube because I have so and so disease is enough. Little kids really don't care. I have noticed they stare less than adults! They just take one look and basically ignore it or they ask what it is and you say it's a feeding tube bc I can't eat like you and they are totally fine with it! While many adults are sadly disgusted by the fact that I even have a tube. It must suck to have a twisted mind that is appalled by anything different! I think I could probably teach them a thing or two about acceptance and today's society.

Anyway what I say is let people stare I don't care! It's my life not theirs they can row a boat and get over it!(Isn't that the saying?)  Anyway what I am basically saying to those who are ashamed of what their disease has done to their body is never be ashamed of something that keeps you alive! That's just the way God made you and if that is fine with him then it better be okay with everybody else! Also to those who are the ones who stare and ask questions. Just be respectful about it! Most of us don't care if you do ask questions because all that means is that you want to know more about our struggle and hey getting a quick science/medical lesson never  hurt anybody!







Monday, July 14, 2014

Paper Clouds Apparel Fundraiser for Tubie Friends

A few weeks ago I was asked to draw a design for Tubie Friends which is an organization that makes stuffed animals for children with special needs receiving feeding tubes and other such medical devices. These bears have the same medical devices as the child receiving the bear.

The drawing designs would be sent off to Paper Clouds Apparel to see which lucky four drawings would be used for a fundraiser benefitting Tubie Friends.

My drawing was chosen!!

Anyway this means from today forward for the next two weeks you will be able to buy my design along with three other deisgns. 50% of the proceeds will go to Tubie Friends. While the other 50% goes to Paper Clouds Apparel. Paper Clouds Apparel is an organization which gives jobs to adults with special needs and the hold fundraisers benefiting special needs charities. Every two weeks a new charity is chosen and as you buy your clothing their workers are special needs adults who would not otherwise have a job if it wasn't for Paper Clouds Apparel. They get paid with that other 50% of the money. So this way you are benefitting both amazing charities!

To buy a shirt you go to papercloudsapparel.com Next you find which every design you want and purchase one! Easy as that! You have from today all the way until July 27th. I hope you enjoy our designs and support both organizations! I would love if you bought my design!

Saturday, July 12, 2014

Terminal...

Terminal...I hate that word. I don't hate it in that sense of just someone having to go through that process of life where you die from an illness. I hate it on a personal sense. It isn't just someone to me. That someone is real. I guess it's the story of my life. No I'm not dying and I am pretty sure I won't drop dead tomorrow. I mean I don't know that but at least I hope not.

Referring to the word terminal has always been weird for me. We know the prognosis of how things are playing out in the life of my brother and I. Some days we are doing great other days not so much. I know the medical procedures we endure have complications that can result in death. Yes even diagnosis has that "terminal" word attached to it at times.

How does dying effect me more than anyone else? Most people don't even realize that they are dying. Death just doesn't even seem real for many people. I was talking with someone who said she never experienced death until she was twenty two. I was shocked. Death is just kinda a common thing for me. Sadly I can name off a handful of my friends who have passed away from their illness. "Normal" people don't experience death typically. It isn't something they have to think about. They don't have to worry about dying tomorrow they just don't even feel like it's real until it actually happens to them or someone they love.

 How does dying effect me more than anyone else? The word feels like such a limit. Just because we are sick does that mean we are dying? To me it kinda looks like we are still living! Death is just a process everyone goes through and when you really think about it for a minute...aren't we all dying? Every single day, every minute as a matter of fact we are all getting one step closer to our death the clock is ticking. Okay now that's the pessimist way of looking at it. Well now focus on the positives. If you are reading this I am pretty sure you are alive. Do you have a pulse? That means you are living. At least I am pretty sure that's what the definition was in the dictionary.  We are all alive and living.

Which means we are living while dying. Some people just live their life better than others. I guess that means some people also have to die in a different fashion just like we live in a different fashion. So my question is why do we call ones life terminal such as mine or my brothers when we just know what's going to kill us? Yes our disease probably will kill us if some natural disaster doesn't first. So if we put this the right way then we are considered terminal because we know what is going to kill us. No we do not necessarily know when. It could be today, tomorrow by chance, or even six years from now! That is the same with "normal" people. You yourself could die today, tomorrow, or even six years from now.

I guess to me it feels weird to put a label on someone when truth be told we don't know. I guess maybe I am just someone who is hoping for a miracle and I will be the first one to admit that I am. Holding on to hope that one day we will overcome the odds and I am pretty sure that's gonna happen if you have ever met my brother and I.

People always treat you weird when they find out you are dying. I've noticed that. I know I'm not dying per say but it also goes along with being sick. Most people think just because you have a chronic illness it means it's terminal and it's the end of the world. I'm just trying to be real I guess. Terminal is just a really weird world. To me it means that now I know what's going to kill me. Well actually I am more than likely this will kill me. I don't know and neither do the doctors. That's God's plan. I could get hit by a car tomorrow then this label won't apply to me anymore! No I am not hoping for that at all. I just think people go about the word in a wrong way.

Most of the time doctors give us a time frame. They say "six months to a year." And I don't know that just sounds so weird and so stupid. Why give a time frame on life when you don't know? Is that somehow supposed to prepare the family better? I know I'm not a psychologist but I am pretty sure that would make me feel like shit. I know I'm not the only one.

Doctors give us these words and what happens when we live past them? Or we don't die. We just keep living and the disease doesn't kill us. The words of how things don't look good. Terminal just tears me apart and dying in general. No we aren't dying. We are LIVING. And to me that's a damn good answer.

Friday, July 11, 2014

Our Story: Then to Now

Many of you know I have some amazing friends. One of my best friends is Brynn she is 20 and lives just an hour away. While they all know who she is you probably don't know how I met Brynn. Most of you would assume we had a class together in high school, we met through friends and hung out at a party, or we played sports together. However that's not the case.
This is Brynn and I the first time we met!

Back in November 2012 when my health had completely declined I needed a feeding tube to get the nutrition my body needed to survive. I had reached out through support groups on Facebook, Instagram, emailing, and other such social networking sites. I had found some amazing friends and people who were able to help me cope and to help me feel like I was normal because they were just like me. One of those people specifically is a girl named Christine. Who to me has multiple names I call her Christ or Chrissy not much else. Just a little inside joke for those who know it.
This is Chrissy!

Chrissy and I instantly became best friends and she was slowly introducing me to many other people who are like me. Right after Christmas my brother was inpatient and I was just having a normal talk with Chrissy and she told me about this girl named Brynn who she was going to meet in Florida in a few weeks. So shortly after I typed in her username on Instagram. Brynn was inpatient at the time she had a similar situation as mine due to major allergens to the world basically just like me! So I followed Brynn and she followed me back.



I didn't notice anything weird and I started talking a little with Brynn. Shortly later Brynn was doing better and she was being released from he hospital! She posted a picture and the background looked similar to the hospital my brother and I go to. Tyler was released only days before Brynn. As you know there is that thingy on Instagram where you can tag your location. Brynn had tagged her location to the EXACT SAME hospital Tyler and I go to! I was freaking out! It was soooo cool to have met someone just like me and is just down the road! Brynn had just turned 18 so she was being kicked out of the children's hospital and having to replace it with the adult ward. I still didn't care.


From then on out we started talking always! I had surgery in January and was inpatient for some time and Brynn was inpatient during the same time! We had skyped several times and by the end of February 2013 we met for the first time ever in person. We went to the mall and just talked I knew we would be great friends! My brother was having surgery the next week and so was I! Tyler was having his surgery out of state and it was a major abdominal surgery. We went into build a bear and made him a bear. It was a green St. Patrick's Day bear.
Here is Tyler post surgery with his bear!

We continued talking over the internet and keeping in touch with our health and just being normal teenage girls who talk about music, concerts, tv, celebrities, and more! Once school was out I was finally able to hang out with Brynn when Tyler was inpatient. I spent the day at the hospital and the governor came to visit! Once Brynn's Mom was off work she picked me up and I stayed at her house for the night!

September 2013

My health was declining as July end and August was starting. August brought the first day back at a real school. I was starting tenth grade but only made it 9 days before I became too ill to function. I was admitted to the hospital on a late Tuesday night and from there we started my journey with two surgeries, one picc line placement, TPN started, j-tube feeds, IV medications, and plenty of scans and xrays along with a new diagnosis and plenty of questions. I finally left after a month of being in the hospital but before I left I got to spend some time with my best friend! Brynn came and we just laid in the hospital bed and talked, we travel upstairs to the playroom to play air hockey, and took plenty of selfies.


Brynn and I were finally able to meet up again in the very first week of January 2014 maybe it was December 2013 but who cares? I mean close enough right? We came up with the idea an awareness project we both have feeding tubes. and now at this point we both have a port a cath in our chest. Although that was not the case six months ago. So we got creative and added some beauty to our ugly diseases and show the world even different can be pretty! I'll share some photos here...




Let's just say we raised quite a bit of awareness that night from something that just turned into a small little project and a way for us to pass the time while being goofy and hanging out!


A few weeks later right before I left for my trip to Nationwide Children's Hospital I found tickets went on sale to see Hunter Hayes in concert in Asheville which is a little less than two hours away from Brynn's house. Tickets had gone on sale at 10AM and we finally cleared it with both our parents and bought tickets at 11:30AM. Let's just say we were pretty excited! We had to wait all the way unit April 19th. The night before Easter I met Brynn and her Mom at CVS by the hospital and we were off!

We took quite a few snapchats and it was also very cold! Quite unusual for a spring day in North Carolina but we made the best of it! Of course the sick kids got chairs to wait outside for hours because we just couldn't stand that long! We also made friends! Quite a few actually. Swiss was our favorite at least in my opinion. He works with Hunter and does a lot of his webisode stuff on youtube. Which we actually got to appear in! The song "Invisible" is a huge song for many because it talks about bullying, your feelings, and getting through tough times. Well obviously Brynn and I kinda are invisible girls. I mean having an invisible illness I don't know how more invisible we can get? We are in Webisode number 77 and we actually got to talk to Swiss a lot I think he really cared about what we were saying. I mean I don't see how anyone couldn't care? I mean I think we are pretty adorable if you ask me. Swiss took a photo with us too!

We said our goodbyes and it had been mentioned how we wanted to meet Hunter and raise some awareness and show our story. He said he'd try and just walked off and he came by and hour later saying he'd be right back. What does he come back with?
Meet and Great Passes!

Our faces light up! We were shocked and didn't expect this would happen at all! We made it through security and thankfully they did not give us too much of a hassle.We were just like um yeah we are kinda connected and they didn't seem like they wanted to deal with something like that so they passed us along. We got through and bought some tshirts and then to the bathroom to wash our hands and handle our tubes and what not and we went and waited in line to meet Hunter Hayes. We sat down on the floor and our tubes kinda got tangled together! Ooops chronic illness problems. We ended up attached to each other literally!

We finally got up there and he was completely taken back at first because we both had a good three wires and tubes sticking out of our bodies between meds, tpn, tube feeds, etc... We were like it's okay don't worry about it and he got over it. We told him we were sick and that's why he kept saying "God bless y'all" and it was quite funny. Over and over again bc he didn't have any words! We even told him about the Teens with Feeding Tubes 2014 Awareness video with how we used his song and he was thrilled we were able to do that. Five months later and the video has more than 5,000 views! He signed my backpack which I put TPN, Tube supplies, and other medical devices I may need. He signed Brynn's tshirt and made a video with us for our good friend Sarah! It was the most perfect night ever.
Brynn and I sat in the most perfect seats ever with an amazing view and when the song Invisible came on we belted the song out as loud as we could and just had the best night ever! It didn't mater that our bodies were failing us, that we live in the hospital more than we do at home, that we take countless medications, or that Brynn was just learning how to walk again. All that matter was we were standing there side by side singing as loud as we could like normal girls and just having the best night of our life! We finally made it home around three am and we just talked about the most amazing time we had together and we just couldn't get over it! I feel that this concert was the best thing Brynn and I have ever done together and it really made our relationship that much more special!

I went to her sister's graduation party this May and I got to meet two other chronic illness warriors in our area who I have talked to online but never physically met.
From left to right: (Michaela(me) Brynn Alex, Betsy and Moose the service dog!)

Shortly after Brynn was readmitted to the hospital and she has been there for six weeks at this point. All of this time has been spent in ICU. The doctors are unsure of what is going on and Brynn has been in horrible pain and dealing with episodes left and right that sometimes last for hours on end. She is waiting to be transferred to Boston where she can receive care by a specialist who understands her disease. Throughout this entire time Brynn has been fighting one of the hardest battles of her life and I will be there to support her throughout the entire time! Never wanting to leave her when visiting hours are up!



Both of us have been fighting hard to beat this stupid chronic illness we have and I am so happy I could fight alongside my best friend. I know we both absolutely hate being sick and we wouldn't wish it on anyone in this entire world but we are both very thankful for this disease! Without it I don't know where I would be without my best friend! I know for a fact she feels the same way!

Real friends stay by your side no matter what happens!