Tuesday, June 24, 2014

FIFA World Cup and Disabilities

While on Facebook today someone had shared and article that was posted yesterday regarding a few disabled people at the world cup. The article describes a woman who is in a wheelchair sitting in the handicap parking standing in front of her chair. To read the entire article click here

Many in the chronic illness community are appalled by the ignorance of the authors about this blog. Not everyone in a wheelchair is paralyzed or unable to walk. Did you know 96% of chronic illnesses are invisble? This is why they call our disease an invisible illness. Maybe we look just like you and talk just like you but if you turn our bodies inside out we wouldn't be the same. What I am trying to say is disabled people don't have to look disabled. I mean look at some of the pictures posted of me throughout my blog or on Facebook! I think I look fairly health minus all the tubes sticking out of my body.

Those who use wheelchairs use them instead of walking because they are unable to walk long distances or their legs just don't work right and there are many who are paralyzed. Those who have difficulties walking long distances or issues with their legs are able to walk some. There is a chance some can only go short distances with assistance from walkers, crutches, other people, etc...

One thing the world does not understand is there are many different degrees and types of disabilities. While a person with Cerebral Palsy may not be severely effected by their disease, another person with the same condition may be completely wheelchair bound. As you know my brother has mitochondrial disease and his in a wheelchair for when we walk any longer than a community distance. His little body has no energy to walk that far before his legs start giving out. Yes Tyler can walk, play, and dance. However he does need the chair to conserve his energy. The whole "but you have walked before" stuff doesn't apply!
While I do not want anyone judging those with disabilities who need a wheelchair. I also feel those who are "faking" should be caught and punished for it. Yes we need to accommodate those with special needs but we also want to be careful. The article claims there are multiple pictures of fans in wheelchairs standing and cheering on the team as they jump out of their wheelchairs. They believe concession tickets for the disabled were bought by those without disabilities due to the slim number of tickets allowed. Brazilian authorities are investigating the situation due to dozens of those with disabilities were seen standing.

I agree while SOME may have been faking their reason to use a wheelchair. However there are many who did get tickets that were disabled. I hate how the article claims that if you are in a wheelchair you can not stand. The reason many are wanting these disabled tickets is because one free ticket is allowed for that one specific person who is in a wheelchair due to their disability. There's roughly 30 different photos posted on social media sites showing those in wheelchairs standing and currently authorities are investigating 22 of them.

As many look at the situation there is an advantage to being in a wheelchair due to the free ticket. Clearly many are taking advantage of that due to the limited number of tickets and the ability to make a profit by selling tickets on the black market. If this was me I would not want my picture to by posted all over social media sites just because I was able to stand out of my chair. These people took photos to show those who they believe are faking yet they don't know if that person really is faking due to the fact they don't know that person on a personal level.

Those who are faking need to get in trouble with the law I completely agree! Yet in the process we are also pointing fingers at those who are really disabled. The truth is we don't know the entire story about what really happened or if this person really needs a wheelchair. I hate how people think of those with special needs fake their disease just because of those idiots who think it is cool and fun to lie about something like needing a chair. As I am sure your mother has said before do not judge a book by its cover! In today's day and age we don't know who is and which person has what disabilities or even if they do have one.

All I ask is that people understand not everyone in a wheelchair is paralyzed or completely unable to walk. There are many different types of disabilities and everyone is different on how their disease effects them. While there are some who fake their disabilities there are many of us who do really have disabilities! Please don't judge us based on another person you have met. Everyone has different disabilities just like everyone has different personalities.

Saturday, June 21, 2014

National IV Drug Shortages

As many of you know both my brother and I rely on TPN to survive. TPN is IV nutrition. TPN is a mixture of lipids(fat), vitamins, additives, heparin, free fluids, and carbohydrates. The mixture depends on what the person needs in their body and how much they need. TPN replaces food for when a person is unable to eat enterally. Whether they can't eat food itself or they are unable to tolerate formula through a feeding tube into their stomach and/or intestines.
That big white bag is TPN.
Both my brother and I have a paralyzed digestive tract. Basically what that means is our digestive tract is unable to move food and liquids through our gastrointestinal system. Food will literally sit in our stomach for days before we either vomit it back up, drain it out, or by some miracle it moves even the slightest bit. The disease is called Gastroparesis/Digestive Tract Paralysis. Gastroparesis literally means paralyzed stomach and Digestive Tract Paralysis is pretty self explanatory. Tyler and I first started out relying on feeding tubes but soon our disease progressed and now we are fully dependent upon TPN.
My feeding tube which was surgically placed in my abdomen.
My brother, Tyler and I.
TPN is administered through a central line in the chest and or a picc line which comes out of your arm. The line travels straight to your Superior Vena Cava in your heart. So basically we eat through our heart. Sounds pretty cool I know but it's also very serious. There are many complications that can occur due to a central line you can have an infection resulting in sepsis, you can develop endocarditis, blood clots, air embolisms, hemorrhage, bruising of the blood vessels, punctured lungs, arrhythmia, death, and many more. Tyler and I have been to the hospital multiple times due to complications from our lines and it never gets easier. While these lines do have many complications they are also the only thing that is saving our life and sadly you have to take the good with the bad. Either we die due to lack of nutrition or we risk dying due to a complication. What's the lesser of the two evils? That sounds quite harsh but sadly it is reality for so many families.
Family
Not ashamed of my tubes!
Tyler has a central line which is called a broviac which is surgically placed in his chest and the tubing comes out through the entrance point and you use it to infuse TPN, IV fluids, and IV medications. I have a port-a-cath. Which is surgically implanted under the skin and you use a needle to access. When I am not accessed I can shower like normal, swim, and do anything I want. I have to be accessed everyday and I receive medications every six hours there for I have to have access to my blood stream. Some people have issues with being accessed however I don't I don't think it hurts. I even access my own self! It is quite easy to stab yourself with a needle by the way! Who would have ever guess?
video
Accessing my port by myself!

Tyler's Broviac placement
In the most recent years there has been a struggle with IV drug shortages. Tyler and I have been effected. Due to lower numbers of minerals and other medications we are unable to receive important vitamins to our daily TPN. Phosphorus, magnesium, B12, copper, lipids, and even normal saline are some ingredients missing from our TPN! Yes you heard me right normal saline! Many hospitals are limiting the amount of normal saline given to a patient just because they do not have enough to be able to properly treat a patient. Babies, children, and adults are dying yet nothing is being done to help them! If it was you or your child who was dependent upon TPN due to a disorder, cancer, a premature baby, and even an accident patient would you want the best care possible? I know I would. Every week their is almost something shorted from our TPN. For example I am only allowed to get lipids four days a week due to the IV drug shortage. Lipids which is the fat to help us gain weight is very low in numbers and they have had to limit patients ages 12 and older to lipids only four times a week and if you are more than 50kilos you are also required to only receive lipids four times a week. The basics are missing how are we missing the basic IV medication patients need to survive?
The newest trend going around by actors, actresses, athletes, and celebrities is called "IV Therapy," "Vitamin Drip," and many other names. These "medical spas" sell IV vitamins to patient to recover from a hangover, partying to hard, jet lag, and to just get a boost of energy. Names of those who use these IV vitamins go from Simon Cowell, Ryan Phillippe, Cindy Crawford, Madonna, Rashard Lewis and many more. While these people are just getting IV vitamins to get an extra boost when they have partied to hard their are patients like my brother and I who are fighting to survive. Yet we are denied these IV vitamins while celebrities are able to get their IV vitamins as they please. I'm disgusted by this "glamorous" trend. Do these people realize CHILDREN ARE DYING? Patients like Tyler and I are forced to go without these vitamins, while celebrities get the exact same ingredients and vitamins we need! How is that fair?
Getting to eat for the first time in 14 months! (Yes I was crying)
Emergency Surgery November 2012
Just a few of the missing IV medications, vitamins, and ingredients are: lipids, calcium, 0.9% Injection Bags, selenium, copper, B12, Zofran, Vitamin C, Magnesium Chloride, Zinc, and many other different vitamins. All these drugs are currently in shortage however these "medical spas" can get as much as they want without any issues. I find it quite depressing when celebrities come before dying babies and children...
A few days post picc line placement.
 My best friend, Brynn who also has a chronic illness.
November 2012
TPN is the only way my brother and I are alive! If we didn't have this we would have been dead a long time ago. I'm begging you to help us put a stop to this trend. If the national IV drug shortages just keep continuing more and more children/adults will be dying. The shortages will only get worse and we will be deprived of more and more vitamins that we use to survive! Do it for my brother, premature babies, children, adults, and me. I only turned 16 a few days ago and my brother turned 9 last month. We have a lot more to live for! We were put on this earth for a purpose and what purpose is that if we haven't been able to live our life to the fullest?
February 2013
September 2013

May 2014

I hope our story opened up your eyes a little bit. Please share and help us raise awareness of the National IV Drug Shortages!

Thursday, June 19, 2014

16?

I don't wanna get a little soap opera on everybody but this year has honestly been the hardest in a long time! Ever since last August I have had the hardest time when managing my health. As the months have gone by I am thankfully becoming more stable and more manageable. I am still on TPN, still not able to eat, I have a massive migraine always, and of course I am still sick and dependent upon many medications. My health went down hill fast this past year. I've realized that life is really hard but I can keep fighting just as long as I have all the strength and courage. I am hoping that over the next year I keep getting better and I keep fighting. This past year has been hell and I am ready to leave it all behind. I want off TPN and yes it is going to take a lot of work to get there however I'm ready for that challenge. I understand that I may not be able to come off tpn but I want to try. I want to be able to at least say I tried because that's all that matters! Anyway yeah it's my birthday! :) I am turing 16 and I got exactly what I wanted a brand new Nikon camera. I will be spending the day at home with my family. We are also preparing for my brother's 13 birthday! I'm terrified that he's turn 13 tomorrow! Yes we were born 3 years and one day apart. I'm kinda thankful we weren't born on the same day! Not that I don't like him or anything but...you get my point.

Wednesday, June 18, 2014

You never know who's listening

A local friend with Gastroparesis just like me sees an adult GI doctor here. She had an appointment today with him and he told her about me. Apparently he was out our church on Youth Sunday when I was speaking about living with Gastroparesis and how it's modeled my faith. He said he heard me talk and told her I was absolutely phenomenal! Little did he know I am good friends with this person! Anyway if you want to see my sermon from Youth Sunday click here: http://youtu.be/Vjl6w8uNRRI

Sometimes...

Sometimes I have a hard time understanding...

Why did this happen to me?
Why did I get Gastroparesis and someone else didn't?
Why do I take so many medications?
Why is it so hard?
Why does food make me sick?
Why do I spend so much time at the hospital?
Why do I have so many doctors?
Why do I have tubes sticking out of my body?
Why do I feel so sick?


Why me...?

Monday, June 16, 2014

Donate Blood

Did you know less than 7% of the world donates blood? There is nothing more I have ever wanted to do in this world than donate blood. When you turn 16 with a parent's permission you are allowed to donate assuming you meet all the qualities. I turn 16 on Thursday. I have a parent's permission however I do not meet the qualities. Due to my disease I have become anemic and several other vitamin deficiencies that come along with not being able to eat. Mainly my iron deficiency. The iron deficiency had caused anemia so I needed oral iron supplements into my J-tube. I was not absorbing the medication and was referred to Hematology where I received IV Iron infusions. I don't remember how many I've had but I haven't needed one since April. As we believe my numbers have finally stabilized as to why I haven't received any infusions. My numbers are good and we think now my body has gotten itself back to normal and hope it will produce iron on it's own now. Low iron can lead to a number of other problems and can be a result of many other conditions. Mine being Gastroparesis. This means I am not allowed to donate blood. I really wanted to have this opportunity as I have seen many personally be dependent upon blood products. Patients with cancer, blood disorders, and trauma victims all rely on blood as many others with other different conditions. I am asking all my friends who meet the requirements to donate blood if they are able in honor of me! Although, my wish can't become true you can help those who need the blood by donating for me! Please remember that although you may be denied the first time you have tried to donate blood you may now be eligible either now or in the near future!

For more information on blood donation and facts please click here.

Sunday, June 15, 2014

Life changes forever when you are sick

When you get sick your life changes forever. Suddenly the things you thought meant the most to you don't matter anymore. One moment you are worried about what to wear to the party and the next you are worried about staying alive. Being sick definitely changes your perspective on life.

I know I won't ever take another moment for granted. Life is precious. It doesn't always turn out how we want it to. Maybe today you are the healthiest person you know but tomorrow you are diagnosed with a disease that has no fix...and that changes everything.

What I'm trying to say is nothing in life is ever promised. Maybe we will live for another 50 years. I know I would love to live till 100! I'm quite a far ways away! I only turn 16 on Thursday! Tomorrow could be your last day maybe your life will end in a few months from now and who even knows if today is the last day we will live here on earth. God does some crazy things!

We don't understand why God does these crazy things but if I do know one thing it's that God doesn't want to hurt us in anyway. Everything He does is to help benefit us and make our life exactly the way he wants it to be!

Becoming sick has made me realize the power of God and prayer. He helps me make it through the day when I am so much pain and i just can't handle it anymore. As long as you pray things will and do get better eventually God leads us to the right path! The plan we have for ourselves doesn't even compare to the plan God has in place for the rest of our life.