Invisible in a visual world

Welcome, I wanted to share with you the amazing doors that have been opened in my life and the opportunities I have been given. I also wanted to tell you a bit about a struggle I’m dealing with because of those opportunities its what made me feel so inclined to do a blog about it.

First of all though, I think I should explain a little about me. I am a 22 year old male who lives with my parents with several rare diseases who had a stroke when I was 4 and the doctors told me I’d never live past 5. After the stroke they didn’t know if I would ever walk or talk again. Well, Now I’m proud to say I’m throwing, and making pizzas by scratch!

About three months ago I got a job at a place called Pizzability. It is a pizzeria that hires people of all disabilities, medical, developmental, or intellectual. Pizzability has literally changed my life. I went from a person who never thought he could make it in this world because of all my medical and developmental disabilities to one of the chefs at at Pizzability. Their specialty is not only to hire disabled people and teach us life long skills and how to make a sustainable income, but also they cater to the disabled customers with special utensils for people who need the additional support and they will blend up the pizza for people with g-tubes, it is wheelchair accessible etc. Pizzability just opened a new business called Brewability. It has the same owner, concept and everything, only its a brewery and we will be bartending, talking to people and developing our social skills while our managers teach us how to do everything to the best of our ability.

Anyways, back to the topic, and how it made me feel so inclined to write this post.

Since customers know my employer hires almost all disabled people, I’ve actually had people ask me to my face, “What’s your disability?” Now I’m very open and happy to answer that question, but it just makes me sad and breaks my heart a little bit because invisible disabilities are not understood in this world and there is very little awareness or education about invisible disabilities. Also I’m pretty open to share, but someone else may find it a bit rude to ask that. I’m comfortable with it because I want people to better understand Invisible disabilities, but know, not everyone is.

Yes. I don’t have Down syndrome and I’m not in a wheelchair, I can walk and I can talk so people don’t see me as disabled. Some people don’t even believe me when I say I have disabilties. It’s like I have to prove it. I really want and need people to understand that not everyone’s struggle is easily seen on the outside.

I’m sick and fighting rare diseases. Aree you supposed to make yourself look sick so people will believe you are disabled and not question you? If you don’t do life with me you may not see what is hard for me to do that is easy for others.

My thoughts on this issue. I don’t see any way around it. How are you supposed to make people believe you so they wont question your integrity? To be honest its just an issue that we will have forever i think the way around this is just believing the person. I mean why would anybody make up a disability? I would rather have no disabilities at all. I’d love to go to college and learn to drive, but I can’t. I have to live with my parents (I have a super sweet tiny house though) because I can’t take care of my medical needs. I need people to help me with them and need someone around to make sure I don’t get sicker or struggle to breath. I can’t eat like normal people because my stomach and intestines don’t work right. My parents bring me to work everyday because they are awesome and want me to have the fullest life and learn these amazing life long skills and how to make a sustainable living like a normal person. I think people just need to be more educated on knowing not all disabilities are visible. There ARE people who can look completely “normal” but have so many disabilities. You just never know! Everybody is fighting their own battle you cant always see it on the outside but you may find out by spending some time with them. Don’t just assume stuff! That’s what’s dangerous. Assuming is bad! We need to take time to understand each other and not judge so quickly.

So, that’s what I felt so inclined to say with this post: Don’t just assume peoples story, you have to realize that visible disabilities are not the only disabilities. Keep an open mind! Your not fighting their battle, so you can’t assume what you don’t know.

I’d also like to explain a little more about Pizzability and how it has literally changed my life so much. I went from a person with absolutely no hope for being a “normal” person to having this amazing job that teaches me these useful skills and my coworkers have truly become a second family. I LOVE them all so much they are all so positive, and that makes me positive! Brewability is the new sister company of Pizzability. It Is a brewery that will teach us even MORE skills and just open more opportunities and doors. Maybe even give others the idea that hiring people who aren’t like them is a good thing. We are so appreciative that we work really hard and love our jobs so much that we usually show up to work really happy. I have been working so hard to get better and better at my job. To constantly learn something new. The manager taught me how to flip pizza dough and two hours later I could actually do it without ripping the dough. Because of all my hard work, my first month they asked me to be the assistant brewer of Brewability. I’m so honored and excited that I’m going to learn something new. You know the day you stop learning is the day you die. I am SO happy my life is turning around and I am no longer defined by all my medical struggles but rather my abilities and hard work. This place literally changed my life for the good and i cannot tell you how happy I am! This is truly God working in my life. I went from depressed with just a few friends and really no hope of life getting better. I would sit and dwell on my pain, my job lets me distract myself from it. Before my job, I didn’t have a purpose. And now I do!

Please come visit me at Pizzability and Brewability! I’ll make you a pizza with love or pour you a beer with it, then I’ll introduce you to my new friends. I think you’ll really like them.

If you want to contact me about coming to see me, have any questions I can answer, or you want to tell me what you think about this all please comment down in the comment section and I’ll get back to you! Also if you have any ideas on how to spread awareness about invisible disabilities that would be amazing.

Thank you so much for reading this I hope it helped and if not I just hope you enjoyed reading! Please follow me and come back again. I hope to post more soon. PS: keep warm its getting cold outside 🙂

God Bless.

Neuroplasticity

Neuroplasticity

I wanted to spend a little time telling you about something that has really helped improve my life. I used to spend a big part of my day dwelling on pain. I had lived with pain so long that it was a part of my life. I didn’t know how to overcome it. No matter what I did or took, the pain would seep through. I found that I was no longer living, but rather existing.

Last year one of my doctors told me about a program called PRC. It stands for the Pain Rehab Clinic. Its at the Mayo clinic in Minnesota. They told me if I went I would have to be very dedicated and be willing to work hard to get my life back. I was in a place that I was ready to give up. That I couldn’t live my life like I was. No pain med worked anymore. I needed to do something if I wanted to find any joy in life again.

PRC is a 30 day program. Last November I went to the one for teenagers. The kids there were like me. Dwelling in pain. They had lived a big part of their lives trying to figure out how to survive with pain. We all needed help learning how to manage it.

We all learned how to have a productive day. We learned to focus on other things. Our day included working out for an hour everyday. Recreational therapy, art therapy, group therapy and learning other ways to heal our bodies without pain medications. We learned that we may have to accept that we would never be pain free, but we could still live a good life. It’s not easy to accept that you’re never going to be like everyone else and live without pain. But learning that we could better control it was key. Did you know that pain meds only work for 5-7 days and then they really don’t work anymore? You just keep needing more and more and then they cause more pain because you get hyperalgesia. They were never meant to be used for more than that many days.

PRC kept us really busy. We started at 7am and weren’t done til 5pm. Then we were required as a group to go out and socialize. We went rock climbing, ice skating, did archery, laser tag. We went to the mall and did anything that kept us busy. We built some cool friendships too.

We learned to be productive and were taught not to think or talk about pain. By thinking and talking about pain we build neuropathways to it. By keeping busy and being productive we basically trick our minds to not dwell on it and build new neuropathways. You basically work on healing your brain this way so its not so sensitive to pain and it can’t rule your life.

I learned that pain had become so much of my life. I missed out on so many good things to dwell on the bad pain. I learned to stand up to pain. I think that was the main point of the program.

We learned to deep breathe too. Deep breathing makes your body more relaxed. It helps you break through from the stress pain causes and helps get rid of symptoms. I’m not completely sure about this, but they told us it prevents you from regurgitating. Deep breathing helps manage the pain at the moment and puts you in a much better mood.

I’m really glad I went to PRC. I learned how to better manage pain. I learned how to build new pathways in my brain so I won’t hurt as much which is what neuroplasticity is. Did it take away my pain? No of course not, but I can better deal with it with the tools they taught me.

Through this experience I’ve met a lot of new people. Some of the teens I still keep in contact with and they’ve become friends. I’ve also learned how to be more responsible and organized.

So, if you have pain and dwell on it, and you have $50,000 or really good insurance, I would recommend you check it out. It helped me and it will help you to if you’re open to it. You have to have an open mind and be willing to work hard. It builds character and teaches you useful tools.

The program will exhaust you and you’ll most likely want to quit a few times, but just persevere and pick up your chin and grin and say……I can do this (and the sun will come out tomorrow). You’ve got this. Take your life back.

I would like to thank you so much for reading my blog. I really appreciate you taking the time to read this and would like to encourage you to comment below what you think. Have a great rest of you day. Hope this wasn’t too “painful” to read. God bless.

The Power Of Positive Thinking

Sometimes I wake up and I wish I was someone else. I wish my body didn’t hurt so bad and that each day wasn’t a struggle. Have you ever felt that way? Thought life was just not worth getting up for? On days like these, I’ve learned to think positively. What is positive thinking?
Positive thinking is thinking everything is going to work out and or thinking highly of someone or something rather than thinking negatively. It really helps your perspective. Since I spend a lot of time in hospitals I’ve learned this is really important because you obviously want everything to go right and it gives hope in trying new things. When you think negatively, like thinking something isnt going to work, it probably won’t.
Positive thinking really plays a big role in happiness. I think if you start thinking you are unhappy, it usually goes to your head, and it actually will probably make you less happy, and vice versa. As well as if you believe you’re going to be successful you probably will actually have a better shot at acheiving your goal. Positivety can honestly change your whole perspective on life and life itself for you. If one is positive about everything in life, they are just happy, they find the good in all things. Sometimes life makes it hard to be positive but if you work at it and truly look at the full picture, you can find good in almost anything. Recently there was the terrible shooting in Las Vegas. What a terrible tragedy. So many lives lost needlessly. We feel sick about it and are so saddened. We need to honor them, but I think those that lost their lives would want us to focus on the difference they made in life. There was also a lot of heroes that came out of that terrible situation. I think we need to try and focus on that.
Positivety is the key to happiness. when people ask you “How are you doing”, and you say you are not doing well, you start thinking it in your mind, and your body starts believing you’re not doing well, and it becomes a fact eventually. I think if you say you’re doing well, your body will believe it, and it will become a fact. I know it isn’t easy to do. Sometimes life just doesn’t seem to go the way you want to and you slip into negativity. That’s ok, the next day you just get up and start over. That’s the blessing of life, each day is a new start. You get another chance to do things better.
When you are in the hospital alot like me, you must be positive in able to get better. you say “This is going to work” you will have a better chance of the treatment working. Same thing if you are thinking negatively you dont have as good of a chance of the treatment working as if you were positive about it. I believe God can heal me, and if he doesn’t, well then there is a bigger purpose. A purpose I can’t understand now, but I will someday. I can choose to be angry that I’m sick, or I can choose to try and make a difference in the midst of it. I can use the time that I have to do good and I hope to help others.
The message i would like to send with you is to be positive, think positive. Thinking positively can really change your life and give you a higher success rate of achieving your goals. It will lead to happiness, and will make you more confident and have more peace of mind. Negativity will lead to unhappiness and depression. Life isn’t always going to be perfect. We will go through sadness and some suffering, but we aren’t alone and we can get through it. My favorite bible verse is Psalm 30:5. It says, “Weeping may endure for the night, but Joy comes with the morning.” We have a right to weep and feel sad, but we need to know that joy will come with the morning. We will find happiness again and if we are searching for the good, we can be positive and find it quicker. I know, sometimes morning doesn’t seem to come quick enough, I’ve been there. On a night that the pain is so bad I can hardly stand it I focus on that fact that I am not alone. Christ is beside me and that there will be a day I will wake up and have no more pain.
Is it hard for you to be positive? Do you struggle with finding the good in all things? I challenge you to spend one day, looking for the good, counting your blessing and practicing gratitude. It is life changing and so freeing. You can do anything, you just have to believe.

Best Prom EVER!!!

Best Prom EVER!

This Saturday, at Thomas Jefferson high school, I had the best night I’ve ever had in my Life! It was my senior prom. Last year I planned to go, but ended up in the hospital instead. I redid my whole senior year again because I was in the hospital way to much and I missed all of the things you get to do as a senior.

I have the most amazing friends and they came to make my night as special as they could possibley make it. The people that came were two bronco players, And three bachelor contestants. They are the coolest people ever, and made my night so amazing. The ones who came to share the night were Brandon McMannus, Riley Dickson from the Denver Broncos, and from the bachelor were Ben Higgins, JJ Lane, and lauren Bushnell and one of my best friends Dylan. My date, was my moms friends daughter. They went kindergarten through 12th grade together. So, Not only did i have all these amazing people, but i also had an amazing, beautiful date.

So the reason we got all of these amazing famous people was one of my good friends JJ Lane, We ran into him in the mall. I really think God put him there just at the right time. I told him all about the night, and how i did not have a group to go with. I do not know a lot of people at TJ because I’m always in the hospital so I don’t have any friends. JJ right away said he would go. He hadn’t gone to prom yet. He called up all of these people and asked them if they would go, and they said yes. I did not think that they would actually come considering they are all such busy people and are famous and just did not think they would be able to make it so I did not get my hopes up. I didn’t want to plan on it and then feel bad because it didn’t work out. That happens a lot to me for some reason. So I wasn’t going to let that happen again. Anyways, he texted all of them and got them to go, and I could just not believe they said yes.I was out of my mind excited.

My mom was making plans for me. When she talked to them she gave them three options. She said “Would you guys like to meet up at Olive garden, pictures, or the dance?” Not thinking they would ever want to show up for pictures to a teenagers prom. I mean they’re really busy because they’re so cool. She gave them those three options, and thought for sure there was no way they would ever want to come to pictures, they surprised us all, and said “No, We’re all in, we’re comming to all of it, pictures too!” So, They came to that as well. My school was really cool and said they could all come. I couldn’t believe it was all working out.

If anybody watches the bachelor, they know the bachelors and the rose ceramonies. i wanted to let them know I appreciated them so I got all of them Red roses, and asked all of them “Will you accept this rose?” I put them all on a silver platter with my grandmas help. They all said yes. I maybe should have just asked them if they’d accept this rose and be my friend.

We drove in the coolest car ever, a bentley SUV, a $241,000 car and it was by far the nicest, and most expensive car I’d ever gone to prom in. I could not believe how nice it was. We didn’t eat or drink in it, you could never eat or drink in a car like that. I don’t think my house cost thaat much. I’d have to live in it if I had one of those. Anyway everybody thought it was just the coolest car Not only a kid driving to prom in a Bentley SUV, but Brandon McManus and Riley dickson were driving us. Everyone was so nice. Ben gave a super cool toast two times and Lauren and her friend were so nice to me. They all were nice to me. They stayed the hole night and even went to after prom and rode the big trikes and ran through the blow up obstacle thing. It was the most awesome night ever. It really was like a make a wish, but even better because they did it because they wanted to. They didn’t do it because they had to. That means so much to me. They are really my friends. They didn’t do it for publicity or anything, they did it because they care about me, and honestly, that’s the best part of the night. I have some new friends and they’re super cool. I don’t have a lot of real friends just Dylan and JJ , steven and Peter and Mr Kontrelos so they mean a lot to me.

So, Overall, It was just a truly amazing, magical night.

and was by far the best night I’ve ever had, and the best prom i’ve ever had.

 

Pain

Pain is all incompassing.  It touches every part of your life and makes everything a chore.  You struggle to find enjoyment and search for relief.

There are two different kinds of pain.  One called acute pain which is something that comes on quickly and then disappears.  The other is called chronic pain.  It comes and like a bad guest, never wants to leave.  I struggle daily with chronic pain.

Pain is by far the worst feeling in the world, it steals all enjoyment from you and even little tasks are overwhelming.  I would rather be paralized than to live with pain.  Although pain can protect your body by warning you when something is wrong, it can also tear your body apart.

Pain is like the devil’s way to create hell on earth.  I never knew how depressed you can get with pain, especially when it’s so bad you don’t know what to do with yourself.  It can become a never-ending hell hole that you feel you can’t escape from.

Pain obviously is an unseen sensation for which only the patient experiencing it can understand.  When you go to a doctor, they honestly don’t do much of anything except prescribe pain meds, which bring temporary relief for an hour or so after taking it.  Sometimes I wish pain was a deadly disease in which case doctors would try harder to fix it and find an answer.  Maybe then they would do more research on it.  I see it become deadly when people feel they can no longer handle it and no one can help and they lose hope.  They then choose the cowards way out.  That’s so wrong because you need to fight on and you need to keep your hope.  Sometimes it’s all you have.  If it were a deadly disease, I think I would have been dead years ago.

I know it is maybe not right to say, but I sort of envy my grandpa who died a month ago.  Only because he is no longer in pain.  When he was alive, me and him would always complain about pain and how it affects your life.  How it devours and ruins it at times.  It is practically impossible to understand someone in such bad pain unless you your self have endured it.

Pain is like a barrier it keeps you from doing anything in life, literally.  You can’t enjoy anything.   It is easy for other people to say, “think about something else, distract yourself.”  So easy to say for them, but hard to do for someone in pain.

Because of the pain, it’s literally impossible to sleep.  I am not exaggerating.  I try my best to distract myself, even if it means taking a bath at 1am, 2am and 4am.  Just to try to hopefully get rid of the pain at the time.  It gets me nowhere because after I’m done and get out, it gets horrible again.  Pain is horrible at all times, but for some reason is even worse at night.  Probably because I’m just sitting there focusing more on the pain and there is nothing else to think of.

Life is pretty hard to even exist in when you have as much pain as I do.  I’m trying really hard to find ways to handle it.  I have tried hypnosis, acupuncture, I listen to binary beats all the time.  I google a lot to find if there are any other suggestions of things to try.  It seems pain meds don’t work well for me.  The work for such a short time and then wear off and I sit in agony so I need to try new ideas.  I have tried essential oils and yes I tried cannabis.  Everyone told me that it would help.  I get really excited for something new, and then get let down.  I even tried something called a celiac block.  That didn’t work either.

So my question of the day is: Who created pain?  Did God, or did the devil to create hell on earth for people?  Ultimately making you question your faith and question why Jesus would put us through this?  I’d love for you to comment to me what you think.

That’s the problem, when everything goes wrong, we ask Jesus why he let that happen.  Why would he allow pain?  How could such an amazing God let you endure such pain?  In reality God doesn’t do everything of course He has a greater plan for all of us.  I think he feels the pain we feel too and shares it with us.  If I didn’t know him, I’m sure my pain would be worse because I wouldn’t have him to bear it with me.

I was watching Dr Phil the other day and there was a girl who was a “sugar baby” who was only 19.  She would meet random guys and take a lot of risks.  She was in a dangerous “business”.  Her sister had died two years before from an overdose and this girl was now taking drugs too.  Her family was really angry and asked her how she could do this?  Her response was “God has a plan for everyone, and if its in his plan to die in a week, then let his will be done.”  This kind of thinking just makes me really mad. They are basically saying God is in their bad choices.  Doesn’t she know about free will?  That’s not part of Gods plan for her life.  Dr Phil made a good comment back.  He asked her “do you think God is the one sending you sugar daddys and making you prostitute yourself?”

The point is, yes God does do miracles and I’m praying for one of those, but there is free will, we aren’t puppets, and there are things that happen we can’t control and won’t understand.  That doesn’t mean that everything is from God. We can’t blame everything on God.  We need to trust and turn to him for strength and he will get us through it.  My mom said if God brings us to it, he will bring us through it.  We just need to trust.  I choose to trust and to fight on, even when I feel like giving up.  He will get me through.

What do you think?  I’d love to here your comments and thoughts on this.  Thank you

 

 

 

Fundamentals of Caring

How do you know whether someone truly cares or is just acting as if they do? Are they just “being nice” or doing their job and you are just another number?

This is a very tough question, and can be very confusing!  Whether its regarding friends, family, doctors, nurses or really anyone, we’ve all had those times. It presents a very tough situation for everyone, but it’s especially tough when you are always sick and dealing with health care givers. That’s literally their job to be “caring”.  You also have people who say they’re your friends, but you wonder if it’s out of true friendship or pity.

 

So, I’ve learned to ask myself lots of different questions. I have made a list of characteristics that determines if  a health care provider really cares, and if a person is really a friend or just pity’s you.  I want to share with you what I came up with I call it the true characteristics of fundamental caring.

 

First, a person who truly cares is not fast to judge, they trust the other person. Second, they do not assume they know the whole story. Third, they listen with their complete attention, and talk to the patient or friend with an open mind and are understanding.  Fourth they do not act like they know everything, and understand people are all different.  Fifth is empathy (as I  was nicely reminded).  They need to understand another’s feelings and share them.   Not just have sympathy for them.  Lastly, and I think most importantly especially in the medical field, they do not make assumptions based on appearance, and what they “see”. I was watching the movie the fundamentals of caring, which inspired me to write about this. In the movie throughout they remember this one word. “Aloha” (A=Ask) (L=Listen) (O=Observe) (H=Help) (A=Ask again). Another great example of the perfect care giver. If you honestly take all of those characteristics and truly take them seriously, and “Become” those characterizations, I think you will be a great care giver and a friend.

 

When you are in a hospital, it’s very important to find and build a team of providers who have the above abilities. It makes all the difference in the world.  You can work together with fewer problems.  A nurse  who truly cares about you is positive, friendly, but most importantly they just believe in you.

 

As a friend, the person wants to spend time with you, they want to learn about you and they aren’t just nice to you when things are bad, they are there in the good and bad times.  I’ve had to learn this the hard way.  I thought people were truly my friend, but really it was pity.  I don’t ever want pity.  I don’t think anyone who is sick really does.  We want people who understand us and believe in us, which is a whole other blog I’ll have to write later on down the line.  I also want to write at some point how lonely the hospital can be and how hard it is to have real friends and make friends.  That’s why it’s so important that you have good nurses.  They are not only your nurses, but you talk to them more than you talk to friends.  They need to truly care.  I’ve been really blessed to have some amazing nurses and doctors who definitely fit my “Characteristics of fundamental caring”.

 

Another important thing I want for people to take from this post is, Just because someone looks good, doesn’t mean they feel good. Personally, I have a positive attitude so I try to distract myself from the pain, and other symptoms by singing, joking, and interacting with people.  Typically it helps a lot distracting myself and not lying in my bed focusing on the pain, but rather keeping my mind occupied and trying as hard as I can to ignore it. Of course it does not completely take my pain away obviously, but it does really help. Also, it makes me look “friendly” and makes people “like” Me.

 

The message I’d like this blog to give you is, we all need to learn to care. We should not make accusations, or judgment until we know where the person is coming from. We need to be more like Jesus.  He reached out to everyone and he loved them.  We need to understand others.  Jesus never showed pity, he showed understanding.  I want to be a friend like he was.  Kind, understanding, but holding eachother accountable.  I think then the world would be a better place.  Do you want to join me?

Please let me know.  Leave a comment about what you think about caring.  Do you have any other characteristics?  Is this helpful or am i just crazy. You can tell me. I can take it and I want to get better. Thanks

Props and thanks to my brother from another mother who inspired me to write this blog post Your the best, Christopher J! =)

 

Actions speak louder than Words

 Living in the hospital, at least from my perspective, is very hard. It becomes even harder when you actually are getting prepared to get discharged. You need all of your prescriptions, have to get your post hospitalization doctors appointment scheduled, know which medications to give at what time, and figuring out who willtake care of you,  Etc.. 

The hospital is very confusing nothing is ever set in stone it’s like a roller coaster. Many times they get your hopes up only to later have them crushed.

One of my biggest struggles is when my team of doctors and others start to talk about discharging me months before I actually am going home.  It really does stink because you get your hopes up, and yourheart is set on going home. You start planning all the things that you want to do, and you tell your friends and family that you’re going home.

My point is, they need to get it right. Simply saying you’re going to get discharged on a certain date is very easy but to actually do it is a completely different thing. Don’t get patients hopes up and then everything changes. Am I sounding a bit salty? It’s coming from again hearing these words and then being stuck at the hospital.

 Actions speak louder than words. It is really easy to say something but to actually do it is completely different, it takes effort and can be uncomfortable or hard. If you aren’t going to do something, then don’t even say it. I’ve learned to always be ready for the worst case scenario rather than the best. 

Life isn’t ever really fair. Living in a hospital, you learn that there are a lot of promises and conversations made, and then they don’t follow through or they’re scared to tell you the truth. Sometimes it’s that one of your favorite people is going to stop by, and they don’t. Maybe its that they’ll be able to fix something and they can’t. It could be that they’re going to send you home, and they’re wrong. I think sometimes people need to really think things through before they say something, because we really get let down when they don’t have the actions, and only have the words.

 

Transitioning from being in the hospital for months on end, to real life is very challenging sometimes. You go from lying on a bed all day everyday for months on end kind of in a holding pattern to trying to live again. It is very hard. In the hospital, you have nothing to do and you are sick so you sleep in your bed all day and get no physical workout, and your muscles that you worked hard on and were pretty proud of, disappear because you’re doing nothing. It’s hard sometimes to even walk. I have bad asthma, back pain, and just tiredness from the Churg Strauss that I’m battling. Transitioning to real life is very challenging, you have to gain all that muscle back or else it turns into dead fat. And let me tell you that fat makes it worse. You really have to try to push yourself because going to school is really hard when you are so out of shape. It also doesn’t help with meeting girls either. Girls like guys who have lots of action because then they have lots of muscle. I don’t think words impress them very much. Once you gain your muscle back, everything becomes a lot easier in all parts of life, including girls.

Anyways.. Being in the hospital is not ideal obviously. When things get really bad, I quietly ask Jesus”Why me?” and “why would you make me sick if you love me?” Well, I know being sick or struggling in life does raise a lot of questions and it can make you question your faith and relationship with God. But honestly, That’s not fair for you or God. You are beating yourself up, not trusting God, and start questioning everything. Thinking things like,”I thought you love me”. It is not God making you sick, it is satan just being evil and sin. Struggles make you question your faith with God. Satan is trying to get you onto the “Dark side”. We need to instead turn to Jesus and know He’s looking out for you.

Whenever I’m in the hospital, I know I will be okay, I do not have to worry because God is on my side rooting me on. God has a plan for me, and regardless if you do not like the plan at the time, It will be the best thing for you. God’s plan is better than everyone in the world’s plan combined for themselves.

I know all of your loved ones, friends, doctors etc may be worried and scared about you, but I never have to be worried even if it’s septic shock or me on my death bed, because God has a plan for me and I completely trust in him with my life. I know regardless if Ilike his plan at the time in the long run, It’s by far the best plan because its Gods plan for me 😉

Thank you for reading my post Comment below and tell me your thoughts on

it.. Even if you don’t like it, tell me your opinion. Like i said, I’d 

rather people tell me I just downright suck than lie and tell me I’m good!

“I don’t want to be like those people that go on american idol and say

My mom told me I’m good! so i’m not gonna listen to you professional 

judges my mom knows more!” 

I just don’t want to be one of those people =)

Thank you for reading! 

God bless and stay tuned!

 

First singing video

​This is a video of my doctor and I singing together.  Dr Bloom is amazing!  I’d love to know your opinions.  I can take it.  The end of this is my favorite part.

Being small in a big World

Since i was born I’ve been very tiny due to my disease “Russel Silver Syndrome” (R.S.S) I was 3 lbs. I’ve always been really small. There was never a time when i was average, or close to the height of a kid my age. In fact I was always teased due to my height. By the time I had embarked into my first year of school all of my classmates, or really anyone around me would tease me because I was so small, and developmentally I was slow. 

 People around me gave me the nickname “Baby”. Now I’m not sure if they just gave me that nickname because i was just really gorgeous, or just tiny. Considering i had “Russel Silver Syndrome” (R.S.S) I had assumed it was because i was so small. Even though I liked thinking it was because I was a babe, and thinking girls were just flirting with me. Unfortunately It was because I was about a foot smaller than everyone else And possibly because i had developmenta, educational, and social issues which resulted most likely by my stroke. I was very socially awkward. That was always a big problem also up until I was early into my eighteenth year.

 I broke out of my shell a lot in the last year, and am pretty friendly and the opposite. People used to try as hard as they could to get me to talk but now they can’t get me to be quiet at times. In fact up until i was in first grade Nobody knew i could talk at all. When i was in first grade I was getting picked up from school, and a classmate screamed “BABY CAN TALK!!” I was still super shy even past that I would only talk to people I’ve known for a long time. Which made it hard to make friends. Although I did have one amazing friend and still do named Mom.

 Anyways I had a lot of developmental, and educational slowness there-for I had a Para in school. If you don’t know what a Para is. It is a personal Educational helper who would also help you with your developmental problems and help you overcome them. Sort of like an assistant teacher who works with kids personally rather than in a big group. Due to my stroke i had to learn to walk and talk again so she would help me with speech and talking sort of. 

About my proportional dwarfism. It was not very fun going through school being as short as I was. You would get bullied, teased, and mocked due to everybody being so much taller than me. I don’t remember a whole lot of my elementary school years So, I will jump into my middle school years. Middle school is not ideal especially when you’re short. I got bullied quite a bit in middle school because of my height both physically and mentally. For an example, There was this one time i was in the boys locker room about to get ready to swim when a boy grabs me by the neck and was practically strangling me. I then told my mom and they made me and him go to the principals office and explain what happened. I told the principle I was just minding my own business not even talking to the other boys when he just decides to put his hands around my neck and was basically strangling me for about fifteen seconds. I had told him what happened and the boy says “I was just playing” That was his excuse. It’s not like we were friends and he was literally playing with me, he just wanted attention and a laugh from his friends at the time. This generation “playing” to kids is trying to get attention or a laugh from friends in an attempt to “Look cool” at the moment. From another kid in particular I was pushed, pinched, and verbally bullied by a different bully. I actually had a lot of bullies in middle school which You’d never expect would come from such a school. It was the school on the campus of National Jewish Hospital. You would think they would be more cautious about this topic. The staff, and the students. The staff should know better considering there’s so much in the media about bullying cases , and kids with chronic illnesses seem to be the target of bullying. So, You’d think they would be more aware, and enforce more often. I was always too short, and too skinny to retaliate and fight back. Even if I did I’d get beaten up if I did because i was so small, therefore not as strong as my opressor. 

 Being small in high school was definitely terrible because people at that age start growing a lot. Although i was not bullied in High school, I have gotten a lot of rude short comments and people saying “There’s no way you’re in high school.” I try not to let those comments get to me, but its kind of difficult to ignore. Being short definitely makes you less confidant and makes you think less of yourself and makes you feel insecure. 

 Being short is not ideal, but you can’t let people get to you and make you less confident. In the long run, Height does not matter It’s your personality that makes you, You! God made you special and you need to remember, our differences are what makes us special. We need to be confident that we are incredibly made. We can do anything if we just put our minds to it a believe in ourselves. 

 Thank you for reading this blog post. Leave a comment I’d love your advice on this post! Thank you for your support! If you liked my blog, Tell your friends and lets educate people on problems like these, and my diseases! Stay tuned for my next post and take care! 😉