Reconnecting in a disconnected time

Yesterday, March 5th at my work, Brewability lab, we hosted a book signing for my friend Ben Higgins new book; Alone in plain sight. At that event for the first time, in a long time I felt a powerful sense of connection, hope, and true friendship. A feeling I haven’t experienced in a very long time due to the circumstances we’re in with the covid-19 pandemic. Ironically, this book we were celebrating at the event, ‘Alone in plain sight’ is all about connection and hope. The hope for a better future, as well as what has come through valuable stories, and friendships. If you haven’t checked it out, I HIGHLY recommend it! At the event Ben, Brandon and I were all signing Bens’ book. 

Why were Brandon a I signing Bens’ books? Both of us had a chapter Ben had written in the book about our stories, connection and the impact it had on both Ben, and ourselves. It was a amazing night, not just because the signing was a success, but how impactful it was for myself and the community. For such a long time I and many of the people I know, have felt ostracized from society and cut off from human interaction, resulting in depression, anxiety and just overall unhealthy mental states. As unfortunate as it may be, but also understandable due to the circumstances we’re in, it was just so nice and refreshing. We all felt normal.Yes, we gathered in a safe environment. Everyone was screened, temps checked, we social distanced and masks were worn, but we were together. Friends, and family came out to show so much support and love with one another. Even though the precautions were taken, we could feel normal for a bit. We felt alive and connected.

How my friendship with Ben has impacted my life & taught me to be a better person:

Being friends, and connecting with Ben has been one of the most impactful journeys and friendships of my life. He’s truly taught me to be a better person and what friendship truly means. He took the times to get to know me, to love me for who I am with all of my flaws. I used to be ashamed of my disabilities, and illnesses and never wanted to talk about them or myself. I noticed I  would think I was making friends and people would ask about my life and I’d think I could share a little about my struggles and time spent in hospitals, but then they would quickly change the subject or start talking about themselves, as they were not expecting to hear the ‘bad’ in my life. They just couldn’t relate and it made them really uncomfortable. Yes my illnesses are bad, and unfortunate, but it’s what i go through on a daily basis and is an essential conversation point if you really want to get to know me. I became embarrassed to open up to people, and even was ashamed of what makes me, me. Then i met Ben, we instantly ‘hit it off’and became great friends. He was never afraid of going deep in conversation nor talking about the hardships and struggles of my life, he truly wanted to get know the core of me, and likewise made me want to get to know him and who he really is. He made me completely reevaluate the meaning of friendship. He made me feel comfortable talking about my struggles and I could be vulnerable outside of my family, literally for the first time in my whole life. He really cared about me and wanted to be my friend.

So if you ask me, how my friend has impacted my life and made me a better person?

He has completely redefined friendship. He made me aware of how true friends interact and talk to each other, not through superficial conversations nor telling you what you want to hear. Ben Higgins is not only a great friend of mine, he is a hero in my eyes. Ben has taught me the true meaning of friendship. How to deeply connect with one another, how to love a person for who they are, and most importantly, that it’s ok to be myself. With a real friend I can be unafraid to speak out about my disabilities and struggles, because they make me, me. I am so thankful to have Ben as a friend.

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The job of finding purpose

Today i’ll be talking about the job that has positively impacted my life, and has made me a better person, as well as made me learn so many valueble lessons about myself, others, and just generally essential skills. This job started off known as Pizzability, a pizzeria with the amazing concept of hiring adults with all types of disabilities / abilities, making the world a better place creating job opportunities for said people otherwisemay not have. I’ll start off with a little introduction into my life. I have several chronic illnesses one of that being churg-strauss syndrome (EGPA) and the other russell-silver syndrome, i also had a stroke when i was 4 years old and have some developmental delays / disabilties. Because of all this, I’ve basically spent most of my life in the hospital, limiting my independence aswell as social skills and just overall ability to be a normal person. When i was about 21, my medical conditions seemed somewhat controlled so I thought i’d try getting a job, this would be my first job ever. I know 21 is pretty late to finally get a job due to my circumstance it was as soon as i could. I applied for so many jobs just trying to get my foot in the door, i didn’t care what it entailed i just needed a job because at this point i was very depressed and feeling like my disabilities defined me, and i had no purpose and would never have a normal life. Anyways, I had applied basically at every job opportunity that was in a 5 mile radious from my house and every place i had, all of the places turning me down saying i could not hold a job due to me being in the hospital so often and requiring more leniency than “normal” people.

This all changed one day when i was shopping for a couch for my tiny house in cherry creek, when me and my mom got over to cherry creek, we saw Pizzability, a pizzeria with an amazing concept of hiring the differently abled. Me and my mom went inside, and we asked if we could speak to the boss.The owner came over, very friendly saying “How can i help you?” and i explained my situation saying that I’ve been looking for a job for so long but due to my illnesses, every place has turned me down. She looked at me and said “come behind the counter, lets see if you can pour a beer.” Because bartending was also a big part of the job. The staff at pizzability were giving me tips showing me how to angle the glass when pouring to ensure minimal amounts of foam. I “did a great job” and then she said, which surprised me very much and made me really happy, “When can you start” I looked at Tiffany, the boss and my mom with a big grin on my face, with an amazing feeling of hope in my heart that I hadn’t had in so long “I can start monday” I said, eagerly.

Fast forward a few months I had learned so many amazing skills, from making pizzas, pouring beer, socializing with people, and most importantly understanding to embrace my disabilities and not be ashamed by them. Before i worked here, i was feeling defined by my conditions like i was just an illness and it controlled my life and i had no real purpose even when i tried to talk to people about my struggles, nobody outside of my family wanted to listen, they would just change the subject. This is what made me ashamed of my illnesses and made me feel like i just shouldn’t ever mention it, just keep it to myself because people didn’t care to know or it made them pitty me of feel bad so they just wanted to avoid it all together. Well, at my new job, Pizzability the concept literally revolves around people like me, i had so many people to talk to about my struggles and they could relate and we all just got along so well, I finally found a place where I was accepted. This place was not a job to me, but a family where we understood each other and could talk to one another without avoiding the most important topic, our disabilities, the struggles that yes aren’t ideal and are very unfortunate, but it is a huge part of our lives and makes us who we are. The reason i say “was” is not because i dont work there anymore, i do technically but the business as a whole expanded into a brewery and the location moved into Englewood, CO.After some time, Brewability started off as just a brewery that served craft beer. Eventually they build a kitchen into it and we started serving Pizza and beer and had a much bigger venue which allowed us book all kinds of fun events, such as bingo, live music, yoga and other fun things.This job is one of the best things that could have possibly happened to me, before i was very depressed, feeling hopeless, feeling likea failure who had no purpose and would never really amount to anything because i was confined to these disabiltiies / conditions like i would never really be a normal, independant person. But that was far from the truth I learned through this amazing job yes, i have struggles most don’t have to deal with but that doesn’t make me any less capable, they’re just obstaclesthat try to slow me down and stop me, but once i embraced them and was able to feel comfortable talking about them to people, i realized this is what makes me, me.

A person once told me, “Pain is hard, and sucks but its what you choose to do with it that matters”and it really spoke to me, yes my life has been filled with pain and hardship and sucks for the momment, but in the long run, turns into a very valuable lesson and things i wouldn’t have known about life, and myself if i hadn’t gone through it. Like my favorite bible verse says, “For his anger lasts only a moment, but his favor lasts a lifetime; weeping may stay for the night, but rejoicing comes in the morning” All the pain, and suffering and struggles of illness i’ve gone through had made me the  person I am today and has taught me so much because I perservered through it.

 After a year and a half working at Brewability, which has now been expanded and merged with Pizzability, I am now a Manager and absolutely love working there, and love my coworkers. I now i have the amazing opportunity to teach others valuable skills and giveback to others the amazing gift i have been given.

What do I want you to take away from this blog? That having a job at Brewability, has changed my life for the better and has opened up so many doors, and new opportunities and just made me a better person all together. I have hope, I feel normal, and most importantly, I have a purpose.

The best comes through the worst of situations

I felt inclined to write this post hoping to spread positivity and shed new light on the year of 2020. I know this is a little bit late considering it’s now 2021, but a wise person once told me “Better late than never.”

As we all know, 2020 was a very rough year due to the tragic pandemic known as covid-19, that started spreading in february, 2020. This like all pandemics, came with great hardship, fear and loss. We had to act fast to gain control, and minimize the spread of the virus as much as possible. To do this, businesses had to shutdown, and the world had to go on lockdown for several months. Although it may have been the right move to go on lockdown to ensure minimization of the virus, lots of people such as myself were experiencing great depression due to not being able to socialize with friends and loved ones in real life. Of course we have the internet to socialize, but its just not as engaging, nor personabl. We can no longer hug each other, and truly interact with one another creating or continuing deep connections. Getting to the point i’m trying to get to, 2020 was truly an unfortunate year in which a lot of tragic events took place. However, there was some good that came from it. Yes the event that took place known as covid-19 was terrible and led to a lot of deaths, caused lots of hardship, and caused lots of unanticipated suffering.

“How does it not make 2020 the worst year ever? What good could come from it?” you may be asking, well its kind of a double edged sword kind of question. It’s the perspective you take on it. Glass half full or half empty? I choose to look on the bright side with everything. “How could this possibly have a bright side?” may be your follow up question.

A quote that spoke to me was, “the greatest life lessons, and rewards come through the hardest, or even worst, most painful situations.” So how do we apply this to 2020? Yes, it was very hard and caused lots of calamities, suffering, hardships, and even poverty. But we have learned so much through it. These lessons we otherwise would not have learned. “What are these lessons you may be asking?”

Kindness, and loving our neighbor.

Through this pandemic, we learned to love our neighbor, and help out our community under extreme circumstances . Because of the lockdown, most of us including myself felt very alone, and cut off from the world. But it turned out that was far from the truth. When people were contracting this awful virus, so many people were dropping off food to friends, or even strangers.  People learned what taking care of their neighbor was all about. Individuals were generously paying for peoples mortgages, and other expenses just to ensure decent quality of life, and stability for their fellow members of the community. I also was blessed to experience the amazing generosity of a friend. I had come back positive with covid and was in the hospital. Being one of the first in my community to get and and first at the Childrens hospital, there was quite a bit of chaos as you can imagine. I was pretty much locked away with no contact to anyone other than my mom. No one wanted to come in the room, not even nurses in hazmat suits. We came to the hospital very unprepared. We were so thankful for a family friend who came to the hospital and dropped off food, drinks and necessities. I was blown away by that act of kindness and it really touched me and showed me so much. I realized that though this pandemic is awful and very unfortunate, we can still learn an incredible lesson of how to help out our neighbors to feel less alone and more connected even during a lonely, isolating time.

Awareness / being careful

Staying at home for months at a time has also taught people a bit about what it’s like for people who are disabled or living with illness. Everyone experienced what life is like when you can’t leave your homes and have outside contact. Something we experience a large portion of our lives. During cold and flu season I always have to be more careful than other people. Sometimes choosing to stay home and miss out on life to protect myself from getting sick as the medications I take cause me not to have an immune system that works well. This pandemic also taught us that everybody has their own struggles, some more visible than others. For me, as I mentioned before, I’m immunocompromised so i have to be very careful anywhere i go, wash my hands a lot, am careful where I venture and I am very aware of social distance. I can’t travel anywhere out of the country out of fear of contracting a virus, or infection or my disease flairing up. If i did it could be very dangerous, possibly deadly. I have amazing doctors here that know me well and they know how to take care of me. In a foreign country it would be really bad.

This pandemic of covid-19 has caused healthy  people to experience our world. The have been locked down, having to stay at home and if they do go out socially distance, wash their hands, and wear a mask. It has taught us all a valueable lesson of awareness. Some people need to be more careful than others as they’re more vulnerable. We don’t know the journey and the battles others face each day, as some you may not be able to see. I think COVID has taught people to be careful, regardless whether or not there’s a virus circulating. We need to take care of each other and remember there are people in this world that have invisible illnesses and compromised immune systems like me so we should be extra careful all the time and be mindful of that even when this pandemic is over.

Faith / Self-discovery

Personally, i have grown a lot in my faith through the lockdown and learned to rely on my God and not depend so much on temporary self satisfactions such as going out with my friends, or worrying about money or being “cool”and always looking out for things that will benefit me in this life or make me”successful” or “socially acceptable”. I have really struggled with that. I now realize all of that stuff is only an illusion, and will only fulfill me for the moment but won’t truly last. The only one that will get you through life and will grant you permanent fulfillment is Jesus and his everlasting goodness.

Throughout the lockdown I was always depending on the media to see whats going on and what the experts were saying to do. However, I . realized the only thing that matters is God’s will He knows whats best for us, not the government, media, or any other worldly source.

The lockdown has also taught me a lot about myself i didn’t know before. I was blessed with the opportunity to learn about who i am and what my values, and limits are. I also learned what my strengths are and that I can get through more than I thought. I learned how important community and friendships and family are. I know who I serve and where I’m going. I also know that I’m here for a purpose and God is going to somehow use me and my story to help others.

I’m not trying to downplay all the awful things that have happened through this pandemic at all, but rather I am trying to look at the year with a positive perspective. Yes 2020 was full of tragedy, heartbreak, and even poverty, I’m simply trying to say, don’t label it as a “terrible, disaster year” because what we have gained persevering through it makes it a truly amazing coming of age story that made us all stronger as a community.

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 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 with a doubting tone, “Do you even have a disability, if so what it is?”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! =)