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! =)

 

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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! 😉

First blog post

My name is Avery Becker.

I would like to start by explaining why i decided to make a blog. I love to write, and also sing and would like to possibly someday turn my little singing hobby into a little more I guess. I would also like to just show the world what i can do.  I think sometimes people don’t think they can learn anything from a kid like me, I’m going to prove them wrong.

 

I will now explain the story of my life.

I am a 19 year old male i live in Colorado. The reason i decided to make this blog is because i have a lot of time on my hands because I’m “sick” alot and I would like to

just have something that i am proud of and I want to share my world with people. Even if my viewers do not always like what i post i guess i just would like something to be proud of or brag about haha.

I’ve always loved to write since i was in middle school. I would like to think of myself as a good writer.. Even if its not true.

i just thought if i create a blog i could have something to show someone.  I will now tell the story of my life in short.

I’m not exactly the “Average” American. I basically grew up in the Hospital. It all started at birth.  Basically i was born with something called Russell silver syndrome.  It’s a form of dwarfism, but you are proportionate.  I have a lot of stomach and intestinal issues which they told me was pseudo obstruction, and I have one more i will get to later.

I was diagnosed with these  diseases when i was around 2-3 years old. What it means is I have an extra amount of eosinophils. When you have too many they attack your nerves and just cause a lot of problems (I would not recommend it).

 

When i was 4 years old I was on TPN, which is  basically nutrients and fat infused intravenously, so I have a central line.  That’s an Iv that is placed through your chest and it goes into your heart.  That’s how I eat now.  We did this because whenever i would eat, I would throw up.  I would get nauseous because i have motility and stomach problems and I would also drink all the time and then get really sick, so the doctors decided to just stop letting me drink and just decided TPN would hydrate me and give me what I need.  When I was younger I was really tiny because of the Russel-Silver Syndrome. I was always called “Baby” in school because i was the size of a baby and my classmates looked like they could be my parents next to me [And because i was and still am really cute].  I was really quiet in school and no one thought I could talk either because I was so painfully shy.  They called that selective mutism.  I sure have a lot of diagnosis.

I was approximately 18 bs when i was four. Always tiny. Anyways, Due to me being on tpn and me being so small, I think all the sugar i had in TPN and due to the doctors not checking my blood sugars while on the TPN, I had a Massive Stroke.

At that point after i had the stroke, the Doctors thought i would not live.  They had told my parents that I probably wouldn’t live past 4, but after the stroke it was even scarier for my parents because it was happening. Even if i did live after the stroke they said I may never walk or talk again and I would have to learn everything over again.

‘But a miracle happened. God was with me every moment even if the doctors were didn’t believe in me, God did.. There was one point after the stroke my pastor and parents were praying that i would be okay and at the end, I said “Amen”.  My mom said that was the first word of my new life.  My life of starting over.  I think that could be why i am alive today.  God wasn’t done with me yet.  He had more planned for me.

Jesus gave me the strength to keep fighting, and prove the doctors wrong. And i did. I obviously wasn’t cured or I wouldn’t be sitting here in the hospital right now, but God gave me back my life so i was just happy i got a second chance.  I did learn to walk and talk and I proved the doctors wrong.

I’ve had countless surgeries and procedures.  I honestly  could not possibly count. I’ve had a few nissans and a lot of stomach surgeries etc..

I’ve been going to the hospital on at least a weekly basis if not daily when I’m out of here.  This has been going on for almost for 19 years. The last two or three years of my life I’ve been outpatient for probably 5 months at most. I also get ulcers a lot they come and go. Not too long i was then diagnosed with Churg Strauss syndrome (C.S.S) It’s a very rare disease. It mostly affects older people around 50-70. I am obviously not that old…. yet..:-)

It affects very few people so they call it rare and for a kid, its super rare so doctors don’t know what to do about it most of the time.  They have to find specialists to help them out.  someone told me there are about 40 kids  in the world who have CSS.

I just have countless things going on and it would take me forever to explain everything. So, I’ll just tell you what i do know and what has happened recently. Churg Strauss is an auto immune disease.  Which means unlike most people, i have too strong of an immune  system, and since it has nothing to do it attacks my organs.  It attacks my lungs and my stomach and my intestines.  Because of this they give me meds to knock out my immune system.  They use chemo drugs and now I’m on a really experimental drug so I don’t have an immune system at all. So it is very easy for me to catch things. After i had the stroke when I was 4 it caused me to have seizures. I have had them off and on for probably 15 years.

Anyways,  the reason i made this blog is because i would just like to share my story and like I said,  I guess have something to show that i am proud of in my life.  That maybe I could help someone else and help people to understand.  I’ve always loved writing and recently started singing and learned I really like that too. I spent a lot of time in the hospital with my music therapist they taught me a lot about singing, but I have a lot more to learn. I love singing now and love making new songs.

A big portion of my blog will be about the songs I’ve written, and you may see a lot of singing.

So, tell me your honest opinion about my writing or singing in the comments. Even if you think i suck that is fine.. Just means i have room to improve. I don’t want to be like those people who go on “American Idol” and say “My mom and friends told me I am a good singer”  So i would much rather you tell me i suck if its true rather than saying I’m great.

Don’t be afraid to hurt my feelings:-) I will be posting lyrics of my songs I wrote, and a video of me singing them.

 

Stay tuned and comment how you liked this post on my blog it would be very much appreciated 

 

 

 

 

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