Just Believe: Part 8

SET BACKS IN MY JOURNEY.

I have experienced some very low points throughout my battle with kidney failure. I felt like giving up once because it seemed like every time I was closer to getting a kidney transplant, some other new problem would pop up unexpectedly, thereby pushing back my progress. I have lost 5 chances of receiving a kidney because of this.

At one point I found out I was anorexic; I lost 60 lbs in 2 months. I started getting more and more depressed because of my condition so I would work out like a maniac. The only problem with that was that I was burning fuel without replacing it. I would look in the mirror and tell myself I had to stay at a certain weight; so I stopped eating like before only to make my parents and doctors worry more.

Then another time my weight totally went crazy when I was prescribed steroids that were supposed to help stop the bleeding in my lungs. It got to where I hated my whole look and I avoided looking in any mirror because all I saw staring back at me was this ugly, bloated, blow fish character.

My weight issues have messed with me so much that I had to go see a counselor for help. Thankfully, my weight has returned to normal.  I still watch everything I eat and sometimes I feel as if I should lose some weight.

Then there were the terrible mood swings and anxiety attacks I’ve endured. In order to treat the depression that stems from all of my health problems and treatments, the docs prescribed me pills to help me maintain a balanced mood. Well it got so bad at times; I felt like a ticking time bomb on some days, any little thing would cause me to explode just like an unpredictable volcano. I’m sure I was no fun to be around.

I became a human yo-yo and I hated it. So in order to deal with all of this I decided to change my whole image. I lost all the weight and  I tried to boost my ego with tattoos and piercings; I got as many of them as I could believing they would make me feel better about myself, but of course they didn’t because all that is superficial. The inside of me, my spirit man needed healing and no tattoo or piercing was going to heal THAT.

Just Believe:Part7

I have been living with kidney failure since I was diagnosed with it when I was 14 years old. As I look back , this has put a strain on some of my relationships, especially the ones with my siblings. Being sick all the time has forced my parents to always be focusing on me and I know this made Tony, Amanda and Daniel feel less loved by them and more resentful towards me. At times this has put our love to the ultimate test.

When you’re a kid you don’t see life from the perspective that an adult has. You think you are the center of the universe and everything revolves around you. I have to be honest, at times I did use my illness as a way to get out of doing chores around the house that were my responsibility. I knew my siblings were onto me every time I got by with it and now I hate that I put them through that.

I know now that my parents never favored me; I’m quite sure that if it had been Tony, Amanda or Daniel who was sick instead of me,  they would have done the same for them as they’ve done for me. When I was younger, at first the extra attention was great, but now I’ve grown to despise it because I know everything can’t be about me and when you’re sick, everyone doting on you and constantly worrying gets old at times.

                                                                           

Sometimes I wish I could roll back the clock hands and go back to before all this started. I look at my family and I see that they are as tired of this as me. I’m a pretty basic guy and all I ask for at times is to have a single day when none of us are anxious about any of this and we can all kick back and live one normal day without worries about what lays ahead for me tomorrow.

We’re all grown up now; I moved out of my mom’s house and I live with Daniel in an apartment we share. He still looks out for me just like when we were back home. My sister Amanda always stops in to check on me too. Life is not cured; you learn to manage it or it’ll manage you. I believe I can speak for all of us that we’ve learned, by God‘s grace to manage my living with kidney failure and still find time to love, laugh and live.

Just Believe: Part5

TO MY PARENTS

 

My parents have always been here for me as I live out my journey with kidney failure; I get strength from both my mom and dad who were always by my bed every time I have been hospitalized. They would get upset when I would play “forbidden” games such as football and basketball and the tube in my chest would fall out; I knew they were telling me not to only because they love me and were looking out for me. They didn’t want to see me go through more than what I was already going through. At times my mom has been strong for both my dad and I.

There was a time when my dad was terribly ill too and we both ended up in the hospital. There my mom was taking care of both of us; running back and forth between our hospital rooms and still having to take care of my other siblings at home and making sure that they did what they were supposed to. I have often marveled at my mother, wondering how she can be so strong for all of us. She is like an immovable tower; a light house with a one beacon of light that steers all the incoming ships safely into the harbour. My mom has held our whole family together during the storms and she’s guided all of us to safety. I believe in guardian angels because I live with one everyday and her name is Sharon-I thank God for my mom everyday.

On days when I’m feeling really sick, especially after dialysis or lately, chemotherapy; I don’t like to wear it on my sleeve. I try to be strong for my family because I know it hurts them to see me struggling. So I put on my tough guy face for them. There are times though, that I have to let my wall down because I can’t take it anymore and so I go to my mom; she’s the only one I tell just how bad it really is for me. I have this one wish: I long to take care of my mom like she does me.

I have been living with kidney failure for 7 years, now and I’m 21; My mom still comes to every doctor’s appointment with me and if I have to stay in the hospital, she still never leaves my side. Manny- my dad tries his best too. Back when we were all younger, he would take turns with my mom, staying at the hospital with me while my mom went home to take care of the rest of us and vice versa. Even though his health is not the best, he does as much as he is able to for us and I thank God for him too.

 

There was a time when I was really hurt by my dad’s drinking; it came to the point where I couldn’t stand to be around him. His behavior was hurting all of us and I resented him for not being there for me as much as I needed him. I wanted to yell at him and tell him to man up and do his part so my mom didn’t have to always be taking care of all the kids by herself. But that’s all water under th.e bridge now because I have learned to forgive him; he’s just like me, we both make mistakes and mercy has taught me to be merciful with him. Now I’m closer to him than when this whole crisis blind-sided my whole family. If you’re parents are still around, thank them for all they’ve done for you and if they have made mistakes forgive them and let them off the hook because after all, they are only human like all of us.

 

Coming up next, I will tell you about some of the close calls JR has had with death…

 

Eva Santiago Copyright 2011

Just Believe: Part4

 

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HOLDING ON

 

I remember a time when the doctors put a chest tube in me; they had given me the option of inserting a tube in my arm for dialysis or I could opt out and have the tube in my chest. Well I didn’t want it to go in my arm because I was more concerned with how it would look. So I told them to put it in my chest. That was the wrong choice alright! I learned later that if the tube were to slip out, it could get infected, and I didn’t need any more problems to add to my plate which was already piled to the ceiling.

 

I began to play sports and do everything I wasn’t supposed to. If I played contact sports there was always the chance of that tube slipping out, but I didn’t care what the doctors said. I was rebelling against all of their warnings and it felt good for a change because I felt like I could have some say. And of course as you may have already guessed, the darned tube would slip out; but guess what? Not once did I get an infection like they had predicted. So I took that as a sign that someone way bigger than me was looking out for me: GOD! I believe He wanted me to have some kind of enjoyment in my life as I learned to live with kidney failure.

 

 One day,the chest tube which  was inserted in between my ribs, was letting me be aware of its intruding presence in my body and I couldn’t stand the pain. I cried tears I didn’t know I had. My parents took me to get some x-rays done at the hospital and I couldn’t hide my tears. My oldest brother, Tony tried to cheer me up,

“Hey, don’t go crying like that. See that hot nurse over there? I could of sworn I saw her looking your way. If  she sees you crying like that she’s gonna think you’re lame.”  I paused for a minute as I took in what Tony said, that made me stop thinking about my torture and I was able to laugh a little. But all too soon the pain over came me and I could not control it. That night the doctors decided to take out the tube for good and from that time on, I’ve had the tube in my arm.

 

I was discovering God had my back and because of HIM I was making it from one day to the next. Because of HIM I was holding on!

 

 

On my next post I will tell you how JR has relied on his mom-Sharon to help him through some of the toughest times he has had to face…

 

Eva Santiago Copyright 2011

 

 

Just Believe: Part2

I am a starting a series of blogs which will be a personal story shared by my friend JR Rendon.

 

LIVING WITH KIDNEY FAILUR

 

My whole world was turned upside down on me when I was diagnosed with kidney failure at age 14. My family and I were residing in San Bernadino, California and I was just a young kid barely getting to understand what life was all about. There are times in your life when crisis hits you and you realize that you’re not the only one being affected by the chaos surrounding you; your loved ones are also going through it with you. I look back now and I can see who has really been there for me and has stuck it out with me through thick and thin: My family has been my rock through this whole journey. My dad-Manny, My mom-Sharon and my siblings-Tony, Amanda and Daniel. I want to take the time and thank them for all the support they’ve given me. When tragedy hits some families, they fall apart. My family has seen the ups and down of my illness for 7 years and even though  we’ve struggled, we are still strong and I can attribute this to God who has helped all of us to hang in there for each other.

 

Once I was diagnosed with kidney failure the next logical step was the treatment I had to undergo. Let me tell you everything in me resisted going there. I was  a bundle of emotions at first: Anger, sadness, fear, bitterness, resentment and loneliness all became my constant tormentors and companions. My life as I knew it was gone now.

 

The first day I went for my treatment is still strong in my mind. I had to go to the hospital with my parents by my side; even though I knew they were there for me, fear was overwhelming me; I shook inside and nobody could see it. The nurses hooked my body up to equipment that was foreign to me then; I was poked in so many places by so many needles that I just stopped counting each time it happened. Test after test kept coming and I thought I was back in school because I grew anxious wondering if I’d be able to pass all these tests. Everything went smoothly that first day right up until the end though; that’s when I had horrible cramps that felt like a giant hand was squeezing the very life out of me. Then profuse sweating came and I felt like a cooked bird in the oven. And I couldn’t even breathe right; ‘So this is why my mom told me never to put my head in a plastic bag!’ I thought. I had enough of it when the non-stop vomiting began; I think I emptied out pretty much all my insides that day.

 

In my next blog I will share how JR soon began to view this illness as a prison…

 

Just Believe (My Life Story) Part One

I met JR Rendon back at my old neighborhood and we’ve been friends ever since. He is a young man struggling with kidney failure since he was 14 years old. When I published AS CLEAR AS CLAIRE, I gave him a copy of my book. A short time later I ran into him and he asked me to help him tell his story. You never know how your single act of obedience will be used to inspire and even unlock someone else. Recently JR came to my home and he shared the details of his experience with me; afterwards I took his notes along with mine and used them to build the story. With his permission I am posting it here because it is his wish that people read it in order to be helped. Thank you JR for allowing me this honor!

 

 JUST BELIEVE

We all have issues; you have a choice in how to overcome them. God has given all of us the gift of choice. In Genesis He tell us: “ I have set before you life and death; blessing and curse. Choose life that you and your children may live. Well, I want to share with you how I was choosing death for a long time and I was getting nowhere.

 

It all started for me when I was 14 and I realized I had no control over some of the problems in my life. I was fine one day and the next day something unexpected happened: I found out I was sick. It happened on a Friday when I visited my family doctor for a regular check up. Dr. Felter did his normal routine with me and asked me how I was . I joked that I wished I were taller and he told me not to worry because being tall was over rated. We both laughed because he happened to be only a little taller than me. Before I left his office he did order some blood work to be done for me and after he took some samples I was free to go.

 

I went home that afternoon feeling pretty good about my life. Once I got home I called Erik and Victor and told them to meet me at the skate park. I was going to pound all of my pent up energy into my board and forget all about the hassles of the past week. That whole week end I spent with my family; we hung out and had a huge cook out in our back yard. Some of my family came from Cali and it was fun to be with my cousins again. I had no

idea what was coming to me.

 

Monday rolled around as usual with the speed of a lightning bolt. Dr. Felter called my mom and I saw her face change in a flash; her smile disappeared from her small face only to be replaced by deep furrowed lines of worry on her forehead. That concerned me . Once she hung up with Dr. Felter, she told me,

“ Junior, hurry up and put some clothes on.”

“ Mom, I’m tired I was gonna go skate …” she interrupted me,

“ C’mon we have to go NOW!” I didn’t say another word and did as she said. On the ride in our white family sedan my thoughts were racing as in a Nascar speed track ; all my thoughts were crashing into each other and I felt loco.

 

Once we arrived at the hospital we went to emergency and they did all the routine work on me. They asked me for a urine sample and then gave me a bed to rest in because I was in for a long wait. Finally after what seemed forever and a day a young doctor with a heavy Russian accent came in to speak to us. I read his name tag: Dr. Malkov and I tried hard to listen to what he was saying.. He told my mom that there was blood in my urine sample . I looked from my mom to the doctor and I panicked because the looks on both of their faces was not a good one. Shortly afterwards I was transferred to Sun Valley hospital where they specialize in helping people with kidney failure.

 

I was starting to feel like a specimen on a petri dish from all of the blood tests, x-rays, biopsies and cat scans I had to endure. And, after all the results came back, my tormentors my doctors could not figure out why I was so sick and growing sicker . I was admitted into the hospital and kept under close observation for the next three weeks. When my sentence expired, I was released and the doctors still had no idea as to what was wrong . I felt pretty good as I made my way home that day.

 

I had not been home for long when my condition took a turn for the worst. All the food I ate, I would vomit and as if I needed any more cause for concern, I started spitting up blood. Great, I had made it out of that blasted hospital for almost a whole week and my mom had to rush me back before I even had a chance to go skating again with Erik and Victor. Once at the hospital I began vomiting blood; so I was hooked up to an IV and the doctors tending to me began administering medications in order to stop the bleeding and the vomiting. Meanwhile x-rays were ordered for me and once the results returned they showed blood in my lungs. I had to stay for more observation in the ER for 2 nights.

 

After the two days I was transported to another hospital where the doctors ordered lung and kidney biopsies for me. Once the results returned, the experts informed us that they had found scar tissue in my lungs from all the bleeding. At this time I learned I had kidney failure and that I would have to undergo dialysis and meanwhile I would be placed on a waiting list for a kidney transplant.

 

I was dumbstruck along with my parents; I felt fear running through me as never before- a chill would course through my veins that not even the hot sun in this scorching desert I call home could dispel. My parents, Sharon and Manny both shared my fear and that day I remember crying my eyes out. Man, I didn’t know I had THAT many tears and still they wouldn’t stop coming.

 

At this point in my journey I began to feel a strong anger toward God. I would think; ’Really, God? Why me? I hated that I was having to miss so much school. Soon it became tougher to keep up; I went from being a some what out going kid at school to someone who decided to completely shy away from people. I missed so many days that on the weeks when I did go to school I would show up only to feel judged and snubbed by the other kids. So I decided to put an a coat of armor as self protection. I was so sick of everything and everybody and I put on my best tough ass look that I could muster as a way to cope with all of this misfortune.

 

Before I discovered about my sickness I would put up with all of the mean teasing from bullies at school; and believe me that was no picnic but at least I believed in myself enough to just shrug off the stupid hurtful words. Now though, things were different and I felt my patience ebbing low and I got to where I wanted to beat the next person who called me “Big Eyes” to a bloody pulp. Prior to the illness, I had been able to talk to just about anyone who tried to friend me. Now I had become quite shy and I tried to stay away from people so they would not talk to me. I remember hanging my head low a lot and the bad attitude I wore now was what I thought was giving me the strength to get by each day; I was so wrong but back then I didn’t know it. My bad attitude toward everything was hurting me more than I could ever imagine.

 

I began dialysis right away; I had lost a lot of weight and my nice brown skin was now sallow and pale. I hated looking at myself in the mirror. I had to go to dialysis 3 times per week and each session lasted 3 and ½ hours.

 

7 years have passed since this illness came into my life. I still go to dialysis and I’m on the waiting list for a kidney. I have since discarded my bad attitude like a cheap coat you throw away in the dumpster because it was dragging me down and impeding my process. I have also stopped asking God, “ Why me?” Now I have more of a clear understanding and I see that none of this is God’s fault. God did not make me sick as I was under the wrong impression before. I blamed God for this and it drove me far away from Him which is not what I wanted at all.

 

God uses everything , good and bad that happens to us for HIS glory. No, He is not getting any glory from my sickness; He IS however getting glory from how I choose to handle this. The choice is mine: Do I trust Him completely no matter how this turns out? Or, Do I keep trying to make sense of it all and try to take care of it myself with out His help? He gets the glory when I allow Him to take care of me because that’s when He shows up and shows off. God loves it when we trust Him even when there is no apparent reason to keep trusting Him. Little did I know that in all of this He was growing my faith by leaps and bounds. Everything works for the good of those who love God and are called according to His purpose.

 

Ask yourself right now; am I willing to TRUST that God is God and that he can and will help me in whatever situation I may be facing? Or, am I going to go on doubting Him and struggling to make it work on my own. All God asks of you is obedience and the rest He takes care of. God is a rewarder of those who diligently seek Him and that takes FAITH my friend.

 

As I look back on these last 7 years I am able to see how God has had my back through this whole ordeal. Once I almost had a heart attack and the next day I got out of my hospital bed and started walking around because I felt good; this surprised all of the doctors. Miracles are real and I believe that God does big and small miracles for us all the time; we have to be in tune though and believe that He is who He says He is.

 

I have come to accept where I am right now in my life. I don’t fight it anymore; my bad attitude had me in the same place the children of Israel were in when they left Egypt. They complained bitterly that God had brought them out to the desert to abandon them; this angered God because they would not trust Him. Without realizing it, their grumbling made a short journey into one that took them the long way through the desert .They reached the promised land 40 years later when they could have gotten there in a week‘s time. Well, I know what they went through personally because of my sour attitude and all of the complaining I did.

 

As I see it now, God was never and has never been out to get me. He chose me, hand picked me even to demonstrate His love and power to and through me. God taught me that just because the doctors give me a bad prognosis, it doesn’t mean I have to live my life in fear. If I TRUST Him, I can over come whatever comes my way. Before when I was letting the sickness rule me, I was miserable because it was in control which drove me to a terrible, unbearable depression. Looking back now out of my fear I was choosing death every single day and I spent my days wallowing and brooding in self pity. We don’t move God with our begging and our tears- FAITH is the only way to get God to move on your behalf. It doesn’t work any other way.

 

So when I stopped playing the self pity woe is me game, that’s when everything changed for me. Hind sight has shown me that I made these past 5 years harder on myself and this held me back from making any progress; my wrong choices made my journey much longer and harder to bear . Blaming God is pointless. I chose this for myself, He had a better plan for me and out of fear, doubt and unbelief I chose wrong. The day I chose to shut my complaining mouth up and I asked God to forgive me for all of my complaining was a pivotal point in my life. Ever since, things have begun to move for me. Everyday that passes by is bringing me closer to my kidney transplant.

 

Faith is the substance of things hoped for and the evidence of things unseen. Without faith it is impossible to please God. Impossible is nothing. Keep trusting and believing. Believe and let live!

 

COPYRIGHT

May 30,2011

WRITTEN BY EVA SANTIAGO BASED ON THE FACTS JR RENDON TOLD