Invincible with Crohn's.

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Nov 9

Unending Waves / Part 1

The waves of broad daylight from the sun peek their way through my eyelids every morning, faithfully awakening me from my nightmares. My habit was always reaching over my tired, weary left arm to feel the warmth of your skin, your steady breathing and your lively soul resting on my bed with me. I still have that habit, but now all I feel is the cold sheets unoccupied by any living soul. Then reality slowly pours into my mind like the hot drinks we’d share in the morning. I can’t bare to lift these sheets off my lifeless body and dress myself as if today a miracle will happen, but I remember how it felt getting ready for my days and having you to come back to, something about those memories sparks a feeling in my heart telling me hope isn’t lost, hope isn’t lost. Lost. That’s the only word I knew how to say for months. I didn’t know myself whether I was literally lost, or I lost something, or something lost me. I felt as if this planet were but an atom in a maze of the universe, and mere consciousness was playing a cruel joke on me. Sleep was all I could ever accomplish. Some nights, sleep was my enemy. And other nights, I heard a ticking. I thought I really had lost IT, my brain had enough and gave up but the ticking happened… every night, on your side of the bed, a ticking. Is it your heart calling out to me? I wondered. I had not looked or ventured to your side of my…our bed in so long, but I needed to know, for curiosity was the only feeling my body knew anymore. My knees buckled underneath me, I laid my hands on the floor, I closed my eyes and put my ear to the ground and listened. Tick tick tick. The sound was calming, in a way. It was as if I was listening to your heartbeat again. I gently grabbed the floorboard, lifted it and saw a kindly wrapped piece of cloth around a circular object. The ticking wasn’t you, it wasn’t your heartbeat, it wasn’t your heart calling out for me. No. It was a compass. I touched it and cried although I can’t tell you why I cried, but I discovered something that didn’t make me feel so… lost. And that’s how I got here to where I am. I no longer wake up and feel lost, I know my purpose and I’m on this journey to accomplish it. I do wish it was your heartbeat sometimes instead of this compass directing me, I miss hearing it, miss feeling it and I miss having it. But my heart is locked away safe where I know it won’t be hurt anymore and I’ll be seeing you soon.

What made you smile today?
For me, it was knowing my brother & sister were beside my hospital bed when I woke up from surgery. Feeling comforted goes a long way.
So whatever made you smile today, share it with someone. Make your smile contagious. They might just need it too.

What made you smile today?
For me, it was knowing my brother & sister were beside my hospital bed when I woke up from surgery. Feeling comforted goes a long way.
So whatever made you smile today, share it with someone. Make your smile contagious. They might just need it too.

I have an undying love.. and disease!

I had my tenth Remicide treatment today. I don’t know why I still bother with it… I can’t keep food down, I’m basically confined to Gatorade and crackers. I’m exhausted from it, but my body is shaking too much to let me sleep. Right now I’d rather be dealing with my Crohn’s pain than the Remicide side effects!! Oh well, there goes another day without posting an informative blog entry. Tomorrow hopefully. For now, I’ll go back to listening to my iPod and counting the imaginary sheep above my hospital bed.

Crohnie Ellie

Ten years strong.♥

Ten years strong.

No guts, no glory.

Where to start?! My story begins at age 7.

I come from a huge and diverse family. 3 brothers, 2 sisters and 2 step-brothers. And with a huge family, comes huge family stress… my mother was a lawyer & father was an off-shore oil driller, so financially we should have been fine. But debt constantly weighed down my parents from being financially content, which rubbed off on me and my siblings. My father worked in rotation on the Gulf of Mexico for the company Nabors for 22 years. He was only home for 6 months out of the year (28 days home, 28 days in Mexico working, so on, so forth). Only seeing your dad every 28 days was hard, especially since that leaves only one parent to look after you and your siblings. My mother, on the other hand, is a completely different and f*cked up story. I’ll say this though: She’s the reason I developed Crohn’s. Without going into too much detail - My childhood was straight out of a horror novel. Thus leading to my painful, time-consuming, confusing IBD diagnosis.

The first time I ever felt Crohn’s side effects..
I was about 7 1/2, it was summer, I spent days indoors because I was getting sick more often than normal. Any doctor I went to just said it was stress, “get some rest, you’ll be fine!” Wrong, I won’t be fine. Then it happened. One night I had eaten 2 bars of chocolate, which normally wouldn’t bother my stomach. But I immediately vomited violently until I was sweating and shaking and fainted for a few minutes. Then came the diarrhea… I don’t need to explain that though. I guess I could say that the contents of my stomach & intestines were empty, so why was my stomach hurting so bad? I was bent over in pain and didn’t know whether to cry, scream, throw up or sit down. I basically camped out on my bathroom floor the whole night until I woke up a few hours later screaming in pain and crying. My parents had to take me to the children’s hospital, but I could hardly get in the car because my body had paralyzed itself in the fetal position (if I moved, it hurt worse). Once all the tests by the nurses were run and examinations by doctors were done, they came to the conclusion that it was Lactose Intolerance. But I knew something wasn’t right. The pain in my stomach was too severe for it to be simple allergies to milk contents. But that night, my body showed the doctors they were wrong.. a nurse had helped me stand up to go to the bathroom when she noticed a puddle (a huge puddle) of blood on my bed. Yup, that’s right, my intestines were literally bleeding out, which only means one thing! Crohn’s Disease. 

From that night on, I spent a month in the hospital. I spent the next year and a half being fed through a nasogastric tube. I lost 15 lbs at age 7, which resulted in me basically turning to skin and bones. I had my first Colostomy surgery done at age 9.

Socially dormant.
I had to be homeschooled from the end of elementary to the end of junior high. I made a few friends from being in soccer camp, even though I told myself I never wanted anyone knowing about my Crohn’s disease (and the horrible bag attached to my stomach). But unfortunately, the nasogastric tube coming out from my nose gave it away. Some kids accepted it and wanted me to explain Crohn’s Disease to them, and other kids laughed and called me names and pushed me in the dirt. I was becoming more like my dad, spending half a year in hospitals, and half a year at home. As soon as I recovered from my colostomy surgery, I volunteered in the hospital I stayed at. I’d make finger puppets and little bracelets that I’d sell to the nurses to give to the sick children, and I’d put the money away in a jar that I labeled “Money to Find my Cure.” I never got more than 40 bucks, but it made me hopeful. At age 10 I joined a volunteering group that focused on children with Inflammatory Bowel Disease. We would travel in groups to different hospitals to visit other children with diseases like ours, and talk to their parents about what their children are experiencing. I met many beautiful, strong, encouraging children with debilitating illnesses who died shortly after I met them. I still pray that they had enough time with their family to experience what love is. I stayed in that volunteering group as long as I could.

High school was hard, and different. I tried hiding my Crohn’s but I was thinner than other girls, always pale or yellow and always tired looking, so hiding the fact that I was sick was out of the question. Besides, the outline of my Ostomy bag through my clothes was evident. But I finally got a break in December 2008 when I had my Ostomy Reversal. FINALLY, no more bag hanging from my stomach!! I was in remission for a few months till it hit me again. Then I developed Bradycardia. Asthma. Lactose Intolerance (for real, this time). Severe allergies to certain foods. Depression. Anxiety. And, finally, good ol’ Crohn’s. Now here I am, 19, in university, with my Ostomy bag on again, surrounded by supportive friends and trying to lead a successful life. Yes, it’s difficult. And sometimes the pain is as bad as the first time I felt it. But others have it worse out there… confined to a hospital bed and only breathing because of a machine attached to their lungs, wires coming out of their body, practically hopeless.

I’m lucky I’ve made it this far; that’s why through this blog I’ll speak for my fellow Crohnies who have NO voice, who can’t speak for themselves and tell their story. People think it’s weird we have to wear a bag on our stomach, well maybe if they’re more educated on what our bodies are going through, they’ll stop making jokes and pointing at us like we’re an exhibit at a zoo. And through this blog, I’ll be the support that my fellow Crohnies don’t have. Cause with Crohn’s, we’re beautiful, and we’re stronger than others. "No Guts, no Glory" ! ♥