You grew up going to hospitals. Not because you had appointments, but because I did. So you began to hate hospitals and going to them. But that hasn’t stopped you from visiting me when I’m in the hospital. Every single hospitalization you’ve come to visit me. To put your arms around me and give me a hug. To distract me for a precious few hours, hours that always seemed to pass too fast. Thank you for bringing sunshine into my hospital room. For taking my mind off of what was going on around me.
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But what made her reminder even more poignant was that she had the courage to make a joke about something serious. That’s just one of the reasons I love Eric Emanuelson. She is one of my only friends who has the courage to joke around with me about my medical equipment, diagnoses, and medications.
Minus the outbreaks mentioned above a lot of us internalize our feelings. We pretend we are fine when in reality it feels like our insides are falling apart. We try to push through the pain, the nausea, the dizziness or whatever other symptom we’re experiencing. We try to be brave and put on a good face for the rest of humanity, but on the inside the struggle is so very real. So we need you to come alongside us and ask us how we’re really doing. Don’t just accept okay or good because odds are we probably aren’t okay.
Living with a chronic disease and fighting for my survival has made me grasp how precious life is and that time is better spent making memories than collecting things. I love each and every memory I’ve made with my family and good friends. And plenty of memories are made around the holidays as the holidays have a tendency to bring people together. I have also seen how fleeting a life can be and how quickly someone can die; through a car wreck, disease or other type of accident. So cherish each and every moment you have with those you love because you never know when your last moment may be.
My hope is placed in Jesus, not in the doctors. Therefore I am not disappointed when a doctor has no answer for me, because if my hope is in Jesus then I can’t be disappointed. Instead I trust that He knows exactly what’s happening so I have no need to worry.
Born with a chronic gastrointestinal (stomach) disease I was constantly fighting a daily battle to keep my spirits up and not succumb to the thoughts and emotions that always threatened to overwhelm me. Texting was like a lifeline for me. It made me realize I wasn’t alone and there were people out there who loved and cared for me.
As I've progressed through this disease I've come to learn many different things, things that no one told me to expect. Things that have shocked me and shaken me to my core, but through all these things I've grown stronger as a person and that is the reason I am who I am now. So I thought I'd take a minute and share some of things with you, in case you too are struggling with a chronic disease, so that you can use the information to better your life.
After I received the G-J tube I spent about a month in the hospital. I was released, but returned a week later for dehydration. The next stay also lasted a month. I was out of the hospital for about four months and was then readmitted that January. When I was released the first week of February I thought my hospital stays were over, but sadly I was once again admitted about a week later. As I mentioned above I was heart broken and didn't want to see another hospital room, but I reluctantly agreed to the admission.
When I go to a cash register to check out I watch as the cashier’s eyes stayed glued to my chest instead of my face as I try to talk to them. I try to ignore the stares. I try to pretend that they aren’t staring openly at me. I try to act normal, but it’s hard. Sometimes I just want to blurt out, it’s called a port and it’s keeping me alive. If you have any questions please ask them, but please just stop staring at me and acting weird or embarrassed about it.
Many ask if it was possible for me to be born without my disease would I chose that? My response may surprise you, but I would say no. I've prayed for many years that God could use the bad of my disease to bring good to others and I have begun to see that being played out. If I hadn't suffered first I would never understand someone else's suffering to the extent I do. There are countless lives I never would have had the opportunity to touch if I didn't have my disease.