Hope keeps me alive. Not that I felt was going to die in the first place, but it keeps me feeling alive.
When I was first diagnosed with a disease that has no cure, and no reason, I felt nothing.
You have an Inflammatory Bowel Disease. Said the doctor after my colonoscopy.
There isn’t a cure. But we’re going to try to get it into remission with a treatment plan.
Okay. I said. And my mom drove me home.
I was okay when I called my dad and told him the diagnosis. I was okay after my mom left to go to class. I was okay when my boyfriend came home and I told him the news. I was happy. I’ve got this, I thought. It will go away.
Around 4 hours later, I did some googling on what the hell an inflammatory bowel disease was.
There’s a lot of scary information out there when you first start looking. Medication side effect nightmares, surgeries gone wrong, jobs lost, relationships terminated. The darkness seeped into my mind with every click of the mouse. I closed my computer, sat in my room alone, and burst into tears and sobbed and sobbed and sobbed. The world as I had known it had shattered. My boyfriend came in and held me while I cried and told me that everything was going to be okay. I was strong. I was terrified.
The next week, I went to the doctor and started my treatment plan. She was intent on making sure I didn’t get lost in the patient vortex.
You have to take your medications. She said. Don’t skip them. And do your own research and see what has helped others. Look on forums and see what has helped others. Read books and see what has helped others. We don’t know what causes this, and not every treatment works for every person. But we can try to find what works for you.
I dove in. I checked out every single book on the library about inflammatory bowel diseases. There were a total of 2 books.
I googled forums. I stopped drinking alcohol. I stopped drinking caffeine. I instagramed like it was my second job and found an awesome support group of IBD Warriors that became my heroes. I talked to my supportive and wonderful boss. I got on FMLA so I was covered on my bad days. I lost 15 pounds. My hair fell out. I set goals for myself. I refused to let the bad days keep me down for more than was possible. I wrote in my journal. I went gluten-free. I started practicing yoga. It took 2 months, AND I WENT INTO REMISSION.
The blood in the toilet that I had come to refer to as my old friend went away. The bloating and discomfort diminished. I went back to the gastro doctor for my followup and saw a nurse practitioner because my doctor was on maternity leave.
You’ve done so well. She said. You can stop the suppositories.
I was thrilled. No more awkward “Don’t come in the room when the doors closed because I’m taking my medication!” No more fear of pink eye. No more disease. No more explaining myself. No more hair falling out.
About a week later, my old friend came back to visit. And she came back with a vengeance.
I didn’t leave bed for 2 days from exhaustion. I lost 7 pounds in those 2 days. I fell into a state of depression. I failed. My body was still rejecting me.
It was September. I called my gastro office. They didn’t have any appointments available until February.
I called my primary care doctor. He had left the practice and I had to be a new patient with a new doctor. I could get an appointment in three weeks.
Okay. I thought. I’m still able to work. I’m still able to function. I can manage. I can wait.
I started an elimination diet to see if any foods seemed to be a trigger. I continued to take the medication I was still on. I focused as much as a could on myself. I maintained.
I saw my new primary care doctor and told her about my diagnosis and how I had flared up again.
That’s interesting. The doctor said as she opened my gown in front of the nurse like an animal and listened to my heart. That must cause some anxiety.
I’m hoping for a support system I said.
That is important. Was all she said as she walked back out the door. I never went back to her.
In December, the cramping was becoming worse, so I called the gastro for an emergency appointment.
I saw a different physician assistant as my primary doctor was still out.
Prednisone is your only answer. He said, without asking any questions about my history or my symptoms.
I’ve taken prednisone before. I’ve never felt worse in my life. I’m not taking it again. There has to be something else.
There is a new steroid that has minimal side effects. It’s expensive, and it probably won’t work. Your insurance might not cover it.
I’ll try it.
3 weeks later I finally had the approval from my insurance and was able to start the uceris for 8 weeks.
It seemed to help keep my disease from becoming worse. But I never went out of remission. My old friend is still sticking around.
In the middle of this ordeal, my self-esteem took a major blow. The person I saw in the mirror looked sad. Her skin looked shallow. She looked lost and unhappy. Her clothes didn’t compliment her, the hung on her small frame. I didn’t let anyone else see this, except for the boyfriend now and then. To most of the people around me, I was keeping my head held high, I was doing great. I was positive. I had bad days but I was determined. Inside, though, I was full of doubt and fear.
Then one morning, I took myself to the bookstore to look for books on healing. There has to be more to what I’m going through. Something is missing, I thought. I can do more to help myself. And there I found my gift from God. Sitting on one of the shelves as I was walking to the health section was a pink rock in the shape of a heart with the words Hope carved into it.
And so began my journey to find hope everywhere I could. I held on to that rock for the rest of the night, and started reading anything I could get my hands on about healing.
That brings us to now. I’m still flaring. My old friend is still very present. But she’s a part of me now. I have bad days. I have great days. I have days when I still get downright depressed. But this time, I have hope. I have hope in healing. I have hope for a cure. I have hope for everyone battling a chronic illness. I have hope for everyone going through a life battle or facing an obstacle.
The power of a little hope is incredible. I don’t think you have to be religious to have hope (though I always say prayers help too). You just have to have it. And I think it helps to share it. When you share a little hope with someone else, your own hope grows.
My hope looks like a little flame on the tip of a match. Some days it’s a big as a flare in the sky. Some days it stays on that little match. But I always find that it grows bigger when I share it with others. I think it’s important to share it. The more hope that’s shared, the bigger the spark becomes and larger the light it shares. And light always beats out the darkness.
That’s why I chose hope. I’m beating out the darkness and sharing the light. All it takes is a spark to get started.
I hope you’ll follow my stories to see where I’m finding hope each week. It may be a person, nature, a whim, an adventure, or anything. Hope is out there. You just have to look for it.