Hello my dear friend,
It has been quite a long time since I wrote last. I hope this letter finds you well. Much has happened in the time that has passed; too much in fact to include in this letter, but I am so glad that through the ups and downs I found my way back to you. Writing for me is therapeutic. It is a way for me to connect with people as well as process the jumbled up emotions on my inside. I'm sorry that I stopped writing for a while. My heart was broken and I couldn't find the words. You see, this blog was used against me in a court of law. Can you believe it? I couldn't. I began this blog as a way to help people and myself. I needed inspiration after my diagnosis and during my struggle with Crohn's Disease and Esophageal Dysmotility. I wanted to stay positive and keep trying to live a "normal" life. My doctors and therapist suggested that I write and blog as a form of encouragement for myself and others. But when I filed for disability the judge used this and every good part of my life against me. Because I was too positive and continued to try to stay healthy and happy, I was not sick enough. It didn't matter how much I was suffering or what abilities I had lost, it wasn't enough. My positive way of living in this case turned out to be not so positive...a negative in fact. As a result I lost my hope and my positive outlook on life. I tried to fake it every day and wear a mask, but inside I was dying. My health started to decline after that: my infusions started taking a tole on my body and my little organs started to fail. My liver enzymes started to rise, my thyroid stopped producing it's essential hormones, I was losing my hair, and my reproductive system failed and a hysterectomy was needed. I also lost a few people that I loved the most. My weight started to rise and my spirits lowered. I was lost. After a few come to Jesus moments and deep conversations with my husband, I realized that the path I was going down was not a good one and that I had to get off the train. So I went to work....not at a place of employment, but on myself. I took a deep look inside and found the pieces that were broken and began the hard process of healing. I started going to a program called Celebrate Recovery and worked through a ten step healing program. I learned about unconditional and conditional love and how to love others and myself. I also wrote a book and published a children's book. It has been a very hard process, but it is good. I don't want to have Crohn's Disease anymore and I don't want to have to do Remicade Infusions either, but this is my life today. This is where I am at. I have to make the best of every day,, good or bad, and find the joy that God has given us. I met a new doctor yesterday. He is young compared to my last IBD Gastroenterologists. He listened and asked questions and for the first time asked me what I wanted to do. Five years of seeing GI Specialists and he was the first one who asked me my opinion of my Disease and where my life was at. It was a freeing conversation and through eyes brimming with tears, I explained how hard the Remicade is on my body and more than anything, how hard it is on my mind - my spirit. He heard me. He said my physical reactions to Remicade are severe and concerning. He said let's see if we can do something about it. Let's see if we can make it better. We are going to begin testing to see where I am at with my inflammation levels and what my Disease state is and see if we can go down another road...the one less traveled. One where we can let body take care of itself. One without chemotherapy or harsh drugs. Is it risky? Yes. We are talking life or death. My body could fail and the Crohn's Disease could flare up again and kill my insides. But what if it didn't? What if it is okay? This Friday is our first step in the testing. We will test to see if my body is building antibodies against the Remicade. I also have my infusion Friday too so we increased the dose of pre-infusion steroids to see if that will help with the side effects. Wish me luck! Now I'm off to frost cupcakes for my Hubby's birthday. He is a bit antsy this morning and ready to get this day started. I am too to tell you the truth. Today is going to be a good day. The sun is not shining outside today, but it is in my heart. Sending you much love my friend. Until next time, Danielle
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AuthorHi there! Welcome to Grace In A Glass. My name is Danielle and I am so happy that you are visiting this site today. We all have something in life that we are working to overcome. I began blogging about my struggle with overcoming Esophageal Dysmotility and Crohn's Disease with the hope of reaching others with words of encouragement and hope. Thank you for letting me share my stories with you, and hope you have the most wonderful day! Archives
November 2022
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