Every day is a struggle, but I try to focus on what makes me want to fight my disease. My children, my husband, my family & friends. When I was first diagnosed with Limb Girdle Muscular Dystrophy, I told myself that I would fight, I would advocate to others, I would rise above my debilitating disease and be an inspiration to others. I was successful in doing this until my pain decided to move in and unpack! It’s absolutely exhausting being in pain constantly. You forget what it’s like to not feel pain. You fake your smiles to make others feel comfortable. Who wants to hear you complain 24/7? The pain makes me feel depleted & I wonder if I will ever get some relief. Today I choose to rise above the pain and try to be happy. It’s not going away anytime soon so I have to figure out how to live with it. Because I want to LIVE! Gonna focus on my faith and family. 💚💙
When I first received my diagnosis of Limb Girdle Muscular Dystrophy, I was elated to actually have answers. I told myself and my family that “I was gonna fight this” & “I am better off than most people with this disease”. I kept my thoughts and words positive and courageous. I wasn’t going to let any negativity seep in. In the back of my mind, I was a little concerned with all of the information on LGMD that I had been reading. It was scary to see some of the stories, but shrugged them off and kept my thoughts positive. I felt like God had given me this disease so that I could help others by becoming an advocate. I want going to let this disease drag me down. I was going to fight like a girl!
One afternoon my daughters and I were straightening up the house. I went to put towels away and when I turned around, I tripped over nothing falling hard to the floor. I landed on the step of my garden tub and the hit rattled my body. I sat there for a moment thinking “So this is what my life is going to be like?” I choked back tears that were fighting to get out. I didn’t want to break. I had been so strong. Then I had to figure out how I was going to get up. You see, my legs barely work, my core muscles are extremely weak and my arms can only be so strong. I decided to get over my ego and call for my daughters to help me, but they couldn’t hear me. That’s when the flood gates opened. I sat there on my bathroom floor and cried. I cried for myself, I cried for my family having to go through this monstrous disease with me & I cried because of the excruciating pain I felt from the fall. I let it out and then dried my tears and figured out how to get up. When I walked into my bedroom, my youngest daughter, Lola, saw me and asked what was wrong and I told her that I fell. She asked me if I was okay and the tears started to fall again. Lola stood there and hugged me. I shrugged off my tears and apologized for crying and then continued on with my task. Then my oldest daughter, Kassidy, caught wind of what happened and came in to see if I was okay. I told her the story and then tried to laugh it off. She grew angry at me and when I asked why she was upset with me, she told me that it wasn’t funny. I make jokes about my disease and it’s not funny. She said that I had every right to cry and if I wanted to cry every day that it was okay. I stood there looking at her puzzled by her anger and then I told her that I had to laugh and make jokes because I couldn’t stay unhappy forever. I told her that we had to acknowledge our frustrations and move on to the positive things in our life. As I told her this, I realized that I was miserable inside. This disease seemed to be more of a curse than a blessing. My heart breaks for my family who have to adjust to our constantly changing lifestyle. But this was just a bad day & there will be more of them. So I just have to focus on the good days because those are the ones that are going to help get me through this.