I haven’t posted a blog in a long time because I was going through a deep depression. It was difficult trying to seem normal on the outside and wanting to curl up and disappear on the inside. But something just hit me one day (or maybe my medication was kicking in…lol) and I realized that eventhough I have had a life changing turn of events this past year, I still have a husband whom adores me and loves me despite my body changing and even when he has to come home to a sick wife every day. I have two beautiful daughters who think I am the coolest and silliest mom ever. They think I am better than all the other moms in the world. I have a family who would do anything to find a cure for me if they could and who support me all the way. So for me, going to my dark depression isn’t an option anymore. It’s not fair to the people that I love and care about more than anything in this world. I know my triggers that set me into a funk, so I just make a choice. I can be even more miserable than my disease already allows or I can fight. Fight to give what good is left of me to the ones who matter. I want to try different things and see places I have never seen before and make memories. Some of the best memories are made in the comfort of my home with my family. I’m not saying I am not going to still go through a rollercoaster of emotions. It’s a given having Limb Girdle Muscular Dystrophy 2J. I’m just not going to let the negative emotions move in. I am a fighter and always have been. So as Rare Disease Awareness Day passes me by, I know that I am ready to be strong again and set an example for others.
One of the hardest things that I have encountered being diagnosed with Limb Girdle Muscular Dystrophy 2J is how rapidly my body has lost mobility. It is extremely painful, not to mention difficult to walk, bend over, stand up from a seated position, stand for a length of time and the list goes on. I became frustrated the more helpless I became. I hated asking for help and I am impatient. When I want/need something done around the house, I want it done quickly & my way. So it was either wait on someone else to do a task for me or figure out how to accomplish it myself! I found some “tools” that are really helpful & I am really excited to gain a little bit of my independence back!
This steam mop has been one of the best investments I have made in a long time. It leaves my floors sanitized and clean without a lot of hassle. No cleaners are needed at all. Just add water, plug it in and push it around. It use to be hard on my muscles to constantly ring out a mop or switch mop water. This is so easy to use and it honestly leaves my floors cleaner than when I use to use regular mops or even the ready mops. No slipper grime or residue left behind. It’s simple and clean!
My next purchase was a dust pan with a handle. It is extremely hard for me to bend over and then stand up right because I have lost strength in my core and back muscles. So when I got this dust pan, I was excited because I would be able to sweep without having any issues! My daughters thought I was a little too over excited, but my husband thought it was a neat trick!
This is my most used cleaning tool! I constantly drop things and my daughters tend to leave things laying around. This Grip’n Grab helps me pick up without having to bend over. I made sure to get a grabber with great reviews and a wire cable vs a string. This is a super helpful tool to help me around the house!
My next purchase is going to be a laundry basket with wheels. I will update this post when I select the one that works best for me!
Limb Girdle Muscular Dystrophy 2J may take away many things that are out of my control, but I will fight to keep my independence as long as I can! I am constantly facing new obstacles, but I am determined to figure out a way around them. I just have to make adjustments to my new way of life. I hope this post helps others facing similar struggles!
It’s been a long past couple of weeks. I can feel my body giving up. I struggle in doing any little task. The pain is never ending. It’s scary that my disease has progressed furiously. I refuse to sink, but I just want to rest for a few weeks with nothing to do. My neurologist put me on some new medication and it helps, but brings concerning side effects. I wish there was a quick fix for relief, but there isn’t. I can see the fear in my kids and husband’s eyes when they see me struggle. I carry guilt eventhough I know that having LGMD2J is beyond my control. I pray, but have doubts on whether or not I am doing it right. I need a miracle, but am I worthy of receiving one? What will life be like for me in a year from now? Will I be able to walk? I can barely stand up from a seated position. It has become increasingly difficult to stand up. I sat on the floor to care for my daughters sick pig while everyone was out and it took me 8 minutes to get up from the floor. 4 of those minutes I sobbed with frustration. I fall easily and fear that I am going to break a bone. The thought of that seems bittersweet. I’d have down time, but it would bring additional pain and burden my family even more. We spent the week at our county fair and I sat there watching people walk carelessly. They didn’t have to focus on the ground and worry about falling. They were able to bebop to wherever they wanted to go. They were having fun. I sat there and watched them enviously. I wanted to be able to walk around with my husband and visit with our friends. I wanted to walk with my daughters and enjoy the sights. But I sat there and watched others living life while I am a prisoner in my body. My mind wants to live life, but my body is too tired. I hate to have a pitty party, but today I am. I will try to be stronger tomorrow.
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.