I stumbled across my old blog and as I read my posts from 2017, my heart felt for the person who had written them. She was scared, hopeless, and seemed defeated. Yet she still had fight in her! I am that girl. I am a fighter! I felt lost when I was first diagnosed with Limb Girdle Muscular Dystrophy 2J. I felt alone and as though nobody truly understood me. Since then I have met many friends with similar diagnoses, all over the world thanks to the internet. My family has been my biggest support system. I have found out who my true friends are. Over time, I learned to choose happiness. Choose hope. Choose to live! I don’t waste my time on negativity. My body continues to grow weaker and yet, I still fight EVERY day. My diagnosis does not define me. My story is not over. I love the life that I live. I adapt to new changes constantly, and I just roll with it. It can be frustrating when my mind and body don’t sync together, but all I can do is focus on the positive. My family has enough on their plate with my inconveniencing disease; they don’t need me to act all doomy and gloomy! I intend on blogging on a regular basis. If nobody reads it, that’s ok. I will be able to look back over the years and read my own story!
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.
I was offered a temporary receptionist job that I gratefully took to help out with finances since I am still waiting for my disability to be approved. I was concerned whether or not I was going to be able to successfully complete all of the administrative tasks that were going to be asked of me, but I was excited at the thought of trying to work again!
The first day was eye-opening to me. All the little tasks such as filing, standing to make multiple copies,taking staples out of documents, stapling documents, writing and walking from office to office were insanely difficult for me to do. Bending down to file papers was extremely difficult because I had to pull myself up afterwards. I prayed that nobody watched me as I figured out how to pull myself into an upright position. By the time I was done with my first day I was exhausted and in more pain than I normally am. I went home and rested in my bed until we had to go to my daughters 4H meeting. I push myself to physically get into the car and go to the meeting. When everyone stood to say the Pledge, I stayed seated for the first time in my life. I physically couldn’t get up. I felt guilty because saying the Pledge is something I take pride in. But I knew that it was too much for me to get up. When the meeting was over I tried to stand up and failed at my first attempt so I sat down and acted as if I needed to get something out of my purse. Then I situated myself and a way that I knew that I would be able to get up and I did successfully, but I looked awkward. I went home and crashed without having to take a sleeping pill.
On my second day of work I was in pain but decided to push through it. Day 2 was the same kind of work and I was walking like an unbalanced toddler. The pain was unreal and getting worse. After getting through my work day, I decided to come home and clean up a little bit and make dinner. I wanted to have one evening where we didn’t discuss my pain or my disease. I wanted one “normal” night! After pushing myself to clean up and make dinner, all I could do was go lay down. My body was done! The pain was so overwhelming that I just sat there and cried big tears! I usually try to hide my tears from my husband and my children, but there was no hiding these tears on this night. My husband was beside himself and didn’t know what to do or how to help me. That night I must have only gotten a combined 4 hours of sleep. No pain medicine was touching my pain and my body was completely exhausted. I couldn’t help but think that everything that I did the past 2 days was not even that strenuous and yet my body felt as if I had been hit by a truck. Unfortunately I had to let my employer know that I wouldn’t be able to come back to work because it was too much for my body. She was extremely understanding and I was disappointed that I had to leave a job that I actually enjoyed. For whatever reason my disease is spiraling out of control. I have made an appointment with my neurologist to try to figure out some sort of pain management. I am hopeful that she can help me obtain some sort of quality of life! Because right now I am not living, I’m merely surviving!
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. 💚💙