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. 💚💙
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.
As a little girl, I struggled with always my legs. I remember going to countless doctors appointments and being told at all of them, that I had short achillies tendons. I was a toe walker. I could never keep up with the other kids and when I tried to, it cost me a lot of pain. I was given orthotics and put in casts even though I told my parents and the doctors that they weren’t helping. Doctors wanted me to have achilles tendon lengthening surgeries, but at that time there was a 50/50 chance that I would lose my ability to walk. My parents decided against the surgeries in hopes that I would grow out of it. Entering into my teen years, I just made do with life as I knew it. I was able to rock high heels because they were easy to wear being a toe walker. I steered clear from doing activities that I couldn’t do even though I wanted to: dance, cheer, sports, etc.
I married young and had my first daughter on my 18th birthday via c-section in 2003. The surgery was a shock to my body and it took me awhile to recover. I recovered and enjoyed being a stay-at-home mommy. All I ever wanted to be in life was a mom! I seemed to have pain in my c-section scar and in my abdomen so my obgyn decided to go in and see what was wrong. In 2005, I had an exploratory abdominal surgery. Apparently, I had endometriosis and a cyst on my ovary. My doctor put a mesh barrier over the endometriosis and drained my cyst. “I was good to go.” In 2006, I gave birth to my 2nd daughter and for whatever reason, I healed quickly. However, in 2007 I once again began to have abdominal pain so my doctor decided to go back in and check it out. He removed a cyst on my ovary and some built up scar tissue and sent me on my way. Unfortunately the pain didn’t end, so in November 2008 I went back under the knife to receive a partial hysterectomy. My obgyn took the ovary that was causing pain & he took the lining from my uterus to keep me from having periods. The day after my surgery I began to get sick. Really sick. I threw up & ran fever for 18 hours. Once I threw up blood, my husband rushed me to the hospital under my doctors orders. I only remember bits and pieces of that hospital stay. There were several different kinds of doctors over me and they ran every test known to man. After a couple of days of tests, my infectious disease doctor told me that I was going through septic shock. After a few more days, I received a picc line & was sent home to finish recovery. I had to give myself antibiotics intravenously for two weeks and received visits from a home health nurse. I eventually recovered. Little did I know, going through septic shock would follow me to this day. I get infections very easily and have to be careful. I also started noticing that I was losing strength in my core muscles. I shrugged it off thinking it was from having two c-sections. Going uphill or upstairs became increasingly difficult. In 2010, my I began to have foot pain so I went to a podiatrist. He instantly said that I needed surgery to lengthen my achilles tendons. I was terrified of the thought of ANOTHER surgery, so I left. I made an appointment for a second opinion. At my second opinion, the podiatrist agreed that I did need my achilles tendons lengthened and mislead me by telling me that this would fix my leg issues. He told me that I would be able to have the life that I have always wanted and that I could actually be a runner! I was nervous about the surgeries, but excited at the thought of a “normal” life so I agreed. I had my first lengthening in July 2010 and the second in December 2010. For the first time, I could stand with my feet at a 90° angle. I was hopeful! I went to physical therapy until I felt like it was becoming a waste of money. Shortly after my foot surgeries, I became unstable. I fell often and drop foot began to set in. Going uphill or up any step was impossible without a rail. What use to be difficult for me to do, was even more difficult to do. We cursed my foot doctor and I just went about life walking worse than I did before my foot surgeries. I was miserable so I decided to go to a different podiatrist who was a colleague of my last one, but he seemed to be more helpful. He confided to me that he believed his colleague had missed a step in my first initial diagnosis. He seemed confident that I had Charcot-Marie-Tooth Disease & sent me to a neurologist for testing. The neurologist told me that I had Carpal Tunnel and Peripheral Neuropathy. She did not think that I had Charcot-Marie-Tooth Disease. My podiatrist was stumped! He had me try vigorous physical therapy thinking that I could gain my strength back. The first time I went to physical therapy I realized that my calf muscles had atrophied. Physical Therapy was pure torture to me! I went back to my podiatrist and told him that I refuse to go through that sort of pain because I knew that it wasn’t helping and I felt like it was causing my condition to get worse. He agreed and didn’t have anything else to offer me. So once again, I went on with life the best way I could. I worked for four and a half years and this past year I felt my body take a turn for the worse. Getting up from a seated position was difficult, walking and balancing became a chore & climbing a step or going uphill was exhausting. A stressful job became unbearable, so I quit. I knew that something was wrong. Really wrong! Not knowing what to do, I went back to my podiatrist. He agreed that my condition had worsened and was going to send me to talk to someone about getting leg braces. (The expensive braces were an absolute joke!) He told me again that his colleague had droped the ball on me and shouldn’t have performed my surgeries. He also wanted me to go to another neurologist for a second opinion. He gave me a number to call and set up an appointment. When I try to call that doctor wasn’t taking any new patients and I became frustrated. Something inside me told me I needed to find answers on my own. I research neurologist in my area and found one that seemed to specialize in neuropathy and myopathy. I called and made an appointment with her and the wait was 3 months! During that waiting period, I began to search high and for diseases and people that I could relate to. I knew deep down that I had some form of muscular dystrophy even though the thought of that seemed crazy. People are born with muscular dystrophy right? And they’re diagnosed at a young age right? So it seemed a little far-fetched, but regardless I seem to fit in the category of Charcot-Marie-Tooth Disease or Limb Girdle Muscular Dystrophy. When I went to my new neurologist for my emg ( electromyography) & ncv (nerve conduction study) tests, my new neurologist was amazed. She told me that I was fascinating and that this was not a nerve issue, it was definitely a muscle disease. She also told me that having my tendon lengthening surgeries took my calf muscles and balance from me. She sent me to her director of neurology for a muscle biopsy and genetic testing. I was told that the muscle biopsy was no big deal and that it was not painful. Unfortunately that was not the case. Even though I was numbed, I felt every part of the procedure to some extent. The Director of Neurology was fast & thorough. I went home and recovered on pain medication and antibiotics to prevent infection. But the antibiotics weren’t strong enough and my wound became infected. (Which was normal for me thanks to me going through septic shock years prior) So a week later I returned to the Director of Neurology. He gave me stronger antibiotics and had some of my test results available from my biopsy. He told me that I had a form of Muscular Dystrophy called Limb-Girdle. While I was there he went ahead and took blood for my genetic testing. He told me that he believes that I have the subtype 2A, but wouldn’t be positive until the genetic testing results came in. His demeanor towards me changed. He was a nice man, but became more consoling. Oddly enough I was excited! I finally found what was wrong with me and it had a name. I have Limb Girdle Muscular Dystrophy.