Being positive has always been a struggle for me. Naturally, I am a cynical and scarcastic person but this brews alot of unwanted stress, anger and resentment. So, when I meditate everyday, the mantras and centering thoughts provided by Deepak and Oprah all have a common theme of being mindful, positive and letting go of things that prevent you from being the best version of yourself. I have always understood the importance and the healing benefits but only recently have I tried to be more positive everyday. I noticed that on the days that I practiced this simple change my day seemed better and at the end of the day I felt happier. Meditation teaches acceptance is a vital part of happiness and your overall health. Once you accept something or someone as they truly are then and only then can the universe rebalance. I know it sounds crazy but in recent situations in my life I have tried this technique and the results have been very positive. This has allowed me to build my positivity silo higher than it has been before. This quote best summerizes the lack of value holding a grudge has in your life and your ability to be positive. “Holding on to anger is like drinking poison and expecting the other person to die.”― Gautama Buddha I will step down off my soapbox now but being truly positive is something that needs to be worked on daily. I have just noticed that I am reaping the rewards of what I am sewing when it comes to my relationships, friendships and even with my acquaintances. Being positive and letting go of any grudges, anger or resentment toward people, circumstances or otherwise is the best thing I have done for myself. I will leave you with this quote “Find a place inside where there’s joy, and the joy will burn out the pain” -Joseph Campbell
About a year ago, I decided to try meditation after watching a few episodes of Oprah’s Super Soul Sunday. My interest was peaked when her guests all talked about being mindful or mindfulness in general. According to Psychology Today, “Mindfulness is a state of active, open attention on the present. When you’re mindful, you observe your thoughts and feelings from a distance, without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.” Oprah and Deepak Chopra were offering a free 21 day meditation experience called “Manifesting True Success.” Like most people I was skeptical about meditation so I decided there was no harm in trying something new. On the day the first meditation began, I pulled out my dusty yoga mat and laid down with a pillow under my head and pressed play on the app on my iPad. It was a guided meditation meaning Oprah and Deepak talked what todays mediation will be about. This lasts about five minutes of the 20 minute session. In addition, Deepak gives you a Mantra which according to google is “a word or sound repeated to aid concentration in meditation” and a centering thought which relates to the days meditation. Once you begin the meditation, Deepak asks you to focus on your breath to calm yourself and try to clear your mind of all thoughts. If you get distracted he asks you to repeat that days mantra. Sounds simple right? It is not. I found out very quickly why they call meditation a practice because like anything else it requires repetition to improve. I completed my first meditation and I felt accomplished but not the calm I hoped for but I figured there must be a reason they require you to do a 21 days so I continued. The next day I woke up again and tried again. Each day I felt the difference in me. I was calmer and more mindful of the experiences and people in my day. People told me that something was different about me. I was always a person that was a bit on edge but the more I continued my practice the better I felt. Also, I notice that I felt less stressed, I did not get upset as easily and I was living in the moment more. When I completed the 21 day meditation experience I felt like a new person and now I meditate daily and twice a day if I have time. I know what you are thinking, how could I spend 20 minutes a day meditating when I do not have a minute of free time? I suggest you start with a few minutes a day or just a few minutes being mindful of what is around in nature or at home. I know many people including Oprah say that they do not listen to the Radio when driving instead they use that time to be mindful. There is no wrong way to mediate so as long as you a take a few minutes a day to be mindful you are doing it right. Namaste!
It all started when I was 8 years old, I was changing grades going from 2nd to 3rd grade which in my school was on the second floor. So, I had to climb up the stairs to get to the 3rd grade level classrooms. Prior to this, all the classroom for my grade level were held on the 1st floor. This is when a teacher noticed that I was having trouble going up the stairs and informed my parents. This began the journey to find out why I was having trouble going up and down the stairs, participating in gym class and keeping pace with the kids on the playground during recess. First, I met with an orthopedic doctor, he was very well versed in neurologically diseases and stated that it may be one of three diseases: Muscular Dystrophy, Charcot Marie Tooth or Guillain-Barré syndrome. The summer that followed my 3rd grade school year was spent being tested for all types of diseases. The tests that were administered were the following; I had a MRI, X Rays, A Gate Analysis and EMG. After obtaining the results from all the tests, it was determined that I had Scoliosis or a S curvature in my spine and Guillain-Barré syndrome which is similar to Charcot Marie Tooth but not the same. Guillain-Barré syndrome or GBS is similar to the Flu and causes some of the same damage as CMT however unlike CMT, GBS is not a degenerative disease meaning it does not worsen over time. So, I began the living my life thinking I had GBS. I have always been a curious child and so I began to reading and researching about GBS but I felt never that my issues match with GBS but I ignored my feelings of doubt and thinking that maybe my version of GBS may be different then the typical version of GBS.
So, 25 years had passed before I started noticing a dramatic change in my energy levels, ability to work and my ability to do normal daily tasks. I started to have injuries, pains and problems doing things that I could always do. So, I visited my doctor again and he said I should see a neurologist. So, I did and I was asked to have the same tests that I took as a child but this time the results came back different and my diagnosis was Charcot Marie Tooth which is a hereditary sensor motor neuropathy. I was shocked but not surprised because I always felt that GBS did not fit the issues that I was having. So I was misdiagnosed for almost 25 years, I lived my life not know that I had a completely different disease. After reading about Charcot Marie Tooth and how it presented itself in daily life, I was almost sure this was what I had all my life. I was so upset because I had so many bad days and so many issues that could have been explained and treated by having the right diagnosis. The next step was to find out more information about Charcot Marie Tooth so I joined the Charcot Marie Tooth Association or CMTA. Also, I decided to became a volunteer as a Co Branch Leader of the Chicago North Branch. This was one of the best decisions I have ever made. The CMTA help me find the resources I needed to better understand and support my CMT. Also, CMTA is dedicated to find new research, treatments and information for all the different types of CMT. Although, I had all of this new information and the best resources form the CMAT I was still not convinced 100% that I had CMT. So, as a branch leader at CMTA, we try to bring in speakers to our meetings to help our members be better informed, so last year I brought in Julie Hedrick of GeneDX who explained the benefits to genetic testing. I know what you are thinking that genetic testing is very expensive and you are right but Julie and the team at GeneDX helped through the process of get the generic testing done with my insurance. After a few months, my doctor received the results and it was confirmed that I have Charcot Marie Tooth Type 4c. According to Charcot Marie Tooth Association, CMT4c is caused by mutations in SH3TC2 and has a wide variability of severity. This type of CMT involves childhood onset of sensory and motor neuropathy in the lower limbs and high arched or flat feet. Patients often have mild difficulty with walking, and some may need a wheelchair. Scoliosis is almost always present, usually onset in the first two decades. The onset of neuropathy symptoms range, some beginning in the first decade of life, and others do not onset until adulthood. Lower limb and upper limb weakness is common, beginning towards the hands and feet and sometimes extending above the elbows and knees. Hearing loss, vocal cord involvement, and facial paresis have been reported. This is a demyelinating form of CMT, with conductions usually ranging between 16 and 36 m/s in the arms.
I am a firm believer that if something does not feel or seem correct always question it. For years, I felt that my diagnosis did not fit me but I just accepted it because maybe I was misinformed, in denial, or possibly just putting a bandaid on the real issues that I was having but please use this as an example to find out the right diagnosis for yourself and get the help you need and the obtain the right treatments for your disease. Lastly, I would like to mention that Charcot Marie Tooth is a hereditary disease so it is not contagious so you cannot obtain CMT by sharing food or drinks, sitting next to or being intimate with a person with CMT.
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[Post Originally Posted On CMTA USA Facebook Page]