Let go of the need to do more and be more; for today you've done the best you can, and that's enough." ~ Shannon Kaiser
Let go of trying to fit in and be accepted by everyone. Your uniqueness is what makes you outstanding." ~ Shannon Kaiser
Let go of the need to do more and be more; for today you've done the best you can, and that's enough." ~ Shannon Kaiser Let go of trying to fit in and be accepted by everyone. Your uniqueness is what makes you outstanding." ~ Shannon Kaiser Sometimes we don't give ourselves enough credit for who we are and what we have accomplished. Especially if we are dealing with certain events that test our strength. I hope to embrace who I am and accept myself as the person I've become.
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When you loose a part of you, its equivalent to loosing a part of your soul. You find yourself in new territory, a place you never thought you would encounter , a new and frightening place. All you can hope is that you learn your way around, that you learn to cope and mourn the piece of yourself that you lost. That soon you learn to live, breathe and conform to the new self you have become. Learning to love thyself without being whole is a challenge that can be overcome. In the end it doesn't matter who I used to be, what matters is who we are now. Just when I feel I understand people they never fail at surprising me. As I face my battles with the deterioration of my speech, I decide to talk less especially around new people. I am afraid of the judgment, the looks of confusion and pity. But...to my surprise... we judge ourselves more than any one else ever would. I notice that people are accepting creatures. They understand that everyone is not built the same way and we all have our differences. As I learn to leave my personal judgment behind I will continue to embrace and learn from the new people I meet and follow them in their non-judgmental foot steps...or maybe...I am not deteriorating as fast as I seem to think I am. "Love is the absence of judgment" - Dali Lama It has come to my attention that every state offers programs for those with certain ailments a way to find, keep and move from a job. In my state it is called Office of Rehabilitation Services. I am assigned a rehabilitation coach and we have compiled a beautiful resume, I have new AT devices, we are exploring the use of a speech pathologist among other things. Now, not only do I receive financial support, I also am given advice on how to handle certain obstacles. Please research and inquire about this program in your state.
I was also given a medical marijuana license and am very grateful. This holistic medication works wonders for my dystonia. I have done research and continue to do so to better understand how cannabis works and what to look out for. Medical Benefits General Benefits Enjoy! Have a great day So, my doctor asked if I have tried maybe having something in my mouth to distract my tongue and allow for better speaking. I told them no, I have not tried that. So the next day I went to my local gas station and bought a pack of gum, tic tac's and mints. I had a cookout to attend and I was excited to see how this might work. I decided to chew some gum all the way to my friends house. I chewed cheerfully along with the music. I arrived to my friends house hopeful and excited to see how having something in my mouth might help. I greeted my friend with a hug and kiss on the cheek and she asked, "How are you?" I responded, "Great...." The gum almost came out of my mouth. So I had to cover my mouth to stop the gum from falling. (Close call, I told myself) She looked at me puzzled but proceeded to guide me to the back porch. I went around and said hi to my other friends. Each time, the gum would cause an issue. One time, I was able to catch my gum as it was leaving my mouth before it became plastered on my friends face! Another greeting ended with my gum on my shirt, but I didn't give up. I took the gum off my shirt and placed it back in my mouth. Another ended with the gum on my leg. Yet, another with the gum on the sThe reactions were priceless! Some friends laughed hysterically. Others were in shock. Me, and my jolly self acted unfazed and apologized after each greeting. After I did my rounds, I sat down to play cards. My first sentence ended with my gum on the floor of the porch. In unison I heard, "Just give it up already. Don't chew gum! hahaha!" I bowed my head down and belted laughter. When I looked up, someone was removing the gum off their shoe. I can check the gum off my list of things to try. Sometimes it just helps to take a day for yourself and breathe. Take everything in and just appreciate what you have and how lucky you are. Yesterday, I went to a local relaxation center in Rhode Island. I struggle with relaxing and try my best to take at least one day a week to relax and wipe away all those stressors. After seeing an ad in a local magazine I decided to visit a relaxation center that offers many things but, I went to experience their urban sweat services. The urban sweat service allows for one to go and experience all 6 saunas and steam rooms that they offer. I was allotted 2 hours of free time to roam all the rooms. I only have visited saunas at the gym or pool and never ventured out into the sauna world. I was excited to see how this may help me relax and improve my dystonia symptoms. The first room I entered was the himalayan salt grotto sauna room. The salts release negative ions which helps regulate the air that we breathe and contra the positive ions released by all our electronics that we surround ourselves with. These salts help asthma, allergies and any other respiratory issues one may have. Due to my lingual dystonia it becomes very difficult to breath due to the tongue blocking my air flow. But in this room, I was able to lay right on the salts and slip away into a peaceful universe. I came back to reality on several occasions due to my snoring (highly relaxed loud breathing as I would like to say), but I would awake with a chuckle, knowing that in fact I was able to relax and slip away for a while. The other rooms that I entered were the yellow turmeric room, eucalyptus steam room, urban ham man and the ocean relaxation room. Due to the heat, spice and or aromatherapy of these rooms served different purposes to help restore my body and help me get back to balance. I felt relieved when I left the "spa". All I did was venture from room to room and slip away to a place where there was no time or worries. I felt like I had been there forever but denounced to me, I was only there for 2 hours of my day. Stress allows for dystonia symptoms to worsen and can also cause other illnesses if stress is not dealt with properly. In the United States, and living in this generation, it is difficult to notice when one is stressed and it is difficult to take some time to slow down and smell the roses. I highly recommend that we all take time for ourselves and even if you cannot visit a sauna spa center (relaxation center), there are new ways that relaxation can be achieved. Please visit the inspiration page to view some examples. Have a great day! Cody and I are participating in the 4th annual Dogs for Dystonia Virtual Walk. Please help us raise money to help find a cure for dystonia. Click on the link below to donate http://dystonia.donorshops.com/dogs4dystonia-virtual-walk.php As my condition progresses and my speech becomes more and more disoriented and painful; I need to remember that there is a meaning to all this. The article to your left (which I will also add to the inspiration tab) reminds me that there is something that we can do. Even though some people do not understand what I am going through and act as if by me being strong they can dismiss the suffering this condition causes; I can bring about change. I cannot let others affect my well being, my positive outlook. I say this because this past week, I have had to talk less and deal with others disapproval. They seem to deal with me not talking in a negative manner. It's almost as if they believe that by me not speaking I am being disrespectful. "How dare you decide not to attempt to speak," their non-verbal cues tell me. The other day I asked to write instead of trying to speak and I was told to forget it. "Writing or signing is not showing strength, you are weak." But in actuality I feel that by me writing or signing, instead of me speaking, shows that dystonia cannot keep me quiet. There are more ways to communicate then to speak. In my other excerpt I spoke about non-verbal communication as well. Hopefully, as dystonia becomes a part of my life others will learn to accept me as a strong women that will not keep quiet, even if my tongue cannot relay what I need to say. A few days ago I went to see my doctor so that I could give blood to a national database. This blood bank makes my blood available to any doctor who wants to perform tests to help with the advancement of education on dystonia. This being said, my doctor stated that there are no existing advancements in the studies and that there are no existing clinical trials being done for dystonia. Funding and participants are an issue. To see if there are any clinical trials in your area: click on the button below. When searching for dystonia, I did come across a few trials being done. I truly believe that if all of us who have dystonia, join forces, and contribute to science we may be able to find something that helps this rare condition become bearable. We may even find a cause. But for this to happen we need funds, time and people. I don't think anything will be found overnight but over the next few years I do believe if we push, we can find something better than what is being offered. On another note...I went to an acupuncturist in my area today. This was the first time I had ever gotten acupuncture and I was ready for whatever they had to offer. I walked into this community facility with an open mind. The waiting room was very homy and welcoming. As I walked in, I was greeted by the receptionist. She was one of those nervous types that kept on talking but she made me chuckle as she walked me through what to expect on my first visit. I decided to try acupuncture seeing, as though, the dystonia in my hands has progressed. My left middle finger has not been cooperating lately. It has a mind of its own. The pain has increased as well making typing and other activities difficult. My main dystonia is lingual but they did diagnose me with dystonia in my hands and just until about a week ago, I never experienced any serious symptoms. Now that I am done with that tangent, lets proceed to what I experienced at the clinic... As I waited in the lobby, the acupuncturist came out and greeted me. She was in her mid thirties and had a welcoming smile. She was very laid back and wore a blue and white hippie dress. She viewed my paperwork and asked what I would like to accomplish with the session. We talked about how I wanted to minimize the pain and discomfort I was experiencing in my hands, lingual area, back and how I recently developed chronic nausea. She nodded while taking quick notes and advised me to find a chair in one of their 4 rooms and to make myself comfortable. She told me, she would find me in a couple of minutes. As I walked around, all I could see where these recliners. Each one had a different blanket over them in different colors. The first one I spotted was in a large room already with a couple people sitting with their heads back relaxing. I liked that chair because it had a baby blue blanket over it, but I wasn't sure I wanted to share this experience with anyone else, as of yet. I found an empty room and sat in the big recliner. The chair was so comfortable it just sucked me in. The fabric was soft and delicate on my skin. After 2 minutes she came over and had me put my belongings in a little, red, plastic, box. She made sure I was extremely comfortable and made sure I was ready to start the procedure. I was ready. As I closed my eyes, I felt a minuscular pinch in my arm. Then more pinches in my hand, legs and soon I was drifting away. My eyes became very heavy and I felt like relaxation had totally consumed my body. For me it was a very bizarre feeling. I have a tough time relaxing and when I feel forced it sometimes makes me nervous. I kept telling myself that I needed to relax and enjoy the moment. And that is exactly what I did, even though, I would come back to reality once in a while and had to train myself to going back into relaxation mode from time to time. The 45 min session was finally over and the needles were removed. I felt refreshed, able to speak and minimal pain. The pain I was experiencing walking in, before the acupuncture, was severe in my back, hands and lingual area. But that has substantially reduced and six hours later, still feeling great. I do advise that acupuncture is done on a day when sleeping is ok. I took several naps after the session and also lounged around all day. I did hear that everyone has different experiences, but I wanted to share mine of having fatigue. Overall, I recommend acupuncture for those who are stressed, in pain and need to relax. Below is the link to where I went to receive my acupuncture, in case anyone is in the area. :) Also, this week a lot of reflection has been done on my part. I have realized that...... Life becomes almost perfect when you accept yourself the way you are and embrace what life has given you. In doing so, those around you embrace all those things that make you who you are I hope you all can take something away from my day and my thoughts.
Thank you |