S.I.C.K. = Share….Inspire….Change….Knowledge
I recently had a friend ask me to read his new book, The Eagle Has Crashed, and I quickly said yes! Ted has been someone who has been helping me to think outside the box when it comes to the plight of America and politics in general. I respect his opinion deeply and was excited and honored to...
Note: I had posted on FB that I would have a play that I wrote up for today, but I moved it to Friday. I have this deep sense that this post needed to be published today. An urgency if you will. Please accept my apologies for the change. ___________________________ Several months ago, I ran into a brick wall. Many people on Facebook probably were witness to it. The impact shattered me as if I had been physically slapped. I …
For years, I have been told to push and collapse. To be honest, I had never heard of pacing until I started writing about my 4Walls and AView. Pacing was never a concept that was ever put before me. So I have spent every day since December 1992 pushing and collapsing and being applauded by doctors, specialists, professionals, etc. What I understand today, however, is that there comes a time in this illness when pushing is no longer an option …
I cannot even begin to tell you how gloriously exuberant I am today! I have waited for two decades for someone, anyone, to just do something, anything with the CFS and ME mess. And finally, someone – a group of someones – did! If you are not aware yet, on July 20,, 2011, in the Journal for Internal Medicine, an International Consensus Criteria for Myalgic Encephalomyelitis (ME) was published! This is a first step of many more to come but …
If you had asked me a year ago, ten years ago, or even two decades ago if I ever thought that Myalgic Encephalomyelitis (M.E.) would cause me to flee into the dark, I would have responded with a resounding, “No.” Today, I know that I would have been wrong … very wrong. Since January of 2011 I have been adapting to a life void of color. It is one that has now become eerily reminiscent to my beloved hobby: black …
Helen Keller once said, Everything has its wonders, even darkness and silence, and I learn whatever state I may be in, therein to be content. I have been diligently striving for a place of contentment since my accident. I actually can say with all honesty I had it before the accident. However, I can also say that I have not gotten it back since the accident. It’s as if I am standing on a precipice, hanging on with dear life, …
Can you believe it? Becoming VISIBLE 4ME is now in it’s 6th month! This year just seems to be flying by. Susannah holds a special distinction in that she is our first British ME story. I met Susannah several months ago and have become fast friends with her. She has a wonderful heart and spirit. I think you will really enjoy getting to know her through her personal story and testimony. Here is an excertp from her story, I was …
When I was in college (TCC) I had one play that just drove me crazy. I just could not make a connection with it. And of course, wouldn’t you know, I end up being cast in the play several years later! I, eventually, ended up coming to a place where I appreciated Samuel Beckett’s, Waiting for Godot, but it took my having to create a character for my acting role in order for me to get there. A few weeks …
I just wanted to take a quick moment and wish all my readers a HAPPY FOURTH OF JULY! Also, I want to thank our military and Veterans for thier service! Without you all, America would not be the great country that it is! I hope you all have a wonderful weekend, even if it is a quiet one. I will be celebrating with organic hot dogs, organic potato salad and the 4th of July cupcake above. Determined to continue forward, …
[Thanks #1] …. because it affords me mobility, freedom and continued independece.
I recently skim read, Toxic Bedrooms, by Walter Bader which I received for free from LifeKind. They are the company I am planning on buying my organic mattress from. I am currently in the testing phase to make sure that I will not have breathing problems as a result of the organic materials they use. In addition, they have me checking to make sure I can also handle all the products together without breathing issues (you put all the samples …
What is that old saying? A little sugar helps the medicine go down. Do you remember that saying? Well, I thought I would post something as far away as possible to chronic illness, relapses, crashes, pain, eye, head, vocal chords, muscles, isolation, M.E. grief, lost … all of it. I recieved the above photo from my daughter and the above phrase popped into my brain. I smiled and thought, A little sugar … hmmmm … Can you believe she …
So often people see only what they want to see. Other times, they see only what I allow them to see. It is those times when anger, darkness, frustration, and a sense of fuitility overtake me, that I desperately try to hide from the world. It is not a face that I want to put forward. Yet, I think to not show that face occassionaly would be a grave misjustice to myself, those who are sick like I am (especially …
We are now onto our fifth story of this year. I find it amazing as I read each new story, how vastly different they are … and yet … how similar they are. Linda’s story, for me personally, was quite riveting. I was completely taken in the very first time I read it. Here is a excerpt of her unique and captivating story: As I stopped to look around, a “sensation” shot up the left side of my neck, then …
This is my new column. Enjoy! Sometimes in life’s journey, we find ourselves living between two chapters, struggling with not returning to the chapter behind us, yet unsure of how, or when, to move forward and step into the next chapter that lays head of us. This transitional place is often challenging as it is not our normal, and very often forces us out of our comfort zone. For those of us who live with an illness – especially an …
As I lay here in the stillness of the dark, I cock my head slightly to the left, listening to the varied sounds that surround me like my favorite soft, chenille blanket. I strain to hear life speak to me, thankful that it always seems to oblige this new, innate need and repeated request. Sometimes life enters my time in the dark in an intrusive and forceful voice, while at other times spiriting in on the feather-light wing of a …
Well, we made it to the International ME Awareness Day! I can’t believe the first half of the year is just about over! Can you? I wanted to let you know that we have much going on over at Becoming VISIBLE 4ME today! First, our May 2011 Story is from Renee. Renee has much wisdom to offer, has a huge heart, and is not only dealing with ME but is also dealing with Lymes Disease. Can you say, daily challenge? …
May 12 is right around the corner. It is an International Day of Awareness that has become near and dear to my heart as it is the International ME/CFS Day worldwide. This is the illness that I have determinedly and doggedly dealt with for over twenty years. For this year’s celebration, I have decided to no longer continue using the “F” word. For years, I have always had this sense that something was wrong about how Chronic Fatigue Syndrome was …
I finally was able to make it through the MRI with the help of valium. However, it was extremely difficult. I had to have 13 sessions (this is what each part of the MRI is called and they range from 2-4 minutes each) because we discovered the nose band in my mask had metal in it, thus, the first three session had to be redone. By session ten, I was was fighting with everything in me to finish the last …
To My family and Friends, I hope this finds you doing well. I’m writing this letter to ask for your help. As you may or may not know, my health has taken a serious down turn. Since the beginning of the year, I have been in a severe relapse as the result of having Myalgic Encephalomyelitis (ME) and am now spending 20 hours or more a day in bed. I only leave my apartment for doctor appointments and only those …
Note: I am not doing well today so I had not intended to post but then I remembered that I posted this on my Facebook through the note system and that many of you would not be able to read it there. So, I’m going to do a ‘cut and paste’ and then going back to bed! For me, writing helps me to process my daily challenges and sort things out. Today, was no different when a third tooth broke …
My week literally fell apart and I broke. I am noticing so many of us are enduring great challenges with our illness and bodies. Many of us are struggling with enduring. I, too, have been struggling. While I want to share where I am today with you, please don’t hear me ‘preaching’ at you. I just wanted to share what is helping me to hang on, to move forward, and to stay determined. For me, this week, I had a …
As many of my readers know, I have a set of core beliefs, convictions that have undergirded me in my journey with ME. Without them, I am not sure that I would have survived ME for these past two decades. One of those core beliefs is that I have been put on this earth for a reason and for a purpose. I am not here by happenstance, by coincidence, or by accident. I have been brought into this world with …
Wow! We are onto our 3rd ME story! Time sure does fly! This months story is by Gail, author of the blog, MyWorld. Here is an excerpt of her wonderful story. My story about Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) in 2002, back when I was in my early thirties. Following University I worked for eight years as a wilderness educator. For six years I worked for an organization called Outward Bound (in England for a year then …
I had planned to segue into something different today, but the response to my letter was so huge that it just doesn’t feel right to move on yet. First, I want to thank each and every person who took the time to comment and share their perspective and stories on my letter (Tuesday Post). I found myself being taken through a gamut of emotions while reading all of your comments – from understanding, to crying, to embracing, and even to …
Note: This was a difficult post for me to write but one I needed to write. I apologize upfront if I unintentionally offend anyone. That is not my heart. Just to create a deeper understanding. This post is to those who do not have Myalgic Encephalomyelitis (ME). It is from me, but I’m guessing it is something that many who suffer with this illness would also like to say. So, in essence I guess you could say this is a …
I have had several people ask me how I am doing these past few days so I thought I would respond here on my blog. To be honest, I haven’t talked about it because I’m not even sure how to respond. But I will do my best. Lately I have been feeling like I am walking in a maze and I can’t find my way out. No matter what I do … or more appropriately … don’t do, I am …
One of my favorite sports, believe it or not, is boxing. I love to watch boxing matches and have for as long as I can remember. It’s not really about the brutality for me, but it is more about the art. A boxer has to hone his craft in order to become a great boxer. He has to build stamina, learn how to throw a combination of punches, and predict his opponent’s moves; all the while preparing his own counter-moves. …
Before I share something I have been thinking about long and deep lately, I want to be as transparent as possible. This post is my understanding of what I believe is going on in my body in relation to how to better explain the devastating depths of the fatigue I constantly struggle with. I am not a researcher, scientist, or doctor. Having said that, however, I have now lived with this illness for 20+ years and I believe my ME …
Life isn’t Static. Fixed. Determined. It’s flowing. Changing. Evolving. There is always the room for Possibility. Expectancy. Anticipation. Even in as severe a relapse as I now find myself in, there is a power within me that lies in wait because change is always, Possible. Probable. Imminent. I just have to learn to be patient; more patient than this thing that now resides within me called ME. ME is like a ticking Bomb. Waiting. Watching. Lurking in the background. Always …
When I started this blog, I started with the premise that I would share with brutal honesty what ME (CFS) is really like. Today, I thought it important enough to break my self-imposed 5-day withdrawal and shielding to reveal once again the devastation of severe ME. First, from this day forward, I will no longer refer to this illness as Chronic Fatigue Syndrome (CFS). That is an hypocritical joke. This is not fatigue, chronic or otherwise. Second, I am angry. …
I’ve have been spending a lot of time looking out my window at my view as of late. So much so that there have been moments when I find my mind wandering to days long ago: days of a physical ease that I desperately long for. As I allowed my mind to wander through the halls of my memories, I smiled as I watched myself putting on a pair of running shoes and heading out for one of my long …
Today marks the second ME/CFS story being shared onBecoming VISIBLE 4ME by author, Toni Bernhard. Toni is the author of, How to Be Sick, and she has been dealing with the challenges of living with ME/CFS for a long time. As a Buddist, she has learned how to incorporate her faith into her life in order to come to terms with a difficult hand that was dealt her. Here is an excerpt of her story for your perusal. In the …
This Saturday Invisible Awareness dot org will be showcasing another, new story of what living with ME/CFS is like. I’m excited to announce that Toni Bernhard has graciously offered to share her story for the Month of March! To that end, I wanted my readers here to know that I spoke with Ayo who is the editor of Life Skills Magazine (LSM), in which my monthly column, Dominique’s Corner, runs if he would allow my column to be cross-posted here …
I’m nicely ensconced back in my apartment, thankfully. As a result of this relapse, I have moved my bed into the living room temporarily. I figure it is 20+ steps less that I have to take to go into the kitchen so that can only help. On Sunday, I actually thought the relapse might be easing a bit as the morning was the best I have had in weeks. But I crashed like a bull in a china shop in …
I thought I should pop in and let you all know how I’m doing. As you may or may not be aware I have suffered a severe relapse. I have not been this bad since I first got sick 2 decades ago. My days primarily consist of resting in bed (as I have no couch) 24/7 with short 15-20 minutes breaks where I am able to get up. Any more than 15-20 minutes, however, and my legs go rubbery, my …
Have you ever played Boggle; the word game in which you create as many words as you can as your race against the flowing sand of the hour glass? You pick up your pencil, and place that clean, empty page before you, all the while steadying your nerves for the race against time that is about to ensue. Someone turns the hour glass over, and with a deliberate, measured pace, you start creating as many words as possible. You try …
"Recieved from: Medical Assistant Schools.org"
Back My Book Theme Author: Website Themes for Writers © 2012
Youtube
RSS
Flickr
Digg
Delicious
Technorati
Twitter
StumbleUpon
Facebook