Translator
IN MEMORY
What I’m Listening 2
Tag Archives: perspective
DIET is KEY
After living with ME since December 1992, I have learned over and over that when I make any plans I must also plan for the payback that will undoubtedly come. That may sound like I’m being negative because I’m planning for the crash that follows the fun but it really isn’t. It is just a fact of life, unfortunately, when one lives with this unrelenting illness. I had a wonderful time helping my sister get her new website ready and …
Boston and Bear …
I am sitting just outisde of Boston at my sister’s house and enjoying the white sky and the white ground. Everything is white. While it is really nice to see so much fluffy, white powder everywhere, it is also nice to know that this is a temporary thing and I can enjoy it for the moment knowing that I will soon be heading home soon. I heard back from the rescue organization – Homeward Bound – and I have passed …
From Empty to Full
I wanted to share something I have been going through with my readers. This may in fact be more of a woman thing but I think it really is applicable to my whole readership. I have been in a bad head and emotional space these last few months. Totally understandable with Dekker’s one year anniversary (death), my father’s sudden heart-attack and quadruple bypass, the birth of my grandson, a betrayal by someone I considered a friend and the severe relapse …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, consequences, Fibromyalgia, FMS, friend, grief, health, hope, journey, life lessons, loss, ME, Myalgic Encephalomyelitis (ME), personal, perspective, pugs, Purpose, winning
11 Comments
Jan 2012 ME Story: Kassy
I don’t know if you have ever woke up in the middle of the night in one of those, “Oh my gosh moments?” Well, I did last night. I was thinking about what I would say in this post before I went to bed and then woke up in the middle of the night realizing that today’s ME Story which is shared by my friend, Kassy, is our 12th story on Becoming Visible 4ME which means … We have now …
Simplicity, 3 Words, and 2012
I was catching up on my blog reading, when I came across Tamara’s new post at Empty Thoughts, Rewritten, and it caught my attention. The reason it caught my attention is because I have been thinking about words that keep rising up within me that reflect where my heart and soul for 2012 is, especially after my two-part series called, My 12 Changes to Living Better with ME: Part 1 of 2 and My 12 Changes to Living Better with …
If I let myself admit it, I …
I have been thinking about what direction my blog will take in 2012. To be honest, when I originally launched 4Walls and AView 2 years ago, I only intended to do it for 2years because I thought there would be no, or little, interest. Guess I got that wrong since I now have over 70,000 hits and 250 readers, huh?! Thanks to my wonderful readers and thier interaction and interest in my blog I will obviously keep writing! So, that …
Learning to LIVE like a DOG
As I sit here in the early morning hours, I am transfixed by the haphazard sprinkle of lights against the black canvas of night. Silence permeats the cloak of darkness, and yet, there is this innate knowing that city life is slowly awakening to brewing pots of coffee and tea, and that a new day will soon be in full force. The melancholiness of the hour mimicks my heart as I realize that today is the one year anniversary of …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, Dekker, friend, grief, hope, journey, life lessons, loss, Myalgic Encephalomyelitis (ME), personal, perspective, pugs
18 Comments
Dec 2011 ME Story: Cusp
I have had the joy and fun of getting to know a woman on Facebook this past year or so. She has to be the most unique, creative and interesting person I have had the pleasure to friend in a long time. God only made one Cusp and she is amazing. Her ME story touched me deeply because unlike many of our stories, her story starts in her childhood. I hate this illness for adults but the devastating impact it …
Navigating a Week full of a Myriad of Emotions.
I often find that life offers me many opportunities to become a better me, if you will. This week is no exception. With the news that has been slowly trickling out about WPI (the Whittemore Peterson Institute who researches neuroimmune illnesses) and Judy (a major player in ME research), this week did not start on the best foot. Then the news came of two deaths within the ME Community and for me that has just had me grieving all over …
WPI: Another Blow for the ME Community
I was greeted this morning with news that completely blindsided me and I was guessing many of my readers had not heard the news either so I am going to share with you all here. According to Dr. Jamie Deckoff-Jones, there is breaking news about WPI (Whittemore Peterson Institute in Nevada). Here is what she had to say on her blog. Breaking news. The entire WPI research program has been closed by the institute’s CEO, and the facility is now locked …
Wedding and the Promise of Possibility
I finally made it to my friends wedding in Claremore yesterday and as I promised many of you, I am posting the photos here. Unfortunately I am not in them because the wedding started with out me as I was a little late. But my friend’s wedding went off without any other hitches and was lovely and she and her new husband are quite happy! It was really nice to see her so happy. My friend did capture one of …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, friend, perspective, photography, wedding
16 Comments
MY Rebirth: Choosing MY Own Color Palette
I have been repeatedly asked what has caused the transformation in me that people seem to be noticing when they see me in person and even my good friend, Toni, asked me in an email recently about the change she noted in my birthday photos. So, I thought I’d share the broad brush strokes here. Toni responded to my explanation that I had been reborn. I think that really is what happened. The relapse was so severe and so all …
Allowing Illness to shape me into a better person
I was sitting on the rooftop deck this week (it would be the 11th floor) as it has become my favorite place to write … and if you can believe it … dance. Anyway, I was sitting there looking out over this expansive view and thinking about a time where everything before me would have been a barren wasteland – something called the dustbowl. Yet, as I looked out over the vast city I love I saw business thriving, beautiful …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "Invisible Awareness", consequences, Fibromyalgia, FMS, friend, health, hope, journey, life lessons, ME, mold, Myalgic Encephalomyelitis (ME), personal, perspective, Purpose, relapse, winning, write
14 Comments
What Would YOU take?
My friend Mo recently asked a question that really hit home with me on her blog, Mo is Blogging … I think. I decided to ask it here for two reasons. I was curious how my readers might responsd and I was curious if what we would want to take as those living with ME might be different than those who are not ill. This whole subject was started Foster Hunnington. Here is a little about his blog and this …
In TOMORROW, there is always the PROMISE of POSSIBILITY
I recently was having a conversation with a friend of mine online who also has ME about what I had learned, if anything these past eight months of being bed, house and wheelchair bound. I’ve been thinking about that a lot. The absolute delight and joy that invades me when I step out into the sunshine is indescribable. I feel the warmth of the sun kissing my skin, embracing me in it’s warmth and I start to tear up with …
A Play: Cognitive Disconnect
BOB: “Are you ready?” ME: “Yes” BOB: “So where do you need to go?” ME: “You know. That place with all the stores in one place?” BOB: “The Mall?” ME: “Yeah! That’s it! I need to go to, um that store across from that burger place we like … next to um Marshalls? I think?” BOB: “Are you talking about Ross’s? ME: “Yup” (sigh) BOB: “What do you need?” ME: “Sunglasses.” BOB: “Do you know what kind?” ME: “Yeah. Progressive. …
i CAN’T do THIS
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "i CAN'T do THIS", "myalgic Encephalomyelitis", 4 walls and a view, bad day, friend, grief, health, ME, personal, perspective, Purpose, relapse
18 Comments
PUSHING is NO Longer an Option. Take ALTERNATIVE Route!
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 …
Today I am THANKFUL 4
[Thanks #1] …. because it affords me mobility, freedom and continued independece.
A Battle of Wills
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 …
Why I Dropped the “F” Word
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 …
Responding to a Dr.’s ME Ignorance and Arrogance
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, doctor, ME, perspective
20 Comments
Finding Solace from the Constant ME Onslaught
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, bad day, broken, cognitive, Dekker, facebook, journey, Kathi Wilson, ME, perspective, solace, Weary
9 Comments
The Gift ME gave me
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, eyes, gift, life lessons, ME, personal, perspective, vocal chords
18 Comments
There is another side of, A Letter From a ME Survivor to Everyone Else.
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, fatigue, journey, life lessons, ME, perspective, write
33 Comments
A Letter from a ME Survivor to Everyone Else
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, consequences, crash, Dekker, fatigue, friend, ME, perspective, write
90 Comments
The Energy Conundrum within ME
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 …
I Have … Hope
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 …
ME: Becoming Visible
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 …
Mr. Winter and Ms. Spring
For the past few weeks, the weather here in Tulsa, Oklahoma, has been volleying back and forth between the 20’s and the 40’s. But yesterday, as well as today, we were suddenly greeted with a wonderful spike in warmth as we have watched the temperatures climb to the low to mid 70’s. Tomorrow, we return to the normal pattern of our weather volleying between the 20’s to the 40’s – with a little possible snow thrown in the mix. This …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, FMS, journey, life lessons, Mr. Winter, Ms. Spring, personal, perspective, relapse, symptom
18 Comments
CHANGING the DANCE w/the Beast within ME
One of the things I have discovered throughout my life, and especially living with a chronic illness, is that life isn’t fair and it usually comes with a myriad of unexpected circumstances. Most of which require me to do one of two things: adjust and grow or complain and stay stuck. I’m am once again finding myself in a new place in this journey with ME/CFS. It is a very odd place to be and yet I have this amazing …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, crash, FMS, health, journey, life lessons, Myalgic Encephalomyelitis (ME), personal, perspective, relapse
33 Comments
Changing MY Expectations of the word DEFEND
As many of you have probably noted, I have been struggling this past week. To be honest, I think my eye issue derailed me and I have been wandering around in the wilderness. You might think that is a bad thing, but for me, it really isn’t as it provides me the space I need to think, to pray, to analyze, and to contemplate deeply. Sometimes it affords me the breathing room I need to just let go and do …
a Triple Cord is NOT easily broken
This past Monday was a turning point for 4Walls and AView. It documented the one year mark since I launched this blog. As I look back at all that I have written this past year, as well as the comments and what has transpired as a result of the birthing of 4Walls and AView, I am deeply moved and humbled. When I originally decided to stop blogging about politics due to a decline in my health and my cognitive abilities, …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, aniversary, Dekker, FMS, health, hope, journey, Myalgic Encephalomyelitis (ME), perspective, strength, triple cord
25 Comments
2011: A life of Simplicity
I have been reading many blogger’s New Year resolutions with wonder. I’m always amazed at how the New Year stirs up all sorts of new plans, hopes and desires in people. I think that is a great thing. Even so, this year I decided that I am going in a different direction. My New Year’s resolution, if you will, for 2011 can be summed up in one word – simplicity. The losing of all my worldly possessions, my home, and …
Stand Firm
Grief is a funny thing… These past 3+ weeks since Dekker’s death have been a rollercoaster of emotions. These past few days have found me wanting to move past the grief, and yet, unable to. As I recently told a friend, it felt as if I was stuck in my life and nothing I tried helped me move forward. That is a very hopeless feeling. Several days ago, my friend, Cusp, sent me a note on Facebook telling me about …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, Dekker, grief, journey, life lessons, loss, personal, perspective, pugs
20 Comments
lessons I learned from a woman with autism
Sometimes life’s lessons come unexpectedly, and from places we could never imagine, such as books, movies – or even, a woman with autism. As you are well aware as a reader of my blog, I have been overcome with grief at having to have my beloved pug, Dekker Black, put to sleep. These past seven years were filled with a companionship I never truly understood until he was gone. While I knew the decision was right for Dekker, it is …
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