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IN MEMORY
What I’m Listening 2
Tag Archives: health
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 …
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 …
My 12 Changes to Living Better with ME: Part 2 of 2
If you missed the beginning of this two part series, you can catch up with part one HERE. Today, I am going to share changes 7-12 with you. 7. Change Place: As I mentioned in part one, so often when I am in the midst of a wonderful event, spectactular moment or memorable time, I am often only their in body but not spirit and soul. This is probably one of my most challenging changes because I am so annalytical. …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, consequences, Fibromyalgia, FMS, health, hope, journey, life lessons, loss, ME, Myalgic Encephalomyelitis (ME), Purpose
8 Comments
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 …
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 …
65 Things I am Thankful For
This year, hands down, has been one of the most challenging years I have had in a long time. So many obstacles have littered my path that I have had many moments of darkness and overwhelming fear. But I have been determined to keep putting one foot in front of the other no matter what. And at the end if this year, I am still standing and I am still here! With my father’s heart attack in October and Thanksgiving …
Posted in Family, Myalgic Encephalomyelitis (ME)
Tagged family, health, heart attack, ME
16 Comments
Update on My dad
Just wanted to update you on my dad’s status. If there are any typos…my apologies as I’m typing from my Blackberry. My father came through tht surgery very well. He is stable though still unconscious. We are going to see him today and hoping that he will be able to come off the ventilator today or tomorrow. I will post again as I can. Thank you so much for all the prayers and good thoughts. You all supported me majorly! …
Posted in Myalgic Encephalomyelitis (ME)
Tagged dad, health, heart attack, surgery, update
16 Comments
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 …
Can Food Heal MY BRAIN?
I was recently reading Baffled’s blog, Infinite Daze, (great blog to check out if you haven’t already) and she had posted a video. I decided to watch it in full (or more accurately listen to it) and by the end, I was jumping up and down with excitement! I just had to share it here and tell you why I am excited. Dr. Terry Wahl was diagnosed with MS (which we know is similar in how it operates in the …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, Food, Healing, health, journey, ME, medicine, Myalgic Encephalomyelitis (ME), symptom, Terry Wahl, winning
21 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 …
49th Birthday Update
In Oklahoma we always have to be cognizant of the weather. We never know when a tornado or bad weather is going to creep in and change our plans. Unfortunately, it did just that for my birthday. After dinner, we had to move inside and there was no room for dancing and the band was just way too loud. An hour was about all me and my friend could stand. Despite the bad weather though, I had an incredible night …
Mad as Hell and Broken Hearted for Jenny
Thank you Lillie for reminding me that not all my readers know who Simon Wesley is. He is a UK (England) based psychiatrist who believes ME and CFS are not real organic illness but illness that are psychological and social in nature. Essentially, we are sick because we say we are sick. He is a huge proponent of CBT and GET which have been shown not to work in most people with ME and actually has caused many patients to …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, health, Jenny, JK Rowbory, journey, life lessons, ME, Myalgic Encephalomyelitis (ME), personal
11 Comments
September 2011 ME Story: Barry
As I was getting ready to put up todays post, I was stunned to realize how much things change in just eight months. I am out of bed, out of my wheelchair, and exercising for the first time in almost two years! And today, I put up our eighth story over at Becoming VISIBLE 4ME! In addition, this month’s story is our first male story which I was very interested in reading. I have been getting to know Barry for …
the TRUTH about ME
This is an excellent video about the truth of myalgic encephalomyelitis (ME). I have all of Giles videos now on the Becoming VISIBLE 4ME youtube channel because he does a really good job. This video makes it clear that the many misconceptions being propogated by people like Simon Wesley needs to stop and the truth needs to be told. I thought I would share the video with you and we could all help Giles makes this go viral as that …
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
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
Defining Progress in Severe ME: Part 2: Living in Black and White
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 …
Waiting for … Creativity
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 …
Defining Progress in Severe M.E.: Part One -Breathing Issue
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 …
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 …
Dealing with Life’s In Between Chapters
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 …
Letter to My Family and Friends
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", friend, health, help, letter, ME, Myalgic Encephalomyelitis (ME), relapse, update
24 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 …
March 2011 ME Story: Toni Bernhard
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 …
Life is kinder but ME is still kicking my butt!
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 …
ME and the Need for a Little Extra Help
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, crash, fatigue, health, ME, personal
29 Comments
The Hour Glass Paradox
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, crash, energy, fatigue, health, hour glass, journey, ME, paradox, symptom
11 Comments
Part Two: Post Traumatic Vision Syndrome (PTVS)
Well, if you didn’t catch part one, of this three part series, you can do so here. Now on to what I dug up on Post Traumatic Vision Syndrome or PTVS. The earliest article on visual issues in ME/CFS that I could find (with the help of my friend Laurel: hap tip!) was this one back in 2001 by the CFIDS Association. In it they explain that, There are few references in the literature to visual and/or ocular disturbances in …
Part One: Keeping an eye on my EYES
I have been getting ready for my eye appointment with my favorite eye doctor. I decided to do some research on whatever I could find concerning eye issues with ME/CFS. Mind you, this illness has been on the radar since at least the 1980′s. However, I was only able to find 4 articles! Is that crazy or what? Anyway, as a result I thought I would start writing about it on my blog because I have actually received several emails …
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
Challenging CHANGES
As my readers know, the months that have followed my exposure to a toxic chemical have been full of challenges and changes. Even though I would rather forget about much of 2010, it appears that some of those challenges have now followed me into the New Year and I now have to confront them and find way to overcome or work around them. As you know I have been having a lot of trouble with dizziness. So much so I …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, audio books, books, crash, eyes, Fibromyalgia, health, Myalgic Encephalomyelitis (ME), read, reader, symptom, write
54 Comments
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
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