Basic & Comfy

In search of ideas to fix up the guy pad downstairs, I found this. Braeden really likes it, so i think ill try to use some of ut for inspiration. The pillows with wildlife photos and the ottomans are Fantastic! The ottomans could even have cushions and double as extra sleeping space. I also had an idea to bring more light to his area, Xmas lights behind a "screen" on the wall. Aawesomee!!
a mad tea party with alis: Basic & Comfy: Sade & Rahat {} {} Home Reno round 2 is going on in my home, and spring has failed to arrive. That means we are getting toxic fumes whil...

Awesome ideas

a mad tea party with alis: Likainen Parketti: {}   {} {} I am in awe of this blog, Likainen Parketti , written by Nena from Finland. She shares incredible photos from her own home, and ...

Lemony herby Flounder

http://heavenlyhighs.blogspot.com/2010/02/baked-flounder-with-lemon-herb-butter.html?m=0
I just came across this recipe for flounder, I can't wait to try it. She has lots of recipes! Woohoo!

Finding out

I have had plenty of just plain ol' shitty luck the last few years. I broke my ankle in June of 2011 and have not been the same since. I am sure at some point I will talk about that more because it had a Huge impact on my life. But for now I want to talk about this "condition" I have. 

"You have a Neuro-degenerative Disease" is not something you want to hear from the neurologist. Add to that however, "we don't know what is going on exactly" may be even harder to grasp. 

Looking over my MRI and consulting with several other neurologists (including Mayo Clinic) they are baffled, well what the doc said was "you are an Enigma, a Neurologists dream to study". Ok, I have referred to myself as an Enigma before, but relating to my personality, not my screwed up brain. I have been on this road to try to find out what is wrong, why am I experiencing these things and having Nobody take me seriously. I was told nothing was wrong, I just need to lose weight and control my diabetes. I was even told it was just me getting Old! OLD??? I am 41, NOT 71. I understand the natural aging process, but give me some credit, I live in this body 24/7 so I kind of know what is normal for me and what is NOT NORMAL. I kept blaming my bad ankle  on my problems with walking, although that didn't make sense either. So when I had numbness in the right side of my face that then spread to the entire right side I called the doc and was told to get to the ER asap. Had the partial MRI ( I had a hell of a time staying still, my spasms in my right leg are involuntary) and was again told that I was Fine. No Stroke No MS. The neurologist on duty that day was a Bitch. She came in with this attitude talking to me as though I was an idiot hypochondriac with no MS symptoms and that we should not even finish the MRI because it would be a waste of time, I was Fine.

She also was kind enough to tell me that if I didnt get off my Butt and start  working out and stop taking ibuprofen I'd end up a vegetable in a wheelchair. Like I said...Bitch! 

So when I met with a Different neurologist (who agreed with me that she is a bitch ;D) and he started telling me they were concerned you can imagine my surprise. I said "I was told by several doctors in the ER that my MRI was fine, No, he said, your MRI is far from fine".

I wanted Pat there with me really bad right then. But I hadn't asked him to come as I thought it was a follow-up to tell me that nothing was wrong with me and that I was crazy. I guess I am not as crazy as I originally thought. 

So what I know now is that I have atrophy of the cerebellum, medulla, & the brain stem. They noted other abnormalities that they can not explain, which worries them that it could be something that they simply do not have the technology to detect. After consulting with other docs they feel strongly that it is Alexanders Disease. 

Rather than me try to explain what that is, here is an excerpt. 

What is Alexander Disease?

Alexander disease is one of a group of neurological conditions known as the leukodystrophies, disorders that are the result of abnormalities in myelin, the “white matter” that protects nerve fibers in the brain. Alexander disease is a progressive and often fatal disease. The destruction of white matter is accompanied by the formation of Rosenthal fibers, which are abnormal clumps of protein that accumulate in non-neuronal cells of the brain called astrocytes. Rosenthal fibers are sometimes found in other disorders, but not in the same amount or area of the brain that are featured in Alexander disease. The infantile form is the most common type of Alexander disease. It has an onset during the first two years of life. Usually there are both mental and physical developmental delays, followed by the loss of developmental milestones, an abnormal increase in head size, and seizures. The juvenile form of Alexander disease is less common and has an onset between the ages of two and thirteen. These children may have excessive vomiting, difficulty swallowing and speaking, poor coordination, and loss of motor control. Adult-onset forms of Alexander disease are less common. The symptoms sometimes mimic those of Parkinson’s disease or multiple sclerosis, or may present primarily as a psychiatric disorder. The disease occurs in both males and females, and there are no ethnic, racial, geographic, or cultural/economic differences in its distribution.

Is there any treatment?

There is no cure for Alexander disease, nor is there a standard course of treatment. Treatment of Alexander disease is symptomatic and supportive.

What is the prognosis?

The prognosis for individuals with Alexander disease is generally poor. Most children with the infantile form do not survive past the age of 6. Juvenile and adult onset forms of the disorder have a slower, more lengthy course.

What research is being done?

Recent discoveries show that most individuals (approximately 90 percent) with Alexander disease have a mutation in the gene that makes glial fibrillary acidic protein (GFAP). GFAP is a normal component of the brain, but it is unclear how the mutations in this gene causes the disease. In most cases mutations occur spontaneously are not inherited from parents. A small number of people thought to have Alexander disease do not have identifiable mutations in GFAP, which leads researchers to believe that there may be other genetic or perhaps even non-genetic causes of Alexander disease. Current research is aimed at understanding the mechanisms by which the mutations cause disease, developing better animal models for the disorder, and exploring potential strategies for treatment. At present, there is no exact animal model for the disease; however, mice have been engineered to produce the same mutant forms of GFAP found in individuals with Alexander disease. These mice form Rosenthal fibers and have a predisposition for seizures, but do not yet mimic all features of human disease (such as the leukodystrophies). One clinical study is underway to identify biomarkers of disease severity or progression in samples of blood or cerebrospinal fluid. Such biomarkers, if found, would be a major advantage for evaluating the response to any treatments that are developed in the future.

WHEW!! Ok so what does that all mean?

It means that my body is attacking the cerebellum/medulla/brain stem causing it to atrophy (shrink). They can not tell me what I can expect. For right now we are in a sort of limbo of not really knowing what to do. Not knowing is very hard.

They are worried that it is degenerating so rapidly the last 9 months. Will it keep degenerating at this rate? We don't know, we will do another MRI probably in Sept to see what if any changes there are. 

I am really hot, and beginning to hurt so I need to stop for now. I will continue later. 

I 

I have been meaning to start up this blog so that I can document my journey dealing with this "condition" that I have recently uncovered. I have been stalling.
Mainly because I have a hard time with my concentration. I wanted it to be something really....pfft hell if I know what I want it to be. I can't expect myself to....to always be comparing myself. I am simply going to start writing. I can't promise whoever reads it that it will always make sense, I topic hop all over the place all the time, so it will probably be kinda like a loosly tangled ball of yarn. No fiber, really cool messy pretty strands of fiber.
Haha See!
I just need to do this for me, so here it goes.
I have to come back later becuz my thumbs get really tired since I am posting via my cell. :P
But hey, its a starting point.

It's All Understood

http://www.youtube.com/watch?v=sEypk-Hxsfo


Everyone laughed at her joke
As if they'd never even heard it before
And maybe they were truly amused
But every word that she spoke was a bore
And maybe it's because they had seen
The previews on the TV screen
Well this part is good and that's well understood
So you should laugh if you know what I mean

But it's all relative
Even if you don't understand
Well it's all understood
Especially when you don't understand
Then it's all just because
Even if we don't understand
Then lets all just believe

Everyone knows what went down
Because the news was spread all over town
And fact is only what you believe
And fact and fiction work as a team
It's almost always fiction in the end
That content begins to bend
When context is never the same

And it's all relative
Even if we don't understand
And it's all understood
Especially when we don't understand
Then it's all just because
Even if we don't understand
Then lets all just believe

I was reading a book
Or maybe it was a magazine
Suggestions on where to place faith
Suggestions on what to believe
But I read somewhere
That you've got to beware
You can't believe anything you read
But the good Book is good
And it's all understood
So don't even question
If you know what I mean

But it's all relative
Even if you don't understand
Well it's all understood
Especially when you don't understand
And it's all just because
Even if we don't understand
Then lets all just believe

But there you go once again
You missed the point and then you point
Your fingers at me
And say that I said not to believe
I believe
I guess
I guess it's all relative

Jack Johnson, It's All Understood, Brushfire Fairytales.

So I was listening to music today (big surprise I know) and got on a Jack Johnson kick. I came across this song and it grabbed me. It made me think, do people really understand?
I would hope that we are evolving in a way that we can start to see the madness in our methods.
But if you spend any amount of time watching television, you quickly start to question whether it matters enough to the majority. I hope it is like all those Crime shows, nothing like real life.

He seems to be saying if you're beautiful, you're popular. No matter how boring and unoriginal you are, and that the media corrupts or sensationalizes the truth for ratings or because "sex sales". His or others' battle within themselves about God and faith...and, if you question the norm, you are considered a non-believer, are both poignant and relative. I certainly am not part of the "norm" in my community when it comes to religious beliefs.
I feel we should all go within to find our truths in life, not to simply believe what we are told. What one person believes should not make any difference to us. Isn't the more important matter that we believe in something that comes from our hearts? Not simply from being told to believe it and complying without question?

I was at the bookstore the other day (another big surprise) and picked up a hilarious book about how to play the harmonica. Yes, you read right! It was one of those "just jumped into my hands" kind of books. It is Funny, creatively written and completely worth at least a quick read.
Anyway...he says something to the effect of if we stop having the drive to learn, we should check our pulse. I absolutely agree. The same can be said about finding our core beliefs. That is something continual, you may find a belief but the universe and all that is are immense.
Are we not here to learn as many lessons as we can? It is disheartening to think some are ignorant to the fact that they are behaving as sheep. What will it take for some to wake up and realize the wolf is not really in control? I don't know. I can only speak for myself.

"He �Read somewhere that you cannot believe everything you read.� If this statement was valid, then you could not trust it to be valid, because you read it in a book as well. If the statement is invalid, then you CAN believe everything you read, making the statement valid, and contradicting itself." ~Vermillion Raine.
She makes a Valid statement here (haha).

Basically I feel he is saying that far too many of us go along with it just because, not because we have put any effort into finding our own truths. Perhaps we are not meant to understand everything, and that concept in itself can be powerful. Call it floating faith if you will.

I don't have all the answers, but as I told someone today in relation to another Jack Johnson song...I will never stop seeking them. I am fascinated by they fact that there is So much we don't know. It is exciting to me to continually search, explore, and expand my beliefs. And not because someone told me to, or to go with the flow. :)

Whole-Self Well-Being
How the Body Clears Energy

Whole-self well-being is, in part, the result of a harmonious flow of energy between our physical and mental selves. When this flow is thrown out of balance for any reason, the body and mind react to one another rather than act cooperatively. Ongoing stress, sadness, anxiety, excitement, and fear can overwhelm the cerebral self, causing traumatic energy to be channeled into the body. The body then responds by taking steps to organically dispel the energy that has burdened it and expressing it by means of physical symptoms such as illness, fatigue, or disease. In some cases, these symptoms can simply be allowed to run their natural course and recovery will come about naturally. In most instances, however, health and wellness can only be restored by a dual course of treatment that acknowledges both the physical manifestations of energy clearing and the underlying emotional causes.

Many of the ailments we experience over the course of our lives can be indicative of the body’s attempts to process intellectual and emotional energy. Swollen glands, for example, can signal that you are going through a period of emotional cleansing. Even something as simple as a pimple can indicate that your body is ridding itself of toxins and old energy. In Chinese medicine, intense emotions are held in the body’s organs as a matter of course. Grief lurks in the lungs, anger inhabits the liver, fretfulness lingers in the heart, worry is held in the stomach, and the kidneys harbor fright. Particular illnesses and symptoms represent the body’s attempts to clear emotional energy. Coughs or bronchitis can signify that the physical self is clearing away grief while a loss of appetite may signal that worry is being actively addressed.

When you feel ill or imbalanced, treating your whole self rather than treating the physical self alone can empower you to determine the root cause of sickness. Since you understand that your physical symptoms may be an expression of emotional discomfort, you can establish a balanced treatment regimen to ensure that you quickly recover your good health. ~The Daily OM