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Saru

This'n That #10 - Mysterious Chemicals?

30 posts in this topic

That was very intresting and very...dare I say....different Nancy! original.gif

Enjoyed reading it.

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Ben....... Goodness, the ink wasn't even dry yet from SaRuMaN posting it.

wink2.gif Thank you very much for taking the time to read. Tis true, all true.

Nancy kiss.gif

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I am a fast reader, I also sit here sometimes refreshing the pages for new posts. original.gif

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Fascinating article Nancy! I love reading your editorials. Good luck in your efforts to make more people aware of MCS. original.gif

If this is obvious please disregard, but could you explain this last sentence a little better?

I've "died" four times now, yet for some reason? I'm still "here." Although my personal world is shrinking, I refuse to give up.

I'm confused about "died" and "here" having appostrophes. I'd like to understand what this sentence means.

original.gif

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If this is obvious please disregard, but could you explain this last sentence a little better? 

I've "died" four times now, yet for some reason? I'm still "here." Although my personal world is shrinking, I refuse to give up.

I'm confused about "died" and "here" having appostrophes. I'd like to understand what this sentence means.

original.gif

oops.... starlyte, I apologize for the confusion, in using quotation marks.

I have "straight lined" .. "CODE BLUE"... Four times... Meaning pronounced dead. Fortunately, those fancy paddles brought me back "Here" revived, alive, this plane of existence. Lots of IV steriods, nebulizer treatments and being incubated.

All of these incidents happened in various Emergency Rooms, in either California or Florida. All four events were a result of extreme "triggers" that created what my Pulmonary Dr's call "Drop Dead Asthma" meaning, I have little if any time to survive.

Thank you again, for your kind words starlyte, I deeply appreciate it. original.gif

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Posted (edited)

Nancy, that was fascinating, it really was. My heart goes out to you.

I'm utterly baffled as to why this isn't a recognised medical condition, or at least a condition recognised by doctors 'in the field'.

EDIT: I've just read your previous post and I'm even more baffled now. It must be ghastly. You are a far stronger person than me Nancy, because I would just have given up a long time ago. My respect to you.

Edited by Aslan

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Nancy, I'm glad you posted your story here, so others here could

know how much you've had to endure. You know my wish is that you

won't give up, although my first wish is that you no longer have to

fight with the people who are supposed to be helping you.

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Nancy ,

Your great ... that's it your great , O.K. inspirational even .

I must say I can't help sharing a little empathy with you here

Unlike broken bones or high blood pressure, there are no proven tests available or methods to track and give undeniable proof. That makes this a Catch 22 situation. You know you are ill. Your family knows something is wrong. You look for answers, guidance, professional help. Guess what. You are out of luck.

Those of us who have this, the only way to begin to cope is to learn on our own. To read, research, reach out, and trust that someday we will be accepted for what we have, as a genuine illness.

In reality, we self-diagnose and put the pieces of the puzzle together. Then, when the completed puzzle is presented to someone who is trained in the medical profession, we are perceived as overbearing, intimidating and step on toes of those who should have the answers. The world of medicine does not want us to remind them that they do not have all the answers. These gods of healing are not gods at all. They pledge an oath to "Do No Harm" ... then they deny our existence.

I have mentioned before about my sons genetic disorder .

He was born without even so much as a single birthmark by the time he was 6 weeks old he had over 72 and I had been to 3 different Dr's who all gave me the same response " just keep an eye on it " , Hello....... 72 spontaeneus birth marks .

Eventually 10 years and 5 Doctors down the track we accidentally found one that could diagnose him . What a shock that was .

Even though Neurofibromatosis is the most common genetic disorder in the world so very few Doctors are aware of it because there are no treatments available for it . Not for the speech problems not for the fused joints certainly not fo the fibromas . No treatments untill the cancers kick in that is .

Doctors don't know everything yet they are taught to be arogant , because in a life a death situation asserting themselves could be crucial . In this case it's crucial you assert your self . Keep it up Nancy and thank you so very very much ...

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Nancy,  I'm glad you posted your story here,  so others here could

        know  how much you've had to endure.  You know my wish is that you

        won't give up, although my first wish is that you no longer have to

        fight with the people who are supposed to be helping you.

KC....... wow!

I presume you won't mind me spilling the beans here, that you and I are friends. I realize you know more about the ins and outs of the mess that I have been going through, than the other Members.

Your support and strong shoulders have pulled me through many times.

I hestiated on asking SaRuMaN to post this, simply because I didn't want my story to come across as "Poor Little 'Ole Nance" .... Yet, the word "different" really hit me hard, because I am just that....... different.

KC, thank you, once again........ thumbsup.gif

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I'm utterly baffled as to why this isn't a recognised medical condition, or at least a condition recognised by doctors 'in the field'.

EDIT: I've just read your previous post and I'm even more baffled now. It must be ghastly. You are a far stronger person than me Nancy, because I would just have given up a long time ago. My respect to you.

Aslan, it is with a great deal of humility that I reply.

Yes, I am "different" and in some eyes, a "freak." I've accepted that... no other choice.

Getting to know you here, through your posts, tells me, IF you were in my situation, you wouldn't give up, either wub.gif

As for why MCS isn't recognized, it is really quite simple. Although those with MCS have basically the same premise, the origins of exposure, reactions, etc. vary widely from person to person. There are only three medical facilities in the US that are willing to take this monster on, full bore.

To complicate matters, in order to secure a correct diagnosis, those with MCS have to be exposed to those elements that generate the bodies reactions and observed by those physicians familar with environmental illness. In order to do so, the patient is risking possible death. Many medical institutions are unwilling to attempt this and many more patients are too leary to go through with the testing.

Bottom Line: Those with MCS are usually diagnosed as "Nutz" (techinical term) and like so many other situations, the medical community is revered as be all and end all of research and diagnosis. They dislike being proved wrong. Then, the domino theory kicks in. Currently, various support groups for MCS are working their butts off, trying to secure an acceptable "Criteria" that meets a majority of MCS 'victims'...... sorry to be so long winded!

Your respect is graciously accepted kiss.gif

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I must say I can't help sharing a little empathy with you here 

Doctors don't know everything yet they are taught to be arogant , because in a life a death situation asserting themselves could be crucial . In this case it's crucial you assert your self . Keep it up Nancy and thank you so very very much ...

crying.gif Kismit, I must admit I wasn't aware of your son's medical problems and my heart goes out to You and your family. He is very fortunate to have you for his Mom thumbup.gifclap.gifthumbup.gif

Is is easy to see how well you do understand, based on the one paragraph below.

That only seems to come from personal experience, painful and frustrating, that I know.

Kismit? I am not 'great'....... I'm just me, but I do thank you for such sweet and caring words aimed in my direction.

Whew, the only other thing I can add is.... I must have been very naughty in my prior lives...... wink2.gif I'm paying for it nowwwwwwwwww!! grin2.gif

Kismit? you are more than welcome xooox

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Nancy, YOU ROCK!

That was a great read, and i have to agree totally with what you have to say. It appears that you have a great head on your shoulders and maybe in due time you'll cause a few more of the docs to come around, and take this thing more seriously. Up here in Canada the general action for something like that would be anti depressants, or group therapy with people you don't know, or living on welfare with $400.00 per month. I went the anti depressant route a few years ago on doctor advice, and only in the last 3 months i have forced myslef off of it, as it did far more harm than good. If there were more like you out there, people that suffer from this would be light years ahead in the health and well being department...and thusly not be so different from all the "normal" people.

EXCELLENT original.gif

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Nancy ,

I for one hope your naughty for many lifetimes to come yet thumbsup.gif

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Kismit? Thank you! grin2.gif I'm still a kickin! LOL!!!! wink2.gifwink2.gif

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Nancy, YOU ROCK!

would be light years ahead in the health and well being department...and thusly not be so different from all the "normal" people.

*sitting here in shock*

Sky Watcher? wink2.gif

As corny as this sounds, I am quite astounded at the reaction here.

I am on what is known as "Medically Needy" here in Florida. Believe me, just applying for that was demeaning, but necessary. Thr 18 prescriptions I take daily run in excess of $1,500.00 monthly (US $) ..... Since I am also totally disabled, my income is extremely limited, with no opportunity for it to improve.

The attitude of most medical professionals is indeed, also demeaning. Yet, if one struggles and struggles, eventually you can find assistance.

Geezeeeeeeee, Phantom will have to check the size of my..... ahem.. EGO as I walk out the door tonight. Hope I can't get through the door.

Thank you for your kind words......

Signed,

"Rockin N." egads...... LOL!

p.s. I promise to hush my fingers, nuff about me for a lifetime here!!

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Nancy,

Although I didn't know anything about it, MCS does sound familiar, like I heard it somewhere before. It was probably you I heard it from previously. Thank you for sharing this information, and for sharing a little bit more about you. You are a fighter, and truly an inspiration wub.gif

Edited by Homer

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Thank you for sharing this information, and for sharing a little bit more about you.

You are very welcome, Homer.... thank You for reading!! grin2.gif

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Nancy ,

Thankyou again.. Someday people will not be so careless with others and like many will come to undertand MCS better.

You are strength and a great asset to this world Nancy.. and I am very glad you are still here. original.gif

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connecian.... I appreciate that!

Take my word for it, I am no stronger than anyone else.

There are many days, many days when I consider not being here.

"Life" hands each of us so many obstacles and there are days, even weeks at a time, we wonder if we can cope with the next bump in the road. wacko.gif

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I've been thinking of a song that I like by Mark Wills called "Don't Laugh At Me."

{In God's eyes we're all the same, Someday we'll all have perfect wings.}

Everyone is different in his or her own way. So the word "different" applies to everyone. Nobody is "PERFECT".

My heart goes out to you. You are such an inspiration to many, Nancy. You probably don't even know how many others wish they had the strength and will that you have. Keep up your fight, and one day you will be rewarded in full. original.gif

Here is a link to the lyrics of the song if anyone is interested. HERE

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Allie........ Thank you very much.

True, we are all different which is one of the gifts from the Man In Charge...

Being a huge Country Fan, those lyrics have echoed in my head, many a time.

original.gif

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Nancy, I honestly have nothing to say, you've left me flabbergasted. I don't know that I would last half as long as you have, really, I think I would have ended it all pretty fast. You are an amazing human being. I have a totally new respect for you.

Kismit, is that the disorder where the muscular tissue starts turning to bone? Or am I on the wrong track? Either way, it's really horrible to know you have to deal with something like that. And both of you to have such great senses of humor, well, man, I feel so very small right now.

At the risk of sounding like a total jackass, I'm gonna reach out and give both of you a great big hug. Man,

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Hmmmmmmm, I didn't know 'jackasses' could hug!

Snuffy? You don't need to say a darn thing.

I appreciate your sweet comments and I'm sure Kismit is as happy about that hug, as I am.

Thanks for reading.... wub.gif

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Hi Nancy, How ya been.

I'm interested to know what the trigger was for you continuing to suffer from MCSS?

From my understanding of this chronic disease, the vast majority of sufferers that have so far come to light have had some kind of toxic exposure.Is this a familiar case with yourself?

On another note I have my own opinions on the modern day use of chemicals and substances.In comparison to fifty years ago, we live in an extremely clean world, a world that for the most part can get rid of a once life threatening bacteria with the use of a few pills, a world that has erradicated many plagues ( smallpox etc), but with the use of modern day medicine we are creating an intolerant humanity that simply doesn't have the armour to contend with future bugs.We are already at a major cross-roads as far as the use of antibiotics are concerned.A fact not known to most is that science has already discovered a bacterial infection that is immune to all known medication.The first known case sprung up in the USA.Needless to say the patient died.The medical and science world are reluctant to share such information with the public, but this is a bug that isn't going away.The more we use medicines needlessly, the more the bugs evolve.

I believe that this and other factors have led to our fragility and intolerance with certain chemicals and substances.Asthma is now a major problem, with more people suffering from it than ever before.Our abuse of the motor car, our pathetic attempts to genetically modify food, and our rediculous consumptiion of medication has led to new and intollerable diseases being discovered.

It is the same scientific world that has caused these miserable diseases, the same scientific world that pretend they don't exist.

Good luck Nancy...

take care..

bren.

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