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View Full Version : Ever had a disease that is not a disease?



chas
03-03-2009, 09:47 PM
Hello my name is Chas and I am a hyperventilation survivor. It has been 17 hours since my last sharp breath...

Have you ever been diagnosed with hyperventilation syndrome? If so - don't be fooled into thinking you have finally found the Mecca from which all your health problems derive. It is actually the term assigned to neurotic shallow breathers who accidentally deny their brain of oxygen and then end up with all sorts of related disorders such as insomnia, blurred vision, dizziness and the like. If you are afflicted with psychological stress then understanding this syndrome and changing your breathing can actually help you. Once you start to get some oxygen you can start to think straight. Obviously you are then better equipped to improve your situation and increase your well being.

But imagine being diagnosed with this condition, taking breathing lessons from your physiotherapist, reading books to help you make changes and YET you still have insomnia, blurred vision and dizziness and a host of other vague symptoms. Welcome to my world. I call it - Loopyland. In this world, if you have ever travelled to Hyperventilation Syndrome Land, all borders to credibility are now closed.

Luckily it seems blood tests indicate that I may actually have something physically wrong with me but here is where it gets tricky - my blood tests might mean something and they might not mean anything. Sorry, can you say that again? Okay - I may have something clinically wrong with me and I may not have anything wrong with me. Fantastic!! Welcome to the refugee camp of Suspected Autoimmune Disorders I am now in SADland. Here you must await entry into Auto-Immune Disease Land but at least you might have found a potential home. The alternative is to consider the idea that your symptoms are a figment of your imagination. Yes - you are stuck without an exit plan.

So what is an auto-immune disease? It is a systemic condition where your immune system gets confused and starts attacking your own body. In some conditions diagnosis is quick and easy but for many people diagnosis can take years because of the erratic nature of symptoms. Blood tests are indicative but not definitive. Factor in the idea that these disorders can flare and remiss and you are now trying to explain a mechanical fault that disappears the day you take your car to the garage. Add to that the hope that perhaps your body has simply been prompted into an autoimmune response and you do not have an autoimmune condition and I think you get the picture....

Loopyland is a difficult place to inhabit. Sure I have met dozens of similar inmates but it has been difficult to connect with people based in the land of tangible accountability for all things besides Theism. Oh the irony.

Have you ever had a disease that is not a disease or a condition that is not a condition? Well if you are a resident of Loopyland and you try to explain that premise to people - they will think that oxygen is the least
of your cognitive worries.

Angel Oliver
03-04-2009, 03:48 AM
Oh i have been to Loopyland and Sadland often. YOU ARE NOT ALONE!!! There is a bar there which you may have visited called ''Its all in ya ed''.Oh and that nightclub ''Hypa condria''. Ive been a member now since 2004. I hear you :)

Love
Angel.xxxxx

mountaindreamer
03-04-2009, 05:14 AM
good morning chas,

yes, I visited loopyland for several years, The ride that carried me around and around was named by a dr. and it was called "oh, I don't recognize fibromyalgia". Does this mean that it is in my head or that you (the dr) is limited in his cognitive abilities?

chas
03-04-2009, 12:37 PM
- I am positive it is all in your head...perhaps you should take some multivitamins and for goodness sake get out in the sun.

-Oh I have a rash like that but it is simply caused by age and hormones. Perhaps you shouldn't take it all so seriously....

-If you were busier you wouldn't have time to overthink these things.

mountaindreamer
03-04-2009, 12:50 PM
thanks,,,,,those are hysterical. I especially like the "get busy" solution.....

phyllis

Saysusie
03-04-2009, 12:54 PM
So, apparently, these are lands in a world that we've all been living in. There may be some of us who are merely visitors, but the vast majority of us are permanent residents and we recognize all interlopers (usually called doctors) who try to deny our world. Yes, indeed, in this land, there exists conditions that are not conditions, symptoms that are merely figmants of our imagination (so say the interlopers), blood tests that run the gamut from positive, to negative, back to positive again; conditions that overlap and love to mimic one another so that we can't possibly get a definite diagnosis of anything without having to wait for years. This is a land where nothing follows any linear progression; every symptom & condition branches off into new and different symptoms and conditions until we look like a leafless tree with a myriad of branches and twigs that lead to nowhere in particular.
We have no leaders to look up to because no one in this land is exactly like us, so we roam around, bumping into one another, and searching desperately for some sort or recognition in each other. And yes, we do recognize one another, understand one another, and support one another, because no one else will!
We all live in loopyland and, together, we are strong. We demand that we are listened to by the interlopers, we demand that we be taken seriously and that we be treated according to our symptoms and our own knowledge of our bodies. We stand beside one another to help each of us to navigate through the haze of auto-immunity! It is Loopyland, but it is our land and we will fight to defend ourselves in this land!
Let no one underestimate us or take us for granted!

Saysusie - Permanent resident of Loopyland since 1985

mountaindreamer
03-04-2009, 01:08 PM
while reading your exquisite description of our lives, i had the visions of a pine forest. Alone, the single pine tree is tall, scrawny, branches going everywhere but nowhere, and will eventually succumb to the wind. However, as as forest, they blanket the ground with soft straw, they grow straight up toward the sky, and they don't break....they sway with beauty and grace in the wind.

So, in my world, my loonyland now brings the vision of a beautiful old pine forest, and we all stand together and sway in the wind.

chas
03-04-2009, 01:40 PM
Oh i have been to Loopyland and Sadland often. YOU ARE NOT ALONE!!! There is a bar there which you may have visited called ''Its all in ya ed''.Oh and that nightclub ''Hypa condria''. Ive been a member now since 2004. I hear you :)

Love
Angel.xxxxx


I am sure I have a resident bar stool in both drinking establishments.

chas
03-04-2009, 01:42 PM
People - your creativity is coming out. It will be hard to carry on the crazy charade if this keeps up.

Saysusie...we'll take our last stand on the beaches - but we will need adequate sunscreen.

sick n tired
03-04-2009, 10:11 PM
After reading about the looney land that your doctors have placed you in I felt the need to add my voice. I also am in that land but I haven't heard the "all in your head docs" going so far as saying that you have to learn how to breathe!!! As if...
Angel I have a barstool at both of those, too...perhaps I sit right beside Chas...dont' worry I will help you remember to breath Chas....I am rolling my eyes at your docs.....

Also...If there is a revolt on the beach, count me in...I am so there.