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Please pass the google

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Google and other search engines like Wikipedia are great tools. They give us information when the search terms are right. We could only have wondered at this kind of ease of information at a public library's card catalogues eons ago. Ah, those days holding those boxes with all kinds of arcane knowledge!

And yet as helpful as it is, the whole picture cannot be given in a quick look at a search term, or even groups of terms. Research is not  for the faint-hearted and it still goes on by very serious people, who then submit papers and work for peer review and appropriate criticism. And there is plenty of criticism. No one researches a subject with any claim to being serious and expects to hear an angel's choir. It doesn't happen in the two areas where I have done research, Nursing and Law. What you are really attempting is to give a snapshot of what is happening out there, hoping to elucidate and educate. Other times we are just hoping to expand our own knowledge with the principle,

It's better to light one candle than to curse the darkness.

So what I'm saying here is don't presume that you understand a person's physical, emotional or psychological status because you "googled" something they said off- hand.

Of course, you were curious, that's only natural,  but then what did you do with what you learned? Did you check it with the person involved, or did you just go ahead and make assumptions about them? Did you even go so far as to say that "You'd figured them out?"

Well, that must be some googling right there, Sherlock Holmes has nothing on you. And yes, I'm being sarcastic, but did you in your rush to understand something at it's very simplistic, think that you might be causing pain?

And that nothing is ever as simple or easy as it looks on google. That for all of the white-splaining, man-splaining , gay-splaining etc... that we can only apprehend a little bit, a soupcon of what the other person is feeling,  and that is if they let us in, granting the privilege  to know what they suffer or feel. It's not something to be taken lightly, and only with permission

And we do get it wrong.Believe we understand something.  That is why I don't share, or only very occasionally,  because to me the diseases that have taxed me are private. I sometimes admit to having relapses with Crohn's disease. And this October I had the worst, I obstructed. I was hospitalized in agonizing pain and just escaped surgery which for Crohn's patients is often the kiss of death.

And so, as a result, I underwent some tortuous procedures and tests that saved my life. I left grateful to have that life but it meant more changes to the protocol that I lived under. It's an auto-immune disease and many people right on this blog suffer with them. An non-exhaustive list includes: Multiple Sclerosis, Ankylosing Spondylitis, Crohn's, Rheumatoid Arthritis, Psoriatic Arthritis, Asthma, And various other diseases that the immune system manages to foist on the healthy. Most of us aren't born with this.

The thing is, almost all of us have had to use the drug Prednisone while getting our various conditions under control. Most of us only have to use it when when we relapse, or switch to another drug and have a gap in coverage. A lot has been learned with certain diets, other alternative measures, and a category of drugs called biologics that actually treat the specific syndrome rather than just bludgeoning it to death until it stops annoying us.

A biologic, for instance that I take is Humira. It is an anti-tumor necrosis blocker. In my disease I have too much floating tumor necrosis factor, and Humira blocks it for about a week and then I have to take it again. Without it the TNF (tumor necrosis Factor) causes pain and inflammation in the GI tract. When it works it's great! I give it sub-cuteanously once a week and I go about my life pretty normally.

But when it fails, or there is too much stress or who knows really? Well then PrednisonePrednisoneis the drug that helps reduce the inflammation and gradually allows the biologic or new medication to begin to settle things down.

So to give you some idea what this glucosteroid does:

Prednisone is used for many different indications including: asthma, COPD, CIDP, rheumatic disorders, allergic disorders, ulcerative colitis and Crohn's disease, adrenocortical insufficiency, hypercalcemia due to cancer, thyroiditis, laryngitis, severe tuberculosis, urticaria (hives), lipid pneumonitis, pericarditis, multiple sclerosis, nephrotic syndrome, lupus, myasthenia gravis, poison oak exposure, Meniere's disease, and as part of a drug regimen to prevent rejection post organ transplant.[2]
And the price tag can be big physically. Because it alters all of your pituitary, hypothalamic and adrenal systems when you are on it for a week. But it is not an anabolic steroid that muscle builders use and it is not responsible for "roid rage."

The biggest problems are not sleeping well or normally, altering your desire for sweets, increasing your blood sugar, gaining weight, getting a "Moon-looking" face, getting a beard if you're a woman. Sometimes there is increased anxiety, hair loss, increased appetite. It varies. With me, I curse like a sailor, out loud and my children and my doctors laugh because ordinarily I don't use profanity, I will talk to anyone and my daughter will die of embarrassment. I have been known to clean the house at 3 AM, even falling out of bookcases, and awakening my husband. I laugh out loud at dumb stuff, tell jokes I didn't even know I knew. I am the life of the party.

So some of it is good because I can clean the house in no time flat! Who wouldn't if they could? On the other hand if I begin to feel omniscient well then it's time to come off and wean down to respectable levels. That can be hard. But for those of us that have no choice well it's cheap, and it works and then when we're back in remission - we forget about it and try to stay in remission. But there are no guarantees. Auto-immune disorders cause a lot of misery. It's one of the reasons that there is such great community in groups like Kosability because we all have been there.

So when you seek to understand what I might be going through, I would check out the Kosability group and see what people are saying and feeling. But for me google just doesn't cut it, nor does it adequately explain a complex disease process.


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