The Shadows and Inner Glow of An Autoimmune Life
For days now, I've again been struggling. Struggling in my own mindset. Struggling into between those shades and shadows, where there truly is no "black", nor white.... only shades and hues a what is a gray tone in a life that I so felt like had returned to colors.
Several months back, even just a couple of weeks back, I had found what thought was my precious "voice" again. Not the one that blabs at my Mom, nor fusses at my puppies, or rants and raves over stupid people, stupid insurance companies, and all of the wrapped red tangled web of a life called AutoImmune.... Life... that it maybe. I felt that just maybe I had unraveled some of that tangled, mangled ideology from my own soul, notice I think I still have one of those, yet sometimes it surely evades me. I was running in and out of the shadows, seeking where I felt I had found what I had been searching for now for more than a year. I can't really give you a "look" into the looking glass of those panes that I so seek, but when I find them, you too shall know it.
For then is when the words of wisdom just flow onto the screen. I type them, not even thinking about what the next word might be, not ever thinking will this sentence sound off, or will the audience that reads this "get it". None of those empty spaces even enter my somewhat empty head. Because, from my heart comes the words that are pure gold. That gold that the very streets of heaven are paved in. Yes, I do believe that the streets of heaven are paved with the purest of gold. I don't talk much about what most call "religion" or religious "beliefs". I have found just as many say, you never discuss religion or politics, hell not even on the internet, lest you want to cause the fight of your life, run your blood pressure sky high, and still be not able to have anyone "see it your way".... kind of like the humor in the fast food restaurants burger in the drive thru.. "Oh, yes you can have it "your" way"... well you may be able to have it your way... but I often wonder when you ask for yours to be unique or different, to be the "troublemaker" in the long line, what happens to that burger as they are preparing it for "your way"? Scary enough to wonder what they do with any of the food during the course of a day, much less when I am that troublemaker. I have to have "MY english muffin" without cheese and just the sausage. And yes I want strawberry jam. I sometimes wonder if they don't scrape that cheese off on the bottom of their shoe, wash it down, and throw the sausage down on it, then put it on the griddle quickly to "dry it off"!!! I have to laugh, because of the horror stories all of us have heard about where people get upset with the boss, or want to be a smart ass in Jack in the Crack, or CracDonald's as we like to call them, and do some thing hideous to the food. It happens. I just pray it is not going on where I stop and get my food from.
So, raising cane with anyone in the political or religious walk of life, is like stepping into a burning bunch of coals. I believe every one of us have a tad bit different view on both subjects. Thus I try to avoid the discussion of either as much as possible.
I have learned that the "loudest barking dog" gets noticed more. Or the person that puts their face, their name, and their own accomplishments especially those that one feels are true talents out on the internet for billions to see, may just be fortunate enough to be SEEN!!! It has SO worked for me lately. I have gotten into the "right click" (I hate that word "click"). It gives me connotations of the cheerleaders all standing around the lockers in high school making fun of all of us "homely girls". So, even though click may fit, still not in that stand point. Certainly not a bunch of snot nosed, immature, girly girls, with their short skirts and the large "pom-poms" (interpret that one as you see fit)... but more like this entire group of women and some men also, that have been brought together in a commonality of making illnesses that are still not getting enough "attention" out there for MORE research, MORE educations, EARLIER detection, when means a greatest chance of LESS damage to the entire body.... surely the JOINTS for one!
I've been dealing with once again a "loop" .... caught between the "doctor" and what he KNOWS IS BEST FOR ME! What the people down in their "pre-determination" of insurance should be trying to get straightened out, not take "no" for an answer, call the patient and tell them, you will owe 3,000.00. Your "insurance " said, you will "owe a co-pay" on the medication? This is crap!!!! If they would even bother to wake up they should know I DO NOT pay a "co-pay" or might I say "co-insurance" on an outpatient treatment. I DO pay I guess what you would call a "co-pay" which is $100.00 for an outpatient procedure that does NOT involve surgery, MRI, CT scan or a nuclear test. It is very plain and simple as they nose on their faces. They cannot give me this line that they don't know... bull, I am NOT the only patient with the Humana plan I have. There are MANY patients on a Medicare Advantage Plan like Humana, and they know for the most part what benefits are before they even bother to call. What the DO NOT do, is get their "diagnosis" coding, and proper wording from the doctor done, THEN call. So, when they do not have the proper "type of procedure" coding for an "infusion in an infusion only setting, for medication that is a "biologic" that I CANNOT administer to myself. So, since they don't have their own paperwork in order, my insurance tells them I owe of course, as I said my $100.00 co-pay. But, due to the nature of how the "infusion" medication has to be coded, Humana comes back with well the patient will owe 20% for the MEDICATION! NO, I do NOT pay separate for a medication I cannot administer myself. It is NOT a Part D drug!!! It must be given in an infusion center, through an IV process. I surely am not going home with an "IV kit", a bag of lactate ringers (or whatever they use now), an IV pole, a bag of Rituxan, and am going to put the IV in and give myself the medication over a 5 hour period!!! In the first place that is about the stupidest thing I've ever heard of. In the 2nd place why are people that have NO CLUE what these medications are, what their use is, how they must be given... why are none of them educated???
You can believe when I was a "Patient rep" at the hospital for 6 years, I better "know" my stuff. Including what certain medications were for, how they were given, and what things meant as a whole for a patient whether surgical, illness, ER... of course I was not a nurse, BUT I was expected to be "educated" on much of the terminology and how some procedures were handled.
If that is not bad enough it is almost unbelievable what I have gone through this past three days just trying to get our local Wal-Greens pharmacy to "fax" my Enbrel Sure Click script over the the "Right Source Speciality Pharmacy".... I have been on the phone with this pharmacist at LEAST 7 times...
What part of "Fax" the script over does he not understand!??? I had called the Right Source, asked them exactly what they needed. They told me to have this pharmacy just fax over that script, that the "prior" authorization was probably already in the "Humana" system, thus they can get that and they can fill the script and mail it to me... for some reason, one that baffles the hell out of me, this idiot here at WG KEPT trying to run it THROUGH WAL-GREENS!!! Each time it denied it! And I kept seeing emails coming in and for my own sanity, I was just about ready to jerk his head off his neck through the phone, when I CALLED for the 8th TIME today! Thank goodness one of the girls answered the phone, took down the information and said she would make sure it got handled tomorrow. The only ridiculous thing she said was that it was "against the law" for them to "fax" a script over???? BULL!!! I've had them had to "fax" scripts over to other pharmacies when maybe one does not have the medication, so they "fax" it to one that does... or maybe it is cheaper and/or so forth... and there was never a problem... hell most of the scripts they get now are either "faxed" OR send via the computer, from the doctors???? Anyway, the phone rang about 15 minutes later, it was guess who??? I would NOT answer it, because if it was him, it was NOT going to be pleasant, not for him at least... so my husband answered it... "he" told my husband he had "faxed" it at 5:06 yesterday afternoon... well why did you try at 4:56pm try to put it through WG again!????? He waited until they were closed there, then faxed it... again it is delayed due to stupidity!!! What is worse, this man is supposed to be a PHARMACIST!!??? If he cannot understand the simplicity of "fax a script" how they heck will we trust scripts to be right????? Frightening thought at the least.....
Well, I am saying... this is an end to this post... I am a BIT CONCERNED that all of a sudden all my new traffic I was having suddenly just took a nose dive.... within a few days... anyone know possibly why???? Maybe not enough of my "own posts" and more about other stuff???? I have no clue, but it does concern me...
I am actually working on my book. I have about the first 10 paragraphs that I began on it late in the evening yesterday. But, this freaking bad headache from hell is giving me the blues... it is truly messing with my eyes ... and just reeking havoc with my vision... but at least I HAVE BEGUN!!!
I have NOT announced the name of it yet, BUT I am seriously thinking about putting the name out... I shall give it some thought... My fear at first was someone would try to "steal it" from me... but, I really don't think so...
Rhia
One morning early a couple of years ago, when we were heading for OK for the day to take Mom to the Casino!
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