Giving a "Voice" to All of the Frustration of Being Chronically Ill Human Being...

I believe the very first thing I want to point out is in the "title" of this blog post. That is the two words, "Human Being". None of us are robots, although as of late, many act like it. None of us are beyond mistakes, stresses, illness, economic woes, job losses, kid issues, family problems, and an entire gamut of "what could" and does happen to "good" people. When I say "good" people, I am speaking of us main stream normal everyday folks, that try our best to do our jobs, take care of our bills, raise a family, and be a "stand up" kind of person, who wants what is best for all. We don't begrudge others a nice life, a good vehicle, health for them and their families, and the ability have have what is considered a "quality of Life" we feel is truly worth living.

All of that sounds very simple. Life.. used to be "simple". I know what some will say to my next statement, "life seemed a great deal more simple, when we did not have but a one room school house, raised our own food and animals, got our milk directly from the source, had the "ice" man delivery the "ice" block for your ice box, had a radio NOT a TV, not the internet, not fast cars, cell phones, video games, and back when kids went outside to play. When kids played then, even in my life, I went out to "use" my imagination to occupy time. I was an only child, thus I spent Summers outside, with my dollar, my little table, making up all kinds of different things that kept me out in fresh air, active, and not sitting in front of a television for 12 or more hours a day. I can see now "hind sight being what it is...20-20" many things that are contributing factors to all of our "hardships", our downfalls, our chronic illnesses, whether emotional, mental or physical that we want to shove under the rug, run to the doctor, take a quick pill, much like running through the "drive-thru" for coffee, we are too lazy to park, get out of the car, and go into a place to get coffee anymore.. our excuse?? We are TOO busy! Well, if you are TOO busy to go inside and buy your lunch, get a donut, pick up a six pack of beer (now that you can even drive thru for freaking beer), then I say you are TOO DAMNED BUSY!
All of the above seems to not have much to do with what the title of this post is, nor does it seem any of it relevant to chronic illness and chronic pain. But, it is all relevant. Our entire lives have evolved, in good ways, I will not say that all we have accomplished is "bad". But, we have also "engineered" ourselves right out of jobs, "automated" our lives into a never stopping conveyor belt of high prices, lower quality items, food that is "tainted", medications that are "tainted", people that are not willing to get up off their butts and do their jobs. If they can't sit behind a desk and be "boss", then they think the job is "beneath" them. Boy, you cannot tell me you do not know those like that. I have met several in my life time so far, and it gets worse everyday.
We will not accept that WE HUMANS HAVE RUINED OUR WATER, AIR, AND LAND!!! WE have MELTED THE POLAR CAPS. WE have CAUSED CANCERS, HEART ATTACKS, AND STRESS THAT SEND PEOPLE RUNNING TO THE NUT HOUSE! Or "self-medicating"... how many do you know that weekly, daily use alcohol, food, TV, video games, being on line in a social media place, possibly other drugs that are not "legal", sex, shopping, spending more money than they make... and the list goes on and on... of ADDICTIONS! We totally rely on so many addictions, whether to food, spending, or alcohol to "prop" ourselves up daily so we can do it all over again in this rat race we call life.
We will bitch, moan, whine, and stomp our feet, of things we do NOT believe are RIGHT! BUT, take action?? IF you can gripe about it, then you can DO SOMETHING! Write an email, a letter, make a phone call, attend a rally... do something other than give these things "lip service". I can tell you right now WORDS with NO ACTIONS, gets you NOTHING BUT FURTHER UPSET AND STRESS! It only leads to more frustration, more depression, more attitude of giving up and throwing in the dish towel of life. So, why are we so in "fear" of voicing how we feel???
What makes us rant and rave "online", but come up to the person, or place, or thing that is upsetting you, and lips are closed, mouth shut, and a "pleasant" face put on... in other words DO NOT rock the BOAT!!! Why??? FEAR???? Have WE as a society that is supposed to be the MOST DEMOCRATIC (I get to where I despise that word... we need a "new" word for those that can give "voice" to their opinions and thoughts, without feeling like you have to "apologize" for what you have done or said. As long as you are NOT HARMING YOUR NEIGHBOR, or causing misery for someone else, you SHOULD BE ABLE TO STAND UP AND SAY HOW YOU FEEL! You should not feel as if your friends, family, doctors, other professionals, anyone is going to "stop" seeing you, not take care of you, no longer "fill" your medications... just because you may not "see" something the same way that another does. WHY are we SO ASHAMED of our own thoughts and feelings.?

We live in enough fear of terrorists, of bombs, of those that shoot people for no reason, of the insanity that happens here daily... we are fighting wild fires,, droughts, and ALL OF THE MOTHER NATURE EVENTS that if we look back in history, MAN CREATED HIS OWN DEMISE. We have ignored our Earth way too long. We have ignored polluting it, of using it up, of covering it up with concrete; then all we can do is "finger point" to who did it? ALL of us! Each and everyone of us are contributors to our own realms of waste, pollution, of the demise of the medical profession, of the demise of our own government. We can bitch all we want to, but WE PUT THEM IN OFFICE! If it is broke, FIX IT! Sometimes the well just runs dry and you have to freaking drill for a new one. And this "well" for our government is dry and getting drier daily.

Ignorance is NOT bliss! It is just plain ignorance. And "denying" all of what is happening, is just sticking your head in the sand and watching for the other shoe to drop on it.

Now onto the "REAL REASON" I am writing this morning... As you can tell, if you are following me here, or on Facebook, my life, as well as my family's life has been in a freaking turmoil now for more than weeks, let's try months. Since January of this year, thank goodness for my spouse, and my Mom, and all of those out there that are "rooting" for my side of the ball game.
I began with what seemed like the "flu". Made sense. After all it was "flu" season. Yet, each day, rather than get better, I seemed to be worse. I began to have pain, and it got worse with each passing day. I developed worse fatigue, muscle aches, deep down in the bone pain, in my legs, my feet, my ankles, hips, and lower back. I was so extremely fatigued, that for weeks, I was literally not able to even drag myself around my drive way to walk, water my flowers, hell I could not even sit at my computer. I went to my regular doctor, my pain doctor, to a neurologist, in fact 3 of them... and had every kind of blood test, EMG, NCS, CT Scans... all coming up with "something" small, that may have "contributed" to the pain, etc... nothing that should cause such massive pain, massive fatigue, and make me feel like I had been just ran over by a bus once or twice. We even questioned my pain pump and went so far as to have the medication completely removed flushed and put new medication back in.
this was already mid-February. We did not know where else to go. I had a couple of doctors that gave me a "new diagnosis". One of which was "myasthenia gravis", and they even suspected Multiple Sclerosis, of which had been suspected on several occasions. This went on until about the first of March. Then one morning, I woke up, and all of the "symptoms" seemed somewhat "better"...  each day thereafter it seemed to have a bit better feeling. We never put our finger on the reason why. so in essence I think myself, mu spouse, the doctors "chalked" it up to the "Lupus" and a very bad flare... and the RA, of which the meds were not working as well as they should be... plus I probably did have the flu, and all of it caused that "perfect storm" of illness that raged through my body. What I never did really think about, is in the meantime my pain doctor had "upped" my pain medication when all of the stuff began, and he left it like that. So, possibly I was of course better, other symptoms were going away, but the "pain" could have been somewhat masked over by the increase (change) of pain medication. I got "better", yet I really never got "well". I had other health issues come up, a "myoglobin" issue, that would be a contributor to muscle pain, the RA of course, of which the Humira was definitely not working as it should have been, plus several other things like finding out I had radiculopathy issues, and my lower lumbar spine had definitely done some deterioration in midst all of. Any and all of those things could be combined with my Chronic Lupus/RA issues, to be the culprit of my ongoing new type of pain/illness issues.
Well, the boat seemed to rock a little and put me back in whatever I want to "think" is kind of "normal" for my life. Yet, that was NOT to last long. Come about Mother's Day. I recall it being close to then because I and my Mom were planning to go to the Casino to spend the night. On that Friday before I began to just feel lousy. Again fatigue set in and almost simultaneously, the pain I had so hoped would not return was back with a vengeance. I was definitely in no shape to make even a 2 hour trip to have a good time for Mother's Day, so we decided to postpone and go the following weekend. Well, by then things were already worse. Again, the severe and deep bone pain, in my hips. legs, feet ankles wrists... it was all back once more. This time I went straight to my PCP, getting prednisone injections and a 14 day step down of it, and having them do what they could to "stop" again what we thought was a very bad flare. From there I have battled everything from several of my teeth needing to be pulled all of a sudden, to several cavities, to the double vision I have been fighting for over a year (not one doctor, even the best "neuro-opthamologist") ever figured out why my vision is double., to the excruciating pain I was and this time again it required not only an increase of my oral "break through" meds, BUT an increase of the medication that is in my pain pump. I have spent week and weeks, almost crawling at times around my house, not feeling like even baking something. I have been to my orthopedic surgeon who injected both hips and both elbows that were giving me heck. He feels that my thumbs are too deteriorated to even put medication in, and my hips, and elbows also show signs of further deterioration, which could cause the pain in my legs, hips, lower back, feet and so forth. I am continuing the battle with my own health issues, then week before last I got not only just slapped in the face with, but knocked down with a "suddenly very Odd" "certified letter" from our own Primary Care Doctor. Now this man is wonderful. He diagnosed my Lupus. He had been the doctor who found much of what was going on with me and had been working to "fix" what he could, and sent me to other doctors to do other things to help me feel as well as I possibly could, under my chronic health issues.
This "letter" came while I happened to be at my Mom's and my husband got it. In fact it was for my husband. When I got home, I stepped out to speak with him on our front porch and I could tell by the look on his face, something was very wrong. I had not been gone long, so of course, I was "in a panic" wondering if something happened to one of the dogs, or he had gotten a phone call with bad news. When he began to tell me about this letter, a certified letter he received in the mail, I asked him what he had won? Then I abruptly saw and heard that this was no joke, that this was a serious situation, and after he finished, I had to read the letter and see with my own eyes what he had told me.
It was very formally addressed to him, as if a "stranger" had written it. Yet, this certainly was not a "stranger" at all. This was OUR FAMILY PHYSICIAN that had been our doctor now for at least 6 years. For me, a little longer, because I went to him first. In fact I was probably one of his first 15 patients. He had not been in practice very long at all when I felt like I had found the "perfect march" as far as a family practitioner. Not only did he have an incredible "bedside manner", he is intelligent, he was way educated much more than the usual family doctor, because he tested me and found out things about my health issues that not one doctor in 40 plus years had been able to find.
My Mom was also looking for a new PCP. Her previous one was old, and going out of business basically, so I suggested my new one to her also. She went and also was very pleased. He seemed to be right on top of the latest and greatest. At first, he did it all. There was not any of this referring you to 15 doctors. He tested, found out what was wrong, and with "your" help as an "educated" patient (another big plus in my book, he loved educated patients), he would treat you himself, if possible without sending you all over the country. Again, a small town, with very few PCP in it all the years I was here, this doctor was like an angel sent from above. Things rocked along, and my husband began having issues with his lower back. He does not have insurance. Thus he would be a "cash" pay patient for awhile, until we could afford some kind of policy. But, this new doctor seemed to be much more concerned about "patients" than money, and he charged a very nominal charge to see my husband, he also tried to keep tests, scans, and expensive things out of the picture unless absolutely necessary. So, when my husbands back began to give him more problems other than just the usual three or four times a year, this doctor did a few Xrays, determined the situation was probably something he was born with, and as the years went by, arthritis, and a narrowing of the spinal canal was putting pressure on the main nerves in the lower spine, thus causing horrid pain off and on. Again, we were very impressed. He tried several different types of medications, also treated him for blood pressure issues later, and High cholestral problems, and we were ticking right along, no problems. In fact I had highly recommended him to anyone that happens to be in need of a family doctor.

Well, there was a couple of issues that we had to deal with off and on. One, was the "office manager". He was just an ass, to put it bluntly. He always looked down his nose at everyone. He thought he knew it all, and even though he I am sure is "good" at his job... he is NOT good with people at all. I had more than once complained about his attitude and that I did NOT want to be treated as if I am pond scum. I was certainly not bad about being an overly needy patient, and I tried to refrain from asking for too many "favors". In fact, I really never asked for anything other than a few forms to be filled out in order to get my husbands medication filled for free or for much cheaper than the pharmacies.

This doctor diagnosed my Lupus and RA. He was the one that started me on medications for them, and took care of me, while I tried to find a Rheumatologist with some kind of sense for sure. To this moment, I nor Jim, nor anyone can figure out what the hell went on, and what caused this "sudden" issue, when it is plain as the nose on anyone's face that there was an Error, on the part of their office to NOT tell the Lab to DO THE BLOOD TEST A CERTAIN WAY OR, the LAB did NOT run it the way they were told. Either that, or there is SOMETHING, SOMEONE, is NOT telling me! I know what I see. I know what happens when I am around and there to witness it. But, if I am totally left in the dark about an issue, or something not right, then I cannot make an informed "reason" as to why something like this happens.

Now I do know a couple of "facts". First of all, this business about the government, the DEA, the entire realm of mess in Florida with pain clinics and seedy "quack" pain doctors etc.. has definitely put "fear" into lots of people, along with made a "Good medication" when USED CORRECTLY!, Look like a monster! But, as I said "used CORRECTLY"... IT IS LIKE anything else, if you "abuse" it, then it is Bad for you... or bad for whatever... Then you give "too much power" to some people in a place such as someone over the "legalities" of meds without any governing power over them to oversee what is done, is NOT harming some, and you get a freaked up pile of mess, that THE LEGITIMATE PATIENTS suffer needlessly from! There is NO reason, not one that any person that is truly a Chronic Pain Patient, that has NEVER abused anything, that has lived by their "pain contract", that has "passed" "tests" of whatever, all this time, or been treated like things are totally fine, only to be delivered a ridiculous letter, without any type of warning, without one sit down in front of you and explain WHY this is happening! IF anything is wrong with this, THAT POINT is what is MOST WRONG! WHY NOT have a CONVERSATION AND EXPLAIN this to a PATIENT, rather than take the "unprofessional" and just plain rude way, and not speak to them, not answer their emails, not answer a phone call, not ask them to come in and have a visit, nothing... and then you are also seeing their families??? Now how is that going to go? Like I said above, this situation puts me in such a horrid crack... I am stuck between first of all NOT KNOWING for SURE what is going on, only what I see and know... it puts me in a place of course of being upset, embarrassed, and thinking why should I see them if I could get the same treatment. Down the line a few months, and they stop refilling my medications? And I am not talking about pain medications, I am speaking of medications for my Lupus, my blood pressure, heart and so forth. If this doctor is leaving, or is "mad" at my family, or has something with us that he does not want to treat my family, then he should be professional enough, to just speak up face to face, and tell us what the hell the deal is! If I or my husband, or my Mom, have offended someone, or hell knowing this town, God only knows what kind of stupid "rumor" he has been told... because believe me this town is known for its lying, gossiping, half truths. People do NOT get the entire story, so they "make UP" what they want to... in which sometimes people's lives get frigged up due to a flat out lie being told. Before you open up your mouth when it involves anyone's "reputation" or their "good name", you had better give it deep thought, and then really understand what you could cause. If you are going to "stir up harsh feelings" or cause someone to be "smeared" and you are not sure what you are talking about, it is better to just keep your mouth shut, rather than say something you will harm someone with by being nosy. Small town are noted for that crap. One reason why I did NOT want to move back here... the small town mentality, the gossip, the "whispering" behind your back... those things I just cannot stomach. Since I have been trying now for 3 days to "finish" this and post it, I'm going to say it is "finished" enough to post & if I have further thoughts, I will just add it on and let you know there is a new "piece" under it...

Quality of Life - EVERYONE Deserves It!

I am still so completely puzzled as to why all of a sudden with no warning, all of this nightmare comes down on patients? Of course we have known about Florida and all of the "fake clinics", "fake pharmacies... and even the issue with WG I guess being fined for not watching more closely about medications and who is getting them. But that STILL does NOT explain WHY long-term, contract following, knowing the medical records and health records well, having all the proof in the world that a patient is definitely "in horrid chronic pain".. doctors would be under so much pressure they absolutely STOP even talking to their patients. Honestly, this makes things WORSE not better at all! MOST patients if sat down and explained to that a doctor must stop seeing them for the pain issues, but they will continue their meds for a month, or help them at least step down a little on the meds until they can get a physician, and tell people WHY in the heck it is happening, you will get MORE FLIES with HONEY than with VINEGAR!! You are talking about PEOPLE'S VERY CORE LIVES HERE!!! People in communities that know everyone, and everyone seems to know everyone else's business. And if you destroy their "reputation" by making it appear this person is some kind of pusher etc... how do you expect that family, that person to walk into their local stores? How are they supposed to "work" and help make a living, if the pain is so bad they cannot? Who is going to pay the bills? Who is going to be a "care taker" of someone they have at home with many severe chronic health issues? PAIN often is SILENT as far a just "seeing" a person out in public. Pain patients DO NOT GO OUT when the pain is TOO BAD!!! THEY STAY BEHIND CLOSED DOORS TRYING TO COPE! ONLY when a person "feels better", is having a "good day" and the Illness (not just pain BUT OTHER SYMPTOMS WITH ALONG WITH IT) are not as "obvious"... which makes things worse. If you "do not look" ill, people assume you are "well'...I ask what does a chronically ill patient supposed to "look like" in public??? Of course we have good days, with less symptoms, and we cherish those days. We CAN possibly make it to buy a few groceries, or pick up our medications. We can walk around our yards, enjoying outside, we can go see a friend, or go out to eat... but those days are rare and precious! So, think about when you see someone you KNOW i chronically ill... I bet there are times YOU DO NOT see them for days, weeks, even months.... IT is just not pain, it is severe fatigue, severe stomach problems, severe headaches, brain fog, fevers, not being able to be around "sick" people. other medications that may make you feel lousy, hundreds of other issues besides "pain" that keeps us "hidden" until we have a "feel somewhat human" day again... The days that you go you do not even feel like taking a shower.. the thought of just even putting your legs in just wears you out, the days that you are on the verge of wanting to scream, sit in the floor and cry, you beg God or anyone to help you, the double vision, the scars from many surgeries, you can't be in the sun, you can't run, you can't do things "normal" people do, you do not feel like putting makeup on, or fixing your hair, or even seeing anyone. Your pale, your unable to think, you can't even find words to describe what you are trying to say, you drop things constantly, you can't remember where you parked, or what your pin number is, or what stores's debit system works which way. You have to make a list, to remind you of your lists of lists, you have sticky notes all over the house to "remind" you of everything. You battle all of the many demons of going to doctors, taking a handful of pills (not pain but others) daily just to make sure you don't get thrush, an infection, that your heart works right, that your anxiety does not get the best of you, that your muscles do not spasm so bad you can stand it, that the joints that are "not" replaced yet try and work right... ALL things "chronically ill" deal with. Then you have those with kidney failure, lung issues, heart issues, and if you have had a HEART ATTACK then dealing with TOO MUCH PAIN for TOO LONG can bring on ANOTHER MI! I was speaking with my Mom the other day, and she talked about an article she read where a woman had been in so much pain, for so long, and she was just not able to get anyone to help her, that she jumped off a building. EVERYONE has their own "breaking point"... Some have strong thresholds, other their thresholds for pain, anxiety, and stress are much lower... and when you put a person that is trying their best to deal with chronic illness and do the "right thing" in order to have some type of quality of life, and you JERK AWAY the very thing that gives them QUALITY OF LIFE, what do you think they are going to do? There is going to be an epidemic of other health issues, the stress and strain on chronically ill patients bodies is already over the top. Then you bring in more stressors of life, like not being able to get their proper meds, and that is enough to make them now want to deal with it anymore... it is harsh, but it is the truth... as I said everyone has their BREAKING POINT... So, this "battle" is not just about medications for pain, it is about the very core of giving quality of life to everyone.. And taking away something people honestly need to get that much needed quality is just unfathomable at the very least...

Showing My Own Support of the "International Foundation for Autoimmune Arthritis" and the co-founder Tiffany Westrich

http://www.ifautoimmunearthritis.org/Home_Page.html

Please visit the URL above! This is just a wonderful Foundation that is helping by leaps and bounds in the World of Autoimmune Arthritis. The co-founder Tiffany Westrich is just an angel sent to all of us for sure. I want to help all I can to get the site and all of the information about them out to everyone. When you have a moment, visit their brand new website that is above. You can also join them on Facebook to keep up with ALL of their latest ways they are making a difference in the realms of autoimmune arthritis.

Rhia

It Continues to Get WORSE for Legitimate Pain Patients!

http://hometestingblog.testcountry.com/?p=25926

This article is just one more example of how the "few" out there doing WRONG can make legitimate people's lives a living hell. I have seen more stories over the weekend of the very circumstance we are dealing with. IT continues to baffle the hell out of me though, as to WHY a family doctor, who has KNOWN you family for 5 or 6 YEARS... would just NOT SPEAK! No explanation, nothing... not a phone call, nothing but a "form" letter, that he probably did not even sign or read, just sent out like you were some stranger off the street. It is insanity! I know "they" as doctors have their own "reasons" as to why they handle things like they do. I have already went over all of that in my head. BUT!!! IT STILL does NOT make it RIGHT! AND it is the most unprofessional way to handle a patient I have ever seen. Now, due to him being my personal doctor and my Mom's, plus several others I know here in town, WE ALL feel very UNCOMFORTABLE GOING to him... yet after you are an ESTABLISHED patient... that has such a very long medical history with so many complications as I do, thinking about even trying to get another doctor to UNDERSTAND all of my ILLNESSES and treatments... is crazy! Sure they can, but who in their right mind wants to take what "is working", and try to make such a huge change???
If I were a patient that had the "usual" visits. Flu, normal things you go for, blood pressure, physicals, and the occasional stuff, going to a new physician is not that difficult. BUT, when you have SCORES OF symptoms, due to SEVERAL CHRONIC illnesses, trying to "train" (for lack of a better term) a new doctor is a job! It would take a new PCP months and months to even READ MY RECORDS! Much less understand ALL that my current PCP does for me... So, that is another huge issue.... This could be so different if it would have been handled properly. Now I am left in a lurch not really knowing how to handle it all. EVERYONE in that office has acted STRANGE EVEN before the letter went out... to my entire family... and we "felt" something wrong, but did not know what.... and how can I look him in the eye (I am supposed to see him for a follow up on Lupus next week) and in fact have blood work done tomorrow there at the office. If I don't have the myoglobin checked he probably won't refill my muscle relaxers.. see so it runs into huge issues with my own health.


Here is another article that appeared this weekend.... same thing

http://americannewsreport.com/nationalpainreport/my-story-pain-clinics-are-money-mills-8821277.html

Updating how the "Wolf" can "eat you alive" when it wants to....

I am not sure whether to laugh, cry, scream, be quiet, fade away, burn brightly or.... to just fall off the mountain top... and say to hell with it all. I guess I CAN FATHOM that others have just as MANY STUPID "Life" issues as myself and my family do. I have open eyes and an open heart to so many that are out here suffering in one way, the other... or several! Health issues, money issues, raising kids, jobs or lack of them, the rage, the horror, the outlandish behavior of other so-called "humans"... all frightening as have ever been. Mother Nature has put a "hurtin' on so many across our own nation, and furthermore across the world, even just trying to "digest" all of that is almost impossible. Droughts, fires, severe flooding, pests of all kinds, tornado's, hurricane's, high winds, hail the size of baseballs... I mean everywhere you turn, either some home is falling in a "sink hole", or things are so bone dry, all you see is dust. Then you look at another state, and they are so totally enveloped in floods that cars are floating down main street USA! How insane is that? Then the fires... it is just so difficult to watch, thousands upon thousands of acres of land burn up, and people lose everything, even their lives. Then we have the latest of a barrage of "transportation" evils. Trains, planes, huge buses full of people, all wrecking, reeking havoc for hundreds across the world. It seems every day you turn on the news, or read it online to see once again, yet another bus, train, plane, or even a 50 car pileup has completely blocked off major highways everywhere. That is just a "few" of our MANY, MANY dire straits of issues that as plan American folks, and Plain World people that we deal with daily. The pain, the suffering, lack of clean water, of food, of places to live, of money, of medications (how the HELL can WE as the "great" nation we are supposed to be running OUT OF SOME MEDICATIONS???? I am sorry but that sounds absolutely ludicrous. Look HOW MANY Pharmaceutical companies we have, and a pharmacy on EVERY CORNER even on all 4 corners in many towns, yet we CANNOT KEEP A INVENTORY OF MEDICATIONS WE NEED???? NO, more like if they cannot MAKE A FORTUNE ON IT, they "CUT" OFF THE SUPPLY... in other words , GREED!!!!! This is not including the RIDICULOUS RED TAPE MESS, our Insurance companies, hospitals, clinics and doctors are in... along "in bed" with the pharmaceutical companies, that bunch in Congress, that have their own agenda and the "lobbyists" that contribute to fuel the GREED of this nation! Every time I think about HOW SOME FOOL BEHIND A DESK can TELL ME WHAT I NEED MEDICALLY AND DO NOT NEED MEDICALLY OVER MY OWN PHYSICIAN it BURNS ME TO NO END!!! What the hell do we have physicians for, if some pencil pushing, not caring if you die, person, that does NOT even know a medical term or what the name of a medication or procedure is, much less what it is for, tell US and our DOCTORS what to do??? IT is one sad damned day in America, that is what it is!!!! OF course, then you have the entire other side, of those doctors, hospitals, and so forth that are just as screwed up as the people behind those desks. Never in my 53 years here have I ever seen a bunch of incompetent jack asses trying to half do a job that they have no clue about. I am not A GENIUS BUT!!! I can tell you that myself, along with MANY, MANY of US know more about the world of MEDICINE AND HEALTH, more than some of the nurses, and others that are supposed to be "taking care" of us!!! Talk about scary!!! It is down right a nightmare if you think about it.... Now, I am NOT one normally to be down and out about everything, but this past 8 plus weeks for myself and my family along with a few of my good friends have SUFFERED WAY TOO MUCH... and yes I QUESTION WHY???? I try NOT to question things, and to realize life is what it is going to be. We have SOME CONTROL, but many times we have very LITTLE OR NO CONTROL, when it comes to life and it's good, ugly, nice, down right hellish, and indifferent. I have literally spent HOURS AND HOURS ARGUING WITH People because THEY DO NOT DO THEIR JOBS! Sending myself, or my Mom bills that they DO NOT file RIGHT WITH THE INSURANCE COMPANIES, then EXPECT US TO PAY! That is bull! File it right, you WILL GET PAID! But, I do not think there has been ONE CLAIM THIS YEAR, THAT HAS BEEN FILED PROPERLY! Every doctors office, the hospital, the pharmacy, you name it, has filed something wrong, then tries to collect from us!!! If they would just do their jobs RIGHT, then it would take SO MUCH STRESS OFF OF US!!! IF I WANT TO FILE MY OWN INSURANCE THEN PAY ME AND I WILL DO IT RIGHT THE FIRST TIME!!!

I do question the entire process of "why BAD things have to happen to the "best" folks???? It makes no sense to me these days. The greedy, the ones that could care less about their fellow man, that treat others like trash, that live their lives in a gutter so to speak, seem to "breeze" by...  Only to have those of us who, DO GIVE a damned about others, we try and treat people with kindness and compassion, we do NOT live our lives as if we were the only people on the planet, we work, pay our bills, and do all of the "right" things, seem to be hit the hardest with illness, pain, suffering, stressful life situations, and we do NOT DESERVE IT! A dear friend of mine is going through a horrible time fighting the big "C" word again. Bless her heart, she already did that at a very young age, back when we were just youngsters, and she won the battle. NOW, here she is years later, battling the monster again. She is the kindest, sweetest, compassionate, gentle soul, that takes care of her family in every way... and she just does NOT deserve to go through this again... no way, no how.... yet here she is having to once again walk through the hot coals of chemotherapy, and yet still trying to put on a happy face and work! It breaks my heart honestly. I also had a girl I have known since I also was in High School that I saw about 3 weeks ago. Her family and my family were close during those years when we were kids. Our Dad's worked together, we went on weekend trips to the lake together, they hunted deer together... and now her Mom is going blind from macular degeneration... and if that is not bad enough, the woman, who is several years younger than me, has Parkinson's! We are talking about someone in their mid-40's!!!! What makes that even worse, and I did not know it until I saw here a couple of weeks ago, she lost her husband last year to an aneurysm, as they were driving down the highway, he died right there beside her in the passenger seat!!!! Talk about wondering why?? Her Dad already has Alzheimer's, and honestly I think he may be so bad he is either in a nursing home, or he may have passed away, but I was so taken aback by all of the other things she told me, that I felt uneasy even asking. Even though this is a small town, sometimes since I don't get out all the much, I miss out own things going on to others.

Pieces of me feel like they are just "floating away" these days. I feel as if the very "substance" of my own heart and soul that I have walked in, with faith as much as I can, has just taken another road, journeyed away from me... and pieces of that are also my "voice" that has always given me the "right words" to write... it is like that "voice" has been silenced by too much of life's horrible drama. I so looked forward to possibly putting out my 3rd book in a year or so, but now I question whether that will EVER COME TO PASS AT ALL. I truly felt that I had SOMETHING TO GIVE TO OTHERS, through MY WORDS FROM MY HEART, yet somewhere down the line, "my" plans have been altered... so I am just not myself these days... I feel as if I am SOME OTHER person... I do not even recognize myself anymore... not so much in a "physical" sense, but in a sense of "the core center of who I was"... that seems to have "left the building" as that old adage goes.... much like "Elvis"... who I was, seems to not be who I am now... I can "blame" it on illness, pain, drama, life's little nightmares that can change your entire outlook in the blink of an eye".... some good, yet for me, I see it as not good at all... where it that writer, that "creative" entity... I miss her... I miss "Me"... I spend more time trying to "get well" that I spend being "well"....

I have FINALLY my Rheumatologist's Appointment this morning!!! HOOORAY!!! I pray he can help, and he usually does. I have missed not seeing him in over 6 months, so I cannot tell you how LONG MY LIST IS FOR HIM!!! There is LOTS AND LOTS OF FLOOD WATERS that have flown under my bridge since he saw me last. I DID email him some of my issues, and some information last week. I felt the MORE he knows BEFORE I get there, the more fruitful our appointment will be. Alas, I just hope we do have enough time to discuss all that is happening. I believe from an email I received back from him last week, I will be going on an infusion of Rituxan rather than the Humira. Or I gather I will stop the Humira, and only take the Rituxan. I pray it helps to reduce all of this pain, swelling, and mainly damage that is happening from the RA!!! Then I have lots of other things like those two other osteoporosis medications I found out about last week, I want to discuss. If I can take them, and have a chance of doing anything to remotely halt my bones from growing any weaker than they already are, then injections it is. I already take them anyway, so I might as well as 2 more in, that is if it is right now me. Of course there is all of the other pain stuff, joint stuff, and the list is endless to kind of go over... but if we can get at least the RA meds changed over to something else, and get me on those osteoporosis meds... plus I am sure he will have some answers on other things for me... I will be happy...

Then tomorrow, I go to the "foot" doctor... she is taking a look at my big toes, ankles etc... and we are going to see if I need "tarsus tunnel" surgery in my big toes... from the tests it appears that night help so we shall see... From there Friday, I go to have a CT scan on both hips... yes, that one will cost out of butt... they now charge a fortune even with insurance for the damned things... but since my hips seems to be so sore, and giving me hell even after the injections a couple of weeks ago, it could be they are causing lots of the issues I have with my lower back, legs and hips.

AND if things are not bad enough!!! I FOUND OUT MONDAY, that this TOP FRONT TOOTH, THAT GOT busted off half in two in the 4 wheeler accident when I was about 25, is now loose, and has enough decay, that it is no LONGER PATCHABLE!!! My dentist had to tell me I am going to be looking at a ROOT CANAL AND CROWN! I almost DIED, FAINTED, PASSED OUT, AND FREAKED, when I called for A PRICE FOR THOSE!!!!! How the HELL DOES ANYONE AFFORD A ROOT CANAL AND CROWN!!!?????? Lord have mercy, that is like buying a damned car!!! I do not know what I will do on that one... the "cheapest" I found was about $1,600.00 FOR BOTH! I called even "Monarch Dental" and hell they wanted something like well over $2,300.00 OR MORE FOR THE TWO OF THEM!!! Hell I thought they were supposed to be "discounted"... It is insanity... but I have NO PLACE to have a "partial plate" to Hook onto, due to my bad teeth that have just been pulled in back due to the Sjogren's... and I was told if I had them all pulled, the Sjogren's would also cause me grief with a plate... due to the dry mouth... so it is damned if I do, and damned if I don't... I am just baffled over that one...

Well, I shall just stop for now... lots of other stuff I could go into, but I want to get some other stuff done today, since I will be once again in and out the rest of the week with tests and doctors... damned I am over sick of it all... Hugs to all... thank you everyone for your compassion, kindness and friendship.... Hugs, Rhia

When a "good" situation goes HORRIBLY wrong - finishes up from FB posting....

It is from his personal doctor, who he has been seeing now for over 5 YEARS... maybe more... almost since we got to TX.. and we got here in 2005... well, basically, due to THEIR ISSUE, WITH NOT DOING A PROPER TYPE OF LAB WORK!, they arbitrarily decided to send him a KISS OFF LETTER... BASICALLY... in other words... because the "lab work" was DONE IMPROPERLY, rather than checking it out TO FIND OUT WHY IT WAS "NOT RIGHT"... THEY send him a letter, saying "I WON'T SEE YOU ANYMORE"... NOR PRESCRIBE YOUR MEDICATIONS YOU NEED! Now WHY in the HELL would ANY PHYSICIAN with ANY GOOD RELATIONSHIP with a LONG TERM VERY WELL KNOWN PATIENT, THAT has been there forever... and DOES TO THE LETTER whatever this doctor asks.... AND PAYS CASH.. he has NO INSURANCE... just decide NOT TO TALK TO YOU..Not to have you come into the office, JUST HAVE SOME CERTIFIED FORM LETTER SENT TO YOU ON A FRIDAY, so the OFFICE IS CLOSED... and ALLOW A PATIENT TO NOT ONLY BE TORE UP, DISMAYED, PUZZLED, AND ASKING WHAT THE HELL IS GOING ON???? It is BEYOND ME! It is INSANITY!! I do KNOW... THAT THERE IS SOMEONE IN THE OFFICE, THAT DOES NOT care for "us".... and I also know they can be in a position to CAUSE MAJOR ISSUES, due to the position that they play at that doctors office... and it would NOT surprise me IF THEY DID NOT HAVE SOMETHING TO DO WITH ALL OF THIS... Need less to say, IT HAS CAUSED Jim MORE GRIEF TO THE PLACE HE HAS ME HORRIBLY WORRIED... he is BEING ACCUSED TO SOMETHING THAT IS NOT ANYTHING BUT A HORRID LIE!!! AND A JOKE... but IT HAS BEEN TO THE PLACE OF BEING SO UPSET on TOP OF MY OWN ISSUES WITH HEALTH, that I fear I am going to have another HEART ATTACK!!! I am beyond with words upset over all of this... I FEAR EVEN POSTING THIS... because I KNOW THIS TOWN TOO WELL!!!!! (and we are talking about medications that Jim needs... blood pressure, cholesterol, (Anti-depressants, his stomach meds and the meds he takes for his lower back, that without he cannot work!) After all of the research I did online, I found out, that WE PAID FOR THE RIGHT TEST! and these results have been in now for 2 WEEKS... yet we just get this stupid letter this past FRIDAY! WHAT IS UP WITH THAT?????? We have copied documentation from several sources, he has written a long letter about this entire ordeal, attached with the "lab work" done wrong (and it even says it was NOT done as it should have been), and taken it to this office today)...  Please continue to pray for us... this is just not good at all.... We KNOW what WE ARE DOING IS RIGHT... but a doctor can make or break you... if they want... or someone else in their office with the "right" or "wrong" power... can make your life a living hell....

Grand Showing over the next couple of Nights! The Perseids Are Back!!!

The Perseid's are back! They are supposed to  be spectacular, and peak on Sunday and Monday with 100 or more an hour! Thought I would share some information for those of you who are night owls and might enjoy the "show"....


http://www.nasa.gov/connect/chat/perseids_2013.html#.UgXc8FOUXgBPerseids Meteor Showers

http://earthsky.org/astronomy-essentials/earthskys-meteor-shower-guide

45 Tips for Life (saw this in FB and wanted to share)

I saw this in FB just a little while ago in one of my groups, and it just seemed to "fit" after the week from hell I, along with several have had... thought it might help you also get through a rough patch of the "stickers" of life... :) 

45 Tips For Life

1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short – enjoy it.

4. Your job won't take care of you when you are sick.
Your friends and family will.

5. Pay off your credit cards every month.

6. You don't have to win every argument.
Stay true to yourself.

7. Cry with someone.
It's more healing than crying alone.

8. It's OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past
so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others.
You have no idea what their journey is all about.

14. If a relationship has to be a secret,
you shouldn't be in it.

15. Everything can change in the blink of an eye
But don't worry; God never blinks.

16.. Take a deep breath.
It calms the mind.

17. Get rid of anything that isn't useful.
Clutter weighs you down in many ways.

18. Whatever doesn't kill you really
does make you stronger.

19. It's never too late to be happy.
But it’s all up to you and no one else.

20. When it comes to going after what you love in life,
don't take no for an answer.

21. Burn the candles, use the nice sheets,
wear the fancy lingerie. Don't
save it for a special occasion.
Today is special.

Over prepare, then go with the flow.

23. Be eccentric now.
Don't wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words
'In five years, will this matter?'

27. Always choose life.

28. Forgive but don’t forget.

29. What other people think of you
is none of your business.

30. Time heals almost everything.
Give time time.

31. However good or bad a situation is,
it will change.

32. Don't take yourself so seriously.
No one else does.

33. Believe in miracles.

34. God loves you because of who God is,
not because of anything you did or didn't do.

35. Don't audit life.
Show up and make the most of it now.

36. Growing old beats the alternative --
dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day.
Miracles are waiting everywhere.

40. If we all threw our problems in a pile

and saw everyone else's, we'd
grab ours back.

41. Envy is a waste of time.
Accept what you already have not what you need.

42. The best is yet to come...

43. No matter how you feel,
get up, dress up and show up.

44. Yield.

45. Life isn't tied with a bow,
but it's still a gift."

Dealing with the Realms of Brain Fog

http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=3011&zoneid=67&utm_source=Newsletter+8-6-13&utm_campaign=Newsletter+8-6&utm_medium=email


The link above is about "cognitive issues" when it comes to Lupus and learning to cope with them... thought this was a great article, and may help to explain all of the "brain fog" and so forth we endure....

Medicare Advantage Plans, Medicare, The Government, SCREWING THE SICK PEOPLE OVER!

 I CANNOT even begin to say just how UPSET, READY TO THROW IN THE TOWEL, FORGET ALL OF THIS CRAP ENTIRE MESS!!! I THOUGHT I had REACHED MY LIMIT last week, but YESTERDAY TAKES THE CAKE FOR ME!!!! My Pain specialist feels I NEED a Epidural Steroid Injection. He thinks we MAY see me get RELIEF from this INTRACTABLE PAIN I have been in again for for more WEEKS!!!! So, I go in last Friday for the "formality" of an office visit so he can get the "approval" through Humana for the procedure. Well, I had not heard by yesterday and I knew he wanted to do this injection ASAP, which means FRIDAY this week when he does his procedures! I call them, and the woman that does all of that said they "submitted" the forms, and are talking back and forth to Humana about this. So, in other words, sounds like my doctors office is doing their job. But, since that have not gotten AN APPROVAL, I told her I WOULD CALL also to see if I could help rush things up a little. If I don't get it approved by TODAY (Wed.) then I won't be put on the schedule and will have to wait until a WEEK FROM FRIDAY to be in pain!!!! So I call Humana. I get the same old run a round, sent her, sent there, need to talk to "prior" authorizations, which is where I was supposed to be anyway. I get another woman in "Prior" Authorizations, that tells me, well, I need to send you over to our "Pain Prior Authorization 3RD PARTY UNIT!!!) Now I am trying in my mind to decide what the hell that is! I knew Humana had done some things with "pain management" but SUPPOSEDLY TO HELP PATIENTS! BULL SHI^%!! I get there, not knowing "who" I am talking to. And some snot nosed girl, who had not a compassionate bone in her body tells me, "Well, your authorization was received last Friday. Okay and.... WE "denied" it yesterday"!!!! WHAT! My doctor said nothing!!! THEN I ASK WHY??!!! By this time I am almost hysterical. I am standing here in more pain than I can even describe. I just got through with a dental appt I could NOT afford and I still am so hoarse I can barely speak, and trying to get well enough to even go to the dentist and have the injection, and here this woman is telling me THIS.... "Well, YOU have an IMPLANTED PAIN PUMP, thus YOU DO NOT NEED INJECTIONS for PAIN! YOU HAVE PAIN CONTROL!!! Now, by this time, I am ready to throw the phone across the room, I am so hoarse I cannot utter ONE word to this insanity, and then she begins her "speech" about APPEAL!!! HELL APPEAL??? I DO NOT HAVE WEEKS!!! to get these INJECTIONS! And what the hell does me having a pain pump due with my back possibly having compressed nerves and inflammation, bone spurs etc in it??? So, JUST AS I SAID THIS PAST WEEK, NOW it is where it it a POLITICAL GAME with PATIENTS LIVES! I finally did enough research to find this "3RD PARTY" that does Humana's "pain management". They are ORTHO-NET!!! BELIEVE ME HUMANA had that information BURIED!!! I had to do some digging to find all of this out, but they have some "outside" agency, that is nothing but a bunch of "pencil" pushers, how have NO CLUE and DO NOT CARE ABOUT WHETHER I DIE OR LIVE!!! That is the truth! These people are getting Humana A DOLLAR OR TWO "SAVED", yes saved all right, while WE AS PATIENTS have to SUFFER THROUGH THEIR PENNY PINCHING GREED!! THIS is also part of 'OBAMA CARE"!!! THIS is WHY I was saying about the PETITION, WE HAVE GOT TO STOP THIS AT CONGRESS!!! Between all of the bickering and sitting and DOING NOTHING! THEY HAVE SCREWED US FOR SURE!!! I cannot say just how upset I am! As you can see I only slept about 3 hours and there is no way I can CONTINUE TO LIVE LIKE THIS!!! My "pain pump" is NOT for ACUTE pain, or NEW PAIN like a compression fracture. It is like denying to give you blood pressure medication one day since your blood pressure seems to look normal. Or telling a diabetic, well right now your blood sugar is good, so you do NOT need insulin!!! Or saying, okay well, you only have 2 gallstones, so YOU can HANG on until there are more!! I know it sounds insane, but THINK OF ALL THE WAYS this EFFECTS NOT JUST ME BUT YOU!!! I AM BEYOND the place of GIVING UP!!! I am way PAST THE TEARS, THE BEING PISSED, ETC.... I am just going to sit on my sofa, AND WITHER AWAY IN PAIN...NO MORE... I CANNOT TAKE NOT ONE MORE DAY OR ONE MORE PERSON WHO DOES NOT KNOW ME, telling me oh, you are all right you have a "pain pump"... I have had it.... THEY HAVE WON!!!!

 THIS is MY LETTER below to the President, the Senate, the House, The Head over Human Services, and anyone else that will read, including the Humana insurance bunch. 


Well as someone who has suffered way more than I should ever have to, I am here to say, that any more "cuts", any more "changes to codes" or more "prior authorizations, or NOT paying the GOOD DOCTORS, so they STOP SEEING MEDICARE PATIENTS (ie especially MEDICARE ADVANTAGE PAYMENTS), will have the entire NATION SEEING PEOPLE IN THE STREETS, writhing in pain, and ready to just say FINE WE GIVE UP! Forget OUR "quality" of life! Forget YOUR CITIZENS being ABLE TO LIVE NORMAL LIVES! This is bringing our doctors and us as patients to OUR KNEES, taking away WHAT IS LIFE SAVING for MANY OF US! I have endured MORE PAIN in my life than ANYONE should have to! I have chronic illnesses that CAUSE PAIN! Lupus, Rheumatoid Arthritis, Degenerative Joint and DISC disease, 2, yes TWO Heart attacks (one due to pain possibly), Multiple Joint REPLACEMENTS, Kidney stones, migraines, Peripheral Neuropathy, Osteoporosis (which is SEVERE) and possibly causing my spine in places to have compression fractures, CHRONIC DOUBLE vision, tarsus tunnel, both of my THUMBS are WORN and Degenerated so badly they need replacement, like I ALREADY have in both KNEES and a RIGHT SHOULDER, now developing HIP pain, Lower back pain, stiffness, swelling, and my CERVICAL SPINE just had 4 LEVEL REPLACEMENT because it was so badly degenerated. ! I could GO ON! There is more. To Think, about 10 YEARS AGO, I was  "NORMAL, working Mom, Wife and Daughter. I have had health issues ALL my LIFE, but when the LUPUS AND RA decided to "knock on my Door", MY ENTIRE LIFE changed overnight! I went from working, to have to completely stop. All of the heart issues, the joint issues, the ongoing migraines, and all of the "symptoms" that were going along due to "Lupus and RA" were taking their toll. I did NOT get DIAGNOSED until 10 YEARS ago with WHY my body was falling apart! I had my FIRST HEART ATTACK at the AGE 40! AND I am an avid exerciser daily, I eat extremely healthy, I watch every pound, I am the weight I am supposed to be, I Do NOT drink, I do not party, I DO NOT do any of the things that would be a factor in my "health problems". I was a 5 MILE A DAY WALKER, for years and years! I rarely eat "beef, pork, etc", and eat salads, veggies, fruits, fish, chicken, and stay away from fat, carbs, and high calories. So, thus the surprise when I woke up alone 20 miles away from any hospital or even ambulance for that matter, and DROVE MYSELF to the ER that morning! Good thing I did! That was only about 6 weeks before the day I turned 41!!!! As I began to have more and more pain, stiffness, fatigue, unexplained joint issues that called for surgery, blood abnormalities, more and more PAIN, that even was so bad, my doctor had to IMPLANT A PAIN PUMP so I can have enough relief. There is NO WAY to control MY pain without it! IT is totally intractable! But, this PUMP does NOT RID ME of ALL PAIN! If something "breaks", like a hip deteriorate, or I have a compression fracture of the spine due to the osteoporosis, the "Pump" does NOT completely relief that type of pain. In fact it is NOT relief but SOME of the pain! It gives ME BACK, a TOLERABLE LEVEL so I can have some QUALITY OF LIFE! WITHOUT IT, or with more ACUTE PAIN, then I am completely WITHOUT an NORMAL LIFE! I would be confined to a bed or sofa, and not be able to to anything, but probably scream in INTRACTABLE PAIN! There are reasons for pain, that even our doctors DO NOT KNOW YET!  So, now you have a little background of just me, and I see hundreds, thousands, like me that have the same issues, some even worse than myself! They are dealing with exactly what I am. My "Medicare Advantage Plan" HAD been OKAY! UNTIL JANUARY 1ST 2014!!! When the “government” decided to take MEDICARE, then PICK AND CHOOSE,  some of the CHANGES from "Obamacare", it totally put US on the WRONG SIDE of the table! Since January 1, 2013, I have FOUGHT to get every CLAIM PAID, due to this "NEW SYSTEM" that costs thousands of dollars at the doctors and hospitals. It is such a MESS, EVERY claim myself or my Mom (she is 80 and bless her heart, she takes care of me rather than how it should be ME helping HER!) I have to FIGHT the doctors, the hospitals, the entire medical scene, along with my MEDICARE ADVANTAGE PLAN! I have DOCTORS telling me I had better FIND SOMEONE ELSE, because THEY ARE GOING TO QUIT TAKING these PLANS and that they may not be able to even AFFORD TO SEE MEDICARE patients NEXT YEAR (2014)!!! These are experienced, well trained, incredible physicians that have "HELD" my body together, with their care! If If were no for them, I probably would NOT be here today. I almost died in 2010! Due to the Lupus and many complications, along with my 2ND HEART ATTACK while in the HOSPITAL, I almost died! Now (as of (July/August 2013) I NEED a special EPIDURAL LUMBAR INJECTION in my spine! I have once again ACUTELY began to have INTRACTABLE PAIN in my LOWER BACK, MY HIPS down into both FEET!!!  It feels like someone is pouring HOT LAVA right DOWN my INNER BONES in both legs, from just above my HIPS down to the BOTTOMS of my FEET! I have been "ENDURING" this for WEEKS, and the doctors are doing all they can to FIND the problem and FIX IT! NO PAIN PUMP will STOP ACUTE PAIN or pain from something "broken" that needs to be repaired! IT is for chronic, long term pain. But it will NOT get rid of acute swelling, a compressed nerve, a worn out joint, and so forth! LAST WEEK, my Pain Specialist Physician (who already has the CT, the EMG the NCS) and "tests' to show nerve issues, damage and deterioration to my lumbar spine in which I NEED an INJECTION to first of all SEE IF it WILL HELP with swelling, inflammation and pain! Plus it can tell HIM MORE about what HE needs to do, to FIX THE PROBLEM! His staff as always send the proper RED TAPE PAPERWORK, into my (Medicare Advantage Plan for “APPROVAL”. Well, they DENIED the AUTHORIZATION!!! How CRAZY is that!!! NOW due to all the CHANGES I in these ADVANTAGE plans and MEDICARE, my MAP went to a "3RD PARTY" who does THEIR PAIN PAPERWORK! Which by the way NO ONE told myself or anyone I know about this "change" in how our claims are processed! So, this "3rd party" said "DUE to me having a PAIN PUMP" implanted”I did NOT NEED the INJECTIONS!!! That is total insanity! Who is there, working on pain patients authorizations and claims??? They are KNOW NOTHING about PAIN MANAGEMENT. IF they did, then they would KNOW ONE does NOT have A THING TO DO with the other!!!??? Just because I have a "pain medication pump" doe NOT mean it will just TAKE EVERY PAIN AWAY! If my hip, back, thumbs, feet, are 'damaged" and "worn" that type of pain has to be "fixed" in order for relief! If a NERVE is COMPRESSED, NO AMOUNT of PAIN medication will "release" and relieve pain from that NERVE!! That is like telling a diabetic, well your blood sugar is good today, we are NOT giving you any INSULIN!!! OR someone has a CAVITY and it is in the NERVE, and telling them WELL the PAIN PUMP will HANDLE IT, so we can't do anything but let you KEEP THE TOOTH! I APOLOGIZE for all of the “Capitalization!” I just cannot even find the words to describe what I am enduring now. You are NOT AWARE of the PAST 5 WEEKS of what I have and still am ENDURING!! I am in CONSTANT, INTRACTABLE PAIN! I have NO QUALITY OF LIFE! I CANNOT enjoy my Summer, my yard, I cannot clean my home, cook, or go to the store by myself. I cannot even go to my doctors myself, my husband has to totally take care of me! I barely move off the sofa for the most part, because due to pain, stiffness, swelling and NOW I have a SEVERE LUPUS FLARE and also the RA is acting up, that the fatigue, the face rash, all of the horrible symptoms of Lupus are here due to me having to endure so much pain. I cannot SLEEP, I cannot sit long, stand long, walk long... My life has TOTALLY been TAKEN OVER due to possible more damage in my LUMBAR SPINE, HIPS, THUMBS AND FEET DUE TO the Lupus and RA!!! Some of those things may have to be “fixed”, for that type of PAIN to be relieved! THIS is not ONLY EFFECTING me! IT it taking its TOLL on my SPOUSE, my MOM (who I am supposed to be helping out), my 2 children, and all of those that love and care for me. They are worried out of their minds! My husband is having to try and "juggle" everything I can't do now within his own work as a Web Developer, Designer, Database consultant and so forth, so his clients are taken care of, while HE ALSO TRIES to take care of ME! I know beyond a shadow of a doubt I am NOT the ONLY one out there. I see it day after day, week after week, those like myself that are having the exact same issues, if not worse than myself! While you sit in Washington, rather than "taking care of your citizens", bickering, cutting, chopping up bills to "suit"  needs, YOU are “PLAYING POLITICS” with OUR HEALTH! WE, as those who VOTED you in, fully expect to be TAKEN CARE OF (Medicare is our money we invested for our older lives), NOT thrown "under the bus" and left to fall to pieces on the street! Why can you get your act together, quit bickering, stop putting other things in front of what is important to us, your constituents, and give SOME thought to how YOU would feel if this were YOUR MOM, YOU, or a loved one or friend? Would YOU rather some "pencil" pusher try to "save a buck" for an insurance company that is rich among the rich, as YOU or someone YOU LOVE is in INTRACTABLE PAIN, being told NO, you have this, that or the other, so NO, we do NOT think you NEED THIS! WHEN did IT GET, that the GOVERNMENT can TELL our DOCTORS what PATIENTS NEED??? I see it all the time... now medications, tests and so forth, our DOCTORS say WE NEED them. They have documentation to prove it! Yet, some STRANGER, that KNOWS NOTHING about ME, can just OVER RULE MY DOCTOR, and say NO, that patient does not need this!!! Again, how would you feel if it were you right now??? Or someone you love very much!!! I can bet YOU would be doing ALL YOU could to get SOMETHING DONE to HELP them!!! Now, I am NOT talking about doctors that are NOT legitimate, and do tests, etc.. for kickbacks etc. THOSE are NOT doctors to me, they are like vultures who need to be taken out of our system. They are ruining it for our GOOD physicians!!!!

I want to “THANK everyone” that “takes the TIME” to really READ this letter! It is extremely not only “critical” to my situation, I speak for MANY others out there, as also myself. As I said I hear it, I see it everyday from other patients, thus it is imperative that the system of Medicare, Health Care and Insurance are FIXED for us, as people, humans, flesh and blood. I would never wish this kind of pain on anyone at all, not even someone I did not really like… no one should ever have to go through this.