New Post - My Letter to Congress in Regard to Arthritis, Autoimmune Illnesses, Medicare, Advantage Plans, Medicaid & Just How We Lack All We need to have a "Quality of Life"

I just completed this email below. I've been working on it for what seems like weeks. Due to ALL of the doctors visits, Jim going to Rehab twice weekly, my visits with my dentist to get my dentures (which I am already having "flare" issues I think with the Lupus, Sjogren's and RA) & numerous other things that have had to be taken care of, I've had to write this in between all of that. Finally, this morning around 1:30am I woke up needing a drink of water. Not realizing my foot was so "asleep" I got up and immediately went to the floor, with a very "twisted" left ankle, that left me in tears. I tried to go back to bed, but there was no use. So, at 4 am I got up, and decided to finish the email, and try and get some things done on the computer and on line that have had to be put on the back burner due to all else going on.

I am sharing the email with you. I am also sending it to my own House Representative, and to several others in the Federal Government that I feel can and may try to do something to help not just myself but ALL of us. Here is the email. My hopes are that YOU will write your own and also email it. The Arthritis Foundation sent out a newsletter about 10 days ago asking for us to all send in our stories to the email address that will be listed below this one I sent....

Good Afternoon to All In Congressional Representatives,

First of All, I want to thank, House Energy and Commerce Committee Chairman Fred Upton (R-MI) and Rep. Diana DeGette (D-CO) recently who announced a bi-partisan initiative, called the “21st Century Cures: A Call to Action”. This will certainly help to shed some new light on chronic illnesses, and especially those new diseases and illnesses, that at this time, like many types of Arthritis, (Rheumatoid, Osteoarthritis & Juvenile to name a few), that have NO cure at the time, little known about “why” those who all of a sudden get the diseases, why others may not, what medications we need in the future to either put these illnesses into remission, OR CURE them…. even STOP them before they ever do the severe damage they do to all of us suffering daily dealing with ALL of this issues these horrid illnesses bring into our lives. I hope many of our other Congressional members will stand beside HECC Chairman Mr. Fred Upton and Representative Diana DeGette and help to make this “Call to Action” a huge success for the thousands and hundreds of thousands suffering from various forms of Arthritis and Autoimmune Illnesses.

I am an “Arthritis Patient", that suffers from several various forms of autoimmune arthritis, as well as osteoarthritis. My list of diseases, illnesses and syndromes; Lupus, Rheumatoid Arthritis (RA), Sjögren’s, Pernicious Anemia, along with many issues brought on by thee illnesses, such as a heart attack at 40, severe pain, swelling stiffness that all have consumed my quality of life at times so much, that I feel the diseases rule my daily living. At the age of 15 I had my 1st knee surgery. At that time, they knew little about Juvenile Arthritis (JA), and the experts really did not know much about RA, and all of the other arthritic and autoimmune illnesses here in our nation. So, I went for years from one physician to another, trying to find out why all of my joints were “falling apart”… by the time I was 40, I had already had a left elbow repaired, a left shoulder repaired both knees had surgery at least twice back them, plus all of the other “symptoms” that most doctors at the time “blew off” especially when it came to women. They for the most part thought if I woman complained about aches and pains, she was either nuts, a hypochondriac, was having “female” issues, or was depressed. That was the huge one. The answer from most doctors to a woman with “mysterious” health issues was to determine they are depressed and fill you full of anti-depressants that did nothing for the “physical issues” that overwhelmed you. Still I would hear, even with the severe migraine headaches I had, the weakness, & still other signs and symptoms that should have never been looked over, but taken seriously.

In 2009 I FINALLY began to get some “answers” that made sense. I was not nuts, depressed, making it up, had female issues etc…. I had an “autoimmune issues or issues” that were ruining not only my joints, but also causing he severe fatigue, all of the joints and surgeries I was having… including both knees completely replaced and my right shoulder had to be replaced, along with a 4 level cervical surgery, for degenerated disc disease, and now my thumbs, fingers, toes, and ankles are “eaten up” by RA.

I’ve jumped through hoops and hoops for a very long while over my medications for these diseases. When you have a serious illness, and medications come out that may “halt” or at least give you a huge percentage of reprieve, so your quality of life comes back & your doctor feels the medication is necessary, there should be NO ONE at an insurance company, or throughout Medicare to tell your doctor differently. These ridiculous amounts of forms, paperwork, having to be put through 4 or more medications that DO NOT work before the ONE that does can even be considered, makes for a patient becoming worse by the day, paperwork and red tape costing precious doctors time, insurance people who have no clue what the entire thing is all about, and it is a vicious cycle of “stuff” in order to finally either get the medication you NEED OR be turned down, which really is asinine. I have been through I cannot tell you how many “pre-authorizations”, sending medical records, my doctor having to fill out forms which they should not have to, talking for literally hours on the phone trying to get to ONE PERSON who can “fix” the problem… and on the computer sending emails, sending messages, and as I said, all the while suffering from these horrid diseases that each day wreck my joints and my body a bit more each day. Any type of “autoimmune arthritis” such as RA, effects NOT JUST the joints. They are “ systemic” in nature & can effect the heart, lungs, kidneys, your hearing, your eyesight, your memory, your blood, your stomach, intestines, and so on. Just about every part of the body can be effected by any type of autoimmune illness, and can reek havoc in just a short time without proper care.

One of my horrors with one of these “Autoimmune Arthritic” diseases is Sjögrens. This is just one that they do not know nearly enough about. The doctors know it effects the mucous  membranes, which we have all over our bodies. Our mouth, which is how saliva is formed. It keeps our eyes moist, our intestines, and many “linings” in our organs have these types of member in them. Without them, organs like the inside of the mouth, dries out so badly, you cannot even speak, swallow, and the worse cause horrendous “dental caries” and other issues! Yet, I was not informed of just how quickly and how badly my teeth might be effected. I brushed daily, tried my best to chew sugarless gum, sipped on green tea all day long, and used the special toothpastes and all of the “remedies” for dry mouth. Yet, about a year ago, all of a sudden one evening we were eating dinner, and an entire back of a molar just fell off in my mouth! Within the course of 3 weeks I had 3 more teeth with break off at the gum line, or a half of a tooth break off. Then suddenly almost every tooth had either a large cavity in it, OR would crumble off on the edges, and I knew I had to get assistance quickly because I was losing all of my teeth, and in a time frame that was not going to allow me to wait even a month or two.

So, I began trying to find an “Oral Surgeon” and/or an Oral Surgeon/Maxillary surgeon that would take my Medicare Advantage Plan “Humana Insurance”. Well, I have yet to find ONE dentist, oral surgeon, and so forth that will take my insurance, EVEN THOUGH this problem is caused from a physical ILLNESS, NOT just regular dental caries. This is a serious matter, that I spent weeks and weeks calling dental offices, and researching online, first of all, WHAT I truly needed done, and a Dental Doctor that could do the procedure, and try to help me get some of it paid for by my Medicare Advantage Plan. I literally spent days and days sending emails, making phone calls, sending messages to dentists offices, all to no avail. In other words, (unless you have had to price these types of dentures called “mini implants”) I was going to have to cough up anywhere from $8,000.00 to some the charge $16,000.00! Now these are the dentists that have been through enough “training” to do certain types of “oral surgeries”, not the Physician Dentists, the true Oral and Maxillary Surgeons MD. I am sure when you look at the fact they usually put you under complete anesthetic in an operating room, and have several nurses and so on assisting them, they charge I would say $25,000.00 and UP! By the time you pay his services, a anesthesia doctor, all of the charges for an “outpatient” stay at a day surgery or hospital setting, I know from the extensive surgeries I’ve had due to all of these horrid, life altering chronic illnesses, it certainly would be a great deal more than $8,000.00. And “they” MAY be able to get my Medicare Advantage Plan to “pay”… with some pushing, pulling, red tape, & lots of time before I could have anything done, BUT the insurance ONLY PAYS 60% of any type of “dental” procedure no matter if the problem has been caused by an Illness! So, that means by the time you added up all of those “extra’s” involved where I would have to travel back and forth from Dallas many times to get it all done (so far I have had about 5 appointments to do all of this, and still have another at least 3 to go)… thus you are looking at the cost of gas, parking, and what if something happened after hours or a weekend? Like a dry socket, of which I had one, and also the start of an infection. But, I am within 5 minutes of my dentist/oral surgeon, thus I can be in there and getting care within an hour or two. And I am sure if something happened over the weekend that called for attention, he would go to the office and see me. Now, as it is, after an almost “deadly” car accident that my husband (who more or less has been my “caretaker” now for almost 10 years) last March. An 18-wheel tractor trailer “ran over” him from the back. Aa of now he is barely able to walk, much less drive anywhere. So, I have only myself to depend upon. My 2 children live 8 or more hours away, and my Mom, who I am “watching after” and helping out at times, can barely drive to the grocery store and back home that is about 10 blocks or less, thus there is NO way I could have been going to Dallas, being “put under” and driving myself home.

This part of my story only touches the “iceberg” of what I’ve had to endure. Lupus, RA, Sjögren’s, Raynaud’s, Osteoarthritis, Migraines, two heart attacks, one at the age of 40 (now they think the Lupus may have caused them, but that was years ago before I was diagnosed), plus all of the complications that go along with these illnesses. They can “attack” just about any part of the body, from the brain, to kidneys, to your heart and lungs, blood vessels, skin, and that list just goes on and on. As I have come to find out also, once they “finally diagnose” you, more than likely you have “several AI’s, causing the problems. (AI- Autoimmune diseases). We NEED HELP! WE NEED more RESEARCH, TRAINED PHYSICIANS ON THESE ILLNESSES, including DENTISTS, MORE MEDICATIONS, TO BE DIAGNOSED EARLY BEFORE all of your body is falling apart from them. We need to find out what causes these chronic illnesses, whether heredity, or caused by something later in life. The number of people (WOMEN rank MUCH HIGHER in getting any of these than men), grows each day. Some of us, like myself, may have been ill for many years, 10 years, or more BEFORE they finally get a doctor who takes the time to sit down, and put together the pieces of the puzzle of someone with one or more of these illnesses. But, doctors are overwhelmed, underpaid, and just do not have the time, even as specialists, like Rheumatologists, to really EXAMINE a patient, and there past medical issues to find out their patient is ill with a disease that could have been there for a decade or more, By the time mine were found out, I had already had both knees replaced (after several arthroscopic surgeries), an elbow surgery, arthroscopic surgery on both shoulders, my right one now replaced completely. I have osteoporosis, and mine is “severe” in range. I have the bones of someone 80 plus years old.

This past 6 weeks have been especially an extremely fought time for me. Due to the Sjogren’s literally eating away from the inside out, and no one knowing it until it was too late, I have had to endure having two sets of 5 at a time teeth pulled, much of it difficult due to the teeth being so brittle, thus difficult to excise, then after going through a couple of times trying to make sure the complete regular dentures will fit right for now, I went through a couple of visits for that. I finally got my “new teeth” just this past week on August 12th, 2014. Yet, I still had 11 teeth that had to be pulled all at once, then my gums were sutured shut, after my dentist had to do some “filing” to my bone so the dentures will fit properly, and then my gums were sutured closed in the front, top and bottom. I did then immediately get my dentures put is, but of course with extremely swollen gums, suturing and a great deal of bruising due to all of the local anesthetic being put in the syringes, then the extracting in itself, my gums developed some very sore spots, and even several mouth ulcers. Those I get with Sjogren’s to my dismay. I HAVE to be able to wear these teeth, since I have none of my own now. And I cannot have them “modified” to be held in with the “mini implants” until the bone is completely healed from where all of the teeth were extracted first. This process could take 90 to maybe even 120 days. My problem is trying to have my own mouth accept them, due to the issues of ulcers, and other problems I develop in my mouth due to the Sjogren’s. Then even at that there is already over $4,000.00 paid all of my pocket to get this far with the dentures. Then in another 90-120 days, there will be another $1200.00 (what was “left off accidentally the original treatment plan to pull all of the 11 teeth left) that we were not expecting, then another over $3,000.00 just to have those four “mini-implant posts” put into place in my gums, then the dentures modified to fit properly on those posts. If I could wear the dentures as they are now, I may not have to incur the last $3,000.00 plus BUT I can already see since I am suffering from ulcers, (probably a bad flare of the Lupus, Sjogren’s, and RA) from all of the trauma to getting this far with the dentures, and all of the other very stressful things going on in my life at the present, it has brought a bad flaring up of the autoimmune illness. When this happens, I can have everything from those types of very painful mouth issues, severe Lupus Headaches, severe fatigue, swelling of my joints, the “mylar rash” on my face, & numerous other symptoms that are from these illnesses. It is shameful the amount of time, the loss of quality of life I have sufferer and continue to suffer, the lack of enough research, medication, doctors, and other medical items that may help to put these illnesses in permanent remission, or not get them at all, then I have to fight “tooth and nail” (no pun intended) to get my Medicare Advantage Plan to pay a dime, especially when it comes to anything to do with the huge burden of expense of all that I have endured with my mouth, and the Sjogren’s that causes it. I want to see this change, for myself, and also for many others, some I have met recently that are going through the same situation that I am. Most of them like myself, really taking on a very heavy financial burden because they cannot get Medicare or a Medicare Advantage Plan to cover any of this even though it is a “medical” problem, not dental per se. For some $9,880.00 plus (because I already had several teeth that rotted down to the gum and had to be pulled before the procedure of getting my mouth ready for the dentures) may not think that is a great sum some of money. BUT, someone living on Social Security Disability, and the spouse (my husband) that had been my “caretaker” for the most part, then he was in a severe, almost life taking vehicle accident on March 26th, 2014 and spent almost 4 months in the hospital, with many complicated injuries including his spinal cord. Thus now he had massive health needs, puts even more of a burden on my life and on his that I an barely begin to tell about. He was hit from behind by an 18 wheel tractor trailer that day, and rushed to Baylor Emergency in Dallas, where he was operated on for basically a “broken back”, 7 broken ribs, and the list of injuries goes on and on. So, us trying to take care of one another is a daily struggle. Again we begin all over to try and find proper physicians for him through the system, and much like I have come to find out, many doctors are refusing to take any Medicaid patient, and now even worse, are refusing to take Medicare patients, due to not getting paid properly, and in a reasonable time length.

I would like to see for one Medicare or these Medicare Advantage plans cover MORE on something such as Sjogren’s, that is not “dental” in nature, but caused by a physical illness. I would also ask that rather than put up a road block, where the patient cannot get through to anyone at Medicare to explain the problems, or be able to get our doctors and dentists to be able to help get these types of things paid for just as any other type of chronic illness. I cannot express enough the huge amount of emotional, physical, mental, and financial anguish I have been through, and still have more to go just to be able to eat. But, my teeth are what can sustain my life, and without them, I am at risk for all types of other physical and emotional issues.

I realize we have many people in our nation, and around the globe in need of all types of medical attention. Yet, in a great nation such as the United States, our people should not have to bear such a hardship, and not have anywhere to turn to get any type of financial assistance with something so critical as your teeth. I did NOT cause this, the disease did.

I ask you to see if there is a way to change this system, give help to get things like this paid for or at least a good portion paid for by Medicare and/or a Medicare Advantage Plan. I ask you to get the funds out there to get more specialists, so we have enough doctors to are qualified and trained, that have went through a major study of these life altering illnesses, and can give us back our quality of life, and find these illnesses and have the ability to treat them before 5, 10, of more years go by and the damage has already been done.

I feel I do my part by voting, by participating as a volunteer, activist, and Ambassador for several organizations that are trying to change the face of Arthritis, Autoimmune Diseases, and all of the other medical problems that come with them, I sign petitions, I send letters, make calls, and send emails. I am somewhat limited to do what I can medically and monetarily, but in the ways I can try to stand up and make a difference, I give it my all. Now, I ask you do to the same. Stand up for all of us that want our quality of life back, to be able to do the simple things in life like eat, do a hobby, work in a garden, or whatever you may want to do, by giving the way with funds, research and voting for bills that will reduce the terrible burden off of those like myself.

Thank you for your time and for listening. I hope my “one” voice can help to make a difference.

"See NEWS" Page for the New Post! Exciting News for All Wanting to Speak To Your Congress Members!

BE SURE TO SEE THE LATEST IN NEWS TODAY!!! I JUST POSTED UNDER "NEWS" ABOUT THE UPCOMING CONGRESSIONAL BREAK... SO THEY MAY BE AVAILABLE TO YOU  - WE MUST SPEAK OUT TO GET THINGS DONE... RHIA

Arthritis Foundation Capitol Hill Summit - Have to "brag" a Bit"

This is .pdf page From one of our Arthritis Foundation! Since it had Chris, Rep Barton and I in it, I just had to share! :)

Bio-Medical Research, Congress, and Lupus Research Institute

 

Urge Your Senator to Co-sponsor Bill Supporting Biomedical Research at the National Institutes of Health

To continue our national commitment to research and fighting lupus and other diseases, we ask U.S. Senators to co-sponsor and support ''Accelerating Biomedical Research Act"introduced by Senator Tom Harkin (D-IA) July 24, 2014.  The Bill aims to prioritize funding for the National Institutes of Health to discover treatments and cures, maintain global leadership in medical innovation, and to provide consistent, reliable source for biomedical research. Lately, the NIH budget has been flat lined because of the budget battles in Washington. We need more federal funding for biomedical research on all diseases, especially lupus. The much-needed advances in lupus treatment of tomorrow depend on investment in NIH-funded research today.

Click the button below to write your legislator or click here to call your legislator.

 

http://www.congressweb.com/LRI/12

 

We Advocate on the Hill. Each year the LRI mobilizes representatives from the National Coalition to visit legislators on behalf of the lupus community throughout the country.  Learn how you can be a Virtual Advocate without ever leaving home!

Asking for YOUR Thoughts and Prayers for This is SUCH A Critical Week-May I be Well Enough to be in DC to tell my Senators and Representative my Story

This is not just for myself, but it is for ALL OF US WITH THESE AUTOIMMUNE ARTHRITIC ILLNESSES AND OTHER CHRONIC AUTOIMMUNE ILLNESSES AND CHRONIC PAIN, FM, AND SO MY MORE... SO PLEASE KEEP ME AND LIFT ME UP IF YOU WILL!

Well Folks this is my LAST WEEK to be PREPARED to go to Washington DC NEXT MONDAY!!! Please keep me in your thoughts and prayers this week. In one week, I am supposed to be boarding a plane to fly to Washington DC to be in front of my Senators and Representative and tell them "my story" about my illnesses and how they have dramatically effected my life.... I have been so ill, it has been touch and go for me, we don't know if I will be well enough to go, and a few "kinks" worked out of being gone so long (my husband is supposed to fly in on Wed. when I am through and we are supposed to go see his Step-Mom that he had not seen in over 11 years and I have never met her)... so this week is my last week for everything to "fall" into place, and for me to be able to get on that plane... and be well enough, and everything 'worked" out so I can go... this is a critical point for ALL of us! This is sponsored by the Arthritis Foundation! So all I get to say and do effects ALL of us... with chronic illnesses... please say prayers that as I said I am well enough all here at home is worked out where I can get on that plane next Monday morningI appreciate all of the kindness, prayers, love and support I have received from all of you, and everyone in the other groups, that have been there to pray for me about my health, and all that life has sometimes pitched at me! You are all there to CHEER me on, when things go well, and there to support me when things are on the rocky cliffs of all of these autoimmune illnesses and the way that they have "altered" my life in so many ways, keeping me from being and doing all the things I want to do in life... I know this is one bunch of incredible people that are here for me!!!! Again this is SO CRITICAL and a dream of mine to be able to tell those on Capitol Hill how not just myself but ALL of us suffering from the pain, the horrible things we go through, how our quality of life is non-existent, thus me being there is like me standing i front of the White house for ALL of US!!! Please say an extra prayer this week, for I so need all of the extra support I can get.... Hugs to all.. Rhia 

This will help you understand why this is so important, please take a moment to go to this link and see what I will be doing there in D.C. at this time next week!

The Arthritis Foundation Advocacy Summit of 2014

Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)

Being Caught in an Upheaval Between An Insurance Company, A Physician's Office, My Own Autoimmune "Flaring" Body, A Pharmacy, and What to Trust? Myself, My Doctor... Any of us... we are all susceptible to "Medical Mistakes"... And How do We Avoid those? Or Can We?

I will always be one of the first to admit, "no one" is perfect. We don't live in a "perfect world". Everyone of us are human beings. It matters not whether we are highly educated professionals, or a Mom or home maker. Whether you are the President of the United States, a banker, lawyer, and of course a DOCTOR, even though we want to "think" these people are more "immune" to errors, and yes they should be, we live in a "too fast" paced world, that for the most part offers "little" time to try and "double check" every thing we do in a day's time. 

I will also say that for the most part, I "trust" my physicians. If I didn't then I would and I have moved on before. If you "lose faith" in someone whether it be your physician, a banker, or anyone you do business with, must confide in, or within the very people that you have to rely on to sustain daily life necesseties, where do you turn to, and where do you go from there?

 I was so totally hopeful that the new year would bring "hope", a new vision, less symptoms, more ability to help make changes in this system of errors when it comes to ALL of the horrid evils of autoimmune illnesses, medications, insurance, or lack thereof, doctors, pharmacies, and the entire realm of what the hell is happening to cause such grief with those that seem to just NOT care about patients, about their own people, and how we are supposed to try and "cope"? Each day seems to be worse, not better. Things seems to go from hoping it will be "less complicated", to more red tape, and less reasoning with any human beings when it comes to the health rationalizations of life. Never have I seen such a lack of regard for "humans" from the medical world. I sound like I am on one of those "rampages". But, it is very difficult NOT to feel that way, when each place you turn to, each physician, each pharamcy, every phone call to your insurance company, every email you send... each medication, every step you make, turns around to slap you in the face, and make you wonder is any of the struggle worth it? I cannot possibly be the only one feeling the overwhelming stress of things getting worse when it comes to our health, and our health care workers. More and more I see doctors who are supposed to have taken an oath to "help humans", turn their heads and watch people become more ill. When you are reading daily, that those in dire need of medications such as the biologics trying to cope with THOUSANDS of Dollars of out of pocket costs due to this once again "tier system" of how we are "told" we can have medications, it makes me literally sick! Who, and mostly NONE of us with chronic illnesses can afford to pay $5,000.00 a MONTH out of pocket to get the one medication that may help keep you able to just live your life?  It is total insanity. I realize I am NOT the only one! That makes it even more difficult to deal with. Day after day, month after month, rather than watch "head way" being made, what we see is a government that absolutely DOES NOT care about their own people! Anyone that can take office, and turn their backs, to line their own pockets, in the name of cutting benefits so much that in 2015 Medicare Advantage Plans will CUT paying physicians/medical professionals (the "term" used in the original article was "insurers". That is so it does NOT sound like it is our doctors/medical professionals that are getting cut - another "loop hole for them) 20%! How can I (WE) even begin to rely on that kind of nonsense? What happened to taking care of your own people? It is very obvious greed, greed, greed and more greed fills our nation and our world. I was going to put this up on another "friends" feed, but there is no reason I should "push" my own issues off on those that may not feel the same way. The entire dilemma that has prevailed over my life in the past 3 months, is one that sounds like it belongs in a tale of horrors. Even when I "KNOW" for a fact everything I am "saying" is true; as I go back to either read it or email the ordeal to a friend, it is so hard for me to say "yes" this is really how it is! Where did we as a nation and world go so horribly wrong? When did it get to where "money and power" rule over it all? And where do you really find answers? I of all people, have always been able to "stand" within the power of faith and hope. I don't pretend to "cram" my own beliefs down anyone else's throat. Never have, never will. Everyone has their own personal and private feelings when it comes to how they view hope, faith and all of what might be considered "religious" in nature. But, the problem I feel is the "lack" of it all. There is little hope left. Medically speaking, is just one issue. Turn on your news every day. What do you hear that gives you any kind of true hope? Because we are finally backing out of wars, where we probably may have stayed out of them in the first place? Thousands that die daily due to lack of water, lack of food... and now we face yet another HIGHER scheme of things on the very thing that sustains us? FOOD!? Why? Because we lack water, we are facing drought circumstances that we have never seen in our own country since before the 1800's.... how can our "elected" officials sit around on Capitol Hill and justify the ridiculous insanity of "cutting" benefits for those that can barely afford to buy decent food to sustain us, much less "pay" for medications that although should be considered a "necessity" become things that are more a luxury. 

Those of us on a "regular salary", or disability, or making minimum wages... even those making a bit better salary, cannot possibly afford to pay THOUSANDS, even HUNDREDS of DOLLARS a month out of pocket for medications! I often wonder whose fingers are in whose pockets? If you could be one of these "minute" insignificant "bugging" devices that could fit in a clock on a wall, or under a lamp in some of our places in government, in our local doctor offices, within the pharmaceutical companies in the world, in the very places that things such as "lack of caring" goes on, how shocked would we be? How shocked would you be, just like a dear friend of mine told yesterday on her FB page. Her doctor wants her to have a "special type" of MRI on her heart. Yet, when the doctor calls the order in at the hospital, he is told, "that procedure" can't be done there. Now you tell me, if he is a doctor and he is that has been dealing with a hospital, outpatient or whatever type of facility in the same area for any length of time, he knows "what procedures" that place can do or can't do. Doctors are around for the most part long enough to know whether they need to send a patient to a "special facility" for a specialized type of MRI on the heart or not. SO, why all of a sudden does he get this type of information, that he must relay right there to his patient? He has to tell her that "I'm sorry"... for "some" reason, I can't get it done at that hospital? Then do they fully expect for us to say, Oh, Okay, well, if you find some place that it can be done, give me a call? How ridiculous does that sound? 

Just as ridiculous as a NURSE in my own PCP office, that has been seeing me now for well over 4 years, "hide" and NOT intervene as that nurse basically is allowed along with a "PA" there to tell my husband "well, if you don't like my care, take "her" meaning me, to the ER! What the hell kind of doctor is that? Talk about losing confidence in your physician! Then he is not even courteous enough to "check" on the situation and try and find out what the hell went wrong, and why the hell would ANY "PA" get her "feathers so ruffled" due to a patient and her spouse being concerned and just questioning why a certain treatment would be given, when there is a very strong chance that very type of medication is exactly what got me in the situation I am IN in the first place? If a doctor, or PA, or nurse, is that big of a "chicken" and they are NOT willing to try and get hold of the matter to straighten it out, and thus TAKE CARE OF THEIR PATIENT, who should have been NUMBER ONE, then how the hell do you trust any of them? If this had just been one incident, or a "new doctor" or someone "not familiar" with my complex case, I "may have" been able to justify a portion of their lack of brain power and intelligence. But, when you cannot even have your physician call you, return a call from you, trying to find out what the heck is going on, why would I bother to put my life in this medical "so called" professional's hands? 

I've written an email to a friend of mine explaining the total amount of crap I went through over the past about 7 days! I am going to post most of it here, and I know you are going to think I have to be making this story up! But, BEFORE I get more into that, let me tell you what just happened! Here it is BEFORE 8AM in the morning. My phone rings, and guess what? It is from LEXINGTON KY! NO NAME on caller ID, just that town name. A "woman" announces she is from "Humana" and asks for my Humana ID number!.... in the first place, it is BEFORE 8 AM CENTRAL TIME! IN THE 2ND PLACE, WHY WOULD I (I did NOT call them) give out my insurance ID number to someone I have NO idea is, what they want, and why they would call ME at this time of the morning? I told her I WOULD NOT give out that information, and in the 2nd place I AM SICK! Where were they this past two weeks when I tried to get them on the phone and get my ENBREL??? You sure can believe I jumped through 50 hoops to get anyone on the phone, it took them 10 days or longer to even get medication to me that I should have had 7 weeks ago or more. I probably WOULD NOT BE SICK, if HUMANA would have DONE THEIR JOB! Now, I hang up, and I call THEM BACK! Guess what they tell me... THEIR OFFICE IS CLOSED! NOW how can "they be closed" when they just called me and asked me for my ID number? Ever since I FINALLY GOT MY ENBREL LAST THURSDAY, I have had A PHONE CALL EVERY DAY SINCE FROM THEIR PHARMACY wanting to TELL ME HOW THEIR NEW SERVICES COULD HELP ME!!! THEY COULD FREAKING HELP ME BY DOING THEIR DAMNED JOB, GETTING ME my medications and not delaying me to the point that I am almost to the place of being ill enough to go to the hospital! THIS is the very KIND OF CRAP THAT I HAVE HAD MORE THAN ENOUGH OF! 

How funny it is WHEN I NEED THEM... forget it... you cannot get anything off of their website (although they always say go there), you can't get anyone on the phone, but boy they surely can call you day, night and weekend to tell YOU about HOW THEY CAN HELP YOU!!! 

Now, back to the Other issue at hand.... I've told most of the story... from this, I did NOT get my Rituxan.... due to HUMANA NOT wanting to pay at they should... the entire 'BIOLOGIC" ISSUE. So, when I am severely ill, with flares 6, 7, 8 weeks later, at my doctors office... and the PA decides even though I say nothing about any type of "infection"As far as I was concerned showed no and had no signs of a "sinus infection. Yet, she insists on giving me an antibiotic, after I am already very immune compromised due to NOT having my medication, having 2 flares, and she gives me of all things "Omnicef"! Now I am not sure how many of you check out medications. I am sure for the most part, all of us, or the majority of us with these autoimmune issues DO watch what we are given as far as medications. In the first place, many of our "autoimmune medications" do NOT mix well with other meds. It can cause all types of complications, thus we are probably for the most part pretty good about double checking medications, especially "new" ones we are given. BUT, as I say, what about those that are elderly, or they don't have access to look up medications, or they just "trust" what their doctors say, and take the medications. We are supposed to be "pro-active" about our own health. Yet, as I have found out, being pro-active with some physicians is just like stabbing yourself in the foot. They HATE patients that are educated! They DO NOT want to be questioned, and they fully expect US to believe them hook, line and sinker, without any disagreement. 

Well, even though I did NOT think I had this "sinus infection" I began the antibiotics a week ago, tomorrow. I took 2 that day, and Friday morning I took one. By Friday evening, something was just not right. I could tell my stomach/intestines/colon were not "happy". Of course antibiotics, many of them can upset your stomach. Sometimes if you "eat" with them it is better, but sometimes you are NOT supposed to eat with them. This happened to have been one that still I was quite disturbed over getting. Without being extremely ill with signs of an infection, it still did not seem right I would be given such a broad spectrum, high powered medication. I even mentioned that it had been YEARS since I was given these type of meds. The ONLY time I've taken them is when I go to the dentist and I am having work done. He prescribes "2" for me to take one hour before I go in for dental work. He does that due to me having "knee implants", shoulder implant etc.... Dental work "can" lead to an infection sometimes of those types of implants. BUT mine have been in place long enough now, that really it is not a huge concern. In fact the other dentist that does other dental work on my teeth, says that taking those now is kind of "old school". He does not even prescribe them, unless the implants are very new, less than a year old, or there is major dental work, that could possibly lead to a greater chance of infection. So, even with two dentists right here in town, there are two totally different opinions about giving this even when it could be "slightly necessary". Well, within 24 hours of taking these antibiotics, I began to have what I consider not just slight diarherra, but what I consider a type of "colitis' symptom, due to the medication 'Killing out" all of the needed bacteria in the colon. I went through this in 2010. After several abdominal surgeries, due to an issue with my gall bladder, and a collapsed bile duct, that landed me in the Methodist Hospital in Dallas for over 6 weeks... I got this type of colitis. I will NOT go into the gory details of it all, but I will tell you that I had NO CONTROL over it. I literally woke up wrapped in blankets, cold, and was covered from head to toe with diarrhea... this happened night after night... and I was so ill, I could barely even stand... the nurses would try and put me in the shower, half cold water, and had to clean me up, head to toe, several times a night (and I was NOT eating anything)..I was totally being fed with an IV line...

Well, that experience all came rushing back into my head once I realized that the antibiotic I had been put on is one of the worst for causing this type of colitis.....

Here is more information on it:   http://www.mayoclinic.org/diseases-conditions/antibiotic-associated-diarrhea/basics/definition/con-20023556

this is just one article. There is LOTS more, just do a Google Search if you would like to found out more....

Needless to say, I was very FAMILIAR with the signs and symptoms of this potentially can be "deadly" type of colitis.  It is NOT something to mess around with, especially if you already have a severely compromised immune system. At this time, mine is certainly severely compromised. So, as you or anyone in my situation would do, of course you are going to "question" why would you try and put me on yet another "same family" of antibiotics that COULD be causing this? Here they are as  I have in a redundant way said trying to treat me for a "sinus" infection, and I am worried about this type of bacterial colitis! thus coming back to me on the phone Monday morning and saying the PA is calling in "Keflex" was not what I expected to hear at all. I thought I was going to hear at the very least they would put me on Flagyl or Vancomycin, and then also possibly do the "test" to see if I indeed had this type of bacterial colitis. Never did I expect that she would in an almost flipant manner tell me that "the PA went to school, and SHE knows better"! Well, ummmm let's see here... did I excuse anyone of NOT knowing their job? NO what I was "questioning" was "what she was treating me for and why?"... Are you giving me "more antibiotics" thinking okay well the "sinus infection"??? Yes, again, the nurse NOT taking the message stating THE PATIENT IS CONCERNED ABOUT whether she has a colon problem, a stomach bug problem, or is it antibiotics causing this.... not one word of "can we try to see who is asking what" and "why" one person in an entire office can't put two plus two together to get a proper message through.

Now comes another issue in all of this. For six WEEKS, I have non-stop tried to get through to Humana about the Rituxan, what the deal is, why they are NOT paying as they said they would.... and  you can bet I heard everything but the right answer. Most of the time, I was either speaking with someone who has NO CLUE about a "code", about it being used for RA, or even what it was used for. After I finally drove the infusion center, and my Rheumatologist's office nuts trying to get SOME TYPE OF BIOLOGIC to take.... knowing that each day that passed meant me having more and more change of a severe flare, I worked my fingers to the bone trying to get medication, it was days and days and days and more days of waiting, paperwork, more waiting, more paperwork.... and then FINALLY last Thursday it comes in. I take it about the same time I the appointment to try and get the flare under control, before it got worse.

NOW, every freaking day, sometimes twice a day, and like this morning BEFORE 8AM my time, Humana (wow they really exist) CALLS ME! They leave messages, they want to talk to me this morning BEFORE 8AM, and the "woman" asks for my ID number before she even told me who she was,  or what she wanted. I politely, told her I was SICK, and they sure as heck did not make any connection with me while I needed them, yet now all they do is call day and night with their stupid automated calls, wanting to have me "call" them back"... for what????  there is NOTHING they can do or say now that will "fix" what I did need, when they cared to not even answer me back or call me back.

Yet, the huge looming question remains, how the heck do "we" fix this? Unless you have money, power, people you know.... and whatever else it takes to "get" what you "need" out of this kind of issue.

I am so totally disgusted with all of them.... and as far as how to "handle" any of getting these issues fixed... I am at the place, that I honestly don't see that anything will get better for us... only worse.....

With my "current health" as it is, and NO support from the very physicians that SHOULD be giving me support, I may not be able to make the very trip that I've looked so forward to and that is to go to DC in 4 weeks to give my "story", just so others someday do NOT have to deal with these things. Yet, I can't go if I am too ill to go!

I am so totally and utterly upset over the entire ordeal, that I am to this place that I am ready to give up! WHY! should I FIGHT for something that I have NO WAY of  Winning???? As far as I am concerned ALL of my efforts, ill or well.... sick, or feeling good are all for none.... This battle is just not one to win....

I am not sure I even want to continue to post on this blog, or FB, or participate in any type of organization anymore.... It seems it causes more aggravation, All I see is doubt and dismay in others eyes, and I hear it in their voices and I see it in what they are going through....

For me, I am beginning to feel and see this is a no win situation.... and for others they may have far better luck than I... but I know when it is time to throw in the towel....

Stand up for Health Care Reform and a Public Option! Make Congress see what really is happening!

http://www.thepetitionsite.com/2/make-it-mandatory-congress-spends-time-assisting-in-our-ers-or-with-a-patient-dying-with-no

The above URL goes to a petition I created on Care 2 to make is mandatory for Congress, both House and Senate to go spend 2 twelve hour shifts in one of our busy, overwhelmed ER's, or with a terminally ill patient with no insurance coverage. They need to see the real world daily drama so many millions of Americans go through daily! Sitting at a desk on the Congressional Floor does NOT give them a taste of their own medicine! Can you say Reality Check!

Thanks for your time and support! Rhia