When You are Fighting Chronic Illnesses, Chronic Pain, Doctors, Pharmacies, and Medicare Advantage Plans - you need lots of ammunition and tenacity...

I have wanted to be able to get to this subject for all of you over the past couple of days. Of course about the time I have a "clear slot of time" open, my email decided to blow a gasket on me. I had also not known about a follow up appointment Mom had to have her semi-annual "cardio-sonogram" yesterday. So, I had to pick her up and take her to have that done yesterday. It's not that it takes that long, but by the time you dress, pick her up, have the testing ran, then get back, visit for awhile, and I also had a couple of errands to run, I felt like my day was gone and I did not get anything I wanted to get done accomplished.
Plus, I had "overdone" it and used to too many of my "spoons" last Friday, so all of the plans I made to do things around the house both Saturday and Sunday, got basically chopped in half. Saturday I was in so much misery, between stiff, sore, pain, a splitting headache, almost as if I had another Lupus or RA flare hitting, that I spent Saturday on the sofa for the most part, and that really frigged up what my plans had been. I have SO MANY things I want to get accomplished around the house, from repainting my kitchen, painting and redoing our spare bedroom that is our "music room", getting the floors put down in the kitchen and bathroom, and laundry room, we still never got all of the outside of the house painted... and things just really took a nose dive when Jim had the car accident, was in the hospitals for so long, in rehab for so many weeks, thus lots got put off until we could get back into some kind of whatever normal was as far as a routine. Well, we have still to find that "normality" or routine. I feel like I fly by the seat of my pants most days... either waxing and waning one way, or flopping around like a fish out of water in another. Nothing ever seems to come easy, no matter how simple, you can guarantee there will be some kind of snag in the line.

But, when I got this ridiculous letter from Humana, My Medicare Advantage Plan. I have had them ever since I first got my Medicare parts A and B, which was about 2006 or so. They have now decided I guess to probably NOT Pay my PCP enough OR my PCP has gotten "greedy", thus he will no longer be a "preferred provider" come Jan 1, 2015!!!! Which totally sucks green pecans, if you know what I mean. This primary care physician of mine is the ONLY ONE who out of all of the tests, doctors, surgeries, and so forth I had had, the LUPUS, RA< SJOGREN"S, and the list continues. Well, Dr. "B" as I will refer to him as, had just gotten to my home town and I was one of his very 1st patients. At the time he was brand new, he was "brilliant" when it came to "discovering" the unusual, he looked at everything with a "fresh" eyes, and he was "up" on the latest when it came to autoimmune illnesses. But, even though I was one of his very first patients, including I got MANY others to move over to him, because I so so pleased. He got me on the right medications, and I did go and find try to find a Rheumatologist, in which I did. But, the Rheumatologist were more on the end for the Rheumatoid Arthritis end of the ball park, Dr. "B" took care of the Lupus. When I have flares, he is the one that gives me the Solu-Medrol injections, the larger 14 days step down doses of prednisone. He also prescribes my MTX, Plaquenil, and small daily dose of prednisone. So, without him I would be back and forth to some doctor in Dallas, that would be the waste of an entire day, more money, more time, for something that can be handled here, usually by a phone call, me coming in, getting an injection, a script and I am on my way.

I am not quite sure who is the issue, probably both... it is a well known fact Medicare and especially the Medicare Advantage Plans don't pay worth a darned when it comes to the physicians, But, if you have someone within 5 minutes of home that can do the exact same thing, you save time, the doctors save time, gas, and things run much more efficiently that a trip to somewhere else for a Lupus Flare.

So, this letter that I receive from Humana explains to me that if I have "certain" health conditions that Dr. B takes care of, then they will make an exception and pay him as they always have. So, out of about 15 health conditions names on this paper, Lupus was one of them. So, I fill in the paperwork, send it off to Humana, and about a week later, very late one evening someone from Humana leaving a message about that paperwork. She said she would call back the next day, and so I expected to get a phone call from them the next day. But instead about 3 days later I get this ridiculous letter, stating that "Lupus" and Hip Pain (I have NO CLUE where "hip pain" came in what so ever") did NOT qualify and they would NOT continue after Jan 1 to pay him as a "in network provider". OMG, I was so livid, had it not been late in the evening by the time I got the letter Humana would have gotten a piece of my mind...So, of course you can send in a written grievance in which I did. I also boldly told them they were not going to get by with blowing me off like that. My "condition" of Lupus was serious, it was something that Dr. B is the very doctor who diagnosed it, he is the one that since 2009 or 2010 had taken care of me, which every time he fills my medications, he does the follow up blood work, he takes care of the "side illnesses" that go along with the Lupus, and not one other PCP is going to want to take on my complicated case due to it is a complexity that has to be kept up with. As Dr, B always knows exactly what is going on. If I have a "new" symptom, he knows if it is related or not to the Lupus, and he also takes cares of my mouth ulcers, thrush, stomach problems from Lupus. As I had said and we know for a fact, I can go from "well" to ill enough for ICU within minutes under some circumstances... just like I had double pneumonia back in April. No one was here but myself, so I did not realize I was running such a high fever I was all but see things and hallucinating. Thank goodness I thought to check my temp and even though I never run fever, I did not usually do so, and if it had gotten any higher I may have went into convulsions. Luckily, I was still smart enough and scared enough not to drive alone, so I called my Mom and had her pick me up that Sunday afternoon and carry me to our Urgent care Center. But, if that had been any other time during the week, I would have called Dr. "B" quickly, and found out I was running 103.9 fever, and had double pneumonia!!!! It was so bad the doctor on call at the center wanted at first to send me to the ER and possibly have me admitted. Well, at the time Jim was in Baylor after the car accident, which he was still in Acute Care and had just gotten out of ICU with all kinds of broken bones, a very long 9 hour back surgery, 17 broken ribs and it continued on. The very last thing I needed was to be put in a hospital down here, and have him in the hospital up in Dallas....

So, having a physician that KNOWS my health issues, ALL of them, how the interrelate to one another, and what has taken place, from surgeries, to the 6 weeks I spent in two hospitals, and almost died from what they can surmise had something to do with the Lupus. But, even in the huge hospital in Dallas, and all of the highly specialized doctors there, many of them were NOT familiar with Lupus, nor any of the health problems that come along with it.

So, I got to thinking about this entire scene, and it just makes me even madder than I was when I first got the letter from Humana! In the first place, IF HUMANA was PAYING the doctors better, then the doctors WOULD NOT be dropping out of being "Preferred Providers"... and if the DOCTORS were NOT SO MONEY HUNGRY they would be "settling" FOR WHAT THE INSURANCE pays them, and not setting their GOALS OF MONETARY GAIN so high they cannot either afford to pay the doctors better OR WORSE they take FOREVER TO PAY THE DOCTORS!!! This is NO JOKE and it came directly from the mouth of one of my physicians!!!!

He had TWO SURGERIES, and I know he meant very EXPENSIVE SURGERIES, because it was probably something like having a pain pump internally put it or something like a stimulator put in internally, which the doctor has to implant. Both of them are very expensive. Just the devices themselves run upwards of 50,000.00 or so.

Anyway, he had two patients that AFTER TWO YEARS OF dragging their feet, the Doctor had to take Humana Medicare Advantage plan to COURT IN FRONT OF THE JUDGE, and the JUDGE MADE THEM PAY MY DOCTOR!!!

But, it took him 2 YEARS to get paid on those two surgeries!!! If he has to wait to get paid on many of those expensive procedures, they will all go broke trying to keep up an office, pay employees, pay taxes, and keep an office up and running. It was insane to hear how long he had to wait and then for a judge to have to demand they pay him what they owed him. I just about let my jaw hit the floor. Now, I also know doctors charge WAY TOO MUCH, to try and compensate for what they are trying to make up on those cases they do not get paid, or certainly not enough. So, it is a circle in circle around and around the merry-go trying to get one hand to a one to pay the other. In the mean time guess who suffers through this??? Yes, you have it.... US, the PATIENTS!!! We suffer added money out of our pockets, paying for doctors and the clinics and tests, and in the end, half the time no one has a straight answer for us anyway. So, now this puts myself, my Mom, and Lord knows how many other patients just like us are suffering through the exact same issues. It is damned if you DO, and you be damned if you don't.

I have even threatened NOT TO go to a PCP anymore, but just use our "urgent Care center" here. They have their heads on straighter than most of the primary care physician. The 3 or 4 times I've been out there, one of which was for a Lupus flare during a weekend, and then I could go there and get checked in, checked out, have my injections, get my prescription and be on my way. To top it off they are the ones as I said above that diagnosed me with double pneumonia, took the X-rays right there, right away, were on the ball and I was out the door and headed home without any hassle. And out of pocket for me was my $40.00, plus I did not get exposed to an entire room full of germs and people running fevers, and possibly get something else, other than what I already had. It was a "pleasant"(if you can call having double pneumonia pleasant" experience, just due to the fact there was no hassle, and I was home and on my sofa within an hour and a half. It took longer for the pharmacy to get my script ready than it did to get through the Urgent care in itself.

Now you can get your flu shots, pneumonia shots, even tetanus and so forth at the pharmacy, they will even sometimes check your cholesterol, blood pressure and so on, including hearing test for free at different times. It is getting to where people don't want to step into the room of a doctors office, because it takes too long, they never answer your questions, once you spend hours getting in, they then herd you in and out like a bunch of cattle, not really bothering to answer a question one you may have. I've gotten to where even my "tricK" of taking my LIST of all the thing I NEED to talk about them with, and he is running out the door before I can ask the 3rd question. As someone who believes in researching everything myself, and also believes that MY TIME, YOUR TIME, OUR TIME IS JUST AS IMPORTANT AS THAT DOCTORS TIME!!! So WHY do WE wait for HOURS FOR THEM!!!


Then they have the audacity to post a sign if a patient does NOT call in 24 hours ahead of time to cancel, they can charge you anyway. But, I've had doctors CALL ME ON MY WAY TO DALLAS FOR AN APPOINTMENT and they tell not to come, because the doctor is out in an emergency or had gotten called away suddenly!!! So, now my day had been half ruined getting ready, getting dressed, wasting, time, gas, and everything else, yet it seems to be perfectly "okay" for them to cancel at the last moment. Believe me I felt like sending them a bill for my time and see what they thought about that.

I had read an article a couple of years back where I woman did just that. She had a doctor cancel on her two times in a row or something, so she did send them a bill for her time and trouble!!!  Whether she ever got able paid or not, but I bet it did put it on their minds. OUR TIME is just as valuable as anyone else's is... whether the doctor, nurse, surgeon or the Pope!!!!

Again though it takes time and tenacity to do that I can see where under the right circumstances it would get the attention of those who think they are "better" than use.


I would be interested in knowing how many of you with Medicare Advantage Plan and possibly have gotten the exact same thing. A letter telling us that our doctors won't keep them on and be "preferred provider" after January1st 2015. If you HAVE either post here, or send me an email because I would love to hear from you. Then also what are you going to do under the circumstances? Change, try to keep your doctor, just pay the "extra" amount and stay, or does it even matter....

Talk About News to Make You Shout! You must read this and be sure to go to all of the links!!!!

I was so blown over by this announcement from the Lupus Research Foundation I had to rub my eyes, blink and look again to make sure I saw what I saw Correctly!!! This is such phenomenal news I was just taken aback.

And further not only do we owe the NIH hats off to this incredible research opportunity, but everyone below along with all of the researchers individually, those folks that are on board for activism, Ambassadorship, Volunteers... everyone who tries their very best to stand up and say that what we have now as far as help for these illnesses are simply NOT acceptable, as the Arthritis Foundation puts it. Hats off to all that have been and will go back to the "Hill" in D.C. to open up and tell their stories, or the stories of those loved ones hit by the horrific illnesses. People like myself that try their best to live a "normal" life when there is never any sense of "normal" when you have a chronic illness/pain and especially when it comes to an autoimmune type of illness. I am so thrilled to put this on my blog and share it with my readers!!!! Be sure you go to ALL of the links and see what is being said about this incredible Undertaking... the FIRST EVER of ITS KIND to do something to stomp Lupus and RA, along with many other AI Illnesses into the ground.... Again I am just totally almost speechless.

AMP Rheumatoid Arthritis and Lupus:

The partners

http://www.arthritis.org/

Government

• NIH

Industry

• AbbVie
• Bristol-Myers Squibb
• Merck
• Pfizer
• Sanofi
• Takeda

Non-Profit Organizations

• Arthritis Foundation
• Foundation for the NIH
• Lupus Foundation of America
• Lupus Research Institute/Alliance for Lupus Research
• Rheumatology Research Foundation

http://www.niams.nih.gov/News_and_Events/Press_Releases/2014/9_24.asp

 

 

 

http://www.rheumatology.org/ 

 

 

I will be posting more about this tomorrow and also more "Kudo's" to everyone participating om this historic event for RA and Lupus!!!

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.

The Essense Of A Nation In Desperate Need of Quality "Non-Greedy" Medical Staff... where have they gone?

As I title this, I know it shall keep the "title" I have here now. This is a very true tale, about a recent occurrence that I've witnessed in a small town close to my very own. Population, probably a great deal smaller than the 20,000 so give or take from Ennis. By driving down "main street" of this tiny town you would assume just about everything has shut down, due to the larger towns around Ennis, Waxahachie, Lancaster, DeSoto, and even Dallas for that matter, so of the 2 entire blocks that make up down town, I would venture to say 80 percent of the window fronts are empty, and the stores have been shut down for a long while. All of this from giving into the larger communities such as Ennis, with its large Wally-World, or Waxahachie with Lowe's, Home Depot and all types of "large" stores that took over our "Mom and Pop" neighborhood stores many decades ago. When we pulled in for the first time about a week or so ago, my first view into a "farming" community in a long while.

I had been in this community just outside of Ennis many times in my younger years. And as usual not much had changed. The dentist I took my kids to see there were closed.

But, when we walked into this place that was supposed to be a "medical clinic" I was not sure whether to run to the car and leave, to ask if this "was the clinic", to laugh, or to just sit down and cry. The upholstery on the chairs must have never been cleaned or vacuumed. The entire place was "junked" up with bric-a-brac, and even though there were plenty of chairs, today the place was more than packed and standing room early. Most of those there you could tell were either living from day to day, and of course this clinic is specifically for those that are without insurance & are not able to afford a lot as far as a medical visit. They also do a great deal of "referrals" to other doctors. So, like Jim, he needs to have several "specialists" that as time goes by, he may need medications refilled, or something to be checked out.... after this huge of an accident, the idea of just anything could go wrong and he needs to have a list of "specialists" that would take the "Superior" Medicare Policy... some type of "state" assistance meant for someone more like himself... an accident,no insurance, also even though we have a lawyer it could be a very long time before we see the finances to be able to "pay" for the medical bills. We have hope their will be something to cover later in life, but at the time we have no clue at all as to what if anything will be given, not given, etc... out favor, not in our favor... we just don't have clue... and until the day the lawyer, or someone hands us a legitimate "check" I don't even want to try and dwell on what that might be.
For now, we can squeeze through month by month, and get everything paid for... and that is what counts for now,

Back to the Subject... this woman in behind the "receptionists glass and wall, was just going on and on about this "person" who had passed away.... talking on and on about the relatives, the funeral.... for at least 25 minutes... at the very minimum... and there was not another patient to be seen. Finally, this "voice" calls Jim back. OMG, I almost fainted. Here is this very feeble, very elderly woman, and she was then and again yesterday - and had no clue what she saw him for the week before, what medications she was "supposed" to have given him... claimed she "NEVER" calls medications in, yet as she began to write our scripts, she is on the phone with our PHARMACY giving them the scripts. All in All when we got through.... we were THROUGH! This woman... and I am sure year ago may have been a great doctor, BUT SHE NEEDS TO BE TAKEN OUT OF THE MEDICAL WORLD!! The lady either has dementia, or the beginnings of Alzheimer's.... and another thing.. she never listened to anything we said to her, and she could NOT sit still. She was up and down, out in the hallway, talking to one person, then another, then would come back in and ask us what medication did we talk about... and at the very last, which took the "cake" as the saying goes... as she began to "name off" specialists Jim needed to see... a GI doctor, yes, A Neurologist, yes, a Cardiologist, yes BUT really only to keep an eye on his blood pressure due to the Spinal Cord Injury and a PCP is able to do that, and then all of a sudden, after WE said a Pain Doctor, she leans over and says to Jim "Also you need to see a "pee-pee doctor" ROFLMFAO!!!! What the hell??? Where are we in a Pre-K class room or what??? What about a urologist, and HE DOES NOT EVEN NEED ONE! There is no issues to even need a "pee-pee" doctor, HAHAHAHAHA!!!! By that time I did not know whether to slap her, or just feel sorry for her... or BOTH! Who I DID FEEL SORRY FOR were the 20 patients sitting h=in the waiting room to see her... Unless they needed a -pee-pee doctor they were sh*& out of luck....

Border for Illness? Researchers for Chronic Illnesses, Autoimmune Diseases Connected in many Ways?, Lupus, RA, Sjogren's - How Many are you diagnosed with?

I post this morning getting off the "days gone by" and back to the medical world at at hand. This particular post came on one of my Med Page Today's News letter I get daily. It caught my eye for several reasons. First of all, this particular "illness" can be caused by being in water that carries it, dogs can carry it, rodents, which means larger cities with people that live on the streets could be more prone to it etc. But, in everyday life we, meaning any of us could come in contact with it. I young boy came in contact with it after being in another country, and he got ill after returning home. He was in and out of the hospital with what seemed to be aches and pains, stomach upset, and almost like flu symptoms. But, after researching his travels of latest they were able to put together the child had contracted  (leptospirosis) http://www.medpagetoday.com/Neurology/GeneralNeurology/46185...

Some of these types of illnesses are difficult to detect if they right questions are not asked, and now I have noticed more and more doctors asking me if I had been on a plane lately, traveled to another region overseas, been anywhere out of my normal home life anywhere, where you can pick up some of these illnesses. Not that they are not only there, just like this one, dogs can have and carry it, but it is more likely to be a more aggressive strain that your body may not be able to fight off unless you tell your physician right away following a trip to somewhere you have been, then suddenly you come down with symptoms of illness. Even around our world today, it seems Polio, which I can barely believe is back on the playing field of illnesses, and with a rampant rage from what I have read. I honestly thought polio was another one of those illnesses like "small pox" that had been eradicated from the world. Yet here were are with Polio showing up and in a good number since at one time we had cases almost down to nothing.

I've never had the pleasure of going anywhere out of the United States for any type of trip. So, I do know about all of the "standard" inoculations you must take in order to go to certain countries and so forth. These are due to coming in contact with some illnesses that may not be here, but they still exist in other parts of the world. Which leads me to the question... we are growing daily in to a "smaller world"... before you can type this out everyone all over the globe can be reading this in just about any country, any nation, any household, within the "hit" of enter on the key board. Thus it is no wonder why so many of these diseases we once considered gone from out nation and possibly world for good, are alive and thriving in the country you are flying to, or even the person you are sitting by could be carrying that illness that might be able to get on board your track or any numbers of illnesses such as these, that we don't often think even exist in in the USA, but could lurk in the very person sitting next to you. As highly intelligent as we are here in the USA, along with the brilliant researchers in the UK, China, some places such as India, we have the smartest doctors, researchers, fellow medical personnel that have ever been. But, our "diseases" seem to be getting a bit smarter also. Autoimmune Illnesses such as RA, Lupus, Sjogrens, MS, Still's disease, Diabetes 2, Myasthernia Gravis, Pernicious Anemia, .... others osteoporosis, FM, CFS/ME.. just a very few of the hundreds and hundreds of chronic illnesses people in our nation as well as all over the world live with, we are as in much deserving of the best treatments, the latest researchers, medications, testing, and all that has been found out by those that use their entire lives dedicated to finding a "reason" for these, finding a way to put them into "remission", medications to help with all of the side effects and other growing number of illnesses that "stem off" from Lupus, and such. More and more we find out due to this "pattern" of the World Wide Web, that at our fingertips, we can "see" how many other have all of a sudden come down with similar side "illnesses" - more like a Secondary to the first one, and often with very similar symptoms. RA and Lupus seem to run hand in hand... along with those I see that Sjogren's, Raynaud's, Vasculitis of sorts, Shingles, Heart Problems, Kidney problems, Liver issues... all almost seem to run neck and neck with what your were initially diagnosed with. It is overwhelming when you begin to research your own "symptoms" and diagnosis, that physicians give you. There is such an evolving realm of the latest and the greatest, of cures, of things to "explain" how Lupus or RA maybe genetic, or how CFS may come from this viral syndrome, or your teeth are falling out simply because with Sjogren's, they literally "rot" from the inside out, not like regular dental caries do. When you went to the dentist as a child, if you went, yo may have had the dentist find a small "cavity" a spot that was starting to become soft and weak, more or less "rotten" as I would call it, but it was "seen" from the outside of the tooth, then usually confirmed by one of the old fashioned cardboard mouth cutting X-rays they put in your mouth, aimed the machine at it, and then had to wait to see how it would look. Of course now it is as simple as holding a small "stick" in your hand, they put a small "digital" X-ray machine up there and they can snap away and get as many as they need. My latest adventure was the "panoramic" one. When that machine began to go all the way around my head, encircling it... and then immediately, I SAW every ROTTEN tooth in my mouth  almost fainted. The difference, these teeth "never" showed signs of issues. I never had a spot that hurt or turned dark, I never felt I needed to go to the dentist honestly, and after not having dental insurance for a long time as long as I brushed, flossed and took care of the, I thought I was "safe" as far as my teeth went. Then wholly cow a year ago, I huge piece of a back tooth broke off while I was eating something, and it was something soft.. Well before I could even get to the dentist another one did the same. I was wondering where all of a sudden this was coming from. I did know that "Sjogren's" could cause dry mouth, dry eyes, and was a pain when it came to those things. But not one of my doctors including ANY of the Rheumatologists, EVER informed me about the very "HORRIBLE" issues of Sjogren's...  Now here I am at 54 years old, of course IF I felt like fighting my health insurance com[any, I may get 60 percent of the $8,000.00! bill paid! But, while I am bickering with them, I am losing more teeth, which means more bone loss daily, which means a possibility of the implants or not wanting to fuse into the jaw bone properly... and you know where I am going..
So, who has "estimates" of $15,000.00 %$23,000.00 or even $8,000.00 lying around to give their dentist? I venture to say NOT MANY! Don't get me wrong, many of us probably have the "credit line" on a card or two in order to come up with $8,000.00. But, I mean "clear no interest cash payment", so when you walk out with all of your new and beautiful teeth, you do not owe on them until your are 95 years old!
I had and have choices to make. I could have "tried" to fight like hell against "Humana" and gotten a possible 60% (by the way even IF THE DOCTOR IS ON their PLAN) they still ONLY PAY 60% and not a penny more, even though this is caused from a medical problem. So, I would have still owed 40% of a bill that in Dallas at any of the larger Oral/Max Surgeons, would have been three times what the other 3 "estimates" were. So, I would have been well away, further from my dentist if I happen to come down with an infection or dry socket in the middle of the night or needed something on the weekend. You can BET there is NO WAY any of those in Dallas would come in, open up after hours... but they would tell you to either call this or that number, OR go to ER! Like the ER is going to do a damned thing about a tooth infection or a dry socket. Where, here my dentist is about 2 minutes away, 5 or 6 "small" city blocks and I bet if a dry socket or infection appears at night, after hours or on a weekend etc... HE DOES open the door to come in and fix it! Then I faced the fact that NOT one soul I know could drive me back and forth to Dallas right now. If I had any type of anesthesia (and believe me this time on Friday, I am asking him to "turn up" the gas) ... they were having heck getting the nose piece to stay where it neded it to be and I was not getting any of the medication I don't think... it never felt any different and I was not more relaxed as I usually am if they used the "laughing gas"... so Friday when he pulls SIX TEETH, I will make very sure I am "feeling some effects" from the has first. In fact I am looking that puppy up today to see how they determine how much and if you can ask them to "turn it up".... ;)




So, right about now you are asking yourself, what subject is this woman on today? illnesses" that come from other country's?, the many different realms of how autoimmune illnesses can turn from having one to several, how we need more informed physicians on these illnesses that will TELL US that SJOGREN"S is ROTTING YOUR TEETH PROBABLY, but we need to look with an X-ray because they are not "regular cavities" ???? or... How OUR world gets smaller, our diseases worse and spreading violently, how the USA does not care about "our healthy" BUT the CONGRESS SURE gives a darned about how much "medications, research, and pharmaceutical companies line their pockets?... Well, if you said ALL OF THEM! YOU get the prize... to me in one way or the other ALL is connected... we have illnesses that don't really "come" from here... but certainly"get here" rapidly from planes and ships, or not just people but animals, foods, anything shipped here from another country could have the capacity to make us "ill".. with one thing or the other... and every time I was an apple, or melon or a watermelon, banana, peach... you name it, I fear I am bruising it due to how hardly I am scrubbing.. like a child with dirt behind their ears ... trying to get every little germ off before I dry it off.
It is to the point we are inundated with worries about "germs", Illnesses, diseases, and all of the viral abundance of things out there that can make you a tad ill to those that can put you into the ICU for weeks on machines to keep your heart beating and your lungs breathing.

I am NOT downing the place our medical world is taking and has taken us. But, at times we have become so extremely concerned about the aspects of illness, we have a difficult time trying to enjoy those days we are NOT ILL! Now I know, like myself, any and everyone with a chronic illness, from Autoimmune Illnesses, to CFS, to like Jim as I am learning a (SCI) Spinal Cord Injury, & those that have lost limbs, had to have multiple joint surgeries, this list could go on forever about the about of those of us with some type of "chronic pain and/or issue, either in our own life, or in the life someone you are close to.
I've tried to figure out in my own "tiny small half fogged out brain of mine" why is it we seem to HAVE MORE illnesses... when I was a child I did not know nor hear about ALL of these illnesses, those with chronic pain and suffering, and those that had been harmed in an accident or came down with some "foreign" virus. IF there are more now, why? Well, if my own "stupidity" of a self would think again, as I have said before and will repeat myself again I am most sure ... we have MORE PEOPLE, WE ARE over covered in NEWS happening right then... we are stnading under the helicopters when they are searching for a thief. Or we have someone like Richard Engel that sometimes I wonder about) who seems to love to "dig down in the trenches" literally with those guys and girls over their protecting us... so first hand we see the bombs, the shooting, the massive about of bodies being dragged in a pile to be basically push into a deep pit and covered over. Because there are SO ANY BODIES, THERE is no way they could bury them all. Thus they will later probably build some time of "shrine" on that plot of land so they can "remember" those innocent men, women, and children that died needlessly over a "holy" war! This stupidity over in the Middle East is jut that stupidity. It has nothing to do with the "GOVERNMENT" or politics. Oh they may try and tell us that, but it is a war to help the people and to get back to "democracy" but  it truly is a "HOLD ABOUT GREED, CORRUPTION, & POWER... it is about "one's them "God's beliefs " over how they feel about"
It is NOT that MORE of these types of things are happening. Look back and you can see we got these pieces of information, NOT on an "I-Phone" or Smart Phone. We did not open our I-Pad, Laptop, or run to your desk top to check out what was going on . Thus the "news" was happening all along, we just did not know about it until we heard it on the news channel or happened to see it in our local paper or the Dallas Morning News. If bad weather was coming, of course we were informed as quickly as possible on our local news channels, but sometimes by radio, rather than on the television.
It has not been that many years ago, when "kids" were kids. We rode our bikes, went to school, learning math, reading, and thinking about our next Summer Vacation. Now there are kids that were my age in the 5th, 6th and 7th grades that are bringing loaded guns to school and killing  my fellow class mates. I can't even imagine where I would get an idea like that. I grew up in the 70's listening to the Eagles, Stones, Procol Harum, Fleetwood Mac, naming them from Elvis to Porter Wagoner, and NONE of that music made me want to "harm" myself or my parents, or anyone for that matter. But the point of the matter is, we DID have probably many terrible things going on. We were in wars, like Vietam, and the Korean War, & have since then had to FIGHT to keep our Nation a free nation.

I am not saying that it is a bad thing, but kids now days know MORE about guns, war, fighting, drugs, sex, & just about any other crude, distasteful subject you could dream up to talk to them about, and bet is, many of them would be able to tell you something about every category. IF you asked them where they heard about a particular type of weapon, or some type of drugs out on the street, if they want to, I am quite sure they would say one of the other students, or students parents, or teachers (kids of course sometimes overhear teachers and our) conversations.

There are things to this day, that I would be clueless to talk about when it came to certain subjects, and I know my almost 30 yr old and 35  (I think almost 36) year old could come right out and tell me that had known that for years and years!

Eve though our "time lines" in many ways are somewhat the same.... many of us in our late 40's early 50's like clothes, music, movies, concerts etc just like my 30 and 35 year old does. Then there were MANY differences in how I raised them to think versus how my Dad, wanted my Mom to "teach" me. SHELTERED! Keep the women of the house "dumb" or not as intelligent thus men keep control, and things stay "in harmony".... Sorry Dad, but that was total bull crap!

Not me, I tried my best to teach them what was RIGHT and what was WRONG!, how to treat others, and to get the best education (at that time) that you can or find something in a job you "love", and then hold onto that job. If it is not really quite the right one, that one will appear someday if you are patient. Well guess what... most of the things I taught them "stuck" BUT "patience" is NOT one of them... if they WANT it they want it NOW!!! No saving up, no waiting until we have the money, not giving thought to other things that could effect the bottom line, and yes to this day, I hear it from my daughter quite frequently that they are "talking about" saving up for the house they finally want to build.... BUT the next week they will have a new vehicle or another travel trailer when the huge hail storm beat it to pieces down by the Frio River this last before before when they had the BASEBALL sized hail!!!

Okay, after taking the VERY LONG ROUTE to get to my point, is exactly what my point is. As "technologically intelligent" as we are, the things we NEED to accomplish are mind boggling and astronomical. I know with the highly educated, and some of the best genius' that have ever been on this planet, someday, someday, they SHALL bring US the LIGHT! It will "turn onto" a whole new way of treating illnesses for all. It will be something that will totally change Medical Science and send the "older doctors" packing because it shall be that advanced. I honestly have no doubts in that. OF course it is NOT going to happen "overnight", in a decade. or whatever kind of "number" you want to calculate it to.

The ONE THING that SHALL REMAIN CONSTANT throughout ALL OF THIS NEW ADVANCEMENT and what shall NEVER change... and that is "US". WE the volunteers, the advocacy people, the Ambassadors, the Activists... our VOICES MUST remain the one CONSTANT now, and forever until eternity. We are an integral part of what MAKES Laws come from being a "thought" to ACTION! We are the voices that ring out on Capitol Hill with groups such as Arthritis Foundation, IFAA, WEGO, The Lupus Foundation... and SO MANY MORE there are too many to truly name... and within the "cyber walls" that bind us ideas ""give birth".... and they teeter and totter just like a toddler as well make way for bigger and better place to go. And as we Watch that "one small idea" become living and helping out those who need it so desperately... we can thank one another and our own selves for the tireless, no pay, volunteer, hours for making that become what it is today.

So, as I cover many things in this post... I hope you pick up something that gives you a 'light" tonight to take with you... and make your own idea "be born".....


Here is the link what began my "brain" power and thoughts or what is left of my brain... what is left and that is not of too blogged to write the above...

http://www.medpagetoday.com/Neurology/GeneralNeurology/46185

Help Out... Become An E-Advocate for the Arthritis Foundation and have YOUR VOICES HEARD on Capitol Hill!

 I wanted to share something with all of you about the Arthritis Foundation. Of course they have several ways you can "help" the cause. One of those is to become an "E-Advocate". Which they send you an "updated" newsletter about 3 to 4 times a YEAR, and they do NOT give out your information, plus they may send you an occasional email about say "RA, osteoarthritis, etc" that is something they are "working" on to get the Congress people to be educated, and give them a guide on how the "people" feel about it. You never HAVE to do anything. But, if they send something you are passionate about, say a change in how Medications "tiers" are now, which is a huge one for all of us, you can have an email sent to your own House of Representative and/or Senators... it is already made out for you... you just pull the ones from your own location through a zip code, and hit send, OR if you like you can certainly add or change what you want to say. As I said, you do not get any daily junk mail, adds, or anything of that sort. In fact I am attaching the URL explaining what an "E-Advocate" does. If you would like to be one, please email me, send me a message or post. It is a part of something I am working on to become an Ambassador for them, so again I can take OUR voices to Congress and Capitol Hill and represent ALL of us... and I did! And I did see the great results, even in my own Congressman honestly, so I know this works. Here is the URL... if you do decide to become one, all I need is an email address, your zip code, & a first and last name. I have to turn that in so they know I completed that 'assignment". I ask of you to do this, because that gives me a chance to take YOUR worries, cares, concerns, and what you want to see changed in the health field for you, our nation, and tell our own government how we feel.

http://www.arthritis.org/advocacy/inside-advocacy/