Sunday, June 29, 2014

Doctors, Patients, Medical Staff.... We Must Stand Together, Hand In Hand... and NOT Allow this "ship" of Medical Needs Sink

In this day and time, when SO MANY of us NEED doctors, medications and care, of the very best, what happens...POLITICS happen! I realize the VA has been an extremely huge mess for many years. I had watched my ex Father In Law go through that entire "system" when he had a brain tumor, and it is insanity. But, Medicare and ESPECIALLY the "Medicare Advantage" Plans are in the realm oer ever WORSE than the VA's nightmare. Our physicians are falling out and "opting out" of taking anymore patients by the dozens. In TX alone we have the HIGHEST RATE of doctors stating they are opting out.. because they are NOT getting paid, OR like a doctor told me, it literally took him 2 YEARS to receive payment for two surgical procedures that were done, and it was not until it WENT in front of the Cort of Appeals, the judge FINALLY paid him what he was owed. Of course what about all the time he was waiting to get paid? Who is "soaking" up these "unpaid" and underpaid bills the physicians wait literally for years to get paid for???? So, when you begin to "hear" the real stories of the doctors and medical staff that are there everyday working in the trenches, with the ridiculous amount of red tape, tangled and mangled "referral" for this doctor, and a "referral for this one, and another one"... and it goes on and on. And where are we when all of this "Waiting" is going on???? The patient suffers also.... somethings cannot and should not be put off due to "money".... so it is a two way street.... I don't blame the doctors for wanting to "jump ship" yet I also cannot fathom having honestly to CALL 32 DOCTORS OFFICES as WE have this week and NOT ONE will take the "State Funded Care" that Jim has to be on now, until settlement comes in from the wreck. So, even though this is a "state" by "state by state" situation, it is all the same! Patients suffer, the medical professionals suffer, and those sitting in the "big house" on the Hill are not "concerned" because they know THEY are taken care of the rest of their lives. I know there are some "good people" in Congress.
There are some that are fighting day and night, tooth and nail to CHANGE, UPGRADE, get patients taken care of in a manner they should be, but also get the hospitals, all of the medical staff, and doctors paid what they are truly "Owed" .... I am enclosing a part of the AMA Network Newsletter I get Monthly... down on the side there is one article talking about just this... but I feel you will find this horrifying when you begin to really take it all in.... where will "Medicare" being in 10 years, 20 years, 50 years... I doubt our kids will even see anything called "Medicare".... if we as a country continue to allow this "bad" business to go on... ALL of us shall suffer needlessly....

Thursday, June 26, 2014

FYI - Comments You Make On the Blogs... Blogger has changed something and I am working on it!

Everyone! I realized Blogger has made SVERAL changes in his last severakl weeks that I knew nothing about. A couple of them I have finally found out how to handle, thus those are not a problem.

BUT!!!! If YOU want to "comment" on any of my posts in the blog.... for now you have to actually "go to" that one blog by clicking it... and at the bottom of the post, where the little icons are to share on FB TWiTTER etc are, right below it says "Post Comments". If you click that it should bring up a separate window where you can post your comment. Not sure why they have changed it like that but that is all I've been able to find out so far. Just wanted to let you know to PLEASE COMMENT if you want to, but to find where you do, just go to that one post blog page and you will should be able to do so....:)  Rhia

... More on the "State" of Medical Care in Our "State" (s)...

... cont from post on FB... honestly someone I would be frightened frankly to see or to take anyone to that did not know much about medication and the medical field themselves. The woman is pure dangerous. She is just a bomb waiting to go off. I realize that trying to find reputable physicians that want to take Medicaid in ANY state is not easy. When I was in Seattle, I had went into to try and find an orthopedic doctor to help me with the same shoulder that NOW is completely replaced. They at that time were a bit different about Medicaid in WA state. I had no trouble at all, getting on it... but once on... no problems getting meds... and so happened the PCP that Jim had been seeing took the State Medicaid there so, that part was great. But, when it came to finding ANY type of specialist, that was insane. Just like here, either there is none OR if they have one they "no longer" take Medicaid, or not the "program" one you picked (it works much like a Medicare Advantage Plan does I come to find out) where like myself I can choose to have plain Medicare and find a "supplement" to help with co-pays etc... and the 20% I will owe. OR you can pick a "Medicare Advantage Plan as I did" and any of the doctors that take it, I pay 40.00 for a specialist, they see me, and anything they do "in their office" Humana pays for and my part is the $40.00 or $15.900 for your PCP. But, just as now this M'caid "Advantage plan" the idiots put Jim on, most doctors are either in the Dallas area OR up way past Dallas towards Plano, past Garland Or almost all the way to the OK/TX border! What happened rather than like the woman that helped me in Seattle find the "program" that fit my location better, the caseworker brought the paperwork into Jim, did not even tell him about the differences, asked him to pick a plan and sign. She never told him a thing about the differences, thus because he was at that time still ill enough he was unable to really "know AND READ" what all it said... he gets put on this one "Advantage" plan as I like to call it, that does not really cover much of our area or any around us! She rushed him, would not let him keep the paperwork till I could get there and help figure it out... thus he got the shaft so to put it, when it comes to these "specialists" he needs to see for future care such as a Neurologist, a Cardiologist, a GI doctor, an Eye Specialist... for some reason the eye doctor there that examined his eyes and did a new script, said it seemed something indicated to him, that Jim should be checked for Glaucoma... now he has been before... but this could be the results of the accident... because as we are coming very quickly to find out this "Spinal Cord Injury" can have an effect on just about EVERY PART OF THE BODY! One way or the other it effects just about everything. Heart, Lungs, Brain, Liver, GI Tract, Legs Arms, the entire "autonomic" and parasympathetic nervous system... which is also then divided into several other "branches". But I am speaking more of the fact that some of our nervous system makes things such as our lungs, heart, liver and so on work... then the autonomic is of us making our legs, arms, head and so on ... So there are MANY thing medically he might face, (not unlike us with our own Chronic Illnesses and Pain do) in the future. So, (Much like us( we have to try our best to be "prepared" by having a certain number of specialists already that we are established with, just in case one of these issues come up. Eyes is a huge one for us. I am on Plaquenil, which can cause macular degeneration and basically if not c found in time can cause blindness. Thus I have to see my Eye specialist every year for a couple of special tests to make sure I do not have any of that coming on... so trying to find all of these "specialists" that WILL take this type of "Medical Insurance" along with see him as a new patient, is as mind boggling as Anthony said as my own Blog, is "Bloggling" minded.. or something in that respect... again I am posting this on my blog, and will leave a link so you can come and finish reading there and please feel free to comment Rhia

Wednesday, June 25, 2014

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)

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...

Friday, June 20, 2014

JRA (Juvenile Rheumatoid Arthritis) Yes Children Can Suffer from this Affliction also...

JRA (Juvenile Rheumatoid Arthritis) and/or Still's Disease as a chronic autoimmune arthritic illness that effects children. I realize many of us have to wonder "how" and "why" a small child could have this and if they do, how do they discover it, how to the children deal with it, do they give them medications like they do adults, and probably if you truly sat to think and talk about it, you would find all kinds of questions floating around in your mind.

I had heard of JRA for years. I also knew it was certainly an autoimmune arthritic disease, that struck hundred of thousands of kids annually all over the world. Yet,it never occurred to me that they may possibly need a "different" type of highly specialized Rheumatologist (Pediactric Rheumatologist) who had more schooling and expertise in dealing with the children's type of illness. Often these children are "born" with it. From day one, even though the symptoms and signs may not manifest themselves for a awhile, or even if they do have symptoms many family care doctors, and pediactric doctors may not think about a child coming in with a myriad of "symptoms" over the course of several years, until one day a blood test, or something that the physician witnesses does the 2 plus 2 finally equal 4!
I had the fortunate experience of being in a group at the Arthritis Summit in DC this past March, with a gentleman, whose daughter was diagnosed with JRA when she was 9 months old! She celebrated 10 years of JRA this past month or so. Between all of the information he could tell us, his own experiences, his daughter's, and all that he has himself learned in order to help his own daughter along with the thousands of other kids, there was just so much he told me that I even with my research didn't know.
For one, we have "VERY FEW" Pediatric Rheumatoid Arthritis Specialists in the entire Nation! just in Texas alone, we have about 3 to handle ALL of these children's illnesses. Parents drive hundreds of miles, or even have to cross over go to a "pediatric Rheumatologist" for their child to get proper care. As huge as the state of TX is, there is only about 30 or less of these specialists. They are mainly around the Houston, Austin, San Antonio areas, the larger cities. So, kids that are off in West TX, or deep South TX, or in East TX, are the ones that parents must spend sometimes a few days getting them to their doctors for medications, blood work, testing and so forth. It is insanity.

Here is an event, from the Arthritis Foundation, especially for these kids. They have a camp they go to annually, that gives them a chance to "feel like normal" kids, and they can even bring "siblings" that can feel like they are a part of the process rather than feel like they are almost "left out" because a sibling seems to get more attention due to the JRA. It gives siblings a chance to "bond" and all feel equal and helpful. These are just incredibly amazing kids and I look forward to getting to know them better, and get a deeper understanding about their illness. Here is the URL about the upcoming JRA Camp.... take a moment if you will to read about this and how incredible these kids are.... to go through what they do... and still have such a positive and lively attitude... never feeling "sorry" for themselves, but having an understanding of how their lives will just be as they are because they have been this way since they were very little for some of them... they know not "normal" like us adults that sometimes don't get RA diagnosed until our 40's or older... if they have JRA from the time they are 9 months old... then that is "normal" for them....

Sunday, June 15, 2014

Ra - Orencia and MTX Combined! Initial Studies sound promising...

Orencia Combo Tops in Early, Severe RA

Sjogren's - Heart Attack? Severe Dental Caries!

      Sjogren's Heart Attacks & Severe Dental Problems 

 This is something that really shocked me this morning. Due to having Sjogren's as well as already having not just 1 but 2!, Heart attacks I truly wondered WHY there is NEVER much talked out, put in the news about, or for the most part NONE of my PC doctors RARELY if EVER mention it during a visit. I began being very concerned as to why, since I have some really "severe" symptoms, that honestly I feel have been "swept' under the carpet by the medical profession! So, I have been the one who "researches" about Sjogren's, how it effects us that have it, and sometimes having it as a "primary" autoimmune arthritis illness, rather than a "2nd" that goes along with another AI such as Lupus, RA, and the like.

Know the Facts:

I ALWAYS go in with the "latest" on medications of I have it, from the RA, Lupus, Sjogren's... and so forth. And believe it or not, several of my "suggestions" on what my "research" tells me, I may very well get some positive results from something. IT is the TRUTH, that had it not been for my "Own" research, and "self-education" I would never have been on the Latest medications called "Forteo" which is for osteoporosis. Mine is so BAD, my numbers are practically "off the scale". When I told my Rheumy about it, he immediately said you are a perfect patient that will get benefit from this. It actually does not just "strengthen" what "bone" you may have left BUT it actually helps your body to "re-generate bone"!!!

I have several including this Sjogren's mess. I began to dig, Google, read, ask questions, and try to fine out about it. SJOGREN"S'S si NOT just a case of "dry eyes and mouth"! IT causes your body to NOT be able at all to retain moisture of the mucus membranes throughout the body. So, this is not just a "dry eye and mouth" issue, it can turn into a very serious autoimmune disease issue, causing fatigue, low grade fevers, severe dental caries (rapidly) that must be removed because of the way it effects the teeth. Rather than like a "regular" cavity that begins on the outside of your tooth, Sjogren's begins deep inside the tooth. So, by the time you really know there is a problem that tooth or those teeth are already too far gone to be "repaired". I went with this diagnosis, as 2nd to Lupus, RA, Raynaud's, & a whole host of possible AI illnesses, yet u until about 9 months ago did I begin to suddenly have very severe cavities, that were already bad enough to have eaten holes too large to fill! Many of them would break off at the gum line even if I were not eating anything you might think would cause this. It started with one, and within 6 WEEKS, I had 3 pulled! It just kept getting worse. My fear was that there would more to follow, Just as I expected, after a "panoramic" X-ray of my entire mouth, MOST of my teeth are already too far gone to "repair". The very "few" left, could also begin at any moment, leaving me with NO teeth! It has literally frightened the hell out of me. Here I am, 54, and that is not that old, and my teeth are breaking off & having to be pulled frequently! So, I began asking my own dentist about alternatives, especially with the Sjogren's, and I was told by several, along with my own research, that regular "dentures" would probably not do well, due to the dryness of my mouth. The dentures would not be able to make a kind of "bond" well & they may not stay in place. So, I found out about the "mini implants", of which I am supposed to begin having put in. The procedure takes several months. First of all, it means pulling ALL of your teeth, then making sure the jawbone is healthy enough, and that you have enough of it to "hold" the little "gripper like" metal stubs they put in usually in 4 places, two upper and two lower, that will "snap" the final dentures into place and hold them securely. But, this takes months to accomplish AND it is certainly NOT CHEAP!!!!!

I have went to three dentists, and the estimates vary greatly. I had one that told me it would be something like $15,000!!!! I had another that was a couple thousand less, depending on the bone etc. Then another one told me $8,000,00. Well even that is astronomical, as far as "cash" pay out of pocket! Even though I could fight with my insurance to pay possibly to pay 60%! But that still leaves me 40%! And in order to have my health insurance pay for this, it takes the dentists helping to get something in writing, with diagnosis codes that indicate this is a "health related chronic issue" NOT a dental problem in itself. It is caused by the disease in other words. Well, it also means finding a "true" ORAL SURGEON! This is where I ran into all kinds of red tape and dispute. I come to find MANY dentists now "call themselves" oral surgeons. They take special classes over and above some dentists regular schooling. Those types of classes give them a "certificate" of being able to "do" oral surgery, thus the implants and so forth they can do. BUT, if they are not "fully licensed, fully fledged Oral and Max licensed by the state, before they are considered a "full Oral & Max MD". Of course I have found both, and many I find are the "1st kind". The "say" on the phone, on their websites & in their ad's they do these procedures" BUT they cannot help to give you a form that you can file with your insurance company to get that 60% paid back to you. I've been through phone calls, "so called free" consultations (watch that, it can come back to bite you in the butt), & I saw the "words Oral Surgeon/Surgery" & it is NOT what you need in order for this "chronic medical condition" to get considered a "health problem". Without that or without any type of dental insurance or health insurance. So, you are stuck holding that very outrageous bill, knowing your choices are not many, & trying to figure out how the heck you are going to suddenly pull anywhere from (I even read $25,000.00) yesterday - to $8,000.00 and so forth out of your butt to pay for this!

Fortunately, there is now a "medical/dental" Credit Card, called "CARE CREDIT" that is just like any other credit card. You apply, if they accept, they send you a credit card to use especially for medical/dental issues. And if you pay the procedure out by that allotted time. IF not, you pay monthly payments with interest just like any other credit card. Now, this is definitely a "God Send" for many people. For one, I believe it being something that your dentist can help with, as far as getting you enough "credit" to get a procedure placed on the card. And it is strictly for medical/dental purposes... and I "think I found out things like elective types of stuff such as face lifts, breast augmentations, and so on.

Still even though this "pays" your dentist, you are still going to have to shell out the money in big chunks or monthly installments.   

As you read at the URL below, about Sjogren's and think about just how it, as an Autoimmune Arthritic Illness has been shoved under the rug as I said earlier, I will say for myself, it has been a very "earth shattering" experience for me. I am terrified of having ALL of my teeth pulled!!!!!! YET!, they are cracking, breaking, chipping and falling out a a rapid rate anyway, my choices are slim to none!

AND trust ME, I surely do NOT have that kind of "cash" laying around to just jump into that reclining chair, have a bit of "laughing gas" put on & get all of your teeth jerked out... then spend another 120 PLUS days awaiting for those implanted posts in the jaw bone to properly heal enough so the dentures can be attached and unattached and remain strong in the jawbone.

I urge all with Sjogren's whether primary or 2nd to one of the other AI illnesses, to do your homework on this. I feel many of us have been "left in the dark" way to long on this chronic disease. AND NOW what is EVEN WORSE, we find out that this illness can also have a HIGH chance of causing us heart attacks on top of everything else.

Below is the MedPage URL:

Sunday, June 8, 2014

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.