Sjogren's - The Stigma of "Loss" - Dentures at barely 50 years old

If anyone would have walked up to me just 7 years ago, and told me that I would lose every tooth in my mouth within 7 to 10 years, I would have called them much more than I liar.

From the time I was about 13 years old, I was already repressed about my looks. I was never an "overweight" child. In fact, until I was in about the 5th grade, never would I have figured I would have a weight problem. Yet, as I said, by the time I was in the 5th grade, I began to have issues with my weight. I was never to the point of being "obese" but I had extra weight on me, that did give the other kids something to make fun of me about.

I also inherited two top "large" front teeth. My Dad, my half brother, myself, and then even my son all have issues with larger than really should be front two top teeth.  So, when I turned 13, I began to be embarrassed not just about the weight, but more about those large front teeth. I also had crooked teeth, especially about the middle 6 on the bottom. In fact, my parents had taken me to an orthodontist, and they had began removing some of my molars in order to make room to straighten my teeth. I also believe he would have "lessened" the two tops ones as the others began to be straight. So, I went through having some molars pulled, and had impressions made to begin the braces. Yet, for some reason (now since I am an adult I figure money) my parents decided against the braces. I recall just how upset I was. I knew my teeth were ugly, and I always my entire life dreamed of having "pretty teeth".

Years went by, and for many reasons, money also probably a huge one, I never went ahead even after being an adult had my teeth straightened. I could have, but I guess by then I "thought" the stigma was a bit silly. Just like I wanted a larger "chest", yet I was given a small set of boobs, and unless I wanted to go through the surgery and cash to have them enlarged, I would have to live with those also.

Life went on, I married, twice, had two kids, that are now grown, and one with 3 kids of her own, and as I said earlier, not but about 7 to 10 years ago, the two things I FEARED MOST, were losing my hair for some reason, or losing my teeth. I had lost a "half of a top tooth" at 25, in a 4 wheeler accident. My dentist was able to save the tooth, added onto it, and it remained fine until about a year ago.

Then I was diagnosed after many years of all kinds of symptoms of having "autoimmune illnesses". I went through several different doctors and diagnosis before we hoped we are about on the right road. Yet, even now, 7 years after those first autoimmune issues came to light, I wonder each day if we are missing one or more of them.

I've began to see that "autoimmune illnesses, diseases, syndromes... they work in "packs", almost like wolves. They catch you when you least expect it, you are usually overtaken by not just one, but two, three and sometimes more of them. Even though they may have "their own set" of unique symptoms, for the most part, they usually have such similar symptoms, that even trying to make a proper diagnosis is impossible. That is why so many of us may change from one diagnosis to the other, like the wind changes direction. You may have a set of symptoms that "blinks like a red light" saying LUPUS! Then within months, weeks, or possibly a longer period of time, something shows that you also have Rheumatoid Arthritis, Sjogren's, Raynauds. Ankylosing Spondylitis, or other AI's like MX, Myasthenia Gravis, temporal arteritis, vasculitis and again that list can be almost continues into infinity. So, you may have one, two, or more of these conditions at any given time. Some may flare more than others, and usually after a deal of time passes, patients can usually know which one or ones are causing a "flare". Lupus is one for me that seems to cause me the most fatigue, mouth ulcers, a headache that is inflammatory, and nearly intractable. The only way to possibly "halt" it, is a huge injection of a corticosteroid, and a round of "step down" Prednisone.

So, the issues with Sjogren's as I watched was one of these illnesses, that no one seemed to take much "interest" in. I mean as far as my health issues. Of course part of that is due to not knowing a great deal about the disease. Other issues are that I believe most doctors, even specialists tend to be more concerned over vision problems, even the loss of vision, rather than on how it can effect each and almost every part of your body. "Connective Tissue" in the joints and throughout our bodies need "moisture" to keep them supple and usable. So, when Sjogren's comes aboard and takes that moisture away from our bodies, any and everything could be effected. Of course dry eyes and dry mouth. But, there is connective tissue in the joints, spine, between some of our organs, and any organ that needs its own moisture in order to function can be dramatically effected or altogether stopped from having the necessary bodily moisture it needs to survive. 

So, I as have stepped aside just a bit on my own venture with Sjogren's and how its effected my entire life, yes, it has created such a huge stigma for me, even larger than my "artificial knees, right shoulder, pain pump internally implanted, the scars from surgeries, and all of the other things that have happened to cause me to have doubts about my own perception of my body, my face, and how others see me.

I realize that my entire face has somewhat changed due to the dentures. Especially since the bottom dentures were "pinned down" last week. My mouth seems to be so much "fuller". Well, it is different. It has also effected my speech, how I say some words, and some I have a difficult time saying at all now. My eating habits are totally different. I felt my "diet" routine would settle back down to its own normal once the bottom dentures were more secure daily. Yet, now I am once again having to completely re-adjust to having them in, pinned down, and then how my top dentures "fit in" with the bottom ones now. My eating will never be the same. Many things I loved so much that I used to eat, I may never be able to eat again.

Between the horrid expense, which by the way, the bill after all is said and done, is right at $10,599.00. Now that does not include about the first 2 or 3 teeth that I had to have pulled out at first. Those are the ones that first broke off at the gum line. I went into my "regular" dentist and he pulled a couple of them before we even knew how bad my teeth were. But, of all things my own dentist has severe osteoarthritis, in both hands. It is so bad that there are many things he cannot do any longer. That is why I went to this other dentist after a couple of these teeth broke off. My own "regular" dentist just could not pull a back molar that had broke off, so then is when the digital entire mouth type of X-ray was made and then we saw that every tooth in my mouth was in one way or the other in the process of decaying rapidly.

So, you could add another $400.00 plus onto that figure above, and the whole situation was more like $11,000.00!!!! Plus, guess what? Just like many of you out there, I have NO dental insurance. And even though this was proven to be all caused from an "illness" and had nothing to do with my dental hygiene or any of that, I griped, fussed, threatened, cried, and begged to try and get a portion of this paid for by my health insurance. Yet, I never saw a dime. Even though I filed all of the claims myself, with all of the diagnosis coding and so on, my insurance refused to pay one dime on any of it.

Another little known fact, or was for me. Each dentist charges a bit differently. Some, charge in upwards of $25,000.00 or more, when ALL of your teeth must be pulled first. Or if you choose to try and "save" some of your teeth, which by the way I would NEVER suggest at all, to ANYONE with Sjogren's as bad as mine to "repair and save" some of your teeth, then just put in the others that were so bad in a partial. Bull!!! If you already have teeth that are "rotten" from the inside out, like mine were, no way, no how would I ever spend MUCH MORE MONEY to do root canals, caps, bridges and so on, only to have the others eventually fall out anyway. So, then you are stuck with another astronomical bill, and I've seen that type of work estimate at a definite $20,000.00 to well over $28,000.00 or more.

My dentist did two "treatment plans". One was to "save" what teeth he could. Do root canals, bridges, overlays, and then partials to replace the missing ones. That was actually HIGHER by about $3,500.00 over what it was to have them ALL PULLED and put in the dentures, including "mini implanted titanium pins" to hold the bottom ones in place. So, it was not brain science to me. Spend thousands more to "save" what I would lose anyway, probably sooner than later. Or go with the whole shooting match, hook, line and sinker... and hopefully be over with it, until "Gabriel blows His Horn"!

Now, as I've told this, I will say this once again. These "dentures" and having to have them as early as I've had to in life, has implanted its own "stigma" upon me.

OF course I've tried my very best to make "lightly" of it, by saying, WOW, now I have my "pretty teeth"! One of my dreams come true. Now, I will actually smile a bit in photos. Yet, underneath all of the lighthearted portions of it, still looms this "seething emotion" of just how much more will these horrid diseases take from me?

They take my energy, my brain at times, cause me to be ill more, have almost cost me my life back in 2010, have probably been the culprits in me having horrible, almost intractable headaches again. They have taken so many pieces of daily living away. By keeping me more tired, or causing me to move more slowly, not be able to think as quickly, or get dressed as quickly... the times I've had to postpone a family holiday celebration, or not be able to go out shopping. 

There is not one thing in life that autoimmune illnesses don't effect. Whether it is the person ill, with them, physically, mentally and emotionally. It effects those people around the person that is chronically ill. It can change the scope of relationships in marriage, family, friends and more. It can cause you to have to lose or quit a job. Your entire life completely is turned upside down and right side up. Often this actually occurs more than once. For with "each" diagnosis can come a new set of circumstances.

So, as much as I am "heavyhearted" at times about the loss of my teeth, how it happened, why it happened, and why there was not more done about it earlier in my life, I AM GLAD that I am able to have the dentures and my hopes are that they last the rest of my own lifetime.

Sjogren's, Dentures and the Ordeal of the nightmare money wise and pain wise to get "new teeth"...

Some Photo's of Me Recently after getting my dentures - I had never been one to smile in any photo's. I always hated my front teeth. I had "genetically" inherited my top two front teeth being "large". My Dad, my half-brother, I, and my son... and I am sure some of the other family on Dad's side all had the same. Plus my bottom teeth were not straight, and I had a 4 wheeler accident at 25 yrs old, that snapped the bottom half of one of those top front teeth off. I had it "built onto" and it stayed like that until earlier last years 2014, when Sjogren's took my teeth, quickly and quietly. It seemed it quietly came into my mouth, and within 4 months literally rotted about 8 of my teeth from the inside out, just leaving a "shell" that then broke off at the gum line. After having that happen about 4 times within 2 months, I went to see another dentist, who did a "surround" type of X-ray that showed just about every tooth I still had were also going to do the same thing. It was just a matter of a brief few months, and all of them would be falling out at the gum line, leaving me to have to have them pulled. So, I began to "weigh" my options that honestly, were slim to none. Even though it is an "illness" that literally rotted my teeth, and had nothing to do with my own dental hygiene etc... I could not get my insurance to pay one red cent on any of the massively expensive and time consuming work it would take to get me over the "Sjogren's rotting teeth" out of my mouth.

You are talking about somewhere in the neighborhood of 10,000.00 to actually more like 15 to 2o THOUSAND DOLLARS of dental work. I had to have ALL of the rest of my teeth pulled. Then due to my bone structure , the Sjogren's, the medications I have to take for the RA, Lupus and so forth, had also had its finger in the loss of every tooth in my mouth. That began about February 2014, and I still am not completely finished with the entire ordeal. After pulling sets of 5 to 7 teeth at one sitting, then they made my dentures, and pulled every last one in the top and bottom that had been left up front and visible. So, that was 11 TEETH in ONE sitting, and then they put the DENTURES RIGHT IN OVER THE TOP OF ALL OF THOSE STITCHES AND PULLED TEETH!! Surprisingly, it was not as painful as I thought, but for weeks and weeks and weeks, and even now I struggle about eating. There are certain things that in no way can I bite into or eat. Most everything has to be finely chopped up, even tomato and lettuce. I have to tear most things apart  in extremely tiny pieces. With the dentures I also don't have as much room in my mouth as I used to. Plus, I still lack going back and having "mini implanted little screw like devices" put into my lower jaw in four places, so that my bottom dentures will fit securely on those and not be moving around all the time. There is no way, I can keep them in place, without having those put in. So, that is another at least 3,500.00 for the four little pins and then adjusting the bottom dentures to fit down over those pins when all is finished. It is pure insanity, money wise, time wise, pain wise and the amount and length of time it takes to complete the entire ordeal. So, now after so many years of wishing for "beautiful teeth" so I can smile, I have them. I just never figured it would be because of some disease that ruined my own, and I would have to deal with a full set of "false teeth" or dentures. So, when you "ask" for something, you may get that "wish" fulfilled someday. BUT, remember it may NOT BE the WAY YOU HOPED for IT TO BE! So, here are a few new pics since my dentures have been put in.   

LOL!!!! Notice I STILL have a difficult time "smiling"... so many years of not because I hated my teeth... so breaking the habit is hard to do.  Rhia













                                                  

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:   http://www.sjogrens.org/

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:        

http://www.medpagetoday.com/MeetingCoverage/EULAR/46302?utm_source=cardio-meetings&utm_medium=email&utm_content=mpt&utm_campaign=DCH

More on the Continuing Saga of "Rhia's Law" If it is going to Happen, It Shall Happen to Rhia!!!

Honestly, when I go back and read some of the things that I've been through, put up with, did do, did not do... and all of the "happenings in my life"; it is almost impossible to believe myself Yet, I am the one who is and who is going to go through them.

Just one, is insanity! When you decide to "string" them all together, it almost feels like I am writing some fiction novel. Some of the things that have happened, it just seems impossible that any one human could withstand the pressure, stress, and the trauma I've endured. What I am about to include below is just a week or so worth of "happening. Honestly due to the "brain fog" I am just in a place that I can't even type. I find myself misspelling everything, or it is like I can never have my fingers on the right keys. Now this morning, I've lost my "coupons". Yesterday, I went grocery shopping and I had them with me. I remember having them and in fact I thought I had laid them down in one of my reusable bags. I was going to look through them this morning and they are just gone! Alone with the "sales papers" from WalGreens and and CVS, etc! I swear I had left one in the basket and someone really snapped those up. Those coupons, if you really think about it are almost like "money". when you are saving 50 cents, a dollar, 2 or 3 dollars, 25 cent 5, 4, 6 of them. Believe me I've walked out and save 40% on grocery bills. And at WalGreens and CVS, there are times I actual "save" over 50%! I have came in and the total I saved is more than I spent! Anyway, of course, there but it is true and a great tip. With all of our market products going UP, UP, UP and no DOWN in sight, every dime is going to help in one way or the other saved.

Before I copy and paste my latest rant on my own life's mysteries... I have a question for you...
WHY when you go into a DOCTOR'S OFFICE do they ALWAYS ASK YOU, "How are you feeling or doing today? NOW if I were doing "okay" I would probably NOT standing in this office!!!

I know there are times we go in for a "wellness" check, etc.. so we might not be extremely ill. Yet, when they look down on the computer or think back that you have called in that day for a "sick visit" then asking how you are is just is about stupid, as spitting out of the back of a truck going 30 miles an hour down the road!

I've come to have this statement "embedded" in my mind! And it stands so True for Me!

"It's Damned if I DO!!!! "And it 's DAMNED if I don't"

"And Now for the rest of the mess"

I wanted to let all of you know I've received THREE letters back from Senator Cornyn on 3 emails I'e sent him. He has definitely read what I wrote or someone in his "team" answered them, and just make it appear as if the Senator is "listening". He has sent emails in regard to "health care", "the payment doctors are "not getting paid" in regard to especially Medicare issues, and also is addressing more money going for research  & the allocation of funds to  National Institutes of Health and the Centers for Disease Control and Prevention, to try and help with all illnesses especially those of the chronic nature such as Lupus, RA, Diabetes and so forth. I was a bit hesitant to be "thrilled" because he is usually not one of the Senators that I really agree with. But pieces of what he said in each email gave me a bit of hope that there possibly maybe changes of a good nature coming along the pipeline. I think the government in general is seeing that they HAVE to step UP to the plate, pay our "good physicians" properly, and give them incentives to continue to keep their practices open. Without any type of government aid of any kind, whether it be a larger pay from Medicare and Medicare Advantage Plans, or incentives due to being "doctors that are superior" in helping their patients, while paying staff properly, keeping the good nurses on, and yet keeping costs down as much as they can without "harming" patients or those who work for them and need a decent salary, we are doomed! We already have a drastic shortage of MD's, when it comes to Family Doctors, and those who are regular MD's, who are not in the "specialized" business. Without our PCP, (Primary Care Physicians) we would certainly be in huge trouble. And without incentives for those types of physicians to be able to know when they graduate, they can pay off all of their student loans in a reasonable amount of time, be able to pay a staff and have a decent practice without feeling like they must take an over abundance of patients just to survive paying loans off, paying for their practice, a family, the insurance that is so high that goes along with being a physician, and also be able to take people's insurance, including Medicare, Medicare Advantage Plans, and Medicaid... then Doctors will NOT go into a General Practice. Our doctors are "specializing" us right out of the good old days when our physicians did it all. They saw you for a cold and the flu, they delivered babies, they took out gall bladders, they saw you in the ER in the middle of a weekend to sew you up, or to see you in the middle of the night when you were ill.  Those days of doctors are gone. Well, not entirely. Now we are seeing these new types of practices where you "pay" a certain fee a year and you get those types of services. But, usually it is a fee you pay up front each year, and you do not file insurance and so forth. They are more known as a "concierge" type of physician.  Yet, these types of physicians and their type of care does not come "cheap". Those annual fees are extremely expensive, and usually only the more "lucrative type of patient" can afford that type of coverage. So, that still leaves us without our "old fashioned" family physician. It is a huge and looming situation that those of us that are in a "chronic illness" type of situation see the "downfall" of the medical world around us. We cannot get the care we need, We cannot get the proper diagnosis, the medications, the labs and tests, or the proper care of any type, due to the high cost of it all. And even those of us with insurance, Medicare, a Medicare Advantage Plan, Medicaid and so forth are "losing the battle" also, because again doctors are not getting paid by these entities without a fight! Thus, they cannot keep their doors open to their practice without getting paid by those companies. Then they drop the companies and who can afford to pay out of pocket cash for treatments and medications? Have you looked lately at one of your print outs from your prescriptions when you pick it up from your pharmacy's? Like Wal-Greens, WM, CVS and so forth. I look at what mine say as far as what I "paid" versus what it would have cost me without my "insurance" paying. Medications that are even generic with costs of  $500.00. $750.00, $2,500.00 for a MONTH'S supply!  There is absolutely NO WAY those of us chronically ill or just ill for a flu and so forth can afford to pay those kinds of charges out of pocket for medications! It is insanity to think we can. Even "richer" folks would go broke paying $3,500.00 a month for a medication. But, my Aunt's cancer medication is like that. In the first place it is difficult to get, and in the 2nd place it is something like $4,000.00 a month, for 30 pills! Why they at one time were what I would call "well off"... and even at that, there is no way that they could afford those kinds of costs on medications! They have found help that does pay for the medications, but not all are the fortunate, So, WE, and I mean ALL of us, are going to have to do OUR PART, and let our thoughts be known. We have got to stand up as a nation together, solidified, and let the insurance companies, the government, the pharmacies, doctors, and pharmaceutical companies know WE are NOT going to take this "mess" as an answer anymore. It is time to find a solution, to be finding treatments, finding answers and diagnosis more quickly, getting doctors trained and better equipped to find out what is wrong, and get us properly treated in the nick of time, not after it is too late. Like myself... due to the Sjogren's, which honestly, up until the last year when all of my teeth are literally rotting and falling out of my mouth in pieces has any doctor been concerned over the Sjogren's. If I do not mention it, they never say a word. I am the one that had to research it and ask to try the 2 medications for it. Which neither are very good, but I am on one of them. Now, I face Lord knows what, There is so "good" solution honestly. I just had another tooth pulled Monday, and I am sure I face at least 6 more, maybe even more than that that must be pulled. There is no hope for them. Then the few I have that are "patched" just to keep them there, are possibly not long for falling to pieces also. Because none of this was addressed 7, 10, 12 years ago, before the decay set in, now it is TOO LATE. And come to find out (first of all I NEVER wanted dentures and the thought of not having my own teeth still just almost makes me sick to my stomach) even those... even the latest, "implants" are really NOT a GOOD SOLUTION for anyone with Sjögren's!!! Due to the Lack of saliva, those are difficult to deal with in the mouth. I still must find ways to keep my mouth moist constantly, by chewing certain sugar free gums with Xyitol in them, or sipping certain things like green tea, water, things without sugar and without acid in them. But even at that, still it is difficult to do. Plus the entire thing with the dental implants, is not done "over night". It can take up to a YEAR to completely finish the process. Which usually involves 2 surgeries, to get the implants in place, maybe more if your bone is not stable in the jaw, thus bone implant must be done first, then the implants put in, then the special dentures that "snap" down on those implants made to fit properly. So, it is a huge ordeal, and expensive one and one that takes time to do and to heal. It is insanity!    this is just one piece of the puzzle, and this puzzle is more than 1,000 pieces. It is more like 10,000 pieces and growing each day. The ONLY end we will ever see in sight is to stand up and tell them (our Senators, Our Representatives, Our Government ... all of them) we want better, and we want all of this insanity stopped! We deserve proper health care, at a proper price... and our health care workers deserve a proper salary, with decent working times and decent working conditions... it is a vicious cycle and it will NOT end unless we stand UP and MAKE IT! ONE VOICE can move mountains... think what 100,000, or a MILLION voices can do!                                                        

Trying to Absorb Everything that seems to be "bouncing" my way...or getting run over?

http://funds.gofundme.com/index.php?route=fundmanager

Now I am sure you are wondering what the hell I have put this up for. Unless you've been to my FB page, or have seen the latest "venture" that the IFAA (International Foundation For Autoimmune Arthritis), about now you are scratching your head figuring what else I could possibly have my fingers involved in now.

Well, the story began when I "found" Tiffany the Founder and CEO of what came from a bracelet, made with a bit of leather, a belt buckle, and was a "movement" until now they stand proud and tall as one the instrumental foundations of Patient Centered Research in Autoimmune Arthritic Illnesses. So, what does that mean to me, and then of course what does that mean to yourself? That is a very long answer that shall become clarified in the days to come, and in my book to come also. A portion of my book, will be about my relatively "short time" I've been with a Foundation, that I have watched make almost impossible changes in the way others, including doctors, researchers, patients, and people from around the globe sit up, take notice, and SEE the REAL issues that "we" the patients deal with daily.

None of our lives are "daily".... or the events in them are not for sure. We may get up in the morning, much more slowly than anyone else, "walk" some of the stiffness out. Next may come a cup of coffee, that it takes all of your energy in both hands to pour it in a cup. I've not truly been able to get a "grip" on the entire next few months coming up and all that is involved, until last night. 

After I have spent the last 6 days at least arguing over insurance, my biologic medication, the infusion center, driving my doctors office crazy, along with myself, it hit me square in the face, that in 6 WEEKS I will be going to Washington DC! Here I have been wanting to do this all my life. It has been a dream, for me to stand in front of the White House, hopefully not speaking to just myself, but someone even if people just coming to be those to take a look at the White House and happen to "hear" my story. So long, I've thought about what I would say, how I would say it, and what I would want to get across to the officials in those buildings. It is almost like trying to reach the "Pope" or a movie star, or anyone that is in any type of place of "authority". Your chances of really getting to even shake their hand might be slim to none. Much less get their attention long enough to gripe about your illness, what the government is NOT doing to help it, and what they are DOING WRONG to make it worse! My thought has been unless you have lots of money to "slide" under the door of any one of our local, state or federal officials, you might as well, jump in the back of a truck, while it goes 30 miles an hour, down a dirt road and spit... And when the spit lands back on you mixed with dirt... that is just about how much you would get while the officials in Congress scrape you off of them like they scrape mud off their shoes. 

This from here down was written this morning... I am have a very difficult time between what I feel are flares of RA/Lupus, and way overly stressed... I am a total mess, mentally, physically and emotionally... I am wondering why I even try anymore... it always turns out to be a mess for me, rather than a help.... thus the reasoning behind this post.. (I also began posting the bottom portion of this on FB and changed my mind. I decided to post it here, and just put a link in to FB...


LOL!!!! I have been seeing the new "T-Shirt" on their Foundation's Website and wondered about it. When I was filling out the registration yesterday at the end it asked for your "T-Shirt" size! That is when I got the hint we would be receiving one! Honestly, over the past week I've been really struggling with all of this. I have actually began a blog post that I am still working on about my own internal, some physical, but more "mental" revelations about how quickly all of the things that are happening in my life right now are coming on me so very fast! Much of it "good" things, but entangled in the "good" are some challenges that I am definitely struggling with. I have just taken an immense "slide down through the rocky side" of my "mountain" of autoimmune illnesses right at this moment. Since I've not gotten the Rituxan infusions as I should have weeks ago, all of my RA symptoms have hit me like I just ran into a brick wall. I know I am in not only a RA flare of sorts due to the part where the bottoms of my feet hurt, especially when I first wake up and try to put my feet on the floor, to the stiffness and pain in my toes, thumbs, ankles and fingers, which is making trying to type a nightmare. it is not that it is so much "pain", I do have that, but it affects my "ability" to type. I hit wrong keys, I am constantly correcting myself, or having to back up because I've spelled something incorrectly as I typed it, and so on. Then it the "mental" true "brain fog" that this time has me terribly aware that these illnesses are takng their toll on my body in several ways. My ability to type issues are also because of the fog. I tend to try and spell words, or type normal, everyday words, and cannot remember them, and have to stop and think about what I am trying to say, or again due to the stiffness it seems my fingers are constantly on the wrong keys. And I am at the moment "brain and physically "fatigued". I feel as if I have mentally been in a prize fight. It is just almost painful to think. I want to just scream I can't take anymore!!!!!! I AM SO UPSET about NOT GETTING MY RITUXAN, that I could scream! It is one of the most frustrating situations for me. That is the ONE biologic, that has "worked" more for me than any of the others. There is just so much going on right now I feel like I am on a spinning top, and each day it goes faster and faster. I am battling the insurance even over just getting the Enbrel. I found out it is the ONE biologic of TWO that Humana will pay for. Yet, I still have to Jump through every hoop you can name to even be on that. I even got the prior authorization myself and faxed it to my doctors office myself to make sure they had it. And now I've called the "specialty pharmacy" two days in a row, they see the script and yesterday the woman on the phone says, "well, it appears maybe they got the "prior authorization form" but they are requesting "more" information from your doctor??? What the hell more information do they need? I've been going in this circle with them now for at least 4 years and each year it gets worse, rather than better. When I first began all of this autoimmune illnesses whirlwind, Humana, rarely questioned anything. For the most part, even all the surgeries I went through even 8 in ONE YEAR, there was no hassle. Many of them were performed and the insurance never even need a "prior" request on those. Then it began about two years ago. I began to notice my doctors would try to send me to a specialist, and the specialist would not be a "preferred provider"... and I had not had that before. Then they would "piss and moan" over certain medications with these "prior authorization" forms... not many but a few ... year before last, it was SO BAD that the first part of the year January and February, they made me get a "PA"(Prior authorization" on JUST ABOUT every medication I had been on for 5 years!!!! Heart med, Muscle spasm meds, you name it, they wanted this "PA" form for it. I argued with them and the answer I ALWAYS RECEIVED FROM THE INSURANCE WAS "it it MEDICARE(the government) MADE ALL THESE CHANGES" thus "they" the insurance company HAD TO request these even on medications for my heart, blood pressure, stomach and so on. That was the most asinine thing I had ever heard of. I spent hours and hours and untold hours getting that nonsense stopped! My doctors of course were all annoyed, and I don't blame them! They "put a patient" with high blood pressure, or stomach issues on medications, they are on them for years, then all of a sudden here comes the very insurance that paid for them asking for the doctor to fill out forms? In the first place the doctors do NOT have time for this. In the 2nd place it as ridiculous! Well, all of that finally went away I think. Come last year I noticed ONLY if it was a medication that was new to the patient and for the most part a "specialty" med they would then request a "PA" form. Yet, even then, the doctor filled it out, faxed it in, and I had my medicine quickly, there was no wait, there was no 72 hour "review"... and I certainly did not HAVE to wait 10 DAYS or more for my "prescription" to be processed once all of the other stupid paperwork was done!!! To add insult to injury, then, me not really realizing that Humana WILL NOT PAY for any "specialty" biologic medication (even though on their website they will "price" it to you at your local pharmacies", and I had checked prior to all of this and knew my local Wal-Greens did carry it and they had a specialty department that did the paperwork and then would let the pharmacist know when it was all done and when he could fill the script. Well, guess what? Then I come to find out that Humana will NOT pay for the local pharmacies to fill these medications, it MUST GO through Humana's own "Right Sour Specialty Pharmacy"... so guess what that means, more delay, and it was delayed even further because the "local pharmacist" could NOT understand I HAD to have the prescription faxed over to Right Source!! I asked 5 different times to "fax" it to Right Source and kept continued to try and "run it through" to the insurance! And of course the insurance kept "denying" it!!! It he done it a hundred times, Humana is NOT going to pay for it, unless it comes from "their own" Specialty pharmacy! Wonder where the kickbacks etc go on that one?????? Of course FINALLY I honestly think my doctors nurse faxed the script herself to the correct place Monday morning. Then she gave me the fax number their and reminded me that she knew a "prior authorization" form would need to be sent to her and filled out, then sent back to Right Source! SO, I was lied to because Wal-Greens told me they had gotten the "PA" form. If they had then there would not be a call for another one I was told at Right Source, because it would have been in Humana's website, thus they would not NEED one, the one would suffice!!! So, let's start the phone calls and the whirlwind again! Now I had to "dig" through Humana's website (which I already knew the drill on this one) find that form, get online and fax that form to her (the nurse) at the doctors office. Because if I had WAITED for then "pharmacy" to request it, that might delay it for weeks because that mean the doctors office would have to dig it out, fill it out, and send it to Humana for approval. So rather than jump through another 25 steps, I tried to save a few and sent it to her myself. Which I am not sure even made a difference. For two days I continue to get the same response. Well, it looks like we are "waiting" for something... in fact yesterday's phone call to "Right Source" is what led me down the track to even when we receive all of the information it will take "72 hours" for review? What more is there to "review" when you have everything but it signed in blood and stamped by the President stating I need this medication!? And it just continues to float around and around within the spinning, ever spinning, world of what we should NOT have to go through! Now, with all of this, plus I KNOW without a doubt, it is not long, until the Sjögren's has taken everyone of my teeth and crumbled them to nothing. I have at least 4 right now, that are just "pieces" of teeth. I barely have any jaw or chewing teeth at all. And the ones up front are so fragile I fear biting into anything... I have my 4 bottom front ones that "so far" have not shown or I've "felt" them having issues. But that is just the problem. They can "seem" fine one day, and the next you are eating, and suddenly there is a "space" where part of a tooth was! No Kidding! It is insane. That is usually how it happens for me. And it does not have to be something difficult to chew and so on... just normal eating, and then my tongue will suddenly "know" something is missing... sure enough an entire side, or back of a tooth will be totally gone! I have two of my very back jaw teeth, one of which he could not even "fill it" permanently because the cavity was so deep, he said I would not be able to withstand the pain because of it being so near the root. So, he put some of the "temporary" type of filling in their but it has already itself became partially gone... and the one just like it began hurting and feeling "odd" yesterday, thus I am almost sure it will have to go soon also. Right now I would bet I have 6 that either need to be pulled or slightly a possibility a filling may help them. But since it feels as if an entire side of it is gone, I am betting all of them but possibly one have to be extracted. That would have me literally with maybe 3 jaw teeth in the top, and my 6 or 7 top and bottom front teeth... and those in the top are just "patched" together... they are trying everything to keep those in as long as possible.... So, I ONLY "saving" grace in the matter of my teeth is that there is a possibility due to all of this damage being from "Sjögren's. the insurance MAY pay for a specialist. In fact one of the "nicer" women at Humana even gave me the name of a doctor who is more of an oral surgeon that might be able to "screw" the teeth into my jaw bone (seeing that my jaw is not totally messed up with the osteoporosis) because "dentures" are NOT the answer for anyone with Sjögrens'. Due to no saliva or very little those will not "hold" properly in the mouth. I just am not able to fathom the amount of pain, expense, and what I will have to go through to have these teeth "fixed" or something done with them. Hell a "root canal" and crown is over $3,000.00, much less that kind of thing to be done! So, within the spinning web of ALL that is so amazing, and yes my birthday is Saturday... all of the horrid nightmare of bad stuff keep putting a damper on the good things coming my way. I am ready to throw in the towel... and just sit on the sofa, and forget it all. I've fought this battle way too long, and way too hard... and I am reaching the place that that mountain top is way too high for me anymore... I don't know where to turn... and I certainly really do not want to go anywhere over the weekend... I know it is planned to go, but between money, and the operation, and me not feeling well, I am just not in the state of mind to go anywhere right now. Hell i need to go grocery shopping and I'm having a huge struggle in trying to convince myself to go and do that. I am just tired of it all.....

Great News on the Autoimmune Illness Front - "Molecular "Gene" Dance in Autoimmune System

I had just got through emailing one of my friends who also suffers from the horrid effect of your teeth from Sjogren's.  Then I find this article! Of course this is not "just Sjogren's" but can mean another advancement in the world of "changing the face" of ALL Autoimmune Arthritic Illnesses and more.

Great Article!!!



http://www.medicalnewstoday.com/releases/270928.php