"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Such an important thing - there is certainly NOT enough education, even with the medical professionals when it comes to Sjogren's. I in fact even after trying everything in my power to fight the autoimmune illness, lost ALL of my teeth to Sjogren's. It was a very hard ordeal to go through and even today, it remains something I feel "odd" about,although my dentures are very pretty. But, each and every one of my teeth were "eaten" from the inside out, and no signs of Sjogrens appeared to be causing issues, until suddenly I had 3 or 4 teeth completely break off at the gum line. I went in to see my dentist, who actually sent me to another dentist due to my own having also issues with horrible arthritis that is not allowing him to do nearly as much dental work. He had been a dentist here locally for gosh 30 plus I am sure... anyway, I was given a "full round" scan... and inside just about every tooth, you could see that basically all I had was a "shell" left... thus after over a year of pulling them all, and allowing all of that to heal, along with a couple of dry sockets, then one of the tiny cartilage bones between my maxillary sinus passage was pulled and thus a tiny hole that they call a "communication" happened. This I had to have that "repaired" two times, then allow it to completely heal over before I had the final teeth removed, and the dentures put in place. After that, I had to wait another almost 3 months for the bone and all to heal. Then I had the "mini implants" put on the bottom dentures to hold them in place... besides all of the time... the COST is ASTRONOMICAL!!! And even though it was caused by a "medical illness" I could never get a dime out of my insurance for any of it... just insanity... and at the very LEAST that type of thing is in the ballpark range of $12,000.00 and usually much more depending on which dentist and what your complications and so forth could be...
Here is an article that gives some answers to questions about Sjogren's...
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.
REALLY have been pushing about Sjogren's now for a long while. It seems
I never REALLY had ANY of my doctors take it all that seriously, even
as many times as I brought up the dry mouth, dry eyes, all of the mouth
lesions I had and so forth. Then when only about a year ago, I began
having my teeth literally rot off at the gum line and fall out, I began
to see them a little more concerned. YET, I am STILL THE ONE who really
pushed for the medication, which for Sjogren's there is only two. I
tried both and am on Pilocarpine and have been for a long while. I spent
several years chewing gum with no sugar and the Xilytol or however it
is spelled in it, because it was supposed to HELP with moisture in the
mouth, used eye drops and still felt like I cannot talk very long
without being hoarse and sometimes losing my voice, or if I go anywhere,
I have to talk something to drink... not even to the Wally World, and
if I am going to shop, that means picking up a bottle of diet Sunkist,
or green tea or something, so I can drink it as I shop. If I get in the
car to go anywhere very far away from home, I go with a drink and gum.
Well, of course ALL of what the few teeth I had left, by the time we
finally found out how much damage was done, did make little difference.
The "complete surround kind of special X-Ray" of my mouth, teeth, and
jawbone, showed 99 percent of my teeth already going to rot out anyway.
Thus as many of you know I went through the torture of having the rest
pulled, fitted with dentures, of which AGAIN due to the Sjogren's, the
bottom ones won't "hold" at all. You also need some "moisture" to help
keep them in... the top ones do fairly well. I guess I have enough with
the "suction" of them, along with the powdered Fixodent that goes on
them, for the most part they stay in fairly well. So, I had to wait at
the very least 90 days after they were all extracted before we could
even think about the "mini implanted" little pins that my bottom ones
will be fitted on, after they are implanted down into my jawbones in 4
places. Then my dentures will be "modified" to fit down on those pins
which should hold them into place. I also found out, that the top ones
they "usually" don't pin, which I thought they did. BUT, if mine won't
stay in as well as they should then I look at putting 4 MORE on the
top!!! Which will be ANOTHER OVER $600.00 FOR EACH PIN!!! Of course I
still have the "oral/maxillary fissure" which sounds horrid, but a small
hole as I have said before between my mouth and sinus passage caused by
a root to pull a hole in it, when the tooth was extracted. So, that
also is contributing to the top one coming a bit loose at times. Air can
get in underneath it from that hole and then it makes the "grip" it has
to the pallet of my mouth break loose. Anyway, back to my issues with
Sjogren's. I REALLY feel as much as I PUSH for RA, Lupus, Raynaud's,
Sjogren's, MS, FM... and other autoimmune illnesses and/or rheumatic and
arthritic diseases, that Sjogren's needs to truly be addressed much
further also. When it can truly cause as much damage to vital organs,
eyes, mouth, teeth, stomach lining, the esophagus, swallowing, drying
any "form" of mucous membrane, plus now I read that there is about a 50%
CHANCE OF DEVELOPING NON-HODGINS LYMPHOMA, if you have Sjogren's!
Women, of course tend to me at much higher risk due to the Sjogren's
being Autoimmune in Nature. So, as I begin to think about my new book
that I shall be writing on over the next year or so, and doing my part
as far as helping to be a voice, to advocate, to be an activist,
volunteer and Ambassador, for I feel ALL of those are very crucial also,
I am going to be trying to learn a great deal more about Sjogren's,
both primary and secondary. I also would love to hear from any of you
that have it in either way. I am going to post this on my blog (by the
way I am waiting to see some comments and posts from you guys and gals
also)... and would love to have some of you jump on the band wagon about
Sjogren's. It can be a highly dangerous, and sometimes deadly illness
in itself. Plus you can also have Celiac Disease due to Sjogren's too.
I just had to show these off. I will of course get a much better pic of myself with them next time I am dressed and have my makeup done etc... They should be incredible for the amount of bucks they cost... and I still have more to go in about 3 months. In order to stabilize especially the bottom denture, due to the Sjögren's, we will have to do the "mini" little posts implants that the dentures will actually slide down on to keep them in place. That way I won't have to be so concerned about them staying in place, plus I will be able to eat like a normal person again hopefully. I know all of you are busy with kids back to school, etc... vacations ending, and back to where we all go once Summer Time comes to a quick stand still.... we are still in the middle of the law suit about the wreck... Jim finished PT/OT yesterday thank goodness... that was 8 weeks of 2 times a week that took lots of time up that I lost when I could have been doing more useful things. But, I kind of insisted I take him for the most part, so I made sure he was taken care of and not having to wait on some transportation to pick him up early, and then be late dropping him home... but he if he does decide to go back for another round in the future it may be that we have the transportation bus pick up him to take him and bring him home... I have LOTS of catching up to do, both on the house, on the computer, for my writing, for my advocacy..... ad all of the other million and a half other things I need to get done..... I promise to be "fixing" my blog better... I hope now can SEE where to POST a COMMENT... am trying to make it larger and a different color so you know to click it..... thanks all for standing by myself and by Jim and all of my family through this... you guys and gals are the greatest....
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.
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.