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 and Dental Issues!!! Needs to be a Priority!!!!

I realize that this is in Oregon and one of the dentists that is trying to get ORAL HEALTH a priority in Oregon's Health Authority http://www.oregon.gov/OHA/Pages/index.aspx I gather much like Texas and our (DHS) Medicaid and so on, this is kind of the same thing. The HUGE ISSUE and of course I ran into this right middle of the road like a brick wall - that even though ALL of my DENTAL ISSUES were caused by an Illness SJOGREN'S - NOT ONE Dentist even took my Medicare Advantage Plan or any type of Medicare Coverage plus even if I could have went through numerous appeals, Humana probably would have not covered but about 40% of the 15,000.00 PLUS - (turns out to be over 15,000.00 due to the dentist "leaving off" the charges for the LAST 11 TEETH pulled the day my dentures went in... which was another $147.00 EACH for the 11 - making it another about $1,517.00 or so OVER the ORIGINAL "treatment plan" I agreed upon and signed before the work began. This is a total outrage!!! There is NO WAY ANYONE, and most certainly MOST ON MEDICARE OR DISABILITY can AFFORD OUT OF THEIR POCKETS $15,000.00 IN DENTAL BILLS!!! But. I had NO CHOICE!!
As I have posted over the last year when all of the mess began with my teeth suddenly "rotted" off at the gum line and then falling out! I had 4 of them within 4 months happen... well after the "whole mouth X-ray" revealed ALL of my teeth were doing the same.... So, here I am with all of these Autoimmune diseases, already a HUGE chance of infections due to the illnesses and the medications I am on... and by the way that $15,000.00 was much higher when I went for 2 other opinions!!! That was the Lowest in the ballpark figure...
Anyway, I have told myself and said it here also... WE MUST FIGHT FOR DENTAL HELP!!! When a chronic illness brings on this kind of destruction, there should be coverage through medical insurance... the proof of how the teeth "rotted" showed it was definitely Sjogren's that caused it... so there is NO question as to a medical issue causing the dental stuff...
Anyway, this article caught my eye from Oregon... and I wanted to share this with you also... this is another HUGE PRIORITY (among ALL of the others we have with Autoimmune and Autoimmune Arthritic Illnesses....

http://www.oregonlive.com/opinion/index.ssf/2015/03/lawmakers_should_commit_to_sta.html

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













                                                  

As another year begins, Lupus, RA, pain, and trying to put those aside to be able to do something Outstanding!

An odd title, to say the least. But, everything about me, that I do, say, feel, see, is always "odd".

I've finally moved stuff around today, and got my stair climber exerciser in my Living Room. I put the stationary bike in the bedroom, because I desperately need an "entire" body workout starting today.

I've allowed myself to eat way too many things I should not, sit on my butt and find other things to occupy my time, and make excuses for not exercising. Thus now I "feel" the weight, see it, and I can tell that due to first of all getting lax on the walking, the weather being too cold, and lack and laziness of going through every day and every meal, mad and disappointed that I am honestly not able to eat as healthy as I usually do. The dentures are truly a huge hindrance depending on what you are trying to eat, thus as I said in a Facebook post, the very things that I loved and are healthy, I now cannot eat... like apples, fresh veggies... and the other things that are low in calories, high in nutrition, and don't let you get saggy and baggy...

Holidays are always difficult. There are so many goodies out there to temp everyone, between, cakes, cookies, candy, and the rest of the things... that temptation gets the best of us. Then, when you can't eat everything you are used to eating... (and you would be totally shocked at what some things are that I can or can't eat with these stupid things in)... then you really just get to the point of not caring what the heck it is... food you just see as food... and the rest of the time you are fighting to keep the stupid bottom denture in or trying to keep them from rubbing a sore spot in your mouth.... and so forth.

So, the entire thing I was SO HOPING would be out of my face by Jan 2015... and yet I am still facing the mess... and not anywhere near through, and certainly not anywhere near wanting to drop that kind of cash into a damned dentists or anyone's lap for sure...

Why does that type of stuff have to be so freaking blazing expensive???? I mean I realize they have an office, and employees and equipment, but hell I don't know many people who could REALLY AFFORD to have this mess done completely and have the "dime" to drop on it all at once... and I look up and it's almost 5:00 pm... where the hell did this day go to????

More to come tomorrow... Off and out for now...

Primary or Secondary Sjogren's - Not getting enough attention, research, medications and answers!

 http://www.ehow.com/about_5515797_sjogrens-lung-disease.html

http://www.ehow.com/about_5501450_stages-sjogrens-syndrome.html

 

http://www.sjogrens.org/

I 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.

Catching Up!!!!

There is a great deal for me to "catch up" on as far as the blog. Many of you also read Facebook, and I had posted a bit there, but I want to try and post here, then put a link to it on FB all the time.

I finally have my teeth completely gone, and a set of beautiful teeth, like I have wanted since I was 15 years old! They are "fake", BUT hey they are beautiful. So, always as they say, watch what you ask for. :)

I will be about 90 days out before the "mini implants" go in and the dentures are modified to go on those. Thus instead of the bottom one especially wanting to come out, they will stay in place, not rub sores on my mouth etc. Don't get me wrong I love them like this! I can finally smile!

Jim is slowly improving. We are having all kinds of heck getting him a couple of the doctors he needs that will take the "insurance" he is on. As far as the "wreck" it is in "litigation" I guess, well heading that way, with both of us giving depositions a couple of weeks from now... and then it is just depending on the other parties involved how long before any type of decision is brought to us... So, we shall wait and see... I DO KNOW that a couple of the parties involved have NOT cooperated AT ALL! To not one certified letter, to no visits, to nothing, and I am not sure they have even said they will come to their deposition times. So, again just a waiting game.

I have been so thrilled with all of the things going on in Arthritis.org! I have been taking all of the classes to be an "Ambassador", and the last one is next month! That is when we are told we are "accepted" or not, and also if there is anyone who qualified for the "Platinum Ambassador" title. So, between emailing my Congressmen, going to a Town Hall meeting yesterday in fact, and so many things I have done to help the cause.... and made some incredible "friends" and met some awesome people along the way.

 I have a couple of other projects I am working on, trying to clear my schedule, so I can get back to what I know and love, besides advocacy... my blog and writing.

I will definitely try and get back tomorrow, post more, and give you more information... we have an exciting election coming up and much of this that is involved is for "We" the people, thus we need "The  People" to get up, go down to where you cast a ballot and VOTE! Griping about it, making small or large talk about it won't fix it... it has to be YOU AND I... all of us getting Congress, Senate, House and the President and Chief of Staff, along with ALL of those that are in politics and are supposed to be representing us! So, get ready, because that is going to be my mantra for the rest of the next coming months!!! GET UP, GET to the VOTING place, CAST YOUR BALLOT - called  VOTING! Believe me even though we may not think so, OUR VOTES DO MATTER!! WHETHER ONE OR MANY, THEY DO COUNT!!!

Almost Forgot - Link to FB to See my New Teeth! Also other infor under a post about down!!

https://www.facebook.com/photo.php?fbid=10203697836581272&set=pb.1078281265.-2207520000.1409002262.&type=3&theater

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....

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

... cont from post on FB...  

...is 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