Sunday, July 20, 2014

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

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

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

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

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

Friday, July 18, 2014

Cute Story about Neighborly Neighbors & Their Friendly "Battles" Over the Years

I debated about posting this here first, or putting it on my blog with a link to it here. But, for now I will post it here because it is a "cute" little ordeal that has actually been going on for around 50 plus years. My Dad & Mom lived in the very first house my Dad had built in 1950. It is tiny. 2 small bedrooms, a small living room, a very small dining area that also is where the washer and dry are, a fairly small kitchen & alas the bathroom is just like a tiny box! We are talking about just less than 1,000 sq. feet! Back then that was in some ways considered HUGE! Many just could not afford a "huge" three bedroom brick mansion, with two baths and an attached garage. I begin telling this because you kind of have to get a bit of "background" about the neighborhood, & get the jest of why this is so freaking funny, especially to me. Mom & Dad had (and Mom still has the woman) a couple next door to them that they had known from day one of being there. Over the years they had cook out's together, went dancing together, Dad worked with the husband for many years at EBF etc. The wife, had been a nurse (at one time the only one that delivered babies with the doctors), and she was extremely dedicated and even after she retired, she went back to work for one of our doctors, until he retired, and she had too many issues health wise, so she had to give it up. Anyway, both my parents and them played "penny" poker sometimes on a Friday or Saturday night, went out to eat, and Dad and the husband were always kidding one another, from Dad Calling him a "tight wad", to him calling Dad silly stuff also. They would every once in a while get pissed and they may not talk to one another for a day or so, and then right back to the friendship as it always was. They had 2 boys. They were both several years older than me. And the neighbors house, like ours was very small, about the same size as Mom's & Dad's... and they raised those two boys in the tiny home. She still lives there till this day, just like my Mom... both chose to stay in the home they had always been in since marriage.
She, as a nurse, really did many, many things to help me. She was like a 2nd Mom, and sometimes it felt like my "1st Mom)! LOL... she taught me to crochet, make baby caps, and took me shopping in Dallas when she went... She was always teaching me something or doing something and would usually invite me to come. She is the very reason I so wanted to become a nurse. I "worked" as a volunteer Candy striper, she allowed me to do everything from learning to use the "autoclave" (back then it was used to kill the bacteria etc on the instruments.. there was nothing, or not much disposables back then. They washed, cleaned and then wrapped the packs of what was needed in certain surgeries etc... then put them in the autoclave to sterilize them. I even had my picture in the local paper one year holding the first "Christmas" baby in a red stocking we always made for them to go home in.

So, as you can tell our families were close, almost like being family members to one another. But, if Dad decided to go out and get a "portable gas grill", that family has to "one up" Dad, and have one put in the ground permanently and build a deck around it. If Dad painted the house, so did they. If Dad bought a new truck, you can bet they would have a new vehicle.... LOL, it got to be just funny, because they just could not stand for Dad and Mom to do something, without them feeling the need to also do the same or something similar. She had helped us out over the years when we were ill, or had a health issue, we always went over to talk to her first. But, just after Dad passed away, and just after I got back to Ennis to help Mom out, little did I know that her friend was "helping" Mom with her affairs financially, etc... but SHE bless her soul is just PUSHY as hell. She always wanted to tell everyone what to do, what to say, where to be, and if you did not do what she said, you can bet she would get pissy, and not speak for a day or so... But, as I said just after I got here back in Ennis, Mom & her had "words" over something I think... what I do know is that the woman, who had been like another Mom to me, quit speaking to me also. Even if she met me in the store, I could have ran over her, and several times I looked in her the face and said hello, but she NEVER said a word to me. Now I know my Mom sometimes can say something, & she may not mean it to sound "degrading" or in a bad way, BUT people take it that way. So, I feel my Mom might have said something or the friend did, & whatever it was it really hurt their friendship and mine, and I HAD NOTHING TO DO WITH IT! After I got here, Mom no longer needed her "friends advice" so I think that was part of it. She wanted to be able to tell Mom how to kind of "run her life"....now I am here and I am the one helping Mom out with the affairs... Well, about 2 months ago, after YEARS now of not speaking they began to speak a little... thus it is not all patched up but there is a bit of communication between them... NOW comes the FUNNY PART!!!! LOL... Last week I was at Mom's for the most part as they replaced her roof. Well, the gentleman that owned the roofing company came into tell us they were through... and then he said, your neighbor wants me to give her an estimate... MMMM, you must have known one another for a long time!!! We kind of looked at one another weird and asked him why he thought that. Well, Miss Goody-two-Shoes had commenced to telling him Mom should have had that replaced years ago, and blah, blah, blah, about how Mom should do this, & that I may not be giving her the best advice ---HAHAHA ----- We had to laugh in the first place, the ONLY reason for her having her house roofed is because she just cannot stand to be "one-upped" by Mom... and then that is just like her to mouth off about someone, and of course it had to be Mom and I! So, we told him a "condensed" story of the thing, and we all three had a great laugh over it, PLUS HE GOT THE JOB!!!!! So, whether she did need it or not.... I was happy he got the roofing job... And to read me tell the story, it is not quite as funny as "watching" it evolve after all these years... just goes to prove the old saying.. "Some things never change"... she is the same as she was when I was 10 yrs old... and I bet Dad and her Husband are in heaven still teasing one another... and her Mom & Her are, still the same... a few years older but still "friendly rivals"
about how Mom should do this, & that I may not be giving her the best advice  ----LOL

Friday, July 11, 2014

Spinal Cord injury, Lupus, Sjogren's, RA - ?? Happy 4th (Belated) Hope All is Safe - And What in the World is Happening to our World?

I started off with the title of this such as it is, because This post will be a conglomeration of ideas, of things going on... of how tough like can be... how things can change within the blink of an eye... and no matter where you turn er either have some "natural" disaster, man made disaster, or for the most part , if it is not one thing happening, it is another.
As far as Jim and how he is with the spinal cord injury... which I am just now honestly beginning to truly understand how long something like this can take to even show symptoms.... it can be months and months before the "cord" itself comes out of " spinal cord shock", plus healing all of the bruising, swelling and surgery.
Then I find out about this ( definition ) "Spasticity"(Spasticity is a feature of altered skeletal muscle performance in muscle tone involving hypertonia; it is also referred to as an unusual "tightness", stiffness, or "pull" of muscles. The word spasm comes from the Greek word σπασμός (spasmos), meaning "drawing, pulling." Clinically, spasticity is defined as velocity-dependent resistance to stretch, where a lack of inhibition results in excessive contraction of the muscles, ultimately leading to hyperflexia, an exaggerated deep tendon reflex on stimulation with a reflex hammer (or spontaneous firing of deep tendon reflexes as in clonus.) and how even though he was in the hospital 3 months, went through ICU, Acute Care, and to Rehab; then another Rehab... and out of the "hospitals" and into "outpatient therapy". Let me say that Baylor of Dallas is one "HUGE monstrosity" of a Hospital. And that is not including all of their other specialty's from the Cancer Hospital to the Dental College. We we blessed (if you want to call this horrid wreck blessed) that it happened so close to Baylor Hospital they immediately took him there. ALL of our hospitals have their own specialty's but Baylor is just a "golden" egg for Rehab and accidents with lots of brain injury, or spinal cord and nerves.. they have some of the best there.
I knew I would write about the entire happenings (since there were more than on thing that happened at the same time) that could have made the entire nightmare much worse than it is. Some people may look at Jim, on his cane, with his legs quite "wobbly" at time, his neck sometimes bent over, or his shoulders tend to want to roll forward, and they "wonder" if he had a stroke etc. I usually come right out and tell what (Tiffany) calls the "Elevator" story.. He was headed o I-45 to the DFW Airport. As he came upon the outskirts of Dallas and on I-45 where his has several 'In's and Out's... changing lanes and so forth... for NO APPARENT reason we have yet to see or know, he was HIT from BEHIND (now he was driving 60 MPR which is the speed limit through there) an 18 Wheel Tractor Trailer Rig , full speed rammed him from the back, enough we "think" that then it shoved our car under a "Tahoe" which was in the next lane to Jim's right. Then it seems our car slowed after all of that, but continued to "spin" over into another land and it appears he was slammed again by the tracker trailer --- he was "hit" at least Twice, and at a very fast speed to have done the absolutely horrible damage to what now does not even appear to be a car. Jim, does NOT REMEMBER ANY of this. All he remembers he was head North on "I-45 to go to DFW Airport for a plane to Washington DC, WHERE I WAS at the time this all took place. The ONLY thing he said was 2 "people" tried to get him out of the car & could not, so the firemen came to "cut him" out of the car. Well I think he of course already had "MASSIVE physical damage to his body" as well as a concussion, and the "men" were probably the firemen and the ambulance drivers there. From what I & he knows he was unconscious almost the entire time. I know he did "HEAR" something that terrified him though. We were in the Taco Bell parking lot a couple of weeks ago, and I accidentally cut the corner a little to quickly so it kind of made a scraping sound as a "wreck" might and he almost fainted it scared him so badly. So, I am GLAD honestly he does not "remember" the wreck. I think he would have many more issues mentally and emotionally had he been awake.
I was called from Baylor by a trauma unit doctor, while I was in Washington DC..and what made that so bad, is that his Mom had just walked up & thought I was crying "happy" tears that I was getting to meet her, see DC...and all of that. So, a gentleman who helped me through this entire ordeal took over the phone & got the injury reports, if Jim was able to talk, was he able to recognize, and his injuries were etc. I had to tell Jim's Mom whom I had NEVER met, but talked to over the phone for about 10 years that her son was in ICU due to a very bad auto accident. At that moment I just crumpled to the floor in the lobby the of Hilton DC. I could not think, talk, answer, I had just had news that was so totally unbelievable & that I had no clue how to get home (I was supposed to fly home with Jim on Sunday after we had visited The Capitol, DC, His Mom and had a mini vacation. There was a guy who was just monstrosity with everything that had to do with RA,Osteoarthritis, Juvenile Arthritis, and so forth. He spends ALL of his time when he is not working at Summits, meetings, and putting his efforts into helping especially the kids that like his daughter, was diagnosed with JRA at the age of 9 MONTHS OLD! His name is Chris, and was right there trying to do everything to help me that he could. He went to the head sponsor over the Summits, and Laura who is with the Arthritis Foundation and she had a ticket for me to fly out within an hour or two back to Dallas, so I could go be with Jim. At the time we did not know if he was even stable enough to make it. So, even though I was so about leaving his Mom there alone to deal with it all, I knew I had to get back home and to Baylor quickly. My son, Jason who at the time was in Houst working, got the word and he headed up I-45 to come to the airport and pick me up. He ran into some bad weather, yet he got there about 45 minutes after my plane landed. Chris stayed with me the entire time, checking on me, carried my luggage, getting me through check points with bothering me about my pain pump and so forth, thus we made it on just in time. He was a couple of rows behind me, and I was just blessed beyond words to have had him in our summit "group" and then to help with everything he could do in order that I got home. It was amazing.
As I have written to Laura on several occasions, I will never forget the kindness  the "Arthritis Foundation gave to me in my time of need, and I hope to be able to pay them back and even more in my own advocacy work, monetary when we ever get some of that, & to help in any way I can to make sure I spread the word about how important their foundation is. I have read that already on two occasions OUR SUMMIT in MARCH 26, 2014 already helped to PASS TWO of the three legislative issues that the Arthritis Foundation were there advocating for!!! That is just incredible!
So, here "WE" (I) am in the smack dab middle of my own nightmare with Sjögren's Syndrome and trying to figure out the "mini implants" (not sure why they call them "mini"..... this is certainly no "Mini experience". By the time I am through I MIGHT be able to eat Christmas Dinner 2014, if I am fortunate!



Sunday, June 29, 2014

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

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





http://www.patientsactionnetwork.com/lets-work-together-to-fix-medicare-now/

Thursday, June 26, 2014

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

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


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

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

... cont from post on FB...  

...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

Wednesday, June 25, 2014

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

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

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

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




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

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

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

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

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

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

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

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

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


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

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

Friday, June 20, 2014

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

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

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

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





http://endarthritis.org/

Sunday, June 15, 2014

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


Orencia Combo Tops in Early, Severe RA

http://www.medpagetoday.com/MeetingCoverage/EULAR/46288?xid=nl_mpt_DHE_2014-06-13&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g773630d0r&userid=773630&email=rhia@ravishingrhia.com&mu_id=5952786




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