"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
Showing posts with label Pediatric Rheumatologists. Show all posts
Showing posts with label Pediatric Rheumatologists. Show all posts
Monday, August 4, 2014
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/
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/
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....
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/
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