Showing posts with label Juvenile Arthritis. Show all posts
Showing posts with label Juvenile Arthritis. Show all posts

Saturday, July 28, 2018

JULY is JUVENILE ARTHRITIS MONTH!



300,000 CHILDREN
IN AMERICA HAVE ARTHRITIS


And we need your help spreading the word.


JULY IS JUVENILE ARTHRITIS AWARENESS MONTH


That’s right, kids get arthritis. It is a common misconception that only “old” people are afflicted with arthritis. Nearly 300,000 children in America have been diagnosed with juvenile arthritis.

Saturday, May 21, 2016

CNN Stigmatizses Chronic Pain Patients in National Pain Report by Paul Gileno

FOR ALL of us that are Chronic Pain Patients, Caretakers, family members of those who suffer from so many different types of Chronic Pain, many of us daily, and without our medications, along with other ways we "fight" against this epidemic, seeing that the CDC and the government is NOT on our side is frightening and down right wrong!

Those that do not understand chronic pain, from so many different types of illnesses, have no clue what happens to our "daily quality" of life. We would not be able to function normally, from taking care of our families, children, working, doing our shopping, going out to eat on a Friday evening, or even sitting with the family at home enjoying a movie. Chronic Pain without medications and treatments put each of us in a place of "NO life"... we would be sofa or bed ridden, we would not be able to cook, clean, do our yard work, shop, take our children to school or participate in the many, many activities that people that do not know what this type of nagging, gnawing, type of horrendous pain is like.

Many of us understand "acute" pain, from a broken bone, broken rib, from surgery, from an accident, which after a few days or week or so, that pain is gone once that heals. But, those of us with Diabetic Neuropathy, severe spinal pain and sciatic nerve pain, pain from the many Autoimmune Illnesses such as RA, Lupus, Sjogren's, Autoimmune arthritic types of pain, osteoarthritis, neck pain, pain from so many different types of problems that does NOT go away, that it stays with us throughout the rest of our lives... THAT IS THE SOMETIMES INTRACTABLE pain I am speaking of.

It always floors me when someone says, "You don't look ill?" Well, I, like most, do not like to go out in public looking like "death warmed over" as the saying goes. We "try" to put on our "best face"... to try and move through the pain, so we can appear to be "normal, even though our lives, our physical, mental and emotional states are far from normal. There is cancer pain, which in all ways is chronic, when it becomes "incurable". There are problems with bladders that can cause horrid pain, and it also an autoimmune illness. Up until I was "diagnosed" formally with RA, Lupus, Sjogren's, Raynaud's, and so forth, I had Migraines, and those were enough to cause me to have to after 25 or more years fighting them, had to quit working. They were so often and so severe, that I missed way too much work due to those. Then came my joints "falling apart" before I was even 35 years old... "arthritis" and people say how can someone so "young" have that had of arthritis that "eats away" at the joints. Well, we now know that infants can have RA, Juvenile RA, and some of them as young as 9 months old! So imagine, an infant so young, and the parents realizing that this hell of a disease shall effect their child or children for the rest of their lives.

I have always said, for anyone especially those in Congress, in the CDC, and so forth, that would like to "walk a week or two" in my or many others shoes with these illnesses would be screaming out for anything to relieve the pain!

So, the article below is just one example of how we still do not have ENOUGH EDUCATION IN OUR GOVERNMENT, in our NATION and around the World about ALL of these diseases that bring on severe, chronic, daily pain!







http://nationalpainreport.com/opinion-cnn-stigmatizes-pain-patients-8830432.html

Wednesday, March 4, 2015

YOUR VOICE on Capitol Hill at the "Virtual Summit" can be heard! YOU WILL BE HEARD! E-Advocacy and more for the Arthritis Foundation

Okay Guys and Gals!!! I am asking for YOUR Participation in this EXTREMELY IMPORTANT situation. As most of you probably know I have made "Platinum Ambassador" for the Arthritis Foundation for 2014-15. So, I am headed for Washington D.C. March 22, through March 24-25th... for the Annual "Summit on the Hill" by the AF. We will be going personally to Capitol Hill to both the Senate and House of Representatives, to meet with as many of them as we can. If we don't get to meet personally with them, we still usually meet with their "health legislative" assistants, and other staff that can help to deliver our information and message. It is IMPERATIVE THOUGH that ALL OF YOU that can't be there, really and truly KNOW YOUR VOICE COUNTS!!! I know many of us have become disenchanted with "Congress" - our Senators and Representatives for many reasons. Yet, I know PERSONALLY FOR a FACT that YOUR VOICE DOES MATTER!!! I have seen the results of what letters, phone calls, messages, and meetings can do for all of us in the matter of Arthritis, whether osteoarthritis, RA, Juvenile RA, Still's Disease PLUS ALL of our other "Autoimmune" and other health issues. BUT, WE need YOU to also raise your voice and be heard. We will be DELIVERING YOUR LETTERS PERSONALLY to the Senators and Representatives that you can follow from instructions below, and fill in your personal parts, tell your story also, or however you want to personalize it. The Arthritis Foundation NEEDS "Virtual SUMMIT people" and that is YOU. Even if you are going to DC, still please use this letter to be given to your Senators, and Representatives. ONE VOICE can MOVE MOUNTAINS! I have witnessed it, and continue to truly believe we do matter. BUT, if you DON'T contact them, then they do not know your situation and how YOU feel. So, I am posting here, on my blog, on my Pinterest, on my Instagram, on Twitter, everywhere I can about how to be a part of this critical movement! This is for ALL of us, with these horrible illnesses, that need help with getting good physicians, the MEDICATIONS WE NEED and making them AFFORDABLE FOR ALL! This is about those in our nation, many of our Armed Forces Come home with arthritis problems or develop them..... and many of our youngest of this nation are also patients, with Juvenile Arthritis. I want to urge each of you to take a bit of time and send your letters. I am including all of the instructions in an attachment and at the URL that is provided. If you have questions feel free to ask me, either through Facebook, or through message or email me. If you would like me to help or if you have a message you want me to take your letters with me, and I will make sure they get delivered. 

Here is your link to sign on to be an "E-Advocate" for the Arthritis Foundation. This gives you a voice via emails and so forth so you can be heard at the National Congressional Level. It is not time consuming, you don't even have to leave the house, but this is a way to be able to speak up and be heard by your Congressional Leaders that you voted in. Let them know how you feel, and what you feel is good for yourself and the nation when it comes to Arthritis, RA, Osteoarthritis, and ALL of the other diseases that are often in tandum with arthritic illnesses. It takes a few moments to sign up and be heard for the rest of your life by those who can help to make things better in the realms of your health. 

http://www.arthritis.org/ad…/sign-up-to-be-an-e-advocate.php


Then this is how you can "attend" the Annual Summit on the Hill as a member of the "Virtual Summit"... this link provides you with a sample letter that you can also personalize, add your picture, and tell your story about your health issues when it comes to arthritis, whether a patient, caretaker, family member, or just want to be a "voice" to help others.

 http://www.arthritis.org/.../virtual-summit/letters.php

 

You can download the "letter" from that link, and all of the instructions are there so you can send it back via email to those that will be taking YOUR letters directly to Congress. WE are giving a VOICE to YOU, even if you can't attend... as I said, if you have questions, need help, or however I can assist you, feel free to email, message me, or post and I will be more than happy to help out in any way I can.

 ALSO!!! SOCIAL MEDIA is a HUGE way to get your messages across. MANY of our Congressional Members have Facebook pages, Twitter, Instagrams, and so forth. That is another way you can also make contact with them, so be sure to also look that up. I have both of my Senators and my Representatives Facebook pages, and I've sent Tweets to them and emails also from their websites. Sign up for their newsletters. That is a great way to find out how to contact them also.

 

Here you go!!! "Proof" is in the "pudding"!!! this study is compelling to show that a few "Tweets" or other type of Social Media use can capture your Leaders Attention on a Subject ...

  http://connectivity.cqrollcall.com/just-a-handful-of.../  




Sunday, September 28, 2014

Talk About News to Make You Shout! You must read this and be sure to go to all of the links!!!!


I was so blown over by this announcement from the Lupus Research Foundation I had to rub my eyes, blink and look again to make sure I saw what I saw Correctly!!! This is such phenomenal news I was just taken aback.

And further not only do we owe the NIH hats off to this incredible research opportunity, but everyone below along with all of the researchers individually, those folks that are on board for activism, Ambassadorship, Volunteers... everyone who tries their very best to stand up and say that what we have now as far as help for these illnesses are simply NOT acceptable, as the Arthritis Foundation puts it. Hats off to all that have been and will go back to the "Hill" in D.C. to open up and tell their stories, or the stories of those loved ones hit by the horrific illnesses. People like myself that try their best to live a "normal" life when there is never any sense of "normal" when you have a chronic illness/pain and especially when it comes to an autoimmune type of illness. I am so thrilled to put this on my blog and share it with my readers!!!! Be sure you go to ALL of the links and see what is being said about this incredible Undertaking... the FIRST EVER of ITS KIND to do something to stomp Lupus and RA, along with many other AI Illnesses into the ground.... Again I am just totally almost speechless.

AMP Rheumatoid Arthritis and Lupus:

The partners

http://www.arthritis.org/
Government

  • NIH
Industry

  • AbbVie
  • Bristol-Myers Squibb
  • Merck
  • Pfizer
  • Sanofi
  • Takeda
Non-Profit Organizations

  • Arthritis Foundation
  • Foundation for the NIH
  • Lupus Foundation of America
  • Lupus Research Institute/Alliance for Lupus Research
  • Rheumatology Research Foundation


http://www.niams.nih.gov/News_and_Events/Press_Releases/2014/9_24.asp

 

 

 

http://www.rheumatology.org/ 

 

 

I will be posting more about this tomorrow and also more "Kudo's" to everyone participating om this historic event for RA and Lupus!!!

Tuesday, September 9, 2014

Arthritis Foundatiion Jingle Bell Run in TX and Many Surrounding Communities In December!!!

The one closest to me is in Ft. Worth! I would love to see one of the girls I made friends with in DC while I was there in March!!!! Here is the URL and all of the information.... Please come and join or give your donations....:)

Ft. Worth's appears to be on December 6th


http://fortworthjinglebellrun.kintera.org/faf/home/default.asp?ievent=1112128







 

http://www.arthritis.org/programs-events/jingle-bell-run/




Thursday, September 4, 2014

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!!!


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/

Monday, January 13, 2014

IFAA is Pleased to Announce A 2nd "Blog Leader" Danielle Tipton in an Online "Chat"!!



 International Foundation of Autoimmune Arthritis Diseases represents YOU, I, and EVERYONE that are plagued with these horrid, still a great deal misunderstood. 


I am so pleased to "introduce one of our next "Blog Leaders", Danielle Tipton! Being the Mother of two children that suffer from Juvenile Arthritis! As she blogs about Zachary and Emily, you shall get a small glimpse of how difficult it must be to have ONE child with this disease!!! I just cannot fathom how she does it all with two chronic ill kids. Her fight is an extremely personal one, I would say. So, please join as she tells her "caretaker" and Mom's story, on January 14th, 2014 at 8:30 pm (ET).




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