Showing posts with label Congress. Show all posts
Showing posts with label Congress. Show all posts

Thursday, November 16, 2017

Saturday, July 29, 2017

AS I post this, and see how many concerned people come to my blog over the Healthcare Crisis I spoke about... I continue with things I usually don't discuss - Our Political "Future" and the Effects on All, Especially the Chronically Ill



As I watched the Night New last night, and once again, the "fight" over Health Care, continues to cause many, many of us terrible stress. Either we are ill, or have children or other family members ill, or cannot afford the outrageous and constantly rising costs of healthcare and health insurance.

Believe me, after the hip fractures last December, then the cervical neck surgery this past April and the RIDICULOUS CHARGES FROM MY DOCTORS, FOR A CERVICAL BONE STIM DEVICE, TO the the rest of the charges from an ambulance, to the radiologists, the anesthesialogists, to medications, and more, it is like that governments just soon us to "die" rather than "burden" the nation with our chronic health problems.

But, look at "John McCain"... you can bet the government is making sure he has the very, very best care, and all of what he needs to hopefully survive the tumor they found. Which of course I hope so also. I "no matter what "party" I lean towards" would not want anyone in our governments bodies to be ill and pass away.

But, those Congress men and women, and all of our governmental people get the best care the rest of their lives. Even after they are no longer involved and "retire" they still are well taken care of, with pensions, healthcare and benefits.

Which I am not putting down, BUT WHAT ABOUT ALL OF US THAT ARE HERE SUPPORTING THEM? Their own constituents that are the ones that "vote" them in? I am sorry but our President is just not the right person for the job. Not when it comes to many things, he just does not know or understand how to handle. And this constant "tweeting" of major information I feel is somewhat ridiculous. Not ALL that goes on, due to many reasons, needs to be "tweeted" over the world!!!!!

Here is my post from Facebook, as to what I went through last week with doctors and now more health issues that I am fighting with...

I'm totally exhausted! Yesterday having 2 doctors appts in Dallas, that were scheduled one for early morning and the other mid afternoon in two totally different locations, about got to me this morning. But, my son and I did have a great time together. I was glad he went. We got to talk about lots of things, as well as he got to see my Rheumatologist and my Pain Dr. whom he had not met either. I wanted him to witness himself what fantastic doctors I have, and he immediately saw that my Rheumatologist was truly a "God-send" as well as my Pain Doctor also.

But, now my Rheumatologist wants me to see another "specialist" which I did not even know existed, which is a Metabolic Mineral and Bone Specialist, mainly due to the Osteoporosis, in which he was extremely concerned due to those that have "fractures of the hip" especially due to osteoporosis, have a 20% HIGHER mortality rate than those without one and without osteoporosis, plus just having the RA and Lupus, already leads me into a higher possibility of not "living as long" as others without it. This doctor also may have other options to "treat" the osteoporosis, and may provide answers about why I'm having the "chilled totally drenching night sweats, since this could be related to an "insulin" problem with my metabolic systems, which can be a "parathyroid" which is NOT related to regular "Thyroid conditions" and other issues that may lead us to find out more about chronic health illnesses, that maybe what I could be having and don't know it. So, I have to have another bone density scan next week on Tuesday, then schedule an appt with the specialist at at SW Med Center in Dallas.

I have to have the scan and results to take with me, so I am waiting before I schedule the appt. Hopefully it will be soon, so we can find out what could be going on, which as he also said, I am a very "complicated" patient, which ALL of my doctors say, so we shall see. Then I had my pain ump refilled, and I guess i should have "insisted" he up my meds. I am in so much pain again today, I am about in tears.

 Also he thinks my finger problems, are eczema, so he called in some oinment for those increased my Sulfasalazine, by 500 mg more twice daily, and if we don't see results in 2 months then we probably will move on to Acterma for the RA... the Enbrel may not be dong it's job, if by 2 more months I am not much better. So, again a med change... probably.... anyway, lots going on, and I hurt like hell... but I've got to get out briefly for a couple of things, then I hope to have myself on the sofa. We have yet another horribly hot day with "heat warnings, again... for about the 5th day.... I will probably not post much more today, just wanted to let you know a bit about my appts yesterday...

Wednesday, June 21, 2017

AMA needs YOUR Assistance for Congress and the Health Care Bill TIME is ASAP!!!

URGENT!!!!!



Last month the House of Representatives narrowly passed the American Health Care Act (AHCA), legislation that according the non-partisan Congressional Budget Office (CBO) could result in an estimated 14 million Americans losing their health care coverage in 2018 in addition to a projected cut of more than $800 billion to Medicaid over the next decade.

Now it's the Senate's turn and prospects for an improved bill that addresses the concerns expressed by physicians from across the country look grim. As early as next week, Senate leadership is moving forward with plans to vote on a bill that has not yet been made public nor scored by the CBO.

Physicians stand united with their patients in opposition to any legislation that would cut coverage for Americans with health insurance, take quality health care coverage away from those who have it now and increases out-of-pocket health care costs.

Contact your Senators now and tell them to vote NO on any legislation that would make coverage more expensive for millions of Americans.  It's time to put patients above politics!



https://www.votervoice.net/Shares/BAAAAAoYACnXMAUIN3Q7FAA



Thursday, October 13, 2016

News From National Pain Report and Dealing with the Congress, CDC, and Government and Chronic Pain, Medications and much more!!!!



Chronic Pain Patient Rally Set for Washington D.C.

by Ed Coghlan


PLEASE GIVE THIS A READ! IT WAS in my newspaper a couple of days ago, and I wanted to post it here, separately because I know MANY of you are TERRIFIED of what us, as Pain Patients, Chronically Ill, and Already been through the mill, many times shall do, if things change drastically in regard to our medications.... So, I felt this needed to "stand out"... boy I need to again, since it has been awhile post my battle since the age of 17 years old with chronic pain, that started with severe migraines, and never stopped, going into all different types of chronic illnesses, that cause horrid pain....

The YEARS I SPENT just "trying" to find a doctor, a legitimate pain physician to treat me.... and it was only about 10 years ago, I FINALLY FOUND HIM IN DALLAS TX! The man is a true "hero" in my book for sure....



http://nationalpainreport.com/chronic-pain-patient-rally-set-for-washington-d-c-8831671.html



Monday, August 8, 2016

A Petition to sign for Chronic Pain and such, along with information on Your Congressional Members and Town Hall Meetings!

https://petitions.whitehouse.gov/petition/direct-dhhs-fund-and-implement-national-pain-strategy-reduce-public-health-burden-chronic-pain-0


Above is a link to Congress a Petition to sign about Chronic Pain and its effects on our soldiers and Armed Force and everyone else....

Also anyone who attends town Hall Meetings in your area, congress is out for the next month and most are doing them. So, be sure to find your s and see the schedule. Here where I am mine is Joe Barton, so here is his schedule for those around in the counties he serves.... 6th District in TX.....


https://joebarton.house.gov/press-releasescolumns/rep-barton-releases-town-hall-schedule/


Town Hall Meetings with Representative Joe Barton, while Congress is out for this month... be sure to check on yours if you want to go and give your reasons for anything... from chronic pain and such, to the focus on how horrid our governmental situation is now...


I KNOW SPEAKING UP WORKS!!! It has helped myself as well as many others, so SPEAKING OUT TO YOUR ELECTED OFFICIALS IS IMPORTANT!!!



Thursday, April 14, 2016

MORE CRAZINESS INVOLVING the CDC and them NOT WANTING DOCTORS TO ASK A PATIENT ABOUT THEIR PAIN LEVELS AS FAR AS A 5TH VITAL SIGN!!!! JUST PURE INSANITY!


Please read and sign the petition below to President Obama and how you feel about this Opioid bull!!!!


http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336?xid=nl_mpt_DHE_2016-04-14&eun=g773630d0r



This is titiled "TO STOP DOCTORS FORM ASKING ABOUT"A FIFTH ISSUE WHEN YOU GO TO YOUR PHYSICIAN, AND THAT IS ASKING ABOUT YOUR PAIN, AND PAIN LEVEL!"

http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336

Talk about another load of CRAP!!!! If a patient comes in with anything that a physician KNOWS causes pain, why would they NOT ask the patient what their pain level was, had been and what is "tolerable?" I am SO SICK of the CC, the government, Congress and all of these "opioid fearful people causing havoc for us Chronic Pain patients who like myself when I go to my Rheumatologist Friday, HE SHOULD want To KNOW my PAIN, then, the past few months and what is TOLERABLE? How do we or HE know if my MEDICATIONS ARE WORKING? If he does NOT ask the Questions about pain, the inflammation, and so forth he would NOT know... this is simply ridiculous!

This is purely incidious! How can a doctor NOT ask a patient who comes to see them especially with any illness, whether chronic or acute what their "level of pain is" as a "vital sign"? In the first place, if you leg is broken, or you are having heart problems such as a heart attack that in itself can cause PAIN!

 

Then take Pain Doctors who see chronically ill pain patients, or like above my Rheumatologist who bases a portion of their "diagnosis" updates on how a patient's pain level is, whether worse, better, the same, and so forth... I swear with each day, and each article I want to fly to Georgia and tell the CDC, along with being in Congress, my story, then ask them, HOW LONG THEY WOULD GO WITHOUT ANY PAIN MEDICATIONS IF THEIR SITUATION WAS LIKE MYSELF AND MANY OTHERS? If they have a loved one that is in severe pain from a spinal injury, or chronic severe disease, or has Lupus, RA, and even osteoarthritis, as my Mom can testify lately, causes her SO MUCH PAIN, without a pain pill, SHE LITERALLY CANNOT GET OUT OF BED AT ALL, PERIOD! I felt she may "pass away" on Monday, because I got there and she was in so much pain, AND APPEARED TO BE SO ILL, I FELT SHE WOULD NOT MAKE IT ANOTHER DAY!

I GAVE HER, her pain medication properly, her other medications for her blood pressure and so forth, and made sure she had some beside her with direction on when to take them, and by TUESDAY, she was UP AND OUT OF THE BED! Yesterday, she was up and able to do a "few things" rather than be CONFINED TO A BED! So, I want the CDC TO EXPLAIN WHY I WOULD ALLOW MY MOM TO SUFFER NEEDLESSLY TO THE POINT SHE WAS CONFINED TO HER BED, WHICH WOULD ONLY CAUSE MORE HEALTH PROBLEMS, AND POSSIBLY SEND HER TO THE HOSPITAL, RATHER THAN MAKE SURE SHE TAKES HER PROPER PAIN MEDICATION????? I am SICK TO MY STOMACH, AT THIS CRAP OVER ABUSERS, AND USERS... WHO FOR THE MOST PART BY THE MEDICATIONS VIA THE BLACK MARKET, OR FROM OVERSEAS, AND NOT FROM A REPUTABLE PHYSICIAN! 

THOSE THAT SELL HEROIN, ALSO HAVE THEIR HANDS ON EVERY TYPE OF MEDICATIONS, WHETHER THEY BE OPIOIDS, AND DOWN THE LINE... AND THEY CERTAINLY ARE NOT GETTING THEM FROM A REAL PHYSICIAN... THEY ARE GETTING THEM THROUGH SOURCES AND SELLING THEM ILLEGALLY TO THOSE WHO CHOOSE TO ABUSE!!!!!! 

I want to SCREAM OUT to these fools that THE MAJORITY OF US ARE NOT ABUSERS! We are people that NEED TO BE OUT OF THE BED AND LIVING OUR LIVES LIKE MY MOM! AND, our medications do NOT REMOVE ALL OF THE PAIN... but MAKE IT TOLERABLE ENOUGH TO GO ON for the most part. I STILL LIKE THIS WEEK, HAVE MY DAYS THAT THE WEATHER, WHAT I HAVE TO DO THAT WEEK, from TAKING OUT THE TRASH TO THE CURB, TO SOMETIMES JUST HAVING TO RUN TOO MANY PLACES FOR ERRANDS FOR MY MOM AND I... AND IT WILL PUT ME DOWN FOR A DAY OR TWO, OR THREE... BUT I CAN TELL YOU I would be DEAD, and in ASHES, if I HAD TO LIVE EVERYDAY IN THE SEVERITY OF PAIN with NO medications! There is NO WAY MY BODY could WITHSTAND THAT SERIOUS AMOUNT OF INTRACTABLE PAIN!!! Pain EFFECTS YOUR HEART, AND OTHER REALMS OF THE BODY, and my BODY WOULD GIVE WAY, AND I PROBABLY WOULD HAVE A 3RD HEART ATTACK IF I HAD TO LIVE IN SEVERE CHRONIC PAIN EVERY DAY!!!! SO PEOPLE GET A GRIP AND LEARN THE TRUE FACTS OF THE STORY... WE KEEP HEARING "ONE SIDE" AND NOT THE OTHER......

 

 

 

 

 

 

Thursday, March 31, 2016

What A NIGHTMARE FOR CHRONIC PAIN PATIENTS, FAMILIES, CARETAKERS... THE CDC, TRYING TO GET CONGRESS INVOLVED & Just how Insane all of this is!



HAVE ANY of YOU that are in CHRONIC PAIN or are interested in CHRONIC PAIN ISSUES due to being a caretaker, or having a loved one that deals with CHRONIC PAIN SEEN THIS????!!! Talk about ONE GARBLED BUNCH OF bureaucratic RED TAPE GIBBERISH, THAT BY THE WAY THE CDC IF YOU DO NOT ALREADY KNOW IS getting CONGRESS in on all of this, and CONGRESS could PASS LAWS OR BILLS that MAY INHIBIT OUR PHYSICIANS and how they treat PATIENTS!!!! The GOVERNMENT SHOULD HAVE NO SAY in how our physicians treat patients with ANYTHING!!!

I was just blown away by this... I have read all of the other things going on but when I FOUND THIS, it made me so upset and so mad, I am definitely going to write to my Congressmen and Women and let them know exactly how I feel about this. I am watching MY OWN Pain Doctor who has been seeing me for almost 9 T+YEARS and has NEVER hesitated to do what was necessary to keep my chronic pain level as low as we could so I could function in a daily world, take care of my home, my MOM, and have some "quality of life". Yet NOW I have noticed SUDDENLY he seems HESITANT or like he is upping my "pain pump" meds very slowly after me having the pump since 2010!!! He replaced it on Dec 29th, 2015 after it had a motor stall, and he has yet to get my medication level back up to where it was.



NOW, I WILL SAY my pain seems to be a "bit better" since I have been on the Minocycline for the RA/Lupus. It has been about 3 or 4 months and since we are doing the pump meds slower in upping the doses, I have noticed it could be I may not need to have the pump set as high as it had been which is awesome! BUT, I also am concerned deeply about his "manner" about it all now. Suddenly, since this CDC mess started even he seems like he is being even more overly cautious about the medications and how much I need.

Now, he is very willing to up it more even next week, if I am still not at a comfortable enough level, so I can say he is not giving me any issues such as that, but it is just what he says, or more "what he is NOT saying" that really has me concerned. So, I wanted to post this, and I will put it up on my blog, and my other Facebook pages, and I am going to try and have this as an article on my newspaper (which by the way, will be "linked in" with my blog soon)... but I just almost fell out of my chair when I began to try and wade through this ridiculous mess, and see what the CDC is doing... and they are "lumping" people together... for instance, if someone had been on a prescription pain medication THEN went to something such as heroin, rather than say that MANY of them get those "prescriptions medications" off the streets NOT FROM DOCTORS!


So, it makes it sound like MANY more get scripts and then go to heroin from their physicians and that is just wrong! If they got down to the line of whom gets "illegal prescriptions off the streets" then decides to go to heroin, due to it being cheaper etc... those people should NOT be COUNTED into those who go to illegal drugs after taking prescriptions from doctors. So, their "numbers" are "skewed" as to those types of facts. So, just coming up and saying "so many thousands" go to illegal drugs after opioids that are "legal" is not correct.

And are they taking into consideration the number of those who are in "chronic severe unrelenting pain" who cannot get help from doctors, that decide to commit suicide? I have had over the years several people ask me directly, How do you live and try and have a life with that much chronic daily pain? Then They add" I believe" I may just jump off a bridge, or kill myself before I could live my life like that!?" ALL of us NEED to write our Congressional Leaders, get our physicians involved, get our family members, friends, those who have chronic pain, and know they would not have a life or a quality of life without the proper medications.

I DO NOT believe in "quacks" that just hand out medications of any type just to get people into their offices for money! Those that do that to rip off Medicare, Medicaid, Insurance Companies and "their patients" should be removed from being a physician. I also do not believe that some "so-called" pain management clinics are "truly" what they say they are. When I walk in to a physicians office, that is "supposed" to be a Pain Clinic, and everywhere you see a sign stating "We do not prescribe pain medications" to me that is a red flag warning that something is wrong!


Then DO NOT call your "clinic" a "pain management clinic" if you are not offering ALL TYPES of pain management, whether it be, alternative things, therapy, acupuncture, and other types of pain management items, injections and so forth... but that should be NOT considered "pain management".


There definitely needs to be a "different name" for those who ONLY OFFER "alternative" ways of pain control. It is misleading to patients, and unfair to us that think we are going to someone who can help us with pain, whether medications of any kind are involved or not, if the first thing you see is that you do NOT prescribe pain medications. It could be that "opioids" may not be needed, and there are certainly other types of medications, such as muscle relaxers, meds for certain types of nerve pain, NSAIDS for those who can take them, Migraine medications etc... so the "host" of pain control medications are NOT ALL "narcotics"..... This is a HUGE PROBLEM that needs to be resolved. And I know there are people who "abuse" the system. They are NOT legitimate patients and they get medications for other reasons other than for real chronic pain. BUT, the THOUSANDS OF US who are TRUE PAIN PATIENTS should NOT BE PUNISHED due to those who "choose to abuse"...


Rhia - PLEASE Do your own research and take time to write, call, email your Congressional people, the CDC, and spread the word through your own Social Media Networks!

Here is the link to this bunch of garbled mess from the CDC!


http://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm



These photo's of my legs, and the abscesses are just more of a small "portion" of suffering from the pain, and all of the other complications from Lupus, RA, Sjogren's and so forth... We "NEVER FOUND OUT" exactly why all of these appeared on me... but it took over 2 YEARS for it to all clear up.... They just told me after I went through every test and specialist that it was the Lupus... and then the cellulitis below that turned into abscesses on both of the tops of my thighs tool=k over 6 MONTHS to finally "heal" and now I have two huge terrible looking scars from them... and talk about pain... I had to go for 8 weeks once a week to a "Wound Care Specialist" in Dallas, that debrided those every week, in other words "cut out all of the dead materials and put special material in them that was a "collagen" to help "fill in" and heal those very deep wounds... at first they were about 3 inches deep and at least 2 to 3 inches wide...




Below are the wounds from the cellulitis that both turned into abscesses.... and in between me seeing them, I had to clean these myself, pull the packing out and redress them daily... I was on 2 different antibiotics for 6 months at least... and the still look horrible... I love spring and summer, but I dread having to have people "see" what they look like now.... 








Saturday, March 12, 2016

YOU TOO Can be a Virtual Advocate during the AF Summit on the Hill 2016!!!! YOU ARE IMPORTANT!!!!!

Arthritis Foundation Summit Begins Monday in DC! YOU TOO can be a "Virtual Advocate"!!!!




http://www.arthritis.org/about-us/news-and-updates/arthritis-foundations-advocacy-summit-fights-for-awareness-and-cure.php


Advocate 101: Join the Movement


What is an Advocate?

Advocates help improve the lives of people living with arthritis. The key to success in changing government policies and funding is through grassroots advocacy and our advocates are the Arthritis Foundation's chief resource for making positive changes in Washington. Click here to join the movement!

What does an Advocate do?

Advocates make their opinions and personal stories known. By signing up, you'll receive Action Alerts in your inbox when important arthritis-related issues are debated on Capitol Hill.   In 5 minutes or less, you'll be able to write your elected officials and tell them their constituents care about arthritis and how it impacts our communities....(see the URL for more information...   




Sponors for the 2016 AF Summit!

Wednesday, March 2, 2016

YOU CAN Make a DIFFERENCE WTH THE ARTHRITIS FOUNDATION ON CAPITOL HILL FROM YOUR HOME!

I share this with you! Since I will not be able to attend the AF Summit on Capitol Hill due to having cervical neck surgery, I am definitely going to be an "advocate" online! This link takes YOU to a letter, that you can personalize So, even if you can't make it to the Summit, you can and tell your own story about how AF is effecting you, your family and so forth. I sent mine in yesterday! ALL of these will be taken to Capitol Hill and given to Congress at the Summit! YOUR can MAKE a DIFFERENCE even from your home for the AF Summit on Capitol Hill!

HONESTLY, I FEEL BADLY THAT I AM NOT ABLE TO BE THERE THIS YEAR AND REALLY WANTED TO ATTEND! I LOVED IT IN 2014, AND HAD HOPED THIS YEAR THINGS WOULD ALLOW ME TO GO. MY NECK SURGERY IS ONLY A PORTION AND COULD HAVE WAITED, BUT I ALSO HAVE A MOM, WHOM I FEAR COULD BE SUFFERING FROM SOME TYPE OF DEMENTIA, OR WORSE ALZHEIMER'S. THINGS ARE NOT GOOD AT THIS POINT, AND I FELT SINCE I AM HER "ONLY CARETAKER", I COULD NOT LEAVE HER THIS TIME. SO, I MADE THE CHOICE TO TRY AND DO EVERYTHING I CAN TO "MAKE A DIFFERENCE" ONLINE, THROUGH SOCIAL MEDIA, TO SENDING LETTERS TO MY REPRESENTATIVE BARTON AND TO CONGRESS, AND LETTING THEM KNOW MY STORY! 

YOU TOO, WILL MAKE THAT DIFFERENCE. YOUR LETTERS ARE ALMOST AS GOOD AS BEING THERE ON CAPITOL HILL!!!! 


 

Thursday, May 14, 2015

Please send an email, snail mail, or post to their Social Media Sites about the Arthritis Caucus and how we need their support!!!

Dear Senators, Cruz, Cornyn and Congressman Barton...


I post this because Vets are also extremely critical patients in the Arthritis realm. They all too often come back with all types of arthritic problems after their tours are over. The DOD helps to do research on these issues and I wanted to also let you know this is critical to thousands and thousands of your constituents yearly. So many hours of time are lost on jobs due to these horrendous illnesses, along with people not able to support and care for their families. Medications are much too expensive and without those most of us are unable to have any type of "normal" life. I urge you to help and join and/or sponsor the Arthritis Caucus. WE need your help and support!   I would , be happy to send more information about how the devastating illnesses effect Texans along with the rest of the nation. May is National Arthritis Awareness Month! 1 in every 5 adults, 300,000 children & countless families are affected by arthritis. It accounts of $156 billion annually in lost wages and medical expenses. 

I also sent a tweet about these issues.

This is Arthritis Awareness Month! We need YOU to also ask for support from your own Congressional Leaders.

You can now tweet them, email them, snail mail them, and post to their Facebook pages. Most all of them now are also on Social Media, so that makes it much more simple to get your voice HEARD!!!

So this for ALL that suffer everyday from these horrendous diseases, that absolutely destroy our qualify of life... they have mine and I know MANY others that also feel their life is almost nothing due to these illnesses.... 

You can go to the arthritis.org site or here are some "sample" twitter posts:


THESE ARE ALL SAMPLES OF TWITTER POSTS AND/OR FACEBOOK POSTS BELOW, PLEASE ADD YOUR STORY ALSO AND PERSONALIZE THEM....

  • ~300,000 babies, kids & teens have #arthritis or a rheumatic condition? http://blog.arthritis.org/news/arthritis-awareness-month/ #ArthritisAwarenessMonth

  • .@insertrepnamehere in honor of #ArthritisAwarenessMonth, please support the #arthritis community by joining the Arthritis Caucus! 


    or you can go to their Facebook pages:


    • May is National Arthritis Awareness Month! 1 in every 5 adults, 300,000 children & countless families are affected by arthritis. It accounts of $156 billion annually in lost wages and medical expenses. http://blog.arthritis.org/news/arthritis-awareness-month/ 

      TO LEARN MORE GO TO:

      http://blog.arthritis.org/news/arthritis-awareness-month/

    • THERE ARE ALL KINDS OF WAYS YOU CAN HELP, BY BLOGGING, TO ALL TYPES OF SOCIAL MEDIA AND USING IT TO SPREAD THE WORD!

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, February 22, 2015

Medicare Reform - NOT for Just the "Elderly"!

I join in this for several reasons. One of which is that even though many of us at the time when we are much younger in life, never think about needing your Medicare and Social Security benefits. You are working, raising a family, and everyone seems "healthy"... so needing something such as Medicare does not even probably come up unless you are talking with your parents, the elderly people, on TV or in the news. BUT, I can also attest, you NEVER KNOW WHEN YOU will be the one that needs Medicare... and not at 67 or so but at 35, 40, 45, 50 get my drift??? Life can turn on a dime, and all of a sudden you are saddled with a chronic illness that no longer allows you to work. So, where do you go? Eventually you may lose out on your insurance as far as health wise, and possibly not be able to even make a living, much less pay for high medications, doctors, tests, hospital stays... and you are in a place of living hell!!! It can happen and IT DOES HAPPEN!! I am walking (sometimes crawling, Living PROOF) that life is not always what it "should be".. or what you thought it would be... withing a breath's space, things can change... and when you are needing Medicare the very MOST in order to just have the vital doctors and medications to sustain you... and medications run 1,000.00, 2,000.00... or you have MANY 20 or more medications some of which are 300.00 or more a MONTH!!! There is NO WAY most anyone can afford to pay out of pocket... so we need change.... change for the ones growing up and working now... in order that when they retire, Medicare and Social Security is still there for them. OR in a month, or year, or a few years down the road when all hell breaks loose, and you find yourself too ill to work, too broke to afford health insurance, and you need "those Medicare benefits"... that is when it will dawn on you... Gosh I wished I would have stood up for CHANGE!!!!!

These three posts are what I sent in Facebook and in Twitter to my House of Representative Member and my Two Senators.... it is time to take up the lead and make change for the good of all when it comes to Medicare!

WE must stand up and let our Congress officials know how we feel when it comes to our health concerns, and how Medicare needs to be fully reformed, and will be here for many many years and people to come. We deserve great care, and our physicians and medical people that DO A GREAT JOB should be taken care of. Those physicians and other medical "professionals" who are not willing to be there to truly HELP patients don't deserve extra benefits or compensation. We have a GREAT DEAL many AWESOME DOCTORS WHO GO ABOVE AND BEYOND THEIR JOBS FOR THE PATIENTS!






Sunday, January 4, 2015

How "Autoimmune and/or other Chronic Illnesses" seem to "slow you down to a snail's pace"

Lots going on here, there and yonder...mmm one of those "Texas" words "yonder"??? I have people especially ones in California ask me where "yonder" is??? Well, in TX, it usually means in the direction you are pointing! LOL!!! New word for today....  "lollop"... to "loll" around for short... or to be a bit in a lounging position and it can also mean to "bob" up and down.... I had heard this one and have used it so not really "new" to me, but it puts it in my head to use it more... I am in the process of finishing paying bills, cutting out coupons, and trying to NOT feel BAD!!! I woke up about 4 am with the worst headache, and my stomach was upset.... plus I just have no energy for some reason... and of all days... even though it is sunny outside, the wind chill has to be COLD as heck! Oh, another word I had tried my best to think of last night, and I could recall several words that kind of meant the "same" as what I was trying to come up with. Finally I got the Thesaurus out and looked up "neutered", "watered down" and so forth. Then the word I was looking for hit me... CENSORED... I think something due to me NOT censoring my writing there are times some may get offended by what I say. Now, don't get me wrong, I am not going to poignantly come out and write something meaning to piss someone off or upset them on purpose. But, if I begin censoring my writing, it is no longer what I want to say. It has made me wonder why I don't get as much traffic to my blog as I want. I realize that "links" back to other sites help immensely, to get your rankings up as far as SEO goes for sites and search engines. But, it is not even "strangers" that maybe "googling" a certain type of blog, or illness, and then they come across a link to my blog or facebook page etc. It is more about wanting ALL of those that spend time here at Facebook, Google Plus, and other places they may find out about me being a writer and published author that I am interested in. I seem to never get feedback. No matter if I write about my own health issues, about the other places I am a strong voice as far as advocacy, activist, and ambassador on, or if I am talking about my own latest catastrophic event of the day, I never get many replies back, or more comment is what I mean on the blog in itself. Does that mean people don't like it so father than say something tacky to me, they just don't say anything at all. Or is it I do hit the nail on the head for many, yet they just don't find it necessary to submit a comment on whatever subject matter I may pick for the moment. Well, unless something ridiculous happens this year of 2015 I plan on posting MORE blog posts, and working on both books daily, as well as learning a new word, getting back to my exercising since I have kind of flaked off the past several months. I do lots of running around since Jim is not able to go out, or clean, cook etc... so I get lots of "exercise" with all of that, but I need to be back on the stationary bike, out walking daily or trying once again to use my stair climber. Me and that thing have hell, but it is mainly because my feet want to slip and slide all over the place. That does make it difficult to exercise on when you are constantly having to reposition your feet.

Okay, I have done a couple of the "new" items on the agenda, and I stopped a moment to say hello to all. It is hard to believe the holidays are already past, the new year is here, and once again it is back to the "farm" to hitch up the mules, put the crops in order, get kids back to school, and put noses to the grind stone hoping for a better 2015 for many of us.... take it one step at a time, one breaths space at a time, one day, one week, one month... all at a time... slow down, stop. and try your best to "accomplish" something even if it a new word daily, that you can be proud of for 2015... read a book, write a novel, crochet, paint, learn to play an instrument, go back to college, or just spring clean your home and throw away everytthing that has NOT BEEN USED in a YEAR! I have figured out, if something is lingering around my home, whether in my closet as clothes, or dishes, or whatever might be "building up" and not being used... throw it in the recycle bin, take it to Goodwill, give it away, have a garage sale, but take your home to an entire new level... for me that does mean a great deal of getting rid of stuff that is just that stuff that sits around and is either already worn out, or I will never use, or was meant to do one thing or the other but I never got to it... and I am bound and determined, that I am GOING TO PAIN MY KITCHEN and have a new floor put in. IF it "hair lips" Harry as the old saying goes - actually it is "if it hair lips the Pope"... and I am not sure why, but that is how it has been said for eons... I already have colors picked out, and they have an already "pre-cut" cabinet top that is not all that expensive that should replace mine hopefully quite easily... so my hopes are that at the very least I get a "new updated" kitchen, floor to ceiling, and we get the outside of the house painted... of which I can do most of it myself, but I am just so slow, it will take me quite awhile by the time I sand down all of the old paint (Lord I bet there are 5 layers of old paint) on my cabinet fronts. Someone before us never scraped or sanded anything. and then when we got here, it was a hurry up, had our lease on our apartment ending, and did not want to pay another month's rent if possible... so there were somethings we had to kind of just "do half azzed" at the time, in order for us to move in that fine Winter of 2006, which we almost froze our butts off... Lord it was a cold winter that year. Jim was redoing our hardwood floors, and we were concerned about whether that coatings would dry on them fast enough for us... we really needed to scrape those cabinet fronts and doors, but time made us just get it painted and cleaned up so we could get moved in... wow, how the heck we made two huge moves, including coming to Amanda's wedding the Summer before we moved here, then Dad's funeral at the 3rd month of 2005, then we made the major move to San Pedro CA, and withing 3 months were on the road again for a long haul to Ennis....we got here on December 19th, 2005... Amanda had just had James on the 6th of December, and they all came up, well at that time it was Heather, James a new born, Amanda and Jimbo, then Jason and Danielle I believe both came over... I know Jason did... anyway down memory lane... due to me knowing what I could get accomplished then, compared to how long it takes me to accomplish anything now... is like a very long, long distance... Anyway, off to take meds, eat a bowl of cereal or something, and possibly get some writing done.... ;) ,

Covers I am working on for my Two New Books

Sunday, October 12, 2014

PERSONALLY - World Arthritis Day...

Personally, I've not put much up for WAD! I have been so busy wanting to get pertinent information out there from the URL's and so on, that I haven't taken the time to "step up" to the plate and give my own feelings, impressions, and how things are looking for myself and my own issues with Arthritis, both Osteo and RA. My other AI's from Raynaud's to Sjogren's, from Lupus to MCTD, from the upheavel of medications that we are constantly changing to try and find a combination that "works" for me, doctors, new symptoms, how my Medicare Advantage Plan appears to be taking a run for my money next year I fear, to all of the "busi-ness" of life, of the accident of course we are still dealing with, left right and center, to my own personal issues with my writing, and what I want to do at home, versus what my body "thinks" I should do.

My Sjogren's issues are far from over. I still have another at least 6 weeks possibly more, before I am able to really stand to keep them in my mouth all day long, eat with them, and adjust to how they feel. I am learning to
keep them in to eat now, but the bottom plate just does not cooperate as it should. Once those mini implanted pins are set into my bone, that is supposed to stablize the plates, both top and bottom, thus I so hope and pray that is true. I know if this does not do the trick and gets them where they are more comfortable, I may be like my Mom, and have to take them OUT when she eats!!! LOL! I always wondered why when we go out to eat, (she has partial plates not full ones) that she takes both of them out. Now I totally know why she does it. When I eat of course food sticks in them, much like your own teeth BUT, it is not exactly the same. It is much more difficult to get food out of the plates once it gets underneath them and all that packs underneath them. The ONLY way to get it out, is to excuse yourself to the lavatory and clean them out. I would much rather do that though and eat with them in, rather than have them lying on the table as I eat!!! Kind of defeats the entire purpose of having them, and going through all of the trouble, time, pain, and suffering to reach the goal.

The weather is REALLY reeking havoc with many of us. I know here in Central TX we are having a dramatic change in temperature, of humidity even during one day. The humidity might be almost 100% in the morning, and by the afternoon drop to 30 percent. Plus the days are beginning to get "shorter" and I just not am adjusted to the longer days. It really does suck, or at least for myself, it sucks to have yourself in the midst of a change just about the time, your internal clock sets itself.

The Sulfasalazine, which I thought we would be up to 3,000 mg by now. Yet, due to lack of communication between my Rheumatologists nurse, myself and my Rheumatologist had not realized he told me to take 2 of the pills - 1 at a time for the first 14 days. Then begin taking 2 pills at a time, twice daily.  They are 500 mg tablets... so two of them make 1,000 mg a day, then I was to take 1,000 each time and read I could go up to 3 of the pills twice daily, which is usually what an RA patient works up to after a few weeks of the medication. So, 3 at a time would be 1,500 mg and time 2, make 3,000 mg a day. I already know my blood work was okay, because my PCP ran it for my Rheumatologist, and they told me the results when they were faxing it over to the Rheumy.

I am getting quite disenchanted with the biologic medications. First of all, my insurance can't make up its mind which ones it wants to pay for and which not. They used to pay for Humira, Enbrel and Orencia. But, they did NOT pay for Simponi, and when it is an infusion, it is hit and miss as to how and what they pay honestly. I've already tried Rituxan, and the last round, is when I came down so ill with the double pneumonia. Even though I am almost positive the medication only played a small part in the illness, with all that was going on there, my Rheumatologist is not really thrilled about taking a chance again with a biologic that seemed to contribute to me having infections. I show to already be having some chronic lung issues from what the Xrays show from the pneumonia, and it is kind of like an asthmatic chronic COPD thing, although smoking also probably has little to do with it. I smoked a total of about 10 years, and never over 1/2 pack day, most of the time less. I've quit all together, and even though we still have the "e-cigarettes", I am not even really using those. I just am not having any type of "craving" for them. Some days when I am really in horrible pain, and/or really badly stressed out, I may think to myself, damned I wished I had a cigarette, but other than that I could care less. Of course for me, I could go and buy a pack, put them away, and just smoke one when one of those "moments" come... I probably would not even smoke an entire pack in a month, probably more like two months... but if some people have even one, then they have to have it all over again... strange as it sounds its true.... Kind of all an alcoholic or any type of an "addiction" one might have... some people just cannot be satisfied with a tiny bit, and then leave it alone for a long while. Only using that, whatever it may be, only on those horrid days or moments that life feels like it is pulling itself right on over the top of you, and the darkness continues to grow and fill in like a dark black, no way see through ink or pain. 

I've been working on some other "volunteer, activist, advocate, ambassador type of projects", in between all of the doctors, medications. lawyer junk, paperwork, pain, and feeling generally like hell lately. I feel like I have found a couple of places, beside my blog and Facebook pages to truly help others and bring more awareness to all, especially when it comes to our health care laws, Capitol Hill, Congress, and all that can involve. I have come face to face, and toe to toe, with my Federal Congressional Representative Barton, and some of his staff. I have also been trying to find contacts in the office of our Senators here in TX. Actually I am trying to get the attention of both our Federal and our State Legislatures!!

Wow, talk about an education to learn how the wheels (clogs), (clocks esp. cuckoo) ,the bureaucratic bunch of bull red tape, the bend over and kiss butts groups, and talk about really learning how the "cow chews the cud" - I have so seen with my own eyes thinking that I was "up" on the political scene. Well, I have definitely found I had more to learn when it came and will continue to come face to face with the entire ordeal, full circle of how MUCH politics effects EVERYTHING!!! From business, to taxes, from your home, to your safety, from flying to riding in a car, from makeup to your hair coloring, from the BC powder I take, to the prescriptions medications.

It just amazes me the older I get, the more I know, and the more I have to learn about. There is never a day that goes by, that this old dog' seems to learn a few new tricks! I believe that is a portion of your "legacy" of having chronic illnesses, especially Autoimmune Illnesses. You are just given over a brand new educative process... because if you wait to let our "health care nation" educate you, more than likely you will NEVER understand a damned thing that is wrong with you, physically, mentally, emotionally... and within your world. Our "world" in the autoimmune "bu-si-ness", it a totally realm of birth right that has light and dark at the same time shining and blacking out our psyche. If you EVER ARRIVE at that MOMENT you "get it"... you can bet within 24 hours, all you figured out will be shot down, and went to hell in a hand basket, if it has a thing to do with AI diseases, syndromes, illnesses.... have you ever wondered what the difference it is between an "illness", a "syndrome" and a "disease"? I have given thought to it, but up until this minute I guess never decided it was a huge enough ordeal to look it up. But, since I am sitting on that "needle" the proverbial one in the hay stack... I am headed to "google" the differences. I will post them below, before I go on with my blog post.

All of these did come out of a "medical dictionary online"---
 Definition of ILLNESS: an unhealthy condition of body or mind : sickness  
 Definition of DISEASE : an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors : sickness, illness—called also morbus
 Definition of SICKNESS
1: the condition of being ill : ill health
2: a specific disease 
 Definition of SYNDROME : a group of signs and symptoms that occur together and characterize a particular abnormality 
 Definition of PHENOMENON (or Phenomena) as in Raynaud's Phenomena
1: an observable fact or event
2:  a : an object or aspect known through the senses rather than by thought or intuition b : a fact or event of scientific interest susceptible of scientific description and explanation ....
I really do not feel looking up those even in the medical dictionary helped much. They still all come out to the meaning of the odd... but when I have more time, I know there has to be an in depth reason for calling something a "syndrome", rather than a "disease"... or they would just have called EVERYTHING one word... illness, disease, sickness, syndrome, phenomena,  ...


Anyway, I got all off my own thoughts, walked away from the computer and decided to take a long, warm shower. It has cooled off here today and been on of those dreary days of a typical Fall. No sun, all cloudy and our temps have dropped down, and feels like we have had 2 early mornings, at the 57 degree range... Just plain cool first thing in the morning!! And as ALL know or most, BONES and JOINTS that have arthritic issues, or those that have autoimmune illnesses, this time of the year is not our best. Many of us go into almost a "hibernation" mode... We cringe at the thought of the "cold" weather coming in, and the grey days tend to bring on a depressive way of thinking... As we know seasonal depression is always around in the Fall and Winter... and then we have the pressures (if we let them) of the holidays, family, friends, parties, cooking, cleaning and all of that bologna ... as much as we all love family, holidays, friends, and the beauty of the Christmas decorations, trees, all of the sparkling lights... none of that really makes a difference if your body feels like heck... then your holiday spirit feels down in the dumps too.

Around here for me, it has seemingly turned to either feast or famine. I am either running around trying to get everything taken care of, and wondering how I will deal with it all... to the place I am "looking" for stuff to keep be busy. Oh, it is not like I don't have plenty to do, because I can assure you, just right here in the house alone, I have some major projects staring me right in the face.. I really have wanted to redo my entire kitchen, including putting a new counter top on. I was going to just pick one out that is already "pre-made". I noticed they sell them like that at Lowe's.... and it would be perfect for me. I would not have be to concerned about how the heck to do it... it should be more or less pre-pieced for me, and the edges and so forth there to purchase to put the finishing touches on it, I would LOVE to be able to get a TOTAL KITCHEN MAKEOVER!!! New Cabinets at the the doors and hardware, sand all down, brand new handles and pulls... the floor that I've wanted and to repaint it the two blues I've picked out. Then we still have the bathroom that needs the walls completely finished as far as the texture, and even though the lights are up, nothing has been wired in... so the bathfan and all of that I will have to have someone come and help me with that part. I just don't think Jim will ever be able to get back up into the attic again to connect everything. We have it practically finished but that most important part of making sure all is wired in properly, and not going to short out etc... I am not that sure of myself. I've put in water heaters, hung and wired ceiling fans, and done quite a bit of DIY stuff over the years, but between being "eaten alive" by RA, Lupus, Osteo etc... the idea of climbing into the attic and trying to do that sounds like something I should get an expert to do.

Now as far as painting, redoing our music room... getting rid of junk etc... all of those things I will do slowly, and could manage most of it myself... laying the carpet, and then the floor in the kitchen will probably mean getting someone also to help out.

At the time we bought the house, we put a great deal of money in it redoing it. The house was a definite fixer upper, so we redone hardwood floors, completely redid the bathroom even making it twice as big, painted everything inside and out, every room with our "wainscott" look that I am so thrilled with even today. We had to buy all new appliances, had to redo the entire water, sewer, and redo the electrical wiring. The house was in need of so much... and we did manage to do many of the things we planned. As "frugal" as I was though, money ran out before we got through.  

I realize this is "NOT" a typical Autoimmune post full of what all is going on physically, mentally and emotionally in regard to illnesses...

But, I also needed to kind of update everyone about where things stand for myself ...

My plans, and one of those IS to WRITE my BOOK!!!! I've been giving some serious thought to exactly what I want to write; along with how I want to do it. I am keeping the title that Jim came up with, because I believe it will fit when all is done..

I got a bit pissed this week. A guy who also wrote a book of poetry, about 80 poems,  had an "author's reading" and signing at our library!!! Well, everyone made a huge ordeal out of it, even in our daily newspaper.

YET, when I wrote BOTH books... I had to almost beg to get an article in the paper, and I donated copies to our library... and not one soul ever mentioned me reading them, or doing a signing... and MY TWO BOOKS contain about 3 or 4 times the amount in his...

So, I am NOT going to allow that to happen again. My plans are to MAKE SURE I do a reading and signing of my next one... and I hope to have a "full house" at the library as he did....

Sometimes this world is truly NOT fair....

Okay I close for now with I hope you have reflected today on what World Arthritis Day means to you.... and that if you got to go to events etc... that you did so full of joy and meaning... 

Keep watching because they will never get rid of me! :)

Rhia 10-12-2014