Tuesday, May 19, 2015
Clinical Trial Involving High Cholesterol and/or Other things that can possibly contribute to Heart Disease
The SPIRE Program is looking for participants for a Clinical Trial involving High Cholesterol and other issues that may contribute to heart disease. If you are already on medication for High Cholesterol, yet you continue to have issues with it still being high, this clinical trial and research study may be a good fit for you.
This study evaluates the PCSK9 inhibitor, Bococizumab compared to placebo, in reducing the occurrence of major cardiovascular events, including cardiovascular death, myocardial infarction, stroke, and unstable angina requiring urgent revascularization, in high risk subjects who are receiving background lipid lowering therapy and have cholesterol laboratory values of LDL-C >/= 70 mg/dL or non-HDL-C >/= 100 mg /dl
To learn more about this research project and find out if you qualify to participate see:
The full study details and eligibility criteria are listed here.
From there you can fill out an online questionnaire below to see if you are eligible for the trial.
Please complete the online questionnaire to check if you’re eligible for the trial.
You may have questions about participating in a clinical trial and how this will work, Here is a bit of information in regard to clinical trials themselves.
I am including more information below in regard to what clinical trials are about and how they can help you and others as below:
GENERAL INFORMATION
What is a clinical trial?
A clinical trial (also called clinical research) is a research study in human volunteers to answer specific health questions. Carefully conducted clinical trials are the fastest and safest way to find treatments that work in people and ways to improve health. Interventional trials determine whether experimental treatments or new ways of using known therapies are safe and effective under controlled environments. Observational trials address health issues in large groups of people or populations in natural settings.
"MY OWN FEELINGS ARE THAT...Heart disease is something that begins when you are young. The lifestyle you lead, as far as eating habits, exercise, stress reduction, all play an important role in maintaining a healthy life and a healthy heart.
Yet, there are many that suffer from high cholesterol, even though they maintain a "heart healthy lifestyle". Genetics can play an important role in the "clogging" of arteries. Over the years plaque begins to build in your arteries, and eventually can either close off an artery completely or break off and cause a blockage from pieces of that plaque hanging and cutting off oxygen and blood flow.
Therefore it is imperative for everyone who knows they have a "genetic background" (relatives, Father, Mother, Grandparents, siblings and so forth) to be sure and have your cholesterol checked, as well as your blood pressure, heart rate, oxygen levels and so on.
There are also other reasons that cholesterol medications are used. If you have already suffered a heart attack, now they use a combination of certain medications, one of which is a cholesterol, even though you do not have a high cholesterol issue. Several of my physicians have mentioned that those medications taken at a certain dosage together, may help prevent another heart attack by a huge margin. So, cholesterol medications are not just for those with high cholesterol, but for those that may have already had heart disease for other reasons." - All of this is provided by myself, who is a heart attack survivor and my own personal opinions. "Rhia Steele"
***Always see your doctor and/or ask questions about a clinical trial and how it may benefit you or someone you know.
This study evaluates the PCSK9 inhibitor, Bococizumab compared to placebo, in reducing the occurrence of major cardiovascular events, including cardiovascular death, myocardial infarction, stroke, and unstable angina requiring urgent revascularization, in high risk subjects who are receiving background lipid lowering therapy and have cholesterol laboratory values of LDL-C >/= 70 mg/dL or non-HDL-C >/= 100 mg /dl
To learn more about this research project and find out if you qualify to participate see:
The full study details and eligibility criteria are listed here.
From there you can fill out an online questionnaire below to see if you are eligible for the trial.
Please complete the online questionnaire to check if you’re eligible for the trial.
You may have questions about participating in a clinical trial and how this will work, Here is a bit of information in regard to clinical trials themselves.
I am including more information below in regard to what clinical trials are about and how they can help you and others as below:
GENERAL INFORMATION
What is a clinical trial?
A clinical trial (also called clinical research) is a research study in human volunteers to answer specific health questions. Carefully conducted clinical trials are the fastest and safest way to find treatments that work in people and ways to improve health. Interventional trials determine whether experimental treatments or new ways of using known therapies are safe and effective under controlled environments. Observational trials address health issues in large groups of people or populations in natural settings.
What are the benefits and risks of participating in a
clinical trial?
Clinical trials that are well designed and well executed are the best approach for participants to:
clinical trial?
Clinical trials that are well designed and well executed are the best approach for participants to:
-
● Play an active role in their own health care.
-
● Gain access to new research treatments before they are widely available.
-
● Help others by contributing to medical research.
There are also risks to clinical trials:
-
● There may be unpleasant, serious or even life threatening side effects to treatment.
-
● The treatment may not be effective for the participant.
-
● The protocol may require more of their time and attention than would a nonprotocol
treatment, including trips to the study site, more treatments, hospital stays or complex dosage requirements
How is the safety of the participant protected?
The ethical and legal codes that govern medical practice also apply to clinical trials. In addition, most clinical research is federally regulated with built in safeguards to protect the participants. The trial follows a carefully controlled protocol, a study plan which details what researchers will do in the study. As a clinical trial progresses, researchers report the results of the trial at scientific meetings, to medical journals, and to various government agencies. Individual participants’ names will remain secret and will not be mentioned in these reports (See Confidentiality Regarding Trial Participants).
PARTICIPATION
Why participate in a clinical trial?
Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research.
Who can participate in a clinical trial?
All clinical trials have guidelines about who can participate. Using inclusion/exclusion criteria is an important principle of medical research that helps to produce reliable results. The factors that allow someone to participate in a clinical trial are called “inclusion criteria” and those that disallow someone from participating are called “exclusion criteria”. These criteria are based on such factors as age, gender, the type and stage of a disease, previous treatment history, and other medical conditions. Before joining a clinical trial, a participant must qualify for the study. Some research studies seek participants with illnesses or conditions to be studied in the clinical trial, while others need healthy participants. It is important to note that inclusion and exclusion criteria are not used to reject people personally. Instead, the criteria are used to identify appropriate participants and keep them safe. The criteria help ensure that researchers will be able to answer the questions they plan to study.
__________________________________________________________________________________
****BELOW IS MY OWN PERSONAL EXPERIENCE WITH HEART DISEASE AND AN EARLY AGE HEART ATTACK. EVERYTHING BELOW HAS NOTHING TO DO WITH THIS TRIAL AND THEY DO HAVE ANY PARTICIPATION AS I EXPLAIN MY OWN EXPERIENCE. I JUST FELT I WOULD GIVE A PORTION OF MY OWN PERSONAL HEART ISSUES WITH YOU - AGAIN THIS ARE MY OWN FEELINGS AND HAVE NOTHING TO DO WITH THE CLINICAL TRIAL. I AM NOT A PHYSICIAN, BUT A PATIENT WITH HEART DISEASE. ****
Why participate in a clinical trial?
Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research.
Who can participate in a clinical trial?
All clinical trials have guidelines about who can participate. Using inclusion/exclusion criteria is an important principle of medical research that helps to produce reliable results. The factors that allow someone to participate in a clinical trial are called “inclusion criteria” and those that disallow someone from participating are called “exclusion criteria”. These criteria are based on such factors as age, gender, the type and stage of a disease, previous treatment history, and other medical conditions. Before joining a clinical trial, a participant must qualify for the study. Some research studies seek participants with illnesses or conditions to be studied in the clinical trial, while others need healthy participants. It is important to note that inclusion and exclusion criteria are not used to reject people personally. Instead, the criteria are used to identify appropriate participants and keep them safe. The criteria help ensure that researchers will be able to answer the questions they plan to study.
__________________________________________________________________________________
****BELOW IS MY OWN PERSONAL EXPERIENCE WITH HEART DISEASE AND AN EARLY AGE HEART ATTACK. EVERYTHING BELOW HAS NOTHING TO DO WITH THIS TRIAL AND THEY DO HAVE ANY PARTICIPATION AS I EXPLAIN MY OWN EXPERIENCE. I JUST FELT I WOULD GIVE A PORTION OF MY OWN PERSONAL HEART ISSUES WITH YOU - AGAIN THIS ARE MY OWN FEELINGS AND HAVE NOTHING TO DO WITH THE CLINICAL TRIAL. I AM NOT A PHYSICIAN, BUT A PATIENT WITH HEART DISEASE. ****
Yet, there are many that suffer from high cholesterol, even though they maintain a "heart healthy lifestyle". Genetics can play an important role in the "clogging" of arteries. Over the years plaque begins to build in your arteries, and eventually can either close off an artery completely or break off and cause a blockage from pieces of that plaque hanging and cutting off oxygen and blood flow.
Therefore it is imperative for everyone who knows they have a "genetic background" (relatives, Father, Mother, Grandparents, siblings and so forth) to be sure and have your cholesterol checked, as well as your blood pressure, heart rate, oxygen levels and so on.
There are also other reasons that cholesterol medications are used. If you have already suffered a heart attack, now they use a combination of certain medications, one of which is a cholesterol, even though you do not have a high cholesterol issue. Several of my physicians have mentioned that those medications taken at a certain dosage together, may help prevent another heart attack by a huge margin. So, cholesterol medications are not just for those with high cholesterol, but for those that may have already had heart disease for other reasons." - All of this is provided by myself, who is a heart attack survivor and my own personal opinions. "Rhia Steele"
***Always see your doctor and/or ask questions about a clinical trial and how it may benefit you or someone you know.
Sunday, May 17, 2015
Sonograms!!?? Why have Doctors NOT already done these???
This just totally blew me away! I've fussed and griped for YEARS about how each and every time I've had to have a "joint surgery" and how badly I was in pain; plus do to my joint history, the, the DJD. the DDD, the RA, Lupus and the list goes on and on, when I go in with a joint hurting, it usually means we are destined for surgery, maybe even replacement. I recall when my left elbow gave me so much trouble, and not long after my left shoulder began to drive me insane with pain, loss of range of motion, stiffness, and the entire gamut. I went through all of the tests, the MRI's. the CT's, with and without "contrast", X-rays, medication and nothing usually worked. I may have some relief from a corticosteroid injection into the joint, and that may last for a day, month and sometimes even a year. On my right shoulder, I had several rounds of injections, way before we did any type of arthroscopic surgery. Yet, even though all of those "expensive" tests, that were supposed to be the "gold standard" when it came to diagnosis, may show some damage, spurs and so on, BUT, when every surgeon that did my various surgeries actually got to "see" the massive amount of damage in the joint, they then understood why I was so adamant about NOT using those tests as much, as more "heavily weighing" from my long term symptoms, them actually getting worse than ever better, and that there much more damage in the joint than any type of scan, MRI, and so forth ever would show them. In fact, my orthopedic surgeon who did both my complete right reverse shoulder replacement and my 4 level cervical neck surgery, told me himself. The damage was so deep, and it was extremely bad, but there was no way it would have shown on any test. Sam thing with my neck, it was the same with my elbow on the left, my shoulder on the left, and both knees. It never failed that the doctors would always tell me that what they actually saw by doing the surgery, was far more worse, than any type of a scan, MRI and so would have ever shown.
I have also said that I felt that any "scan", MRI, X-ray and so forth is only as "good" as the person it with experience and knowledge to read them. I can just tell, from all I've heard about and read, that often things are NOT found, or they are far worse, than what the "radiologist that read them said.
It just stands to reason, if someone has the "education" yes, that is a huge part of it. But, when you are looking at something as complicated as the inside of a joint, or any organ for that matter, if you don't have not only the knowledge but experience to totally "see" all of that entire ordeal, then all too often, I felt things were ""missed" because of whomever read them, didn't have enough experience or possibly training, to not miss something. Again, this is not just joint related but any type of scan, and so forth, things could be missed, and could cause serious issues if they are not caught in the beginning.
Same way with "blood work"... they are coming to find with many diseases, that all too often that "blood work" again that is supposed to be another "gold standard" for diagnosis, MAT NOT BE accurate. It could have been not processed quickly enough, or no refrigerated in time, or blood work has been known to get "mixed up" and maybe what was read had nothing to do with you. Many may not realize it, but on some of the very complicated blood work that they do, it may be actually "shipped" even out of state to be processed. Some of these tests either take extremely high dollar equipment, time, and the person to make sure it is done accurately. Again, there can be a mix up, something not processed in time, left out too long, or any number of things could "go wrong" before the actual test is ran, and the outcome that is "right", could be wrong.
I know I am NOT the ONLY PERSON who has been through this very issue. Even when I had the double hernia's. I had 2 doctors, a sonogram tech, a PA, ALL miss the HERNIA"S!! I knew they were there. I even told them exactly how to locate them, and why they would not locate them if I lie down, they would kind of "settle" down into my abdomen, and then they were difficult to locate. Yet, I have one huge lump on the left, and the one on the right had just began to show. I finally went to a regular SURGEON. He "found" them immediately and said I needed to have them both repaired before they got worse. The one on the left was already getting fairly large and the right one was headed that way.
Yet, even with a sonogram, 2 doctors, and one PA all doing an exam, none of them found them whatsoever. Yet, I was persistent, that I would NOT take "no" for an answer. I had at least ONE hernia, and I planned on getting someone to freaking listen!
Well the week after seeing the surgeon, I went in and had a double hernia repair.
So, went it with my elbow, my knees, both shoulders.... no matter how many scans, tests, reports, experts, and all that are involved WE, KNOW our BODIES better than anyone else. And if YOU FEEL SOMETHING IS NOT RIGHT, then do NOT TAKE NO FOR AN ANSWER! CONTINUE TO go onto other doctors until someone can give you an explanation that at the very least makes sense!!!
This day and age about "people" not being "educated" about medical problems, especially chronic ones, has far past us. The majority of this nation and around the globe, with the internet, and so many "reliable" web sites, doctors, specialists, documentation, everywhere can absolutely have a great deal of information about "possible" things that could be wrong, to others letting them know possibly how they dealt with a certain treatment, or surgery... and YES, there is also some BAD information out there too You must use you "brain and common sense" when it comes to weeding out the "good info" from the 'bad info"....
So, I totally understand doctors that get a bit annoyed with a patient that comes in and begins to tell them they know what is wrong with them, because they read it online, they heard it on day time TV, or several of their online friends have the same issue.
I get their point. But, when I go in, I don't begin to "rattle off" what I've found online, I usually go in with a "list".... and I ask questions, about certain things I may have read online. Yet, I try not to put my foot down and say "I know what it is because I found out about all of it, here, there or yonder. But ALWAYS TAKE A LIST!!! I can guarantee even though you may have a photographic mind, and like myself I used to be able to do all kinds of things and multitask. Yet, now days, as soon as I walk into the doctors office, I've without a list I would forget have of what I went to ask about. Thus that list helps to keep YOU focused, and also let them know what kinds of things maybe going on with you, that can help them to make a better "guess-ta-ment" or find the answers to whatever is going on with you and your health.
So, now I get to the article below. Which talks ALL about the VERY thing I've been fussing and griping about!!! A very SIMPLE test, that is certainly NOT INVASIVE, and it MUCH CHEAPER than many of these other tests, that give the doctors, a much better look at what might really be going on, especially when it comes to joints, inflammation and on forth.
So, PLEASE take a moment, and read this below!!! Then PLEASE share it with your own friends and those who have been through hell and back, sometimes for YEARS trying to get a right and accurate diagnosis!
I have already got it where I can print it and take it to my own doctors!!! I think they all need a "wake up" call.
http://rawarrior.com/professionals-call-for-ultrasound-use-in-rheumatoid-arthritis/
I have also said that I felt that any "scan", MRI, X-ray and so forth is only as "good" as the person it with experience and knowledge to read them. I can just tell, from all I've heard about and read, that often things are NOT found, or they are far worse, than what the "radiologist that read them said.
It just stands to reason, if someone has the "education" yes, that is a huge part of it. But, when you are looking at something as complicated as the inside of a joint, or any organ for that matter, if you don't have not only the knowledge but experience to totally "see" all of that entire ordeal, then all too often, I felt things were ""missed" because of whomever read them, didn't have enough experience or possibly training, to not miss something. Again, this is not just joint related but any type of scan, and so forth, things could be missed, and could cause serious issues if they are not caught in the beginning.
Same way with "blood work"... they are coming to find with many diseases, that all too often that "blood work" again that is supposed to be another "gold standard" for diagnosis, MAT NOT BE accurate. It could have been not processed quickly enough, or no refrigerated in time, or blood work has been known to get "mixed up" and maybe what was read had nothing to do with you. Many may not realize it, but on some of the very complicated blood work that they do, it may be actually "shipped" even out of state to be processed. Some of these tests either take extremely high dollar equipment, time, and the person to make sure it is done accurately. Again, there can be a mix up, something not processed in time, left out too long, or any number of things could "go wrong" before the actual test is ran, and the outcome that is "right", could be wrong.
I know I am NOT the ONLY PERSON who has been through this very issue. Even when I had the double hernia's. I had 2 doctors, a sonogram tech, a PA, ALL miss the HERNIA"S!! I knew they were there. I even told them exactly how to locate them, and why they would not locate them if I lie down, they would kind of "settle" down into my abdomen, and then they were difficult to locate. Yet, I have one huge lump on the left, and the one on the right had just began to show. I finally went to a regular SURGEON. He "found" them immediately and said I needed to have them both repaired before they got worse. The one on the left was already getting fairly large and the right one was headed that way.
Yet, even with a sonogram, 2 doctors, and one PA all doing an exam, none of them found them whatsoever. Yet, I was persistent, that I would NOT take "no" for an answer. I had at least ONE hernia, and I planned on getting someone to freaking listen!
Well the week after seeing the surgeon, I went in and had a double hernia repair.
So, went it with my elbow, my knees, both shoulders.... no matter how many scans, tests, reports, experts, and all that are involved WE, KNOW our BODIES better than anyone else. And if YOU FEEL SOMETHING IS NOT RIGHT, then do NOT TAKE NO FOR AN ANSWER! CONTINUE TO go onto other doctors until someone can give you an explanation that at the very least makes sense!!!
This day and age about "people" not being "educated" about medical problems, especially chronic ones, has far past us. The majority of this nation and around the globe, with the internet, and so many "reliable" web sites, doctors, specialists, documentation, everywhere can absolutely have a great deal of information about "possible" things that could be wrong, to others letting them know possibly how they dealt with a certain treatment, or surgery... and YES, there is also some BAD information out there too You must use you "brain and common sense" when it comes to weeding out the "good info" from the 'bad info"....
So, I totally understand doctors that get a bit annoyed with a patient that comes in and begins to tell them they know what is wrong with them, because they read it online, they heard it on day time TV, or several of their online friends have the same issue.
I get their point. But, when I go in, I don't begin to "rattle off" what I've found online, I usually go in with a "list".... and I ask questions, about certain things I may have read online. Yet, I try not to put my foot down and say "I know what it is because I found out about all of it, here, there or yonder. But ALWAYS TAKE A LIST!!! I can guarantee even though you may have a photographic mind, and like myself I used to be able to do all kinds of things and multitask. Yet, now days, as soon as I walk into the doctors office, I've without a list I would forget have of what I went to ask about. Thus that list helps to keep YOU focused, and also let them know what kinds of things maybe going on with you, that can help them to make a better "guess-ta-ment" or find the answers to whatever is going on with you and your health.
So, now I get to the article below. Which talks ALL about the VERY thing I've been fussing and griping about!!! A very SIMPLE test, that is certainly NOT INVASIVE, and it MUCH CHEAPER than many of these other tests, that give the doctors, a much better look at what might really be going on, especially when it comes to joints, inflammation and on forth.
So, PLEASE take a moment, and read this below!!! Then PLEASE share it with your own friends and those who have been through hell and back, sometimes for YEARS trying to get a right and accurate diagnosis!
I have already got it where I can print it and take it to my own doctors!!! I think they all need a "wake up" call.
http://rawarrior.com/professionals-call-for-ultrasound-use-in-rheumatoid-arthritis/
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. http://blog.arthritis.org/news/arthritis-awareness-month/
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....
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. http://blog.arthritis.org/news/arthritis-awareness-month/
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!
-
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/
Wednesday, May 13, 2015
WAAD 15 - Begins Friday! The "race around the globe for Autoimmune Arthritic Awareness!
In
addition to the online race, with 2 dozen nonprofits competing to win
WAAD15 while spreading education and awareness around the world, we have
MORE for you during the 6 day online World Autoimmune Arthritis Day
experience!
There are FIVE webinars you can register for as well. IF you are also registering to officially play WAAD15 then these webinars can earn you major mileage points for yourself!*
The second webinar of the event is Saturday night (USA) at 7:00 ET (9am AUS/11am New Zealand, Sunday), which deals with the frustrations of awareness, delay in diagnosis, and access to treatments- all associated with living with an autoimmune arthritis disease. The official Hosts and Event Coordinators of WAAD15, International Foundation for Autoimmune Arthritis will be leading this session. There will also be a special feature discussion on PsA with guest Marel Pike, from Secret Psoriatic Arthritis Business, and materials referenced from the National Psoriasis Foundation and IFPA (International Federation of Psoriasis Associations).
This will be a casual, "chat" type webinar with a Q and A session at the end.
You can register for this FREE webinar here: https://attendee.gotowebinar.com/regist…/6827783956463713793
You can learn more about WAAD15 at www.worldautoimmunearthritisday.org!
*While it's not required to register FOR FREE to play along with WAAD15 you still should to get the full experience. First, your registrations earns your 3 favorite nonprofits 25 mileage points each towards winning WAAD15 and enables YOU to log mileage points as an official WAAD15 player...so YOU can win prizes too! You can learn all about WAAD15 and register to play along at www.worldautoimmunearthritisday.org
There are FIVE webinars you can register for as well. IF you are also registering to officially play WAAD15 then these webinars can earn you major mileage points for yourself!*
The second webinar of the event is Saturday night (USA) at 7:00 ET (9am AUS/11am New Zealand, Sunday), which deals with the frustrations of awareness, delay in diagnosis, and access to treatments- all associated with living with an autoimmune arthritis disease. The official Hosts and Event Coordinators of WAAD15, International Foundation for Autoimmune Arthritis will be leading this session. There will also be a special feature discussion on PsA with guest Marel Pike, from Secret Psoriatic Arthritis Business, and materials referenced from the National Psoriasis Foundation and IFPA (International Federation of Psoriasis Associations).
This will be a casual, "chat" type webinar with a Q and A session at the end.
You can register for this FREE webinar here: https://attendee.gotowebinar.com/regist…/6827783956463713793
You can learn more about WAAD15 at www.worldautoimmunearthritisday.org!
*While it's not required to register FOR FREE to play along with WAAD15 you still should to get the full experience. First, your registrations earns your 3 favorite nonprofits 25 mileage points each towards winning WAAD15 and enables YOU to log mileage points as an official WAAD15 player...so YOU can win prizes too! You can learn all about WAAD15 and register to play along at www.worldautoimmunearthritisday.org
Just wanted to remind everyone to go to the WAAD15 Website and Register for FREE! This year the event will run for about 5 to 6 days, and will have some of the best information from many sources when it comes to Autoimmune Arthritis - More information is listed below and the URL you can go to for registering
and more...
and more...
The Arthritis Foundation Being an Ambassador & Just how incredible of a Foundation it is.
I've talked a great deal here on my blog, as well as on Facebook, in emails to friends and family, along with spreading the word here in my hometown, and even in our local newspaper, I've had a couple of articles published.
I know at times when we think "non-profit", charity organization, or other ways they are often referred to, it gives the idea that they "collect money through donations" and use those to help others, possibly for some research, and so forth.
Actually, that is not all that the Arthritis Foundation does at all. They are an incredible Foundation, created by some fantastic people, that have changed the face of arthritis throughout the world. They bring "patients" and "caretakers", even our youngest of patients the kids with Juvenile Rheumatoid Arthritis, and have them involved in the annual "Summit on the Hill" each March on Capitol Hill in D.C. in order to have more funds, more awareness, and more support through Caucus' and those Representatives that can help to make research, awareness, and also others types of assistance available for patients, families and caretakers.
They are a true leader when it comes to "arthritis". Whether it be Rheumatoid Arthritis, Osteoarthritis, and Juvenile RA, and/or the complications of those to a standstill. They feel that anyone that has to suffer from these horrid diseases, that can't get the medications and care they need in order to have a normal life, as being totally not acceptable in any shape or form.
They are warriors in the battle of these horrid illnesses and diseases. They have made an impact through not only the Federal Levels of government, but also in our States legislation to chance things so that "we" as patients can have affordable medications, access to the proper care, making sure that "generic" medications are virtually the same as the original name brands.
Not only do they hold the annual Summit each year and see each and every Senator/staff and/or Representatives, they have also changed things that were very wrong with insurance coverage for people with these illnesses, and helped to stop the "insurance" companies from telling the doctors what or what they cannot give to their own patients.
They have also along with the Department of Defense started a program years back, where our women and men that come out of duty home, all too often to suffer from some type of arthritis and/or autoimmune illness, have a "face and name" in that respect. There are studies about why so often a "well" soldier comes in from a stent of duty, only to realize they have been "taken down" by some type of arthritic ailment. The chances of that grows higher each year, with troops coming home to be in much more pain and suffering than to be in the wars.
The "AF" Arthritis Foundation provides dozens of opportunities for those who wish to become a "voice" by being able to become an Ambassador, help with other volunteer efforts, write letters and emails to your representatives, attend different events, such as the "Jingle Bell Run" and the latest which is the annual "Walk for Arthritis".
Over and above all of those, they also have events for those kids with Juvenile RA. They have week long camps, are also there at times to speak to the Congress, and help in some many ways when it comes to fighting for a cure for these diseases.
So, whether you are able to give a few hours of your time to help out, send out emails, hand out information to others in your community, do a local fundraiser, get the word out like this through blog postings, social media, your local government, newspapers,attend a "Town Hall Meeting", or however you can give of your time, all of those things and so much more are crucial to "solve the mysteries" of these life altering diseases.
and be a "Champion of YES!"
I know at times when we think "non-profit", charity organization, or other ways they are often referred to, it gives the idea that they "collect money through donations" and use those to help others, possibly for some research, and so forth.
Actually, that is not all that the Arthritis Foundation does at all. They are an incredible Foundation, created by some fantastic people, that have changed the face of arthritis throughout the world. They bring "patients" and "caretakers", even our youngest of patients the kids with Juvenile Rheumatoid Arthritis, and have them involved in the annual "Summit on the Hill" each March on Capitol Hill in D.C. in order to have more funds, more awareness, and more support through Caucus' and those Representatives that can help to make research, awareness, and also others types of assistance available for patients, families and caretakers.
They are a true leader when it comes to "arthritis". Whether it be Rheumatoid Arthritis, Osteoarthritis, and Juvenile RA, and/or the complications of those to a standstill. They feel that anyone that has to suffer from these horrid diseases, that can't get the medications and care they need in order to have a normal life, as being totally not acceptable in any shape or form.
They are warriors in the battle of these horrid illnesses and diseases. They have made an impact through not only the Federal Levels of government, but also in our States legislation to chance things so that "we" as patients can have affordable medications, access to the proper care, making sure that "generic" medications are virtually the same as the original name brands.
Not only do they hold the annual Summit each year and see each and every Senator/staff and/or Representatives, they have also changed things that were very wrong with insurance coverage for people with these illnesses, and helped to stop the "insurance" companies from telling the doctors what or what they cannot give to their own patients.
They have also along with the Department of Defense started a program years back, where our women and men that come out of duty home, all too often to suffer from some type of arthritis and/or autoimmune illness, have a "face and name" in that respect. There are studies about why so often a "well" soldier comes in from a stent of duty, only to realize they have been "taken down" by some type of arthritic ailment. The chances of that grows higher each year, with troops coming home to be in much more pain and suffering than to be in the wars.
The "AF" Arthritis Foundation provides dozens of opportunities for those who wish to become a "voice" by being able to become an Ambassador, help with other volunteer efforts, write letters and emails to your representatives, attend different events, such as the "Jingle Bell Run" and the latest which is the annual "Walk for Arthritis".
Over and above all of those, they also have events for those kids with Juvenile RA. They have week long camps, are also there at times to speak to the Congress, and help in some many ways when it comes to fighting for a cure for these diseases.
So, whether you are able to give a few hours of your time to help out, send out emails, hand out information to others in your community, do a local fundraiser, get the word out like this through blog postings, social media, your local government, newspapers,attend a "Town Hall Meeting", or however you can give of your time, all of those things and so much more are crucial to "solve the mysteries" of these life altering diseases.
Please go to:
I will post more about my own "Ambassador" role, and in fact I was made a "Platinum Ambassador for 2014! Which is another one of those incredible honors bestowed on those that give of themselves and of their time to make a difference for "every one"!
Below explains more in detail of just how crucial it is to be a "Champion of Yes!
Champion
of Yes.
Our Voice Resonates Loud and Clear
All-In
We are all driven by a passion and commitment to work that goes beyond the call of duty.
Expert
We continually strengthen our longstanding track record of leadership, and apply our authority to initiatives that are escalating technological, medical and scientific advancements every day.
Bold
We are tenaciously and aggressively attacking arthritis and its effects, with a loud voice and loyal persistence that will never back down.
Ever Present
We are here for the long haul —when, where and how people need us — maintaining relevance in every field and facet that affects arthritis.
Brave
Together, in the face of darkness, we possess an optimistic outlook and winning spirit that courageously leads us.
All-In
We are all driven by a passion and commitment to work that goes beyond the call of duty.
Expert
We continually strengthen our longstanding track record of leadership, and apply our authority to initiatives that are escalating technological, medical and scientific advancements every day.
Bold
We are tenaciously and aggressively attacking arthritis and its effects, with a loud voice and loyal persistence that will never back down.
Ever Present
We are here for the long haul —when, where and how people need us — maintaining relevance in every field and facet that affects arthritis.
Brave
Together, in the face of darkness, we possess an optimistic outlook and winning spirit that courageously leads us.
arthritis.org
Arthritis is a thief. People with arthritis know
this full well. It steals everyday joys and long-
term dreams. It isolates and ostracizes.
It is painful. It induces a spirit of No.
As people close to the Arthritis Foundation, we know that it doesn’t have to be this way. We are in a unique place of authority and action, with the purpose of finding a cure, but also fighting for the everyday victories.
We Exist to Conquer Arthritis
The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community.
Plan for Yes
We chart the course for the arthritis community, helping families develop personalized plans for saying Yes — day after day.
It is painful. It induces a spirit of No.
As people close to the Arthritis Foundation, we know that it doesn’t have to be this way. We are in a unique place of authority and action, with the purpose of finding a cure, but also fighting for the everyday victories.
We Exist to Conquer Arthritis
The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community.
Plan for Yes
We chart the course for the arthritis community, helping families develop personalized plans for saying Yes — day after day.
Tuesday, May 12, 2015
Sjogrens' Syndrome Foundation - Walk A Bouts for May the Annual Awareness Month
I was
trying to put a message on Twitter but of course stupid me, was not
thinking, so This horrid disease like a thief in the middle of the night
stole ALL of my TEETH within a year!!~ Not only has it taken my teeth
and created a HUGE expense for "special
dentures" but it truly messed with my own self-esteem! Even though I
have the dentures, I must take them out completely at night every night,
and sometimes at home, I don't put them in for several hours. When I
look in the mirror at myself with them not in, I appear to be a 90 year
old woman with all the wrinkles, no lips, and the "sunk in" way my face
looks. that are not there unless the dentures are in. So, I attest to
this disease needing MORE research, Actually, there is not ONE
medication for "Sjogren's". There are a couple of meds that may help
"somewhat" but neither of them really work very well. I take on of them
daily "pilocarpine" and I truly don't see much of a difference. ...
Like ALL autoimmune illnesses, they cause so very much more "damage" to
the body, that often we may not realize until, like myself, my teeth
began to fall out, from the gum line... even taking medication using
everything I could for cry mouth, chewing sugar free gum and always
sipping on something - so there is not a thing I could have done or not
done to keep this from happening.
When Life changes upon a "dime"... how do you cope? "It is not easy to be... me"...
Further information on our friend and client in Seattle. He may have that portion of his skull that they removed off for even a year. He will have to wear a helmet to protect his brain during that time (which I had also read). They will "freeze" that part of his skull in a special way and then can put it back later after things are settled. They say that even though he is responding and seems to know everyone and so forth, he seems to have no movement in his left side of the body at all right now. What really makes this difficult on Jim, my husband, is that after the accident a year ago, he is also basically left with his left side also the one with the most damage. Of course Jim's is from the nerve damage of the spine being basically "broken" from C-7 through T-7. But he continues to "regain" more use all the time in little ways. The nerves can somewhat regenerate, even though just a few years back, they thought they could not. Researchers now know that some nerves can definitely "heal" themselves, it just sometimes takes months or even years for that to happen. Fortunately it seems that his "autonomic" nerve system is intact. Even though they have him on a vent, he is breathing over and above it on his own. So, it will be a moment by moment watch for him. We never really have gotten exactly what happened, but it appears the brain bleed was probably stroke related. So, only time will tell. I am sure the biggest concern now, is of course the swelling on the brain, and fluid, he is extremely "puffy", his face and all are so swollen that he cannot hardly open his eyes. But, also I am sure they are watching and treating him for another bleed of the brain, or a blood clot would be my guess they would be concerned about now... so please continue to say prayers for them. As I said he and his wife have been "clients" now for over 10 years. Yet, before that Jim and he were friends at least 7 or more years before that. They own an online retail store, and he also has a business set up on E-bay. So that makes this even much more difficult. They were kind of "a family" business and needed to ship out parts daily all over the world. So, his wife is probably just in a terrible state trying to keep up with business and feeling badly she can't be with him all the time also. AGain, much like Jim and I a year ago. I needed to be home taking care of things here, and there was so much to make sure was taken care of after the accident, and then split my time being with his in Dallas at the hospital also. It certainly was not a great time in our lives, and in all honesty, things will never be the same for us. It has really taken its toll on the both of us in so many ways... more than you can know... and more than what we even thought it would. As I had said we would have to find a "new normal"... well that new normal changes from moment to moment. Between my own health issues, and all I have to take care of daily, and then Jim's lack of being able to do so many things, and his disability also, we both are truly at times on overload... I find us sometimes going for days and not really saying much to one another. We seem to get to a place that we are lost in our own thoughts, and tend to keep them to ourselves. I know I feel as if I am walking on egg shells all the time, and I am sure he feels the same. There seems to be "drama" about something every day... and now here I face this very invasive discograph, later in the month, again I cannot drive myself from, and then what if I have to have back surgery?? That is just another issue we face, and how we will get through that? I probably may not be able to drive for a few weeks... and who will take care of the dogs, and feeding us, and doing all of the errands and so on... so you can see, and all of you that have been through or are going through similar issues can relate....
When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....
When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....
Monday, May 11, 2015
A VERY "BLAH" Monday!
Well for many of us we got to celebrate a wonderful Mother's Day!!! Then for all of us, like myself, that got tremendously hindered by severe weather, we shall have to have a later celebration.
Well, I hope to be able to. I changed my reservations AGAIN for the 4th time for Winstar in OK. Yet, even this next weekend shows that we could be right in the same shape again, bad, bad and more bad weather. So, we shall see how the week goes.
Plus I am not feeling well at all today. I really felt lousy all weekend. Between allergy mess, my hips and legs, my right shoulder blade for some reason, and just a general upset stomach, and feeling like the fatigue has kidnapped my body and take it over, I just feel like HELL honestly!
Of course for now the "severe weather" has moved on, but I am sure it will come again soon, from what my joints say, and my body, plus of course the "forecast".
So, I am not going to be online much today. I got involved in baking, and all of that yesterday, so I really didn't spend much "down time" for Mother's Day. So, today I am headed for the sofa with my pups to hopefully get some relaxation, rest, and get this awful fatigue under control once again.
I am never "far away" so send me a message, email etc... I will be checking my computer off and on during the day....
By the way, our friend and client, did go through about 4 hours of surgery on his brain last night due to the hemorrhage. The removed a piece of his skull in order to create room for the swelling and to relieve the pressure from his brain. It seems he is "stable", but they are still not quite sure what caused the brain hemorage yet. He is somewhat alert, and responding. Plus they said his "breathing" is over and beyond the ventilator, so that is a very good thing. But, he has NO movement at all right now on the left side of his body. The bleed seemed to be on the right, so that would make sense.... I shall post more later when I get updated! Thanks for all of the thoughts and prayers.
Well, I hope to be able to. I changed my reservations AGAIN for the 4th time for Winstar in OK. Yet, even this next weekend shows that we could be right in the same shape again, bad, bad and more bad weather. So, we shall see how the week goes.
Plus I am not feeling well at all today. I really felt lousy all weekend. Between allergy mess, my hips and legs, my right shoulder blade for some reason, and just a general upset stomach, and feeling like the fatigue has kidnapped my body and take it over, I just feel like HELL honestly!
Of course for now the "severe weather" has moved on, but I am sure it will come again soon, from what my joints say, and my body, plus of course the "forecast".
So, I am not going to be online much today. I got involved in baking, and all of that yesterday, so I really didn't spend much "down time" for Mother's Day. So, today I am headed for the sofa with my pups to hopefully get some relaxation, rest, and get this awful fatigue under control once again.
I am never "far away" so send me a message, email etc... I will be checking my computer off and on during the day....
By the way, our friend and client, did go through about 4 hours of surgery on his brain last night due to the hemorrhage. The removed a piece of his skull in order to create room for the swelling and to relieve the pressure from his brain. It seems he is "stable", but they are still not quite sure what caused the brain hemorage yet. He is somewhat alert, and responding. Plus they said his "breathing" is over and beyond the ventilator, so that is a very good thing. But, he has NO movement at all right now on the left side of his body. The bleed seemed to be on the right, so that would make sense.... I shall post more later when I get updated! Thanks for all of the thoughts and prayers.
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