Friday, May 22, 2015

WOW!!!! Talk about OVERWHELMING!!!!!

I wanted to reach out to all of you that come and read on my blog. I realize that I was not getting it "out there" like I needed to.


Then between becoming a voice, advocate, an Ambassador, A Platinum Ambassador, Activist, and volunteer, I began to be able to have a better audience.

I have several to thank for this but I will say THANKS ALL OF YOU!!!

Right now I have had MORE page views than any other time of this blog... and I have had 335 so far today!!!!!! 

That is just totally mind boggling!!!


I am in support of a great deal of Organizations who are moving forward to make life different in good ways for so many chronically ill, chronic pain patients, autoimmune illnesses, arthritic illnesses... and I know being a "part" of those has helped me "round my field" of my "audience"....

I feel I should shout out to a few, but I hope I don't leave anyone out...

My heart felt thanks and more to...

The Arthritis Foundation

WEGO Health

Cure Click (a part of WEGO)

WEGO "Health Hero's"

International Autoimmune Arthritis Foundation

The Pain Foundation

The Sjogren's Foundation

The Lupus Foundation

Lupus Research Institute

Rheumatology

Power of Pain Foundation

Alliance for Lupus Research

and the list goes on and on... I probably need to update the list on my blog right now.... to ALL of you... thank you for your believing in me, for listening when things really suck, for "celebrating the good things", for showing me new ways, and a new day when it comes to living with some of the horrid diseases and illnesses.... Without all of you, all of THIS would not be possible!!!




Thursday, May 21, 2015

Women, Fashion, and Our Health "HIGH Heels" How many of us would say "we don't like them?"

As I had posted on my Facebook page, that all of us as women, and especially those who have worked or work in many type of business scenes, of course felt HIGH heels, were almost a must.

I know for myself, being in the banking industry for so many years, and then in a business office for a hospital for years also, for the most part dresses, or skirts and tops/suits were a requirement. It just made sense to have a nice pair of heels to go with certain attire. Or take for instance, going "out of the town", or to a party! If a woman is dressed to the "nine's" in a beautiful evening gown, heels are usually a must. I admit I had a pair colored for just about every outfit I owned. Yellow, several pairs of black and red heels, white, orange, green, royal blue, silver, and some of course that have been my favorites are platforms heels. I have two pair in my closet right now that are about 6 inches and platform. I LOVE those heels! I got those back years ago, before "platforms" and "extreme heels" were in fashion. At that time it was almost hard to find a platform very high heel, let's say like my idol "Stevie Nicks" wears.... and at past 60 years old, probably closer to 65, she STILL wears them! And she still ROCKS the stage.


Yet, most of us knew and know that heels are horrible for your back, legs, feet, and body in general. If you take a "spill" in a pair, you can do some damage to yourself also.

So, now at just over 50, if I could still "rock" those heels, believe I would. I still have my white pair from my wedding, and I have a pair of black patent ones that I still brave at times.

But, I've had two knee replacements, a complete shoulder replacement, a neck surgery, more issues with my lumbar spine now and legs. Plus I have osteoporosis. So, me trying to wear a pair of really high heels, could cause several broken bones, if I were to fall.

I still love them. Each time I walk by the shoe department in some of the upscale places, I almost cry, because I could and would love to have a pair of several each time I see them.

But, as this article states, they are not good for us at all, and quite frankly most of us, if we really tell the truth, they are uncomfortable on our feet. After walking in them for a while, it is just horrible, yet we put up with them in the name of "fashion".

So, here is the URL to the article:


http://www.bbc.com/news/health-13725998?post_id=10205650591438923_10205650591398922#_=_

Now these are what I miss!!!

Tuesday, May 19, 2015

May 20th is National Clinical Trials Day!!!













A New Day and A "New Way" to try and Simplify Clinical Trials for those who would like to either try one or know more about them.




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.
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:
  • ●  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. ****



"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.




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/

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, 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



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...