WEGO HEALTH - Following Fridays And I was Thrilled to Be Sponsored! Thank you WEGO Health for Acknowledging Us Patient Leaders!

I am so proud to be a part of WEGO Health!

https://www.instagram.com/p/CIGU0BZj6n9/WEGO Health _Patient Leader Recognition

Come in Today, Join WEGO HEALTH to Advocate as a patient Advocate Leader & Help Hundreds and yourself!

            

                                            Come and Join in being...

A Patient Leader with WEGO Health! Truly an amazing way to help others, yourself,

caretakers, or anyone who would like to take some time with advocacy! Let your voice,

and your words truly be heard and shall bring assistance, information and so much

more that could use your Patient Leader skills to change lives forever!

                        https://www.wegohealth.com/register/invite/Rhia

WEGO HEALTH PATIENT LEADERS do everything for many, many types fo illnesses... N Matter whether yu blog, write, do social media, give U-Tube virtual information, love a challenge especially when it comes to the healthcare field, JOIN WEGO HEALTH

            

 

New Federal Task Force to Address Opioid Prescribing

New Federal Task Force to Address Opioid Prescribing: By Pat Anson, Editor

The federal government is forming another advisory panel to study and
develop 'best practices' for treating acute and chronic pain. And for the
first time, the feds are seeking nominations from the public for members to
serve on the panel, who would represent



SERIOUSLY MAKING A NOMINATION OF MYSELF TO BE IN THIS SPECIAL TASK FORCE!

WEGO Health Blog 2016 November 29th Challenge - Have I checked out some others bloggers and #HAWMC Fellow bloggers -Choose a few I liked and repost to my Blog!

This is a very difficult choice to make because EVERYONE'S are GREAT! Information, giving of "self" in an unselfish way, bearing your own health burden's and life challenges for ALL to see - - - - - - - - -  

 

WEGO HEALTH

I am always so thrilled to participate and interact with ALL of the people there. ALL of you ROCK!!!

So, it is a "trying" time to make sure I give "back" to those who gave me so much, either through their own blog posts, or their comments about mine! I've learned a great deal about illnesses, about other bloggers, about how there are those that do CARE, and they "give of themselves" often "Bearing their Souls" about life, pain, chronic illnesses, being a caretaker, and the REST of what WEGO Health Helps to Teach us!

So, Here are a few of my re-posts:

Day #4 What Superpower would you like to have: Kristen's re-post form the FB Page : 

https://www.facebook.com/hashtag/hawmc?source=feed_text&story_id=223721238058496

Kristen WEGO - My superpower would be patience! Yes I count that as a superpower. Challenging yoga class this morning and a challenging first time working with clay this afternoon. Finding myself frustrated and pushing for perfection but remembering to have patience and to accept where I'm at 👌🏼My vase may be crap but at least I'm rockin my awesome Bipolar tee from @GabeHoward to help #Stompstigma

Day #1 on Julie Cerrone's  - FB Link - https://www.facebook.com/itsjustabaddaynotlife/

 Her Blog Repost I liked is at:

http://www.itsjustabadday.com/2016/11/01/hawmc-say-what/ 

Day #29 - "What I Wished I had known Before:

 On blog post - Captain Jackson's Hemophilia Adventure 

Day #4 by one her blog (re-post) Blog Name - Inflamed and Untamed!

http://www.inflamed-and-untamed.com/post/115526791992/why-having-a-chronic-illness-drove-me-to-need

Day #11 - Your Top Ten - From Blog "Journeying Beyond Breast Cancer" Re-Post

https://journeyingbeyondbreastcancer.com/2016/11/11/day-11-hawmc-whos-in-your-top-ten/ 

These are just a very few that touched me in one way or the other - I could name almost everyone I got to read, and will be reading over the next weeks, so I can really get to know so many of these great people and awesome Bloggers!!!!!! Rhia

 

"GIVING TUESDAY" A TIME TO GIVE BACK" TO SO MANY THAT HELP US IN ALL KINDS OF WAYS! November 29th, 2016

"GIVING TUESDAY" A TIME TO GIVE BACK" TO SO MANY THAT HELP US IN ALL KINDS OF WAYS! November 29th, 2016

#GivingTuesday.

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Browse charities and tools to get involved on our website:

www.givingtuesday.org

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Like us on Facebook:

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Email us anytime to share stories, content, or to talk to a

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Day 9 - "Happy Hump Day" WEGO Health Blog Challenge - "What would be my "perfect" Day"?

First answer, going to the Casino... to stay overnight and get away from ALL of the illness, medications, cleaning, stress, loss of my Mom, and the grief from dealing with all that comes along with having to take care of everything after losing a parent or loved one. Being the "caretaker" before, while and after they are ill, and then pass away.

OF course that is a "1st" answer and it is extremely true, when it comes to wishing for the "perfect day" for myself right now. When "you" are chronically ill, chronically in pain, and most days you never know if you shall wake up feeling "good", "bad", horrible, or even on those rare occasions "WONDERFUL"; you hope for more of those wonderful days.

That does not mean ones that give me the time to go to the Casino for an overnight stay necessarily, but those or at least one or two, that give me the ability to get up, with pain and illness that is as less as possible. A day that the sun is shining, the weather is not to warm or not too cool, that day I can clean my home, go run errands, go to the market, maybe make a great meal, even in the slow cooker, play with my pups, have time to go outside, trim a few limbs from my trees, tend to my yard a bit, and even at the end of that day, not feel as if a "tractor trailer" had ran over me.

Yet, for many of us, we realize that "good" day, that leads us to be able to do those small or large things we want to do, shall probably lead to the next few days of being in pain, not feeling well, and having to "recover" from that one or two days we felt well enough to go out and feel "normal" for a bit of time.

For me, that is a perfect day. Those that come, where I get up, not as in much pain, not so fatigued, and I do feel like taking a shower, dressing up, putting on my makeup, fixing my hair, and going out to do errands, shop, wash my car, and not look "sick". It seems those days are rare. Oh, the shower, and running errands I do, but to really "feel" like dressing up, putting on makeup, getting my hair looking really nice, and then putting that "smile" on, and not looking worn out are the ones that are so far and few between.

At times, I feel that is why maybe I find myself slipping back or shying away from taking that overnight trip away. I may feel wonderful while I am out and about, wherever, Casino, shopping, yard work or whatever, because I realize that more times than not, I will "pay" for that 1 or 2 great days.

A day, two, three, a week, weeks, months.... most of us would give a great deal that we had, if not everything we had just to have a "normal' day, week, month, or year. Without being ill, without needing surgery, without needing many medications, without pain, and time we can spend with family, friends, on a job, in our home, just to "feel well" for a brief and wishfully a "lifetime" of not being chronically ill, or in chronic pain. 

Alas, since yesterday was an "election day" of a "first" ever for this nation or the world for that matter, "FREEDOM" is what I and ALL that are ill wished for a day, that is perfect 'FREEDOM FROM THE GRIEF OF CHRONICALLY BEING ILL AND IN PAIN".

#HAWMC

WEGO Health Bloggers/Writer's Challenge 2016 - Day 7 - How I chose to start my Advocacy Work & How I felt when I made that decision

Day 7 - WEGO HEALTH Blogger/Writer's Challenge 2016

"How I Chose to become an "Advocate" & How I felt about that decision"

I had really already been a "voice" in many ways well before I was diagnosed with RA, Lupus and Sjogren's. Before those came into play, I suffered with Migraine's from the time I was 17 years old.

I was also wanting to be in the medical field almost all my life in some way. Early in life, my thoughts were on becoming a nurse. As time went by, I married, had my son, then a few years later, remarried, and had my daughter, the idea of going to school full time in order to become a nurse was almost impossible. I was mainly the "bread winner" of my home, and my paycheck really needed to be there in order to pay for the house, car, and for all that my children needed as they got older. 

I had a chance when the kids were around early teen years to go to Nursing School full time and it be completely paid for by the hospital I was working at, in the Business Office. I did pass #1 on the Exam to get in, but then it was the "money" issues, of me having my paycheck completely cut out for at least two years, that made me have to decline going to college full time. Although I took classes at night and got my Associate Degree in more of a business light, the medical field has always been in my "blood". 

I seemed to "absorb" all things "medical" in nature. After being formally "diagnosed" first with MCTD, then soon that changed into Lupus, RA, DDD, DJD, Raynaud's "Hyper-joint mobility", Sjogren's and that list grew on, I then "knew" first of all, the Heart Attack I had at 40 years old, had to have something to do with the RA and Lupus. Although when I was 40, I was the "picture of health" ate properly, exercised daily, watched every type of food I ate, was the exact weight I should be, yes, I had a heart attack. At the time the doctors said the huge amount of stress I was under had caused it, which I am sure played a role, but I was SURE back then, that my Migraines, joints issues, that had already caused me to have several major joint surgeries, plus other things in my health that just did not add up, yet not one doctor took me "seriously" for another 10 years or MORE, before I finally got the diagnosis of "autoimmune disorders". Thus at 50, I suffered another heart attack. 

Now, back to my advocacy work. I was already writing a book about my "health issues". The doctors that had been great, and those that treated me like I was some "air-headed, over anxious blonde" because as we have come to find out "Chronic Pain and Illness can often be UNSEEN by others in our lives - Invisible to those around us, even physicians". 

Back then women were also kind of considered "off the wall", depressed, anxious, stressed and that ALL of their "illnesses" were basically psychosomatic, rather than being looked upon as most men were. A man walks into the ER or doctor's office complaining and they are taken seriously. Back then and still it happens, woman can do the same, and we get the answer YOU need a "shrink"... this has changed for the better and does not happen as much, but back then most women were just "crazy", when they complained, especially of pain. 

So, when I became interested in finding out how I could get MY voice heard, other than my writing, I turned to Facebook to do some research. I also began doing searches on the different illnesses, diseases and syndromes, and came to find out there was an entire realm of "advocacy" places, where the PATIENT'S VOICE was CRUCIAL!

No longer was it just the professionals that were hailed upon for answers, but us, those that suffered with these diseases had a voice in groups, by jointing some of the organizations, and even going right up to Washington DC (which I had long said I wanted to stand at the White House Steps and TELL MY STORY) ... and I came to find out, that is exactly what patients were doing! That the Arthritis Foundation, WEGO Health, the Lupus Foundation, the IFAA, and so many other of the non-profits were "enlisting" us, everyday, regular patients to tell our stories, and move those that could help us by money for research, by giving people access to clinical trials, helping to get our voices to the experts, thus that is what I did.

I dove in head first, to a couple of organizations, and I was excited, thrilled, terrified, star-struck, and scared all at the same time! When I was able to attend the Arthritis Foundation's "Capitol Hill's Annual Summit" and DID GET TO tell my story to some of the Congressional men and women, I truly felt that I had accomplished a greatness. That is when I also wanted to tell everyone else, that they TOO, right from their home and computer, can also make their voices heard. They are important, and crucial to making the diseases stand out, where we can get answers, get proper diagnosis', get the care, medications and specialists we need in order to survive all of the horrid illnesses, we've had to endure for much too long.

#HAWMC

Day 6 - "Superpower Sunday?" #HAWMC - WEGO's Monthly 2016 Blog/Writers Challenge! What kind of "SUPERPOWER" would I have & How I would use it?

Superpower Sunday! WEGO Health - Day 6 of the Monthly Blog/Writer Challenge! 

What kind of "Superpower" would I have and how would I use it?

Great Question, and one I had to give thought to. If I was able to have some type of superpower, first of all, I would want it to be something that could help ALL who are chronically ill, in chronic pain, and especially in some realm where I could help "diagnose" what was wrong and have the ability to fix it, or possibly stop it before it even happened.

So, I guess I would want the ability to see "behind" as far as years, decades and so forth, plus be able to see ahead in the decades and years to come. In that sight, I would want the ability to "look" at someone, or touch someone and know immediately they were ill, before any symptoms really arose. Then I would want to be able to put together what their future and their past looks like, even forward to their grand kids and all of their relatives ahead, along with all of their years before they were born, and find if their were "issues medically" that they had no clue existed. 

I would want to be able to "see" within my mind's eye, what was coming "medically" in the future, and take that to what had been gathered in the past, such as Penicillin, or the place where the "gene" for a certain type of breast cancer was found, and put that data together to help stop severe medical problems we as humans have, and event some way to "stop" those events before they were even known to exist. I know this sounds like more than "one" superpower, but it is mainly having the ability to "see" ahead and "behind", to correlate that information so "chronic illnesses" such as Diabetes, Cancer, Lupus, Rheumatoid Arthritis, AIDS, "genetic" illnesses that begin in "utero" long before they can be "seen", and the diseases that are to come in the future, able to "halt" their progress well before they are ever in fruition to exist within humans. 

I basically would want to be a "super doctor, medical research expert" and "fix" what is wrong well before it happens, as well as "heal" those who have already been in the "grip" of some of our horrid illnesses that strike down so many thousands and thousands annually.

#HAWMC

#RABlog WEGO RA Blog Week - 1st Post September 21st,2015 - A Morning or Day in the Life of Ra and Me, Rhia

 Just as anyone on a "normal" Sunday morning, that goes to a worship service, or attends some type of Church, Sunday School Class, and Fellowships with those there, I begin at the moment my eyes pop open.

At times, even just before really being wide awake, the pain begins; along with the stiffness in my fingers, wrists, hands, ankles, toes, and now my lower lumbar/sacral spine. My first "event" is to get my green tea that is in the refrigerator out, and take my pain medications, along with a muscle relaxer, Meclazine to settle my stomach from some of the "dizziness" I often have, due to double vision, (doctors think from the RA/Lupus), and the feelings as if "I" am moving. Some may call it a form of dystonia. It gives me vertigo, and without my daily medication, I would look and feel as if I had not "control" over my body moving, swaying, and sometimes if I am sitting, I almost "gyrate" from the waist up.

I have a couple of other medications I also take with those, and those are just a few of the many prescriptions and over the counter medications I take daily. My mouth is just as dry as the "Sahara Desert" as the saying goes, from the Sjogren's, which usually can come in tandem with RA, Lupus and so forth. So, I try to drink some iced green tea, and get myself awake enough to decide what to wear and so on.

I used to be able to get dressed to go just about anywhere in an hour or less. Unless it was something extremely dressy and formal, an hour was more than plenty of time to get ready.

Now I must plan to take at the very least over an hour and that is not counting the shower I had the night before. I used to take a shower the morning of what I was doing. Now, I usually have to shower that night before, or by the time I take a shower, dry my hair, do my makeup, get my clothes on, jewelry on, and have everything done, I would be too exhausted to go! Kind of like the "spoon theory". I have so many I use for a day, and just showering, dressing, doing makeup. hair, and jewelry/accessories, would use up over half the spoons for the day. I have had to learn to get as much ready the evening before as possible, so I am not completely worn out by the time I am prepared to go.

I usually take a short walk outside and around my home after I get up. It is usually quiet time, and I just take in the sounds of "nature" all around. Then it is in to take ALL of the medications (not counting the ones I take almost before my feet hit the floor). Then I have my two pups, and I give them their medication at the same time. From there, depending on the day of the week, it may mean collecting all of the trash cans, getting them emptied and out to the curb for the trash truck to pick up. Or laundry to do, depending on how much I have, may need to be done. There maybe errands to run for myself or my Mom, picking up medications, going to the market, or any number of things that may come up in a day that I need to take care of.

I feel like I spend more time either making doctor appointments, going to doctor appointments, getting prescriptions refilled, picking up medications... and life some days seems to evolve around something "medical" in nature.

Even down to what I may decide to have for my meals that day. Cereal usually follows my morning medications, especially during the hot months of the year, and usually warm cereals, oatmeal, or cream of wheat are my breakfast picks in the winter. I on occasion on the weekends will prepare a "big breakfast"... like eggs, biscuits, turkey sausage or bacon, and even grits, hash brown potatoes, or cream gravy and at times I make pancakes. But, since for the most part my stomach does not "hold" very much food at a time, I stick with breakfast less filling.

When I stop to truly think about a moment of time in my life, whether a few hours, a day, week, month and so forth, honestly something about an illness or disease is never left out of the equation. I have to always consider how I "may feel" physically before making any definite plans. Even then, it could be I wake up on that day, and must either postpone or cancel something, because I am not feeling well. I feel as if my "body" dictates what I can or can't do any moment of my life. Everything seems to evolve around how I am "feeling".

Chronic pain and/or chronic Illnesses, all too often "rule over" and "take over" your life. They challenge you, they can come on and knock you to your knees when you least expect it. 

Each day, each moment, each breath that passes can mean a fine line between feeling "well" and being very critically ill.

#RABlog

#RABlog

WEGO Announces - The 1ST Annual RA Blog Week coming up the week of September 21 - thru September 27!

WEGO Health and the very 1st Annual RA Blog Week!

To find out more about how to participate and have your blog included see the URL:

http://www.radiabetes.com/leading-prompts-for-rablog-week-as-of-august-18-2015/

Here is more information about RA Blog Week!

http://www.radiabetes.com/home/rablog-week-white-paper/

This is such an honor! A great way to help others, and find out more about others also!!!!

About #RABlog Week

About #RABlog Week

WEGO - and How they have made OUR Voices Heard!

This is definitely worth watching!!! Way to go ALL and thank you WEGO HEALTH!

https://www.youtube.com/watch?v=zyaGZdsJaBI&feature=youtu.be

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!!!

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.