Friday, May 29, 2015

Wondering If I "Offended" anyone? Living a Life of never knowing what is around the corner, one day to the next.

As of lately, between thunderstorms, rain that seems to be never ending, concerns for loved ones and others I know that could be caught in these rushing waters somewhere, and all of the things I've seemed to either "get behind" on, or feel as if I am moving again, too slowly.

I know, another very long, drawn out sentence to start a post. As usual. from brain fog, to wondering what comes next, I am not sure what to us. I've awakened a couple of nights in a row, feeling as if I was being suffocated. Some of it, I'm sure just upset over all of the tremendous amount of rain, thunderstorms, water, and problems that go along with all of it.

I've got to make a couple of decisions in regard to my own health, that are not easy to make. As I've said now for weeks, Mom and I have been so looking forward to going for a overnight stay, a girls day and night out, away from all of the drama that continues to surround my life.

After going for months, and not hearing from our lawyer, about three days ago, finally after I had made a step in their direction, we get an email from an "assistant attorney" at our lawyer's office. She had read my email, and saw that I was in a bit of a fluster, not hearing anything from them for months, she comes back with her own email about some paperwork they need. There are some things that need to be clarified from information that a gentleman came down here and got from Jim. I believe it was more of a testing, of just how badly his memory, and that had been still trying to piece that information together. They also want names of doctors and addresses of course of any doctors Jim has seen over the past several months, since he gave them everything from the hospital.

We tend to think that "maybe", and that is a huge maybe, something may try to move forward now. Since "our attorney" is asking for information they may have some idea about the possibility of this not going on to a "jury and trial". I would "assume" that the other party involved in all of this would not want to "air" all of the details out in the "Dallas" area. But, we of course don't have a clue, as to what type of "witnesses" that we have "been told" they gotten depositions from. I cannot fathom, many "witnesses" to this at all. Only those involved in the wreck, being that it was on I-45, a very busy portion at that coming into the Dallas City Limits. and was no real "houses" to amount to anything in that area, If they do or did have a "look" it couldn't have been very much. That entire area, is more or less not filled with any real residential areas, with the exception, of the possibility of some type of apartments, and they would be kind of difficult to get a very good look at something on that stretch of highway, that happened that rapidly, to be able to say one way or the other what you "may have seen".... plus there as far as we know were no people that "stopped" and asked to help. With the accident as bad as it was, if someone had really seen what took place, I can't imagine them not stopping at the very least to not try and get 911 there, and even possibly get Jim out of that car. Of course He thought there was, but later we found out, what he thought I believe was the actual fire crew that came in and had to literally cut him out of the car. As far as we know there was not anyone that stopped to help. So, "onlookers" (I was not there so I can't say with certainty) seems kind of doubtful at this point.

I've been through that area now on several occasions driving back and forth to doctors, and unless it is one particular "house" or more like an apartment building, there is nothing "facing" the highway enough to see what really went on..

None the less, we also don't know whom it telling what, and whom knows anything, and maybe there is "not" a "witness"... but the other parties of course are going to "stir" the soup of a mess in any way they can in order to make the situation a bit deeper into a pile of crap honestly.

I am going to "end" this here. It is already after 2:30 on Friday afternoon. I've been so busy these past several days, and still am having to deal with whether to attempt Dallas and go to the Casino Sunday.. OR wait until my doctors appointment that is Wednesday afternoon, and we would be about an hour and 20 minutes away from the Casino then. We could even stay Wed. night and Thursday night... if we did that... the weather "supposedly" is going to be out of the woods as far as thunderstorms and all that has been going on. I have not packed yet, and I should have went to town today, but I don't want to attempt to wash the car until tomorrow... when hopefully it won't be as "muddy" as today. I can tell I am tired... my eyes are seeing "double vision" even with my glasses on as I type. So, I know I am just exhausted.... anyway, I think I am off to the sofa for now and give thought to what I may want to do about all of this...

Thursday, May 28, 2015

When it finally "dawns on you" why you seem so totally living in "chaos" even above the drama of Chronic Pain and Chronic Illnesses

I have spent moments, hours, days, weeks, even I am sure YEARS trying to figure out exactly "why" my life seems to be in a "chaotic" whirlwind almost daily.

Yes, having autoimmune and/or any type of "chronic illnesses" along with "chronic pain" puts your life in turmoil more often it seems than not.

Yet, that still does not explain why, with only 2 adults, 2 pups, in a tiny two bedroom, barely over a 1,000 sq foot home, and a back and front lawn that are definitely average in size, along with a "back forty" a small bit of land that up until this fall had the neighbors sheep and goats on it, so we never had to be concerned on it. Why it seems that EVERY DAY of my life I look around, and I am constantly dusting, vacuuming, mopping, sweeping, picking up things, doing laundry, taking out trash, scrubbing tub and toilet. Yet both inside and out, I feel like it appears that this house is dirty, and it is just falling down around me every day a bit more.

When I bought it, I put a LOT of money into it, there was still SO MUCH "restoration" that needed to be done, yet the money ran out. So, even though there was at least 10,000.00 or more put into it, for painting, redoing floors, carpets, furniture, redoing plumbing, a lot of the electrical rewiring, lots of new plumbing, a brand new shower/tub, a new toliet, taking in a wall, knocking one out to have a bit of closet space and to make the bathroom larger. Yet, when it came to redoing flooring in the bath, kitchen, doing the finishing work i the laundry room, a carport had to be put up, and now the list is still endless.

We had some storm windows put in, and had a great deal of insulation put in the walls and attic. Yet, one bedroom did not get the new windows, and the windows are so old, the glass brittle, they lack most of the correct Pins and "glazing" that should be around them. That entire room has really never had been redone, so it needs paint, the windows repaired, a new ceiling fan, carpeting laid, and along with now the outside of the house needs a complete paint job, and some rotten board repaired.

So, I see one of my "mistakes" was not considering just how much MORE I needed in finances to really PUT this home back to its original state. I lacked about 5,000.00 back then, and now with other things going on, it is more like 10,000.00  more that needs to be put in... a new roof, the ceiling in many of the rooms really need to be either repainted or redone. The floors in the kitchen, bath and laundry room laid in. The walls that are in the bath need to be some still put in, and/or "mudded" and textured for paint. So, I should have known that without ALL of those funds, trying to "make" this house "look" neat and clean is very difficult, if you still have "portions" that are not yet up.

So, I look around, and even though SO MUCH work was done, and ALL for the most part myself and my husband did it all. From redoing hardwood flooring to painting, texturing, putting in a larger shower/tub, all of the plumbing, still the house no matter HOW MUCH I clean it, to me it looks dirty. I can dust, mop,sweep, do laundry, and almost every day it could be done again. Nothing ever looks "clean". Even though I KNOW it is, when it is "old" stained, and needs replacing, it just never appears to be clean.

Of course, then there were a stove/oven, the refrigerator, the washer and dryer, bed, furniture for the living room, and the list of all of those things, from the "renovation" work, to all of the other items needed to run a home, lawn mower, weedeater, tools... we had to buy a huge array of tools, saws, screwdrivers, wrenches, tree trimmers, you name it, of course if you do lawn work, and work around your home, you know just how many tools that can take. Blinds, curtains, sheets, towels... yes, we had "some" of these after being together for a pretty good length of time, but even those were beginning to show their own signs of "wear and tear".

So, then come along, and I became "chronically ill" - with autoimmune illnesses, that led into many surgeries, doctors, tests, you name it, I went through it. It seemed endless. Then, many of the things I could do, no longer was I able to do, when it came to the DIY around the house. I had both knees replaced, a shoulder replaced, surgeries on other joints, my neck had to have surgery, then I had "double hernia" surgery, not that long ago... thus me being able to even, "mow", do things in the yard as I once did, many things in the house, either I cannot do them anymore, or it takes me 5 TIMES as long as it used to.

My energy level is constantly up and down. The fatigue at times is just horrid. The brain fog, now has "captured" my mind so much, that even trying to write some days seems like it might be impossible.

So, now after being in this home, that we loved, we wanted, we wanted something we could "FIX UP" ourselves... yet, now it needs a new roof, we need gravel under the carport, windows finished in that back room, carpet laid in there, the house needs a painting all over... and again the list is endless .... and again it seems no matter how much I clean, how much I sweep, it seems nothing is ever "finished" or clean.

Texas is known for its "dust" that seems to come from no where. But, there is a constant battle with a grey dust that seems to settle daily on everything. As I said in the beginning, it just seems endless.\

What makes it even worse, I would much rather be here, at the computer, writing my book, so I can get it published. Yet, that always seems to be the "last" thing on the bottom of an endless to do list. So, by the time I reach down and pull up more things to be done, I am too worn out, physically, mentally and emotionally to really put myself into the writing as I want to.

So, now I sit here, daily, wanting so badly for things to just STOP for a few days, stay clean, not have endless errands to run, or things to do like shopping, mail, laundry, cooking, mopping, paying bills... all of that could just be put on hold for a few weeks so I can have some quality time to write...

Right now, it is almost 1 PM. I am on "empty" as far as energy, with sheets to be put back on the bed, and other clothes to be hung up or put away. I need a shower, and I'm drenched in sweat from the humidity. I have already swept, done laundry, mopped, dusted, including under the bed, behind it, and so on, it id trash day and after a holiday and a massive amount of bad weather I had 3 can FULL of not just trash, but limbs, and 4 other huge limbs too large to cut up. In between, I've done some things on line, but I am worn out from these past few weeks of energy.... and it seems there is never a break. I began trying to work on the inside windows in the back spare room. Well, that is going to take time to sand down, fill in so many places with wood putty and then get them ready to paint. After that, they have to be fixed from the outside with the pins and glazing which is very time consuming. I have a total of 5 windows, all of which need that work on them. I actually still have a broken windows from the hail storm last year. I had hail break a window when I was ill with pneumonia, so it is taped up and sealed up the best I can until I can get it measured and have someone to help me put it in. I can, but I need another person to hold it in place, as I can't hold it and pin it at the same time..

So, hind sight is "20/20".... there are so many things I look back on now, and so wished I would have done differently. I can't tell it all here in one post, but from some of my "relationships", to homes, to where I am living in the nation, to health problems, jobs... and TIME to write my book! That is probably THE MOST important thing to me, is to FINISH THAT BOOK AND GET IT PUBLISHED! But, how does ONE person do it all? And then have enough "time and energy" to feel like doing it all, and then spending time on my book daily.

By the time I've been up since sometimes 5AM, and 4 PM rolls around, I am totally exhausted. I wished I had an easy answer... I wished I had any answer.....

Wednesday, May 27, 2015

Prescription Pain Medications and Legitimate Patients Once Again Could face issues... we MUST stand up for OUR RIGHTS!

Again, as you can see, those of us who ARE chronic pain patients and we DO take our Medications PROPERLY and we keep them SAFE, LOCKED UP, and take them ONLY AS DIRECTED, following all of the "pain doctors" orders to a "t" so we do NOT abuse our medications, nor are we the ones using them for "recreational" use, or to do something illegal with them. SO, the "FEW" the DO NOT use them correctly, OR they sell them, or overtake them, or get them from numerous doctors and so on, cause US the very people the medications are for, to SUFFER!!! It is already DIFFICULT ENOUGH to get into a GOOD pain doctor that DOES prescribe pain medications. Then when you do, never would you try and do anything to jeopardize that "contract" between you and your physician!!!! WE MUST stand UP for OURSELVES!!! Or once again, we will be in a place that we may have suffer needlessly due to the few that do wrong. This has to be talked about, taken seriously, and we are the ones, the PATIENTS that must fight for our rights as being able to do "our lives like I do my own.... So, each of you, that are in the same situation, I would love to hear from you, and see what you have to say about this ever changing issue... it sucks that a few, can cause harm to so many.

Tuesday, May 26, 2015

New Clinical Trials - Cure Click & My Relationship to all of this..

Currently, there are 6 Clinical Trials going at Cure Click

I wanted to give you a look at all 6 of them at once here in my blog, along with some facts, figures, and how I am involved with these. Giving you MORE information, I hope to help you understand YOU or someone else you MAY KNOW, with one of these illnesses may qualify to get possible involvement in a Clinical Trial. I realized a couple of years ago, that "Clinical Trials" in themselves can be sometimes a bit "complicated" to read through, understand, and even try to find out where they are and how you may qualify. After being asked to be a part of "Cure Click", I was thrilled to see that this is sort of a whole new way to possibly get into a clinical trial, and in ways that can make the "red tape" less and getting the possible help out of a clinical trial you may be seeking. So, here are links to the 6 trials available (and watch for more on the way shortly) that are active now. Then below them will be some information that will help you understand the trials, how they work, what my role in this is, and please always feel free to ask me if you need additional information about any of these, or about anything you might need to know about clinical trials in general.

Prostate Cancer


People with Previously Treated Stage IV Non-Small Cell Lung Cancer

High Cholesterol and Heart Disease

Patients With Mild to Moderate Asthma    

Severe Asthma    


 Type II Diabetes   

As you can see there is a wide array of Clinical Trials Available at this time, and more to come shortly. I had said that there are many things about Cure Click I like, and between being a bit easier to understand and go through to find out if you qualify, along with a way to ask questions to myself, or through Cure click, it really does make getting into a Clinical Trial seem simpler and less red tape.

I hope if you or someone you know would like to find out if you can qualify, feel free to click any of the links above, or you can post here, or send me a message and let me know what else you might need to know. If I can be of help then that is why I am doing this, is to HELP Others!

And here is my own involvement in Cure Click plus other information you may want to know.






Monday, May 25, 2015


Cure Click

Saturday, May 23, 2015

IN "Rememberance" of those who have given their lives "Memorial Day", National Polka Festival and the Texas Motorplex!

Most of us just "live" for the "Official Start" of Summer! We tend to view "Memorial Day" as the holiday to begin warm weather, lots of outings, camping, trips to the lake, and plenty of great cooking, from barbeque, to potato salad, deviled eggs, chips, dip, you name it, all of that "summer" food! Oh, and of course, never forget a bit a beer splashed in there also.

We also for the most part know why we are in such celebration of this holiday. It is to given remembrance to ALL of our fallen men and women throughout history, that were out their, and risked life and limb to keep our country free and safe. I wanted to share a bit of history about it all, so I found a couple of links to share.

I also made my visit to my Dad's grave, put new flowers on it, and gosh forgot the flag. If this weather will give me a break over the next couple of days, I will make sure I get a flag out there also.

I didn't know about the "poppies" and how they play a role in all of this. So, I found that part interesting.

Here are the links:

So, as we celebrate our holiday weekend in all kinds of ways, I want to say a very Happy and very Safe Memorial Day to All. I realize for many of us, the weather may "dampen" our celebration. For us here in the Ennis, area, just below Dallas, we are supposed to also be celebrating National Polka Festival. For those of you that don't know, Ennis has an amazing history of many people here that are of Czech background. Many are either full blood, or at least half Czech. We have many that their close relatives may have come over from the country, like my Great Grandparents did, many years ago. So, it is a huge National Celebration, and our town of about 8,000 will be more like 20,000 this weekend. The weather here is very bleak, gray and also rainy. So, that does put a real "damper" on the parade and all of the outside activities that start off this morning and go until Sunday evening. We have several "Czech" Halls here. They all of Polka bands, and in fact the Bellamy Brothers are here to be the opening band at the Sokol Hall this year. There is no telling how much barbeque, Klobase', Kolaches, Saurkraut and everything else that goes along with it will be consumed, as well as a LOAD of beer! They will be dancing the Polka all weekend long and even have a dance here in one of our streets, usually on one that still has the original brick that was first laid here in town for our streets. I am putting this link up for those of you that would like to know more about the event:

Here you go, this is the main website that can tell you all about it, the history, and see the beautiful costumes. I had several when I was younger. I am "Half Czech". My Mom is full blood and it was her Grandparents that came over on a boat there at the statue of Liberty many, many years ago..

So, as you can see, this "small town" has a great deal of "life" in it. Also, for any that don't know we also have what used to be the only "all-concrete" drag racing facility here. Which is the Texas Motorplex!!!! This town used to host two of the National events annually. One used to be on this weekend also, the spring nationals. I believe it probably just got too large too handle all of the events on one weekend. So, Ennis hosts the Fall Nationals in September I believe. When advertised they say in "Dallas", but NO it is right here in Ennis TX...

Believe it or not I RACED down that drag strip several years back!!! We at that time did the Friday races in the spring and summer months. I spent a great deal of time out there when I was not "chronically ill" ... and loved the racing... nothing like going down a track, in a car, the quarter mile, at well over 120 MPH, for a "novice" like myself... So, that is another fact about my town.I did the "bracket racing" back then....

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


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:

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:


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).

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. 



"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.

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 site or here are some "sample" twitter posts:


  • ~300,000 babies, kids & teens have #arthritis or a rheumatic condition? #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. 



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:…/6827783956463713793
You can learn more about WAAD15 at!
*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 YOU can win prizes too! You can learn all about WAAD15 and register to play along at

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...

The Arthritis Foundation and More of its Goals for 2015

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.

Please go to:

                      and be a "Champion of YES!"

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
We are all driven by a passion and commitment to work that goes beyond the call of duty.
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.
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.
Together, in the face of darkness, we possess an optimistic outlook and winning spirit that courageously leads us.
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.