Lots of thoughts and prayers needed now...

I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.

When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...

Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...

As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.


We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????

None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.


So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...

I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....

Osteoporosis And My "Severe" Range Numbers...

I haven't been able to sit and write much. I was gone for a couple of days for a "girls get away" trip with my Mom. We went to OK, to the Winstar and just had an incredible time!

But, with the issues I've had with my very lower spine and hips, the sitting really did me in. I've spent the last two days trying to recuperate, and I am already having massive issues with severe pain, burning, even all the way down into my heels at times. A CT scan shows some issues at L-5/S-1 & 2. But, it is really not able to tell us just how badly it is. I suspect a probable compression fracture or maybe 2 due to the severity of my osteoporosis. It was something I never really thought much about until I had my first bone scan about 3 years ago. I was totally blown away by finding out I had not just the disease, but SEVERE osteoporosis.

I began doing research to find out, due to the RA, Lupus, Prednisone for the illnesses, my tiny bone structure, and several other things all contribute to my having this disease. My hips are totally with it, as well as my "femoral neck" and my lower lumber spine. Thus I feel that is where the compression fracture or fractures could be. Due to having a internal pain pump I can't have an MRI. But, we already know, I have had more than one time of having a "scan", then going on with surgery only to find out the surgery really showed the severity of my problems. My joints are just being destroyed.

Anyway, I had not wrote but a bit about it, so I decided to at least post this, along with this URL:

http://en.wikipedia.org/wiki/Osteoporosis

And I will continue later... ;)

Just How Much Autoimmune Illnesses Impact Our Daily Lives - from the Quality of Living to Our Jobs, families, and More

http://www.medicalnewstoday.com/releases/294416.php

Below are just SOME of the Stats About how RA Effects Lives... You can see more at:

http://rheumatoidarthritis.net/graphics/in-america-studies/ra-in-america-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...

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.....

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.


http://nationalpainreport.com/the-prescription-drug-abuse-caucus-what-does-it-mean-to-chronic-pain-sufferers-8826244.html

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

http://curec.lk/1R7YyFg

 

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

http://curec.lk/1INdS7i

High Cholesterol and Heart Disease

http://curec.lk/1csLxa5

Patients With Mild to Moderate Asthma

http://curec.lk/1DHGmJC

 

 

 

 

Severe Asthma

http://curec.lk/1yjyQmA

 

 

 

 

 

 Type II Diabetes

http://curec.lk/1EaSCH3

 

 

 

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.  

http://curec.lk/1Gb4toG

 

 

 

 

 

Cure Click

PROSTATE CANCER TRIAL AVAILABLE SEEKING NEW PARTICIPANTS

Did you know that prostate cancer is the second most frequently diagnosed cancer globally? And a significant proportion of patients who are treated have their prostate cancer come back or spread. There is a clinical study available, seeking participants who have Prostate Cancer in order to assess if the study medicine helps prevent or slows your cancer from spreading to other parts of your body.
More about the study:

• The study drug (Investigational drug) is administered by Tablets, Pills, or Capsules.
• At least 400 people have already taken this drug in clinical trials
• There will be 1200 participants in this trial, at 44 sites around the world

If you are interested, the full study details and eligibility criteria are listed here.
Eligibility Criteria:
Participants must:

• be male
• at least 18 years old
• have been diagnosed with prostate cancer

Participants must not:

• have prostate cancer that has spread to the bone
• be currently participating in any other clinical trial

If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
Learn why I’m talking about Clinical Trials

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:

http://en.wikipedia.org/wiki/Memorial_Day

http://www.usmemorialday.org/?page_id=2


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..

http://www.nationalpolkafestival.com/

https://www.facebook.com/pages/National-Polka-Festival/72290758415

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...

http://texasmotorplex.com/


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....

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!!!