Cure Click WINS SILVER in a very Prestigous Awards Ceremony!

Cure Click is really deserving of this. They are really working hard to get people into clinical trials, and getting those like myself, to spread the word on these trials so more people get the information. 

CureClick Wins Silver at the MM&M Awards for Best Use of Social Media of 2016

 

 

http://community.cureclick.com/cureclick-wins-silver-mmm-awards-best-use-social-media-2016/#comment-309

Fearful that something is very WRONG & not sure what I want t do honestly....

First of all, I want to see who reads this. Some of those if they do, should "respond" to me quickly.

IF they DO NOT, then I know they lie to me about "reading" my blog posts and FB posts etc.


I've lost something like 24 POUNDS for no "real reason" over the past about 8 months. I "chalked" it up to stress of all I went through with my Mom, the Dementia, then the grief and everything that is STILL going on even after her passing away.

Funny how even "family" can be so damned "selfish" once they "think" they are getting a little bit of the "green stuff"... or if they are NOT, and so forth.

Anyway, I've been having severe "night sweats", I mean COLD, shivering, soaking wet to the bone, and all onto my sheets, my blanket and so forth. Those have been going on now for about 2 years off and on... but lately they are much worse.

Then I KNOW I am anemic, and have been, I take B-12 injections monthly BUT my RBC IS not BETTER but WORSE, anytime I have labs drawn.

Then there is the bone weary fatigue. I struggle with severe fatigue, and have always felt it was the Lupus, RA and so forth....

I cannot sleep, the lymph nodes in my neck stay swollen and the Left one under my ear is like a rock, and sore all the time.

THEN, I developed this one "lump" about the size of a LARGE marble on my L. Butt cheek about 6 months ago... rather than go away, now it appears like it is "sunken in" around it, with a bluish tint, almost looking bruised YET it is NOT bruising... I've had NO trauma there and now this past week up and down my outside right thigh, I began to "feel" the little lumps, about 4 or 5 of them...

I've looked and researched, and although we know often these things may mean nothing, YET I fear I may have "Non-Hodgkins" Lymphoma.

The "symptoms fit"... and with my other issues like Lupus, RA, Sjogren's, Raynaud's and so forth, my chances are much greater of having something such as this... I shall say no more for now... and see if anyone reads this....

#PrayforFlorida - Hope people heed the warnings and get out while they can.. May they be blessed by all thoughts and prayers....

#prayforflorida

MAY ALL BE SAFE OVER THE NEXT DAYS TO COME... HOMES, PROPERTY, CARS, ALL CAN BE REPLACED, BUT LIVES CANNOT....

I PRAY PEOPLE HEED THE WARNINGS AND GET OUT, OR TO A SAFE SHELTER....

OUR HEARTS AND PRAYERS ARE WITH EACH OF YOU UP AND DOWN THE EAST COAST IN THE WAY OF THIS HORRENDOUS HURRICANE!

Thousands Without Power in Florida as Hurricane Matthew Begins Its Assault

https://weather.com/news/news/hurricane-matthew-florida 

 

 

 

 

 

 

 

 

 

Surviving - Being a Caretaker even after the person passes away, dealing and coping with loss & still "feeling" someone still having a hold on you from the "grave" - Decisions when you are chronically ill, in pain & trying to make everyone "happy"

I've been trying to "get over" what all has been left behind for me to deal with since June 9th, 2016 - Actually more like the start from about 9 or so years ago, when I came back to TX, to help my Mom.

Most of you that follow me, know I was an only child, my Dad passed away in 2005, and by December 2005, I moved back here from Seattle, to help my Mom. I've talked about due to Dad's upbringing in the "Depression" back in the 20's and 30's Dad's "way" of handling life was much different than those who were younger. Not that he had "bad ideas" but there were many things he could never accept, that were just a part of life, as it evolved and changed.

We each know life does not remain standing still. Each day, there is something new, whether it be something horrible like the "wars" overseas, and innocent lives, even children suffering for no reason but greed from others who want to "rule" over people,

There are also many good things that almost change daily, from cell phones, to technology, jobs, the way our country is ran, and all types of good things that can change within a breath's space.

My life, as well as many of yours have changed, evolved, grown, fallen, gotten up, and tried to march on, even through the pain and suffering, the embarrassmentand the good, bad and indifferent of this world.

Speaking of, our nation and world are in such a torment, chaos and it's hard to fathom other humans can do some of the things they do to those like them, humans. Each day the news seems to worsen over not just all of the overseas fighting, hatred, war, and such, but right here in our nation, each evening, I watch almost in horror of what act of violence has happened that day.

I was left to "take care of" all of Mom's affairs, of course Executrix of her Will/Estate, as you can call it.

Mom had made some really "bad" choices when she was alive. She did some things that as much as I had tried to help, explain, and give her insight along with her financial advisor at the time, to get her to understand, some of what she was trying to choose, could cause family issues someday after she was no longer here.

I never "told" her what to do or not do, but helped her, by explaining why I felt one way or the other, as well as her advisor also helped to guide her into not causing family grief, anymore than we would already have after she had passed away.

I had been here over 10 years, and for most of that time, I helped her with just about  everything, from bills, to putting gas in her car, to helping her and doing her taxes, explaining things she did not understand, you name it, I did it... I am an only child, and I felt it was my responsibility to help her in ALL ways, that I possibly could. I can hope that I did for the most part a decent job at it.

Although a couple of things fell through the cracks, and as I said years ago, NOW, we have a family "uproar".... that although one member "seems" to not be hurt by what has taken place I feel badly that it has, and even more upset that the other 3rd party is NOT helping, and is acting like a damned toddler, rather than a grown up adult.


I am going to go ahead and publish this although it is not finished... I will finish it and post the rest very soon...

Just a look at what I've been working on, even with a right hand so swollen I can barely move my fingers - NEVER let ANY DISEASE make YOU think YOU CANT - YOU CAN!!! (or most of the time you can)

WELL!!! The Living Room is almost done. Of course the ceiling is not painted, and I still have to do the floor, but I got it all painted, and the chair railings all up and finished this afternoon! I am quite proud of my work, although I can see the “mistakes” hopefully no one else will notice. Then the kitchen wall, and I got it almost finished and have the chair railing up in there. Now the “red” blob…

DO NOT make fun of me yet… LOL, When I finish, I hope it will turn out half as well as the hallway did in my house here… I found the “glitter” to go into the gold paint, so I will paint the upper half red, and white on the bottom, same as the others, but I am going to “sponge”, use newspaper, paper towels, possibly rag roll the gold over the red. If it turns out like I can picture it in my mind, along with my red and yellow curtains, plus my bedspread that has all of those colors mixed in,


 I think it will turn out awesome… if not I guess I will be repainting the bedroom! LOL!! That is the ONE thing I figured out after all of my years of DIY at homes, whether painting, fixing, repairing or whatever, if you feel you do not like it, like coloring your hair, just do it over another way! It can be “fixed” ….. anyway, I am exhausted and my right hand is so swollen you can barely see my knuckles.. and that “sawing” was all done by ME, by HAND with a “miter saw” by the way… no electric saw of any kind, it cut all of those railing pieces by hand…. :)

I know I shall "suffer" the pain and swelling, and all that comes with undertaking a project when you are in chronic pain, and living with several chronic illnesses.., BUT AT LEAST "trying" to partially do something you love, whatever that is, is a WIN WIN even if you Can't FINISH it, you are still a winner because you TRIED! We "try" to never allow chronic pain and illnesses to ruin our "want to's" and joys in life...although at times they take over, when we have a fighting chance, we FIGHT!!!!

My Emotions Run Amok Over the past days.....

Now as if I am not covered up with enough to handle, I get a "certified letter" while over at House #2 yesterday. I've got to now "change" things because of course they County knows Mom passed away, and they want to know the "status" of the property. If not a homestead, that means greater taxes come January. Well, it won't effect anyone as badly this year, because even like income taxes, Mom was here for half the year. So, most of that will fall on her 1040. As if there is much made in interest over the past at least 8 years... she did not even make enough in interest to owe any taxes now since about 2006, really earlier. She was sending in "quarterly" payments to the IRS because Dad did. But, that was before all of the "crash" of the stock markets, and the money was no longer making 11 PERCENT interest back then! Yes I said 11%!!!! 

We will never in our lifetime see interest made like that again. And with many not even getting a retirement, many having to use their IRA's because of job loss, etc... that is why all who are going to turn retirement age now and in the future, cannot live off of what their monthly SS checks are... 

The ONLY way you can is to NOT OWE anything, keep your utilities to a MINIMUM, and pray nothing HUGE happens that you need emergency funds, because you are out of luck in many situations when it comes to trying to live off of what you put in all your life and it was matched by the employers, but believe me, even if you worked steady for 25, 30, 45 or more years, it is STILL not enough to really live off of... That is why my Mom NEVER bought much of anything, she never had any loans, she owed nothing on the house, the car, all of everything but her daily living expenses, and then house insurance, taxes on the house, and insurance on the car... which all are enough to make you feel as if they are "bleeding" it out of you... and then I believe even though you may have paid in for 45 years, their is a "ceiling" the the monthly amount of SS you get... 

no matter what you have paid in all those years, you still only get so much per month back. I am not one to get into politics online or with anyone, religion and politics are just two subjects, that can cause harsh feelings quickly, but if we are "Trumped" we are "SOL" in other words "Scat out of luck".... 

I realize many probably disagree with me, but my feelings are with the way that person "talks" and how they put down everyone, we would be completely blown off this Earth in a year, with his tone, the way he talks about others, and his entire attitude... I could run the country better HAHAHAHA ... which that is truly a joke, but at least I would not be out calling people names, and embarassing the entire nation with his put downs, his racial remarks, his NO KNOWLEDGE of any of our Allies or Enemies... which Allies are fewer by the day... as I've said I am moving to a deserted island somewhere if he is elected.... anyway, Just like my ex-Father in law would have said long years ago. "In My Opinion"..... never forget him saying that.... thus so "IMHP" we are screwed and not good tattooed if that person is supposed to run our nation...

Information on FM and How the Weather Effects IT - Just like those of us with any type of joint/muscle issues, Lupus, RA, Osteoarthritis & So Much More

 http://fibromapp.com/fibromyalgia-chronic-pain-the-weather-connection/

Also things We Hope Others that Know Us have Learn about Chronic Pain during Chronic Pain Awareness Month

http://healthprecious.co/17-things-people-with-chronic-pain-want-you-to-learn-during-pain-awareness-month/

And The Staggering Toll The Chronic Pain Takes on So Many!

 https://www.yahoo.com/beauty/survey-findings-highlight-the-staggering-toll-of-128057394882.html

We continue to be a very LONG way from resolving the MANY issues and illnesses that result in so often severe and many times Daily CHRONIC PAIN! Those that have never experienced this type of ailment have no clue as to how it effects every aspect of your life. We are not "insane or crazy"... and we do not have "chronic pain" to get attention. We don't use it as an "excuse" to get out of work, family gatherings, going out or helping with things. We are truly in such pain, that often times just a loud noise can make us shutter in such terrible pain. Whether it be headaches, bone and joint pain, nerve pain of so many types, pain from the back, from illnesses such as FM, Lupus, RA, Osteoarthritis, and lately I have learned that even DEMENTIA can cause "chronic pain". So the next time you see someone that appears to be hurting, or they park in a "handicapped" spot with a placard, and they "seem" to "look okay" - NEVER take that for granted... many of us try to "hide" our pain in public, we don't want anyone to feel sorry for us, or look at us oddly, or start asking lots of questions. So, we find ways to either "hide" that pain for a bit, or we just don't go out and stay behind closed doors until it is where we can make it out without showing the pain.

Brand New Ideas to HELP Chronice Pain , as well as ALL types of Medical Conditions take the Survey, Help Fight these diseases & may offer Clinical Trials

http://curec.lk/2d5BD2x

Use a wearable fitness tracker? Take a survey for a chance to win a $200 Amazon gift card. pic.twitter.com/X3dS4K01ds http://curec.lk/2d5BD2x 

Tufts University Surveys

CureClick has partnered up with Tufts University School of Medicine to help bring patient voices to medical research. These surveys will help researchers better understand the needs of the patient community and figure out ways to better aid advocates.

From Running, to walking, to running, and trying to get my body to keep up and the Lupus and RA to "behave" - Remodeling, Houses, Contractors, and Coping

Well I did have one contractor come over yesterday afternoon, and I got tickled - he was impressed how much work I have already done! I told him I would continue to do what I can, what my body and hands allow me to, and that way when they get where they can come, they can do the larger things like the railings, and the fence... and later side that garage and put a new door on it. I am in a mood I guess I cannot describe.... I have not really been here very much, it seems all I do is run, run and run... I had to take a huge amount of shred stuff to Waxahachie yesterday, so I drove the Elantra to get those miles on it so the computer will register correctly for the inspection. Then I went into Lowe's, bought a couple of "toggle" switches, I really want to use those in that house also... and then some plates for the outlets, again several need the updated outlets in them... I looked at flooring, the laid linoleum... even though I would love to do something else, with the pups, I think I am going to have to stay with that, and actually the one I like is a "standard" at Lowe's... plus they would even lay it very reasonably, if so happen something went awry and my contractor could not do it... I FOUND MY GLITTER FOR THE PAINT! I knew they would have it! I had to search and search, then finally asked two people and one lady knew exactly where it was (which was in a very stupid spot if anyone wanted to find it).... I priced fencing, and I did 5 5 pieces of chair railing... that should be enough to finish the living room! So, a few touch ups with the paint, and putting those up.... I have a new door knob for the front closet... that stupid thing broke about a month ago, and there was no way to get into the front closet, I beat on it, I pried on it, I even took the pins out of the door, and I thought I would never get it open... so finally when the plumbers came, they thought they may need to get in there, and they were able (with a great deal of elbow grease) to get it open finally... of course between myself and them we destroyed that door knob... NEVER in my life, have I seen an "inside knob" that damned sturdy.... I never thought I would get it out... so I bought one with the plates and a glass knob on it... I wanted to do that in this house to all of the closets and never got around to it... and on Amazon I can get the whole thing for about 14.00 including the back plate... so I am going to put that up after I get that closet painted... those closets have NOT been painted since we moved in which was about 1964 or so! Dad painted and did everything else, BUT not the closets, they are horrible! So, paint that is left over, that is okay colors I am going to use in the closets.... anyway, I still have lots to go... I am having him build me, kind of like a cedar platform off the front porch, so it will be large enough to hold my inside plants when I put them out during the spring and summer months.... the porch... OMG those rails were so rotten... I took all of them down myself earlier this week. I only like one post, that the concrete bolts had paint on them so I had to WD 40 them and now I can get those loose also.... I hope between me working until the other guy can come, I will have him paint the ceilings also... no way I can do that... and finish up the stuff I cannot do... I will be moving in by the end of October, first of November... I hope... depends on my own health, the weather, how quickly he can come and get on it... like I told him the garage siding can wait for a bit... mainly the fence, finishing up the painting inside, and I've found a kit I maybe able to help the inside of that damned old tub look better... I am going to order one and try it... it is hideous, but having someone come and redo the porcelain on it would be thousands of dollars... I still want to break that sucker into pieces, get rid of it and put a walk in shower in there... but I know the work trying to take a sledge hammer or a saw to that tub and cut it out of there, it takes lots of work...... Anyway, again I am in a "funky" frame of mind right now... I thought moving over there would be what I wanted, especially after the remodel, now I wonder if that is a good decision, but I cannot do the work this house needs... I cannot roof it, and could paint it outside, but only so much, and it just needs someone who can do the things it needs themselves... a time ago, I could have done it all but the roof! LOL! but that was when I was in my 20's and 30's..... I have painted an entire house outside more than once for sure.... but at my age and with my health issues, my body is already mad at me... my right hand keeps swelling up, and my right ankle is still not all the way well.. and my neck NEEDS SURGERY! I was so hoping to get that done before the end of the year... once again I face whether to keep my insurance or go back to another, and that is coming up soon...more stuff that needs to be done!  Rhia

"GO GOLD"! Fight Childhood Cancer!

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