"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Friday, October 14, 2016
NEW CLINICAL TRIAL BY CURE CLICK - THIS ONE HITS ME PERSONALLY - LEWY BODIES DEMENTIA!
Again this is so critical to me in such a very personal way. If you and a loved one has been diagnosed, or shows "signs or symptoms" of this extremely rapidly degenerating type of Dementia, you can screen for a Clinical Trial sponsored by Cure Click. I watched it take my Mom within 6 months. She had "some signs" of dementia, forgetfulness, and several others about a year or two before. Yet, none that led to a real diagnosis, then this horrid disease seemed to "take over" suddenly, and I literally watched her "change" day by day, as I've told the story so many times. This is NOT your "typical dementia or even Alzheimer's) not that they are not awful, yet Lewy bodies as a whole different type of dementia, aggressive in nature... and honestly, they still lack a great deal of the "why's" of this particular one.... Please share this with others. I would so appreciate you giving out this to others that may have someone they have seen in this type of rapid declining of mental, physical, and emotional realms so suddenly.
Thursday, October 13, 2016
News From National Pain Report and Dealing with the Congress, CDC, and Government and Chronic Pain, Medications and much more!!!!
Chronic Pain Patient Rally Set for Washington D.C.
PLEASE GIVE THIS A READ! IT WAS in my newspaper a couple of days ago, and I wanted to post it here, separately because I know MANY of you are TERRIFIED of what us, as Pain Patients, Chronically Ill, and Already been through the mill, many times shall do, if things change drastically in regard to our medications.... So, I felt this needed to "stand out"... boy I need to again, since it has been awhile post my battle since the age of 17 years old with chronic pain, that started with severe migraines, and never stopped, going into all different types of chronic illnesses, that cause horrid pain....
The YEARS I SPENT just "trying" to find a doctor, a legitimate pain physician to treat me.... and it was only about 10 years ago, I FINALLY FOUND HIM IN DALLAS TX! The man is a true "hero" in my book for sure....
http://nationalpainreport.com/chronic-pain-patient-rally-set-for-washington-d-c-8831671.html
Saturday, October 8, 2016
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
Friday, October 7, 2016
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....
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....
Thursday, October 6, 2016
#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
Wednesday, October 5, 2016
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...
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...
Subscribe to:
Posts (Atom)
-
I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
-
I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...
-
How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo...