Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts

Thursday, December 14, 2017

Several New Clinical Trials Our by "Cure Click"...RA, Diabetes, Fibroids, Lupus, Memory Problems and more...

There are several new Clinical Trials out sponsored by Cure Click... I've been so busy tied up with things around the house especially outside before the cold weather gets here, that I hope after the holidays, I am "back on tract" with my blog, writing, Social Media, book, and activism..,


I've tried to post what is most important, and then I also had "browser" issues. I have decided finally to "switch" to another browser, but I am still not thrilled with it. I guess I was so comfortable and familiar with the other one, after many years, that I've found it difficult when I really have not had the time to learn more about it to feel good about using it.

But the other one, which all of them are memory hogs, was just ridiculous... it was getting to where it was locking up every other moment, and I was having to force quit it and restart it all the time. It was SO SLOW... also... and I have plenty of "memory" as far as that goes, but all of the "items" that browsers "keep", and of course some "cookies" you find are helpful, but the cache is ridiculous at times...

Plus I believe after the last "update" they did, they had some type of virus. It was never as bad until about a month ago, and I got just fed up....

Anyway, I wanted to give you a heads up on these Clinical Trials, many of you maybe interested in them...

There aer still others that are in clinical trial phase also, and the graphics and links are on the sides of my blog... so be sure to check those out also... I will get these up also, as soon as time allows!!!


HAPPY HOLIDAYS AND MAY YOU HAVE A BLESSED UPCOMING 2018!


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Friday, November 24, 2017

Check out my Daily Newspaper for the latest articles on Chronic Pain, Autoimmune Illnesses, such as Lupus, RA, & joint issues, plus many more "health related" information!


This is just one article from today's addition, and I have discussed this several times over the years, even my Mom used to say before she passed away last year, she did not know people could go and withstand the types of chronic pain she saw myself and many others go through....

 

http://www.clinicalpainadvisor.com/chronic-pain/suicide-attempts-in-chronic-pain/article/697827/



Here is the Latest Addition of my Newspaper for today Friday 24th, 2017


http://news.autoimmunearthriticsystemiclife.com/#/


Life Chronic Pain Autoimmune Systemic Diseases & Dementia



Sunday, August 6, 2017

The Memories of Life BEFORE Chronic Pain & Illnesse"S", thoughts of simpler times, knowing one should NEVER be "complacent" & not share your feelings, all too often "we" lose out

In The World We Now Live In, All Too Often Many Of Us Remember Times that were Simpler, Many of Us Without Chronic Pain and Suffering, not Fighting to Get Into See Physicians, or Fighting to Get Insurance Companies to Pay the Bills. We also Were Not "Surrounded by A Sea of Specialists" Parents and Kids Never had to Be Concerned Over "kids Abusing Drugs", we could Leave Our Windows Open, Our Doors Unlocked, Those Time When a "Mean World" did not exist. You Could Walk down The Street, You could Drive down The Highway, Kids could Play in Their Yards, We were not a Country, And World filled with Violence, Hatred, Bigotry, None a few years ago would have been a "Suicide Bombers" or 'Home Grown" Terrorists; in fact any type" of Terrorists

 

 

Time were filled with good memories, vacations with families, getting together with the Neighbors, Having a "treat" of a Hamburger and Fries on Paydays. Deer Hunting, Fishing, and Our Minds Filled with The Promise of a Brighter Future... now WE LONG for those times that gas was .50 a gallon, and $10.00 would buy enough groceries for a month. We have such gratefulness and I know for myself, a "Longing" to live in "that World" again...

 

I had been "going over" all kinds of memories, good times. lousy times, and all of the "quickness" of how time goes by. My daughter and I were talking on the phone yesterday. She had taken the boys to get school shoes and clothes. She was saying that of course Logan, the youngest, still has a "school supply" list, yet James, who it just dawned on me, my oldest Grandson is going into JR. HIGH SCHOOL this year. So, of course they wait for many of the supplies because the teachers will want different things. That got me to thinking and remembering what seems like just yesterday, that Amanda and Jimbo brought James up from Corpus, he was only about 6 WEEKS old, born on December 6th, 2005. I had really just moved back to Texas, after being in Seattle for almost 5 years, and only had been back myself for about 2 weeks or so.

 

I got to looking at all of the photo's over the years, how little James was, then Logan, who is almost 5 years younger than James, is also getting much older, growing like a weed, and is now I believe 7 and going into the 2nd grade! Heather my Granddaughter, who was only 2 years old when Amanda and Jimbo began seeing one another, is now been out of high school over a year, and is starting on her 2nd year in college, working, and getting ready to go to nursing school probably next spring. As I thought about my years, my hopes, dreams, possibilities, the things I accomplished, things I wished I had accomplished, and that "list of deals, times, events, and yet dreams" of what we "hope" we get to do, before we are "no longer here" on this "plain" and have stepped into another realm. I've been blessed with the incredible children, grown, never was into loads of trouble, drugs, causing problems, both have the high school diploma's and have some college, certificates and so forth. I had a son in law that is that is the most caring, nurturing, loving, comforting, care taking husband, son and Father I believe I've ever known.

 

 My daughter and him met when she was about 15 years old, and as of today, and what will probably be the rest of their lives, that have a stable, happy, loving home, with three incredible kids, and they are blessed, and I am blessed and a better person for my daughter, son and son in law. When I think about how much I "missed out on" from my personal ideology that I so wanted to accomplish, I began pondering that first of all, when I was in school, and for the most part when my kids were in school, there was NOT a great deal of "meanness" of drugs, of those who choose to terrify other kids... life honestly was much simpler, especially when i was in high school. Yet, the very things I felt I would either "do" etc in my own personal life, much I never accomplished. I wanted to be a nurse, and in the medical profession, from the time I was about 13. I began my "writing" at 14, and felt I would be compelled to be a very accomplished author in the time to come. I wanted to travel much more, even overseas to many of the European countries, yet I've only been out of "the states" once, and that was to Mexico. I never even got the chance to go up to British Columbia when I was in Seattle.

 

It happened that I went shortly after 9/11, and things at the borders had really changed. In fact, I never owned a passport. I've seen many of our states, had many vacation from those with my parents, to those that I took my kids on, to those I've been with someone else, and then even by myself, to Austin TX, to Lancaster CA, to Phoenix AZ, been snow skiing, and have had many great experiences, even though I also "missed out" on many, that for one reason or the other, life turned me a new direction, thus I did something else, other than what I "thought I would".... at 57 years old, and suffering from several chronic and severe illnesses and pain, it makes it more difficult that when I was younger and in better health to jump up and spend a weekend in San Antonio, or go to Dallas dancing, or just for a night out on the town...

 

 I still have "some of those dreams" on a list, I don't really like the term "bucket list"... for some reason that just does not sound correct to me... but I have come to see that life is a challenge and LIFE FLIES BY TOO QUICKLY, you blink and you are in college, and you blink again, and you are over 50... pondering over where the time went, and why you did or didn't do some of the things you did. I've had many people over the years ask me how I "withstand" the illnesses and pain... 

 

well "faith" and "hope" along with what little bit of family I have, along with my "fur babies" keep me trudging forward even when i feel like throwing in the towel. So, tell everyone you love, that you love them, every chance you get, never take one moment for "granted" for the next one may not be there, never pass up an opportunity, if you can, to do something you have always wanted to do, be kind to those around you, be courteous to the elderly, those who are suffering, and even if you don't "give financially" giving FROM THE HEART, and with NO expectations, other than it made you feel good to do something... for coming from the heart and soul, is truly blessing someone else. I sit here today, alone, well Peanut is here, but no other "human" - and I do get lonely, I do at times feel that I've "failed" at marriage more than once. But, in my heart of hearts, i do cherish the "love" I've had, have and maybe someday have again.... Thanks to each and everyone of you, that give me a "lift" when this life seems to "weigh me down".... for you are a true blessing yourself....

Thursday, March 16, 2017

Thursday’s Addition of my Newspaper "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia



For those of you who may not be aware of my daily Newspaper I have and put out everyday here is a link to today's latest addition for today's paper! LOTS of great information here on Chronic Pain, Lupus, RA, other Autoimmune Illnesses, Dementia, and more. There are usually pics, along with articles, and video's daily. 


Please stop by and see the daily additions. I usually update it at least once daily in the mornings, and sometimes twice daily if I feel there is more I should let you know. There is also a link that has that information on the side of my blog pages if you can't find it one day. I've been getting quote a good deal of positive feedback, even from Twitter, IN, FB on several of my pages, and more.... 

Come by, visit and give me your feedback!

Thursday, March 9, 2017

Dementia linked to Autoimmune Illnesses? This is both interesting and frightening....


Dementia Risk Up with Autoimmunity



http://www.medpagetoday.com/rheumatology/generalrheumatology/63498?xid=nl_mpt_special_reports_2017-03-09%20&uun=g773630d0r5952786u


Here are a few excerpts from the article on Medpage Today...

Among the 25 autoimmune diseases, 18 had significant positive associations for dementia (P for all <0 .001="" p="">
  • Addison's disease, RR 1.48 (95% CI 1.34-1.64)
  • Multiple sclerosis, RR 1.97 (95% CI 1.88-2.07)
  • Psoriasis, RR 1.29 (95% CI 1.25-1.34)
  • Systemic lupus erythematosus, RR 1.46 (95% CI 1.32-1.61)
  • Thyrotoxicosis, RR 1.31 (95% CI 1.27-1.34)

Of the 81,502 patients with autoimmune disease who also developed dementia, the subtype of dementia was identified in 42,568 -- 20,032 with Alzheimer's and 22,536 with vascular dementia.


Risks for vascular dementia but not Alzheimer's disease were increased for idiopathic thrombocytopenia purpura, pemphigus, scleroderma, Sjogren's syndrome, systemic lupus erythematosus, and most notably, for polyarteritis nodosa, with a rate ratio of 2.12 (95% CI 1.42-3.05, P<0 .001="" p="">
I have a "genetic" factor for autoimmune illnesses on my Mom's side... and also Dementia and Alzheimer's on my maternal side... Cause to really be upsetting and hope they do much more research into this....

Friday, February 24, 2017

Friday's Addition of my Newspaper "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia

For All of you that may not know that I also have a Daily Newspaper that contain all types of articles about Chronic Pain, Dementia, RA, other Autoimmune Diseases, Lupus, and everything that pertains to these types of Systemic Illnesses, Chronic Illnesses, Dementia and Chronic Pain Issues.

From articles about medications, and the "trauma" we are in as far as getting our pain and Opioid prescriptions, our doctors, the government involvement in medications, Chronic Pain people and how more and more people are becoming "victims" of these diseases, Sjogren's is another one.

There are articles about Cannabis and how it is helping some Chronic Pain patients, and other alternative types of treatments, from Acupuncture, Yoga, other relaxation treatments, and the latest on research of new and upcoming medications and other things to help ALL of the horrible illnesses and diseases, plus I also put my blog posts there usually. But, there are video's and articles from anywhere like the Arthritis Foundation, to Lupus, and the Alzheimer's and Dementia Non-Profits.

Please stop by daily and check it out. I would really love to have you come by. I update at least once daily, sometimes more than that, so it is always current.


http://news.autoimmunearthriticsystemiclife.com/#

The name of the Newspaper is:

Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®


Tuesday, November 8, 2016

WEGO Health Blogger Challenge 2016 for Day 8 "I think I I can" OR "I Know I CAN".....

WEGO Bloggers Challenge Day * 2016 - "I Think I Can OR "I know I Can?"




I "think" I can get over the "hump" of losing my Mom so suddenly, and find a renewed life ahead of me - I need to give myself more time.

I think I can get my home fixed up and it be everything I want it to be.

I think I can get back into my writing and blogging, and make my 3rd BOOK a "Best Seller".

I think I can finally face my cervical neck surgery, and my lumbar surgery and they will relieve more of my pain.

I think I can walk through this life, even with all of the medical issues that surround me, and continue to find people that care about me, I think I can find new friends, and move past all of the loss, of not just Mom, but the loss of a relationship, find understanding, the loss of my dear Tazzy, my Pug, who I still miss daily, and move past the emotional pain that continues to dwell within and make me feel as if all I've seen in life is loss.

I think I can do MUCH of the "renovations" to my home, myself, and then "face the facts" there are some things now, my body no longer will allow me to do.


I think I can become a much better activist, advocate, volunteer and "voice" for those who suffer from such horrendous chronic illnesses and pain.

I think I can live my life alone, with my pups, and find the place where I no longer feel "alone or abandoned".

I think I can continue to make great decisions about my future, and continue the path of knowing more about medical research, chronic ailments, and give others hope through my own research and going through what I have been through. 


"I Know I Can!"



I KNOW I can go back to Washington DC one day, and give Congress once again my own life's issues with chronic illness, chronic pain, and how many of us suffer horrendously, and make A DIFFERENCE!



I know I can find more time to write, to work on my painting, my quilting, my gardening, and be able to get on the path, of feeling good about myself again.


I know I can LOVE, my Kids, Grand kids, and family even more every day. I know I can show them that they are my entire world. 


I know I can get these two pups to QUIT peeing in the floor when they are upset with me!


I KNOW I can continue to make this journey through life by myself, take care of myself physically, mentally and emotionally, and gain more insight to myself in the process.


I KNOW I CAN STOP having HORRIBLE NIGHT TERRORS!


I know that although sometimes others do not say it, they are proud of my "charity" works, and I will learn that I DO NOT have to have a pat on the back from anyone else but myself.


I KNOW I CAN GET THE HECK WELL! I AM SICK AGAIN!

 

I know I now can face my own "day of reckoning" when that time comes, whether soon, or decades from now, and I am NOT frightened. 


#HAWMC

https://www.facebook.com/wegohealth/





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.


Been told you or a loved one have #LewyBody #Dementia? Participate in a clinical trial! See if you qualify. http://curec.lk/2e1mP5t 





Sunday, August 7, 2016

Sunday's A.M Addition to my Newspaper All things Autoimmune, Chronic Pain and Dementia! And Suggestions?????

My Brand News Newspaper for Sunda AM is OUT and Here is the link:


http://news.autoimmunearthriticsystemiclife.com/#!headlines


This is MINE to Add, change, or whatever I feel my audience" wants to read, see, hear more about and so forth (as far as health issues go) PLEASE FEEL FREE TO MAKE SUGGESTIONS...if yu have another health issue, or would like to see more about something in health, let me know and I can go in and get more article and information about those topics as well as the ones I am giving you!

I am DOING THIS FOR YOU!!! "My "Audience) So, post, email ,speak up even post on the paper itself and give me your personal thoughts and issues!



Monday, July 4, 2016

Happy 4th, Me and Houses, Painting, cleaning, and having another "spell" last night of the cold horrid sweats all night long.... (Oh and a New I-phone (although I said I would never have one), a new bathing suit, & coping with losing Mom

The weather turned really terrible here last night. Bad enough I turned off my computer until now. We had an electrical storm worse than I've seen in a long time for right here. The thunder and lightening was bad all night long and even until about an hour ago, we had constant thunder and lightening, as well as rain. Thank goodness nothing else, but the wind was bad before the other hit. I noticed there are several smaller limbs down in my driveway today. So, the wind was pretty strong when the storm brought its leading edge in. I had one of the HORRIBLE BAD I HATE COLD SWEATS ALL NIGHT LONG! It was one of the worst I've had in a long while. My hair was totally dripping wet, and my clothes, my pillow, even the cover I have on the sofa was all wet where I had laid, but it was one of those that I was cold, shivering and had the blankets pulled up over me... even the dogs thought I was nuts I think....LOL... I did not feel all that great yesterday. I went over and was doing some painting on the kitchen cabinets at the other house, and I really like this blue color I picked out for them. And I think I've found the "white" I want to use to make the bottom half of the paneling look like "wainscott" and then I already know which board (decorative) I am using to be the "chair railing" between that and then the color up at the top. I am going to use a lighter blue on the walls, and then the same color in the dining room. So, it is slow and tedious. I've never been great at painting anyway, and these are lots of cabinets that have to be painted in the inside of them also, so that will take even more time, especially the ones on the bottom, because they are so "deep" as in far back to the back walls. Then I've got to get something to cut the "yuck" off of the venta-hood, and over the stove. Those cabinets are so "sticky" from Mom NOT using the venta-hood I think, that before I can paint those, they will have to be "degreased" for sure. Anyway, the floors I think will be okay. I've been doing some cleaning on them, and put down some wax in a few spots, but I know Dad used to have a "buffer" that he used on them. It is long gone by now, but I imagine I should be able to rent one I imagine. I found my paint at Sherwin Williams, so I am going to ask them if they may either rent those buffers for wood floors, and if not, they should know who does. By the way anyone around here, don't waste your time going into "Dirt Cheap".... I was disgusted with it and walked around about all of 4 minutes and left. They have "stuff" and clothes etc, but honestly, all of it appeared to be definitely either something wrong with it, or things that some appeared to be just not even "new", or were damaged... They had people in there buying but I saw nothing that interested me at all... BUT I DID FINALLY FIND A BATHING SUIT!!!! I could NOT believe there were NONE at Wally World... So, I had a coupon for 10.00 off at Beall's online or in the store, plus they had like another 50% marked off of their already marked down stuff, so I found a top that has the "bodice" on it, that fits nicely to the figure, but is not a one piece. It has a completely separate bottom with it, and I got them both even after tax for like 14.00! They were regularly 35.00 a piece! 

So, we shall see when it comes in... but I did NOT want some "one piece" like I was 85 years old looking, yet, with the pain pump sticking out of my side dammit, I can no longer were just any 2 piece, and I've not had a swim suit in many years. So, I ordered it, and am anxious to see if it fits and what it looks like. Then, I had to finally break down and I have a new cell phone on its way. It should come in tomorrow. My other one has gotten to where I just don't have enough minutes, and to buy extra ones was costing me more than getting a new phone and an unlimited plan. Since I don't do a lot of "data" usage on a phone, I got a pretty good plan, for not much more than what I was paying anyway, plus yes, I will have an "Apple I-Phone now".... 


I SWORE I did not need one and that it was a waste of money, but actually I got the "5" version, and they have a 6 plus or something out already, but I did not need all of those bells and whistles, thus I am going with this one, and I've already got my phone number for it. I chose to begin over with a brand new cell number, since things are so different now with Mom gone, and there are many that had my contact phone with all she was going through. So, I decided to go with a brand new phone, brand new phone number, and for now I will continue to keep my home phone. I am still getting it for a good price, so I shall see in a few months how things are with the cell phone, then make the decision whether to get rid of the home phone or keep it. I kind of was "tacky" over at Mom's house the other day. Some fool wanting to "sell her" something called and before I could get a word in, he began his spill... so when he shut up, I said' She is dead", shall I give her a message? OMG! Talk about silence at the other end of the phone...

 I know it was harsh, but they were constantly calling her trying to sell her something all the time...that is like the DAY of the Funeral, we were all over at the house cleaning, and taking stuff out to the trash etc... and there were THREE PEOPLE, and more who drove by that had the audacity, to stop, and ask if the house was "for sale".... I and my daughter and son in law, and son were so pissed... these people go through the newspaper, see these elderly people who pass away, then drive by their homes and ask crap like that... talk about rude.... as my son in law said, next time I should say "Do YOU see a FOR SALE or FOR RENT SIGN?" Then tell them well I GUESS THAT ANSWERS YOUR QUESTION! People are morons... but I do know they specifically had her on some type of phone lists they get from people who are Social Security age etc... 

and they bug the hell out of them calling to either sell them something, or for donations etc... she got them constantly... it was insane.... Anyway, I am still not feeling the best... I had nightmares, and that cold sweat mess just takes all of my energy away the next day.... so I did manage to get some "cleaning" done around here. I have not went over to the other house today yet. I may run over there, after I kind of see what this weather is going to do... it still looks like it could be bad out there, and now we are going to be hitting those TRIPLE DIGITS NEXT WEEK! I do NOT look forward to that at all. Happy 4th to all... Me....

Monday, June 20, 2016

Fight ALZ! "The Longest Day" Brain Health, Cementia and Alzheimer's June 20th and the Month of June




TODAY JUNE 29TH, THE LONGEST DAY! CHANGE YOUR LOOK TO:


I AM A voice for my mom, WHO JUST PASSED AWAY A WEEK AGO LAST THURSDAY OF ONE OF THE MANY HORRID DISEASES OF DEMENTIA! I Also watched her parents, both of my Grandparents suffer from these diseases, and I am concerned not for just myself, but my kids, their kids, and the generations to come... of ALL families... we NEED to END ALZ!

Saturday, June 18, 2016

Dementia, Alzheimer's, "A Quilt to Remember", getting back to somewhat of a normal, life, Advocacy work, & making a "Quilt Block" in Memory of my Mom & both Grandparents

Alzheimer's, Dementia, Quilt to Remember,Mom, my Grandparents, and for our generations to follow


YES! IT is 4:30AM and I am UP!

 I have not been able to sleep again in a couple of days. I am not sure if it is just being "down" during the day with my ankle, or feeling a bit "edgy" that I am NOT up and doing some of the things I need to be doing. Both pups have also been restless, especially tonight. In fact the little one my Peanut Holy Terrier, :) was a bit sick to his tummy. But, that pup will EAT ANYTHING! I have to constantly keep a watch on him...because if he can get his paws on it, it's going in his mouth, and more than likely he will eat it. I hope it is a "puppy thing" for I know my Tazzy did that when she was little. But after she turned about a year old, she got out of that picking it any and everything in her mouth. Plus he CHEWS on everything! My other two did, some, also when they were in their first 6 to 9 months, but after that, they began to ONLY CHEW on what they were supposed to. I hope Peanut does the same. But he is definitely, "a pup of a different color" for sure...LOL! Stubborn as a Mule, yet he is coming out of that a little now. He also thinks my hands are "chew toys"...so we have really been working on NOT "chewing, nipping" at Mom's hands and on Bub's ears... They seem to get along good, but there are times since Bub's is older, he gets enough, so he puts Peanut "in his place"... he never hurts him, he just gives him this "look", and Peanut KNOWS to BACK OFF playing for now... :)

They both like me to sign to them, and I did finally get Peanut a "song" I made up, plus he already is getting a couple of nicknames, I catch myself calling him "Pea-knuckle" (spelling like the game Pinochle" - or LOL something I bit "off" color, since he was neutered, I call him "Peanut-less" at times.... LMAO! Well, believe me ALL of them have had several names and always learned that by either that name, OR my TONE or BOTH, either things were good, or they had done something "not so good".... just like kids, these fur-babies, seem although at times to continue to be fur-toddler's most of their lives... They have really been "trooper" though.

Through all of this with my Mom, I had to be in and out so much here at the house with them, and that was something they have not been used to, I know there were days they both could not wait for me to "cling" the keys and open the doors and both standing, jumping, barking, and crying for joy that "Mom is finally HOME"! So, it has been a difficult time for them, a totally weird schedule, and not our "normal routine", although I tried to give us "our time" each evening together... and then I know they have sensed me being upset, in a turmoil, and also both of them especially Bub's knows when I am not well myself, and it is almost like he "watches" over me, sitting beside me, and even at times he will be there, and he will just let out this kind of almost a "cry" wanting me to "sit down" with them, and be still for a little while. So, having me "home" the last couple of days to themselves more or less, and spending time down with my ankles, they have been in heaven right beside me.


Okay... now to another reason for this POST, I want to do a "quilt piece" for the "Quilt to Remember" tour that is going around the nation in honor of those who have had these horrid diseases of Dementia, and have taken away their minds, in so many different ways, time frames, and so forth. I had been an advocate already in many ways for the Alzheimer's Association but I had forgotten about the quilt. So, when I wan in getting information on where to donate in honor of a loved one etc, or in memory of someone, I saw that website about the quilt.

Since both of my maternal Grandparents had some form of Alzheimer's and Dementia, and now my Mom, I want to do a quilt piece to go with this quilt around the country. I've submitted my "story" and asked for instructions about the quilt block, which for an individual is 4 feet by 4 feet.

Since my Grandmother made MANY quilts completely BY HAND, not one machine stitch in them, and I have also been able to do a quilt, and have actually a oversized, probably King sized almost top finished for a quilt, I decided what better way to "give back" and also hope to help to find the reasons for these horrid, mind taking diseases, and give hope that we find reasons, find more help, have more research, find a cure, or find out what we can do to completely STOP some of these types of dementia's. I am enclosing the "link" here for this project. I have several ideas already and really already have materials etc, (some I found over at Mom's, and I think it is still good enough to use in the quilt) and am waiting to hear back on details about the quilt block and getting it to them -




Here are a few example of blocks made by people for the "Quilt to Remember"


Created by Colleen Anderson,
Fargo, ND,
in honor of her mother, Patricia Kelso


 Created by Phyllis Bednarek,
Woodridge, IL,
in memory of her mother, Mary Estelle Ruppert 




Created by Bernadette Discon,
Jackson, NJ,
in memory of her husband, James Russell Discon


Created by Kimberly Fondaw,
Grand Rivers, KY,
in memory of her mother, Geraldine M. Brown 


ALL of these are from the website about the quilt! Plus there are many, many more that give me some wonderful ideas for doing one in memory of my Mom. 

Thursday, June 16, 2016

To that Pearly White City.....

Again I want to come in and thank everyone for their love, prayers and support during such a very difficult time in our lives. Dad passed away 11 years ago, which seems almost impossible. In fact, it fell this year that March 27th, was Easter Sunday again, which was when he passed away. By the Lord's grace, He allowed me to take care of Mom, and be there to watch her leave this world, and pass onto where she was met with open arms by everyone who went before her. I had not told it here yet, but on that fateful Thursday morning, I went in to give Mom her "comfort" medications supplied by Hospice, as I did every few hours, and during that morning dose, I "knew" it was time. I had said that I would "know" somehow, someway, it would come to me, and it did. She seemed almost a bit more at peace in some way, yet, I could also tell she was almost "trying" to tell me. So, after giving her the medications, as I always did each morning early, I walked outside, around in the yard, just thinking, praying, and finding my own "way" also to make it through another day, and pray all I did helped her. When I came back in, I sat down beside her on her left side, and took her tiny frail hand in mine.

She never moved, and most of the time, even when giving her medications she would make a bit of noise or move a bit, so, all I knew to do, is what came to my heart. I began to sing a bit of several hymns that she loved to hear Dad sing. Of course "Pearly White City" was one that Dad always sang, and it was always requested that he sing many, many times at church, at other funerals and such, so that last chorus I began to sing of Pearly White City, this sense of calmness seemed to fill the room, and the tears flowed down my cheeks, and as I finished the last few words, Mom literally took maybe 2 breaths, and then just stopped. I sat there holding her hand, talking to her, and knowing, her pain, her confusion, and all she had endured was now gone. We are "selfish" as humans, and of course I did not want Mom to "leave", yet I could feel her within my own heart, and I knew no matter what her body was no longer able to do, she will always be with me, everywhere I go. I told others that it is almost like when I finished that song, it was Dad telling her to "come home". I want to thank everyone once again, and Joy it is so good to hear from you and your family. I truly would love to get to see all of you, it has been so very long.


Uncle Macon and Aunt Cleo were always my favorite Aunt and Uncle, and it was always a blessing to be able for them and sometimes your, your family and Mike to come also. Craig, thank you also. We have known one another since we were very young, and I appreciate your thoughts and prayers. Ron, I appreciate your prayers and condolences also, and it is funny it seems like just yesterday we were all working at EBF, or would be seeing each other in town, and although I've been back now for almost 11 years, I don't see many people, as much as I would like to. Thank you Jim and Frances, and thank you for the beautiful plant. I LOVE plants, so it will fit in very well with my collection for sure. I have to again give a huge thanks to Keever's, everyone helped me out and as always were so compassionate and caring. I thank Father John for giving the funeral service, and for all of the family and friends that stopped by on Sunday and Monday. All of you truly made this situation "easier" on our family.

We love all of you, and what a blessing it was to have my daughter Amanda and my Son In Law, Jimbo, and my two Grandsons here, plus having my son Jason with me, we even under not such great circumstances were able to have "quality time" together, and that is something we over the years have not nearly had enough of. I want to thank Family First Hospice for all of their support and comfort, for Mom and for me, as well as Physician's Choice Home Health Care, who were there to help me and Mom out for a few weeks before things had to go into "Hospice" care. I again are am so thankful and blessed. As one day, rolls into another, and as my heart is full with love, and as my mind and body try to "heal" long story, but of course I got sick, and was sick, mainly my Lupus acting up, but then I slipped on wet grass Sunday morning, and sprained BOTH ankles, the right one severely, so I am trying to take it easy for the next couple of days and allow my body to try and mend. -


Pearly White City Hymn Lyrics

There’s a holy and beautiful city
Whose builder and ruler is God;
John saw it descending from Heaven,
When Patmos, in exile, he trod;
Its high, massive wall is of jasper,
The city itself is pure gold;
And when my frail tent here is folded,
Mine eyes shall its glory behold.
Refrain
In that bright city, pearly white city,
I have a mansion, a harp, and a crown;
Now I am watching, waiting, and longing,
For the white city that’s soon coming down.
No sin is allowed in that city
And nothing defiling or mean;
No pain and no sickness can enter,
No crepe on the doorknob is seen;
Earth’s sorrows and cares are forgotten,
No tempter is there to annoy;
No parting words ever are spoken,
There’s nothing to hurt or destroy.
Refrain
No heartaches are known in that city,
No tears ever moisten the eyes;
There’s no disappointment in Heaven,
No envy and strife in the sky;
The saints are all sanctified wholly,
They live in sweet harmony there;
My heart is now set on that city,
And some day its blessings I’ll share.
Refrain
My loved ones are gathering yonder,
My friends too are passing away,
And soon I shall join their bright number,
And dwell in eternity’s day;
They’re safe now in glory with Jesus,
Their trials and battles are past.
They overcame sin and the tempter,
They’ve reached that fair city at last.
Refrain


Mom's Favorite Song

Candle In The Wind (Elton John - for Princess Dianna Tribute)

Goodbye England's rose
May you ever grow in our hearts
You were the grace that placed itself
Where lives were torn apart
You called out to our country
And you whispered to those in pain
Now you belong to heaven
And the stars spell out your name

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Loveliness we've lost
These empty days without your smile
This torch we'll always carry
For our nation's golden child
Even though we try
The truth brings us to tears
All our words cannot express
The joy you've brought us through the years

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Goodbye England's rose
May you ever grow in our hearts
You were the grace that placed yourself
Where lives were torn apart

Goodbye England's rose
From the country lost
Without your soul who missed the wings of your compassion
More than you will ever know

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Your footsteps will always fall here
Along England's greenest hills

Your candle burned out long before your legend ever will

Wednesday, June 15, 2016

Me, Ill again, sprained both ankles, yet made it through the funeral, and things are "okay".... more later...

Quickly, of course all went well actually with Mom, the funeral, and so forth. Things turned out nice, but simple as she would and did tell me many times she wanted. So, for that I feel blessed. I will miss her more than you can know, right now, I feel I am still in "shock" because it all happened so very fast. Yet, if it has to happen, that honestly was the best "outcome"... no longer her suffering, no longer her not knowing anything, and I just am "grateful" in many ways, that if this had to be as is, it did as it was... The Lord knows "how much" we can handle... thus He also allowed me to accidentally slip Sunday morning off my own porch in the very wet grass, while on the phone with Amanda Batson- Matheny and I SPRAINED not just ONE ankle but BOTH, the right one extremely bad. I did go and have them X-rayed Monday afternoon after the funeral, and they feel there are no breaks BUT due to the immense swelling, he said I may need to have especially the right one X-rayed again in a few weeks, depending on how it does... Amanda Batson- Matheny, Jimbo, Jason Harber and other friends and family, I am so very appreciative of the kindness. the help, and how many of you surrounded around each of us and Mom so we could find some "peace" in that Valley.... I shall later again tell more about last Thursday when she passed away, her little frail hand in mine, but honestly I AM SICK! I "thought" that us having all the of stress, eating out so much, and I am not used to that, not sleeping, and being so busy with everything had just worn me down but I woke up running fever this morning... so I guess that is God's way of "keeping me off my feet"... I can "endure" the severe ankle sprain pain, BUT I am a baby when it comes to fever, even just a degree gives me the worst headache and just makes me sick as hell. So, I am dealing with that this morning, which for now is okay... we got a great deal of things going and done, and of course over the next weeks and even months there will be more... but for now all of the most important things are done, and we all need a bit of rest and time to reflect... so if you don't "see" me here or hear from me, I am just feeling lousy between all of it and I am not really even online, nor answering the phone unless it is Amanda, Jason or someone "important" for now.... Again from all of my family to all of you our sincerest Thank you's.... Life is truly fleeting.... Rhia

Friday, June 3, 2016

UPDATES THANK YOU'S AND EXPLANATION AS TO WHAT IS HAPPENING IN THIS NECK OF THE WOODS...

Congrats to My AWESOME GRAND DAUGHTER!!!!!! Heather I am so INCREDIBLY PROUD OF YOU :):) As you move forward in your life may nothing stand in your way, of you following ALL of your Hopes and Dreams! You are truly a Treasure and I could not ask for a better Granddaughter, and those two wonderful brothers of yours ;) Have fun, be safe, and live your life as if you are on top of the mountain! Nana Pam






 

Just a quick "Hello" and thanks all. Today is such a mixed day mentally, physically and emotionally.. I SO wanted to be at my GRANDDAUGTHER'S GRADUATION TONIGHT NEAR CORPUS, but alas with Mom as she is, and the WEATHER making life hellacious for everyone just about, I had to postpone my trip. Then I hate to whine, but MY BACK, LEGS, BUTT AND HIPS ARE ON FIRE!!!! after I got Mom in from the hospital night before last... dumb move on my part, but stubborn I guess shows me I should ask for help... at the moment I did not have one clue who to ask... but she is resting well. The aide came and got her all cleaned up, and I gave her all of her "comfort" medications, got things done there, and I just had to come to "home" for a bit, for the puppies, for me, and I need to get off my feet at least for a while.... love to all... and I am totally more than exhausted... so if I don't post, or accidentally don't answer the phone etc... I am just totally out of any "brain wave" at the moment.... 



Before it slips my mind, A HUGE CONRATS!!! to my incredible granddaughter today!!!! HEATHER YOU ARE SUCH A WONDERFUL YOUNG WOMAN, AND AS YOU STEP OUT INTO THE WORLD OF COLLEGE AND BEYOND, MAY YOU FIND ALL OF YOUR DREAMS COMING TRUE... I SO WISHED I WAS ABLE TO COME, BUT OF COURSE BETWEEN GRANNY STEELE, AND NOW THE WEATHER SO HORRIBLE, I HAVE TO POSTPONE, BUT MY HEART AND SOUL WILL BE WITH YOU THIS EVENING!!!! Love to you... and love to your brothers, Logan, and James... and also to your Mom, Amanda Batson- Matheny and Dad Jimbo! 

Thursday, June 2, 2016

Update on Mom the Alzheimer's, getting home from the hospital and of course hurting my back again, and so forth....

You are all such a blessing, and know you are so loved and appreciated... Mom and I had "hell" getting into the house last night. They did not officially discharge her till like 6PM! And I had to get her into the house by myself, so with her having having both back and front, I chose the back, with two lower steps, and using her walker, we very SLOWLY and with a few "choice" words, LOL, made it into the house, and finally to her bed. Hospice DID come by last night around 7PM, I was so shocked, I did not expect a nurse by, plus they had a courier bring some stronger pain medication for her, and now all of her medications will come via courier.... so that will be easier... of course now Hospice has taken over for the doctors etc as far as the dementia, and anything "to do" with that diagnosis, etc for now.... so I am hoping it will "settle" down a little... I really did a huge NO NO though - I injured my LOWER back, which already needs surgery, between all of the walking yesterday back and forth, our hospital is laid out so stupid, and you have to walk what seems like a mile just to get to patient's rooms, but then getting Mom in the house, I did a real number on my lower back and my neck.... I got her settled in and came home very early this morning to do some stuff done here, that I have to do and then I will head back over there, because her Social Worker, Aid, and so on will be coming sometimes after 8AM I gather... so it will be another day of hell I think, just being up on my feet, and getting stuff in order and so on... but now the Ensure, pads, Depends, and any and all "medical stuff" she needs, they will automatically bring us. and I no longer have to be picking those things up, including I gather most of her "meds" ... not sure if it is all of them yet, but ones that go along with the hospice diagnosis they will get and have brought to me... which is some help... then they have a list of people I can have either come "sit" with Mom in the week, night, day, etc for a few hours, some volunteer, some I will have to pay, but I can still go with ""Home Instead" which is a "sitter service" BUT they will have someone there, and I don't have to worry over if I get sick, or need to be away, and someone HAS to be with Mom, even though it means paying for them, they are bonded and so forth, I've met with one of the main case workers already.... and it is MUCH less although not cheap, than putting her in a nursing home, which means about at the lowest 3,000.00 a MONTH for room and board.... so hopefully we can keep her at home, where she REALLY wants to be, and hydrated, and well enough to avoid the hospital again... I can't say how much I appreciate all of your thoughts and prayers... and I need to get busy getting things done here, etc... but I will post when I can... Love to all of your guys and gals, Rhia Steele "All things Autoimmune"

Saturday, May 28, 2016

Home Care for the Elderly, Hospice, Choices that are difficult to make for all of us with elderly parents suffering from all of these types of Dementia's


Here are a couple of links that maybe helpful to some of you also.....


 https://www.homeinstead.com/742

http://www.caregiverstress.com/






These are the people that are going to help me with Mom and this way I can possibly keep her at home, and not put her anywhere else... I found out thought that they are like an "in home" adult day care not "true" Hospice. When you go into the "true hospice" scenario, then Medicare pays 100% of the bill BUT, no longer can you see "your own doctors", your medications are taken care of by them, and basically they take over all of it, and I can have the choice, say Mom came down with pneumonia, and needed to be in the hospital, I could stop "Hospice" immediately so her own PCP etc can take care of her, then restart it after her being in the hospital. 

I was kind of taken back when the Home Health Nurse told me that they could "no longer" see her if I went to Hospice, when the woman that came and spoke to me about "Home Instead" said that I could keep Home Health and have Home Instead here also. That is because they do not "take over everything", they provide more help as far as staying with her in the home as many hours as I want a week, day etc... 

they will help make sure she eats, has something to drink, does not "fall" again, can change sheets, do light laundry, and even run to the store for her, if something was needed, or say I come down and I am too ill, or when I have surgery, they can fill in and do all of their part staying with her, when I can't go over during that time... which is WHY the woman I talked with from a true "Hospice" ran by Medicare said in the 1st place they would "probably put her" in one of the "homes" NONE of which are even located near me! And basically it is $3,000.00 a MONTH! or more depending on the place, and she was more of a "sales woman" trying to make me spend Mom's money to put her somewhere than trying to do what I want and need at this time, and that need...

... someone to be there a few hours a day, a few days of the week, so she is being seen about, like I feel she gets up and falls when I leave... so sometimes in the late night or early morning, that is when this either falling, or she spills things, does not drink her Ensure, or eat... after I leave... I can pick the times, how many hours a day, how many days of the week, including weekends if need be that I need these people... again all here at her home NOT in some "nursing facility"... and they are very well trained... and have monthly updates and training meetings, so they are very versed in "dementia" Alzheimer's type of care... 

Anyway, I HAVE to get someone in ASAP! After her being on her knees by the bed, wit all of the sheets and everything pulled 
After and then she could not understand I just needed her to put her feet under her and push a bit, and we could have had her up on the potty chair, BUT, she holds onto things like the bed, and then she can't "get" to put her feet under her. I even noticed when I had the fire guys come in with an "assist lift" rather than allow them to just lift her and sit her down, she was trying to hold onto things making it difficult for them to put her where she needed to be.... I am also going to buy a bedrailing... 


I am checking on that today in fact. I believe I can get one that will fit on the bed, and now I am also putting her in the middle of the bed, and not allowing her to stay at one side. Plus I am going to look for a couple of "sippy cups" for her drinks. Then I can put the big tray I have on the bed where she is, and things will not spill... plus then things will be within her reach... I feel she does not even know to "look" at the nightstand and "see" drinks, Ensure etc are there.... I am just exasperated with the entire ordeal.... never in a billion years did I think things would be like this.... Life can deal us a heavy hand of no good cards at times for sure....


OH and by the way, MOM IS RUNNING OUT OF PAIN MEDS FOR HER BACK! She is on an Opioid but not something extremely strong. And she had not been really having to take them all that much, until this dementia has put her more in the bed etc. making her back worse... BUT I CALLED THE PAIN DOCTOR... told them the situation, that Mom cannot barely walk down her hall way, even with her walker, there is no way, I can get her out of the house, down stairs in the car and take her up to Dallas for a check up.... 

I just know I cannot even get her to sit in the living room for the most part, much less put her in a car and have her try to get into the doctors office for a visit! BUT he REFUSES to give her a refill (even though she has not had to have a refill since February) without HER COMING FOR AN OFFICE VISIT!!! It is insane and OUR CDC AND CONGRESS AT WORK DAMMIT!!! So, I told my PCP about it yesterday ( I am still in a very bad Lupus flare with a severe headache, and hurting all over) and even HE will NOT prescribe them and he KNOWS FIRST HAND what is going on!!! She is going to run out by next week and what do I do from there????? She is already unable to "move" without screaming out in pain, if we try to get her up and moving, unless she has a pain pill and it begins to work.... so this is just another bunch of crap to pile upon my shoulders.... and they wonder why "pain patients chronically ill" give up and just die... I feel they want us to... I am just livid about the entire ordeal.... 

Saturday, May 21, 2016

FINALLY, A Beautiful Day, more Wondrous than I have had in literally months and months!! Family, time away as a caretaker, as a patient, & feeling somewhat "normal" for at least a day or two.....

FINALLY WHAT IS AND HAS BEEN AN INCREDIBLE DAY IN SPITE OF LUPUS, RA, SJOGREN'S, DEMENTIA, AND ALL OF THE OTHER HORRID DISEASES AND CHRONIC PAIN!


This has been and is one of the BEST DAYS and BEST WEEKENDS that I've had in a very, very LONG TIME! It is so awesome to have my daughter Amanda  and her hubby Jimbo, as well as my son Jason all together in the same space, and be able to have a wonderful lunch (I ate way too much) and just enjoy one being together.... I surely so NEEDED this, and I know for them it is truly important to them also. Plus, although yesterday was a "rocky" start with Mom, I will explain more later, she did finally EAT, yesterday afternoon, and a bit more than usual. :)) 


She has not eaten in days again, other than drinking the Ensure, so seeing her actually eat and enjoy the food, although a very small amount, it was a blessing. Plus, we know she really does not for the most part know who any of us are, even me, I think she did have some lucid moments over the past day or so, and did understand the three of us were there today and were visiting her. 

The road to getting help is my next feat, I HAVE TO GET HOSPICE in there! I had to turn her mattress completely over due to now we are having "accidents" in the bed, that I did not know about, until yesterday... so I bought some of the "Depends" or as Jim and I used to call them "OOps I crapped my pants" underwear... LOL... right now she sometimes just I think does not realize she needs to get up to pee... that is our issue at the present.... so after buying new covers, pads, waterproof for the mattress, and all plus I put some under pads beneath her, so that way, we don't have her laying in urine, and causing sores... we don't need bed sores for sure.... but again, I am so proud of both my son and daughter, and I hope they know just how much I love them, and every day wished that we could be "closer" as far as our distance away in miles from one another... but sometimes life does not "give us" what WE think WE need, it deals out what for one reason or the other WE NEED, and don't know why.... and I also thank my friends for all of their love and support! Rhia


 LOL!!! For some very Odd reason this just seemed like the photo to publish!

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