Donating Your Organs for Research, Burial or Cremation, Chronic Illness, how life has so many turns, & trying to cope with Lupus, RA, Chronic Illnesses, and living..,

I've had something on my mind, especially after going through what I watched my Mom go through, along with knowing my own health issues, my Grandparents health problems, and family backgrounds. Since I am already an "avid" advocate as far as Lupus, RA, and other Autoimmune Illnesses, as well as Arthritis and now Dementia's.... I've had something on my mind. For some, this may "gross" you out, but for me (and this is after a bit of thought), I feel like when my "time comes" I maybe able to make one more extremely beneficial act, that could help others in the future, even my own family down the line someday. I've been giving serious thought to "donating my tissue and/or organs" for research. Knowing the chronic diseases that I have, and that effect my own family, and seeing that "dementia's" tend to also run in my family, especially my Mom's side, I feel like that is a way, that I maybe able to help stop, find a cure, or give hope to the millions of others out there that suffer from these horrendous illnesses. This is a subject, that I am sure many people don't want to think about... but once you have had someone so close to you and you watch them go through some of these horrid illnesses, you have a deeper sense that you "need to do something" for your kids, Grandkids, and so forth on down the line, along with so many others that need to also find a reason why many of us suffer from them, along with how to "stop" these before they even happen, or "cure" them, put them into remission, or find some way to change what so far we still are fighting with. I also think after seeing the expense of a funeral, and fortunately my parents already had their things in order for that part of it, but the expense of a burial plot, and then the casket and so forth, I can see me doing a cremation, rather than going through the motions and expense of the things that go along with being buried. Now, I am NOT trying to gross anyone out, nor am I (hopefully) upsetting my own family with these thoughts... for they are just that.... 

things I've had time now to think about, and do some research on... and if I could help to make this world a better place in some way, then I feel I should do, just that. I also see that there is such a "guilt" at times, and a burden, even with funeral arrangements... I know that many go through thinking, well I cannot be "cheap" and not have a beautiful casket, or a huge amount of flowers, or have a very nice memorial service... yet when it comes down to it, the person, such as anyone close to you, does not care, more than likely if they are in a "pine" box, like used to be, or in a 10,000 casket, that is going to be in the ground, and certainly of no benefit to that body, for your soul is long gone, nor does it help the ones you leave behind. 

To me, leaving a "legacy" of being a decent, caring human being, that tried their best to love their family, take care of them, and know in your heart, you did everything you could to do the "right" thing, is much more important than a 750.00 flower casket arrangement, that shall wither and be gone within days. Anyway, I've not been here "online" much. And I will be in and out for awhile as their are things to be done... and things for me such as even my neck surgery, that I've put off now almost a year, that I do need to do... so as I make a list of the crucial issues, and line up what is important, and what is not so important, I will be here, some, and then be out and about getting other things done also. I have to get my eyes checked. 

My up close vision has gotten worse, plus I've not had that test due to me being on Plaquenil now in over 2 years, and I should be doing that yearly. So, that is one of the things that I need to do hopefully this week, and then of course the paperwork thing is almost a "hurry up" and then a waiting game. There honestly is no real "hurry" in any of it, other than how quickly myself and my kids want to work on it. Anyway, I may be away for again most of the week. I've got LOTS of painting to do, and getting those hardwood floors done... not sure yet exactly what I am going to do... I don't think completely redoing them is necessary... I think if I can get them cleaned properly, then apply the proper wax, and buff them, I maybe able to get by with that rather than go through the entire ordeal of "sanding, etc... on them..." 

but one day and one step at a time... with the weather in the process of getting HOT, lots of things will have to be done "around the heat"... thank goodness a good portion of things are on the inside, rather than the outside for now.... keep my family in your continued thoughts and prayers... we are all just in still kind of a shock, and somewhat of indecision on some things... yet it seems all of us tend to be on the same page... so that is a good thing... Rhia

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

http://www.alz.org/abam/#goPurple

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

 #GOPURPLE #ENDALZ

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!

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 -

http://www.alzquilt.org/

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. 

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

The "Longest" Day Alzheimer's Awareness Month....

http://www.alz.org/abam/overview.asp

The "Longest" Day Alzheimer's Awareness Month....

"Go Purple" and Pledge to Help Fight Alzheimer's Disease! June is the awareness month for this horrible disease...

Such a critical health issue, that effects so many around the globe. My Grandfather suffered from this tragic disease, and my Grandmother had dementia, which seemed like the beginnings of Alzheimer's also. It was terrible and sad to watch how much this truly changed my Grandfather. Every once in a while, you could see the glimmer in his eyes that he knew myself and my 2 kids. My daughter was only about 2 years old at the time, would crawl up and sit in his lap and put her arms around him! You could tell he knew who she was, and in the next moment, he maybe frightened that "men" were watching through the windows, or rats were coming through the floor... it is a horribly bad situation, that many live with for years and years, both the patient and the family members.


Find on Facebook at:

https://www.facebook.com/actionalz