New things to come...

 I'm redoing one of my FB pages, that has more to do with Lupus, RA & other Autoimmune Illnesses.

https://www.facebook.com/ramblingsofaseasonedsoul

I will also be getting a new Instagram account. I'll give you that once I do it.

Animal Pain Awareness Month! Our Pets have Pain too!

 Our Animals and their Pain is REAL ALSO!

We even as pet owners, don't "think" that one of our fur-babies" might be in pain. In fact my little terrier Peanut, "suddenly" started holding a back foot up, and he can't stand to put it to the ground. I was in the shower, and before I got in he was fine. But, when I came out int the living room, I noticed he was having a hard time getting up.... 

I went to him and asked him if his foot or leg hurt, but I believe it's a nail he probably hung while I was in the shower, and him and Bella were playing and he probably pulled a nail to the quick... They will NOT behave for me, if I try myself to cut them, and Bella keeps her front ones "groomed herself.. but taking them to the Vet is also a pain, they are just nuts in the car, and they are like two bulls in a china closet to get them out, in the car, out at the Vet, inside, and then to the car again, and home... But. when I saw this article in my newspaper today, it dawned on me, pets show :pain" in different ways"....

 I can tell which one of mine maybe hurting or not feeling well, but the other acts completely different. Anyway, a reminder to keep an eye out for a limp, or licking a paw, or Bells "whines" and mopes .... He is better today... I am glad. I thought I may have to take him to the doctor, and I FINALLY JUST GOT TO GET THE LAB WORK DONE YESTERDAY!!! Just 2 or 3 weeks LATE! I have felt like heck, this weather is really effecting my joints etc badly

https://ivapm.org/animal-pain-awareness-month/

A COMMENTARY, AND THE TRUTH FACE TO FACE WITH PATIENTS SUFFERING LEGITIMATE PAIN, & WHAT MIGHT HAPPEN IF THEY CAN NO LONGER GET THEIR MEDICATIONS...

IF this does not hit the "NAIL ON THE HEAD" ABOUT the truth of chronic pain patients, and those of us, who suffer daily, and what might happen if we no longer were able to have relief with our medications.

 

Most of us would gladly throw away pain medications, if WE WERE NOT IN HORRIBLY, CHRONIC AND OFTEN DAILY SEVERE PAIN!

 

 

 

http://globalnews.ca/news/3571142/commentary-a-deeply-disturbing-email-begins-to-tell-the-opioid-story-for-chronic-pain-patients/

By Roy Green Host, Corus Radio Network  Global News 

 

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.... 

Updated Information on My Daily Newspaper, adding a new title and more information including chronic pain, and other diseases...

Notice I have change my Daily Newspaper to include in the title Chronic Pain. I feel I need to make sure everyone does know this paper published and updated at least twice daily includes not just AI illnesses, but much information about all aspects of Chronic Pain, of Alzheimer's, of Dementia(s), and how each and every one of these can totally destroy a "normal" life... and it can happen within a "breath's space"... as I always say...

My last months now for at least 6 or more honestly, have been more than a terror daily... my "mountain top" has not been stood upon in a long while, and between my own chronic severe pain issues, my Mom's almost "overnight" development of some type of very severe "Dementia", where she is basically unable to take care of herself at all... and even yesterday was more or less bedridden, and also complaining of severe pain that began about 4 months ago and is progressing... my life has been turned upside down, and inside out even more than before all of that began.


I desperately need two spinal surgeries, my neck, which I have again had to "reschedule". It should have been done on April 4th, but due to Mom, and not having things in place for her, since I will basically be unable to do much of anything for several weeks, now I have it scheduled for May 4th... and my lower lumbar spine is progressing to get worse... these past several nights and mornings have almost taken me to the sofa due to the severity of pain once again, the weather, humidity, and things I have had to do, causing me all types of issues.... so I want all of you to know this just not just "AI" illnesses but so much more....

Daily NewsPaper- Life with AI, Chronic Pain & So Much More

Setting The New Year Tone as I Deal With RA, Lupus, Sjogren's, Trying to Complete a 3rd book, Life, Family and so much more...

Every Year so many of us have a "List to Live By"... for the New Year. Some call it a list of "resolutions", "Changes", a new way, a different attitude, motivation for making things different, making what you want in life happen... Whatever you "call" it... we try to set the "tone" for our New Year.

Whether "chronically ill" or not... each of us want things to "change". Now, many of us may be completely satisfied with our life "as is"... but human nature gives us this innate intuition to never stand stagnant, to always want to evolve, to make our mark on the world, or at least our own home and community. As a whole, although when you hear the news it does not sound like it, I still feel "human nature" basically wants to "do well"... to help, to be that change maker...

As I have prodded through these past 7, 8, 9 or more years of chronic illness and chronic pain, I've noticed that it seems for the majority of us that are chronically ill, whether it is an Autoimmune Illness, Heart Disease, Cancer, or any number of diseases, syndromes and/or illnesses "we" as a whole tend to try even harder to "change" what that disease is doing not just to "our bodies and lives" but to all the others we see on a daily basis suffering from the very same illnesses. We tend to be more a part of the "change makers", whether that means a local community awareness, or a National Campaign and being an "Ambassador", Volunteer, Activist, a "voice" such as helping so many of our non-profits, such as The Arthritis Foundation, The Cancer Society, The American Heart Association, Lupus Foundation, The Pain Foundation, and the many, many, charities and organizations that "go to bat" to fight not only locally, in our states, but nationally to make awareness known within our Governmental Bodies, to get finances for more research, the race for a cure, for answers as to "why" some of us suffer so badly from such horrid illnesses, what causes them, how to treat them without destroying a patients life, and how to give people back their quality of daily living!

So, when our chronic illness and/or oain issues bring us to the place we no longer can "work" our jobs, or do many things we once could do, we find ourselves seeking a way to help STOP these diseases from ruining more lives in the future. With the technology, and how we have evolved globally, with a few key strokes, we can contact our state, our county, our city, and our National Government Officials. We can provide all types of very usual assistance without leaving our homes to "make that difference" we so want to make in life. I know some people that probably spend more hours a day now as a volunteer, activist, etc... than they did actually working a 9 to 5 job that nearly killed them... but we can "take off" for a week if we are ill, or work an hour a day, or a few hours a month.... however much "we" want to put into assisting these foundations, is so appreciated. And many of us, like myself have been even honored and rewarded by being sent to Washington DC to stand on Capitol Hill and tell our stories! So, activism, can be and is such a rewarding part of a chronically ill person's life. We feel we are "contributing" even though we may not be able to work hours a day, or leave our homes... we "make a difference"... and not even spend a penny... but give of ourselves and our time... which is definitely valuable... sometimes more than money... the value of "our time"....

I had been looking on Twitter a bit ago, and there was a great idea that I decided to not only to share, but to do. Take an empty jar, and each "good thing" that happens within the New Year, jot it down on a small piece of paper and put it in the jar. Then in the start of the next New Year, get those out and read them. As I said, all too often we "recall" all of the crappy, the bad stuff, that happens within a years time, yet we don't remember those "good moments" and maybe they are "small" but memorable. Then see just how many have filled that jar from that year before. I have already been able to write down 3 or 4 things and put in the jar, and this is the middle of January! Maybe I will need 2 jars to "hold" onto those good moments... those moments that help to make the bad ones seem not so bad.

So, the "title" of this post, is a bit deceiving in some ways. I gave the impression this was going to me more about my own "revelations" for the New Year, and the "tone" of how I "want" my year to be for 2016. I've never been one to set expectations to high, but I do try to give myself "goals" to achieve... yet I have also had to learn that when you have illnesses such as Lupus, RA, Sjogren's.... and so forth... those things you "want to achieve" may get put on the back burner, for those times you are in a "flare", or you are having surgery, or sick, or going to the doctors... there can be all kinds of things that interfere with those "good intentions"... and it is not that you may not achieve them... just not in the time frame you thought you would. I had wanted to be a published author for 20 years plus, and then was with two books within less than a year between them! My 3rd book, has been sitting here mainly completed on my computer, but needing to be put in some type of order now for gosh 3, 4 or more years. But, life and illness... have had to come first... thus the book WILL GET PUBLISHED, but I no longer "pressure" myself... Due to things beyond my control over the last almost 3 years, I began getting it together, then had to leave it... now it will take me weeks to even get back into where I am, what I have in it, and how I want to continue... and I will get there... but I have to feel well enough "physically" to be able to sit at the computer several hours at a time, hopefully with little interruption for weeks, at least 2 or 3... or I will never be able to "delve" into where I am, and where I want to go forward.... so I may not be able to do as much as I want on it, until I have the cervical neck surgery... I can't sit very long at the computer typing right now because of that disc... when it presses down on the nerves, and I have pain in my shoulders and down my arms into my thumbs... it makes it very difficult to "find my voice" to write...

It is different with my blog... I can write a bit, get up, do a few things, and come back to "finish" the post...

But, the "tone" for my 2016 is to try my best to get as far on the 3rd book as I can to prepare for it to be published. I also need to get myself back into "physical shape" and I mean back to walking when it warms up, taking the dogs out walking, and getting out of the house... but I also face at least the one surgery... and maybe two this year... my lower lumbar and sacral spine gives me hell when I try and sit for very long also... and after Friday's ordeal of driving and doctors in Dallas all day long, I have suffered with a great deal of back and side pain... hell I've wondered if I have another kidney stone, the pain has been so bad off and on...

So, the "tone" again is to do as much as I can personally to my home, bless it's heart it needs so much work, and myself... and try to "enjoy" each day whether ill on the sofa, sitting here at the computer writing, or online...walking my pups... walking myself... and hopefully spending several times this year for a day or overnight stay at Winstar! Gosh how I miss that Casino! I walk in and the world melts away, at least for that time you are there...

So, take time to "set your tone" for 2016.... make yourself a "good moments" jar... and in 2017 (when I get to trade in my Prius for a New Model) see how many of those truly make you smile.....