Being Totally "Beaten down" by Life... or Lack of Quality of Life...

I TRULY feel HORRIBLE for even thinking this, but I am so disgusted, upset, resentful, and feel as if I have been a "prisoner" on a short leash for so long now.... 1st is was my own illnesses, surgeries, and all that came with the Lupus, RA, Sjogren's and so forth. Then, next was Jim's car accident. WE both felt like VICTIMS and felt TIED DOWN due to how severe all of his injuries were, and HOW FOR A LONG WHILE HE WAS UNABLE TO DO ANYTHING... and NOW IT IS THIS NIGHTMARE WITH MY MOM... I am trying to REMEMBER this is NOT her, and it is NOT HER FAULT, BUT TODAY I am just plain and totally "resentful" of what has been thrown in my lap... She talked to me as if I were a low life today, she accused me of "taking stuff" and Moving stuff... and told me "when she got home" some woman has messed up the whole house"... and I asked her "where she had been" and then she says < Well, at home!" and then I say well Mom where are you now? And she said "HELL I don't know"...

wherever you or some other "woman" takes me.... I "knew" sooner or later" due to her personality being much like my Grandfather's, that the "derogatory" part of her personality (for lack at this moment for a better term" would probably "rear its ugly head at me"... and today it did... and she was telling the "aid" today, that "whomever that woman is" she is mean to me... in other words, she has NO CLUE who I was, and furthermore, that I was her daughter, and I have been nothing but busting my ass to help her! She wants to refuse any help, she does not want the aid to help her shower, etc... she thinks she should never have to "shower"...

and I found drinking glasses in drawers in the kitchen, and things all spread around, that were NOT like that when I left yesterday! She does NOT recall getting up when no one is there, and she digs through stuff, and puts stuff where it does not belong, and then accuses the "women" or "woman" who comes by all the time of moving stuff and making a mess.... In less than 4 weeks she lost 6 more pounds! She just will "barely" eat when I am there, and even though the fridge IS FULL of things to eat, she will NOT get anything out and eat it... then she said it had been "days" since anyone came by to check on her... PLUS here I have this awesome opportunity to go to the Conference in Nashville, and again - I am a "prisoner" and can't even leave for a weekend!

 I am so fed up, and I have told her, and the nurse that comes by also told me himself, when the doctor finds out she is not eating, losing more weight than ever, will not get up and help her own self, will not do the work with the PT, and so forth... he is going to want her in a nursing home... I've cut the gas off to the heater, because she tried to turn it on... I am almost ready to turn it off to the stove.... I found out by "watching her" today... that it is NOT that she does NOT want to watch TV, she has no clue how to turn it on, or change channels... because I finally turned it on today, to make sure the new antenna was working correctly, and I could tell her has no clue how to use the remote.... anyway I apologize for seeming "hateful"... but I am "tired of" my own life always "on hold" because of something, either my own health, now this issue with her or whatever it is, comes along and rips out the parts of my own life I want to live.... I am 56 years old, and after already suffering a heart attack at 40, then being told I would NOT survive another, so I moved away to Seattle, in order to get away from whom was "killing me" in a matter of speaking, only to have other illnesses bog me down, surgeries one after the other, then the massive and horrid car accident with Jim, and now this with Mom... I have survived a 2nd MI when I was 50... but you know I would LIKE TO HAVE SOME KIND OF LIFE, before I am TOO old or TOO ILL to enjoy it! Sorry all of you, I am just in a spot of being knocked down that damned mountain, and feeling battered and bruised... and I am not sure I can climb again....

PETITION TO TELL THE CDC AND CONGRESS THEY HAVE IT ALL WRONG ABOUT PAIN MEDICATIONS & WITHDRAWAL GUIDELINES!- PLEASE SIGN!

HELP! anyone in the Ennis TX Area that could help me out with my Mom over a weekend in May? (see info below)

I NEED A BIT OF HELP!!!! Does Anyone know of someone who could help out with an Elderly Woman that has some "Dementia" here in Ennis, for about 4 to 5 days? I have been given a full grant to go to Nashville TN with the Arthritis Foundation later in May from the May 20th thru May 23rd, From a Friday Thru Monday. I just need someone dependable who can go in, check on Mom, make sure she eats something, (I will have things prepared to just warm up) and make sure she is okay, takes her medications, (which I also will have ready for each day in a pill box) - probably about 2 hours or so a day for those 4 to 5 day.  

I have "Home Health Care" but they really do not do much of that type of thing and they come during the week. I JUST found out that I was awarded the "grant" 2 days ago, so I know this is a last minute thing. She lives right here in Ennis, and there is no cleaning, (other than maybe washing a plate) etc... just checking on her, getting her to eat a bit, and giving her an Ensure, and whatever she wants to drink. IF you KNOW of someone PLEASE MESSAGE ME IMMEDIATELY... 


I NEED TO KNOW TODAY, really so I can let the Foundation know so they can make my flight arrangements and so forth. I will post this on other pages also, but it would be awesome if I could find someone to help me out. I had to turn down an opportunity last year due to my husbands severe accident, and this is a rare thing to get this grant and attend... Thanks so much, Rhia (Pam)

Decisions - Of ME Wanting to Attend an Arthritis Conference, Neck Surgery two weeks before, and dealing with my Mom's Dementia and absurd behavior... at times... I need suggestions

My internet has been down most of last night, then I turned my computer back on this AM and I sill did not really have but "off and on" internet until about an hour ago... so I have stuff I have to do for Mom, BUT I NEED SOME ADVICE or some suggestions etc. Mom is of course STILL not the best... and even the "Home Health situation" IS NOT really going well, but because of HER - she does NOT want to cooperate with them, and if she will not allow them to do their jobs, then she will not get better, and I told her that yesterday... so she "acts" like she cannot get up, but I made her walk to the bathroom about 20 steps away from the bedroom yesterday AM...

 THEN she really would not eat much, so I had to go back over the PART TWO EVENINGS, and make sure she eats something... anyway, as you see below, I have this wonderful opportunity to get to go to Nashville to this Conference, and I am so totally elated... I applied for the "Travel award" a couple months ago, & never gave it a thought until I got a phone call last evening. So, that is going to be MAY 20-22nd - Friday thru Monday... and I am so wanting to attend... but I have to figure out a way to get someone to at least check in on Mom from at least Friday afternoon, thru sometimes Monday, one time a day will probably be fine... SO does ANYONE KNOW OF ANY BODY who does this type of thing? If you do I would love to have someone let me know who does, the expense etc... and I am sure that my pups will be taken care of by Samantha my dog sitter.... 

BUT I also have the neck surgery scheduled on May 4th which is just over 2 WEEKS after surgery... of course I will still be in a cervical collar for 6 weeks, BUT the only thing I see is to make sure I get up some, move around, and even wear compression stockings due to blood clots that soon after surgery... that sometimes riding a long ways in a car or in an airplane can bring on... and I apologize for "not talking" much this past over a week. I had promised to call someone and I have just been in such an overwhelming, overwrought, and almost "maddening" place emotionally, that I just cannot make myself talk on the phone at the moment. I really needed to straighten some things out in my own head, and think things through... lots of things happening, and needing to be done... so that is where I stand... any suggestions would be deeply appreciated! Rhia

"A PAIN, CHRONIC PAIN PATIENTS, Legitimate physicians and patients being treated like common street addicts, and THOSE THE Suddenly cannot "fathom" how we "find a way" to move forward even in the worst of pain....

I am SO SICK AND TIRED of LEGITIMATE PEOPLE in CHRONIC PAIN being treated as if we were some kind of Horrible people living on the streets and buying "illegal drugs"... The "stigma" placed on ALL pain Patients, but ESPECIALLY ON WOMEN CHRONIC PAIN PATIENTS, just makes my blood boil! It took ME YEARS of being in at times very severe pain, of which when I FINALLY GOT the proper doctors and diagnosis and had insurance, the evidence was CLEAR!

I have joints that have been falling apart and degenerating since I was in my 20's! I've had numerous surgeries, by the time I was in my early 20's, I had knee surgeries, elbow surgery, shoulder surgery, and was at every type of doctor possible! I went through the "bio-feedback", and the Chiropractors, who finally one of them told me, he would NEVER touch me again due to HARMING ME MORE THAN HELPING! I SPENT YEARS AND YEARS with HORRID MIGRAINES, that began when I was about 18, and for years, I spent having injections in my neck, going to one specialist after the other, trying every medication, that most of them come to find out I should NEVER have been given, such as any type of "ergot", no types of NSAIDS, and all of the "therapy" in the world was never going to help me with the pain....

 I was NOT DEPRESSED and in pain, I WAS IN SEVERE PAIN, and terrified to depression because I feared living like this the rest of my life and how to take care of my family, do my job, go to college, keep a home, and so forth... to have a "quality of life".... it is totally insane what is happening now, and the government needs to keep their noses out of legitimate pain patients lives and legitimate doctors that are doing everything "by the book" to help their patients...

 in fact my Mom today said, when I asked her if there was anything else she needed before I left (SHE REFUSED ALL OF HER PT, WOULD NOT LET THE NURSE COME OVER AND WOULD NOT ALLOW THE AID TO COME AND GIVE HER A SHOWER AND CHANGE HER SHEETS... anyway, she said, can't you "get rid" of this pain? She very "recently" within the last 7 months or so began to have lumbar spinal pain which is from arthritis and age, and just what the spine does as you get older, especially since she never took care of herself, never exercised, never tried to do a thing to keep her body limber etc... even after watching what I went through all those years.. And I told her exactly what any DOCTOR WOULD TELL HER... YOU NEVER EVER get RID OF ALL OF THE CHRONIC PAIN... you always learn to LIVE WITH SOME of it... and LAYING IN BED, NOT EATING, NOT TAKING CARE OF YOURSELF, and not allowing the therapist to help her gain some strength back in her legs, and back and body, just makes the pain WORSE! That is SHE WILL NOT HELP HERSELF,

 THEN I NOR ANYONE CAN HELP HER... I am to the point THAT I HAVE BUSTED MY BUTT, for 10 years AND THE LAST 7 MONTHS HAS BEEN MORTAL HELL ON ME... and I need my CERVICAL NECK SURGERY, THAT I HAVE PUT OFF 3 TIMES NOW DUE TO HER ISSUES, but I CANNOT ANY LONGER NOT TAKE CARE OF ME... and I AM NOT going to work my fingers to the bone to get her help, to do everything I can, and she lay there and not want any of it... she will NEVER get any better, if she herself does NOT want to..... AND USED TO, SHE WOULD OFTEN SAY TO ME, "HOW DO YOU STAND THE PAIN"?   Now she gripes, whines and fusses about how bad her back hurts, BUT never thinks about how much this is effecting me physically, mentally and emotionally... I am getting fed up... and if all she is going to do is lay around, and want someone to do everything for her, then she needs to either hire a FULL TIME MAID or something... because I am getting to the place it is harming my own health....


THIS BELOW JUST BURNS ME UP!!!!

https://www.alec.org/model-policy/prescription-drug-monitoring-act/

A Question We Often Avoid - Why do "Chronic Pain Patients Commit Suicide?

This is a subject we often do NOT want to speak about. But, it happens daily in our lives, for all kinds of reasons... this U-Tube Video is a gentleman speaking about a questions asked to him in a group setting about "Why Chronic Pain Patients Kill Themselves?" 

I watched the video and what he says is true... there can be all kinds of reasons, but for anyone who had been "healthy and stable", and suddenly something comes into play that takes away all "hope" then those are people that can suddenly decide they no longer can take another day, due to the pain, there is no "hope" for something better in the future and so forth... so I wanted to share this with all of you today... 

https://www.youtube.com/watch?v=QpRr-A3JKyo

The #MIT 2016 Medical Grand "Hack-A-Thon & a One Minute Video of What YOU FEEL May Help to Change The World of Health from Today - April 29th thru May 1st 2016!

Here is the initial page that tells you what type of "video" they are looking for. It needs to be of course about something in the medical world, that you feel would be of a HUGE Benefit to "change some course of action in our realms of the medical issues today". Only a minute long, and it could be exactly what may bring great results and help to move forward a positive force in the Medical World!

Here are the links:

http://www.2016grandhack.com/

Here is the U-Tube Page:

https://www.youtube.com/channel/UCrzUtRGswcsYvjvYn-hxSYw

Here is a snippet of information from the main page to help you understand what they are looking for! This could be FUN! I just have to make sure I have my "face-on" LOL... in other words look "okay for in front of my camera" before recording it!

Let's see how many can put "their face on in the realms of Medicine" and make some incredible changes. After all PATIENTS MORE THAN ANYONE UNDERSTAND WHAT CAN CHANGE TO MAKE THINGS BETTER! 

 

 

 

"New Way" of Asking about a Patient's "Pain Level"!

I have often wondered why with all of the medical knowledge and technology we have, why someone has not invented a "new type" of pain scale.

This "1" to "10" is so totally "not really" giving anyone a true look at what a patient's pain truly is... I mean what is a "3" to someone, versus another it maybe an "8"?

If there were another way to "give someone an example of what those numbers actually meant" then I feel our medical professionals would also have a much better understanding of what that individuals pain level is. In fact just this week, Home Health Care's Nurse that came over to see my Mom for the 1st time asked her "pain level". Well, 1st of all, my Mom just over the past 6 months really began to have "serious daily chronic pain". Up until that time, she was not even sure what that "1 to 10" was. Sure, it is on the walls at the doctor's offices, hospitals and you are always asked, BUT still for someone especially in chronic pain, it can be baffling to describe what that means to that person,

So, I read an article just this week and it had a posting of a brand new way, of taking that 1 to 10 and putting "real life" examples to it, that most can relate to. Here is the chart below:

This was put out by the American Chronic Pain Association and is definitely a much better way of people stating what their pain level is, and what pain level "they" can "live with"....

Plus those with chronic pain, really do go through most of these examples throughout any one day, week, month, and year. In one day, there are times that I may feel like a "6".... but within hours, that may change for a number of reasons, and go to a "2".... and I am willing to bet MOST of us with all these different reasons and types of Chronic Pain will feel the same. I am actually going to print this, and from now on, take it to any office visit etc.... when pain needs to be described. I feel by showing this to my health care workers, nurses, doctors and such, this will make much more sense than me saying I have a "9" but I can live with a "3"... well a "3" under most circumstances is TOO MUCH PAIN to have to bear, especially by the older way of thinking... and an 8 things such as childbirth, kidney stones, severe days of RA/Lupus flares and Arthritis, and depending on what I have done or not done can make that happen, yet within a day or two, I can be at a 4.... again thougH that id NOT AN ACCEPTABLE AMOUNT OF PAIN TO LIVE WITH DAILY! IF CHRONIC DAILY PAIN, PUTS YOU IN YOUR HOME, UNABLE TO DO MOST OF YOUR ACTIVITIES, THAT IS TOO MUCH PAIN TO HAVE TO LIVE WITH!


I Hope that this "New Chart" will give you a better example as how to describe "your own pain" to your doctors. I know for me, it is definitely a better system than the old way!

The Latest Addition of my Saturday Newspaper All Things from Chronic Pain to AAI illnesses, Lupus, and so much more.... great stories today!

Latest Saturday Addition of My Newspaper "Life with Chronic Pain and AAASD's"'' LOTS of great articles from Arthritis, to AI illnesses, including Lupus Awareness Month coming up, Chronic Pain Patients speaking out about the medications they need for a quality of life and even so much more! Check it out, please forward it, and sign up to get the updates daily!  Thanks to all of you, Rhia Steele "All things Autoimmune"​



http://paper.li/ravishingrhia/1438808814?edition_id=1522ce40-0766-11e6-8e8c-0cc47a0d15fd

Update of My Daily Newspaper - and also an "Update" on just how Insane" a disease like Dementia /Alzheimer's Truly is.....

http://paper.li/ravishingrhia/1438808814#!headlines

It really DOES for the most part have many articles and information relating to our AI, RA,FM,Chronic Pain, Lupus and so forth, because am able to "pick and choose" what types of information is printed in it daily. So, I have chosen the specifics of what I know many here are dealing with. 


Now I have added "Dementia/Alzheimer's" to the "pot" of things that bring in articles. Never would I have ever in my life thought that about 9 months ago, my own Mom would go from doing her own grocery shopping, driving to church, doing her own house work, cooking, and I just helped with other things... to NOW... she at times does NOT even know WHO I AM, nor that she is in "our home". She cannot go and fix much to eat, I have to make sure she eats, drinks and takes her medications properly. She cannot shower or bathe herself, she cannot clean her house... and she has not driven her car in over 2 months maybe longer, nor been to church... she cannot "operate" her oven, stove, washer or dryer, and honestly the phone (regular home phone) she at times does not know how to use it... she stays in bed more than not, and the list just goes on and on and on... of what in such a short amount of time, not just "mentally" but physically incapacitated these illnesses can be... 

I am of the belief she has a "certain" type that unlike many, starts gradually... and for a couple of years there were "signs" but to go down hill so quickly. It is a "fast type" of dementia called Creutzfeldt-Jakob Disease .... honestly I hope and PRAY I AM WRONG, because usually it comes quickly, and they pass away pretty soon for the most part, and I am wanting my Mom to go with me like we did just about 4 MONTHS ago to the Casino overnight!!!! She "cut up" her players cards and said she would never be able to again... plus she went from no cane and no walker, to a cane, and within weeks to a walker... and we have to watch her, she now has problems with balance and is a huge fall risk... she has not clue how to pay a bill, she does not even go outside, check the mail, or anything, but due to her falling right now it is best she does not go out... she has several steps down in the front to go down... 

I am totally exhausted, worn out, drained, and in almost a "state of shock"r" for the lack of a better term right now, mentally, physically and emotionally now... I have to go over every day and really should be there more, but I have of course my own home, my pups, and me to take care of also.... WE NEVER KNOW!