LUPUS AWARENESS MONTH 2016!

LUPUS AWARENESS MONTHS 2016!

 

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Please Share your experiences and information this month on Social Media about Lupus, about new medications, new clinical trials, and all of the new ideas out there about Lupus!

Trying to Contend with a Mom with Dementia and my own Body reeking Havoc over me... ( OH and looking into NURSING HOMES)

IT has been another insane WEEK for me! Mom would NOT really participate in any Physical Therapy, basically did not eat for a couple of days, would NOT get up, would not "speak" when I asked her what she wanted to eat, etc.... and FINALLY YESTERDAY, when she realized she HAD NOT TAKEN ANY MEDICATION for a couple of days, and HER BACK WAS HURTING BADLY, and that she needed to try and get up, let the aid give her a shower, change her sheets, finally woke up enough to eat, take her medications and so forth, so I got all of that taken care of, and I have been there every day, and several days I went twice. But, as I told her, when she lays there, and just ignores me after I have asked her about eating and so on, 4, 5, 6 times, and I continue to get no answer, (she is awake and hears me) she chooses to just not answer or she just says NO,

 I do not want anything.... I finally give up, tell her I need to get home to do my own house work, and my own things and I leave. Well, I got everything done, and said something to her, and she said, "Well, my daughter" has the same problems.. so once again she had NO CLUE who I was... and this "woman" she keeps talking about coming over is ME! She just does not know anymore most of the time that she is even at her own home, she does not know whether it is spring, summer,fall, winter... she has no clue what day it is, what month it is, refused to go to her heart doctor's appt yesterday, refuses to go see her own doctor, she claims she is not "strong enough" even with a walker to get there... 

which NO she is NOT because she stays in the bed most of the time, not moving, not eating, not drinking anything again but diet drinks... and some Ensure... and ALL of us have tried to get her to understand the pain is worse when she continues to not get up, move around, she is weak from laying there, not eating, not taking her medications unless I stand there and force her practically, and it is taking its toll on me in every way.... but I have just had to come to the place this week to realize that is NOT my "MOM" there, but just a "shell" of the person my Mom once was... 

her mind, and all is "not my own Mother anymore" and that is very difficult to deal with. I had to forego my neck surgery, which now my lumbar spine is getting worse, and even sitting here is causing my hips and legs to hurt and my feet to go to sleep from the nerve issues. My pain level just as I told her is HORRIBLE BUT I still HAVE TO GET UP, NO MATTER HOW BADLY IT HURTS AND KEEP MOVING! I cannot have the luxury of lying around, and doing "nothing"..... whom else will do it if I don't? Anyway, I "think" the main woman to evaluate her is supposed to be out today, but I have NO CLUE for sure if or when she is coming. So, I am trying to find that out. I am not rushing over there early this morning if no one is coming, because Mom will NOT be up to even know I am there if I go too early..... so continue to keep your prayers and thoughts coming... Love all of you, Rhia

BY THE WAY, I found out, that a "nursing home" can cost as much as 4160.00 A DAY after the 1st 20 days, so that means $12,000.00 a MONTH for someone to be in a nursing home! how Insane is that??????

WORLD ASTHMA DAY! MAY 3RD!

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Did you know that May 3rd is #WorldAsthmaDay? Take action to help the world breathe easier. Join the conversation: #AsthmaChat #cureclick

Hopping Over the Hurdles of a small town, with no shuttle to Dallas to get there for surgery more on the Horrors of Dementia & A Parent

This may sound like a ridiculous question to many people, but what do people do like myself, that live in a small town, and have no really "close" relatives, and need to be taken to somewhere like Dallas to have surgery, or a procedure done, yet they don't have a "spouse", or anyone they can call upon to do so? Sure, if I lived in Dallas, I could probably find some type of shuttle service, or at the very least take a Taxi, etc.... but unless I am just not informed, I gather there is no type of shuttle here in our community that does that type of thing? So, are there people out there that will do something such as that, drive a person for a day surgery, or for a test of some type, or to a doctors office, that for some reason they are not able to drive themselves? We must have someone around here that does that and charges a certain amount to take you and bring you back home. My son can't get off work, due to him having been off himself for an arm injury so he can't get off this next week on Wednesday, of course my daughter is 8 hours away, my Mom, well even if she was OKAY, Mom could not even drive me across town when I had double pneumonia a couple of years ago to Urgent Care...

I was "too sick" to drive alone, so she came over, and I had to drive us there, and then drive myself back home, and I have no other "relatives" or people that can do something such as that. I guess it would be something someone in our area should consider. Because there has to be more people than myself that wind up in this situation. And of course even if I "felt like" I could drive home, there is no way, no how my surgeon would ever, every agree to that, especially it being neck surgery, and I will have a cervical collar on... Any thoughts from any of you? I know there is "Uber" in the larger cities, but I am sure we don't have anyone here that would drive anyone from Ennis to Dallas and then back to Ennis.... I've just about taken all I can...

I've put this surgery off, and thus that means my lower surgery has been put off also, and now my fingers are numb all the time, I can barely turn my head, and my lower back and legs continue to hurt like hell... I guess I am going to have to go and have my pain pump medication increased, which I did not want to do.... and then like today, I go to the market for Mom, I take food over for her to choose what she can eat, well, she never said a word, just mumbled a couple of times, "nothing" I guess it what she said... so I put stuff up, cleaned out the fridge, took out the trash, put up the clothes in the dryer, happened to have ran into the gentleman that does my Mom's lawn work, and found out she did no pay him from last time, so I told him to go ahead and cut the yard again, and I had to pay him for that... then I had to fold laundry, get her medications together for the next week, pick up her scripts from the pharmacy, clean up what she had left out give her a new glass of something to drink, take her an Ensure that was cold, and by that time, I went in 3 or 4 times, and she never said a word...

I had asked like 3 or 4 times about eating... so when I finished, I gathered up my stuff, and just came home. I am totally exhausted, and I got to thinking, I am a main, a cook, a grocery shopper, a car detailer, a trash person, I do laundry, I "exterminate" for ants, I vacuum, dust, sweep, fix her meds, make sure she takes her meds ... and the list just goes on and on,.. a bill payer... an accountant... chief, cook and bottle washer... and you know what... I am totally exhausted.... so I am headed to the sofa to watch a movie, and then will get dinner ready here in a bit... I am just so disenchanted with it all... and I "watch" and see everyone else "living their lives"... and mine seems to "not be of my own"....


Alas, I am just going to have to postpone it again, and I know my Orthopedics Surgeon's office is going to throw a fit. I've had to postpone it twice myself already, and he postponed it once due to some thing that came up for him. So, they also at times suddenly postpone at the last minute. But, I am just going to have to let his assistant know that this time rather than trying to "reschedule" in a month or two weeks etc... to wait, and I will call them back to reschedule once I can "set in stone" find someone to take me to have the surgery and bring me back. I do not want to do this again. It is difficult on them, and it is difficult on me, to feel "rushed and in a panic trying to find someone"...I even looked up in our area some type of "shuttle" service that may take me up there. I know my neighbor across the street goes in a shuttle frequently, but she is on dialysis, and I think they may take her to Dallas, but just a certain area. 

The only one here I can find, just does a shuttle in our county, and if I lived up in DeSoto or in that area, then the Star Transit could take me, but that is about 20 miles away... Anyway, I am going to have to make some very difficult decisions this week about Mother anyway. I am sick this morning, and the weather here is horrible. We were supposed to be "sunny" and no chance of rain... LOL... what a joke, the thunder and lightening woke me up around 6AM, and it is raining, and we have an electrical storm over us still. It is just a terrible day out there right now... I had to get the trash out to the curb and I HATE LIGHTENING... it struck my car one year while we were driving in an unexpected storm on a major highway, and it hit the antenna of our car, knocked it off and it literally FLEW over an 18 wheel tractor trailer, and it "stopped" the brain of my car! We were in a brand new car with dealer plates still on it! 

But it "reset" itself after about 15 minutes or so on the side of the road, but that was one of those "spring storms" that came up so suddenly we did not even have time to find shelter... we were fortunate enough to get under on overpass and had a truck driver in front of us and in back of us... and a tornado literally passed within a quarter mile or less right in front of us over the highway!!!! Cars were stopped for miles on both sides of I-35! It was a total nightmare! So, I am not a "fan" of any type of electrical storm or hail. I've had a roof ruined by that, windows knocked out in fact I still have a window that desperately needs to be replaced because it is just barely holding in with cardboard and duct tape now! But, I need someone to help hold the pane in place so I can get the "pins" in it to hold the glass in so I can put the glazing around it.... so again, until I can find someone to help, I am "SOL" as the saying goes....

 I was so totally upset over this past weekend, between Mom and some of the crap she pulled and said to me, and between not having any way to get to have my surgery, and my neck is getting worse... yesterday my fingers went to "sleep" on both hands and were burning and stinging, then by the time I got through the market, and got what I needed and picked up Mom's stuff, hauled it in her house, put that away, folded clothes and done everything there, put all of her trash out etc... then came home and had to put all of my stuff up, my hips and legs hurt so badly I wanted to cry! Now this morning, I woke up with a sore throat, and my glands are swollen under my neck worse on the left side... so I hope I don't have another infection...

I went over there this morning. She was "up" standing in her living room. No cane, no walker, and no emergency cell phone on her... so if she fell, there would be no way for her to contact me or anyone. So, I asked her what she was doing... and she mumbled "straightening" things up... and I just commented, well Mom everything should be pretty well straight.Then I went through the "laundry" list of things I did. I asked her if she had eaten... her reply of course was "No"... I went to put up some drinks I had gotten her, and there were items again in the fridge that did not belong, and she was just "fiddling" around with things, not really doing anything. 

I went and got her medication, put it in a small little cup, laid it on the table, and mentioned she did not eat yesterday and she replied, NO one brought me anything!...Okay, there I had been there the day before, brought in all of the groceries, asked her numerous times to eat or what she wanted, and I either got no reply or just a "no"... so I explained that I did come, and she did not want to eat, and she said I don't recall anyone being here... and I could tell, she was in "one of those moods"... so I finished putting up the drinks, and told her, her medications were on the table... and I said I see you must have things under control, so I am going home... and she looked at me and said. YOU have NO HOME!!

 I TURNED and replied Well, I guess I do, and that is exactly where I am headed... call me if you need anything. So, I shut the door and left. I am not feeling well today, I woke up with swollen glands under my neck, and a sore throat and the weather is cool today, and I was not about to stand there and allow her to "belittle" all of what I've done, since she just cannot recall what those things are... I called off my surgery and will reschedule a bit later in a month or so, once some things are not so messed up... but for now, as I told my doctor's assistant, until I can get a firm "way" there and back to Dallas for the surgery, and get someone to watch after Mom or see where all of this goes in the coming weeks, I did not want to reschedule, and then find out something is amiss again... Anyway, I am headed for the sofa... I just don't feel very well, and I just need the rest. I sure as heck cannot afford to come down with a "flare" or some type of infection right now.

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