UPDATES ON MOM, the Dementia, Home Health Care, MY CERVICAL NECK SURGERY COMING APRIL 13TH, and EVERYTHING ELSE.....

I wished my "mind" would rest, but I just cannot stop thinking about what ALL has to be done. There is so much to get done for Mom, but also my own stuff, it seems endless. To add to that, I have not felt the best myself, my night terrors are just horrible, and I have had a headache from hell now for at least two days. I know my doctor told me I had a sinus infection last time I was in, and he put me on antibiotics, but at night I wake up so stopped up I cannot breathe. I have to use some nasal spray, and then I can try and get some sleep, but I feel like I am suffocating. I know part of it is this stupid weather.... 

 

we have had NO winter, and now one day it is almost too hot, then the next, like yesterday and even today, it is very cool... it is sunny, but we have had rain for a couple of days now, so my back lawn HAS to be mowed before it gets too tall for me to do it with my new mower. But, our mornings the dew is so heavy it is like rain. So, there is no way to mow it, until later in the afternoon once it dries out.,.

 

I have to go and get Mom a microwave today, and I need a few things, so I have to go do that first, and then I guess I will try and get this back yard mowed... I am also trying to knock down some of the taller grass on my back lot before the city starts griping and then I will have to pay someone to come in with a tractor to mow it... I had gotten some of it down and then sprayed the weed killer on the weeds, so I had it kind of coming under control. Then of course it rained, and without the sun, now it is getting tall again, and I still have not had time to get the people that may get these bees out of that old piece of bus back there... so it will be hard to find anyone who will help me try and get that back "forty" as I call it cleared and cleaned up... I have so many dead trees, and limbs and the grass now is getting too tall, plus my neighbor never got all of his crap from the goats and chickens he had back there before he had to take the goats somewhere else... it was so nice with them back there they kept the grass, weeds and even all of the trees trimmed for me...LOL.. 

 

They would stand on ther back legs and reach up into the trees as far as they could and eat the leaves out of them, so even the trees stayed nice and trimmed back there... anyway, I hae been trying to do a couple of things here I needed to do at home, and now I am going to take my meds, eat some cereal, get dressed and go and see if I can get that microwave and pick up the other stuff I need... then I have to go over to Mom's and check on her... get her medications reorganized, and see how she is doing... she was in bed again yesterday when I went over, and I gave her some of her pain medication for her back, and got her the phone, some water, put some Ensure on the nightstand, and left everything that she needed and came home. I have not talked to her this morning yet but I had to apply for a new insurance card, SS card and her Medicare Card... somewhere down the way she LOST those in the past week or so... I cannot find them anywhere, so I got that done this morning... but I still have to go to the post office, with the form I filled out and her Drivers License and Birth Certificate to get her SS card... I thought I maybe able to do it online, and could everything else, but not the SS card yet... in some states you can order it online now, but TX is not one of them yet... anyway, thanks all of you... I need to get going... I HOPE TO BE A BIT MORE SETTLED TOMORROW SO I CAN CATCH UP HERE, ON MY BLOG, MY NEWSPAPER ETC...

 

I am so far behind on my advocacy work, blog, and everything... I am just frustrated I cannot find time to do my own stuff... and I am supposed to have surgery on my neck on April 13th!!!! I just do not know if I will be able to... if we get HOME HEALTH coming out for MOM by then, MAYBE I CAN HAVE THE SURGERY, but I MYSelF MAY NEED HOME HEALTH HELP AFTER THE SURGERY FOR A WEEK OR SO... I will be in a NECK BRACE 6 WEEKS! And I won't be able to LIFT, BEND ETC... until that begins to "heal" which takes at least 6 weeks for it to begin those BONE GRAFTS TO BEGIN TO ATTACH TO ALL OF THE HARDWARE IN THERE... OMG YOU SHOULD SEE ALL OF THE STUFF HE TOLD THE INSURANCE COMPANY HE HAS TO DO TO MY NECK... HE HAS TO TAKE OUT THE OTHER HARDWARE, AND TRY AND FUSE THIS OTHER DISC, THEN PUT IN NEW HARDWARE TO HOLD ALL OF IT IN PLACE... so this is really much more complicated than my 1st one.... plus my lumbar spine is giving me fits also, so I know I face having that surgery also... Hugs to all of you, Rhia Steele "All things Autoimmune"

What A NIGHTMARE FOR CHRONIC PAIN PATIENTS, FAMILIES, CARETAKERS... THE CDC, TRYING TO GET CONGRESS INVOLVED & Just how Insane all of this is!

HAVE ANY of YOU that are in CHRONIC PAIN or are interested in CHRONIC PAIN ISSUES due to being a caretaker, or having a loved one that deals with CHRONIC PAIN SEEN THIS????!!! Talk about ONE GARBLED BUNCH OF bureaucratic RED TAPE GIBBERISH, THAT BY THE WAY THE CDC IF YOU DO NOT ALREADY KNOW IS getting CONGRESS in on all of this, and CONGRESS could PASS LAWS OR BILLS that MAY INHIBIT OUR PHYSICIANS and how they treat PATIENTS!!!! The GOVERNMENT SHOULD HAVE NO SAY in how our physicians treat patients with ANYTHING!!!

I was just blown away by this... I have read all of the other things going on but when I FOUND THIS, it made me so upset and so mad, I am definitely going to write to my Congressmen and Women and let them know exactly how I feel about this. I am watching MY OWN Pain Doctor who has been seeing me for almost 9 T+YEARS and has NEVER hesitated to do what was necessary to keep my chronic pain level as low as we could so I could function in a daily world, take care of my home, my MOM, and have some "quality of life". Yet NOW I have noticed SUDDENLY he seems HESITANT or like he is upping my "pain pump" meds very slowly after me having the pump since 2010!!! He replaced it on Dec 29th, 2015 after it had a motor stall, and he has yet to get my medication level back up to where it was.



NOW, I WILL SAY my pain seems to be a "bit better" since I have been on the Minocycline for the RA/Lupus. It has been about 3 or 4 months and since we are doing the pump meds slower in upping the doses, I have noticed it could be I may not need to have the pump set as high as it had been which is awesome! BUT, I also am concerned deeply about his "manner" about it all now. Suddenly, since this CDC mess started even he seems like he is being even more overly cautious about the medications and how much I need.

Now, he is very willing to up it more even next week, if I am still not at a comfortable enough level, so I can say he is not giving me any issues such as that, but it is just what he says, or more "what he is NOT saying" that really has me concerned. So, I wanted to post this, and I will put it up on my blog, and my other Facebook pages, and I am going to try and have this as an article on my newspaper (which by the way, will be "linked in" with my blog soon)... but I just almost fell out of my chair when I began to try and wade through this ridiculous mess, and see what the CDC is doing... and they are "lumping" people together... for instance, if someone had been on a prescription pain medication THEN went to something such as heroin, rather than say that MANY of them get those "prescriptions medications" off the streets NOT FROM DOCTORS!


So, it makes it sound like MANY more get scripts and then go to heroin from their physicians and that is just wrong! If they got down to the line of whom gets "illegal prescriptions off the streets" then decides to go to heroin, due to it being cheaper etc... those people should NOT be COUNTED into those who go to illegal drugs after taking prescriptions from doctors. So, their "numbers" are "skewed" as to those types of facts. So, just coming up and saying "so many thousands" go to illegal drugs after opioids that are "legal" is not correct.

And are they taking into consideration the number of those who are in "chronic severe unrelenting pain" who cannot get help from doctors, that decide to commit suicide? I have had over the years several people ask me directly, How do you live and try and have a life with that much chronic daily pain? Then They add" I believe" I may just jump off a bridge, or kill myself before I could live my life like that!?" ALL of us NEED to write our Congressional Leaders, get our physicians involved, get our family members, friends, those who have chronic pain, and know they would not have a life or a quality of life without the proper medications.

I DO NOT believe in "quacks" that just hand out medications of any type just to get people into their offices for money! Those that do that to rip off Medicare, Medicaid, Insurance Companies and "their patients" should be removed from being a physician. I also do not believe that some "so-called" pain management clinics are "truly" what they say they are. When I walk in to a physicians office, that is "supposed" to be a Pain Clinic, and everywhere you see a sign stating "We do not prescribe pain medications" to me that is a red flag warning that something is wrong!


Then DO NOT call your "clinic" a "pain management clinic" if you are not offering ALL TYPES of pain management, whether it be, alternative things, therapy, acupuncture, and other types of pain management items, injections and so forth... but that should be NOT considered "pain management".


There definitely needs to be a "different name" for those who ONLY OFFER "alternative" ways of pain control. It is misleading to patients, and unfair to us that think we are going to someone who can help us with pain, whether medications of any kind are involved or not, if the first thing you see is that you do NOT prescribe pain medications. It could be that "opioids" may not be needed, and there are certainly other types of medications, such as muscle relaxers, meds for certain types of nerve pain, NSAIDS for those who can take them, Migraine medications etc... so the "host" of pain control medications are NOT ALL "narcotics"..... This is a HUGE PROBLEM that needs to be resolved. And I know there are people who "abuse" the system. They are NOT legitimate patients and they get medications for other reasons other than for real chronic pain. BUT, the THOUSANDS OF US who are TRUE PAIN PATIENTS should NOT BE PUNISHED due to those who "choose to abuse"...


Rhia - PLEASE Do your own research and take time to write, call, email your Congressional people, the CDC, and spread the word through your own Social Media Networks!

Here is the link to this bunch of garbled mess from the CDC!


http://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm



These photo's of my legs, and the abscesses are just more of a small "portion" of suffering from the pain, and all of the other complications from Lupus, RA, Sjogren's and so forth... We "NEVER FOUND OUT" exactly why all of these appeared on me... but it took over 2 YEARS for it to all clear up.... They just told me after I went through every test and specialist that it was the Lupus... and then the cellulitis below that turned into abscesses on both of the tops of my thighs tool=k over 6 MONTHS to finally "heal" and now I have two huge terrible looking scars from them... and talk about pain... I had to go for 8 weeks once a week to a "Wound Care Specialist" in Dallas, that debrided those every week, in other words "cut out all of the dead materials and put special material in them that was a "collagen" to help "fill in" and heal those very deep wounds... at first they were about 3 inches deep and at least 2 to 3 inches wide...

Below are the wounds from the cellulitis that both turned into abscesses.... and in between me seeing them, I had to clean these myself, pull the packing out and redress them daily... I was on 2 different antibiotics for 6 months at least... and the still look horrible... I love spring and summer, but I dread having to have people "see" what they look like now.... 

Elderly Parents, Alzheimer's, Dementia, Falls, ER's, and so forth....

Please continue to keep my Mom, myself and family in your thoughts and prayers. Things are just getting worse. Mom was on the floor when I got there yesterday, she had fallen and had been laying there for she said 2 hours. She "thought" she tripped, but I am not sure that is what happened. Thank goodness, I had the paramedics come out, and we did take her to the ER to be checked over. She had a bump on her head, and was complaining of her neck hurting, and being of course "sore" all over... nothing showed to be broken, and she has a couple of bruises, and a couple of small "wounds" but nothing bad enough for stitches. This situation is just getting worse by the day. I was there on Sunday afternoon, and her medications once again were all mixed up. I had just had them all correct in the pill box for 7 days on Saturday. So, I got there and found Sunday, part of them "moved" around, and 3 or 4 days of them "missing"... I explained again, about that she cannot take 2 or 3 days worth of medications... or NOT take any at all. But, I honestly do not think she "gets" any of it. She was so "out of it" Sunday, I was extremely upset and concerned when I left there. But, I also was not feeling well myself, and I am dealing with my own pain pump NOT set correctly, and I am not sure what the hell is going on with my own pain doctor, but he was "off" himself week before last when I went in to have it refilled. He had the settings "way off" and I wondered why my pain was still so bad. I knew we had not gotten it all the way back up to the normal range that he old pump had, simply because we did not want to overload my system with too much all at once, but it is definitely NOT near being correct. Even the 3 boluses I take daily are set at 0.1 and should be (1.0)!!! So a HUGE DIFFERENCE... and I had been taking I guess my oral medications a bit more than usual because I have been compensating for the pump not being set correctly. Anyway, I go in this afternoon, but not until 2:30PM which is so late in the day to have to go to Dallas and then get out of there before rush hour and try to get home... plus MOM has STILL NOT GOTTEN ANYTHING FROM THE MARKET, and that is what I was supposed to do yesterday, until I got there and she was on the floor. Then I was really pissed at the ER. They NEVER CAME IN AND TOLD ME ONE THING. THEY REALLY NEVER ASKED ANY QUESTIONS OR TRIED TO ASK ABOUT OTHER HEALTH ISSUES, and in fact I DO NOT THINK ANY DOCTOR EVEN SHOWED THEIR FACE. 

There were two women, one of which I knew was a nurse, and she was not pleasant at all, and then another woman, who possibly was a physician but I did not know and she never said so. They did not ask me any questions, and I had left when they were taking her for the CT of her neck and head... the girl told me it would be 45 min to an hour before they would have the results, so I needed to run home, and check on my pups. 

I did not know I was going to be gone that long when I left the house, so they needed to be checked on. By the time I got back to the hospital no more than 25 minutes later, she was DISCHARGED and sitting in a chair, and they were trying to call me to come and get her!!!!!!! Again, no word from a doctor, no questions, nothing... they barely got a wheelchair to bring her out! And at the time all of this had happened at the house, she was not able to stand up by herself... so needless to say I am NOT pleased with anything I saw, and even the paramedics were not all that "pleasant".... 

I won't go into details, but basically I called the regular phone number and not 911 because I did not consider it a life or death emergency... Mom was talking, breathing, not screaming in pain, but she was not able to get up and she was complaining of her neck hurting... so I call the regular ambulance line... well when the paramedics got there and I met them outside, and told them she fell etc... and one of them said do you want to take her to the hospital? And I told him well if something appears to be broken, or she is not feeling well or in pain when you get her up, then yes, BUT, if she is able to stand up, or not complaining of pain then maybe I will not take her to ER but call her doctor... and he got about half smart with me and said well then why did you call 911? 

And I told him I DID NOT CALL 911... I called the regular ambulance number so if they from there made it sound like it was a 911 call I cannot help that... anyway, I did not get home until 4PM or after and I am mentally, physically and emotionally drained, even this morning... 

I have to get a home health care nurse set up to go out and see her when I am not there, or in between me being there, because I can't be there 24/7 and even though I go everyday, or call if I don't go, someone else needs to come in and check on her, her vitals, make sure she is taking medications properly, and so forth... I don't think she is eating properly... and there is just lots of stuff that is just not right, and this has happened way too fast... within 3 to 4 months she went down this quickly.... anyway, I have to get her stuff done this morning and then get myself to the doctor in Dallas this afternoon, and I hurt from head to toe... so again keep us in your thoughts and prayers.... Rhia

Chronic Pain, the CDC, Doctors and the "view" that seems to be blurred by being much too "one-sided"....

 I still will always believe that the CDC and others are presenting this "abuse" and Overdose situation FAR MORE ridiculous as it really is. Those that are going to ABUSE these medications, are going to get them, whether through doctors or any other way they can... it is just the nature of the abuse situation, whether it be legal meds, or illegal drugs... I also know that I totally understand being "cautious" and doctors needing to educate patients, and keep a close eye on them, when they are on strong pain medications. Those patients and their families need to know and understand what to look for as far as an overdose, or what to look for when that patient is NOT getting ENOUGH medication... because not getting "enough" out of pain, is just as bad as overdosing... you remain NOT able to function if your pain level is too high. 

And "NO" NO type of pain treatment will ever remove ALL of the pain in chronic pain illnesses, BUT it will do what it is designed for if you use it properly and that is get the pain to a "tolerable" level, where you can function most of the time pretty well. When my pain level is so bad, that I am literally sitting in my floor crying and screaming and just wanting the pain to end, then for some reason something is wrong. Either my meds are not working correctly, I need a dose adjustment, or possibly I have a new illness or something such as a new ruptured disc in my neck or back, or new nerve pain etc... and if I go to the proper physician which I always do, they can either send me for treatment or surgery, and/or adjust my medications to once again get me to a place I can tolerate that pain. 

There is always SO MUCH BAD PUBLICITY when it comes to OVERDOSES, kids getting hold of medications, "quack doctors" who prescribe whatever just to make money, and so on... BUT HOW MANY TIMES DO YOU SEE THE NEWS STORIES ABOUT HOW GREAT A LIFE IS ONCE SOMEONE IS ON PROPER TREATMENTS FROM CHRONIC PAIN AND HOW MUCH BETTER THEY ARE ABLE TO COPE AND HAVE A SOMEWHAT NORMAL LIFE???? RARELY! Our society as a whole has become so ENGROSSED IN THE BAD STUFF IN THE NEWS, THAT the GOOD things are never printed, talked about, or put up for public awareness... thus the public has no idea HOW MANY PEOPLE ARE TRULY AND GENUINELY HELPED BY THEIR PAIN MEDS... That is the issue, WE WATCH ABOUT WAR, AND TERRORISM, AND MASS MURDERS, AND ALL OF TRUMPS CRAP, AND THRIVE ON BULL, DISGRACE, AND the MORBID THINGS in this world, 

YET NOT LOOK OR EVEN HEAR OF THE THINGS THAT ARE MAKING A TRUE DIFFERENCE... the truly dedicated professionals who DO GOOD, and are GREAT PAIN DOCTORS, AND they DO treat their patients in all ways to help them... and if that means opioid pain medications then they do those, but they also monitor that patient... I take urine tests, go into the office usually at least every 3 months, depending on when the pain pump needs to be refilled, and I "abide" by the guidelines that my doctors ALL give me... I also let ALL OF MY DOCTORS, know exactly what medications I take, who prescribes them and why, and make sure every physician is on the "same page".... and I know many patients that also follow those rules, yet of course there are those that do not... but those patients are not as "prominent" as the patients like myself that "do the correct thing" and make sure they lock their medications up, they keep their doses where the doctors tell them, they do NOT run out of medications early, they keep up the time and dosage of their meds, they research themselves how each medication can effect another... for instance I did not know why I was not really supposed to drink "Grapefruit juice" and I love it... and I still eat a half a grapefruit here and there, but that is different than drinking the juice... because that juice can either cause some medications to be "stronger" or "weaker" in the body, due to the chemical makeup of the medications along with the acid and other things you get in the juice....

I FEEL ALSO ALL PATIENTS NEED TO EDUCATE THEMSELVES about ALL MEDS, INCLUDING pain meds.... OUR DOCTORS ARE OVERWHELMED AND STRESSED ALSO, so even though they SHOULD MAKE SURE WE KNOW CERTAIN THINGS, at times something may slip through the crack, and they forget or don't know to tell you... and even with our pharmacists, they usually point out certain things, but even they are overworked and overloaded with getting scripts ready for thousands of patients.... and with the internet at almost everyone's tip of their fingers, WE, should take responsibility to look up information, do research and also ALWAYS TAKE A LIST OF QUESTIONS TO YOUR DOCTORS VISITS! I NEVER go TO THE DOCTOR WITHOUT A LIST, some either new symptoms, questions, and so forth... because without that "yellow" padded piece of paper, as soon as my physician walks in that door, I would forget half of what I intended to ask him... so we have to also TAKE RESPONSIBILITY for our own bodies, listen to them, and believe me, I WILL ARGUE WITH A DOCTOR, if I FEEL something is "not right"... and more often than not I AM RIGHT! So, even if they get upset with you STAY WITH YOUR GUT FEELINGS until you are satisfied with the answers your physicians give you... a prime example is my pain pump.....

I HAVE KNOWN IT IS NOT SET CORRECTLY... I have had too much pain that should not be there since the new pump was put in, and I knew I would have to be bumped up a couple of times, but when I went in this last time, whatever happened something is very wrong. I am NOT getting nearly the proper amount of medication as I was with the first pump, and I know by how I feel, and what my PTM tells me, and even what my doctor told me in the office, my medications are not at the proper level. So, I am having issues with pain, and other things due to that pump not set correctly. I go in on Tuesday, and I intend on getting it upped properly, AND FROM NOW ON A PRINTOUT, of ALL OF THE SETTINGS! They used to give me a printout, so I could know exactly how it was set, when, what doses, etc... but they got a bit lax in giving them to me, and I got lax in asking for them... well I will walk out with a printout this time, and from now on... because that printout had helped on at least 3 occasions to "get my pump correctly set".... so it is imperative I come home with that information from now on.... 

I am sorry for the LONG post, but this is such an important issue for me and so many others, we must stand arm in arm, side by side, and make sure we the PATIENTS get the PROPER treatments we need in order to have a better quality of life...A great example is that due to my pump not being set right, and I have not had the cervical neck surgery yet, I cannot set and type very long... and rec ently my Mom began to have all types of pain with her lumbar spine, and she has several problems there that at 82 years old, and her other health issues, they really do not want to even discuss surgery... it make only makes things worse... so she is now on pain medications... at first we had her on NSAIDS but her kidney functions went haywire so she can no longer take ANY type of NSAIDS... so my pain doctor put her on a small dose of a pain medication and she had injections a few months back... well the pain is so bad now, she won't even get out of bed until noon many days... and she now understands what I go through... yet she is not able to "push" through the pain yet, because her medication needs to be either adjusted or changed to something a bit stronger... so her quality of life is nothing right now and quite frankly I fear if we don't get it more under control, she will just give up and throw in the towel.... so something has to be done to make her feel better and have less pain.....

May The True Meaning of Easter Bring Faith, Hope, and a Renewed Spirit to you in Celebration of that Stone Rolled Away.....

As we reflect on the true meaning of Easter Sunday, and all of the hope, faith and trust it represents to those who believe, I bid you love, peace within and without, and the joy that the "stone" was rolled away in 3 days. Our very reason for this blessed celebration. We too have our own "stone's that shall be rolled away" and we have that gift of being set free one fine day from all of the pain, hurt, conflict, and what our "human kind" brings... and shall be in a new and glorious body, and where as "Our Father" promised will walk on the streets of gold, and share everything good in that land far away. May you find all of that peace and comfort this Easter Weekend, and walk in a new light knowing in your heart that you too will be set free from our hurt, pain and suffering...

Our world has become such a place of horror, too judgemental, too oppressed again, too full of hate, of cruelty, with lack of respect for any "life". We have so many that lack any type of morality when it comes to the very sanctity of what human life means. Our world has become a place that many of us feel terror, rather than feel freedom to be and do what we feel our lives are here for.... Even though we try and walk in the light knowing none of what here will matter someday, it is difficult NOT to be frightened each day of what some of these hate mongers may do....  

#meaningofEaster  

#stonerolledaway

#Dad2005

So, with hope and a place of peace inside I wish you an Easter filled with all things good... Rhia  

By the way my other thought for tomorrow....

Easter Sunday 2005, was the day my Dad passed away. This is a photo of some of my family at the cemetery. I felt this was an appropriate time to share this once again. Oddly enough, that particular Easter also fell on March 27th, 2005. Miss you and Love you Dad! I know that You and all of the family, along with Tazzy, friends and others await there with open arms for all of us. As much as I wished you were still here, honestly, you are in such a better place. I am thankful that you are not suffering, and  you are not suffering, nor having to witness all of the horrid things of this Earth now.... Love you, "Pammy"

 

 

Deciphering "Alzheimer's", all types of "Dementia", which includes even Parkinson's, and many more...

Deciphering "Alzheimer's", all types of "Dementia", which includes even Parkinson's, and many more... A cry out for answers, as I wade through this monumental amount of research and searching I am doing!!!

 

 

 

I also would like for anyone that has dealt with a loved one, or someone close to you who would know about a "fast type of dementia" or Alzheimer's and so forth. This situation has went from mild "memory" issues, and forgetfulness, to telling certain "stories" I felt may not be entirely true. That was about 2 to 3 years ago... as I watched I began to see worse issues, could not keep up paying bills, making doctors appts, and many other things that were "off"... Then about 6 months ago, it went nuts....

 

 We went to losing 2 different credit cards THREE TIMES within a WEEK, not "recalling" how to put a car in "drive" or reverse, not able to turn on and use an oven that has been there and fine now for 12 or more years, either taking TOO MUCH medication, or like last week DID NOT TAKE ANY MEDICATIONS, stays in the bed till noon now, has not watched a television in 6 months and used to watch daily. 

 

Not eating anything healthy, just junk basically, cannot even make out a check correctly, fill in paperwork of any kind at all by herself, losing things, cannot remember after being told 7 times within an hour what the "day" was, which was Tuesday, plus that information is ALWAYS ON A CLOCK, WITH THE TIME, DATE, DAY OF THE WEEK, MONTH and even temperature on it. Never realized it was "time to change the clocks", suddenly cannot "dial my or no one's phone number correctly, most of the time), now is complaining and has been lately, of not just having issues with going "Number 2" toilet wise" but is "obsessed" with "toilet habits, and I "think" I am came to understand now, sometimes just does not know they need to "go", so there are now "accidents"..not going to the restroom when they should, cannot recall "talking to me" later on the same day she called me, and not recalling what she even said. Has no clue most of the time about naming "objects" or rooms, etc... at least 85% of the time... not recalling even the month it is... these are but a "few" of the many, many things I've seen over the past about 4 to 5 months with my Mom. And it leaves me with "all kinds of issues" that I have to get her to talk about BEFORE things are too bad and her memory is so much worse...

 

 I almost think I can add "hallucinating" maybe at times...I know a doctor told me that sometimes when someone has one of these illnesses, and they "forget", they just kind of "make up

" and fill in the gaps with something that can remember... so it will make sense to them and everyone else or is supposed to.... 

 

PLUS from another post of mine today! :) 

                                HELP NEEDED ON THIS also!

 

 

I have several issues going on, a NEW ONE is the Honey Bee's in this old piece of bus in my back forty, behind my house! They had built there before then went away, and now they are back again making a "hive" and swarming a part of that old bus. 

I also WANT TO GIVE that bus to anyone who wants to take it, and sell what is there for scrap metal. Plus there are lots of downed trees, or some that would be easy to get down, and some of it is pecan wood, so it could be someone may want some of these dead trees and limbs... plus I Know I am going to probably have to PAY someone to bring a small tractor in and mow that back "forty"... with all of the rain, and such, I've tried to knock some of it down, but now with the bees on one side, and as tall as the weeds are getting, even me with the weed eater yesterday, 

and got some down, some I have already sprayed with weed killer, and still I feel the city will be by wanting me to get it mowed down... so there is a large enough gate on the back of that property where a flat bed trailer, or small tractor can get through with no problems... I have some trees in my back yard, one in particular that needs to be cut down, again, several are dead, and I have gotten a great deal of the things off of it I can but I cannot reach much of the tall stuff, 

plus I don't want to try and stand on a ladder to try and cut more off of them.. so I really want to get rid of the bees and the old bus, plus all of those old trees and limbs, and get that back lot mowed where I can keep it under control.... PLEASE anyone YOU MAY KNOW, OR WILL DO THIS FOR A REASONABLE PRICE I WOULD APPRECIATE IT... JUST Message me here and we can go over details thanks, Rhia
 

 

 

 

DOES IT EVER END????

Now as if things are not screwed up enough!!!! MOM TOOK ALL HE MEDICATION MORNING MEDICATIONS THAT WERE SUPPOSED TO BE THROUGH FRIDAY! all of them already! THEN ONLY TOOK "PARTS" OF THE BEDTIME MEDS... WHEN I asked her why she just looked at me and said well it is so simple I really do not know why I can't "get it"????? Then she DID NOT TELL ME that her legs and ankles were VERY SWOLLEN... now this is since Sunday - well she did NOT take her LASIX all week last week, because she did not take ANY meds last week... and SHE said Well they were "worse" they are better now... BULL, SHE is playing with "fire"... the entire reason for being SO CAREFUL about swelling is TOO much FLUID can cause that "heart valve" to act up and then she is facing open HEART SURGERY!!! So, I MADE HER TAKE ANOTHER LASIX and watched her and then increased it over the next 5 days to 2 every other day, which is what her heart doctor wanted her to do in the 1st place!!!!! 

Then "THEY ARE BACK!!!!!!!!!!!" I was in the back yard a few days ago, and in the back forty lot over some of the "weeds" I saw lots of what I thought were those damned "May Flies" which I hate swarming... BUT NO, THANK goodness I went back today and looked, because earlier I was out there with the weed eater trying to knock down some of the tall weeks before the city freaks and wants me to pay to have someone come and mow it with a tractor... 

BUT I stopped and decided I had enough room to spray weed killer as usual and should knock it down enough, it is all weeds and no grass... BUT, I LOOKED BACK AT THAT OLD BUS again a bit later AND IT'S THOSE DAMNED HONEY BEES!!!! WE "RAN" THEM OFF WE THOUGHT' They built in the neighbors walls... and he almost never got rid of them and NOW THEY BUILT OR ARE BUILDING BACK IN THE DAMNED OLD PIECE OF BUS ON MY BACK FORTY!!! I have been wanting to get someone to haul it and a bunch of old dead trees and tree limbs out, but finding the money is not easy... SO CRAP I have to do something... I just hope I can find someone who will come and "move that damned hive".... what a mess... 

Bub's is better, and I still never "found" what bit or stung him, and he is still not all the way over it, but all of it is looking much better, and I can tell he feels much better... what a damned nightmare... I do not honestly know what to do about Mom... and then I find out something about my car lease that I am really pissed about, but I will "save" that story until I do some research..... anyway, things suck even worse, and I am worn out.... and sick and tired of it all..... does it ever end!!!????

National Pain Report Offers New News - an Online Support Group

I have been following many of their articles over about the past 9 months and LIKE many of the articles, and things they share about pain, chronic pain, and all of the causes of severe never ending pain...

Since I am a pain patient, and also know what it is like to even not have a "great doctor" who listens and helps, and family that seem to not understand, the loss of relationships, friendships and the loneliness that all too often comes with these "silent and often invisible" illnesses...

So, I share with you they are opening up their own Online Support Group!


http://nationalpainreport.com/online-support-group-for-chronic-pain-launched-8829695.html

Still Just PEEVED over this mess about Pain Medications and the CDC! WE are ALL NOT ADDICTS OR ABUSERS!!

I am just so TOTALLY PEEVED at the CDC and ALL that they present when it comes to Pain Medications, especially "opioids" I want to SCREAM! YES, there are those who choose to abuse... but that abuse is FAR NOT what has been in the main stream of the news, and from the CDC! Right now, and I know many that suffer from all types of severe chronic pain daily... if WE including myself, had any OTHER CHOICE, and did NOT have to have these medications in order to have a better quality of life, you can BET WE WOULD CHOOSE SOMETHING ELSE! Many, MANY OF US, have lived through YEARS AND YEARS OF HELL! We have been through the many tests, all of the other medications, we do "exercise", we do try and go on with our lives, we DO ABIDE BY OUR DOCTORS RULES AND REGULATIONS, we DO everything we are supposed to do OR NOT SUPPOSED TO DO, in order to try and not have to take pain medications YET FOR SOME OF US, THEY ARE OUR SAVING GRACE! They are what allows us to get up in the mornings, and go on about our days the best we know how, whether that is work (and even with my medications I had to stop working in 2003, and spent until 2007 getting my disability! Durong that time I SURVIVED barely, with very little medication, BUT I was too ill to work, too ill to really do much of anything, I had lost hope, and was about at the end of my own rope, until I FINALLY FOUND MY pain specialist who tried to put my life back on a tract of being able to "live"... DO THEY TAKE AWAY ALL PAIN? NO! NOTHING, but the day we LEAVE THIS PLACE AND MOVE ONTO WHEREVER WE GO FROM HERE, will ALL OF OUR PAIN BE GONE! BUT, can we "take it", can we "live with it", can we do things with our families, some of us still work, do advocacy work, be useful in our society, in our neighborhoods, churches, with our loved ones, and try to enjoy life as much as possible... 

YES! I realize that without all of the other surgeries, PLUS more ahead, my pain would only get worse... so even though due to my heart problems, and other illnesses, I take a chance, I DO have surgery IF my doctors tell me they have a chance to "lessen" "new pain" that comes when you have degeneration of joints, of your spine, when things happen you have NO control over, that can cause further pain, you DO what you CAN to NOT have to take any more medications... after all any of us can only take so much medication, no matter what type it is... and any medication works only as well as your physical, emotional and mental state allows it to... 

BUT WITHOUT MY pain medications, I would NOT be able to take care of my aging Mom, who is 81 and now suffering from probably Alzheimer's or some type of Dementia. I could not do my laundry, take care of my house as much as I can, try and cook for myself, take care of bills, and do my very best to go on with my life as I do... I just posted that this WEEK HAS BEEN HELL! Pain due to weather change, time change, and just me having to do more that usual this week brought on more pain.... 

BUT, I still try and get up, move forward, some day more slowly than others, but try my best to take ALL OF MY MEDICATIONS AND LIVE LIFE! SO, WHEN I read and hear about the CDC, and all of those WHO HAVE NO CLUE WHAT LIFE IS LIKE... AND WHAT IT WOULD NOT BE LIKE, IF I WERE NOT ABLE TO have my medications, IT REALLY MAKES MY BLOOD BOIL! I can GUARANTEE YOU IF ONE OF THEM, OR ONE OF THEIR LOVED ONES, SUFFERED THE SEVERITY OF PAIN that some of us do, or WOULD WITHOUT OUR MEDICATIONS, they WOULD ALSO BE FIGHTING THE GOOD FIGHT TO TELL THEIR STORIES, AND make sure they OR THEIR LOVED ONES WERE ABLE TO GET THE PROPER TREATMENTS AND MEDICATIONS THAT THEY NEEDED IN ORDER TO NOT SUFFER DAILY! My hopes are that ALL OF US THAT UNDERSTAND THIS PASS THIS AROUND, WE TELL OUR STORIES, WE CONTINUE TO FIGHT AGAINST THIS MESS OF OUR STIGMA WE ARE ALL "ADDICTED"... WHICH IS BULL.. I never feel "high", I feel relief, relief enough that I can go on with my day.... and if you see me WITHOUT MY MEDICATIONS, you would see someone who was in so much pain, that walking across my little home would be horrible, AND WHEN I have my medications, I am able to try and move on with my life.....

http://nationalpainreport.com/cdc-opioid-guidelines-released-8829808.html 


I hope YOU TOO will stand up and tell your story! WE must stand together on this!

Wishing You The Luck of the Irish and Happy St. Patrick's Day!

Wishing You the Luck of the Irish! May you have a wonderful St. Patrick's Day, and don't drink to much of the "Green Beer"!