FINALLY, A Beautiful Day, more Wondrous than I have had in literally months and months!! Family, time away as a caretaker, as a patient, & feeling somewhat "normal" for at least a day or two.....

FINALLY WHAT IS AND HAS BEEN AN INCREDIBLE DAY IN SPITE OF LUPUS, RA, SJOGREN'S, DEMENTIA, AND ALL OF THE OTHER HORRID DISEASES AND CHRONIC PAIN!


This has been and is one of the BEST DAYS and BEST WEEKENDS that I've had in a very, very LONG TIME! It is so awesome to have my daughter Amanda  and her hubby Jimbo, as well as my son Jason all together in the same space, and be able to have a wonderful lunch (I ate way too much) and just enjoy one being together.... I surely so NEEDED this, and I know for them it is truly important to them also. Plus, although yesterday was a "rocky" start with Mom, I will explain more later, she did finally EAT, yesterday afternoon, and a bit more than usual. :)) 


She has not eaten in days again, other than drinking the Ensure, so seeing her actually eat and enjoy the food, although a very small amount, it was a blessing. Plus, we know she really does not for the most part know who any of us are, even me, I think she did have some lucid moments over the past day or so, and did understand the three of us were there today and were visiting her. 

The road to getting help is my next feat, I HAVE TO GET HOSPICE in there! I had to turn her mattress completely over due to now we are having "accidents" in the bed, that I did not know about, until yesterday... so I bought some of the "Depends" or as Jim and I used to call them "OOps I crapped my pants" underwear... LOL... right now she sometimes just I think does not realize she needs to get up to pee... that is our issue at the present.... so after buying new covers, pads, waterproof for the mattress, and all plus I put some under pads beneath her, so that way, we don't have her laying in urine, and causing sores... we don't need bed sores for sure.... but again, I am so proud of both my son and daughter, and I hope they know just how much I love them, and every day wished that we could be "closer" as far as our distance away in miles from one another... but sometimes life does not "give us" what WE think WE need, it deals out what for one reason or the other WE NEED, and don't know why.... and I also thank my friends for all of their love and support! Rhia

 LOL!!! For some very Odd reason this just seemed like the photo to publish!

CNN Stigmatizses Chronic Pain Patients in National Pain Report by Paul Gileno

FOR ALL of us that are Chronic Pain Patients, Caretakers, family members of those who suffer from so many different types of Chronic Pain, many of us daily, and without our medications, along with other ways we "fight" against this epidemic, seeing that the CDC and the government is NOT on our side is frightening and down right wrong!

Those that do not understand chronic pain, from so many different types of illnesses, have no clue what happens to our "daily quality" of life. We would not be able to function normally, from taking care of our families, children, working, doing our shopping, going out to eat on a Friday evening, or even sitting with the family at home enjoying a movie. Chronic Pain without medications and treatments put each of us in a place of "NO life"... we would be sofa or bed ridden, we would not be able to cook, clean, do our yard work, shop, take our children to school or participate in the many, many activities that people that do not know what this type of nagging, gnawing, type of horrendous pain is like.

Many of us understand "acute" pain, from a broken bone, broken rib, from surgery, from an accident, which after a few days or week or so, that pain is gone once that heals. But, those of us with Diabetic Neuropathy, severe spinal pain and sciatic nerve pain, pain from the many Autoimmune Illnesses such as RA, Lupus, Sjogren's, Autoimmune arthritic types of pain, osteoarthritis, neck pain, pain from so many different types of problems that does NOT go away, that it stays with us throughout the rest of our lives... THAT IS THE SOMETIMES INTRACTABLE pain I am speaking of.

It always floors me when someone says, "You don't look ill?" Well, I, like most, do not like to go out in public looking like "death warmed over" as the saying goes. We "try" to put on our "best face"... to try and move through the pain, so we can appear to be "normal, even though our lives, our physical, mental and emotional states are far from normal. There is cancer pain, which in all ways is chronic, when it becomes "incurable". There are problems with bladders that can cause horrid pain, and it also an autoimmune illness. Up until I was "diagnosed" formally with RA, Lupus, Sjogren's, Raynaud's, and so forth, I had Migraines, and those were enough to cause me to have to after 25 or more years fighting them, had to quit working. They were so often and so severe, that I missed way too much work due to those. Then came my joints "falling apart" before I was even 35 years old... "arthritis" and people say how can someone so "young" have that had of arthritis that "eats away" at the joints. Well, we now know that infants can have RA, Juvenile RA, and some of them as young as 9 months old! So imagine, an infant so young, and the parents realizing that this hell of a disease shall effect their child or children for the rest of their lives.

I have always said, for anyone especially those in Congress, in the CDC, and so forth, that would like to "walk a week or two" in my or many others shoes with these illnesses would be screaming out for anything to relieve the pain!

So, the article below is just one example of how we still do not have ENOUGH EDUCATION IN OUR GOVERNMENT, in our NATION and around the World about ALL of these diseases that bring on severe, chronic, daily pain!







http://nationalpainreport.com/opinion-cnn-stigmatizes-pain-patients-8830432.html

TODAY IS Lupus Awareness Day and Clinical Trial Awareness Day!!!!!!

http://www.lupus.org/action/put-on-purple-toolkit

http://curec.lk/1rXoRqv

 

 

Be Sure to Wear YOUR Purple, get the word out, through Social Media on Clinical Trials and Let's Keep Plugging away to END these horrid diseases!!!

May 20th Clinical Trial Day! Know zMore WAbout Clinicl Trials in a Chat Session & Severe Cat Allergies Clinical Trial all sponored by Cure Click

 http://curec.lk/27F6ozt

Want to Know More About or Educate Others About Clinical Trials?

 

#ClinicalTrialsDay #TrialChat #CureClick

Facts About Clinical Trials

HAVING A DIFFICULT TIME WITH A PET SUCH AS A CAT DUE TO SEVERE ALLERGIES? NEW CLINICAL TRIAL THAT MAY HELP YOU TO HAVE THAT "FIR BABY" YOU WANT SO MUCH!

http://curec.lk/1rTQSiS

SPONSORED BY CURE CLICK

#Allergies, #CatAllergies

My Mom nd the Physical Toll This Horrid Disease has taken upon her in every way.....

 This photo I took Today May 7th, 2016 of her.

This photo I took at Christmas 2015 of her.

For those that do not know, this lady was able to do her own shopping for the most part, cleaning, cooking, and just getting out of the house when she wanted not but about 7 or 8 months ago... she went from 150 pounds to she weighs around 114 pounds now... so it is not just the mental and cognitive changes, it effects someone in every way possible... it is hard to fathom she is the same person, My Mom.... and that is sad... she usually does not know who I am, nor does she realize she is in her own home.

Brand New Clinical Trial brought to you by Cure Click! Anemia

http://curec.lk/1NwDFpW

Opioid Addiction Is a Huge Problem, but Pain Prescriptions Are Not the Cause

More Information about how Congress and others are talking about...

http://blogs.scientificamerican.com/mind-guest-blog/opioid-addiction-is-a-huge-problem-but-pain-prescriptions-are-not-the-cause/

Brand New Clnical Trial OUT for MIGRAINES! - sponored by "Cure Click"

http://curec.lk/23HAhdL

I have SO BEEN HERE for years and years of most of my younger adult life! I wished back then we had any type of answer or treatment for these horrid headaches. I recall telling my doctors the "weather" effected them, as well as my other joint issues etc... and they would say I was nuts... and NOW it is PROVEN THAT WEATHER AND OUR BAROMETRIC pressure DOES HAVE AN EFFECT ON MANY CHRONIC ILLNESSES, ESPECIALLY INVOLVING JOINTS, AND THESE TYPES OF HEADACHES....

So, I am PLEASED to present the latest clinical Trial by Cure Click sponsors and HOPE ALL do SEE a dramatic change!

#migraine

One "Mixed Emotional" Mother's Day tomorrow.... And A Happy Mother's Day to ALL Mom's everywhere!

HAPPY MOTHER'S DAY TO ALL "MOM'S" 2016!

Tomorrow, Our Upcoming "Mother's Day" will be one of the most difficult Mother's Days to remember. As the overwhelming realm of mixed feelings, thoughts, emotions, all surround me, I am just at almost a loss for words today. 

 

My "Mom" once again did not know who I was today, nor yesterday. I got there, and she told me she had "company" yesterday afternoon and I said you did, who? She said " I am not sure" and then I asked her if she let them in the house, and she said, No, they had a key, I guess.... Well, the "company" that visited yesterday afternoon was ME. I brought her some chicken nuggets and fries for dinner around 5PM yesterday, so I asked her if they brought "chicken nuggets and fries"? She said, well, Yes in fact they did... 

I did not now whether to sit in the floor and cry, or sometimes when she "does not know" my as her daughter, I will say, Mom I AM your daughter.... yet it is difficult when I am sitting in the middle of this every day, 7 days a week, and when I am not there for those hours I go, then I worry, maybe I should not leave her, BUT, I am totally drained, exhausted, and my own pain level today is well over any "10" 

I realize my neck and lumbar spine are continuing to get worse, AND all that I am doing is not helping.... BUT she is my MOM, somewhere inside there she is my Mother, and I swore I would always take care of both my parents no matter what... so "Happy Mother's Day" to ALL of the MOM'S, Grandmother's, "Son to be 1st time Mom's" and the many that are "active" in being a Mom in one way or the other... I bid you peace tomorrow, love and hope.... and even when there is just a "shell" of a Mom you once knew, remember SHE is there always in your heart....

Another Week of Horror, severe pain, trying to BE A CARETAKER TO MOM, when I NEED a CARETAKER RIGHT NOW ALMOST MYSELF, LIFE, AND what it decides to pitch at us!

Once again things are not well with my Mom nor Myself. I found her in the floor again yesterday around noon time. I actually think she may have not "fallen" but more just slipped out of that rocker and down onto the floor from the way things looked.... anyway, I FINALLY by getting her to sit up for awhile, and her medications, and then getting her feet under her and her walker "steady" I got her up and into the chair... the lady that is over the PT portion of the Home Health came over and of course I had to tell her about this.... and as I told her, Mom got up, walked with her walker after she was there, she was able to talk fine, she had no bruises, she did NOT hit her head, and I saw no difference from her the day before... she seems to be "fine" one moment, and the next she has no clue where she is or who I am... 
so none of that changed. 

So, after that woman left, I gave her the rest of her regular medications, some Ensure, something to drink and tried to get her to eat, and she of course did not want to eat again. And besides all that she stopped up the damned toliet (I have no clue what she is doing) but she did not tell me until yesterday and claimed it had been that way for a couple of days... well in among the woman being there, me trying to answer questions, trying to plunge the toliet, I finally went and got some MR. Plumber gel, poured it in, tried again, and I got it partially unstopped... but I left it and told Mom NOT to use it at all, to let it sit overnight and use the potty chair by the bed... and today, it may go ahead and unstop...

I have a "small snake" that can go down into the toliet and I know it is not very far, because the sinks work fine, I used the washer etc... and only the toliet seems to be the issue... I may have to call a plumber but I know how much they charge... last time mine was stopped up but down below my "clean out" in the yard, I poured bleach in it for days, and it was tree roots that slowly can "seep" into the pipes and fill them... so little did I know I almost had it unclogged...so when he got there, he basically ran a bit of the hand auger through there, and hell it took him 2 minutes and cost me over 100.00!!! So, that is why unless I just can't get it today, I do not want to call a plumber, especially on a weekend.... So, I was totally exhausted, hurting badly, my own lower spine is worse, and my neck, shoulders, arms and hands throb, burn and hurt so badly, I can barely stand to sit here and type... dammit the hell I am sick of this crap... but I get a call about the time I pulled up to my home from Mom's and it was the "lady" I 'thought" had been at the house earlier... and she was "concerned" that Mom falling out of the chair "worsened" her condition... and as I told her, in the first place both myself, my son feel and the woman that was there, that she really did not take a "hard fall" - it was more she just slipped out of that chair... that I have been TRYING TO GET RID of anyway... she cannot get in and out of it, it rocks and glides... and she needs to not sit it in anymore... 

plus I threw out an old magazine table, that is so wobbly and old, she tried to "push" herself up on it, and I know also is an issue... in fact I threw it outside yesterday and told her it was NOT coming back into the house... anyway, this woman almost acted as if I was "not doing the right thing" with Mom... well maybe I am wrong, but I have been doing everything, and 

if I remotely thought she was hurt, or in any way had hit her head, or was "worse" from this "fall" I would have called the ambulance and took her out to be checked out... but she was NOT injured, not even a bruise and in fact once she was up off the floor, got up and walked around, and so forth, she told the woman she felt "okay" and that was no "pain" at all other than her regular "back pain" that has been there for many months now.,. so I took "offense" to this woman, not knowing what took place, what I see every day of my life, what I know goes on etc... acting as if I am being "cruel" or something... honestly home health care is a "joke"... other than the "aid" helping Mom by showering, washing her hair, and changing her sheets a couple of times a week, the other 2 really do "nothing".... so I am not thrilled... I thought the entire purpose was for them to spend up to 35 hours a week with her, and be there to take some of this off my back, where I don't have to be over there 3 or 4 times every day... it is taking a toll on me badly, especially this past week... I am physically in horrible pain myself now, and when I am complaining, then it is really, really HORRIBLE pain! 

SO, I have a QUESTION? DOES ANYONE KNOW MORE ABOUT "NON TERMINAL HOSPICE" or more of A PERSON THAT COMES IN AND DOES MORE THINGS SUCH AS STAYING THERE A CERTAIN AMOUNT OF HOURS A DAY? I am "wading" through the insurance to see what is covered, and what she "qualifies" for... but I MYSELF NEED A CARETAKER, AND I NO LONGER HAVE ONE, and me trying to be almost a "FULL TIME CARETAKER FOR HER AND MYSELF, IS TAKING ITS TOLL ON ME"... so if anyone knows someone here in Ennis that does that type of thing whether just "personally" or through a company would you let me know?