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

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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/