Information on FM and How the Weather Effects IT - Just like those of us with any type of joint/muscle issues, Lupus, RA, Osteoarthritis & So Much More

 http://fibromapp.com/fibromyalgia-chronic-pain-the-weather-connection/

Also things We Hope Others that Know Us have Learn about Chronic Pain during Chronic Pain Awareness Month

http://healthprecious.co/17-things-people-with-chronic-pain-want-you-to-learn-during-pain-awareness-month/

And The Staggering Toll The Chronic Pain Takes on So Many!

 https://www.yahoo.com/beauty/survey-findings-highlight-the-staggering-toll-of-128057394882.html

We continue to be a very LONG way from resolving the MANY issues and illnesses that result in so often severe and many times Daily CHRONIC PAIN! Those that have never experienced this type of ailment have no clue as to how it effects every aspect of your life. We are not "insane or crazy"... and we do not have "chronic pain" to get attention. We don't use it as an "excuse" to get out of work, family gatherings, going out or helping with things. We are truly in such pain, that often times just a loud noise can make us shutter in such terrible pain. Whether it be headaches, bone and joint pain, nerve pain of so many types, pain from the back, from illnesses such as FM, Lupus, RA, Osteoarthritis, and lately I have learned that even DEMENTIA can cause "chronic pain". So the next time you see someone that appears to be hurting, or they park in a "handicapped" spot with a placard, and they "seem" to "look okay" - NEVER take that for granted... many of us try to "hide" our pain in public, we don't want anyone to feel sorry for us, or look at us oddly, or start asking lots of questions. So, we find ways to either "hide" that pain for a bit, or we just don't go out and stay behind closed doors until it is where we can make it out without showing the pain.

"Pain Patient Bills of Rights"

In Honor of Pain Awareness Month Here is one "Chronic Pain Bill of Rights"

https://paindoctor.com/pain-awareness-month-picking-pieces/

Brought to you by "Pain Doctor" http://www.paindoctor.com

Many may think some of this is just "a normal way it should be for those suffering. Yet, you would be shocked at those, even medical specialists that STILL DO NOT BELIEVE how badly Chronic Pain can be, and just how it steal your entire quality of Life!

NPR - Trying to Find Solace from Isolation - A support Group

I have a question for EVERYONE that is either interested in an "online support group for chronic pain and illnesses OR having a Local" group here in my home town - all that are fairly close here in Ennis, Waxahachie, Ellis, Navarro Counties, I have given thought to this for a long time... here is an article from the National Pain Report. - I know many of you feel "isolated" and alone like I do when it comes to our chronic pain and illnesses. Even though we may have family or friends that "try and understand" it is NOT the same thing as having people around you that KNOW because THEY TOO are going through the exact same thing. With the entire ordeal now over chronic pain, and pain medications, and also the use in some states who have legalized "pot" - we still have much stigma, many that do NOT believe us, even the professionals, and trying to cope with that can be almost unbearable. You are already dealing with chronic daily illnesses and pain, then to try and go through "daily life" surrounded by many that may not support or even believe you is devastating. So, PLEASE SPREAD THIS AROUND!!! I will put it up on my blog, my newspaper, and around, but I also NEED HELP IN GETTING THE WORD OUT. If I have enough local people I may consider a group locally. If not, then something online, BUT something that truly gives everyone support.. not just the same old thing.., sometimes groups just don't make it because people become frustrated when they cannot really get the help they need, yet they are putting their time and effort into it. A couple of examples - in the past month, I have had my eye specialist, that I have been going to CANCEL ON THE DAY OF MY APPT. and NOT CALL ME! So, happens, I just had that "feeling in my gut" and since I have to drive about 15 to 20 miles to see him, I called the 2nd time and sure enough, they had "moved" my appt to 11:45AM and it was supposed to be at 2:45PM....NO ONE called at all... and then when they rescheduled it was going to be another 3 or 4 weeks AGAIN before he could see me! It wasted MY TIME getting dressed and ready, when I could have been doing other things, it put off once again an exam that is already way past due partially because of one of my Lupus medications that can cause macular degeneration, and my eyes and glasses are WAY OFF! I am having headaches, not sure if the glasses are related , BUT I got upset. So, I called another eye doctor in Waxahachie and he could see me the next day! But, I had another appt. with the plumbers, so they could see me that Friday! I got there, was checked in and lots of people were coming in and out, so it is a fairly busy office. But, they got to me promptly within 5 to about 8 minutes of my scheduled appt time... they were very accurate with the latest type of equipment, and in fact, so good, I did NOT have to go through old "dilation" of my eyes. He had some very up to date digital equipment that read everything very accurately. I saw him, he told me that I was okay, and no signs of the degeneration, BUT of course I have "cataracts" that are NOT near ready to be fixed. They are not "ripe" enough I believe is what they call it. So, I decided since my exam cost me NOTHING, no co=pay at all, and my insurance was giving me 40% OFF my lenses, frames, and 20% off of the "changing to darker" transitions I guess, and the doctor had put in my script all of that, plus my special prisms that have to be in them due to the double vision.... so I saved something like 160.00 or so on the frames, lenses, and all they needed to be added..., I was SO PLEASED AND WILL DEFINITELY RECOMMEND him to anyone in this area. His staff were extremely nice, they knew their "stuff" and I was so pleased that they were all so very nice and polite! Of course NOW I await my glasses, and did this the Friday before Labor Day, so I am sure it maybe the end of this week (hopefully) before I get them in... the prisms also sometimes take an extra day or so, so it will be 2 weeks this coming Friday. I hop they get here.... But that is JUST ONE EXAMPLE of us as CHRONIC PAIN OR ILLNESS patients (and others when it comes to their time) that is something I should NOT have had to deal with. Doctors EXPECT US TO BE ON TIME AND CALL 24 HOURS AHEAD IF WE CANNOT MAKE AN APPT. - but OUR time is NOT as important for them... Another example was the same as my own regular MD's office. I had an appt. week before last, I was already there and IN THE ROOM waiting for him.... and the nurse steps in to tell me he is "running behind" and would I prefer to reschedule? I TOTALLY understand sometimes emergencies arise, BUT again that has happened to me several times with him over the past couple of years.... those are things that are so frustrating, and especially when you are chronically ill, in pain, & already having been fatigued, plus dealing with showering, dressing and getting yourself to the doctors office.... so, I can see so MANY different aspects of how a online or in person group, potentially could be so beneficial to so many of us. As I told my daughter just this morning, with Mom gone, I have NO ONE HERE to talk with, visit with, etc... my daughter, and I are close as far as talking to one another at least 4 times a week, but she is 8 hours away as far as being physically close... my son is also working and does not live close by, so it is not like I had when Mom and I were within 5or 6 blocks of one another... I feel so very isolated and alone... plus I am dealing with a HUGE amount of guilt, due to issues my Mom left that I didn't know about, thus now I am having to try and cope with... and had I known before she got so ill, I may have been able to "fix" what she has kind of "wronged" leaving me hanging with it all... anyway, just a thought about a group and the article I read.,

http://nationalpainreport.com/chronic-pain-isolation-start-a-support-group-8830919.html

FINALLY after MANY YEARS THEY SAY THE WEATHER EFFECTS PAIN, JOINTS, MUSCLES, BONES AND MORE.... CHRONIC PAIN!

This is NO NEW NEWS to me - I've told doctors since I was about 17 years old, with the start of migraines THE WEATHER HAD LOTS TO DO WITH THEM, and as the years went by and I developed so many issues with Lupus, RA, joints needing surgeries and anything joint, bone related, the weather DOES PLAY A PART in the pain, swelling and inflammation.

 FINALLY THEY ADMIT WEATHER DOES EFFECT JOINT, MUSCLE, BONE, AND OTHER TYPES OF CHRONIC PAIN!

http://www.bbc.com/news/science-environment-37301579

Happy Labor Day - Journey's and How Our Lives Change Within Moments - Coping with Grief, Chronic Pain, Lupus, RA, Sjogren's and taking one step at a time....

I’ve felt so many different emotion since June 9th, when my Mom passed away. As I told my daughter Amanda on Friday evening over the phone, I think the entire ordeal is just now beginning to set in as reality. I catch myself wanting to call Mom to tell her something or ask her something… often times a week. Then it dawns on me, I cannot do that via telephone anymore…. I’ve put off really doing ANYTHING for just myself. I’ve been so busy taking take of all that needs to be done, from paperwork, to painting and working on the house there, that I have NOT had anything I really wanted, needed - other than the weather get nice enough and for me to be well enough to feel like going to Winstar in OK for a night. As soon as I can find a Sunday and Monday, here, there and between there is going to be nice weather I plan on going and it will be a “delayed celebration” of what would have been Mom’s 81st birthday on August 28th.

 But, it came to me a week ago, if I don’t find some other way to sit at my computer to “write” I will never get it done. Right now due to my neck needing surgery, and possibly my lower back, I cannot sit here for very long at a time…. plus when I have the surgeries, I won’t be able to sit like this, due to the neck brace for 6 weeks and so on….


SO, I decided I CAN sit on the sofa, with my legs up, where my ankle also does not swell so badly, and THERE in the evening after dinner when these two hellions (Bub’s and Peanut” calm down - one on each side of me, would be a perfect time for me to get some writing done, more on my blog, be able to get possibly back into my advocacy work, but MAINLY WRITE! I desperately NEED to finish my 3rd book, and after what happened to Mom from this past January till June 9th, NOW I totally understand “why” my writing was “delayed”…. it is clear as day, that I MUST include all of what Mom went through along with myself, as a caretaker that needs a caretaker…. and so much that no one even knows happened…the details of each and every day being there with her those six months, even sometimes changing from hour to hour…. I witnessed such an unbelievable change in her emotionally, physically and mentally… and that is why my writing was put on hold…. I have much more to add to that journey, for myself, for her and for my kids… and Grandchildren later and those to come… SO I broke down and ordered an Apply Air Laptop. I didn’t get the “biggest” or most expensive, because some of it I probably may never use. But, the screen is large enough, and I already love the way the keyboard is laid out and back lit….

I just received it late yesterday via Fed Ex, so I really have not had much time to “learn” about it…. I felt much “guilt” and hesitated at first before I bought it, BUT, I recall what my Mom said to me, several times, but moreover just before she began to really show the signs of getting so bad, so quickly, she made me “promise” I WOULD complete this 3rd book, and have it published. MOM was and will always be my “Greatest Fan”…. So, I want to fulfill that promise to myself and to her…

thus then I knew the laptop made perfect sense…besides, as much as I LOVE MY PRIUS! And planned on leasing another the first part of 2017, if I forgo that, and drive Mom’s Elantra, which only has 10,000 miles on it, and just needs a battery and tires (from lack of her driving it much) then I could do away with a lease payment and higher insurance… I have not made that decision yet, because that Prius was the BEST thing I’ve ever had in my life, as far as “items”…. but I have time to decide… so by then things will be more centered, and I will be able to make that decision. So, here are a couple of photo’s of my Brand New Apple Air Laptop!

HAPPY LABOR DAY!

Why Do We Celebrate Labor Day and How It Began! 

For a lot of people, Labor Day means two things: a day off and the end of summer. But why is it called Labor Day? Labor Day is a day set aside to pay tribute to working men and women. It has been celebrated as a national holiday in the United States and Canada since 1894.

­­
Labor unions themselves celebrated the first labor days in the United States, although there's some speculation as to exactly who came up with the idea. Most historians credit Peter McGuire, general secretary of the Brotherhood of Carpenters and Joiners and a cofounder of the American Federation of Labor, with the original idea of a day for workers to show their solidarity. Others credit Matthew Maguire, later the secretary of Local 344 of the International Association of Machinists in Paterson, N.J.

The first Labor Day parade occurred Sept. 5, 1882, in New York City. The workers' unions chose the first Monday in September because it was halfway between Independence Day and Thanksgiving. The idea spread across the country, and some states designated Labor Day as a holiday before the federal holiday was created.
President Grover Cleveland signed a law designating the first Monday in September as Labor Day nationwide. This is interesting because Cleveland was not a labor union supporter. In fact, he was trying to repair some political damage that he suffered earlier that year when he sent federal troops to put down a strike by the American Railway Union at the Pullman Co. in Chicago, IL. That action resulted in the deaths of 34 workers.


In European countries, China and other parts of the world, May Day, the first day in May, is a holiday to celebrate workers and labor unions. Before it became an international workers holiday, May Day was a celebration of spring and the promise of summer. Membership in labor unions in the United States reached an all-time high in the 1950s when about 40 percent of the work force belonged to unions. Today, union membership is about 14 percent of the working population. Labor Day now carries less significance as a celebration of working people and more as the end of summer. Schools, government offices and businesses are closed on Labor Day so people can get in one last trip to the beach or have one last cookout before the weather starts to turn colder.

 Links Below for More Information On the History of Labor Day

• U.S. Department of Labor: The History of Labor Day
•  (from the Dept of Labor Website)
•  
•  
• An Eclectic List of Events in U.S. Labor History

 

 

 

My Daughter's Birthday was the 18th - Such an Awesome Daughter I have! COPING WITH LUPUS, RA PAIN IN MY RIGHT THUMB, HANDS, WRISTS, LOWER BACK NECK, HELL OVER MY ENTIRE BODY! BUT, somehow WE MUST CONTINUE ON... AS I TOLD MY PUPS THIS MORNING, I CANNOT JUST QUIT & TAKE A TIME OUT!

Amanda looked like a tiny baby doll when she was born. She was only 1 and a half inches long, and weighed a tad over 7 pounds. I wanted a girl so badly, and from the moment I knew I was expecting her, I KNEW she was a girl.

My son, who was 5 years before her, was just a little blonde (cotton headed) as they used t say, and small too. He started Kindergarten like only a week after Amanda's was born. It was amazing to have one beginning school and a brand new one at home! I've always been thrilled they were 5 years apart in so many ways. Amanda and Jason remain close and have as always. He was always the "big brother" who could watch over her, and they later in high school knew a lot of the same people, so when Jason and her left to go out on a weekend night, I knew he would watch over her.


Yet, it seems like just yesterday they induced labor with her.  I didn't have the certain "hormone" to cause me to go into labor with either of them, so they had to induce with Jason, and they just planned on it with Amanda. Now this was BEFORE the sonograms, and knowing what the baby was before it was born etc. Sonograms were only done then if they suspect problems, so with a "normal pregnancy" that was just not something they did.

My best friend from High School Carrie and I were expecting within 2 weeks of one another. They told me Amanda would be somewhere around the very last of August, and Carrie's little girl RaeAnn was supposed to be like 2 weeks BEFORE Amanda... but alas Amanda made her entrance into the world a bit early on August 18th, and much to our surprise Carrie's pregnancy went over by two weeks and RaeAnn was born right after Amanda by about 10 days or so. I can recall Carrie being frustrated that hers didn't come as expected and I had Amanda a bit early. Carrier ate enough Mexican Food to feed Ennis back then!!!!LOL!!!!!! She would eat anything Mexican 3 meals a day, every day of the year..... and I really did not have many "real cravings' BUT I could NOT STAND the smell of bacon frying or Joy Lemon Dish Soap, both made me sick to my stomach and even after I had Amanda, for a year or so, I could not stand the smell of bacon frying... and I NEVER got over the Joy dish soap.. I hate that smell even today after 31 years!!!!

I wanted to share that with all of you, and let you know I am still painting on "house #2" trying to get over there daily and paint. I have decided to "try" and move in over there in October... but that probably means me having to hire some people to help me finish up the paint, putting the fence up,  & of course the "list" can be endless...mainly finishing the inside painting and getting the floors in "decent shape" which does mean also I have to have new linoleum or something like that laid in the kitchen dining room, small bath and right at the front door entrance.

Right now there is an "industrial type" of carpet in the kitchen and dining rooms that is of course glued down, so trying to save the dining room would be a mess. The kitchen already had linoleum under it at one time, and the bathroom is tiny but I also "may" have to have some plumbing work done in the bathroom. The pipes coming into the bath through the wall to the commode are "rusty" and already leak a tiny bit. I know that even that floor at one time had been wet enough that Dad had to have it enforced when they put in a new commode years and years ago. So, I figure with what water damage might have been there and then when Mom threw a washcloth down the toliet (after she got so "bad" with the dementia) and I had to call a plumber I tried at 1st to unstop it, not knowing it was a cloth in there, but she over ran it twice at least until I finally locked it down enough she could not open that door. By then she could not even walk to the toliet and had a potty chair by the bed, but it also done damage to the hardwood flooring in the hallway by the bathroom... I am going to just do the best with it because I will have a carpet runner to go into that hallway, so it won't be that noticeable anyway... but I also think that old sink needs to go and be replumbed, plus if it CAN BE DONE, I would like to break up that old iron tub (which so many houses built around the early 50's had those iron tubs, with the porcelain over them... so that tub has lost about all of the porcelain, plus I want a shower only, that I could just step into, and have one seat in it... BUT, to break up that old tub with that small bathroom is a freaking chore!!! We did it in this house, and put my "big honkin tub/sauna/shower" in it... and I still love it, BUT hell I use the shower, and nothing else really...

I cannot sit down into the tub really or a may never be able to get out, and with it just being me now, it is really way too large for now how it is used... it really is a shame, because one of my reasons, was to use the whirlpool, sauna etc... for my joints and muscles... but by the time I have had all of the surgeries, the strength it would take me to sit down in it, then try and get back up, well I would fear being here alone, and not able to get out.... I still love that huge shower, tub BUT ALSO, IT is insane to clean... I keep it mostly clean since it is just me now, and I spray it down with the Daily Shower Cleaner, which keeps it dry, and it keeps me from having to scrub the heck out of it so often BUT, it still has to be cleaned, and it's a job....

I have to literally get into it, to be able to clean it properly, then keeping the mold and mildew out of it, I keep diluted bleach that I put around the places because certain spots if they stay wet will get to be a mess to clean.... so it takes work to keep it clean and free from lots of germs and so forth....LOL My DOGS probably enjoy bathing in it more than I do..I can put them in there, they have plenty of room, and I have my shower nozzle that I use so they kind of get a massage, then I can have them almost dryed off completely before letting them out... so that way they don't slip on the hardwood floors when they get out... they used to chase each other after a shower, and one time Tazzy accidentally fell going around a corner, because her feet were still wet and she had a hip that hurt her for weeks... so I have to dry their feet before I let them out of the bathroom...

NOW AS FOR ME........  I AM TIRED, I FEEL LIKE I AM ALWAYS RUNNING BEHIND... I HAVE MORE PINK, BLUE AND YELLOW STICKIES IN FRONT OF ME THAT I CAN EVER GET FINISHED WITH... I AM STILL TRYING TO GET OVER THAT ONE SPRAINED ANKLE... I THOUGHT IT WAS BETTER, BUT OVER THE PAST TWO DAYS, AGAIN IT SWELLS LIKE A HUGE GOOSE EGG ON THE OUTSIDE, DOWN TO MY LITTLE TOE AND UP MY LEG A LITTLE... I thought it was better.... hahahaha...

 I should KNOW BETTER!!! I NEED to have my pain pump upped, but I also need to see my Rheumatologist... neither know (well my pain doctor found out yesterday) that Mom has passed away, and that NO I am NOT OKAY, BUT I'VE NOT HAD THE TIME NOR STAMINA TO DRIVE TO DALLAS FOR DOCTORS APPTS~~!!!! While Mom was so sick half the time I "forgot" my 3 boluses a day for my pain pump SO it still has more medication in it than it would have had I been using it as I usually do.... but AFTER WATCHING THE PAIN MY MOM WAS IN.... I kind of WENT NUMB WITH MY OWN PAIN I GUESS... even when I SPRAINED BOTH ANKLES THAT SUNDAY OF HER VISITATION, I REALLY DID NOT "FEEL" THE PAIN.... but I WAS IN SUCH A SURREAL, AND SHOCKING SPOT, I JUST FELT NOTHING... MY PAIN, EVEN THOUGH I HURT LIKE HELL, SEEMED NON IMPORTANT.... Thus my reasoning for putting off my own Pain issues....

I AM BEGINNING AGAIN NOW TO KNOW I NEED SURGERY ON MY NECK, I NEED MY PAIN PUMP UPPED, AND WE NEED TO CHANGE MY RA MEDICATION OR DO SOMETHING BUT I just do NOT have the STRENGTH NOR WHAT I FEEL THE TIME... to spend on those things... like a couple of weeks ago, my Chiweenie, Bubs, broke a front nail on a front paw off below the quick... well it was MY FAULT... I always DREAD TAKING HIM TO THE VET... he usually puts up a fight, and we have had to muzzle him one time before... so I HATE HAVING TO DO THAT... so his nails get longer than most women's before I take him... and again they were way too long, and then he limped around for over a week because of one broken so far down into below the quick.... I finally took him in, and the last two times I've held him, and let the assistant just talk to him, while the Vet cut his nails, and we didn't have to muzzle him and in fact he did great.... so I was grateful and am going to try and keep it up and get them cut before they get TOO LONG!!!!



ANYWAY, LIKE NOW, MY OWN PAIN IS HORRIBLE... BETWEEN MY RIGHT HAND, THUMB, WRIST, AND THOSE JOINTS BEING IS SWOLLEN, I CAN BARELY TYPE, MY FINGERS GO NUMB NOW, THEY HURT LIKE HELL, AND THEN MY NECK SHOULDER AND LOWER BACK JUST HURT SO BADLY... IT IS ALL I CAN DO TO SIT HERE AND TYPE...


YET, as I typed in my Title, we cannot just sit down, and take a "time out" for many reasons... it is up to ME, for things to get done... whether I DO IT MYSELF or I HIRE SOMEONE... somehow all of what needs to be done, are things that have to be done, no matter the illnesses, pain and so forth....

One of the guys that was two years older than me died this past week! He was only 58 years old! By just looking at Sammy, no one would have ever suspected he had any health issues... I'm not sure exactly what happened, but my feeling is that maybe he had some type of cancer....

So, we MUST LIVE EACH DAY, EACH HOUR, AND EACH MOMENT LIKE IT IS OUR LAST!!!!!

YEAH!!! A bit "different type of post" Guess I just "needed this" right now!

I was SO PROUD & I THANK MY DAUGHTER AMANDA FOR THE SUGGESTION! I thought I would NEVER be Able to put on a swim suit, much less a 2 piece again…. not after the pain pump, all the surgeries, scars and so forth… I used to love the 2 or 3 I had and wore the tops all the time with my shorts in the Summer mowing… but alas, due to age, and illnesses, and multiple  surgeries, I had thrown those away finally… but she had mentioned the other day these kind! And sure enough I ordered this one from Beall’s and to just came in… I so NEEDED something to feel “good about” especially myself right now… after all that has happened even from the past couple of years, until these past months and all that went on with my Mom, I needed “something” to give me a smile and restore some kind of faith in “me” again… so as silly as that sounds, here are some pics… LOL… I look like “hell” because my hair and no makeup… I had been painting all morning… etc… so for now just the “bottom” part and when I am “cleaned up” with my hair correct and makeup on, I will make more… So, again I thank my dear daughter for the suggestion… NO it is NOT a bikini… but it is so much more than that for me right now….

UPDATES THANK YOU'S AND EXPLANATION AS TO WHAT IS HAPPENING IN THIS NECK OF THE WOODS...

Congrats to My AWESOME GRAND DAUGHTER!!!!!! Heather I am so INCREDIBLY PROUD OF YOU :):) As you move forward in your life may nothing stand in your way, of you following ALL of your Hopes and Dreams! You are truly a Treasure and I could not ask for a better Granddaughter, and those two wonderful brothers of yours ;) Have fun, be safe, and live your life as if you are on top of the mountain! Nana Pam

 

 

Just a quick "Hello" and thanks all. Today is such a mixed day mentally, physically and emotionally.. I SO wanted to be at my GRANDDAUGTHER'S GRADUATION TONIGHT NEAR CORPUS, but alas with Mom as she is, and the WEATHER making life hellacious for everyone just about, I had to postpone my trip. Then I hate to whine, but MY BACK, LEGS, BUTT AND HIPS ARE ON FIRE!!!! after I got Mom in from the hospital night before last... dumb move on my part, but stubborn I guess shows me I should ask for help... at the moment I did not have one clue who to ask... but she is resting well. The aide came and got her all cleaned up, and I gave her all of her "comfort" medications, got things done there, and I just had to come to "home" for a bit, for the puppies, for me, and I need to get off my feet at least for a while.... love to all... and I am totally more than exhausted... so if I don't post, or accidentally don't answer the phone etc... I am just totally out of any "brain wave" at the moment.... 

Before it slips my mind, A HUGE CONRATS!!! to my incredible granddaughter today!!!! HEATHER YOU ARE SUCH A WONDERFUL YOUNG WOMAN, AND AS YOU STEP OUT INTO THE WORLD OF COLLEGE AND BEYOND, MAY YOU FIND ALL OF YOUR DREAMS COMING TRUE... I SO WISHED I WAS ABLE TO COME, BUT OF COURSE BETWEEN GRANNY STEELE, AND NOW THE WEATHER SO HORRIBLE, I HAVE TO POSTPONE, BUT MY HEART AND SOUL WILL BE WITH YOU THIS EVENING!!!! Love to you... and love to your brothers, Logan, and James... and also to your Mom, Amanda Batson- Matheny and Dad Jimbo! 

Update on Mom the Alzheimer's, getting home from the hospital and of course hurting my back again, and so forth....

You are all such a blessing, and know you are so loved and appreciated... Mom and I had "hell" getting into the house last night. They did not officially discharge her till like 6PM! And I had to get her into the house by myself, so with her having having both back and front, I chose the back, with two lower steps, and using her walker, we very SLOWLY and with a few "choice" words, LOL, made it into the house, and finally to her bed. Hospice DID come by last night around 7PM, I was so shocked, I did not expect a nurse by, plus they had a courier bring some stronger pain medication for her, and now all of her medications will come via courier.... so that will be easier... of course now Hospice has taken over for the doctors etc as far as the dementia, and anything "to do" with that diagnosis, etc for now.... so I am hoping it will "settle" down a little... I really did a huge NO NO though - I injured my LOWER back, which already needs surgery, between all of the walking yesterday back and forth, our hospital is laid out so stupid, and you have to walk what seems like a mile just to get to patient's rooms, but then getting Mom in the house, I did a real number on my lower back and my neck.... I got her settled in and came home very early this morning to do some stuff done here, that I have to do and then I will head back over there, because her Social Worker, Aid, and so on will be coming sometimes after 8AM I gather... so it will be another day of hell I think, just being up on my feet, and getting stuff in order and so on... but now the Ensure, pads, Depends, and any and all "medical stuff" she needs, they will automatically bring us. and I no longer have to be picking those things up, including I gather most of her "meds" ... not sure if it is all of them yet, but ones that go along with the hospice diagnosis they will get and have brought to me... which is some help... then they have a list of people I can have either come "sit" with Mom in the week, night, day, etc for a few hours, some volunteer, some I will have to pay, but I can still go with ""Home Instead" which is a "sitter service" BUT they will have someone there, and I don't have to worry over if I get sick, or need to be away, and someone HAS to be with Mom, even though it means paying for them, they are bonded and so forth, I've met with one of the main case workers already.... and it is MUCH less although not cheap, than putting her in a nursing home, which means about at the lowest 3,000.00 a MONTH for room and board.... so hopefully we can keep her at home, where she REALLY wants to be, and hydrated, and well enough to avoid the hospital again... I can't say how much I appreciate all of your thoughts and prayers... and I need to get busy getting things done here, etc... but I will post when I can... Love to all of your guys and gals, Rhia Steele "All things Autoimmune"

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

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??????

"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/

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

Saturday's New Addition of my Newspaper "Life with Chronic Pain and AI Diseases" - Great info in here this morning!

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

PLEASE HELP THIS MONEY TO ALSO HELP THOSE IN THE CHRONIC PAIN COMMUNITY - SIGN THE PETITION

 

https://petitions.whitehouse.gov/petition/utilize-part-1-billion-granted-toward-opioid-epidemic-help-chronic-pain-pandemic-america

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.... 

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.....

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

Nightly News, the CDC and Those that have NO CLUE what "Chronic Pain" and trying to Live is all about!

As I said on my other post, I was so mad at the Nightly News with Lester Holt last night I could have screamed! They only tell a "piece" of the story, NOT the stories of us who would not be able to have a "life" or any quality of life if we were not able to have physicians help us take our pain down to where we can "stand it"... For ONE NO medication "takes all of the pain away".... but it does give us a place where we can "live" with it. It makes it bearable, most days. And for them to sit there and speak like this is something that is just a "surgery" issue etc...without even mentioning how many of us would not be able to take care of our families, work, do anything at our homes, nothing... we would only be able to sit, lay, or try and "live" with severe pain, that is what I call intractable and unbearable! without my great physicians and my medications, and that is not just pain medications, but my RA meds, my heart medications, Lupus medications, and so forth, I would have no life, I would never be able to take care of me, and certainly not be able to somewhat help my Mom... and try and do advocacy work, and write... my life would NOT be life but living hell! I am seriously thinking about writing the Nightly News and telling them how I felt about their "one sided" view of this situation.... and I have to wonder "whom is lining" whose pockets, when it comes to the CDC, Congress and all of these people that have NO CLUE what it is like to have a disease that brings on such an amount of horrid pain daily... they would think differently if it were them or one of their loved ones...

http://www.usnews.com/news/business/articles/2016-03-15/cdc-guidelines-aim-to-curb-painkiller-prescribing

This is what I am speaking of on the Nightly News from Last night March 15th

http://www.nbcnews.com/nightly-news-netcast/video/nightly-news-full-broadcast-march-15th-645344323672

I sent my email to the Nightly News about this story last night. I hope you also take a moment to respond!