Weather, Chronic Pain, Pain Pain and MORE PAIN!

Any and everyone of us here, there and yonder, knows how much the "weather" can effect chronic pain. Other illnesses such as Lupus, RA, Osteoarthritis, Joint replacements, cervical spine surgeries and problems, and many more illnesses are "effected" by weather.

Oddly enough, it was not that many years ago, that I would tell my doctor(s), not that long ago, ONE doctor saw you for just about everything.... that THE WEATHER MADE MY MIGRAINES WORSE! Back then, and as I said NOT that long ago, they would look at me like I was nuts, bonkers, and just needed some reason to "complain", go the the Emergency room for the dreaded Migraines that plagued me from the time I was about 17 years old, until I then began having "Lupus Migraines" about 10 years ago.

Lupus Migraines, as I call them are an entire different "ball game" from regular Migraines. Used to pain medication worked for the other migraines. Even though I had to fight tooth and nail to get it often times, my severe headache, nausea, the grogginess, the feeling of wishing you could remove your head from your body was horrid. Yet pain medications handled the problem, most of the time.

Then when I began having Lupus Migraines, no amount of "regular pain medications" in the world will do a thing for them. I must have a huge injection of corticosteroid, and then 10 to 14 days of Prednisone, the "step down" dose, in order to get rid of that type of Migraine.

Fortunately, getting that help is easier than having to go in for any type of narcotic pain medication. Yet, I still have to have those also, for the other "many chronic daily pains"I dread, must still have my pain pump, and I have pills for "break through" pains, especially during the times when the weather acts nuts, causing it to reek havoc with my entire body. I "had the surgeries" to help rid me of the other pain, from the joints that have just disintegrated over the years. I tried to tell doctors way back in my twenties, that I had "genetic arthritis". Again, although not that many years ago, they just didn't want to accept the fact that "someone as young as I was" could have that bad of joints. Yet, it was true. I tore cartilage out of my knee at 15. But, by the time I was 21 it needed surgery again. Then the other knee, my elbows, my shoulders, all began giving me problems. I had them injected more times than I can count.

After the many, many tests, scans, injections, medications, even was hospitalized for a few days to try a medication that was "dangerous" to my heart, and it didn't do one thing for the headaches.

After having several more joint surgeries by the time I was 35, I began getting through to some doctors, that these problems were not all imaginary, but were truly issues that I probably was born with. I even had double hernia surgery about 4 years ago! The surgeon told me I was probably "born" with those areas "weak" like some infant girls are, and after years of walking, lifting, bending, picking up something heavy and so on, that they finally became fully herniated, and had to be repaired. Even that was a nightmare. I could Feel them, I could SEE them, yet 3 doctors and even a sonogram didn't pick them up. I finally went to a surgeon I trusted and HE could feel and see them. HE knew what to look for, and he also was well aware of some women, were born with those spots weakened. And some went on to develop hernia's that needed repair.

Usually you don't catch me "lying around" or doing basically nothing. I fully believe that laying around, even when you feel like "hammered hell" can just cause you to feel worse, hurt worse, and give you a lack of energy, lack of muscles, an you question, which is better? Am I harming myself worse, by getting up and doing  things? Or am I better off "working through the stiffness, pain, swelling, and all of the side effects that go along with these illnesses?   

What sucks is that although I usually DO feel better up and moving, even if it is slowly, it still at times takes all the energy and will power I can muster these days.  I have people who stare at me when I park in the handicapped place. It's still hard to have "invisible illnesses". As much as is out there about so many of us suffering, with these horrid diseases, yet there are still "uneducated", "mean", selfish people that want to make fun of, or cause us more grief that we already deal with on any given day. Just sitting here trying to type had caused my wrists, my upper back, my hips, all to hurt like hell.

So, me now trying to sit down and write a 3rd book, when I need to spend HOURS typing it out, almost seems as if it will never happen.                                                                                                                                                   

Arthritis Foundation and Washington DC March 2018!

It's Time to be United! In the Fight Against this horrific life altering diseases

It is almost here! Another year gone by and time to get to Washington DC with the Arthritis Foundation to get on the bandwagon and get the House of Representatives off their "kiesters" and on up to getting a Cure for RA, Osteoarthritis, and all the many other diseases that an be "packaged" into these... we keep hearing more and more about "pain" and now this "opioid crisis"... 

If there was a "cure" or a way to "regenerate" the damage that so many of this horrid illnesses cause some would NOT NEED pain medications!!!

So, those who get to go, tell them YOUR story, your children's stories, or whomever you are there to represent!

Fourth of July Already here, Time flies by too quickly, Cervical neck ongoing getting well over surgery, lumbat/sacral surgery, osteoporosis,bursitis.RA,osteoarthritis, and living....

SUNDAY ALREADY! SEEMS IMPOSSIBLE HOW THE DAYS, WEEKS AND MONTHS ARE FLYING BY SO QUICKLY. I am so "bored" with everything. I did put up my window "cling" that looks like stained glass. I love it, found it when I first moved into this house and put it on my front windows. It has been there about 10 years or really I guess more like 11 years, and it still looks awesome. So, I decided to put it on more windows, especially those that face where the sun comes in especially in the evenings. It looks wonderful and comes off easily, never fades, and does look like stained glass. I have 3 brand new mini blinds, that I've had for weeks for the office. One of mine was just about to come to pieces so I ordered all three new, so they would be the same. The others were old and getting to where even trying to wash them would be nuts. 

The less expensive ones are much to difficult to try and wash, and it is less hassle and cheaper to just buy new ones, since these have probably also been here 10 years or more. Right now after the rain from day before, and the cloudy weather over the past several days everything is so wet, between rain and dew, it's hard to get outside. I thought about going over to the walkway the city built buy one of the small lakes, not far from me... I broke down and bought new athletic shoes, Sketchers, a couple of weeks ago to walk in. I have some but they were really not enough support to walk very far in, so I broke down and bought better ones since I really need to be walking as much as possible. But, my street is so damned bumpy, and narrow, it's difficult to walk down it, and not get ran over. 

People run the stop sign right here at my corner one house down from me, and it's a wonder someone has not killed someone as fast as they drive down this street, especially with the kids out of school and the ones on their bikes, that are too young to really be riding out there with no parent supervision, but I see it all the time. A week or go, I looked outside and one little girl, about maybe 8 to 10 was riding right down the middle of my front lawn!!!! I was so pissed, and stepped out and told her I had better not see her, nor any of her friends riding through my lawn again! Parents don't watch and don't care, they just let them do as they please. It was so rude, and I told her, don't you know it's rude to go through someone's yard without permission? She just stared at me, and finally rode off. 

Anyway, I am not sure about the whole hip and thigh pain. I am thinking now since "both" hips have pain in them, and almost in the same spot, my left one I can trace the pain in it... and I think I may have either bursitis in both of them (which I have had before I broke the right hip) and have had them injected before, a couple of times. In fact about 4 years ago, I did have severe pain with both of them, and my orthopedic surgeon at that time, did inject the both of them at the same time. A bit later, my new Orthopedic surgeon, who does my neck, and did my right shoulder replacement told me it is my lower back making my hips hurt, and L-5 and S-1 and bursitis may or may not be the problem. I surely don't look forward to any other spinal surgery, especially lower spinal surgery, since so many horror stories come out of back surgery. 

But they have improved their process, the way the do the surgery, and what they have including "artificial discs" they can put in place of discs that have ruptured. That is what they did with my neck in the first surgery. One of the levels, he put a disc in place. The other are "fused" with cage and chips of bone from the bone spurs I had, rather than using artificial materials, or donor bone, they try and use your own, even if they remove it from a hip. I read they can do that, but with me having such severe osteoporosis, I imagine they don't take a chance of getting bone from any place else on me. Of course after the fracture to the right one, they would not touch it, but my issue is after reading, I am wondering down the line if I may have to have a total hip replacement, where he repaired it with the gamma nail and screws. I've read and that maybe what is already happening, that hip is developing arthritis in it, after the fractures and repair. 

So, between bursitis, which can even be "infectious" where they have to drain it, and probable arthritis, that could be what is causing pain in the right one, and my left one maybe effected by either osteoarthritis, or even the RA, which is what my 1st cousin had, RA that caused him to have finally both hips totally replaced. I've been trying to keep up and keep busy, but when you cannot or should not do things where you have to hold anything over your head heavy, etc, it's difficult to find things to do.... after having my neck in the brace for so long, I have come to realize how much you do that effects you having to move your neck up, down, sideways, and every which way, from driving, to putting up these blinds, to even sitting at the computer, potting plants, and even laundry, cooking, cleaning... you name it, even taking a shower, or like me wanting to have my hair cut, she usually has to have me bend my head forward to get it short and cropped in the back, but I need it cut so badly, so I may have to have her improvise, cut it and just do as much as she can without me having to bend my head forward etc... I don't think I can go another week with it as crappy as it looks. 

Honestly, I've almost thought about "razoring" the top and sides myself. I do usually when it is cut very short, and she razors it. So, I've thought about using mine and just get the horrible ends off of it, until I can see her. I just don't want to "chop" on it too much and then she can't cut it like I want. I let it grow out again longer, but now with it so hot, I like it really cut short... where I can put my "goo" on it, spike it up and go... no brushing, hardly no blow drying it, by the time I wash it, towel it off, and run my fingers through it, it's dry and I can put my "goo" in it and go.... no fuss no muss... I love it that way, and the way it is now, I am really better off doing it like that, especially if I am having more surgery in the next few months... I am really not sure what the hell I will do about my lower back... when it gives me so much hell, and I am in so much pain, I want to sit in the floor and scream, cry, and feel as if I am going insane, I want it "fixed"... but the idea of a lower brace, probably much more "time healing, and getting it well enough to do things," then I want to "back off" no pun intended, and say I will just put up with it... but I also know it won't get better over time... it will just get worse....

NIH CUTS IN SPENDING??? TAKING MONEY OUT OF RESEARCH FOR US WITH SO MANY ILLNESSES, My own priorities and doctors, Rheumy visit coning & Neck Surgeon, and updates for all

Been a very BUSY and beautiful weekend for me! I FINALLY got that OLD A/C OUT of the window and cleaned that mess up. In fact, I went out this morning to take the trash to the road and someone had already picked it up and taken it thank goodness! I mowed my front lawn, knocked down about 5 BIG old WASPS nests from last year! BUT, those darned things showed up this weekend! I've been waiting, and are already trying to build nests! I had one can of wasp spray but went and bought 2 MORE, which will probably NOT even be enough. The honey bees are also about to drive me nuts.... I am having to watch them, because they may try and rebuild the hive in that old bus. The guy that came and got them last year told me to watch out this time of the year. If I saw many, then let him know and he would bring a box so they would go in there rather than building in the bus again. It took him about almost a month all in all last year to remove all of the hive he could get out, get the QUEEN then all of the workers etc. He came back over like 3 weeks time, and kept getting more and more that he waited to come into the hive, and he got LOTS of bees. He said he felt like that may have been 50,000 or MORE when he finished up. It was scary but amazing! 

But, the damned thing "follow" me around. Yesterday I was working on my porch (I ALSO GOT OUT ALL OF MY HOUSEPLANTS ON THE FRONT PORCH) OMG, TWO OF THE HUGE ONES were difficult, but I have that dolly I can put them on and take them out on it... so I did that, weed eating more in the back lawn, sprayed for weeds again... put out more moth balls around the house and the storage building,did laundry, went to the market, I never made to washing the car, or getting to the cemetery yet... I HAVE THE FLOWERS, for Mom and Dad and my Grandparents all, but the weather was terrible at first, then the wind has been so bad, and that is fine for my parents... but my Grandparents are located where the wind is terrible so I have to actually tie down and anchor the flowers around the bottom of those "vases" on theirs so they will stay in... the flowers have been in the back of my car now for weeks... maybe I will get to that either today or sometimes this week. I have my doctors appt tomorrow FINALLY with my RHEUMATOLOGIST!! When they see how TERRIBLY MY THUMBS AND FINGERS, KNUCKLES ARE SWOLLEN ESPECIALLY ON MY RIGHT HAND I HOPE THEY DO SOMETHING. 

I am getting to where I lose more and more use of that hand daily. My grip is terrible. I barely can carry anything with that hand, and it stays so stiff, sore and swollen... if I get out and do anything, that involves my hands and fingers/wrists, they will swell and just almost not bend they are so stiff. BUT then next week I see my neck surgeon and my Cardiologist, and hopefully I can get the neck surgery done very SOON! The ONLY thing that SUCKS, IS that I MADE A RESERVATION TO GO TO WINSTAR on SUNDAY, NEXT SUNDAY, and my DAMNED APPT WHICH I DIDN'T THINK ABOUT WHEN I WAS MAKING IT IS ON MONDAY! So, I am not sure if I will change one or just "time" the drive back from Winstar to my doctors office, and drive back from there and see him. He is in Dallas, but I will have to really watch my time due to Dallas Traffic.

 It will be kind of mid-morning, my appt with him is at 1:15, so the drive usually takes around 2 hours from my home... so back to that Dallas area, would probably be about the time I would leave the Casino anyway. ALTHOUGH, NOW they are showing we MIGHT HAVE LOUSY WEATHER!!! OF course, always happens when I have something to do that means Dallas driving or if I make plans to run up to Winstar!!! GGGRRR... but that is TX weather this time of year. Anyway, I have got to look some stuff up and have 50 things, on my list... of course I maybe lucky to get 2 or 3 of them done today LOL... but hope all is well with everyone!!! BY THE WAY, DID EVERYONE HEAR ABOUT THE PRESIDENT WANTING TO CUT SPENDING WITH THE NIH???? THAT MEANS LESS MONEY TO HELP WITH RESEARCH TO CURE MAJOR LIFE THREATENING ILLNESSES! HE WILL build a damned wall, BUT does not CARE ABOUT OUR LIVES... WHAT A DAMNED JOKE! It makes me sick to even hear his name, what an ass... I SAID THAT IF HE WAS ELECTED WE WOULD BE IN A WAR IN LESS THAN 3 MONTHS, AND HE WOULD SCREW UP MEDICAL ISSUES FOR US... AND IT APPEARS MY PREDICTIONS COULD BE HEAD ON STRAIGHT!

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.

ANYONE LOCALLY - (Ellis County TEXAS) Who maybe able to assist me with some painting and carpentry work!

I "realize" this is not a "usual post" for here, but I felt as many of us that are here from Ennis, may be able to point me, or point someone to me to help me out with these things. Mom passed away in June as many of you know from an extremely aggressive type of dementia. She was "okay" in January, and by May, was in bed, in diapers, and had no clue who I, nor herself was, or even could get out of bed. So, here is my "post" - anyone who maybe able to help out, please let them know to contact me - Thanks so much Pam Ravishing Rhiannon Steele -

I've just POSTED in a couple of Ennis TX and Ellis County TX posts about needing to hire someone to come in & help me finish the inside painting of the house I am working on. My Rheumatoid Arthritis/Lupus are keeping me from doing this myself, as I wanted to.I can barely hold a paint brush right now. by the way, the house is barely 1,000 sq. ft. & is only 2 bedroom, one bath. I've picked out all of the paints (or most of them and have began how I want it to look.)

 I am looking for someone to put siding on the one car garage, put up some new handrails on the front porch (about 4 or 5 steps) and then put one on the back porch (about 2 or 3 steps) down. I am furnishing ALL of the materials. I will want a new garage door put on the garage also. 

Those are my "MAIN" things If you know of anyone is my area, who can paint & do a bit of carpenter work, is reliable, please tell them to message me here, OR send me an email to redstangblonde@yahoo.com. I will keep an eye on that email address for anyone, who may help. I thought I would finish the painting myself, but there is just no way, with my health issues, I can continue to do some of it, but I need help. Thanks so much! 

There are some trees and limbs that need to go and an old piece of bus on my back lot, that is FULL OF BEES! They have been here all of the early Spring and Summer, and I've not been able to see the hive, but it must be huge! So, BEES and BUS can go, if anyone wants to haul it off for the scrap metal to sell. 

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

Brand New Clinical Trials Sponored by Cure Click One New for Rheumatoid Arthritis and Osteoarthritis, Cushings, CLL,COPD, Pediatric Asthma, Diabetes Trial Search, Alzheimer's & More coming soon!

I want to give out the great news to all of you who suffer from RA and Osteoarthritis! There are two new Clinical trial Studies, for each of these horrid illnesses.

The Information is below, and will also be on my pages of my blog around where all of the other great clinical trials are. Actually several new ones have been added just in the past week or so, including  Chronic Lymphocytic Leukemia (CLL) including a new video link below, Pediatric Asthma, Diabetes Universal Clinical Trial Search, and still there are ones for COPD, Cushings Syndrome, and Alzheimer's Mild to Moderate.

There are also upcoming new Clinical Trials very soon on other very important illnesses that plague our nation, and the world..

So, below are some links that you can go to, and find out more about whether the clinical trial is in your area, if you qualify, and also spread the word to others who maybe interested in some of these. Many people find they are better, some even "cured" by certain clinical trials, and most cost the patient nothing, and in fact many also compensate the patient for their time, their gas money and so forth. So, please take a look or pass these onto others you may be thinking would benefit!

http://curec.lk/1hKk5XN

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http://curec.lk/1QkoLgA

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http://curec.lk/23JLHmp

http://curec.lk/1SfAHn2 

#cushingsdisease #cushingssyndrome    #patientpower, #arthritis,  #RheumatoidArthritis, #arthritis365, #Rheum, #osteoarthritis, #asthma,#CLL

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.... 

YOU TOO Can be a Virtual Advocate during the AF Summit on the Hill 2016!!!! YOU ARE IMPORTANT!!!!!

Arthritis Foundation Summit Begins Monday in DC! YOU TOO can be a "Virtual Advocate"!!!!

http://www.arthritis.org/about-us/news-and-updates/arthritis-foundations-advocacy-summit-fights-for-awareness-and-cure.php

Advocate 101: Join the Movement

What is an Advocate?

Advocates help improve the lives of people living with arthritis. The key to success in changing government policies and funding is through grassroots advocacy and our advocates are the Arthritis Foundation's chief resource for making positive changes in Washington. Click here to join the movement!

What does an Advocate do?

Advocates make their opinions and personal stories known. By signing up, you'll receive Action Alerts in your inbox when important arthritis-related issues are debated on Capitol Hill.   In 5 minutes or less, you'll be able to write your elected officials and tell them their constituents care about arthritis and how it impacts our communities....(see the URL for more information...   

http://www.arthritis.org/advocate/advocate-101/

Sponors for the 2016 AF Summit!

YOU CAN Make a DIFFERENCE WTH THE ARTHRITIS FOUNDATION ON CAPITOL HILL FROM YOUR HOME!

I share this with you! Since I will not be able to attend the AF Summit on Capitol Hill due to having cervical neck surgery, I am definitely going to be an "advocate" online! This link takes YOU to a letter, that you can personalize So, even if you can't make it to the Summit, you can and tell your own story about how AF is effecting you, your family and so forth. I sent mine in yesterday! ALL of these will be taken to Capitol Hill and given to Congress at the Summit! YOUR can MAKE a DIFFERENCE even from your home for the AF Summit on Capitol Hill!

https://www.surveymonkey.com/r/GVQHGDV

HONESTLY, I FEEL BADLY THAT I AM NOT ABLE TO BE THERE THIS YEAR AND REALLY WANTED TO ATTEND! I LOVED IT IN 2014, AND HAD HOPED THIS YEAR THINGS WOULD ALLOW ME TO GO. MY NECK SURGERY IS ONLY A PORTION AND COULD HAVE WAITED, BUT I ALSO HAVE A MOM, WHOM I FEAR COULD BE SUFFERING FROM SOME TYPE OF DEMENTIA, OR WORSE ALZHEIMER'S. THINGS ARE NOT GOOD AT THIS POINT, AND I FELT SINCE I AM HER "ONLY CARETAKER", I COULD NOT LEAVE HER THIS TIME. SO, I MADE THE CHOICE TO TRY AND DO EVERYTHING I CAN TO "MAKE A DIFFERENCE" ONLINE, THROUGH SOCIAL MEDIA, TO SENDING LETTERS TO MY REPRESENTATIVE BARTON AND TO CONGRESS, AND LETTING THEM KNOW MY STORY! 

YOU TOO, WILL MAKE THAT DIFFERENCE. YOUR LETTERS ARE ALMOST AS GOOD AS BEING THERE ON CAPITOL HILL!!!! 

 

The Arthritis Foundation and Arthritis Introspective - Two Creations as One to Give Us Advocates a "Voice" in Our local communities

This is only a tip of the total iceberg from a teleconference I attended last night, but I am totally thrilled about the idea!

The AF has teamed up with Arthritis Introspective to finally create ways "we" as advocates, and Ambassadors and so forth can have our own local community Outreach and Groups available for our towns and counties. I am totally thrilled about this idea and have wanted to do this now for years. So, now seems like the time to get involved in this.


Here is the link to the URL of the non-profit:

http://www.arthritisintrospective.org/

They have a Facebook Page also:

https://www.facebook.com/ArthritisIntrospective

I will be posting MUCH MUCH MORE ABOUT THIS OVER THE WEEKEND!

Busy Time and Trying to Keep my Head on Straight, Keep the Brain Fog from setting in, getting closer to the pain pump reclacement surgery, the horrid, almost Unbearable Pain with my RA/Lupus, Holidays a NEW Fur-baby! and so much more....

New Direction for my Next Book below...

I have LOTS of things that are on a "deadline" in the next couple of days, but I wanted to share that a very dear long-time friend of mine and I were talking earlier this week, and we were talking about our lives, the younger years, and so forth. As I began to kind of "catch her up" on some things I really have never spoke about much, as far as how my "home life" was, I have an extremely controlling Dad, and I love him, and always will, and miss him even after 10 years since he passed away... but in many ways he, "stifled" me from "being ALL I wanted to BE"... his age, the times he was brought up in, his "views" on women, as far as college, careers... and as we talked, my friend said something that
inspired me about my 3rd book! 

I do NEED to tell my "story" about my life, even during my much younger years... especially as a teenager, and how much I was "kept" from doing all the things that the other kids in High School were doing.... he was more than overprotective"... and in many ways, it truly has "molded" my adult life at times... and it is a integral part of my life, and all that I've endured.... even the abuse later from an Ex-Husband (not my present one, Jim has never hurt me as far as abuse), but my daughters Father... anyway... all of that and more is a story that I should tell... for I am sure many others have dealt with the same things, yet they may not speak of it either... so I do have a NEW DIRECTION, AND A NEW VOICE, whispering me to make some additions, and/or changes where my 3rd book shall go... I think it will be something that many will want to read... Thank YOU, and you know who you are... I am so grateful that you have became once again a very dear friend.... whom I trust, and I admire...

The New Addition to our family - "my new fur-baby" Dennis!

 

 

Wanted to share a few pics of the new “fur-kid” addition Dennis, and Bub’s! I got Dennis yesterday evening, and brought him home for a “weekend trial”… but it appears they are already best friends… that is the most I’ve seen Bub’s play in a very long time! I think “if Mommy” me, can keep up with the both of them, I have my “Christmas puppy”….


Latest Addition of My Newspaper "All Things Autoimmune" - great article from pain, Lupus, and so much more!

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

 

 A latest Pic of Rhia!!!!

Much other things going on... but I must run out for a bit... PLEASE keep an eye out thought... I have an EXTREMELY important post for everyone that I will put up later today or tomorrow!

 

Updates from the Arthritis Foundation - RA, Supplements, JRA and more...

http://blog.arthritis.org/living-with-arthritis/cope-with-arthritis/

Support Groups and the AF

Herbs and Supplements

http://www.arthritis.org/living-with-arthritis/treatments/natural/supplements-herbs/?utm_source=enewsletter&utm_medium=dedicated&utm_campaign=supplements

Other therapies

 

http://www.arthritis.org/living-with-arthritis/treatments/natural/other-therapies/ 

 

News and Updates from the Arthritis Foundation!

 

 

http://www.arthritis.org/about-us/news-and-updates/

How MUCH MORE Can one person stand?! Chronic Illness, Dealing with Life's other issues, & not just losing your mind or collapsing in it all....

Honestly gals and guys... I am concerned that I am either getting "worse" when it comes to the RA,Lupus, and so forth... or I have something else really going on with me... I've just had all kinds of "new" symptoms... first of all, I am having moratl heck with my fingers, worse than ever before. My right hand has a couple of very swollen places between my middle finder and my "pointer" finger next to my thumb. Plus my thumbs are really bad again. Plus, I woke up in such severe pain in my lower back and down my legs this morning, I really thought I had a kidney stone again. It was almost like a "cramp" or what we used to refer to as a "stitch" in your side. But, rather than it kind of working itself out, it went on for a couple of hours, and even now it is not the best .... plus I have this worsening of the "weakness" type o feeling in my legs, almost like they are jello and feel as if they could just "collapse" when I am up walking. I've also had BOTH of my ankles again not so great, but my right one as always, is so swollen and hurts like I sprained it or something... and I still have that "odd" kind of pulling pain underneath my right arm and into my arm pit then kind of a bit around to my back.... my stomach is just a mess... as if I was having or trying to have "spastic" colon issues, but it has been 20 plus years since I had one of those attacks. I used to have them when I was younger and of course they always called it a "nervous stomach" back then. But, it is of course down into my lower intestines, like they are trying to cramp up... and then there is this almost too weird to try and explain, "severe" fog... brain fog, memory fog... and now it is just so bad... I walk around almost as if I am in a daze... and my memory is horrible the past couple of days... but I feel almost "detached" from myself... and I've had that happen a couple of times in the past 10 years or so... where you almost feel like even though "you are here"... you almost feel as if you are looking "down" upon what is going on... and really not "in" the situation,., I know there are terms for it... kind of one of those "fight or flight" responses, that our "mind" uses when we are way overly stressed... and when that "breaking point" begins to be felt... then we seem to "detach" from it all, and become a "quiet observer" because it is just ALL TOO MUCH to deal with... thus it is a mechanism to keep us from going completely bonkers... and my "LISTS of LISTS"   keep getting longer and longer, yet I am further behind more every day.... It seems EVERYTHING right NOW is "priority",.. yet none of us can do 100 things all at once, and really "survive" going nuts....plus the night terrors have been so bad, this place of feeling so totally like a "failure", feeling like I don't "fit in", that people "dislike" me, and they look down on me, because I am not "enough"... Just about every night terror I have has this same theme... either I am "not good enough" for family, or some job, or some group of people I am around, or my "spouse".... hahahaha ..... now you see where I am coming from... I feel that now my life is HALF over or MORE THAN half over and I'VE NOT ACCOMPLISHED  a damned thing I have wanted to... the list of things that my home needs is endless... now many of those that I would LOVE to be able to do... I know are not feasible for me to even give thought to....yet when I get so "bent" as I love Matchbox 20's song, "Bent"  - I feel exactly that way "bent"... I have always thought no matter whether my family, a friend, someone I worked with, associated with... or anyone for that matter, that I am just "not enough", "not worthy",,, I've NOT done, this, that or the other... and that I SHOULD be accomplishing so much more... and the more I try to do, the more BEHIND I feel as if I am..... BUT TWO GREAT THINGS!!!!!! NUMBER1 - I GOT MOM'S INTO PT! And it is here in Ennis AND THEY TAKE THE INSURANCE!!! whew!!!! NUMBER 2 - She is scheduled to go see the pain doctor next Thursday so they can schedule the injections... SO HOOOORRRRAAAAAYYYY!!!!! THAT were two of the things I was most concerned about... so those are good to go.... NOW I MUST being to decide WHAT TO DO ABOUT MY LUMBAR/SACRAL spine fusion!!! I "THOUGHT" I MAYBE able to put if off for a while... but, as badly as the pain has been even worse than before the test was done... I don't think putting it off is an option, well not for long... I think just as my pain doctor said, get it fixed NOW... for it will only get so much worse, and I do not want to wait until I am even worse... then my recovery time OR even (and this may happen anyway) I think when he does surgery, it will be a HUGE worse MESS than any test showed... it never fails for me... it always is like that.... anyway.... I am still knee deep in stuff to do... but it am just totally wiped.... more to come...

More Great News from the AF and FDA - truly making headway!

 

Awesome News Once again from The Arthritis Foundation along with the FDA!

 

 

http://blog.arthritis.org/news/fda-osteoarthritis/

RA News, Vets and Chronic Pain, & more headlines of the Medical Issues of Autoimmune, Chronic Pain and Chronic Illnesses

http://www.medpagetoday.com/Washington-Watch/Washington-Watch/52086?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Vets and Chronic Pain above...

http://www.medpagetoday.com/MeetingCoverage/EULAR/52084?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Phase III in New RA Medication sees great results...

Baricitinib Shines in Phase III for RA above...

http://www.medpagetoday.com/Rheumatology/Arthritis/52082?xid=nl_mpt_DHE_2015-06-12&eun=g773630d0r

Pain Sensitivity Spikes in OA Patients With Sleep Problems - link above...

The Arthritis Diet | Anti Inflammatory Diet | Arthritis Diet

The Arthritis Diet | Anti Inflammatory Diet | Arthritis Diet\







I am in the process of trying this "diet" to see if I can "fight" some of the inflammation that has just plagued my body, left, right and center.....

Sonograms!!?? Why have Doctors NOT already done these???

This just totally blew me away! I've fussed and griped for YEARS about how each and every time I've had to have a "joint surgery" and how badly I was in pain; plus do to my joint history, the, the DJD. the DDD, the RA, Lupus and the list goes on and on, when I go in with a joint hurting, it usually means we are destined for surgery, maybe even replacement. I recall when my left elbow gave me so much trouble, and not long after my left shoulder began to drive me insane with pain, loss of range of motion, stiffness, and the entire gamut. I went through all of the tests, the MRI's. the CT's, with and without "contrast", X-rays, medication and nothing usually worked.  I may have some relief from a corticosteroid injection into the joint, and that may last for a day, month and sometimes even a year. On my right shoulder, I had several rounds of injections, way before we did any type of arthroscopic surgery. Yet, even though all of those "expensive" tests, that were supposed to be the "gold standard" when it came to diagnosis, may show some damage, spurs and so on, BUT, when every surgeon that did my various surgeries actually got to "see" the massive amount of damage in the joint, they then understood why I was so adamant about NOT using those tests as much, as more "heavily weighing" from my long term symptoms, them actually getting worse than ever better, and that there much more damage in the joint than any type of scan, MRI, and so forth ever would show them. In fact, my orthopedic surgeon who did both my complete right reverse shoulder replacement and my 4 level cervical neck surgery, told me himself. The damage was so deep, and it was extremely bad, but there was no way it would have shown on any test. Sam thing with my neck, it was the same with my elbow on the left, my shoulder on the left, and both knees. It never failed that the doctors would always tell me that what they actually saw by doing the surgery, was far more worse, than any type of a scan, MRI and so would have ever shown.

I have also said that I felt that any "scan", MRI, X-ray and so forth is only as "good" as the person it with experience and knowledge to read them. I can just tell, from all I've heard about and read, that often things are NOT found, or they are far worse, than what the "radiologist that read them said.

It just stands to reason, if someone has the "education" yes, that is a huge part of it. But, when you are looking at something as complicated as the inside of a joint, or any organ for that matter, if you don't have not only the knowledge but experience to totally "see" all of that entire ordeal, then all too often, I felt things were ""missed" because of whomever read them, didn't have enough experience or possibly training, to not miss something. Again, this is not just joint related but any type of scan, and so forth, things could be missed, and could cause serious issues if they are not caught in the beginning.

Same way with "blood work"... they are coming to find with many diseases, that all too often that "blood work" again that is supposed to be another "gold standard" for diagnosis, MAT NOT BE accurate. It could have been not processed quickly enough, or no refrigerated in time, or blood work has been known to get "mixed up" and maybe what was read had nothing to do with you. Many may not realize it, but on some of the very complicated blood work that they do, it may be actually "shipped" even out of state to be processed. Some of these tests either take extremely high dollar equipment, time, and the person to make sure it is done accurately. Again, there can be a mix up, something not processed in time, left out too long, or any number of things could "go wrong" before the actual test is ran, and the outcome that is "right", could be wrong.

I know I am NOT the ONLY PERSON who has been through this very issue. Even when I had the double hernia's. I had 2 doctors, a sonogram tech, a PA, ALL miss the HERNIA"S!! I knew they were there. I even told them exactly how to locate them, and why they would not locate them if I lie down, they would kind of "settle" down into my abdomen, and then they were difficult to locate. Yet, I have one huge lump on the left, and the one on the right had just began to show. I finally went to a regular SURGEON. He "found" them immediately and said I needed to have them both repaired before they got worse. The one on the left was already getting fairly large and the right one was headed that way.

Yet, even with a sonogram, 2 doctors, and one PA all doing an exam, none of them found them whatsoever. Yet, I was persistent, that I would NOT take "no" for an answer. I had at least ONE hernia, and I planned on getting someone to freaking listen!

Well the week after seeing the surgeon, I went in and had a double hernia repair.


So, went it with my elbow, my knees, both shoulders.... no matter how many scans, tests, reports, experts, and all that are involved WE, KNOW our BODIES better than anyone else. And if YOU FEEL SOMETHING IS NOT RIGHT, then do NOT TAKE NO FOR AN ANSWER! CONTINUE TO go onto other doctors until someone can give you an explanation that at the very least makes sense!!!

This day and age about "people" not being "educated" about medical problems, especially chronic ones, has far past us. The majority of this nation and around the globe, with the internet, and so many "reliable" web sites, doctors, specialists, documentation, everywhere can absolutely have a great deal of information about "possible" things that could be wrong, to others letting them know possibly how they dealt with a certain treatment, or surgery... and YES, there is also some BAD information out there too You must use you "brain and common sense" when it comes to weeding out the "good info" from the 'bad info"....

So, I totally understand doctors that get a bit annoyed with a patient that comes in and begins to tell them they know what is  wrong with them, because they read it online, they heard it on day time TV, or several of their online friends have the same issue.

I get their point. But, when I go in, I don't begin to "rattle off" what I've found online, I usually go in with a "list".... and I ask questions, about certain things I may have read online. Yet, I try not to put my foot down and say "I know what it is because I found out about all of it, here, there or yonder. But ALWAYS TAKE A LIST!!! I can guarantee even though you may have a photographic mind, and like myself I used to be able to do all kinds of things and multitask. Yet, now days, as soon as I walk into the doctors office, I've without a list I would forget have of what I went to ask about. Thus that list helps to keep YOU focused, and also let them know what kinds of things maybe going on with you, that can help them to make a better "guess-ta-ment" or find the answers to whatever is going on with you and your health.

So, now I get to the article below. Which talks ALL about the VERY thing I've been fussing and griping about!!! A very SIMPLE test, that is certainly NOT INVASIVE, and it MUCH CHEAPER than many of these other tests, that give the doctors, a much better look at what might really be going on, especially when it comes to joints, inflammation and on forth.

So, PLEASE take a moment, and read this below!!! Then PLEASE share it with your own friends and those who have been through hell and back, sometimes for YEARS trying to get a right and accurate diagnosis!

I have already got it where I can print it and take it to my own doctors!!! I think they all need a "wake up" call.

http://rawarrior.com/professionals-call-for-ultrasound-use-in-rheumatoid-arthritis/

Please send an email, snail mail, or post to their Social Media Sites about the Arthritis Caucus and how we need their support!!!

Dear Senators, Cruz, Cornyn and Congressman Barton...


I post this because Vets are also extremely critical patients in the Arthritis realm. They all too often come back with all types of arthritic problems after their tours are over. The DOD helps to do research on these issues and I wanted to also let you know this is critical to thousands and thousands of your constituents yearly. So many hours of time are lost on jobs due to these horrendous illnesses, along with people not able to support and care for their families. Medications are much too expensive and without those most of us are unable to have any type of "normal" life. I urge you to help and join and/or sponsor the Arthritis Caucus. WE need your help and support!   I would , be happy to send more information about how the devastating illnesses effect Texans along with the rest of the nation. May is National Arthritis Awareness Month! 1 in every 5 adults, 300,000 children & countless families are affected by arthritis. It accounts of $156 billion annually in lost wages and medical expenses. http://blog.arthritis.org/news/arthritis-awareness-month/

I also sent a tweet about these issues.

This is Arthritis Awareness Month! We need YOU to also ask for support from your own Congressional Leaders.

You can now tweet them, email them, snail mail them, and post to their Facebook pages. Most all of them now are also on Social Media, so that makes it much more simple to get your voice HEARD!!!

So this for ALL that suffer everyday from these horrendous diseases, that absolutely destroy our qualify of life... they have mine and I know MANY others that also feel their life is almost nothing due to these illnesses.... 

You can go to the arthritis.org site or here are some "sample" twitter posts:


THESE ARE ALL SAMPLES OF TWITTER POSTS AND/OR FACEBOOK POSTS BELOW, PLEASE ADD YOUR STORY ALSO AND PERSONALIZE THEM....

• ~300,000 babies, kids & teens have #arthritis or a rheumatic condition? http://blog.arthritis.org/news/arthritis-awareness-month/ #ArthritisAwarenessMonth
  
  
• .@insertrepnamehere in honor of #ArthritisAwarenessMonth, please support the #arthritis community by joining the Arthritis Caucus! 
  
  
  or you can go to their Facebook pages:
  
  
  
  • May is National Arthritis Awareness Month! 1 in every 5 adults, 300,000 children & countless families are affected by arthritis. It accounts of $156 billion annually in lost wages and medical expenses. http://blog.arthritis.org/news/arthritis-awareness-month/ 
    
    TO LEARN MORE GO TO:
    
    http://blog.arthritis.org/news/arthritis-awareness-month/
    
  • 
    THERE ARE ALL KINDS OF WAYS YOU CAN HELP, BY BLOGGING, TO ALL TYPES OF SOCIAL MEDIA AND USING IT TO SPREAD THE WORD!