An Article in "Mad in America" Stopping the WAR on Chronic Pain Patients

Stop The War On Chronic Pain Patients

Here is the 1st paragraph of the article....  "

Readers of Mad in America are deeply familiar with the tangles of public policy which surround voluntary or compelled interventions with psycho-active drugs in people who are experiencing life crisis. Some readers will also be familiar with a different kind of crisis and its policy tangles, in the difficulty which many people encounter getting medical assistance for chronic intractable pain."

https://www.madinamerica.com/2016/05/stop-the-war-on-chronic-pain-patients/

Hoping a better 2018! Lupus flare, RA flare, Flu virus, Chronic Pain severity, epidemic, wishing for a better year than since 2014 wanting to get back to writing, blogging and advocacy work

Putting "hopefully" my writing, posting, advocacy and writing areas of my life back in the forefront. The past two years, really more like since late 2014, seem to have been a nightmare. 

I've had good things happen, but losing two of my fur-babies, my Mom getting ill so quickly and passing away in 6 months, losing my Mom's "baby" sister, losing my marriage and not sure why yet, having a pain pump replaced, having a fractured hip and spending Christmas 2016 in the hospital and inpatient rehab, the a very complicated neck surgery in April 2017 that took me months to just get out of a hard collar with, and now my Lupus and RA are really giving me heck... much more but those are a few of the "highlights" that really put my several years previously in a spot where I felt I would NEVER be able to get back to my advocacy, activism, writing, blogging, posting... and the things I want and love to do... And I am still going through stuff health wise, my neck is really hurting again, and has been, but my shoulder as I say below, that has already had a complicated replacement began acting up, right after the last neck surgery. We have changed RA medications trying to get the RA flares under control, and my lower back and legs really beginning to bother me again...

I am not sure if the ridiculous weather we are having is a huge factor, but generally the WEATHER has always had a huge impact on me, when it comes to chronic pain, and migraines.... way before I could ever get a physician to "agree" with me, I KNEW the weather effected my severe migraines when they were so bad for over 20 years of my early life. 

Now all doctors and health professionals agree that the weather, temperature, humidity, erratic weather, cold one day, hot the next, all of those things and the barametric pressure have sometimes severe effects on many illnesses, especially chronic pain...

I ASK that each of you the "follow me" here, on my daily newspaper, through Facebook, Twitter or wherever to keep me in your thoughts and prayers as the year progresses. I REALLY want to get back to those things such as my writing and blogging... more on the advocacy side, but even sitting here at the computer puts me in such pain at times, there are days it hurts to sit, stand, walk, lie, no matter what I do, it is severe on some days, and here lately MORE days than not....

BELOW is a POST from my Facebook page, where I had been commenting to a friend of mine who is going though some frightening issues with her liver, and her Diabetes. So, as I posted this, I wanted to "add" it here also... my numbers honestly here on my blog have fallen so much, and I know the holidays effects that, but also me not able to post as much, put up as much relevant information as I usually do... I desperately need to update the look and feel... I know it's getting outdated, and it is a matter of having the time to do those things, and those are what I really want to be able to work on....

I APPRECIATE those like yourself, that give back the feeling that "I matter"... I try my best to let others know I do appreciate each one of you that take time to even give a "thumbs up" I realize not all of us have time, or feel like Posting, but I always know someone "cares" by just a heart, a thumbs up, or a "face".... you too I realize have been through so much. I have to "say something" about a "comment" I read the other day. Some one made a comment that Facebook is NOT THE PLACE to "post your personal problems"????? WHY would we "want to connect here at all" if we were not looking for others either like ourselves that "need that extra push up" every once in a while, or to "see" we are NOT alone in this come and when I "post" personal issues, which health is very personal I think, 

I am NOT looking for an answer or someone to totally agree with me, or what, it is MY way, like my blogging and writing (partially)... the social media is a way to connect for many reasons, but since I have "no really close family or friends physically that I can "see" ) my son and daughter are about the only "close family" I have left, and my daughter is 8 hours away and we talk probably at least 3 or 4 times a week, but she cannot just "drop her kids, family and husband" to run 8 hours up here, and although my son lives close by, he has his own things also, he has been fighting with "FM" now for a long while, so he is trying to re-educate himself, by some short classes, where he can do certain jobs, that the ones he used to do, due to the FM he no longer can do, lots of very hard physical labor... even though he is 37, age as many of us know with some of these horrid illnesses, syndromes, chronic pain issues and so forth, AGE has nothing to do with it.... so he sends me messages, and if I NEED him, he could be with me quickly, and we keep up with each other, 

BUT he also knows ME, I really 'don't want" the feeling that I have to have someone doing everything for me. I LIKE doing all that I CAN DO myself... and it is hard for me to even ask for help, because all the years I did everything, from hanging ceiling fans, to painting, any kind of home improvement just about, the lawn, and so many things I've loved to do, I KNOW that even since my cervical neck surgery last April, I have "overdone" some stuff. I PRAY my neck is not messed up again, or my right shoulder, that ever since the neck surgery, it is the RIGHT ONE that has already been totally replaced by a "reverse total shoulder replacement" about 6 years ago, I think, but it has given me hell ever since the last neck surgery... of course I realize 'some things" I had been doing I've had to "stop" and either let my son do it, or my neighbors help some, or I just let it go, knowing it can wait, other than an emergency thing at the house, some things that I just could NOT stand to "let go" I've had to and I am STILL learning to "let them go"... but being alone with the pups now, I do as many things as I feel like, or that I can do, if possible.... yet trying to learn to say "no" I can't, or sit down and say I just hurt too badly today, etc... those are very hard things for many of us to do... not in our "genetic makeup" :)

FINALLY WHAT IV'E BEEN SAYING FROM THE NATIONAL PAIN REPORT - "UNTREATED' CHRONIC DAILY PAIN, CAN LEAD TO DEATH"

I've been saying this for years!!!! Chronic Pain left untreated can result in DEATH!!! For all kinds of reasons. Like the author said many of us have "comorbidity’s" like heart problems, and myself several autoimmune illnesses that put me at a higher risk for "early death". But, you take away what helps me NOT have to deal with severe pain, and my body would probably "shut down"... NOT from NOT TAKING THE MEDICATIONS! BUT. from the HORRIBLE STRESS TO THE BODY OF CHRONIC PAIN DAILY! I posted this article on my Facebook, on Twitter, I am going to post it on my blog, and everywhere I can. I've been trying to get the word out that THEY ONLY TELL ONE SIDE OF THE STORY ON THE NEWS AND SUCH! YOU never HEAR ABOUT US, THOSE THAT WOULD POSSIBLY PASS AWAY FROM STRESSES OF SEVERE CHRONIC PAIN.

Here is the article and PLEASE PASS THIS ALONG!

http://nationalpainreport.com/untreated-chronic-pain-can-kill-8833859.html#comment-208843

CONTINUED FROM "Delving Into "hopefully" a New Outlook on Rheumatic Illnesses & finding Ways to get the word out to Others... Possibly a New BOOK, A new "Non-Profit" to be active with, and a "new attitude" for myself "Relationships" Chronic Illnesses, and Life

It's a mixed emotional painful weekend last few days for me... my entire BODY hurts so badly, and I am not sure what the hell is going on. Even MANY of the "joints" that have been completely replaced hurt so badly, I a not sure what to make out of it.


I continue to blame much of the severe pain that sometimes occurs on the humid, wet TX weather. Not the "heat" so much, as it is the basically HIGH HUMIDITY we have most of the time, whether hot or cold here.

You would think I lived much closer to the coast the way the humidity is so high here. Yet, I live at least 6 hours from the coast, if I went directly to Houston from where I am.

So, "the region" is not to blame for sure. We just happen to have a great deal of very "wet, damp" even some mornings the lawn will appear as if it has rained the night before because everything is so "wet and the moisture just "hangs" almost in the air.

Yet, I have to believe that there is more to what I am feeling than humidity. It's gotten me hurting so badly, that it matters not what I do or don't do, the pain is almost unbearable. In fact it can be down right frightening.

When you are already "autoimmune compromised" with RA, Lupus and so forth, you are on medications that are "risky" to say the least for severe infections, and sometimes even cancer that could develop although the risks are very low, I fear "infected" joint replacements, or something that has gone "wrong" with the implants... Yet it's not just those joints, it is all of my other joints, muscles, my lower back, headaches, every inch of my body seems to just ache deeply down almost as if my "bones" were in pain.

I've researched the subject many times, because this has happened to me over the past at least 10 years off and on, with really no way to find a good explanation or a diagnosis to put your finger on and say OKAY, "this is what's wrong"....

As I've told my pain specialist before I could literally...

Alas MONDAY MORNING ARRIVES, AND GUESS WHAT??? HIGH HUMIDITY, STORMY WEATHER, AND A "THICKNESS" IN THE AIR that feels like you could "push it up and sit down on it"....

So, no one can say "weather" does NOT effect many of us very dramatically especially when joints, bones, muscles, and chronic pain and chronic conditions are present....

Dealing with Daily "Issues" that for those who are NOT ILL, can deal with them fine! Take someone with RA, Lupus, Joint Issues and they are Major problems! Here is my Story!

I would have to write a BOOK to tell all I've been through this past few days. First of all, my pup, Bub's who is highly allergic to any type of "bite"... was clawing and scratching himself yet I could NOT find one flea, have not seen a flea, and had been driving myself crazy. He has always had skin issues, especially being hyper-sensetive and itching... and he was whining, crawling up in my lap, and even when I asked him"Bub's are you itchy?" - he would head for the kitchen so I would give him a Benadryl. Anyway, I FINALLY got him where I could really take a good look on Friday, and found a bit of "flea dirt' (which honestly I had not known about) on his bottom...where I knew any flea loves to hide... yet still NO flea's! 

So, I sprayed him, sprayed the other one down Peanut, then salted and and put the washing type of Borax own my rugs, and let that sit. That was after spraying the outside of the house, getting more granules and broadcasting them in the back, front and everywhere I could outside. I sprayed down everything in the house with "Flea Enforcer" which a few years ago, worked like a charm, and you can spray it on even your bed, pillows, sofa etc.... so, I got some of that done, had to leave the salt and Borax to sit for awhile, and went to run errands. I was SUPPOSED TO LEAVE YESTERDAY FOR THE CASINO! 

So, I as "trying" to get ready for that. I had a million things to do, in the yard, in the house, running errands (this was Saturday) and my "light" to tell me my tires were "under inflated" came on. It does that when the weather changes from hot to cooler, but I checked them and they needed air. But, it was already late in the afternoon, I was exhausted, needed to get home to vacuum up that stuff, pack my clothes, so I decided to wait and I would air up the tires Sunday afternoon. So, I get up Sunday, preparing my meds, my clothes, deciding what to wear, and also when to leave to try and "avoid" some of the rush hour traffic Monday morning in Dallas, headed to Winstar. So, I go and get me some quarters (now it is like 1.00 OR MORE for air) and I went to air them where I always do... downtown, at the station across the street fro the automated car wash. Theirs is on the side, and not a lot of traffic etc... so I can park where I can be as up close as I can be... So I get all of them stem covers off, get my quarters ready, and get the line ready to pull, and it comes on, and I TRIED AND TRIED AND TRIED, but my arms and especially HANDS are so stiff, swollen, and I guess weak from the RA and all the trouble I've been having -

 I TRIED THREE TIMES (3.00) and I STILL DID NOT GET THOSE TIRES AIRED UP! By then I was upset, hurting worse than ever, pissed, off (AND THIS GUY CIRCLED THE STATION 4 TIMES, WATCHING ME, YET NEVER OFFERED ANY HELP! THE FREAKING JERK!) Well, It is Sunday, I have no clue where to go to have anyone put air in the tires, and hell now you cannot get anyone to do it, even when I had my oil changed, I was pissed because i ASKED HIM TO AIR THEM UP, MY LIGHT WAS ON BACK THEN) I GET IN THE Car and the LIGHT IS ON, HE NEVER put the right amount of air in them, they take 35PSI IN THE FRONT AND 233 PSI IN THE BACK! I know I've done it myself and hell been doing my own tire airing up for YEARS AND YEARS! Yet, I just could not pull that damned line, hold it up to the stem tightly enough, and the push the nozzle to let the air in.... my hands, wrists, even neck and shoulders just could not let me! SO, I GO HOME IN TEARS, JUST SOBBING.... mad, and so upset, because I would NOT drive the car to Winstar without the tires aired up correctly. I wanted to leave EARLY Monday morning about 6AM or so, so I was NOT going to find anyone to help me and besides by then I did not want to hassle with the entire ordeal. SO, I wound up COMING HOME, CALLING AND CANCELING MY RESERVATION AGAIN!

 I GOT HOME DID THE vacuuming, this was already 5PM or after by the time I finished all of that, and made me and the pups some dinner, and watched a movie. So, that meant NO TRIP again... I've NOT BEEN OUT OF ENNIS SINCE BEFORE MY MOM GOT SICK IN JANUARY! I've not had ONE break, all I have done, is do paperwork (which is still not finished) paint, clean, cut down tree limbs, spend BUCKS to get rid of bees, get stung by those damned wasps, and do any and everything else, but I STILL HAVE NOT HAD EVEN ONE DAMNED AFTERNOON OF A BREAK! MY NECK IS BAD! I need surgery and now, after hurting my lower back again the time Mom got home from the hospital my lower back is always killing me... 

YES, I GO AHEAD AND CUT TREE LIMBS, AND DO EVERYTHING ELSE, HURTING OR NOT, BECAUSE HOW THE HELL DOES IT GET DONE, IF I DON'T DO IT???? If I allowed myself, I would sit on that sofa, and let myself "wallow" in all of the pain, the upset feelings, the hurt, the guilt, and the MAD PLACE THAT I AM over what I TOLD MY MOM SHE WOULD CAUSE, BEFORE SHE PASSED AWAY! NOW she is GONE, AND GUESS WHAT??? Exactly WHAT I TRIED TO WARN HER ABOUT IS HAPPENING! IT IS DAMNED IF I DO, AND DAMNED IF I DON'T.... I am too tired, hurting too badly, and need a freaking moment that I do not have to DEAL WITH CRAP! So, that is why I've not been "online".... I've not felt like it and not only that I HAVE NOT HAD EVEN A MOMENT TO BREATHE... I HAD TO GO, BUY A 12 VOLT Portable Air "compressor".... it runs off of your car, and I bought that yesterday when I found it in Wal-Mart. 

Although I still had to mess with it, and dammit, I know better, I've got to go and buy some stem covers, I always wind up dropping them... BUT I GOT MY TIRES AIRED UP CORRECTLY YESTERDAY AFTERNOON AND THE LIGHT IS NOW OFF! Plus NO MORE do I have to worry about pulling on a damned air hose, I can air my tires up anywhere.... It is small and fits right into my hatchback, with my car cleaning stuff... so PROBLEM SOLVED FINALLY!

Tough Moments.... for me illness, I think Imay have had the West Nile Virus - and get some "grief" seems to be seeping in...

I realize I've not been here and I am so sorry I've not been keeping the blog fresh with new posts as of late. But,  spent a week (started last Sunday early morning) so ill, that I was not sure what was wrong with me. Yet, even though I thought several times of going to the Urgent Care, due to the tremendous amount of antibiotics and corticosteroids my body had endured over the past almost a year, I wanted to try and allow what bit of immune system I have left to try and fight it.... it is taking 6 or more days to begin to feel somewhat better, but from severe headache that lasted for almost 4 days, stiff neck, fever, severe pain in every muscle and joint, feeling like my joints were trying to "lock down at times", severe fatigue worse than I have endured in a long time, not have any strength to even go out to the store, or barely walk across my little home.... my head felt as if "sand" was in it, and when I moved it would sound as if it was "sifting" through my head, very swollen lymph glands in my neck, sore throat a bit, and pain in my rib cage in the back, all symptoms of many things.... but I read last night we have had a HIGH RATE of "positive West Nile Mosquito's" found just in the past couple of weeks...some seemingly close to my home, but they found them in 19 different areas of town, so one bite from anywhere around town by one could have kicked it off...


I cannot "be sure" that is what it was, BUT after reading that, then the symptoms, and knowing that my immune system is so "not there" I feel like that probably what was making me so ill this past 6 plus days... I am "better" today, but my energy is slim to none, and "mentally" I am "not wanting" to do anything... which is NOT like me...

So, I am not sure if some of the "grief" of losing my Mom in June is beginning to truly "hit" me... or if it is a mixture of several things, including being ill...


BUT, hang in here with me... I am HERE AND WILL SOON BE BACK POSTING INTERESTING articles, facts, and blogging away again....


Have a good weekend,  Rhia


Here are some articles and Symptoms of West Nile Virus:

http://www.activebeat.co/your-health/10-signs-you-may-have-west-nile-virus/?utm_medium=cpc&utm_source=google&utm_campaign=AB_GGL_US_DESK&cus_widget=&utm_content=search_fixed&utm_term=west%20nile%20virus

https://medlineplus.gov/westnilevirus.html

THIS ARTICLE IS ABOUT THE FINDINGS IN ENNIS OF THE WEST NILE POSITIVE MOSQUITO'S

http://www.ennisdailynews.com/news/archive-1019/

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!!!!!

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

Round Two of Bad Weather (I can tell from my severe pain), Lupus, RA, Flares, MORE unbearable pain, Discographs, Ankylosing Spondylitis & More

Looks like Round 2 of the BAD Weather days for my area around the DFW Metroplex, including Ellis County. It is supposed to start out as rain possibly today, but then turn back into Thunderstorms for several days through the weekend and more... so we shall see. I am supposed to go for that discograph on Monday, But, due to having this corticosteroid injection and having both I think a Lupus and RA flare at the same time, and now I am on a step down large dose of Prednisone for about 7 days or so. I am not sure they will even consider doing the procedure. Since they have to inject dye into my spine, and we run the risk of infection even with antibiotics they will give me IV during the procedure, my immune system is not probably really ready to handle it. I am calling them today and talking to them about it before I even try to go up to Dallas early Monday morning. No use in my son nor I making that trip only to have them tell me I can't have it done right now. Also I did find out my PCP will do all of the blood work my Rheumy wants me to have. I'll go in next week and have it and what my PCP wants done all at the same time. I am sure the lab tech will be thrilled! He cringes when he sees me coming. I am such a horrible stick, due to rolling veins, tiny veins, the "blow" on them, they have to "chase them down, anyway... he just looks like he wants to cry as I walk in the door. But, it all has to be done, thus he will have to stick as much as it takes to get the blood needed for the tests. They are also checking for that "marker" for AS (ankylosing spondylitis) HLA-B27... a "genetic marker" that sometimes shows with this autoimmune disorder. From what I read, lots of people can have the "marker" yet never get the AI. Then many can have AS, yet the marker does not show. Yet, my latest symptoms, with the very severe lower lumbar and sacral L-5/S-1 back pain, down into my hips, that almost keeps me from being able to sit at my computer for very long at a time... I just have all of the hallmark symptoms of the disease. Now it may show I have a compression fracture due to the osteoporosis, the reason for this discograph... I don't care what it is, fix it so I can go back to somewhat of whatever "normal" in my life is anymore. Now, that I am basically here with me and the pups, I have LOTS of stuff I want to do at the house.... but in the pain I've been in, I just am almost in tears by the time I sit here for 10 minutes... So, I do need the discograph done, but even my pain doctor, thinks it is a waste of time and money.. it appears I have something that needs to be fixed in that area, so even if we find the AS is present, then I still will probably be having lower surgery on those places on my very lower spine... My hips hurt so badly, even this morning by 3 am I was awake from pain so severe I wanted to scream.... so let's hope they find something and can do something about it....

As you can see again I'm going through hell with the AI issues. Some days just trying to ignore the pain, the inflammation, stiffness, and go ahead with all of my house projects work... and then others the Rheumatoid Arthritis, the Lupus, and now possibly Ankylosing Spondylitis, and more just about get the best of me. I am attaching a couple of links about AS, for those who want to know more, as well as about the discograph... and so forth. 

I need to try and get to work on my 3rd book on my own history and river of "fun" with Autoimmune Illnesses, and I intend to soon, if I can get to where I can sit long enough to do so. I have almost finished reading Stephen King's book "On Writing". He has some incredible ideas, and of course many I already know. I need a complete "block of time" even if that means weeks, to just write! Nothing else, if I can help it, but quiet time, where I can "bust out" the rest of the writing, then I can begin editing, proofing and so forth. I have no change but to do it all myself. I cannot afford to have a professional help with it, and I did a pretty darn good job with my 1st two books.

This 3rd on of course is so much different. It will be a compilation of my blog posts, my writing about these AI illnesses, and all of the other complications that go along with them... and my personal story, both glory and Lord awful times when I thought not being on this Earth would be better than all I've endured over this past many years... especially since 2005 forward. 

I know I need to get it out there for others to read, and hopefully show that they too can share their problems... people out there do care, even when you think they don't. 

So, as the days go by, keep me in your thoughts... lots of stuff going on with me right now. Some I cannot speak about much until later when things are more settled. 

As time goes on, I will be able to give more details about my life, and what is, is not, and what will go on, for my future. Of course, as I've found out through personal experience, as well as through the experiences of some of my friends especially on Facebook, we are never "guaranteed", what the future will hold. I was thinking about that just a bit ago while I was in the kitchen. In 2010, on Feb. 2nd, which would have been my Dad's birthday, I went to the ER via ambulance, sicker than I can remember... they thought it was my Gallbladder. Well, it came out, and I appeared to be getting better. Yet, within 10 hours or so, I was so ill, they feared I may not pull through. They rushed me via ambulance to Methodist in Dallas, where I stayed 6 weeks. They told us I had a "collapsed" bile duct, that my liver had a nick on it, from the surgery and it was pouring "poison" into my abdomen. I had tubes of stuff coming out of me for weeks and weeks. I didn't even get them out until much later after I came home. Honestly, I don't think they really ever knew what was wrong exactly. I was told by all of my physicians, including my PCP, they thought I would frankly, die... although I am still here, but it was a scary, very long 4 months or even more before I felt like I truly may live. I could not eat nor drink for something like 6 weeks. They fed me via IV the entire time... so we never know... a guy I know that was the "picture of health" in his mid 40's, was found by his wife on the floor when she got home from errands. He had a massive brain bleed. Turned out after having to remove a part of his skull to relieve the pressure, he had had a stroke... and maybe unable to move on his entire right side the rest of his life.

I just read where a friend on Facebook who has "RSD", and I don't know a lot about it, although I do know some... she is very young, and facing having her arm amputated today! It appears where blood may not get to certain areas due to nerve issues, thus it appears like she has the massive sores like an infection on her lower arm. So, they are taking her arm off partially it appears down below the elbow.

Another friend here I went to school with is battling cancer. She had it when we were still in high school! And she kicked its butt. Now, after over 30 plus years, it is back, and she is fighting daily with pain, from a tumor that is pressing on her sciatic nerve. 

That is just a few I can think of... My Dad basically went like of like that... had a knee replacement, and something just went terribly wrong... and he passed away in the hospital.... so we never know, from moment to moment what may happen...


The accident Jim had last year March 2014, who would have known an 18 wheel tractor trailer would have ran him over and now he is partially paralized from about his mid-chest down. 

Those again are just a few that I can think of now, and there are so many more of us that either have suffered like that, or know of dear family or friends, that within a breaths space... have gone through horrid and almost unbelievable health experiences. 


RSD - http://rsds.org/



Ankylosing Spondylitis -   (AS)
http://www.spondylitis.org/about/as.aspx




 

When the Physicians Allow You to Hurt Like Hell - and play this "hurry up and wait" Ordeal - Intractable Pain....

I did not finish this BEFORE leaving the page yesterday, so everything I wrote after this initial post was lost. I had asked if anyone had one of these "discograms".... and if so was it as bad as what I am reading? It just seems like this is not a test to take lightly. Plus you may end up in worse pain than you already are. I went to my Orthopedic surgeon this week. He was the one that actually put my new right shoulder in and then done my 4 level neck surgery about two years ago. As awesome of a SURGEON AND DOCTOR as he is, he "patient repoire" SUCKS!! He "hates" an educated patient. I had written before that him and I have gotten into it, before he did my neck surgery. I had given him my own thoughts after doing a great deal of research, even on the "reverse shoulder replacement" and he just didn't appreciate "me" a layman, even attempting to let him know my thoughts on the situation. He basically told me I was "stupid".... and later on, after the surgeries were done and MOST OF WHAT I SAID, was TRUE about my situation, he had in his own weird way had to 'APOLOGIZE" for making it sound like I was stupid. I never got a total I am sorry, or apology, but in his own way, he kind of smoothed everything over. Anyway now I've found more information on "sacroiliitis.... that sounds also more like what is going on with me and my very lower back, almost at my tailbone, and then into both hips and traveling at times down to my knees.... I just did some research on it, after a doctor in CA had "tweeted" me about what I posted about my lower back and hip pain... I found out this issue often is looked over, and the doctors "miss" that this is the issue, and blame it on a lumbar spine thing instead. Well, as I've told both doctors now, I feel I have two issues.... maybe my very lowest lumbar vertebra and my S-1 -S-2 have issues.... BUT there is something going on with my hips themselves, or another issue causing the severe hip pain. He had the audacity to tell me that the severe pain I was having in my hips, no way could be caused by bursitis... or the like... which is bull... I KNOW I've had hip bursitis several times and it hurts like hell!!! Now here I sit, in fact I just tried the very "test" this doctor said to try in order to see if this is possibly this sacroiliitis or not. And both sides put me almost in a scream to try and "test" to see if that is the cause. So, now here I am NOT gotten any relief and in fact, I am WORSE TODAY!!! And I don't see my pain doctor until next Thursday. I am in tears with severe pain. It matters not if I sit, stand, walk... right now the sitting is the worst. But, if I go out and walk a bit, then it also hits me like a razor sharp ball of fire into my very low buttocks, and hips, then down the sides of both legs.... I cannot take much more of this crap.... I am almost to the place of intractable pain again..... Why is it, no matter how badly we hurt, it is always this "hurry up and wait" game with physicians????
I've done enough research through out all of my chronic illness and pain issues now for so many years, I could almost be a doctor myself... or a pretty good researcher....

Yet, this is beginning to be the end of how much I can take. I realize ANY of us are in all types of pain. Often we are in such an overload of it, we would do just about any and everything to stop it.

What do you do? We know that going to an ER with "chronic pain' is just about like peeing out of the back of a moving truck bed. We know that most of our physicians, want to do a billion dollars worth of tests, scans, injections, treatments, and all or none may work or not work. I have said over and over again, that no matter where they have ever done "CT Scans", or MRi's, EMG's, EEG's.... all types of nerve tests... blood work. and yes there is some thing that show up. Yet, only when a surgeon FINALLY GOES IN - that is when they see JUST HOW BADLY MY JOINTS ARE SCREWED UP!

I've been told that by several of my physicians over the years. So, again, I will repeat, since it is worth repeating, TESTS DO NOT ALWAYS mean they are TRUE AND CORRECT! Tests are usually as good as the person doing them, and then whomever does the reading of them...

A very good example just happened to me this week. I had a CT can about 4 weeks ago, on my lumbar spine. It did show some problems in my lumbar spine, and although not just HUGE issues, my pain doctor said it could be enough to cause the pain I am having.

I go to my Orthopedic Surgeon this week. He was "supposed" to have a copy of the CT Scan. Somehow, between me going into that building, and seeing him in his office, my CT Scan results suddenly disappeared. I KNOW it was there with the paperwork I brought in. I saw it, and I said it twice or three times... his office somewhere lost it, put it in another chart or something. BUT, He did DO regular X-Rays on my lower lumbar spine and hips. He could tell me MORE by regular X-rays about my lumbar spine, and so forth THAN THE CT SCAN EVEN WAS SHOWING... and He had NOT even seen the scan. So, that just goes to show, with a simple couple of X-rays, a physician that KNOWS what he is looking for, can sometimes find something before ordering other very expensive, more invasive tests! I thought he had been reading the CT Scan. Then he mentioned about possibly having one done. I said well I just had one 4 weeks ago and I brought it in with the rest of that paperwork. Of course NO he had not seen it, but it did see the problems. He began to tell me that due to the extreme amount of pain I was in, there was no way that my hips could cause the pain. I say BULL! When I was this bad before, my hips were injected into the bursa with corticosteroid and it worked, two times at least. 

Anyway, it went on to prove to me, in all honesty, when a proper physician sees some tests such as this plain X-Ray.... they can go by that and what the patient says, rather than order $1,000.00's of dollars worth of tests, that if not read correctly would not show how bad it really was.

So, I have tried just about any and everything to "keep my mind" off the pain... between baking, writing, doing emails, reading and so on... nothing is helping. Here it is Friday afternoon, and I have another week to put up with this mess.....

Could I scream????!!!!! YOU BET I COULD!!!!!!!!!