Showing posts with label chronic pain. Show all posts
Showing posts with label chronic pain. Show all posts

Thursday, July 12, 2018

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.                                                                                                                                                   

Saturday, June 9, 2018

Keith Urban Lyrics, and trying to hold myself together after... 2 years today since Mom passed away, and the loneliness of the loss of her, Dad, Tazzy, Bub's and my love..



Yes, today and yesterday have been difficult for me. Yesterday, things, several things really hit me, right in the gut, literally. By the time I got home from Wally World, I was physically sick to my stomach, and felt horrid all day long. It was so bad, I never ate anything for dinner at all. I fed the pups, and they "knew" "Mommie" was not feeling well. 

They cuddled up with me on the sofa, and would not leave my side. of course today is the 2 year anniversary of my Mom passing away. In my mind, I've played over and over what our doctor we saw, usually had our appts on the same day, used to tell her. He would say that she was going to "outlive" him and I... not that he meant that "badly"... because of course with my health issues, he knew that it was a true statement, but he wanted my Mom to pull herself out of where she would "think she was too old for this, that or the other, so it was his way of telling her at the time "health wise" Mom was much more "healthy" than many of us. Yet, although she was, never did he even believe how quickly she went downhill when the Lewy Body Dementia hit.


 I had seen signs for a while, before she really got so bad. Here and there, being forgetful, losing things, not recalling events, yet of course at 80 years old, heck at 40, 50 and 60 years old many of us are "forgetful"... I blame the "world" we live in for the stress and strain, the toll our minds and bodies take these past 25 years or so... things used to be so much simpler, it seemed the "burdens" we have now, were not as they were back then. 


From the selfish ways many of us have abused our water, land and air, to technology that in ways is wonderful, yet in ways, it has caused families to not spend "time" together... kids and parents on their phones, the computers, playing games, you name it, we tend to "have something else more, better, important, than a family meal together, or a quiet night without a TV, phone, or computer. I realize that NOT everyone has given up what family time is, and it seems that some have tended to "go back" to that time... when everyone was at the dinner table, no TV, no phones, just dinner, and asking one another how their days were. I had those all my younger life... and until my kids were well into being teenagers, for the most part we also spent nights together, around the dinner table, talking to each other, and caring. I know that has carried on to my daughter and her family. Of course we are "busy" but for the most part, her children, husband and her spend their dinner time together, sharing in one another's lives. There is so much that I think about when i think of my Mom... 


Mom never "gave me crap" about tattoo's, belly rings, tongue rings... she may have not agreed, but, she knew that I had my own personal reasons for all of it, and she was never one to put me down for making those choices. Mom spoke her mind though... anyone that knew her, knew that what came out of her mouth, was her personal thoughts, and she expressed them. Not that it was always "in a proper place" or said in a "proper way" but it was Mom, and you had to accept that part of her. So often, she was overly concerned about my health and me. Sometimes to the point I think she worried herself way too much. 


But, she knew the pain and suffering I endured, mentally, physically and emotionally, and many times she told me, she could never "brave" what I went through daily. Yet, I always told her, that she need not worry, I am a survivor, and what is, what happens, why it happens, I don't know but I do know it serves a purpose. She was so proud of me... when I went to college and worked full time, and took care of my home and family, she was my greatest fan! She urged me to oil paint, and especially all of my poetry and writing. When I published my first two books, she cried tears of joy, for she always knew I had something very special, that gave me the words to write, and how much I touched the hearts of those around me. She was always the one to encourage me, whatever it was, she knew I could do it. LOL, so often she told me I should have went to medical school. I would have been such an asset to many as a doctor, or in research. 


When I got to go to Washington DC with the Arthritis Foundation, that was a moment that she also cherished with me. My walls around my desk are covered in the awards, the recognition, the paper clippings when I had an article in our local paper. The Proclamations for Lupus, for RA, signed by our Mayor and some signed by our Governor. Mom was my best friend, after I was alone, she became the one that stood with me, that talked to me, that helped me carry on, even though I was in such a mess after being separated. She understood, because after Dad passed away, Mom was very frightened of what might happen. Coming back to TX was a ver difficult thing for me, I never wanted to leave Seattle, but she needed me, so I came back here to help her. I miss her every day, and even though Dad passed away n 2005, I still miss him. 



Often thinking to myself, that we would be fishing today if he were here. Or I would be visiting, or we may be going to the casino tomorrow if she were here.... all of the things and many many more that I so miss... from the little things to the small things, after the loss of my parents, losing my Pug Tazzy, and then losing Bub's after I broke my hip.... losses that cut right to my core, and then Jim no longer here... my world on some days seems so upside down..... So, Mom, I hope you know how much I miss you and Dad, and there are days it is s struggle... but I put ne foot in front of the other and try to----- carry on



Friday, May 18, 2018

Terrible and Frightening News from the Pain News Network for Chronic Pain Patients and those following Major Surgeries and More!





Pain sufferers and patient advocates are overwhelming opposed to plans by the U.S. Drug Enforcement Administration to further restrict the supply of opioid medication to punish drug makers that allow too many of their painkillers to be diverted and abused. ... news story follows down at link:...






https://www.painnewsnetwork.org/stories/2018/5/9/critics-say-dea-plan-could-worsen-opioid-shortages

Wednesday, February 7, 2018

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/

Wednesday, January 10, 2018

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" 

Tuesday, January 2, 2018

"2018!" HOPE for better health, less pain, yet it's not beginning very well, Lupus, RA flares possible & weather is literally I believe reeking havoc with me!

Praying for RELIEF, from Lupus, RA, Chronic Pain, and trying to remain hopeful that being in pain does NOT keep me from doing the things I want to do for 2018



The weather here like many places has been down right bitter cold! We were in the teens' night before and last night, at 17 this morning when I first got up. Fortunately, so far there has been no falling precipitation, or it may have been really bad here. I know I've heard the ambulances etc going out off and on now for days, I am sure many people ill, or get too cold etc. I am having a very difficult time "coping" with everything. I've so wanted 2018 to begin with new things to do, to accomplish, and pray that pain and illness don't plague me. Yet, I've been suffering with a severe headache off and on now for really 2 weeks, and when the weather got so cold, I believe every bone in my body hurts. I "may have a Lupus and/or RA" flare.

I feel like after they took me off the Methotrexate, that keeps the other medications from working as well. We did it due to me having infections so much back a good while ago, and now that seems to be somewhat "better" BUT the pain has been so horrible, almost unbearable, and for me to say that, and I am talking about over and above all of my medications, the pain pump and so forth. I FEAR going to the doctor's, one fear is that my neck could be messed up again. If I were to go to Urgent Care they could give me an injection of a corticosteroid along with a 14 day supply of a huge dose of prednisone, and if it is the Lupus and/or RA, then that would definitely help the pain, stiffness and inflammation.

Then I've had hell with my left elbow for a long while. In fact the Orthopedic Surgeon who did my knee replacements etc, told me several years ago that my left elbow really needed another surgery on it. Well, he injected it and it went a long while without giving me hell. But in the summer when I was doing all of the windows, getting them open (the old windows that someone painted shut inside) so I could open windows when the days were nice, plus I can clean them better, and be able to paint them etc... and it took a couple of weeks, but I got all but about 3 in the house that so far I've not been able to get open. One of them has a crack in it, so I didn't want to be messing with it, I JUST put in the one glass pane that the hail broke out, 2 or 3 years ago!

But, I have a couple more than NOW since I know I can actually do them myself, when the weather warms up I want to replace any that are cracked. Many of them have the initial glass that was put in them in 1950 when the house was built, so the glass is very brittle, after so many years... anyway, I had surgery on the left elbow in about 1998 or so. In fact, Dr. Roye who had just began practicing in Waxahachie, did the surgery. He fixed the elbow and had also done work on my left shoulder. But, the elbow has kind of like pins or screws in it, and they have always "poked" out so you can see them.

But, they had been right "above" the upper part of my elbow, and I accidentally was working on one of those windows and it was very loose, rather than so tight as most of them. I knew I had to prop it open in order to do what I needed to do, so it would not come crashing down on my fingers... I had placed a piece of board under it, but I was trying to get a screen in where that storm window had been used for an A/C unit. When it went out and I got the new one I moved it out of that window and wanted to put the screen back in it... but it is harder to do than you think, the way that screen has to go high up, then slide down into that window is difficult when you are having to go under the old inside window. Well, I started to put the screen in and try to get it up high enough to go into the window, but you also have to push on the outside of the storm window in order to get the screen to go in correctly. So, I knocked that darned board down and down went that heavy wooden window right down on that elbow where those screws are...

once that happened I was in so much pain, plus the screws actually MOVED down towards the bottom of my elbow than where they had been... well of course the hip fracture, then the neck surgery etc. and although the elbow pops now and then, it really has not hurt that much. Up until the past about 4 or 5 nights... it wakes me up every morning about 2AM from my elbow down to my fingers "numb" yet "on fire".... like it has fallen asleep so badly, and now as it "wakes" up that PAIN that comes with it! At first I thought it was my wrist because I have carpal tunnel, and I had the right hand fixed, but other things came up so I left the left one alone.... but I know it is not "just" my wrist down, and actually starts right above the elbow and radiates down into my thumbs and two sometimes 3 fingers on the thumb side. I believe I have Cubital tunnel syndrome which it what I think I had when it was repaired in the late 90's....

and after hitting those screws and it was already giving me problems, I feel that really did a number on it.... BUT, then for 2 nights beside HORRIBLE NIGHTMARES. I am woke up by my left LEG from my knee down with a very deep terrible ache! Bad enough it woke me up again last night. I got up took some meds and laid back down, but by 4AM I was up with the both of them hurting again.... What truly irks me about all of it, is that I've prayed and prayed to just have "time" to not be in so much pain, to not have horrible health issues, so I CAN BLOG, WRITE, AND DO SOME THINGS I WANT TO DO! IF between not sleeping due to severe pain, and then the weather really making it worse, and maybe some type of a flare, I hate to being griping but I pray the rest of 2018 is not like the 1st couple of days have been. I am almost embarrassed to "whine" about these things but damned it's just so hard to live with and not be able to talk to anyone about it....

Friday, November 24, 2017

Check out my Daily Newspaper for the latest articles on Chronic Pain, Autoimmune Illnesses, such as Lupus, RA, & joint issues, plus many more "health related" information!


This is just one article from today's addition, and I have discussed this several times over the years, even my Mom used to say before she passed away last year, she did not know people could go and withstand the types of chronic pain she saw myself and many others go through....

 

http://www.clinicalpainadvisor.com/chronic-pain/suicide-attempts-in-chronic-pain/article/697827/



Here is the Latest Addition of my Newspaper for today Friday 24th, 2017


http://news.autoimmunearthriticsystemiclife.com/#/


Life Chronic Pain Autoimmune Systemic Diseases & Dementia



Thursday, November 16, 2017

Tuesday, October 17, 2017

"National Pain Report and a New Book about FM and CFS....


 

FIBROMYALGIA and New Book You maybe interested in.....


http://nationalpainreport.com/new-book-gets-to-the-underlying-cause-of-fibromyalgia-8834612.html


Since I really LIKE what National Pain Report says, here is a new book they are talking about, and it's in regard to FM, (Fibromyalgia) which I know MANY of you have, have been diagnosed with it, or told you "may" have it or what they also referred it as, "Chronic Fatigue Syndrome"... I know MANY years back when I was trying to find answers to my "nightmare of several times a month migraines" I had several physicians tell me they thought I "may have" Fibromyalgia, or then also they referred to it as, Chronic Fatigue Syndrome... 

back then it was so NEW, they really had NO CLUE about it at all what it was, what caused it, or EVEN IF IT WAS A REAL DIAGNOSIS... I know MANY women continued to "hear" it as a diagnosis, when doctor's did not KNOW what was wrong, with WOMEN especially so it was either you have FM, CFS, or you are "stressed" or "depressed".... which aren't we ALL those things, whether we are "chronically ill" or NOT... plus being stressed or depressed it NOT just for women, but MANY men now days also... but since I realize that IMOP (which my opinion is not really a matter here) but I THINK that FM is an "autoimmune illness" just as any other like Lupus, RA, Sjogren's, JRA, and the

Monday, September 25, 2017

Crazy Weeks, Dealing with more Pain, the Hip Injections, and when you feel the "worst" that is when it all Hits you in the face, doctors, CVS,(will say I am proud of the government, insurance and more...

THE PHARMACY CVS, AND OTHER THOUGHTS ON HEALTH INSURANCE, THE GOVERNMENT ISSUES AND MORE...

I usually try to stay away from "politics" but lately POLITICS IS EFFECTING SO MANY OF US WITH CHRONIC HEALTH CONDITIONS, IT'S DIFFICULT TO NOT SPEAK ABOUT THEM!

I don't know how everyone else feels about this ordeal over "CVS" "limiting" opioid medications like they are, BUT WHAT NEXT!???

Limit out blood pressure medications, and Lord knows what??? It is a sad day when our own physicians can get "trumped" HAHA yeah I said "TRUMPED" by the darned pharmacies! I THINK it stinks, in so many ways....

After making the statement above that really did not have all that much to do with the "President" other than it came almost to be a "pun" play on words, I had I guess a "follower" of the President's "confront" me on Facebook. In the first place, I said NOTHING about him having a thing to do with CVS and their "new" tactics as far as "reducing" greatly the amount of opiates for 'acute" pain they will sell now.

Needless to say she made the comment "Well NO ONE should EVER be given OPIATES for PAIN! This is a woman that is a "friend" as far as on Facebook, BUT she never "says" a word to me, never. Yet, I guess due to me making the pun on words about "Trumped" she decided to "attack" me on my own page.

First of all, posting your opinion is fine. I don't have a problem at all with that, But, she really didn't read what I posted in the first place, and in the 2nd, I found out she has FM, and she began to "object" to everything I said about "any type" of pain control.

Yes, I was getting extremely frustrated with this person who never says a thing, to begin to say things like, (I talked about a friend of mine who uses Kratom for pain" and I had never heard of it, until lately. I would not use it, but for some it works and I think that is great. Then lately I've been hearing about some people using the "Hemp Extract Oil" or "CBD" Oil that is completely legal, you can even buy it on Amazon or many other places that sell all types of aromatherapy items and so forth.

So, I also mentioned that, along with other items that either are "not prescription" opiates, or the things that maybe prescriptions but not opiates, yet there are many people with other health conditions that may not allow them to take "NSAIDS", Antidepressants, some epilepsy medications and so on.

Thus, you can't just put everyone under the "same umbrella" and say NO ONE SHOULD BE GIVEN OPIATES! Also, MANY of those that get medications like this either "acquire" them illegally or from a different county, OR they are using other "illegal" narcotics, such as heroin, and other drugs that are not legal.

I hold high regard for Senator John McCain and in fact just sent him a message telling him how much I appreciate that he stood up for all of us, and said this "Obamacare" replacement" insurance could ultimately bring so many of us closer to the poor house that we already are, OR cause us to lose our coverage all together as far as pre-exsisting conditions.

It's more than time for the American people to take a stance against what our own officials that we place in high honored spots in our government that do NOT listen to the very people they represent. But, it needs to be in a "positive" realm, not causing and reeking havoc, or breaking things, ruining other people's property, and the likes.

I realize that not all of us have the money, or time, to make a trip to Washington DC, but we can get in contact with most of our Congressional Leaders. They have email, twitter, Facebook, websites where you can send a message, mail a letter, send a video, do something to stand up and LET them KNOW we will not stand for the thoughtless ways they treat their constituents.













Thursday, September 14, 2017

"National Pain Report" Part 1 and 2 of "State Of Pain" and how our Governmental Bodies Can have a "negative effect" if we don't stand viligant!




http://nationalpainreport.com/the-states-of-pain-regulation-8834288.html


Part 1 Above



http://nationalpainreport.com/states-of-pain-part-ii-the-influence-of-regulations-8834347.html#comment-210816

Part 2 Above

 

Although MOST of us are very aware of our Federal Government and the Issues over Chronic Pain Patients, and their "messing around" with our very medications that keep us "with some type of quality of life" we also lest not forget, that our STATES also have a dramatic effect also. 




Saturday, September 2, 2017

New Federal Task Force to Address Opioid Prescribing

New Federal Task Force to Address Opioid Prescribing: By Pat Anson, Editor

The federal government is forming another advisory panel to study and
develop 'best practices' for treating acute and chronic pain. And for the
first time, the feds are seeking nominations from the public for members to
serve on the panel, who would represent



SERIOUSLY MAKING A NOMINATION OF MYSELF TO BE IN THIS SPECIAL TASK FORCE!

Thursday, August 17, 2017

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





Sunday, August 6, 2017

The Memories of Life BEFORE Chronic Pain & Illnesse"S", thoughts of simpler times, knowing one should NEVER be "complacent" & not share your feelings, all too often "we" lose out

In The World We Now Live In, All Too Often Many Of Us Remember Times that were Simpler, Many of Us Without Chronic Pain and Suffering, not Fighting to Get Into See Physicians, or Fighting to Get Insurance Companies to Pay the Bills. We also Were Not "Surrounded by A Sea of Specialists" Parents and Kids Never had to Be Concerned Over "kids Abusing Drugs", we could Leave Our Windows Open, Our Doors Unlocked, Those Time When a "Mean World" did not exist. You Could Walk down The Street, You could Drive down The Highway, Kids could Play in Their Yards, We were not a Country, And World filled with Violence, Hatred, Bigotry, None a few years ago would have been a "Suicide Bombers" or 'Home Grown" Terrorists; in fact any type" of Terrorists

 

 

Time were filled with good memories, vacations with families, getting together with the Neighbors, Having a "treat" of a Hamburger and Fries on Paydays. Deer Hunting, Fishing, and Our Minds Filled with The Promise of a Brighter Future... now WE LONG for those times that gas was .50 a gallon, and $10.00 would buy enough groceries for a month. We have such gratefulness and I know for myself, a "Longing" to live in "that World" again...

 

I had been "going over" all kinds of memories, good times. lousy times, and all of the "quickness" of how time goes by. My daughter and I were talking on the phone yesterday. She had taken the boys to get school shoes and clothes. She was saying that of course Logan, the youngest, still has a "school supply" list, yet James, who it just dawned on me, my oldest Grandson is going into JR. HIGH SCHOOL this year. So, of course they wait for many of the supplies because the teachers will want different things. That got me to thinking and remembering what seems like just yesterday, that Amanda and Jimbo brought James up from Corpus, he was only about 6 WEEKS old, born on December 6th, 2005. I had really just moved back to Texas, after being in Seattle for almost 5 years, and only had been back myself for about 2 weeks or so.

 

I got to looking at all of the photo's over the years, how little James was, then Logan, who is almost 5 years younger than James, is also getting much older, growing like a weed, and is now I believe 7 and going into the 2nd grade! Heather my Granddaughter, who was only 2 years old when Amanda and Jimbo began seeing one another, is now been out of high school over a year, and is starting on her 2nd year in college, working, and getting ready to go to nursing school probably next spring. As I thought about my years, my hopes, dreams, possibilities, the things I accomplished, things I wished I had accomplished, and that "list of deals, times, events, and yet dreams" of what we "hope" we get to do, before we are "no longer here" on this "plain" and have stepped into another realm. I've been blessed with the incredible children, grown, never was into loads of trouble, drugs, causing problems, both have the high school diploma's and have some college, certificates and so forth. I had a son in law that is that is the most caring, nurturing, loving, comforting, care taking husband, son and Father I believe I've ever known.

 

 My daughter and him met when she was about 15 years old, and as of today, and what will probably be the rest of their lives, that have a stable, happy, loving home, with three incredible kids, and they are blessed, and I am blessed and a better person for my daughter, son and son in law. When I think about how much I "missed out on" from my personal ideology that I so wanted to accomplish, I began pondering that first of all, when I was in school, and for the most part when my kids were in school, there was NOT a great deal of "meanness" of drugs, of those who choose to terrify other kids... life honestly was much simpler, especially when i was in high school. Yet, the very things I felt I would either "do" etc in my own personal life, much I never accomplished. I wanted to be a nurse, and in the medical profession, from the time I was about 13. I began my "writing" at 14, and felt I would be compelled to be a very accomplished author in the time to come. I wanted to travel much more, even overseas to many of the European countries, yet I've only been out of "the states" once, and that was to Mexico. I never even got the chance to go up to British Columbia when I was in Seattle.

 

It happened that I went shortly after 9/11, and things at the borders had really changed. In fact, I never owned a passport. I've seen many of our states, had many vacation from those with my parents, to those that I took my kids on, to those I've been with someone else, and then even by myself, to Austin TX, to Lancaster CA, to Phoenix AZ, been snow skiing, and have had many great experiences, even though I also "missed out" on many, that for one reason or the other, life turned me a new direction, thus I did something else, other than what I "thought I would".... at 57 years old, and suffering from several chronic and severe illnesses and pain, it makes it more difficult that when I was younger and in better health to jump up and spend a weekend in San Antonio, or go to Dallas dancing, or just for a night out on the town...

 

 I still have "some of those dreams" on a list, I don't really like the term "bucket list"... for some reason that just does not sound correct to me... but I have come to see that life is a challenge and LIFE FLIES BY TOO QUICKLY, you blink and you are in college, and you blink again, and you are over 50... pondering over where the time went, and why you did or didn't do some of the things you did. I've had many people over the years ask me how I "withstand" the illnesses and pain... 

 

well "faith" and "hope" along with what little bit of family I have, along with my "fur babies" keep me trudging forward even when i feel like throwing in the towel. So, tell everyone you love, that you love them, every chance you get, never take one moment for "granted" for the next one may not be there, never pass up an opportunity, if you can, to do something you have always wanted to do, be kind to those around you, be courteous to the elderly, those who are suffering, and even if you don't "give financially" giving FROM THE HEART, and with NO expectations, other than it made you feel good to do something... for coming from the heart and soul, is truly blessing someone else. I sit here today, alone, well Peanut is here, but no other "human" - and I do get lonely, I do at times feel that I've "failed" at marriage more than once. But, in my heart of hearts, i do cherish the "love" I've had, have and maybe someday have again.... Thanks to each and everyone of you, that give me a "lift" when this life seems to "weigh me down".... for you are a true blessing yourself....

Saturday, July 29, 2017

AS I post this, and see how many concerned people come to my blog over the Healthcare Crisis I spoke about... I continue with things I usually don't discuss - Our Political "Future" and the Effects on All, Especially the Chronically Ill



As I watched the Night New last night, and once again, the "fight" over Health Care, continues to cause many, many of us terrible stress. Either we are ill, or have children or other family members ill, or cannot afford the outrageous and constantly rising costs of healthcare and health insurance.

Believe me, after the hip fractures last December, then the cervical neck surgery this past April and the RIDICULOUS CHARGES FROM MY DOCTORS, FOR A CERVICAL BONE STIM DEVICE, TO the the rest of the charges from an ambulance, to the radiologists, the anesthesialogists, to medications, and more, it is like that governments just soon us to "die" rather than "burden" the nation with our chronic health problems.

But, look at "John McCain"... you can bet the government is making sure he has the very, very best care, and all of what he needs to hopefully survive the tumor they found. Which of course I hope so also. I "no matter what "party" I lean towards" would not want anyone in our governments bodies to be ill and pass away.

But, those Congress men and women, and all of our governmental people get the best care the rest of their lives. Even after they are no longer involved and "retire" they still are well taken care of, with pensions, healthcare and benefits.

Which I am not putting down, BUT WHAT ABOUT ALL OF US THAT ARE HERE SUPPORTING THEM? Their own constituents that are the ones that "vote" them in? I am sorry but our President is just not the right person for the job. Not when it comes to many things, he just does not know or understand how to handle. And this constant "tweeting" of major information I feel is somewhat ridiculous. Not ALL that goes on, due to many reasons, needs to be "tweeted" over the world!!!!!

Here is my post from Facebook, as to what I went through last week with doctors and now more health issues that I am fighting with...

I'm totally exhausted! Yesterday having 2 doctors appts in Dallas, that were scheduled one for early morning and the other mid afternoon in two totally different locations, about got to me this morning. But, my son and I did have a great time together. I was glad he went. We got to talk about lots of things, as well as he got to see my Rheumatologist and my Pain Dr. whom he had not met either. I wanted him to witness himself what fantastic doctors I have, and he immediately saw that my Rheumatologist was truly a "God-send" as well as my Pain Doctor also.

But, now my Rheumatologist wants me to see another "specialist" which I did not even know existed, which is a Metabolic Mineral and Bone Specialist, mainly due to the Osteoporosis, in which he was extremely concerned due to those that have "fractures of the hip" especially due to osteoporosis, have a 20% HIGHER mortality rate than those without one and without osteoporosis, plus just having the RA and Lupus, already leads me into a higher possibility of not "living as long" as others without it. This doctor also may have other options to "treat" the osteoporosis, and may provide answers about why I'm having the "chilled totally drenching night sweats, since this could be related to an "insulin" problem with my metabolic systems, which can be a "parathyroid" which is NOT related to regular "Thyroid conditions" and other issues that may lead us to find out more about chronic health illnesses, that maybe what I could be having and don't know it. So, I have to have another bone density scan next week on Tuesday, then schedule an appt with the specialist at at SW Med Center in Dallas.

I have to have the scan and results to take with me, so I am waiting before I schedule the appt. Hopefully it will be soon, so we can find out what could be going on, which as he also said, I am a very "complicated" patient, which ALL of my doctors say, so we shall see. Then I had my pain ump refilled, and I guess i should have "insisted" he up my meds. I am in so much pain again today, I am about in tears.

 Also he thinks my finger problems, are eczema, so he called in some oinment for those increased my Sulfasalazine, by 500 mg more twice daily, and if we don't see results in 2 months then we probably will move on to Acterma for the RA... the Enbrel may not be dong it's job, if by 2 more months I am not much better. So, again a med change... probably.... anyway, lots going on, and I hurt like hell... but I've got to get out briefly for a couple of things, then I hope to have myself on the sofa. We have yet another horribly hot day with "heat warnings, again... for about the 5th day.... I will probably not post much more today, just wanted to let you know a bit about my appts yesterday...

Friday, July 21, 2017

The 50-State Network Health Advocacy, Creaky Joints, The Global Healthy Living Foundation and "Patient Counsil" that are at the heart of these Arthritic Illnesses & "Chronic Pain" Foundations



I've been a "member" and follower of "Creaky Joints", and "Arthritis Power" plus following Seth Ginsberg for a very long time. He began his venture of these websites, due to his own struggle with pain and arthritic illness that began very early in his life.

I've always admired his tenacity, and the way he gives each of us, the patients a "VOICE' about our own Pain problems and Arthritis health problems, and there are many. I can definitely attest to the MANY types of Chronic Pain, that myself and MANY of us have to try and deal with daily. Which includes trying to get to the proper doctors, get the medications we need, get insurance to pay for the help we need, all the while also fighting "Congress" on the Federal and State Levels, so we can continue to get the "Best Healthcare" for "Chronic Pain" possible. I believe that many people that have not experienced health conditions such as Rheumatoid Arthritis, Osteoarthritis, Juvenile RA, along with several other "arthritic" conditions, don't get the "horrid" pain all too often patients live with. Of course, pain, is not the only factor that effects every part of ones life. We often live with stiffness, joint swelling, mobility issues, medications that cause some "harmful" effects, such as corticosteroids. Like my PCP says to me, Prednisone is a "necessary evil" for me. Yet, I already was predestined to have osteoporosis, thus with my body frame being small, the medications, along with RA and Lupus, have me at the "severe" range of osteoporosis. This simply means, THAT is more than likely why my hip fractured after the fall I took in December last year. If I had not had osteoporosis, I may have came out with just a very bruised thigh and hip. Yet, it was fractured in two places. Also, those of us with this dreadful disease also run the risk of "not enough bone" to have surgery on. I have ran into that one with my neck. After this 2nd surgery, now I face "not enough vertebral bone" to even "repair" anymore. So, this 3 level surgery I had in April HAS TO WORK, as my Orthopedic Surgeon put it. If not, then I run the high chance of having a "totally fused" neck, where I could not look UP or down... or move my head very much side to side.

I had a very informative "phone conversation" with several of the people from the  50 State Network and the Patient Counsel all a spin off by Seth, as well as The Global Healthy Living Foundation this afternoon. I feel very privileged to be a part of these foundations. I hope to help further educate patients, doctors, find ways to get bills passed at the State and Federal Levels of government, along with other ways in which they help patients, there families, and close friends and help to pave the way for more guidelines on several extremely important topics that effect many of us, from "biosimilars", to "all ways" that patients are effected by health insurance or lack of, medications, finding doctors that can help, and ways to cope with the red tape involved when you are chronically ill,

Most that know me, know my own personal journey through the pitfalls, the times of doubt and sorrow, and the sometimes triumphs over these diseases. All too often patients like myself, have "several" pain problems, not just one. Which makes our life a living hell at times. We fight for treatments, medications, insurance that pays, along with every step we take. When you are chronically ill and/or in pain, it's difficult enough just to get out the bed each morning, much less take the stresses of finding proper care, proper medications, trying to get insurance to pay, and now fighting the government so we continue to be able to get the care we need on ALL LEVELS.

The 50-State Network Patient Network, along with Creaky Joints, and The Global Healthy Living Foundation are helping to get our governmental bodies "on board".  I am also now a member of the "Patient Counsil", and will update you more as I move forward in my own venture and learning about everything. They provide a great deal of information for patients, as well as those who are playing other "active roles" in these foundations Rather that taking away what we need to survive and try to thrive through all of the days of outrageous pain, we are out there fighting for not just ourselves but ALL CHRONIC PAIN PATIENTS, LOVED ONES, FAMILY, JOBS AND MORE!

I am hoping to become more active in a role with the 50-State Network, already involved in Creaky Joints, and to learn more about the Global Healthy Living Foundation. As the days go by and I learn more, I will definitely keep you posted, on how you can contribute. In the meantime, all of the links are below, so YOU can go to the sites an find out more also.

By the way when I was reading through the documentation from "Creaky Joints" one "phrase" really stuck out to me. Of course much of it is brilliant and so helpful to patients, caretakers, families and close friends. We've all heard the phrase "Do No Harm" which is of course the main "vow" of physicians. One of the things they pointed out though was that does not "just mean" physical harm, but mental and even "financial". I felt that really "struck" a nerve with me. With the very high cost of surgeries, and the ones I've had are always over the $100,000.00 dollar range... yet, unless you really "ask" for help, either for a payment plan, or "financial aid" of some type, often you are NOT offered it. I've found out there is NO SHAME in calling a health care provider, especially with a huge "bill" from surgery etc. and asking for some type of help. Often if you "pay it all" at once, they will give you a percentage off the bill, or like myself, on this "Bone Stimulator" that I was not told runs $5,000.00 AND ONLY LASTS ABOUT 6 MONTHS, and is NOT reusable for future surgeries. So, my part was going to be over $600.00, and that is just a "drop" in the bucket of bills, from hospitals, doctors, the Ambulance, ER, Anesthesiologists, Radiology, and so forth. I called and found out that I "qualified" for complete "assistance" for the entire 600.00. Yet, if I had not "asked" they never would have "offered" for sure. Just on portion of what we deal with on so many levels, with any chronic illness. 

Also, those of you who deal with the stresses of "Arthritic" illnesses may want to check out the app "Arthritis Power". The details are at the URL listed below... and you can also get it at the "App" Store at Apple.com or on Google Play.


Please visit the sites, and see just how incredible these places are along with seeing how YOU the PATIENT can be on board also, to fight the "good fight" for all!

https://creakyjoints.org/


https://www.ghlf.org/


https://www.50statenetwork.org/

 

https://arthritispower.org

 


Thursday, July 6, 2017

The CDC, and others in GOVERNMENT do not KNOW WHAT TRUE SEVERE DAILY CHRONIC PAIN IS LIKE FOR MANY OF US WHO ARE TRUE PATIENTS!!!!!

I am so INFURIATED at the NEWS as well as the CDC, government, and THOSE WHO SO STRONGLY OPPOSE ANYONE NEEDING PRESCRIPTION PAIN MEDICATIONS, that I HAD to get up and turn the channel a bit ago!!! I had turned my computer off earlier in the day due to severe "dry lightening and thunderstorms" BUT AFTER DINNER, I came to turn it back on and state my MIND ABOUT THIS BULL!!! I would LOVE to take ANY ONE of the people from the CDC, from the GOVERNMENT, FROM JUST PLAIN OLD OFF THE STREET folks, AND ALLOW THEM TO HAVE ALL OF MY OWN PAIN, PLUS MANY others PAIN for just ONE WEEK, WITHOUT MEDICATIONS!!!! I don't care how much you "punish" those who need the meds, and there is NOTHING ELSE that helps, THEY WILL FIND SOME WAY, SOME HOW TO GET "HIGH"... whether it is ALCOHOL, OFF THE STREET DRUGS, THAT LORD KNOWS WHAT IS IN THEM, INCLUDING HEROIN, Or anything else they can "use" to get what "WE" the NEED THE MEDS DO NOT GET AND THAT IS SOME KIND OF "HIGH" from them! Other than when I was in my teens and early 20's for sure, AND I COULD NOT GET RELIEF FROM ALMOST 2 OR 3 TIMES A WEEK SEVERE MIGRAINES, that SENT ME TO THE ER MORE TIMES THAN I CARE TO COUNT, and AT THAT TIME, for a while, I felt "something" that was kind of like giving someone an "I don't give a damned" drink, or medication that they may not take very often then YES, you may feel that "high" for a few moments, BUT those LIKE MYSELF, WHO HAVE MULTIPLE ILLNESSES, THAT CAUSE DAILY SOMETIMES SO SEVERE PAIN, THAT MEDICATIONS EVEN DO NOT GET RID OF IT ALL, WE DON'T OR I SHALL SAY I DON'T HAVE A "HIGH" FROM IT! I would GLADLY throw away ALL OF MY MEDS, If somewhere there was a "MIRACULOUS" CURE FOR lupus, RA, DDD, DJD, OSTEOPOROSIS CAUSED BY PREDNISONE, WHICH IS A NECESSARY EVIL, NOT AN OPIOIDS, BUT CAUSES MORE DAMAGE WHICH LED TO MY HIP FRACTURE.... If I could take NSAIDS, or anything else to relieve my pain, I would do it in a "New York minute"... BUT you TAKE AWAY PAIN MEDICATIONS FROM LEGITIMATE PATIENTS, and you will see MORE ALCOHOLISM, THOSE THAT CANNOT WORK, CANNOT TAKE CARE OF THEIR FAMILIES, ARE IN THE ER, HOSPITAL, AND TAKING ILLICIT MEDS THAT LORD KNOWS WHAT THEY CONTAIN... You will see a DRAMATIC RISE IN SUICIDES,, those that LIKE MYSELF, WITH A HEART PROBLEM, IF I WAS IN SO MUCH PAIN, WITHOUT MY MEDS, I WOULD PROBABLY NOT LIVE 6 MONTHS, THE REST OF MY BODY, INCLUDING MY HEART, would NOT be able to take the pain!!! It is a strain not just "where it hurts" but all over, and it effects you mind, the rest of your body and your soul, spirit and takes away all quality of life! One cannot raise their kids, work, or even there would be DAYS, WEEKS, MONTHS SOME WOULD BE COMPLETELY BEDRIDDEN, without RELIEF!!!!! I am SO SICK of BEING PUT IN A STEW POT, AND MIXED IN WITH THOSE WHO "CHOOSE TO ABUSE".... NOT ALL OF US ARE "ADDICTS... I don't take ANY of my medications, NONE FOR SOME KIND OF "ESCAPE OR HIGH" OR WHATEVER those that abuse get... IN FACT, I've NEVER HAD ILLICIT MEDICATIONS, other than at about the age of 23, I smoked a "bit of weed" and I HATED THE FEELING IT GAVE ME, same way with DRINKING ALCOHOL, I don't like the way I feel or that "loss of control" it causes... of course many of us as younger crowds years ago, may have drank too much, or experimented with "not legal things" yet most of my generation did not even know about "illegal drugs" in high school. It was not something MANY OF US HEARD ABOUT OR ESPECIALLY HAD ANYWAY WE WERE AROUND THAT TYPE OF THING".... I fully intend, on when I "SETTLE DOWN" TO GIVE THE CDC, THE GOVERNMENT, BOTH STATE AND FEDERAL, and ANYONE ELSE, a "PIECE OF MY MIND" ABOUT this bull.... you take a couple of states, with doctors who are NOT real doctors, or have "backwards" folks that use everything else also WITH prescriptions, and they with or without those meds would either wind up in the ER overdosed, or would find a way to get what they want, off the internet. or cross borders, IF THEY CHOOSE THAT LIFE, THEN NOTHING ANY ONE ELSE DOES WILL STOP THEM! I AGREE with 'regulation" somewhat, but most CREDIBLE DOCTORS, will NOT cause "harm" to their patients! By any type of medication, etc.... so yes kick out the "bad seeds" but leave those who truly are chronically in daily pain (HELL they were even stating some "SEVERE CANCER PATIENTS" MAY NOT NEED PAIN MEDICATIONS! ... WELL, some may NOT, but I would 'ASSUME" many would never go through chemo, radiation, and continue to want to live if their disease brought them intense, severe, and daily pain!!!!! I am sorry if I OFFEND ANYONE" But I am really perturbed on this subject!

Kratom??? Have YOU heard of it? Used it? Know more about it.



Kratom, it was shown to me by a friend on Facebook, 

 

that swears by it. She said it has totally changed her life, and given her freedom from Chronic Pain, and many of the horrible effects of other medications, she has been able to either cut down on or stop.

There are several "strains" of this "herb"... that is derived from a leaf on plants found in

"Kratom is a plant that takes its origin from several countries belonging to the Southeast Asia. Also, known as Mitragyna speciosa, it is a traditional remedy in Thailand and other nearby countries for several ailments"


The strains are different, and some are used for anxiety, others for pain, stress, to be even a "pep"pill, and give you energy.... each one seems to do something different, and it depends on the type, and how much used for whatever ailment you may deal with...


So, here are a couple of links below and I would LOVE TO HEAR FROM YOU!

IF YOU HAVE SEEN THIS PRODUCT, USED IT, KNOW MORE ABOUT IT, PRO'S OR CON'S I REALLY WANTED TO GET INFORMATION FROM THOSE WHO HAVE EXPERIENCED IT!

 THESE ARE just a few links and there are many more, and many about the different "strains" and what they are used for....

KRATOM

http://kratomonline.org/maeng-da-kratom/


http://kratomguides.com/positive-negative-effects-kratom/

 

http://www.phytoextractum.com/buy-maeng-da-thai-kratom-capsules


http://www.mitragyna.com/effects