Pain Awareness Month and Suicide Prevention Month - Do We think about just how badly chronic pain can be and for some, almost to the place of not being able to live with it....

This is so well put! WE, many of us, with chronic daily pain, the kind that without any treatment would leave you in bed, on the sofa, and without ANY quality of LIFE!!!!! Yet, those FEW who choose to "abuse" medications, cause a ridiculous amount of questioning, hoop jumping, "looks at us like we are "addicts" " and even many that all of a sudden can no longer GET their meds... as she put it... to HAVE A LIFE  ... we do not use meds to "escape" from living... that in itself was one of the best ways I've heard to speak about the people that abuse medications. But those that do cause harm by their own abuse, and making life almost unbearable for those that do everything correctly.... just to as I say, and the article says to have "life"... NO PAIN medication EVER completely takes pain away.... it makes us "able to deal" with the pain better, when it is "less" than unbearable. I have an implanted pain pump that my Pain Doctor implanted in 2010... and we have "tweaked" the medication in it over the years, if need be. But, I still have a script for "back up" pain... maybe I am having more pain than usual from a weather change, or from doing something in my daily life that may exaserbate the pain at times. Yet, nothing takes it away... it helps me deal with what is pain remains... it allows me energy to DO my errands chores, go out for a day to have a bit of "off time" and so on.... if it were NOT for my pain medications, I would almost be to a place that it would be "intractable"... more often than not... and in fact, due to a lower back lumbar/sacral problem, there have been at least two times in the last 3 years that it was like I have NO PAIN medication at all.... In fact I even went through and had a talk with my pain doctor. All I wanted to do it sit in the floor and cry, the pain was so horrid.... I went that way for weeks... and we found the problem... and now due to this abscess I am still not able t0 have surgery... but at times even with what I have, it can be to the point you wonder if you are not just going to go insane from the pain.  So, each time I see or hear about how many "abuse" medications and all they want to do to make it almost impossible for us to get our medications, it just infuriates me... for ONE DAY I would like to "hand over" my pain to some of those that think it is all "bull" and let them walk in my shoes for 24 hours... I wonder how they would feel, when they awake to stiff, swollen, throbbing hands, knuckles, feet, ankles, hips, pain down my leg, severe headache from Lupus... and see how long they could "tackle" the pain without any help from medications... If you gave them a week, I bet 95% or more of them would be begging for relief..... And I have had several people over the years ask me how I "cope"?  How do I get up and around with the pain and chronic illnesses, the fatigue, the swelling in my joints the stiffness, the pain that does not matter if you sit, stand, lay down... it is just there,... and by "faith" and "hope" and taking ALL of my medications as I am instructed, and trying to stay as active as possible... helps me to cope... my writing, my blog, being here on FB, my activism, advocacy, and my Ambassador roles... the AF, WEGO, Lupus Foundation, IFAA.... all of those and more, that give me the will to know I must FIGHT not just for myself, but for others out there just like myself or even worse.... Rhia Steele​

http://nationalpainreport.com/pain-awareness-and-suicide-prevention-8827504.html

http://nationalpainreport.com/

 

 

After reading this article I felt compelled to share it. This is one of the MANY complicated emotions when you are dealing with Chronic Daily Unrelenting Pain....

IFAA and the Walk for fundraising sponored by AARDA! To Help get a handle on Autoimmune Arthritic Illnesses!

I am not near any of the "walks". But, I wanted to show my support so I joined "virtually" the IFAA Team!

There are dozens of reasons why WE need as much support as possible when it comes to Autoimmune Arthritic Illnesses!

We need more research, more Rheumatologists, and Pediatric Rheumatologists also. We need better medications, hopefully someday with less side effects, and of course we desperately need to find a CURE! and/or STOP these horrid life altering, life stealing illnesses, diseases and syndromes well before they take over!

So, I invite you to walk, or walk virtually. Or give a donation, and you can "give" what you feel you can. Any amount is one more step for hope, help, research, medications, reasons why our immune systems go "haywire" and A cure.

I did not realize until this morning that the actress "Kelly Martin" whom I just happen to LOVE, is the National Autoimmune Walk Ambassador this year! Her sister who suffered symptoms for a long while and then was diagnosed with Lupus, that later took her at a young age gave Kelly a longing to try and stop these horrid illnesses.

I am an avid fan of Kelly's. In fact I record all of her movies on the "Hallmark Channels" and sometimes watch them more than once. I think she is a tremendous actress and an amazing woman.

Here is a link to the page where she has an open letter about her personal situation due to her sister's illness and why she supports AARDA and this walk:

http://www.autoimmunewalk.org/aawalk/ambassador.asp


Here is also a link to the IFAA walk Team Page!

IFAA Buttahflies

Here is my "personal page for the walk



http://www.autoimmunewalk.org/aawalk/participantpage.asp?fundid=1150&uid=5837&role=1

When You are Unable to be somewhere, participate in events, whether family, friends and your activist, advocacy things... the challenge is to NOT feel guilty or as if you are letting others down....

 

 

https://creakyjoints.org/blog/rsvp-blues-when-autoimmune-disease-keeps-you-home-saying-no-to-invites/#.Vfg6WntAzIU

 

A great article about just how we all too often feel - when we deal daily with Chronic Illnesses and/or Pain. The challenges of being able to be at events, be with family and friends... how we feel "guilty" for thinking we are letting others down... it is NOT our fault, yet, I know for myself, I feel guilty, frustrated and like everyone around me thinks I am just making this up and I am not all that sick... People in general see us outside the home, when we are "okay"... many do not witness those days, weeks, or even months that we are NOT okay....

 

Medtronic's Pain Pump Medtronic "2" has issues and needs to be "fixed" - Bothering me immensely this Pump has been a total Life Saver for Me!

 I've had the exact same pump in since 2010! In fact it will be 5 years next month, in October since I had it put in. I've never had any problems with the pump. I get it refilled about every 3 months, and it can always be adjusted, and has been a couple of times over the years. But, I can also "give myself an extra bolus" every 12 hours with the 1st "PTM" that came with this one. I was one of the 1st patients to get this particular one. I have a handheld device that after 12 hours, allows me to give myself an "extra" bolus of medication. I can hold the "Patient Treatment Manager" (I think that is what the PTM means) up to the top of the device and it sends a signal to it and if 12 hours have gone by, then it gives me a tiny extra dose, each time I do that, spread again over a 12 hour time frame!


I knew when the pump was put in, that after about 7 years or more, I will probably face having to have it replaced. The batteries can run out, but it can also be longer than 7 years also. Yet, when that time arrives I want to know I can get the same one implanted!


It has been one of the most positive changes in my life. I just don't know what I would do without it!










http://www.painnewsnetwork.org/stories/2015/4/27/fda-order-stops-production-of-medtronic-pain-pump#at_pco=smlrebh-1.0&at_si=55f813c00f886161&at_ab=per-3&at_pos=1&at_tot=4

Discovery Could Lead to Earlier RA Treatment — Pain News Network

Discovery Could Lead to Earlier RA Treatment — Pain News Network 

Sharing more great news in regard to hopefyully finding a way to detect RA and Osteoarthritis much sooner by other lab work!

IFAA Post and an article about the "Cost of Chronic Pain"

http://www.motherearthliving.com/health-and-wellness/mind-and-body/cost-of-chronic-pain-ze0z1404zhou.aspx?PageId=1


Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!

 My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!

And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...

Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!

And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!

And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!

Hell, my TEETH, cost almost 15,000.00 when it was said and done....

Distressed, Disgusted, Distraught, Disturbed... AND MANY Other "Realms" of Distaste I Feel With Our Nation, Our News, Our World & All Who Choose to Bury Their Heads in the Sand...

If YOU are trying to figure out exactly "why" the name of this post is "OFF" from my usual, that is because IT IS, "Off the Beaten Path"...

You can say that this involves "physical", illness, pain, destruction, devastation and moreover, I am totally DISGUSTED with many of us, and I must say I include myself in that "us"....

ow the "news" can sit around and bring about MORE "crap" about "email servers, emails that are eons old, Trump and his debauchery,, along with each and every other "Nominee" - whether "Red" or "Blue" is beyond and above what I comprehend!!!

When just here in our own nation, we have thousands upon thousands of acres of precious land, homes, trees, earth, that first has suffered immeasurable damage from drought, and then to be completed brought down to its knees with wildfires above and beyond any one's imagination act as if it is just another day. W have "EVIL" doers on one of our main Highways through Arizona, SHOOTING arbitrarily at any and every thing they in their warped minds they see.

What about all of the flooding, the horrible and completed demolishing of many of our states in the past months with water, MUCH, MUCH MORE water, drowning people, again demolishing everything in its path, leaving people once again homeless, without jobs, and the loss of everything that they ever worked for and cherish.

The EVIL out there that lurks in movie theaters, in Malls, on Highways, on our own city streets, that think no more about shooting people and killing them than they do breathing air... the morality, the greed, the power hungry, the people that have NO care for "human life"... and what makes that even worse, is OUR YOUNG PEOPLE... are many of these horrid, evil filled "humans". How can someone so very young get to be so very wicked in a few short years of life?

How can the "educated" ones that have knowledge at their fingertips, families that love them, take off to some "foreign" nation that literally HATES all Americans, and "join forces" with those who intend to not just harm us, but kill us, and then they strap on "bombs", blowing themselves up, in the name of "a higherpower"????


NEVER have I ever thought not one moment about me taking my own life in the name of the "Lord and Savior" that protects and saves me. Not only would I disobey one commandment, but I would disobey the very fiber He made me from!!!

It makes me literally SICK to watch the news be filled with all of the "junk" about a new President!!!!  Yes, the upcoming election is important to all of us in the USA!! BUT, at this moment it is NOT above the sick, the dying, the starving, those running for their lives from war, killers, that kill not just men, but women, children - it matters NOT who it is, they kill them... People are literally running from fires that are engulfing their homes, and from flood waters that are washing away their lives...


I "rarely" discuss politics... I feel ALL are entitled to their own views... BUT, I sure as heck right now am not concerned what so ever about a Hillary Clinton "private server" and emails that probably don't have a darned thing to do with her being a Nation Changing President!!!! But, I can tell you, if we allow that LOUD MOUTHED "satan tongued" Trump to be over us as a "Leader" of the FREE WORLD... well he will have us blown up within the first year by someone he has opened his foul mouth to in some other nation, and makes them hate us even more than they already do....

And whether you are a "Republican", "Democrat", OLD, YOUNG, MIDDLE AGED, MALE, FEMALE... or of any race... NONE of that matters either!!!! I want the President to be someone who can take the reigns and reign in CONGRESS... and STOP CONGRESS from being a bunch of Kindergarten's and bickering, mud slinging, name calling, and just being plain bull headed and only want what is best" for them... WE "elect" people that are supposed to take care of our nation.... what email they sent 4 years ago, to a friend in Florida, who cares?????

But, you can bet, whether a Congress Person, a banker, lawyer, doctor, or Indian Chief, MOST are OUT for the OWN GAIN!!! GREED, CORRUPTION, LIABLE, SLANDER... all bull... which has gotten us no where over the last 16 or MORE years, but deeper in debt, while the "few" with that "power" get richer and the middle class struggle to keep a job, put food on the table and a home over their families heads....

So, rather than going on and on and on.... about who said what to whom on their "Blueberry - Blackberry - Raspberry" or these "Smart phones" that are surely "dumb" to me, I don't care.... ALL of us fall short of perfection... ALL... and SOME of us have never even thought to strive for being "perfect" - Yet, we try to be the moral, upstanding, truthful, loyal, and honest as we can be....

So, to HECK with 16 or whatever "Republican Nominees" - ridiculous - and thank goodness PERRY quit!!!! Good news for the nation.. and now TX is rid of him also...


And whomever can stand up, and tell ME, how they intend to try and turn this country around... our stock market reeling - one day up and the other the "worst" down in history... people's life savings not making a dime, and Social Security and Medicare... OH HELL that is another BOOK, not just a post... someday, after I finish including my thoughts on those, my book may be much THICKER than anyone thought I could ever write.....

So, when you bow your heads this evening at a meal, or with your kids as they go to sleep - or if you do as the Lord tells us, "hide in your closet" and pray... then you have a direct line to WHOM can turn this country around.....