Day 10: Pain Awareness Month - US Pain Foundation and a great video to find out much more about Pain Awareness Month, the US Pain Foundation and How you can help!

It is OFFICIALLY September 1st, National Pain Awareness Month 2015 begins.....

Morning everyone here at my FB "family"... It often feels more like "family" at times when I come to my page here, along with my blog. There are several of us, that find comfort in one another, especially when the "storms if pain, illness, and life" begin to be overwhelming. For myself, this entire year so far, has not "turned out" at ALL like I had "planned"... Of course I should already know, after 55 years of living, that "Rhia's Law" is that if it will be COMPLICATED, COMPLEX, CONFUSING, FULL OF DRAMA AND STRESS, DIFFICULT.. just to name a "few" of my thoughts, it shall be happening to ME. Nothing ever comes easy for me... as much as I would love it to, and I've often wondered why, life has to be so darned complicated - as all of us with any type of chronic illness and/or chronic pain, "Living Life" is never "easy"... we battle with illness and pain, we battle with medications, doctors, pharmacies and most of all insurance. We battle just to get up every morning, and try to be our best, whether that means sitting on the sofa all day, being in bed all day, or up and about with errands, work, and the other daily things we accomplish in life. I had just been reading in a local small magazine that usually continues interesting information about our doctors, or different places here involving health... therapy, gyms, alternative medical practices, and the like. They also usually focus on the local people, that either have a beautiful home, like something that may be in the "Historical District" or a new group for different types of illnesses... one such here I was just reading about is Parkinson's. Now even though we are educated about many different ailments, we sometimes tend to think that diseases like, Parkinson's, Dementia, Alzheimer's, arthritis, just to mane a few, are "elderly folks diseases"... yet, right here in our community. One of the reasons why I decided that I wanted to participate in US Pain Foundations, "Beautify in Blue" campaigns here in my home town, is exactly what I have wanted to do for a long while now, with Lupus, RA, Sjogren's, and those living in chronic pain... to begin to educate people here, to bring more awareness, rather than rumors, or misinformation when it comes to any type of severe disease that is all too often "chronic" in nature, and it envelopes and takes away the "life" that you thought you would have. When I began years ago having very severe migraine headaches, there are not a great deal known about them. The doctors for the most part, would either not really know what to do, or give you pain meds... that later ma have been considered "habit forming" and such. But, I worked MANY years at several different jobs, and in one way or the other, the migraines interfered with my job and my life. I wanted to be a nurse, and had my sites on that profession for many years. Yet, when I finally had that opportunity, the headaches would have been an interference in my schooling. So, as badly as I wanted to pursue that career, I knew it was not in the cards for me. I did go to college mainly during the evenings, after work, and got my AD, and the most proud moment is when I was inducted into the "National Phi Theta Kappa Honor Society at the college I attended. I of course still have my lapel pin, and even had special lettering made and put it in my car back glass... I was so thrilled.

But, I still fought around the damned headaches... then new medications came out, none of which I could take, or they simply did NOT work... I always tell this one story, I had to go to the ER one night with a really bad migraine. It had been going on for days, and I just could not get it to "cease and desist" ... the ER doctor, I think rather than giving me what they usually did, decided to give me "Compazine". Well, this nurse came in with a pretty large syringe of medication that I believe was to go into the IV they had started... It did not take long, and I began to feel "odd"... it was just not working at all in fact, and I just felt like I was going "nuts"... so rather than the doctor trying something else, he told her to give me yet another round of it... I literally got up, pulled the IV out of my arm, wrapped it up to stop the bleeding and I left... I was having some kind of horrible reaction to that medication, it was NOT working, and I certainly did not need anymore.... So, those types of events in our lives, makes us want to stand up for not just ourselves but others just as we are... ILL and yet some physicians just DO NOT either listen, or they prefer the patient to be quiet, or there is just too much misinformation being spread around.... SO, TODAY and for the next 30 DAYS I hope you join all of us in promoting the correct information and awareness about Chronic Pain....

 

Facebook Page  https://www.facebook.com/U.S.PainFoundation

 

 

Take The 30 Day Challenge by the US Pain Foundataion

 

http://uspainfoundation.org/

 

 

 #ITookThePledge

 

September National Pain Awareness 2015 starts tomorrow! "Beautify in Blue" campaign by the US Pain Foundation.

 Also see this link: http://www.uspainfoundation.org/ and sign up for the 30 day Challenge!!! There is a .pdf that you can find there and I have posted the information in a post below... come in and join!!!

National Pain Awareness Month September 2015 - US Pain Foundation and the "30 day" Challenge for you!

The National Pain Awareness Month coming very soon for September 2015, and sponsored by the US Pain Foundation have all types of things YOU can do to spread the word about Chronic Pain, to everyone, whether online, in your community, state... you can help!

My Mayor here in my hometown, has signed a "Pain Proclamation" and they have also okayed me to put up Posters, Ribbons and so forth for the "Beautify in Blue" Campaign for September Pain Awareness, and I am thrilled to be able to do something!

Chronic Pain all too often at times is yet another one of our "invisible illnesses"... many of us don't go out with canes, walkers, or limping... BUT that does NOT mean that we are NOT in terrible pain... for many of us it waxes and wanes, moment to moment, day to day... we never know when and where it may hit us...

Here is the "30 Day Challenge" Information that gives you some ideas about what you can do to help....

US Pain Foundation and Some Fun Ways to Spread the Word!

Day 1:

Change your profile picture on Facebook, Tumblr,

Twitter, etc. to a logo designed to raise awareness. The

logo can be found on the US Pain Foundation webpage:

http://www.uspainfoundation.org

™

Day 2:

Wear White and Blue! Show your support for US Pain

Foundation by wearing our colors in various ways! If

you’re feeling colorful, you can wear a tie dye shirt to

represent that there are many types of pain. This is much

like the concept of our Pain Warrior Bracelets, which we

encourage you to wear on a daily basis!

™

Day 3:

What would you do if you lived pain free? Write

down a few ideas, activities or career goals. Then,

modify one or several to fit your “new normal”. Set

yourself a goal and share it with us through email, the

Ambassador Website or Facebook!

™

Day 4:

Use social media to explain to family and friends

why you decided to join the U.S. Pain Foundation, or what

you like most about your involvement with the

organization.

™

Day 5:

Submit a letter to the editor explaining the

organization, how many people (over 100 million) live

with pain, etc.

™

Day 6:

Take some pics! Have someone (if possible) take a

picture of how you feel on a good day or bad day. Explain

to your friends and family what this picture represents,

how pain can look different for everyone, and why you

volunteer.

™

Day 7:

Week one is done, so have some fun! Be creative

indoors or out and show your community what US Pain is

all about! Use chalk, paint...whatever you have free, and

proudly display “Pain Warrior” for everyone to see!

Please only decorate on property where you have been

given permission to do so.

™

Day 8:

Circulate! Choose a handful of locations you would

like to visit and during this month, stop by a library,

rehabilitation center or community center to drop off US

Pain brochures. Leave your US Pain Ambassador business

cards too!

™

Day 9:

Sharing time! Try reaching out to one person who’d

benefit by knowing about U.S. Pain Foundation. You can

share how the organization’s helped you and that

information can be found on our website:

www.uspainfoundation.org

™

Day 10:

Rest, relax, rejuvenate, repeat. Make this YOUR

time to find that quiet place or spoil yourself with a

new haircut, massage (confirm it is safe to do so with

your physician) or nap!

™

Day 11:

Attend a support group meeting, pain awareness or

community event! The gathering doesn’t have to fall on

this day, but plan ahead and support community efforts

taking place in your area. This provides great networking

opportunities!

™

Day 12:

Say ‘Thank you’. Those two words can mean so much

and doesn’t take a lot of effort to show someone that you

appreciate them. Choose a caregiver, friend, family

member, doctor, nurse—anyone and everyone who has helped

you.

™

Day 13:

Did your state proclamation get approved in

September? If so, brag about the proactive efforts of

your state via social media. We’re showcasing all of the

approved proclamations here:

http://uspainfoundation.org/september-pain-awareness-

month.html

You can share this link with others as part of

today’s activity!

™

Day 14:

Put down the pen and share the US Pain Foundation

Facebook page on your social media platform of choice!

Let others know that this resource is made available by

sharing this link:

https://www.facebook.com/U.S.PainFoundation

™

Day 15:

You’re halfway through the challenge, but there’s

several more days and ways to raise awareness! Create

your own activity or task for today that you feel will

reach our goal of advocating, being proactive and

motivating others!

™

Day 16:

Try a form of complimentary therapy! There’s a

list of options on our website. As an organization we

support all therapies available and to not endorse just

one type of treatment. Please consult your primary

physician or pain management doctor before deciding to

participate in one of the complimentary therapy options.

™

Day 17:

Encourage a friend. Sometimes it isn’t easy to

find inspiration on days when a person is down on his or

her luck. This day can serve as an opportunity to connect

with someone who is also in pain, or just a friend in

need.

Day 18:

Write a list of things you like about yourself!

It’s okay to have a little fun with this activity and be

honest with yourself. This can include accomplishments

you are proud of achieving, despite your pain.

™

Day 19:

Paint or draw a picture depicting pain. Once

completed, share it with us by taking a photograph and

emailing it to fellow Ambassadors and/or on social media.

We may also ask for them to be sent to our main office

for display!

™

Day 20:

Rest, relax, rejuvenate, repeat. No really, we

mean it! Go ahead and take another personal day for YOU!

™

Day 21:

Try for one day being aware of how many times you

want to feel or say something negative. Attempt to catch

yourself today and instead, put a positive spin on your

thoughts. Remember the good days that you’ve had and will

continue to have!

™

Day 22:

Create your own challenge! Be creative and

innovative today and let your individuality shine!

™

Day 23:

Invite a new friend to join US Pain as a

volunteer, member or Ambassador.

™

Day 24:

Educate yourself by learning about a pain

condition you do not have. We become a better support

system for the pain community just by knowing a little

more about those conditions, syndromes, injuries and

diseases that exist.

™

Day 25:

Log onto the Ambassador website and blog about

your 30 Day Challenge Journey! Writing down your thoughts

in general is a therapeutic tool. Members and volunteers,

share your challenge on the US Pain Facebook page!

™

Day 26:

Visit a nursing home, hospital or similar venue,

speaking with those coping with pain. This type of

supportive outreach is sometimes lacking and is such an

easy way to let other pain warriors know that they’re not

alone.

™

Day 27:

Reach out to one another. Introduce yourself to

other volunteers within your state or across the country!

We’re a close-knit group of understanding, compassionate

individuals, sharing the same goals. Send emails, chat

online, meet up somewhere or make a quick phone call to

fellow pain warriors! You may find a forever friend or

pen pal!

™

Day 28:

Post it! Write your favorite quote or personal

saying you have created and make it your daily mantra.

Keep repeating the saying today and post it on

Day 29:

Schedule an appointment to sit down with

administrators at a local elementary, middle or high

school. Request the time to speak with them about

visiting a classroom. The purpose would be to discuss

what it’s like to live with pain, that children shouldn’t

be afraid to visit a doctor’s office, discuss the US Pain

Foundation, and distribute our tie dye Pain Warrior

bracelets as a thank you for feeling welcome in their

classroom. We recognize that in order to eliminate the

stigma of what pain is and what it looks like, we should

start by educating our younger generations and decrease

discrimination within the school system where there are

often children who live with pain, are wheel-chair

dependent, have a handicap or know someone who is

dependent on others.

™

Day 30:

Self-reflect on the month. Look at all you have

accomplished inside of 30 days! Many of these activities

can be implemented and executed throughout the year as a

means to spread awareness. These small steps are making a

huge difference in the lives of those who once felt

alone, but are now aware that there is an organization

emphasizing fair policies for patients, reinforcing

proper pain treatment and providing support systems and

resources for the community at large. We thank you for

being a part of this positive change, and a part of the

U.S. Pain Foundation Ambassador family!

National Pain Awareness Month in September and more from the US Pain Foundation Summit and Paul Gileno - Chronic Pain Takes so Much from Patients, Caretakers, Family & Friends Lives

Opening remarks are underway at the Advocacy y Summit with President & Founder Paul Gileno providing attendees... http://fb.me/4lxnrkEX0 

Chronic Pain can take over your life, the life of family, friends, caretakers, and even cause hardships with relationships. It is truly a "home wrecker" and we have way too many people, especially in places of government that just do not understand the ills of chronic pain.

I am trying to do my part in September to raise Awareness on just how this life altering "disease" can control every move of your life, and how we need to stand up and educate others, including those around us, physicians, the medical profession, government officials, and this nation and world for that matter about the effects of pain when it becomes chronic and out of control.

As a pain patient myself, all too many times, I've been "pointed" at and felt as if I was some kid of criminal because I wanted to stop the pain... it cost me jobs early on in life (I began with chronic migraines at 17 years old)

In fact, even though I had other very severe chronic issues with my health, that finally led me at 43 years old to file for complete disability, the disability judge ruled in my favor for the number one paint of the migraines... I either had to quit a job, or after years on a job, would miss so much work with them, it led to me being dismissed from a job...

I worked from the time I was 16 years old, and yet I suffered year after year with those horrible headaches... 

Ironically, the regular migraines got better about 8 years ago, partially due to my internal pain pump, but then after I was diagnosed with RA and Lupus, I began to have severe "Lupus migraines", that nothing will touch other than strong doses of prednisone... 

Yet, my "chronic pain" as with many others goes far above and beyond migraines. When you deal with autoimmune illnesses, such as Lupus, RA, Sjogren's, and many others, pain is a part of your daily life. Oh, sure, with the right medications, the proper physicians, and all out there available now for pain relief, there are numerous ways to "control" pain. Yet, nothing will take it all away. Nothing will prevent it from sneaking up on you, when it is least expected, and become "intractable" or at the very least put you on the sofa, in the bed, or otherwise blindside you, when you are certainly not ready to deal with it.

When my Lupus and/or RA; along with several other health related issues decide to come calling, sometimes there is not anything that can be a cure... it may curb pain, but at that time, that is what it can do... make it tolerable... and that is very difficult to determine, because pain in itself is a complex illness and is different for everyone. What one person thinks is totally off the charts on the "pain scale" maybe at a 5 or 6 for someone else. 

Each of us have the same chemical makeup when it comes to pain, but depending on the cause, what you are taking, why the pain is coming, whether from some physical ailment, such as a worn out joint, or a migraine, or from several joint problems, muscle spasms, stomach and intestinal pain, "acute" pain from an accident or illness... all have different ways of causing pain, and all have a unique way of developing.... and being treated...

US Pain Foundation September Pain Awareness Month & our Local Mayor signs Proclamation & is allowing me to do the "Beautify in Blue" Campaign for Pain Awareness!

I am totally psyched over our city Mayor signing the Pain Awareness Proclamation for September! Also, they are allowing me to set up the ribbons, signs and so forth for the "Beautify in Blue" campaign by the US Pain Foundation! I am so elated to be able to bring this "home" as far as awareness about chronic pain, and just how much it effects so many people's lives... and so forth. The city has just been very receptive in helping me, so that makes it even better! Here is a pic of the signed Proclamation!

Life with Autoimmune Illnesses, Lupus... back sugery, dealing with chronic pain, US Pain Foundation and September Pain Awareness Month, Proclamation, family and coping

Things here are still really insane... it "seems" that my intestinal tract "maybe" improving... I hate to say that and jinx myself... but yesterday and last night and so far this morning it is much better than a week ago... but I still have Mom and her injections to deal with, I still need to get the chest X-ray.. I hope and pray that is 2nd round of antibiotics will completely rid me of the cellulitis... I found another "lump" on my right thigh a couple of days ago, and I was praying it was not more - but I am on the Rifampin and the other one (can't think of the name of the moment) LOL.. but between lack of sleep for nights and nights... and the heat, and stress, worry... my mind is about null and void anyway... Good news!! I am okay for the City Of Ennis to go ahead with the National Pain Awareness Campaign in September "Beautify in Blue"!!! Our Mayor signed the proclamation, and the man that I needed to speak with about signs, ribbons and so forth told me it was fine to go ahead and put those up for next month!! I am truly thrilled to be able to get "my home community" involved in this... even he said he suffers from migraines... so he totally gets chronic pain... I will keep you informed, make photos and post them etc as I get the stuff and get it up here in town... other than that, I HAVE TO GET WELL so I can have this back surgery... I will more than likely switch Medicare Plans for next year and that probably means I could lose my surgeon, so I have to get it done before the end of the year... all of that has been a nightmare also... to find out that my own HOSPITAL does NOT take the Medicare Advantage Plan, after I was told they did... but it is a huge ordeal and AARP should be ashamed of themselves for even sponsoring Untied Healthcare and what they have pulled on their clients... it is all over the internet how they have really messed so many of us up on our providers... I am still very concerned about Mom and all of the "memory" issues and things I've seen over the past several weeks... although I know from experience, lack of sleep, pain, new medications, stress can all be huge factors in our memories etc - it seems to be over and above all of that... anyway, I am playing catch up after being ill for so long and I am still not at my best (whatever that is anymore ) ;) just wanted to touch base with everyone and let you know I am still "alive" and not really "kicking" at the moment...

Doctors Visits, Sleeping Late of course, thoughts on Autoimmune Illnesses, and why some of us tend to get them and others don't....

Well of course... I am supposed to go to my PCp and Mom has an appt also... this morning, hers at 10:15 and mine at 10:30  I had the alarm set even though I am always up early and of course.... I SLEPT LATER than I wanted to and teh damned alarm did not go off.... LOL... tells me what kind of day it is going to be, thank goodness the appt is local and not but about 10 minutes from here... but I wanted to get some things done before showering and getting dressed... guess those will have to wait until later today or over the weekend... I am feeling either like allergies are acting up OR I am coming down with a "summer cold" or something. I've woke up and even last night going to bed with my head kind of plugged up, or feeling like I couldn't breathe as well through my nose, and I had to get up in the night 2 nights snow and use my nasal spray... and of course then over sleep.... I am in the process of getting our Mayor to sign a "Pain Proclamation" for September Pain Awareness Month and they are have "Beautify in Blue" Theme. If I get the city to approve it, I can put up posters around and tie blue ribbons and so forth in September around as long as it is okay with our Mayor and City Counsel. I really want to do this.... I've posted things about Arthritis and the Arthritis Foundation and I've had some Lupus things I've posted off and on... I even have 3 Proclamations from the Mayor 1 and 2 from the Governor of TX signed for Lupus for 3 prior years. So, it would be nice to get my city involved in the Pain Awareness Month. I know we have MANY chronic pain sufferers, lots of people I am sure with autoimmune illnesses, such as a cousin who has RA, and I hear all the time around town about people either with the illnesses, OR they have family with especially Lupus... in fact I've wondered about the Lupus several times. It seems Ennis has more of a tendency to have "Lupus" patients more than RA, or some of the other autoimmune illnesses. I know a couple of girls  went to school with had MS some years back. So, it would be really interesting to find out more from either a "poll" or study of some sort about "why" we have more of one than the others etc... I have my own thoughts that all of these AI illnesses (and I include FM,CFS and ME) in the list... that are partially "heredity" and then also partially caused by something we either eat, breathe, have in our air, water, food etc... that suddenly "awakens" those illnesses in some, and not in others. Of course I am very much the "laymen" when it comes to this, but over the years of my own plight with the illnesses, all of the blood work, when my symptoms seem to be at their worst, why some meds work and some don't etc... all have led me to believe... kind of like cancer... our immune system could be "wired" from birth to have more of a tendency to suddenly have something in life happen to cause them to act up. From stress, which I know for a fact makes me much worse in flares", to having something very dramatic happen to you in life, a very bad illness, an accident, something that puts so much stress on your mentally and then of course effects you in a physical manner also... and then that happens to cause whatever may have been staying "in check" for many years of your life, suddenly just runs "amuck" in your body. What gets me is that for years I was told due to all of the joint problems, that I had DJD and DDD, degenerative joint and disc disease, and at that time usually that meant of course "arthritis". I can recall questioning my doctors even in my 30's as to why I would have this problem so early in life, and their response was usually "genetic" in nature... my Dad had arthritis for many years I recall. He always wore a "copper wire" around both ankles and complained with his knees more years than I can count, even when I was very young. But, also never was it questioned "why" in his I am sure late 40's had that bad of joint problems, especially his knees. His job and when he was young hoeing, pulling and chopping cotton, to move onto working at that time what was known as Ennis Tag... at 16 years old... and then it went onto become Ennis Business Forms... and that was on a concrete floor, years on a printing press, and then he was in management the last 20 years or more, before retiring. So, the doctors blamed his on "environmental" problems. But, back then, I don't think RA, was even anything the doctors knew enough about or anything about to make a diagnosis. So, even though Dad had "symptoms" back very early, his were considered a part of his lifestyle... he also fought in the Korean War, and contracted a very seriously bad case of Malaria. He was in the hospital 3 months, from what I know. Even the whites of his eyes turned yellow from the Malaria Fever. He never could give blood after that. I think that it remains "dormant" even though you recover from it. So, I wondered if him being so ill with such a bad disease back then, may have had something to do with his later joint problems and arthritis.

I've came to the conclusion that the majority of us, have our own "thoughts" about the why's of these illnesses. Many of us are more "experts" about some of them than our own "experts"...

Even though this sound harsh.... Yes, our doctors are the "specialists"... they go through many years of schooling, hard work, studying, and all to become doctors... and then more years to really specialize.

Yet, when you have never "experienced" a "chronic illness" ... whether pain, autoimmune illnesses, arthritic illnesses, FM, CFS and many more... you just cannot "know" all of the in's and out's of those diseases. When you LIVE, EAT, BREATHE, WAKE, SLEEP them every day of the course of your life, you tend to become an "expert"... by having the problems, be researching very specifically certain symptoms, by reading, by the latest news and developments, by websites that provide tons of good information and so forth... so of course doctors are the "experts as far as "knowledge" in schooling, BUT, they cannot possibly "get" what we feel, see, hear, smell, and LIVE with daily.... thus I cannot fathom in these times physicians are still "NOT HEARING" us truly... they may "half listen" but some of them like my own Orthopedic doctor, will flat "dismiss" me and say I am "not the expert"  again. one of the doctors that DOES NOT like an "educated or informed patient"... so this is my take on things for the time being... when I return from the doctors later today, I will add more onto this.... but please post your thoughts....