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

 

IFAA - Register to Walk! Physically or Virtuallly!! You Can Join in!

Who out there lives in or near (or will be in) NYC on September 20th, 2015?

There is a great event that day hosted by American Autoimmune Related Diseases Association (AARDA) to raise awareness about autoimmune disease. International Foundation for Autoimmune Arthritis, official hosts and event coordinators of World Autoimmune Arthritis Day, is attending to support the event and to raise awareness about a much needed AARDA program "ARNet" (Autoimmune Registry Network).

If you will be in NYC on September 20th please sign up to join the IFAA Buttahflies and meet IFAA Executive Assistant, Kerry Wong and other IFAA Representatives. Sign up by yourself or with family and friends but sign up if you care about autoimmune arthritis awareness and have a fun day with IFAA and AARDA!

http://www.ifautoimmunearthritis.org/upcoming-events.html

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!!!

Updates on my "Lumps" cellulitis, Surgeon, Removing the Lumps, RA, Lupus, Xeljanz, Mom' injections - my RA giving me mortal heck with my fingers, hands, wrists... & more...

A quick note - I am BACK on BOTH Rifampin and Bactrum now for the FOURTH time! I did FIND a Surgeon Finally that takes my insurance! But, he could not get me in until a week from yesterday, so next Friday! In the meantime, the 1st LUMP began to show "outer" signs of "infection I thought. It was NEVER red or all that sore through the whole ordeal. But, last week about Monday, I began to notice not is it only reddened on the top of the skin, it is also, seemingly "puffy" and sore to the touch. The "smaller lump" is now also a bit larger, but also sore as heck to the touch. In fact just walking sometimes makes them feel tender and sore. So, I called my PCP yesterday and he put me on another round of antibiotics until i can get into the surgeon.

ALSO, some GOOD NEWS FOR A CHANGE! My ECHOCARDIOGRAM came back with a "small bit better as far as my heart function from the last one" which I've not had one since 2011... and I was scared that it might be a bit worse, so hopefully that is good news... but you also hear all the time of people having their heart checked out, having the echocardiograms, ad all seemingly well... then a day or so later, they have a heart attack... so I am trying to stay within the "positive" aspects... also I finally got the CHEST X-RAY!!! I thought that mess would NEVER get straightened out...but it is done, and the report should be at my Rheumy's office early next week. SO, my HOPES are that we go ahead with the Xeljanz BUT I don't think they will put me on it, until we know for sure what these lumps are... if infection, then NO until it is completely gone... and hopefully - due to my RA, being more severe than ever, I am losing a great deal of grip, fingers are so stiff, and visible swelling in my hands and some in my wrists and ankles... along with pain, that had not been this bad... but I have not taken any Orencia now in 5 weeks... still taking everything else... but I fear the Orencia also due to not knowing what these lumps are. Also, my MOM celebrated her 80TH!!!!! Birthday yesterday!!! But, she is having heck with her stomach... we did have a "bug" a few weeks ago... but hers seems to be something else... so we did not even get to go out and eat, and I so wanted to take her for at least the day to celebrate... but she is just not up to it..... Okay more later.... ;)

RA, Autoimmune Illnesses, Osteoarthritis, Tips for those with the diseases and/or signs and symptoms to watch for...

Since this seems to be EXACTLY what I am personally going through, I wanted to post this article! Never, ever would I have ever imagines, I would have cellulitis! What is MOST TERRIFYING IS THAT NOW I have TWO lumps one on EACH Upper Front Thigh and they are almost exactly where I gave myself THE LAST TWO INJECTIONS OF ORENCIA!!!! We are always "reminded" and educated about the risks of these medications, yet some of them more rare than others.... just a "heads up" for all!

Here is the story (information) from "The Lancet"  -

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2814%2961704-9/abstract


More information for those with RA - 5 Illnesses to keep in mind

http://www.inspirearthritiscare.org.uk/features/5-health-risks-that-you-need-to-know-about

Signs and Symptoms of RA


http://www.healthline.com/health-slideshow/early-signs-rheumatoid-arthritis



What is "Autoimmune Arthritis"?

http://www.healthline.com/health-slideshow/what-is-autoimmune-arthritis

Chest Xrays, Cellulitis, RA, Swollen Joints, Fingers, Hands, Unable to take my RA meds, Lawns, Neighbors, and Dealing with all of the daily stuff of Life

Well once again we face another Friday! This week has been anything BUT GOOD... in about 4 billion ways, I thought I may just lose my mind, or the tiny bit of it I thought I had left.... FINALLY and who knows for sure but Urgent Care called yesterday afternoon and after over 2 WEEKS of back and forth from them to the Rheumy, I think they have the correct Order for the Chest Xray!!!! Sometimes miracles "can happen"... although lately NOT for me! I believe I mentioned I DID FINALLY FIND a Surgeon who is thankfully just over in Waxahachie to probably remove this lump on my left thigh. But, what I have NOT told the doctors at all, is that I have this other one that formed several weeks back on my right thigh, in just about the same spot. But, since I am seeing the surgeon a week From today, I felt I would bring it up then. BUT< once again I ran into another issue... now that lump that never really was "red" or what they call "agitated" on the outside, or really was never sore, now in the past few days, had become more red on the outside of the skin and it is extremely sore... and so it the one on my right thigh... not really red but very sore to the touch. Since I still have a week before i see the surgeon I called my PCP this morning and told them to let him know, and that I felt I needed another round of antibiotics until I can get in to see the surgeon. I fear now that the infection could be growing outward, and that is the very last thing I need right now... so I am waiting on a call back to see what they say. I hope he does not want me to come in... there is really nothing more to do, but get back on the antibiotics, and wait to see the surgeon,... and then I have to run over across town and get that chest Xray I hope done today. PLUS I DO have to take Mom's care to be inspected today, since they have made the changes in how we register and inspect our vehicles in TX, as of March 2015.So, we can't get the registration sticker until I get it inspected.... but not a big ordeal, I just have to go get her car, and take it to be inspected... I DID get the "bug granules" finally yesterday and I broadcasted them from front, back and sides all over my lawn. I HOPE that curbs the fire ants, which I have already put stuff on all of the mounds, but this other stuff also gets rid of other ants, fleas and so forth, which I can tell what I put out in the Spring has stopped working... thus I needed to do it again... ONE GOOD NOTE FINALLY... OR I HOPE SO... MY ECHOCARDIOGRAM CAME BACK THAT MY HEART FUNCTION IS "BETTER" A BIT, THAN WHEN I HAD ONE DONE IN 2011!!!!! NOW THAT DID MAKE ME HAPPY! But, as I told Mom, I "hope" the heck it is "mine" and is accurate!!! Knowing my luck, hell it could be read wrong or someone else's - anything is possible with me and my stuff.... nothing is usually ever that easy..... but if so, that means I should be good to go for the lumbar surgery dammit if I ever get RID of this damned whatever is going on with the lumps on both thighs... there is no way, no how they will do surgery on me until I am all clear of that, along with now I will NOT be able to get back on the Orencia or the Xeljanz UNTIL I am all CLEAR of infection!!! WHICH MY RA IS so MUCH worse! Both of my hands, wrists and fingers, I can barely use... I have hell from opening a jar, a lid, or anything, along with I can't carry stuff as well... my hands are just so swollen, even this morning worse than ever... my ankles, my shoulders, neck everything to do with my "joints" seem to be so much worse that ever... and I am extremely concerned... not only am I so stiff and swollen, the pain is bad again in my hands, fingers and wrists... PLUS I GUESS since my neighbor had chosen to all of a sudden ignore my existence... O am going to have to fix my lawn mower (the rope broke that pulls it to crank) fix that, and mow the lawn myself... I am sick and tired of seeing it like this, and I will be damned if I ask him... he has a "bee" in his bonnet over something, I have NO CLUE what the problem is... but my yard looks like hell and I intend on getting it mowed dammit... well I have to get dressed and get going... or I will never get all of this crap done... more later, and happy Friday to All!

Clinial Trial - Cure Click New Study for People with Severe Asthma and on Oral Corticosteroids

New Study for People with Severe Asthma and on Oral Corticosteroids

One of the few treatment options for severe asthma patients who are uncontrolled despite standard treatment is the addition of oral corticosteroids. However, regular intake of these oral corticosteroids can decrease the quality of life for such patients. The purpose of this research study is to see whether the investigational drug can reduce the use of oral corticosteroids in patients with severe asthma.
More about the study:

• The study drug is Benralizumab
• There will be 210 participants in this trial

If you are interested, please find the full study details and eligibility criteria listed here.
Eligibility Criteria:
Participants must:

• be between 18 – 75 years old
• have asthma diagnosed by a doctor at least a year ago
• have been treated with inhaled corticosteroids + LABA for minimum 12 months since today + oral corticosteroids for at least 6 months since today
• have had at least 1 exacerbation (worsening of your asthma that requires medical intervention, emergency room visit, an inpatient hospitalization or a change in medications) in the past year

Participants must not:

• have severe lung disease other than asthma
• have HIV, Hepatitis B or C

Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
Learn why I’m talking about Clinical Trials

 

 

New Study for People with Stage 4 Non-Small Cell Lung Cancer

There is a new clinical study looking for patients with Stage IV non-small cell lung cancer who have already been treated with chemotherapy. The purpose of this study is to compare the new investigational medicine versus the standard-of-care treatment with respect to life expectancy outcomes.
More about the study:
The study drug (LY2835219) is administered by Tablets, Pills, or Capsules.

• At least 193 people have already taken this drug in clinical trials.
• There will be 550 participants in this trial, at 20 sites around the world.

If you are interested, please find the full study details and eligibility criteria listed here.
Eligibility Criteria:
Participants must:

• be at least 18 years old
• have a diagnosis of stage IV non-small cell lung cancer (Stage IV means the cancer has spread to distant tissues or organs)
• have tumors with KRAS mutations, if known
• have already had chemotherapy for this tumor

Participants must not:

• be pregnant or lactating
• have HIV, Hepatitis B or C, or a history of cardiac arrest

Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
Learn why I’m talking about Clinical Trials

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!