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

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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!

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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!

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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.

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Day 5:

Submit a letter to the editor explaining the

organization, how many people (over 100 million) live

with pain, etc.

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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.

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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.

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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!

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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

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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!

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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!

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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.

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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!

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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

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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!

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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.

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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.

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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!

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Day 20:

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

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

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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!

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Day 22:

Create your own challenge! Be creative and

innovative today and let your individuality shine!

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Day 23:

Invite a new friend to join US Pain as a

volunteer, member or Ambassador.

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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.

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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!

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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.

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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!

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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.

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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!

Fed Up, Tired, of Struggling, Hardships, Chronic Illnesses, Tests, Autoimmune illnesses, broken relationships, and feeling "broken"... where and when does all the HORROR end?!

I am just so OVERWHELMED with so many ridiculous "hoops" I am having to "jump" through between doctors, other health facilities, tests, labs, insurance, pharmacies, good Lord, I cannot even think of a word to describe the freaking NIGHTMARE I've been having to put up with over these past weeks. May=ny of you already knew about the "lumP on my left upper front thigh, and the 3 WEEKS (well in all 21 DAYS) of not just ONE, but TWO extremely powerful antibiotics... Bactrim and then Rifampin which is used for a "cocktail" of meds for people with TB (Tuberculosis).... in fact my pharmacy did not even have it, and had to order it for me. I was on those two at the same time, 3 different times, 7 days each. The "lump" was about the size of a silver dollar, maybe a bit larger, and had already been on my thigh about 10 days before I began to feel like I needed to have it looked at. My PCP of course thought it was cellulitis. It never "erupted" on top of the skin, like some of these things do. It continued to remain "under the skin" but in a large lump, that at first was sort of soft. At first the antibiotics seemed to "shrink" it down. So, I was relieved. I am also facing LUMBAR/SACRAL one level back surgery, which NEEDS to be done BEFORE the end of the year. I am so FED UP WITH AARP UNITED HEALTH CARE - MEDICARE ADVANTAGE PLAN - SECURE HORIZONS!!! that I could ring all of their necks. They "arbitrarily" after me researching them for MONTHS, with online searches, phone calls not just to them, but also to MY own doctors, looking up my meds and so forth, ALL seemed to TAKE this insurance. Well, I still am not sure how they got by with it, but somehow AFTER January 1st when you cannot ANY longer change until the following year... they "got rid" of many of the providers... many of them DOCTORS that are right here in my county, which is why they should COVER THEM! They DO NOT EVEN cover ANY HOSPITAL other than me having to go 40 miles plus up to the Dallas area. I had Humana for several years, and had some problems with them, SO I decided that this stupid plan which is ENDORSED BY AARP - would be better - NOT!!!! They don't even know when you CALL them if "a doctor" is on the plan or not. In fact in my search for a General SURGEON to remove this lump ASAP, I called two of them, and even their own offices were NOT SURE whether they "were or were not" "in netowrk" providers!! HOw the HELL they can get by with this is beyond ME... but you can bet, Humana "was" and appears to still be FAR BETTER than UNITED HEALTH CARE, AND I INTEND ON TELLING AARP, and United Health OFF, as I get rid of them for 2016! I have had to PAY out of MY OWN POCKET to KEEP my Rheumatologist! I NEED a damned Chest Xray, due to the stupid blood work for the TB test not being done in time. thus the test came back "indecisive", thus before I CAN BE PUT ON XELJANZ I HAVE TO HAVE THE X-RAY AND NO ONE here locally can do it under the insurance! So, I again have to PAY OUT OF POCKET FOR A CHEST XRAY - Our Urgent Care Center does not even take the insurance... talk about BAD! So, I did find out they would do the Xray for me for 80.00! Which is still high, but it would be more at our hospital etc... so I go over there yesterday (I should have had this done weeks ago) but due to the cellulitis, the issues with my own back, doctor visits, and so forth, then my Mom's come to find out not a hip, but also a lumbar spine problem, then I got sick from the antibiotics and turned around and then got a stomach virus... and then my Mom's sister passed away after battling stomach cancer for several years... SO yesterday after my echocardiogram - I went across town to Urgent Care. THEy DID HAVE the "order" for that X-ray, because I had called them a few weeks back to make sure... but the woman there who was NOT HELPFUL what so ever 0 swore the "order" from my Rheumy was NOT there... SO I go and call them, give the the "fax number" she gave me, and it was WRONG! She told me the number for the phone and not the fax, then blamed me!! By now I was LIVID, tired, already upset enough, hurting, between everything else, and now I have been in fear to take my Orencia, even though I have a brand new batch of it, due to the cellulitis I feared taking it! So, even before that, my RA has grown much WORSE especially in both hands. My knuckles stay swollen and you can see the swelling even between my fingers on my hands... it first was my right hand, but now BOTH of them are terribly bad. My grip is getting so weak, I can't open things, and I am just having hell with both hands... SO they finally get the right FAX Number, and they fax the order over, BUT IT WAS SUPPOSED TO BE FOR ONE VIEW, and the order was for TWO! So, that meant I had to pay 160.00!!! rather than 80! Well, I knew since this was strictly to rule the blood work was "wrong"... so 1 view was enough, BUT they had to have the Order from the doctor stating 1 view BEFORE THEY COULD do the Xray! SO, I finally GAVE UP, came home, sent my RHEUMY AN EMAIL telling them my dilemma and they were supposed to resend the order for 1 view!!! BUT by then, I had gone to the store, the fire ants are now eating us alive after the bit of rain, so I needed poison for them, and needed to see my Mom... so I decided to wait and tomorrow I will go back for the Chest Xray! Of course that is ONLY a portion of this entire ORDEAL.. My Mom I take next Tuesday for the EPI's the steroid injections for her back, and that is in Dallas. FINALLY, after hours online and on the phone I FOUND A SURGEON IN THE TOWN OVER about 15 miles or less away that WILL TAKE MY INSURANCE AND IF I NEED THE PROCEDURE DONE AS AN OUTPATIENT, I found out at least our Outpatient Surgery Center here in Town DOES take my insurance and he does do procedures there... but HE CAN'T SEE ME UNTIL A WEEK FROM FRIDAY! Now this lump has turned into a much harder lump, plus it now is tender to touch. It has also grown "taller" and is much more noticeable when you look down at my leg. Not only that, but the "2nd" one, a much smaller one that came up about 3 weeks ago or so, but on my right upper thigh, almost straight across from the 1st one "seems" to be getting a bit larger. It still is only about the size of a dime, but I can tell, maybe it is just me, but it is almost feeling as if it is growing "outward" where it can be seen more. I had bumped the large one accidentally on a chair I think on Monday. It hurt like hell, and now I am not sure if it is because I hit it, OR what is happening, but now for the 1st time it is "red" at the surface of my skin, almost as if it may try to come outward, rather than stay underneath the skin as it has now for all this time. I've been keeping a close eye on it, and been making sure I watch for more signs of infection, like it feeling like it is "hot" to the touch, or that I am not having signs of running a fever... I guess that is why I am a bit upset that I have to wait until a week from Friday to see the surgeon... if this thing does become infected, and does try and "open up" on top of the skin, with my already compromised immune system issues, that would not be a good thing. That was the one good thing when I was on the antibiotics, it nor I showed any outward signs of having an infection, such as fever, chills, and so forth. But, earlier, I had been outside this morning, and even cut a few limbs off one of my trees, then did some arranging of things in my regular freezer, and moved some stuff to my deep freeze.. I had bought some "extra" stuff for the freezer and needed to clean out stuff that was too old, and then put some of this new food into the deep freeze... and I did. I even had some chicken pieces that I decided I really needed to cook, since they had been in the deep freezer for a while. So, I took all of them, put those in my slow cooker, and decided to make some chicken pulled bar-be-que. Then I can freeze that, and have it later... especially when the fall and winter come... and suddenly as I did that, I came down with a horrible headache, and I had one last night out of the blue, when I was going to sit down and watch a movie. I had to finally lie down, after taking some meds, and it went away in the night. But, suddenly it hit me again, and I began to feel nauseated which sometimes I do, especially if I have a bad headache... before I could even take some meds, and try to sit down for a bit on the sofa, I had to run to the bathroom and was sick to my stomach - and what made that really odd, for one, I had not really had much of anything to eat, even last night. I ate some fresh fruit I had cut up, and was not really hungry, so I later had a bit of sugar free Sherbert... so I just can't believe I got that sick, and I really did not have that much in my stomach... but I did, and of course it scares the HELL out of me to throw up.. I am always terrified to do so and will do just about anything to try and not... but even as I tried to sit on the sofa, it was too late, and I wound up being sick after all.... so I went took medications for my headache and some Promethizine to hopefully get my stomach settled down... and it did for now... I was writing this and had some of it done, then I got a bit upset over EVERYTHING going on, and I have not even said that there are several other things I need to either help my Mom with OR I need to get done, this week hopefully, so being BACK on the SOFA having a sick stomach and a headache is NOT what I needed this morning... The state has changed the laws about how we now "inspect and register" our vehicles... it used to be they were separate... now since May 2015, they have changed to you have to have your inspection, it has to be "current" and in the computer system, and then they will register your vehicle... well so happens mine is good till next May or so... but Mom's both inspection & registration are due... so I can't "register" her car, until I take it to be inspected... which is fine, but it is now a bit more red tape even though it is supposed to be "easier"... not really for us the driver's though, we still have to have both, but now we will have 1 sticker, rather than 2, one for each... anyway, I need to do that this week... plus I needed to go pick up a few things at Wally World, the Fire Ants have now just about taken over my yard back and front dammit... I had them completely gone... but after that rain we had last week, and I have not put the complete broadcast killer out since early Spring... as I do, but I did it so early, now it's not doing the job, so for now I am having to just put out the killer on the individuals beds. But, dammit, yesterday evening, (I ran out of the fire ant killer also) but bought some, and went around to my back yard, and there under one of my trees over my where the neighbors took down a building and they are building a new "monstrousity" for a stupid garage, which is bigger than my house... anyway, a HUGE bed was completely surrounding this tree... I bet it was 15 feet around, and no telling HOW DEEP... I know we had one by the same neighbors lawn (HE NEVER FREAKING does anything to get rid of them on his side) up at the front, and it was about 4 feet or more deep when I finally put out the poison for them, killed it off mostly, but then took a hoe and dug down and there is still almost an indention there where the bed of Fire Ants had been.... Plus he always mowed my lawn, when Jim would not... well hell since Jim left all of a sudden they barely even speak to me, and now he almost ignores me... and my front lawn needs mowing, but he also pulled the rope and broke it on my mower, so I have to fix it or get it fixed... and I paid him... anyway, I may have to pay someone else... because when the lawn gets a big tall, those damned fire ants build those nests within a night's time and "hide" in the taller grass. So, keeping it mowed down also helps to see the beds and also keep them from building them so much.... anyway, then I have to go BACK and hopefully get that damned chest x-ray done also tomorrow.... and Mom's Birthday is Friday... she will be 80 years old... and I so wanted to take her to the Casino at least for the day, and maybe spend one night... we have free rooms, and free buffet's... Anyway, I am just FED UP with everything seeming to go wrong, no matter how hard I try... nothing ever seems to come "easy" for me.... I have struggled in one way or the other throughout my entire life... either due to health, or "bad" relationships. or "crappy jealous bosses".... it just seems nothing is NOT complicated in my life... I keep trying to "have faith" and have hope... but here I am 55 years old and I feel like I have FAILED everything and everyone in my life... nothing I do ever seems good enough, and I am just freaking sick and tired of it all... every day there is a struggle, with health, doctors, meds, pharmacies, insurance, tests, no matter what, it just refuses to be "easy".... I feel cursed, or as if I've done something horrible and I feel punished and don't even know why..... Chronic Pain, Chronic Illnesses... they are horrible enough... but when you feel every damned thing in life seems to be like hellish and half an acre to get anything accomplished... and there are those the wonder why some people "give up"!!! Hell everyone has a breaking point, a point to where they cannot take anymore... and if you had to walk in my shoes for a week... you would know why, I am so fed up.....



After reading the "comment" made by a woman I knew nothing about, and thinking about it, I decided to "delete" her comment. Honestly, it had NOTHING to do with my post, she has NO profile or anything on "Google" to allow me to know a thing about her. I did answer her comment and I am going to leave up my answer under comments for now. I think if she would have left out about her "contact" information I may have allowed the post... but "spell casting" is really nothing to discuss on my blog... other than the past very early "history" I posted about my very limited knowledge on that type of subject, I felt it was not an appropriate response for my blog. I hope I don't offend anyone for removing it, I just felt it did not belong here....

September 2015 "National Pain Awareness Month" right around the corner and "Beautify in Blue Campaign" by the US Pain Foundation

I will go ahead and mention that I got our Mayor here in my Hometown to sign a "Proclamation" for September 2015 being National Pain Awareness Month! The US Pain Foundation is "hosting" a "Beautify in Blue" Campaign to bring awareness into our towns and cities. Ennis has allowed me to be a part of this event for September. I am not sure all of what my package will be from the Foundation, but I will have signs, posters, ribbons and so forth to put up around town. So, I am thrilled to be able to do something and give our town a look at just how chronic pain can "control" your life, and just how many right here in town suffer from all types of illnesses that also have chronic pain issues in tandem. Even one of the gentleman that does okay these types of projects told me he suffers from Migraines. It is amazing when you speak out about some of the chronic illnesses and pain here in your own "backyard" so to speak, how many others are also suffering too. I have two cousins, both suffering from RA, even before I was diagnosed. In fact my 1st cousin Mike, who just lost his Mom to stomach cancer (my Mom's sister and my Aunt of course) just had hip replacement, this is his 2nd replacement - (two weeks ago), he had his other hip done, about the time I was having one of my knee replacements done probably in 2008 or so. I have had "so many" and in 2007. I believe I went through about 7 surgeries or more on joints, so the dates sometimes become a blur. But, I know others that I run into in the market of Wally World and so on, that also have issues, some of them like my neighbors across the street, the Mom, and both sisters all have diabetes. I believe their Dad also suffered from it. In fact the youngest sister, and she was maybe in her 40's passed away about a year ago after fighting diabetes. She had already been on dialysis. The Mom has also been on dialysis now for several years. She "shattered" a knee not too long ago and spent weeks in the hospital and in rehab, but due to her illness, and the dialysis and age, they would not do surgery on the knee. I don't think the doctors feel she could make it through the surgery. She is sometimes so weak, they have a difficult time just getting her to dialysis. It is just sad to see what the entire family is enduring. The son, is just an incredible man. I don't think he has been "plagued" with diabetes yet. But, he also has two strikes against him on both sides of the family. You don't see it as much in men, especially the type they have, but with the family history, he certainly could succumb to it.

After all of the advocacy I do for Autoimmune Illnesses, Lupus, RA, Sjogren's, and also Arthritis the AI kind, as well as osteoarthritis, along with Cancer and Heart Disease, sometimes the issues of Chronic Pain kind of take a "back seat" in my activist roles. 

So, since Chronic Pain, which of course I know all too well, from my own personal and up close experience with it now for many years, well before the Autoimmune Issues were diagnosed, I suffered from such horrific Migraines that I was sick with them sometimes several times a month, for many years throughout the time I was about 17 years old, until about the age of 45 or so. 

They became so bad at times, that I had to resign jobs, that I had been in for years at a time. It became such a burden, yet back then there were not many answers as far as migraines went. They had very few medications, most of them of course narcotic pain medication, and even back then, the doctors were so leery about giving them. But, if I did not have my prescriptions, it never failed I wound up in the Emergency Room so many times, and even that for one got OLD very quickly, and for TWO, of course the ER doctors began to think of course I was after the "drugs" rather than having Migraines so bad. 

So, oddly enough, once the diagnosis of the autoimmune illnesses were made, and I finally found after years and years of suffering by then all types of chronic pain issues, an awesome Pain Management doctor, who has been taking care of me now for at least 8 years maybe more... and he even put in my internal pain pump in 2010. 

My migraines seemed to have calmed down, even before the pain pump. and began to change. I began to have "Lupus Migraines"... and an injection of corticosteroids, along with a step down pack for 7 to 14 days, was the only thing that helped those.


But, my chronic pain became more complicated due to all of the severe joint issues, of which some I have had surgery and others still bother me with chronic pain, which is a part of many AI illnesses.

So, I felt compelled to now do some advocacy work in the realms of Chronic Pain.

Thus my reason for helping out with National Pain Awareness Month, and the Beautify in Blue Campaign. I hope to be able to help educate others about Chronic Pain, and just how badly it can also effect your quality of life. 

Daily Life with Autoimmune Illnesses, RA,Lupus,Sjogren's, family, friends, doctors and all in between

It seems I've been almost "stuck" on this subject of living daily visits and such they come along with them.

I have found that at times I get so "technical" on my blog, I forget to just discuss daily life... my family, Mom, my grown kids, my Grand kids, and all of the medications, symptoms, side effects, and ongoing things that many of us face in our daily walk of life.

But, when you have any type of "chronic illness and/or pain" "nothing" is typical. Waking up in the morning and feeling "okay" aat times in itself a challenge. Then you face LOADS of medications that sometimes become an "evil necessary in order for you to have any type of quality of daily living.

Even though with all of the meds, keeping up with doctors visits,trying to take as good of care of yourself as possible... there are still errands, families, bills to pay, food to buy, and "we" as patients all too often find ourselves "overloaded" with some of the daily tasks that before we were chronically ill, would have been a breeze.

I have a "GREAT DEAL" I shall catch you up with tomorrow, Sunday morning. I HOPE that I feel well enough FINALLY that I can go back to church in the morning. Even something such as going to church can have to be 'put on hold" if you are ill, or are in too much pain... nothing is "ever" good to go, for the most part... almost every aspect of life is a challenge or gets challenged by the horrid evil illnesses.....

Here is a bit, from a post of mine on FB.. and I will continue tomorrow.... 

Lots going on and I honestly kind of just "crashed".... After everything from my own bout with whatever the hell this lump is on my upper left thigh, to not feeling well as far as my stomach, and so on... Mom and her lumbar spine issues, and we still have to go for the injections... I postponed them until next week. With her younger sister passing away with cancer, the funeral and all that we have had to do, and then neither of us feeling our best, I felt we needed a few days of down time. I've got to find a surgeon to remove this lump. It did not go away with the antibiotics, and after 3 rounds, my PCP wants it to come and so we can find out exactly what it is... infection, a cyst, or whatever it is... I also developed a couple of "sore spots" around my waistline. One right at my belly button, and another towards the left of my side at my waistline just a bit towards my back. So much has happened and I've been doing so many things around the house in between, it could be I just hit myself or strained myself and did not even realize it. I found one a couple of days ago, and then the other yesterday. We are still all reeling from my Aunt passing away... I am the kind of person who can be "strong" to get everyone else through things, and then after it is kind of settled, then I fall apart... and that is kind of what has happened to me over the past couple of days... I really did not want to do anything, see anyone, write, talk to anyone... all I've wanted to do it sit, be quiet and still, with my two pups, and watch movies... I just have needed this "down time" to gather my thoughts, and try to get a list of the "what needs ASAP" to be done in the next couple of months... Mom's lumbar stuff, my lump removed and that chest Xray - honestly, I feared taking my Orencia when this cellulitis showed up. Well, I was already having a new swelling and much more pain and stiffness in my hands and fingers... and it is much worse now. I am supposed to get on the Xeljanz, but I need the chest X-ray first, and there has just not been a "good time" for me to run and get it honestly. Besides if this is cellulitis, I don't want to "compromise" my immune system anymore, and we now have a "POSITIVE West Nile Virus in mosquito's here" actually found only about three blocks away from my home!!! So, that is another frightening situation. Anyway, I also have to get well so I can have my back surgery, which really needs to be done before the first of the year... and we will "tentatively" be having a "settlement" on the accident from 2014 hopefully in about 7 to 8 weeks, if things go okay... and then there are "other things" once that is over that must be done also... not giving details but some of you already know the score on that... so LOTS on my mind, heart, emotions, and physical realms also... I will"bounce" back... but I have to jump a few hurdles and hope not to trip and fall over them wink emoticon Hugs, Rhia

Becoming an "Active & Proactive Patient" Educating yourself & How it can surely help when you are managing chronic illnesses and/or pain... Lupus,Heart Disease,Cancer,FM,RA,Sjogrens and so many more...

In Other Words "When Patients Manage Doctors".... or at least try to...


This is something I have practiced actively all of my adult life, and especially after have several different "ongoing chronic illnesses", and now we see a different "specialist" it seems for each and every illness, unlike when you "family doctor" did it all, done your physicals,delivered babies, done surgeries etc. I recall with my 1st son being born, my regular Family MD delivered him. Shortly thereafter, he quit delivering babies, along with many of the other family doctors. Due to the rising cost for them to have insurance being doctors, they allowed those area's to be left up to the specialists. When you have for instance my situation, heart issues, so I need a cardiologist, Lupus, RA & several autoimmune illnesses, my Rheumatologist, and my PCP also works with me on the Lupus, I now have a specialist as far as my vision, due to the double vision, I have different surgeons, from a general surgeon, to more than one orthopedic surgeon, because many of them "specialize" in different joints, surgeries and so forth

Then many of us have a Neurologist, a Pain Management specialist, and ENT, a dermatologist, dentist, sometimes even a specialized dentist, and from time to time we may encounter other specialists, such as immunologists, psychologists, oral surgeons, and so many others, as time goes on. I found if I did not take an "active" approach to let each doctor know who the others are, what role they play in my health care, what meds I am on and from which physician, and I keep a list of all of my physicians and why I see them, along with lab work, any type of radiology reports, or scans etc... I have learned that all too often one doctor, may not even send the others the information such as labs, testing, imaging and so forth. So, being involved in your own health issues, taking charge of making sure everyone is put to speed on your other health issues... all of that is so critical for all of us, especially those who deal with chronic illnesses. Now the one problem with that, is SOME physicians, are not as "accepting" when a patient comes in with information, and so forth.

I have found that a couple of my physicians, even though in the end, what I had originally thought and told them was true about a particular health problem of mine, they much prefer an "uneducated patient"... I know that is hard to believe, most of mine are thrilled that I take an active role, and I "know" my own body, and I research medications, treatments and so forth. But, I have a couple of them, especially one in particular that gets almost "mad" when i come in and tell him what I think could be wrong. He has told me before that "I was not the doctor" etc... then he had to apologize a couple of times, because what I had said in the beginning was exactly right! So, he had had to "swallow his pride" and in his own way, make amends for calling me "stupid" basically. Yet my other doctors love it when I can walk in and possibly tell them what I fell maybe going on. It allow them less time in testing etc for things that may NOT be wrong, and to concentrate on what is so we can get right on to "fix" the problem.... Times have dramatically changed in the medical world even over the past 10 years or so... and you truly need to be an "educated patient" whether your physician likes it or not... YOUR health and well-being should be #1 for you!

 

Here is an article from the Wall Street Journal

 

"When Patients Manage Doctors"

http://www.wsj.com/articles/when-patients-manage-doctors-1439228028

Sjogren's and Just How We Lack Professionals in the Medical Field that truly Understand all of what Sjogren's can do....

Such an important thing - there is certainly NOT enough education, even with the medical professionals when it comes to Sjogren's. I in fact even after trying everything in my power to fight the autoimmune illness, lost ALL of my teeth to Sjogren's. It was a very hard ordeal to go through and even today, it remains something I feel "odd" about,although my dentures are very pretty. But, each and every one of my teeth were "eaten" from the inside out, and no signs of Sjogrens appeared to be causing issues, until suddenly I had 3 or 4 teeth completely break off at the gum line. I went in to see my dentist, who actually sent me to another dentist due to my own having also issues with horrible arthritis that is not allowing him to do nearly as much dental work. He had been a dentist here locally for gosh 30 plus I am sure... anyway, I was given a "full round" scan... and inside just about every tooth, you could see that basically all I had was a "shell" left... thus after over a year of pulling them all, and allowing all of that to heal, along with a couple of dry sockets, then one of the tiny cartilage bones between my maxillary sinus passage was  pulled and thus a tiny hole that they call a "communication" happened. This I had to have that "repaired" two times, then allow it to completely heal over before I had the final teeth removed, and the dentures put in place. After that, I had to wait another almost 3 months for the bone and all to heal. Then I had the "mini implants" put on the bottom dentures to hold them in place... besides all of the time... the COST is ASTRONOMICAL!!! And even though it was caused by a "medical illness" I could never get a dime out of my insurance for any of it... just insanity... and at the very LEAST that type of thing is in the ballpark range of $12,000.00 and usually much more depending on which dentist and what your complications and so forth could be...

Here is an article that gives some answers to questions about Sjogren's...

http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp?WT.mc_id=social_niamstwitter

Corticosteroids and Severe Asthma.. Clinical Trial by Cure click

http://curec.lk/1MAcSXQ

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

Ongoing Lupus, RA, trying to cope with Loss of my Aunt, and all that is so complex when you are fighting a chronic illness/pain issue, dealing with stress, surgeries, and grief

Life can be so awesome one moment, and tragic the next. My Aunt Geri, Moms last living sibling, her younger sister passed away yesterday afternoon after battling a rare form of stomach/intestinal cancer now for a long while. I believe it has been at least 3 years, if I am remembering correctly. She went through lots of chemo therapy, but we knew for one it was not operable, and two the doctors had already said that it was terminal. Yet, for the Grace of God, she lived to see her first Great Grand daughter born, and then some. She lives up in Mesquite, so we don't have any details at the moment. Even though her family, along with my Mom and I knew it was coming, you are never really prepared for something like this. Especially with Mom and her lower back issues, and all we have been through and are still dealing with, plus my own issues with my back, needing surgery, then things getting complicated with me contracting cellulitis, no 3 weeks of antibiotics later and the lump remains on my thigh under the skin. When I saw the doctor Friday, he said if this last round of antibiotics does not show signs of going away this, then I will need to see a surgeon, have the lump removed, and then they can determine exactly what it is. It has now gone from being about the size of a silver dollar, kind of a bit hard, but never feverish, red, and nothing ever burst through the skin, like you would assume cellulitis would. That is kind of the reason why he and myself are baffled as to why it remains. It has now turned into being about the size of a quarter but very hard, sore to the touch, plus I developed another lump on my right leg, that is almost in that same spot, just on top of my right thigh, and almost exactly across from the other one. It is not nearly as large, about the size of a pencil eraser, but sore to the touch, and like the other one pretty hard, and does not move around under the skin. At the very first, before I even knew what it was, it was a bit softer, and it kind of moved around underneath the skin when I would try to check out how large it was. Then of course, I had ran out of Orencia - now I guess it has been about 4 to 5 weeks ago. I had issues getting the insurance to get off their butts.. I needed a new script from the doctor, which they received, so I thought they were going to fill it and send the meds to me as usual. Well, after going another week, no call and no medication, I called them. I found out yes, they had the new script, and even though i had already asked for it to be refilled before they got the new one, they did not fill it. Instead they were waiting on me to call back and ask for it to be shipped. In the meantime the lump formed, all of the other stuff came up with both Mom and myself, so I have not had any Orencia in weeks. I feared my last couple of injections may have been contaminated somehow and caused the cellulitis. I am supposed to be on Xeljanz anyway, did the blood work and labs, then the TB lab test came back indecisive, thus I still have not been able to have the chest X ray ... I was hoping to do that last week, then I came down with the stomach bug, and I am still not completely over something with my stomach. I am still somewhat nauseated, which I contribute to the heat, already being sick, a headache, all of the stress about my Mom, my own things such as the back surgery, and so forth. So, now my fingers on both hands, and in between my fingers are swollen, my knuckles really don't want to work correctly and I am having hell with the RA in both hands and wrists. I have always had some issues with them, but more in both thumbs. I have not been able to get the swelling down, and just trying to open a bottle of coke or anything is so painful, plus my grip is really bad right now... and then my darned keyboard that I love... it is solar, seems to be going out on me, thus this one sucks and does not even allow me to do a hyphen or quotation mark, and It is really irking me to no end...PLEASE continue to keep my Mom, and the family in your thoughts and prayers... as I had posted before, this is Moms last sibling, she has lost both parents, a brother, a sister in law... and most of the family on both my Grandfather and Grandmothers side.. of course we lost Dad in 2005... and am sure that brings up things such as that for Mom anyway... I appreciate each of you... I am thinking about trying to get ready for church. I missed this past two weeks because of being so sick and was going to try and go this morning... but I am still dealing with a bit of stomach issues, and with all going on, I HAVE to go and have my pain pump refilled tomorrow, I have no choice. We waited this time until THE DAY my PTM shows the refill date to be. For some reason it almost falls every time where I have to have it filled too early, for one reason or the other... so it worked out to be on the day this time.... more later...

I appreciate your prayers, and yes mine are with you also... this is just proving to be "another one of those tough years".... I had so hoped that 2015, would bring more Light, Hope and Positive things to our lives. Yet, once again so many of us are trying to cope with all types of chronic illnesses, pain, mental and emotional pain also, the loss of loved ones, and this entire nation in general... I can barely stand to watch or look at the news anymore. It is almost too depressing to see just how horrid people can be. From harming their own family, friends, to those who just do NOT care about humanity... the greed, corruption, the back biting, back stabbing... those that get rich off of our own misfortunes, from lack of care from insurance companies, to the extremely ridiculous prices of medications, even generics now are soaring out of the roof... and people have to almost feel as of they always have to look over their shoulder, whether in a huge city, or a small town... so many as I said above that have no remorse, or regard for human life. Even all of the "election" stuff... it just almost makes me physically sick to my stomach at the thought of just about anyone running for President of our nation next year and anyone of those possibly winning... we are already in a terrible condition, not just nationally, but internationally... countries going bankrupt... people not able to find jobs to support their families... and the amount of ever growing medical issues... our water, air, soil... all polluted with Lord knows what... or whether you will walk out of your local market, or church, or movie theater and be taken down by some "home grown terrorist"... I despise even the sound of that... hard for me to fathom any human especially in this great nation being "home grown to terrorize, and kill others... the insanity grows daily.... we have the weight of our own issues on our shoulders, along with the weight of this entire nation and world, as far as the safety, security, and welfare of all of us.. again thank you all for your continued thoughts and prayers... my Mom and I, along with my kids and family appreciate each of you..