Monday, August 31, 2015

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!

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

 Also see this link: 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!!!

Saturday, August 29, 2015

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"  -

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

Signs and Symptoms of RA

What is "Autoimmune Arthritis"?

Friday, August 28, 2015

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

Thursday, August 27, 2015

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:
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
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
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:
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
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
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:
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:
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
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
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!

Wednesday, August 26, 2015

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....

Tuesday, August 25, 2015

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.