Showing posts with label chronic pain/illness. Show all posts
Showing posts with label chronic pain/illness. Show all posts

Wednesday, December 30, 2015

A Happy New year as we Welcome in 2016 - and New Pain pump is now in


WISHING YOU AND YOURS A VERY HAPPY, SAFE, HEALTHY AND PROSPEROUS NEW YEAR! MAY 2016 BRING PEACE, HOPE, FAITH, AND LOVE TO OUR NATION AND TO OUR WORLD!!! MY HOPE IS FOR ALL OF US WHO HAVE SUFFERED THROUGH SO MUCH FROM PAIN AND ILLNESSES, TO LOSS OF LOVED ONES, HOMES, MOTHER'S NATURE'S WRATH AT TIMES, AND MORE... MAY WE FIND A RENEWED PLACE IN OUR LIVES FOR THE COMING YEAR. LET'S PUT 2015 BEHIND AND LOOK FORWARD TO SOMETHING THAT SHALL BE SO MUCH BETTER, FULL AND OVERFLOWING WITH GOODNESS, AND LOVE...


RHIA


p.s. New Pain pump is new... surgery went well... I am hurting like hell today, but I am okay... have a call in to my doctor before he also is out for the holidays to check to see about my medications orally until I see him after the 1st of the year next week, when he will up the meds back closer to what I was used to....

Wednesday, December 9, 2015

Sharing Life, Holidays, Up's, Down's, Reality, and Dealing/Coping with Holidays when You are Chronically Ill/Pain & have a broken heart, along with problems that follow....
















First I share some "Good News" and Happenings lately in my life. After Losing my Pug, Tazzy here about 3 months ago, and she was a Christmas Present 14 years ago, from my "husband", (we are now separated) & Bub's and I, (my Chiweenie, who is 5) were really down and out about the holidays. My "body" really would not allow me to climb into the attic for the big tree and decorations, so I bought a small tree, and put 14 years of Sleigh Bell's, one for every year my husband and I had been together.

Then I and Bub's have been fortunate enough to have a brand new "fur-baby" addition to the family just this week! He is only about 3 months old, and his name is "Peanut". I've officially adopted him, so he is getting used to myself and Bub's, and we are learning to adapt to a new baby in the house! But, I think he is really the best "Christmas" present we could ever have, and I am so grateful he came along at just the right time.

I adopted him from a local non-profit here in my area called "Tales of Hope". It is all volunteers, who take the pups into their "foster care" until they find homes and owners for them. I am happy my Vet suggested I adopt from them, and so far it has been a very peaceful and simple thing to go through. He came and had a "house visit" for 4 or 5 days, to see if he and us were all a good fit, and then just a matter of a bit of paperwork, they take care of his puppy boosters, micro-chipping, and then neutering, in a few months when he is old enough... so we are happy he has joined us.


Here are some photo's I've taken, of them, of myself lately, and me trying to put "me" back together again, after my husband no longer here, and then of course we lost the lawsuit over the 18 wheel tractor trailer that RAN OVER HIM WHILE THE DRIVER WAS ON HIS CELL PHONE WITH HIS BROTHER!

Needless to say, I know I have told some of that story, but was kind of under a "gag" order until after the trial, which was the 1st week in November. You can imagine where that left myself, but much more than that my husband, who suffered MANY terrible injuries, of which left him partially paraplegic, without some of his "memory for things such as current", and harmed his concentration levels a great deal. All of that with the pain and suffering, from having his back basically broken in "two", with 9 fusions down the thoracic spine, and wired together... he has more "broken" ribs, that not, and a concussion, that they did not realize how badly it effected him until months and months after the accident. He is a web developer, designer, and has been for 20 years, and that takes a huge amount of concentration, and the ability to "hold onto" information as far as not only long term, but short term... which all suffered from the accident. So, without any settlement funds, he is basically not able to get health insurance, cannot apply for federal disability because he had worked for himself so many years, and made well below the amount to pay in social security. The job he had before then, he did pay in, but as we know, that has to be within so many "months" before you apply and he of course did not have those "units" before, since it has been years since he paid in from a regular job.


The pain and suffering harmed my own health of course, and he had been somewhat my "caretaker" when I had surgeries, or flares with the Lupus/RA, or was too ill. He did some of the cooking, running errands, going to the market, etc... and after the accident, he could not even walk down two steps at our front porch, much less walk in a store, drive, or do anything that required, bending, lifting, carrying and so forth. So, as any spouse would have done, I "negated" my own issues, as far as health, trying to help him heal, both physically and mentally... all the while I started getting ill with more flares, and just have one crisis after the other with my own health, and mentally of course I felt almost as if I had "lost" myself and him... I feel I was "grieving" over losing my own "health" and then to watch him change, I grieved over losing him and us.


I know in MY HEART AND SOUL.... THOSE PEOPLE on THE OTHER END OF THE LAWSUIT FLAT LIED IN DEPOSITIONS, AND ON THE STAND, I BELIEVE THEY "PAID OFF" THESE TWO SO CALLED WITNESSES, THAT I KNOW COULD NOT HAVE POSSIBLY HAD SITE OF THAT BUSY HIGHWAY COMING INTO DOWNTOWN DALLAS, I-45 THAT DAY! But, I KNOW SOMEONE USED THEIR MONEY AND POWER, AND PEOPLE TO LIE, thus we lost the suit...

BUT, WHAT GOES AROUND COMES AROUND.... IT ALWAYS DOES... AND SOMEDAY, they WILL PAY FOR THEIR OWN WAYS, in some form or fashion... we "never" have to take "revenge" for I've seen it happen too many times... THOSE TYPES OF PEOPLE, are taken care of by their own misdeeds. We must just let it go... and "Let God".... I guess would be the proper saying.... How how, some day the "truth" will come out.... it may not "help" us by then, but when it does, it will effect their lives, and then someday they may understand just how horrible our lives have been, and what they have taken away from a marriage, a family, two people, and all we feel we "lost" within those seconds of that accident....


All right, so now I have that part out.... I am taking one step at a time, one breath, one "breath's space", and one moment, day, week... as they come... There is not much else I can do but either "give up"... or move forward... as the song, "too much time to make up, everywhere we turn, time we have wasted on the way, too much water moving underneath the bridge, let the water come and carry us away"  Crosby, Stills, and Young ...


And I have experienced so many wonderful thing in my life, things I felt I would never be able to do... travel by myself to states and states... move to a wonderful city and stay for 5 years, Seattle, snow ski at Wolf Creek Pass CO, see the beauty of Santa Fe, see a baseball game in Phoenix, make a drive all the way to Nebraska to meet a friend, to have many friends that are "miles away" but close at heart... publish not just one but 2 BOOKS, and working on this 3rd one.... dance, sing, play the drums, write music, play the piano and keyboard, go to college and get my Associate Degree, although NOT in the subject I wanted... run a "retail women's store".......see the ocean in FL, in TX (The gulf), the the Sound in Seattle, take a ferry to Bainbridge Island, see the beaches in CA, Go to Vegas, have many vacations I remember as a child with my parents, experience things I thought I may never.... BUT, STILL, I have so many more I want to do, to see, to experience, and of course go to WASHINGTON dc and "stand upon the White House Steps, and tell Congress how I feel about those in need with Lupus, RA,JRA, Osteoarthritis, and many more chronic health conditions....


My "hopes" are that my life gets back on a "new track", in a very good way beginning January 2016. My hope is that I can get back to my writing, and finish my 3rd book, and have it published. I also hope that I can find the "finances" somehow to get my home "finished"... there are so many "small" things that need to be completed, and without lots of cash, that makes it difficult to do. I really don't need a great deal of materials, and what I need is not all that expensive, but it is the "labor", and finding someone to come and do what "I can't do"... I can paint, sand, (have a new idea about my kitchen,bathroom, and laundry room floors that will cost a lot less)... I need some wall boarding put up in the spare bedroom, and in my laundry room. But, the most expensive thing I truly need is a new roof on my house. This one really is in bad shape, and I am very concerned about the Spring and Summer, and stormy weather... plus my entire outside of the house needs painting, which some of that I can do... it is the higher parts, where I have to be up on a ladder higher than I should be that I will need help with. I am going to try and put new "hog wire" fencing up around my back yard, and most of the posts are there, but I need some help getting a couple of dead trees out of the way, and then probably getting the fencing tight enough, plus this back 1/2 acre or so of land that is mine, truly needs to be completely cleaned up. I have a huge pecan tree that died and most of it is down, but it needs to go... plus some other smaller trees be cut down, and trimmed... then I have a piece of an old bus, that was here, when I bought the house, and it needs to be hauled away. It is old, an eye sore, and someone could probably take it with a trailer, and sell it for the scrap metal... so some things are more just time, others I need a bit of cash, and others are in need of assistance, and then of course the roof, that means about 5,000.00 or so....

So, my hopes are that I can stay well enough, to get at least "some" of these projects accomplished as far as the house, I can finish my book and get it published, can get a surgery out of the way I am in need of, and maybe two.... plus just find "myself" a new light, a new path, and follow my heart... go back to dancing, singing, listening to music, and doing what my "body" allows me to do....

My wishes are that YOU, shall also find your path, your light, and your "love" of what ever that may be, whether of the human heart, of a new job, a new place to live, or just doing some of the things in life we tend to put off.... and we never know if "tomorrow" nor the next breath will be here....

I am putting up some pics, and links of some of my "wishes", and my ow hopes for my life the comes with each step I make forward..... Honestly, I've spent way too many years putting everyone else "1st" in life.... and all of what I want, need, or wish always goes on the very back burner... and there shall be some that are not "happy" with this decision... but I am chronically ill, I have many health issues, and I stay in severe pain most days, and I feel like if I do not put my foot down, and begin taking care of ME... I will regret things later as I get older.....


I hope you find the courage to put "you" first... and put the things in life that are important to you, on the "front burner"....




Tuesday, November 24, 2015

Trying to Live Life In A Moment... And Trying to Find my Way once again alone... to a "new Chaotic abnormal"....


  Once again as the holidays grow near, I find myself struggling for what the true meaning of being Thankful is, what pure love is, and dealing with more heartache than I at times knew possible. I began my Annual Christmas Letter yesterday. I've made it a tradition now for many years to write a letter about life during that year, and share it with the few people, family etc that I send cards to. I always feel it makes even those far away feel "closer" to myself, and family. Yet, I had word this afternoon, a dear friend of mine,
sent me a message, and a spouse of 18 years or so, left. I am not sure of the details, but much like my own situation, not sure of the reasoning behind walking out the door. No truthful explanation, nothing... just walk out and let the door slam... I feel a deep sadness this evening, for my friend, and another friend of mine that also had the same thing happen last year during the holidays. Her husband of 20 plus years, did the same thing, just walked out the door and left... and again, under circumstances of dealing with really severe health problems, and when she needed him the most, he walked out.


When I took my vows in Vegas 10 years ago, and I wrote them myself, I meant every word I said... and for years and years, ever since we had moved into this house and made it "our home" mine, and his he wrote to me, along with our marriage certificate were framed and right here at my desk, plus the bouquet I carried hangs above them. They served as a reminder for me, that I had promised, forever, to grow old together, that we "paralleled one another and then met as one, just like two stars combining and intertwining and I would never allow anything of "life" to break us apart. I almost could say that entire vow, for years... and then, it totally was just "words on paper", "words spoke", mine from the heart I vowed, and I do not give up easily. But, whatever "happened"... I have had to "guess"... was it me, what all did I do to make him walk out the door? We had a few arguments, and both of us would of course in "defense mode" would come out with some terrible and say it to one another. But mine was truly just defending my own self, and not meant in truth. Yet, it was taken that way. But, still, I thought well, it was my surgeries and being chronically ill... not so... I was ALREADY CHRONICALLY ILL AND DEALING WITH CHRONIC PAIN WHEN WE MET! He knew before we moved back to TX, he knew before he proposed... In fact, I had filed for my complete disability about 6 months after we met one another... so "my health issues" although in 2007 through some of 2009 meant lots of surgery... yet, I did not expect to be down for "months" and was usually up and around ASAP... I did not want to be a "burden"...
No different than the accident he was in, March 2014... the 26th day of that month totally changed our lives, in so many, many ways... and even before he came out of the hospital, I told him, we would together find a "new
normal"... and he always talked about us growing old together. and sitting on a porch swing talking and laughing and always being together... Yet, here I sit alone, with Bub's... and he is thousands of miles away, states away... and till yet, I still don't know from him directly WHY? But, I have had to try and put one foot in front of the other, and find another new chaotic abnormal life for me. My Mom really got mad at me, then was in awe that I hung the ceiling fan MYSELF! She knew how badly I was hurting afterward, yet she told me today, she could never be as strong as me, or as intelligent as me, and that as the years pass, I amaze her at all I know, and do, in spite of how badly I hurt every day, and the illnesses try their best to take me down, and I won't let them... I refuse to give into the pain, or Lupus, RA, Sjogren's.. and now I have began to have horrible, terrible headaches again... I fear the migraines maybe back... and they had been gone for years... all but the ones with a Lupus flare... When I told her I put the new "insides" in my kitchen faucet today, she looked at me once again and said, "I would not even know what to do, what I needed or where to get it"... and I just said "Mom, I have lived all my life HAVING TO learn to do things myself.I never had the luxury of getting someone to put up a ceiling fan, or fix my lawnmower, or stop a dripping faucet, or paint the house, and the list goes on and on... change a flat, I just got through charging the battery on her car... and again, she could not believe I knew just what to do.... again, necessity makes you learn to do many things.... Yet, in all of that, I find sadness in the coming weeks. I am trying to get a new fur-kid for Christmas... and the woman that needs to come by for a house visit, will come next Monday...so I hope and pray that everything she sees is fine, and that Bub's gets along with a pup she is bringing... he always got along with Tazzer's, and with other pups at the Vet, etc... so I think he will be thrilled, I hope, and not jealous... He has became extremely protective of me, since Tazz passed away, and James no longer here... as far as people around me, he is not thrilled at all... So, I may have people judging me, I am trying to find things I can do, while I hopefully still can do them, that I enjoyed for so many years. In fact, I even "banged" on my drums for a bit today! Bless Bub's heart and the neighbors ears....HAHA... but that is why my Xmas present early to myself, the western boots and jeans... I want to go to the new place that opened here and see if I can find a couple of people my age that I can become friends with... and

I joined the church for the same reasons... plus the new pup will give new "life" to my home... yet, my home is in desperate need of so much work.. and since the suit money fell through, (I was going to put whatever bit I may have gotten into fixing my home up)... I still need it painted outside, and some rotten boards off the bottom fixed, I desperately need a new roof, and the floors laid in the kitchen, bath, and laundry room. 
... plus I have new carpet for the music and spare bedroom, but it needs painting first, and ALL of the windows are in terrible shape. I am trying to get around to repairing them with the push pins and glazing, but it takes time and those windows are so brittle, I still have one completely cracked in the back, thank goodness it can't be seen, but it could fall out at any time, and then another one in that same room someone put "caulk" in a crack in it, so it needs to be replaced... then about a month ago... I think something happened but not sure what, I found a crack in one of my bedroom windows too.... I need a new fence all around my back yard, but I have a couple of dead trees in the fence line that need to be cut down... I have done some of it myself... and I am just going to put "hog wire" fencing or something inexpensive up... but again all of it takes time and money. Plus there are some things like laying the flooring, finishing the bathroom lights and fan... putting up the wall boards in my laundry room and so forth, that I can't do by myself... physically some of it I know I cannot do... I can't get in the attic to wire the lights and bath fan... I just would not feel easy doing that big of a job... and I can paint, but in some places outside my home is much taller than I would at my age, and especially with all of my neck, back, and osteoporosis issues, I would not chance falling...


I still face surgery for the new pain pump and I really need the lower back surgery. After this past couple of weeks, I realize I need that repaired too, or it is going to just get worse... and I am still dealing with the "wounds" from the abscesses and that is another thing, I have to drive by myself again up there and deal with that alone... it sucks... not that I can't but it still sucks... so I turn UP the radio and sing every song on the Radio as I drive... and block out the memories that still "haunt me"... kind of like the Brooks and Dunn song... one of their early ones... the Kix sang... Love may "die" but it "never leaves"... it is like "shackles and chains in a ghost like way, when it comes to loves memories... so true... and again it brings me back to what I want on my grave stone... "Here lies a girl who got everything she wanted, and who could ask for more.. Than to be Living in A Moment... You would die for... Ty Herndon was kind of a one hit wonder I think, but his song hit me strong years ago, and never forget those words... "to be living in a moment, loving every minute, living in a moment, you would die for".....

Thus the Lyrics...

Living in A Moment...

Well the world just lost two lonely people
The world just lost two broken hearts
The odds were against it but baby here we are
In our own little place in our own little corner
This old cold world just got a little warmer
For the rest of my life I'm gonna hold you in my arms
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
If you never get rich on what money can buy
It don't matter to me, I'll tell you why
I've got it all when I'm holding you this way
I'll live to love you, I'd die to keep you
Safe inside these arms that need you
I'll be loving you with the very last breath I take
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Ashes to ashes
Dust into dust
I'll lay beside you
Forever in love
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment, loving every minute
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Living in a moment you would die for
Oh baby, I'm living in a moment I would die for
Oh, living in a moment I would die for
 

Saturday, August 29, 2015

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

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:
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!

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....