AUTOIMMUNE ILLNESSES, & CAN YOU have "Botox", "Restalyne" Or some of the other injections for lines around the "Mouth and Lips?"

QUESTION? ANY OF YOU WITH AUTOIMMUNE ILLNESSES, HAVE YOU EVER WENT AND HAD ANY TYPE OF FACE/LINE PROBLEMS DONE? LIKE GETTING A BOTOX INJECTION, OR SOME OF THE NEWER ITEMS THAT ARE DONE BY INJECTIONS? I KNEW ONCE I GOT MY DENTURES (DAMNED SJOGREN'S TAKING ALL OF MY TEETH) THAT I WOULD HAVE MORE OF A LINE ON EACH SIDE OF MY FACE AND ON THE TOP OF MY LIP... 

BUT OF COURSE WITH AGE THEY ARE GOING TO BE THERE AND GET WORSE. SO, I HAVE READ BOTH "OKAY" AND "NOT OKAY" TO HAVE THESE TYPES OF PROCEDURES DONE IF YOU HAVE LUPUS ETC??? ANYONE HAD ANY EXPERIENCE, AND IF YOU DON'T WANT TO SAY ON MY MAIN PAGE JUST SEND ME A MESSAGE ON THE MESSENGER. I AM REALLY, REALLY BUMMED ABOUT HOW THEY ARE WITH THE DENTURE SITUATION, WHICH I HATE THEM ANYWAY, THAT IS ANOTHER ENTIRE STORY! BUT, I WOULD LOVE TO KNOW MORE FROM SOMEONE WHO HAS EITHER TRIED TO HAVE IT DONE, OR HAD IT DONE ETC!!!!! THANKS! RHIA

ONE ARTICLE:   https://www.skintour.com/q-and-a/autoimmune-diseases-and-fillers-are-they-safe-can-food-help/

IFAA Post and an article about the "Cost of Chronic Pain"

http://www.motherearthliving.com/health-and-wellness/mind-and-body/cost-of-chronic-pain-ze0z1404zhou.aspx?PageId=1


Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!

 My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!

And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...

Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!

And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!

And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!

Hell, my TEETH, cost almost 15,000.00 when it was said and done....

"I Wish I would have known? - WEGO Health Writer's Challenge - April 29th, 2015 Wednesday

Today's "prompt" for the next to the LAST day of the 30 Day WEGO Health Writer's Challenge, is "What I wished I had known in the beginning of my patient journey?" In other words, when you were first diagnosed, what do you wished you could have known, asked about, done, been more capable of understanding and so forth.

One thing that comes to mind is I wished I had known more about different types of "Rheumatologists". Our physicians (and I say this often) have almost "specialized" themselves out of the everyday field of medicine.

Rather than have as we did not that many years ago, a doctor, or physician that could see you for a flu bug, take out your appendix, deliver your kids, and give your kids their immunizations. My kids are now 35 and 30 years old. Yet, they both were delivered by our regular physician, that did all of those things. Even if one of mine had been Cesarian, he could have delivered him or her.

A medical doctor was a doctor of "all". Unless you had something that was really extremely unusual, they did not send you to a specialist to "set a broken arm". If you needed stitches, they did not send you to a plastic surgeon. When babies were born, you didn't have to go to an OB/GYN. Even some surgeries, were performed by your regular physician, unless it was some "off the wall" type of surgery.

I began to notice, right after my youngest was born, that doctors began to "not" do everything. If one of mine had an ear problem, off to the ENT doctor we went. If you needed surgery, let's say "female surgery", a hysterectomy, you saw your OB/GYN.

Then when it came to cancer, you were sent to any number of "cancer" specialists. It began as kind of an "umbrella" physician, an Oncologist. Then you began to see that branch out into "breast cancer" specialists, brain cancer specialists, intestinal cancer specialists, and the list continues on.

If you had a joint that needed surgery. It maybe that your regular "Orthopedic surgeon" may not do a "hip surgery" or "elbow surgery". You had to take yet another step into the "Orthopedic Surgeon" who specialized in that particular joint.

Now, it is almost insane. When I hear or see just home many "specialists" there are depending on what is wrong, it can make your head spin.

So, had I known that a "Rheumatologist" that worked with RA or Lupus patients, maybe totally different than one that was more into other autoimmune illnesses, I may have seen the proper doctor a great deal more quickly than I did. My very first "Rheumy" as we call them, was very up in age. In fact, he still gave "gold injections" and this was about 2007. So, at the time, seeing him may have been the right thing to do. He "named" off after extensive lab studies, and also seeing me several times, a "few" different autoimmune illnesses that I have. He began with MCTD ) "Mixed Connective Tissue Disorder", Raynauds, Sjogren's, possibly Lupus, but he was not "set" on RA. As I said he was really up in age, but honestly he was one smart "cookie".

Yet, due to his not wanting to be as "aggressive" with the latest medications such as the biologics, I make the decision to find another Rheumatologist that would be. Well, little did I know, until after seeing 5 or 6 different ones, finding someone that would "treat all of them", in an aggressive manner was not easy. Each one either specialized in Lupus, RA, and so forth. Plus they were not much into the latest of medications.

So, had I truly known the factors surrounding getting into the proper Rheumatologist, I may have been able to "prevent" some of my problems that were getting worse, due to not being treated.

I also wished I would have began researching the medications, treatments, and doing my own blogging sooner. Even though I had done a great deal of research, when it came to the Sjogren's especially, I didn't do enough, soon enough I fear. Had I really known just how quickly Sjogren's was completely destroying my teeth, I would have searched for either a dental specialist on Sjogren's, or made sure my Rheumatologist did know about Sjogren's and was more apt to let me know just how bad it could get so quickly. By the time I knew just how bad my Sjogren's was, it had already rotted my teeth from the inside out. It was not until after the first two broke off at the gum line, and I went in to get a full mouth digital X-ray, that my teeth were goners. There was no more patching to do. There was basically nothing left to try and "save". So, wishing Sjogren's had been one of these that a really got adamant about, maybe, just maybe, I would still have some of my teeth. Now, my dentist told me, that even if I had known around 2007 more about it, since there are really no "medications" designed to fight it off, and the two I took really didn't do much. It was already too late. Thus, I spent all of 2014, getting the entire mouth of rotten ones all pulled, getting dentures, then going onto having "mini implants" for the bottom dentures, so they will stay in place.

I also wished years before I got an "official" diagnosis with the autoimmune illnesses, I had really pursued the reasons why, at well before the age of 40 years old, my joints were in need of surgery. I had 3 knee surgeries, an elbow surgery, a shoulder surgery, and many of my joints injected from about the age of 21 to 40! The answer I got for the most part when I did try and ask "why". was always met with, "Well we don't really know, But I feel you probably have "arthritis" that has surfaced early due to "genetics". Well, it was true, my Dad and Mom both had arthritic issues fairly early in life. Yet, nothing like mine where anything I did hurt.

So, more research, a better understanding of doctors, and asking more questions are things I do wished I would have done differently, more, better, etc. when I think back on when all of my health problems first began.

#HAWMC

Sharing More About My Pathway to being An Autoimmune "Voice" Activist, doing Advocacy & being An Ambassador for AI's - A Long Journey...

I am WAITING "patiently". I am supposed to get a huge "suprise" goody box from the Arthritis Foundation. Since I was not able to attend the Summit, they are sending me my "Platinum Ambassador" certificate, along with some other things from the Summit!!! Hopefully another reusable bag, so I can "advertise" plus maybe a T-Shirt smile emoticon I hope. We got them last year, so maybe that will be with some of the rest of it... I will take a picture after I get it so everyone can see what kinds of things I got.... I am still so totally bummed about not getting to go to DC I pray and pray, I will get another chance in the future! :):) I certainly hope so... being in DC for me, is the ultimate "advocacy" way to get your message across... I did last year in 2014... and even though I didn't get to go physically this past time, my heart, soul and spirit were there and I was "tweeting", blogging and posting everything I could to help spread the word!

I will have more and better pics in a bit.. my battery on my camera needs charging. But, here is a portion of the awesome box I received yesterday from The Grassroots Manager at the Arthritis Foundation!!!! Even though I did not make it to DC this year and be awarded my plaque in person, I hope next year to go one way or the other... I was so surprised and honored to receive this!

• 
  

  

  
  

  
  

  
  

  
• I am going to post a photo a bit later of ALL of my incredible things I received from the Arthritis Foundation. I was so thrilled when it came yesterday afternoon! I received my "Official Plaque" for being a 20014 "Platinum Ambassador", a new T-Shirt from the new Summit, several buttons I can wear, a "stress" ball, an awesome "reusable" bag!! This one has zipper pockets, and is lined very well in heavy plastic, with the whole logo on it from the summit. It is really awesome! I also got the brand new 2015 Ambassador "Too; lit", which is so nice. I have it downloaded onto my computer, but this one is so cool. It is in a beautiful bound booklet, with all of the "colorful" logos etc used this year for the Summit. By the way, it is "green" this year and so it my new T-Shirt! I am just so happy I received it with a beautiful note written by the "grassroots manager" who is just a real sweetheart! Laura has been almost like a "mentor" to me in so many wonderful ways. Also, last year along the way, we became "friends". I learned a great deal about her on more of a personal level and we shared things back and forth over the year about the Arthritis Foundation, but also what we had going on more about our own lives. I have truly been blessed to have her kind of take me under her wing. She was the person that helped to get me home, in the last years Summit of 2014, when Jim had the severe and very bad car accident at the last of the Summit. Her and Chris Nieto will always remain extremely special to me on many, many ways. I thank the Lord for them each day, and all of the help. compassion, support, and so much more they gave to me during that "trying time". Those times when life can all of a sudden within a breaths space throw a curve ball at you 90 MPH, & hit you right in the gut with full force. I am so indebted to both of them, plus the Arthritis Foundation; along with several others that gave me the support I needed when literally my knees buckled under the weight of way too much "life tragedy" when I least expected it. Pam Gill from the Central AF also was a huge help, and so many of the advocates, and my "family here on FB" were here day after day during those trying times when he was in the hospital for over 3 months. I never thought our lives would ever see anything
  "normal" again. As I said before, and we continue to see it, a "new normal" whatever that might be in our lives now. Denise Tekell you have also been here to listen, encourage, support, & be such a very dear, dear friend even though you are going through a very difficult time in your own life. I admire you so very much, for the strength you show, for your tenacity to find your way through such again a time when life seems to be so turned upside down for you and your family. Yet, you always have a smile on your face, no matter the amount of pain, and of fatigue, & all kinds of health issues you are dealing with, you have a kind word for us no matter what life is also pitching at you also, at a pace so fast, sometimes we find ourselves almost unable to "dodge" it. So many of you here have lifted myself and Jim up in thought, positive light and prayers. I hope EACH and everyone of you (and you know who you are) always KNOW and TRUST we are so blessed and so very grateful to have you on our fighting side of life, when it decides to deem a rapid punch when you least expect it. As I finish up "HOPEFULLY" over a YEAR of the NIGHTMARE from the Sjogren's and Losing ALL OF MY TEETH to that horrid disease, and Hope for these "mini titanium pins" will continue to help give me the added support I so desperately need in order to hold these bottom dentures in place, only to now fight another battle of a "new pain" - well it is not so "new" but much worse than it had been in my lower back, hips and legs. I am still not so sure my hips are also a part of the problem. In fact I am going to call my orthopedic surgeon and make an appointment to see him hopefully ASAP and see about having my hips injected again very soon. So, once again I face a "new frontier" in this battle of autoimmune illnesses. They can cut you down much faster than you can get up all too often... more later...
I am sure (Jim and I in fact talked about this yesterday) that at times people probably wonder If I have lost my mind.... Well, I didn't have a whole lot to lose, since over the years many things have certainly waxed and waned me in life. At one time, before I got into the "advocacy" work, and before I got "chronically ill"... my "voice" in my writing and some volunteer work was for "battered and abused" women (men kids etc)... but mainly women. Due to a couple of events that happened to me as a teenager, that I never spoke of here in this town at all, along with the living hell of an extremely abusive marriage that I stayed in WAY TOO LONG, before I finally decided to leave the entire state of TX behind... and find "peace" somewhere else.. which at first I thought was Lancaster CA, then things happened, I had to move back to TX, and again put up with the mental, emotional and physical abuse of someone who was "supposed to love me".... I had a knee operated on... and when it was well enough, I moved to Seattle WA... there of which I thought I had found my "life"... and I did in many ways. I loved my job there, and I was basically more "healthy" that I had been in years and years. Then I was struck down with yet some more abuse, that I got out of very quickly. It was not long until I began to I am sure now have the sign and symptoms of what I now know is the Lupus, RA, Sjogrens and so forth ... so due to life's changing path, just as a river can change course my life led me back here, to where I grew up... and at first I was angry... I was ANGRY AND MAD AS HELL! To be quite honest. That was the last thing I wanted to do. But I did miss my Mom and kids... thus coming back was a good thing... As far as the "abuser" he wound up in jail for a long time right after me moving back. So, that kept him out of my life... and after that, he has left me, (us) alone for the most part. Thank goodness. Back before I moved to Seattle, due to mainly "hiding" to keep from being abused (I was 40 at the time) many thought I was the one insane, on drugs, etc... no one was ever told the truth at that time... i hid it, kept it inside because I knew no one would believe me then. They would assume and did, that I was the one with "the problem". Later it all came out, and when that happened it stopped many years of gossip, pain, and others thinking I was nuts. Anyway, My advocacy, writing, poetry and so forth for many years had always been about the abuse, how to get out, how to get help, and so on... then it took a new twist after I became so chronically ill. During my "research" of what all of these "diseases" were doing to my body, I saw much that "called me into" the activist work. I wanted to TELL THE ENTIRE WORLD that I, THAT WE... all of us NEEDED ASSISTANCE.. we needed a cure, a reason why, MORE RESEARCH, more of everything, and I so wanted to be a part of that change.... thus my own illness led me to this road of being an Ambassador... and the challenge of trying to "make a difference"... but when the ordeal with Jim happened a year ago, things truly changed again... what many DO NOT SEE, are the days, times, moments, sometimes a week or two, that I DO FALL APART... I do want to just say to hell with it and quit... I don't want to make another step, see another doctor, take another pill, and at times I am truly SICK OF BEING SICK FOR ONE... AND #2 i am SICK OF ALWAYS TALKING ABOUT BEING SICK!! So, I like you try to hold onto one moment, one hour, one day, one month... and step forward sometimes to an abyss of the unknown... and allow "faith" to lead me where I need to go... Even now, I know in my heart, if I ever intend of being SERIOUS about WRITING my BOOK, I am going to have to "cut back" on some of my other advocacy work... as much as I never wanted to even think that, much less have to honestly deal with it. I am under way too much "pressure and stress"... I've always been a "yes" person... someone asks me to "help" and of course I am always willing and ready to step up to the plate and do whatever it takes... but between my own "all terrain" keeper of our domain, in other words, taking care of the WHOLE HOME, all of it... and then so much with Mom, that she honestly cannot do on her own... and my own illness, I am still way too overloaded to find the time to write, to blog, and to do the other things I feel that are also my "calling"....So, as much as I don't want to, I am going to have to back out of some of the activism for now. I can always pick it back up later.... but for now, I feel my work on my book, our home, and Mom's things... as well as my own health has to take precedence over some of the other things I have been participating in... So, as in the next couple of days, I make that decision of what to "hold onto" for now, and what to "bow out of" for now... pray I am making the right decisions and I am doing what "His" Will is, not just my own... so this is a perfect "holiday" to "roll away the stone"... and find out what is "truly meant for me to do over the next year or so"... I pray and hope for guidance, because Lord knows I may mess it up on my own.... Hugs back and much love.

Sjogren's, Dentures and the Ordeal of the nightmare money wise and pain wise to get "new teeth"...

Some Photo's of Me Recently after getting my dentures - I had never been one to smile in any photo's. I always hated my front teeth. I had "genetically" inherited my top two front teeth being "large". My Dad, my half-brother, I, and my son... and I am sure some of the other family on Dad's side all had the same. Plus my bottom teeth were not straight, and I had a 4 wheeler accident at 25 yrs old, that snapped the bottom half of one of those top front teeth off. I had it "built onto" and it stayed like that until earlier last years 2014, when Sjogren's took my teeth, quickly and quietly. It seemed it quietly came into my mouth, and within 4 months literally rotted about 8 of my teeth from the inside out, just leaving a "shell" that then broke off at the gum line. After having that happen about 4 times within 2 months, I went to see another dentist, who did a "surround" type of X-ray that showed just about every tooth I still had were also going to do the same thing. It was just a matter of a brief few months, and all of them would be falling out at the gum line, leaving me to have to have them pulled. So, I began to "weigh" my options that honestly, were slim to none. Even though it is an "illness" that literally rotted my teeth, and had nothing to do with my own dental hygiene etc... I could not get my insurance to pay one red cent on any of the massively expensive and time consuming work it would take to get me over the "Sjogren's rotting teeth" out of my mouth.

You are talking about somewhere in the neighborhood of 10,000.00 to actually more like 15 to 2o THOUSAND DOLLARS of dental work. I had to have ALL of the rest of my teeth pulled. Then due to my bone structure , the Sjogren's, the medications I have to take for the RA, Lupus and so forth, had also had its finger in the loss of every tooth in my mouth. That began about February 2014, and I still am not completely finished with the entire ordeal. After pulling sets of 5 to 7 teeth at one sitting, then they made my dentures, and pulled every last one in the top and bottom that had been left up front and visible. So, that was 11 TEETH in ONE sitting, and then they put the DENTURES RIGHT IN OVER THE TOP OF ALL OF THOSE STITCHES AND PULLED TEETH!! Surprisingly, it was not as painful as I thought, but for weeks and weeks and weeks, and even now I struggle about eating. There are certain things that in no way can I bite into or eat. Most everything has to be finely chopped up, even tomato and lettuce. I have to tear most things apart  in extremely tiny pieces. With the dentures I also don't have as much room in my mouth as I used to. Plus, I still lack going back and having "mini implanted little screw like devices" put into my lower jaw in four places, so that my bottom dentures will fit securely on those and not be moving around all the time. There is no way, I can keep them in place, without having those put in. So, that is another at least 3,500.00 for the four little pins and then adjusting the bottom dentures to fit down over those pins when all is finished. It is pure insanity, money wise, time wise, pain wise and the amount and length of time it takes to complete the entire ordeal. So, now after so many years of wishing for "beautiful teeth" so I can smile, I have them. I just never figured it would be because of some disease that ruined my own, and I would have to deal with a full set of "false teeth" or dentures. So, when you "ask" for something, you may get that "wish" fulfilled someday. BUT, remember it may NOT BE the WAY YOU HOPED for IT TO BE! So, here are a few new pics since my dentures have been put in.   

LOL!!!! Notice I STILL have a difficult time "smiling"... so many years of not because I hated my teeth... so breaking the habit is hard to do.  Rhia













                                                  

New Year, New Ideas and hopefully a New Me in many ways... or getting back to the Old Me one of the two...

I had basically stopped thinking about playing songs, drumming and so forth after Jim's accident. At that time we did not know if he would even be able to walk, but less play the guitar. But such as all of the other miraculous things that he continues to do as he heals... brought me to a place today... that I want us to be playing and singing, as well as writing our own music again. This song hit me as I came home from the market... I have heard it several times, and just absolutely loved everything about it... so I came in and Jim grabbed his guitar, and I grabbed a mic... and we practiced and then recorded it!!! For me I was desperately wanting to know if the dentures changed my voice as far as singing. I know at times speaking they have... and I hope for the better once they can "pin down" the bottom ones.. So below I will post the lyrics...

But I do also want to put up a picture of me I took today, along with a "Happy New Year" to everyone out there.
As we close the door on 2014, many of us close it on a year of health problems, uncertainty as far as our nation, and our world. We close it on doctors, medications and insurance companies, on pharmacies, all of the ones that have not worked to help us before the new dawn of a New Year. Many of you know the trials, tribulations, and the entire host of issues for myself and my family. Never starting on on January 2014 could you have convinced me that year would be filled with such as a entire realm of horrors, from my own illness, to Jim's nightmare of an accident, that has left us still grasping at which place we may turn as we wander through almost blindly the days and nights of what is still considered unknown. Yet, through the loss of his own use of his legs, the pain, the massive damage to his spinal cord and body, it still is healing as we know. How much more will that be after March 26th, 2015 we are not sure of... it maybe that he still has healing through years to come... or it could be that after a year has ticked by, what he has in healing will be what we must accept as the most there will ever be. Don't get me wrong, we are both extremely thankful and feel blessed he has the abilities he has now. Never did we expect he would leave the hospital walking on a cane, and using a wheelchair only when he would have to do a great deal of being up walking and on his feet. Which honestly, we have been able to avoid the wheelchair all but about maybe 3 or 4 times since he got home. Yet, the sad part of that is that he does NOT get out much. He does NOT go to the store, or get out and ride around with me during errands or even leave the house much at all. His essence of leaving the house, is usually standing on the front porch and the occasional stroll around our yard. So, for that it is saddening to see him struggle with having to almost be cooped up constantly in this tiny home of ours. Then of course we have endured the months and months and more months of my loss of all of my teeth to Sjogren's and all of the evil things it does when you least expect it. It has been a mixed journey for me... one of great disheartened days. knowing now I must find a way to adjust to dentures, which I will tell you right now is NOT an EASY FEAT!!!! IF I have learned anything from this past year, it is to NEVER ask for anything expecting to get it. YOU MAY GET IT, but NEVER in a way you imagined. I prayed all my life for "pretty teeth". Which I meant more like having the money to get braces and have my own teeth "fixed"... yet I now have "pretty teeth", but they are artificial in nature, and are hard as hell to get used to. I STILL cannot eat many things I love... from lots of fresh fruits, to some things you would never think would be difficult to eat, are almost impossible for me. I still learn something new everyday about how to maneuver around eating with the things in my mouth. Plus I still have "miles" honestly to go before they are completely finished. Health and money have kind of put a "damper" on me finishing them up. So, I am still incomplete when it comes to my new pretty teeth. Alas, as others think, and some don't think this way, but I try not to wallow around in self pity and the "why me" stuff. Yet, when it seems around every twist and turn of the day's beginning to the day's end something off the cuff happens, it makes it extremely difficult to think "positive" thoughts, and keep the light of faith and hope burning brightly...
So, I wish for everyone near and far, whether friend, neighbor, family member or stranger that 2015 brings in truth of good cheer. I wish for all to have a much healthier 2015, and may many of us go into a state of "remission" from these horrid illnesses that haunt us day and night. May we find our insurance and financial woes all the better, and may somehow, someway, new ground be broken for less cost in medications that we desperately need. May the "rich world" of corporations and big business, stop for a moment, put their greediness aside and see that we as human, and chronically ill humans need to be able to afford the often life saving medications we need. May we grow stronger in our advocacy and voices. May we find our family and friends bonds ever more full of honor and strength than ever in the past. May we find a peace in our minds and hearts that can surpass the highest comet's tail, and rain down upon us, the "reign" of a new dawn, and of a healing of souls all over and around our globe. My hopes are that men and women put down their weapons, be it guns, words, swords, and vengeful ways... may we life each other up and not strike one another down with the raw wounds that hate, greed, and jealousy all so often leave behind. My hopes are that I am able to pen the greatest book, I have ever pinned yet. May my body, soul, mind and spirit allow me to finish what I have began now for several years. Yet, always "life" somewhere gets in the way.... so my entire wish for my own personal days in 2015 are to be filled with "the voice", "the muse", the talent of writing what my heart and mind want to tell everyone... May we lift one another up tonight at midnight and wish all of this and much more for all in 2015... Rhia


Here are the Lyrics to the song that brought me so much inspiration today....

LUKE BRYAN LYRICS

"Roller Coaster"

She had a cross around her neck
And a flower in her hand
That I picked from the side of Thomas Drive
On our way to the sand
We found an old wooden chair
Still warm from the sun
Pushed it back, gave me a kiss
With Bacardi on her lips
And I was done

[Chorus:]
And we spent that week wide open
Upside down beside the ocean
I didn't know where it was goin'
Just tryin' to keep my heart on the tracks
I should've known that kind of feelin'
Would last longer than that week did
Blown away and barely breathin'
Sunday came and it was over
Now she's got me twisted
Like an old beach roller coaster

The rest of those days
Turned into long crazy nights
When the music got loud
We'd sneak away from the crowd
Under the boardwalk lights
And with all the things we said
What I just can't get past
Is the way we let it end
Now I'm wonderin' where she is
Knowin' I can't get that goodbye back

[Chorus]

She's like a song playin' over and over
In my mind, where I still hold her
I had the chance and I should've told her

When we spent that week wide open
Upside down beside the ocean
I should've known where it was goin'
Still tryin' to keep my heart on the tracks
And I should've known that kind of feelin'
Would last longer than that week did
Blown away and barely breathin'
When Sunday came and it was over
Now she's got me twisted,
Yeah, I'm still twisted
Like that old beach roller coaster

Like that old beach roller coaster

Thanks to vmh1205, Daisy Garcia, pamela, Caleb DeChand, Tyler for correcting these lyrics.

Some of Life's Little Disappointments - Especially When It Involves People, Promises and Illness

I've been on what some might call a "tear", "Rampage", "soap box", "griping session", or just plain bitchaaaching and griping over the past couple of weeks.

As this age, one would think by now, I would totally understand PEOPLE will let you down, disappoint you, make you feel less than, not as good as, or like you are some 3rd "rate romance", in some "motel rendezvous" - Touche' as some would say. A title to a song by Sammy Kershaw if my memory or what's left of it serves me correctly. Well, someone may have actually recorded it before him, but I do remember liking his version, especially with his voice singing it.

I am NOT "literally" speaking of any "incident" involving some 3rd rate romance or any kind of motel rende-anything... but the "feeling" you must have when you feel like you have some how it "bottom" of the pile of humanity. Those that seem to be sitting on top of you, and not even caring they are smashing your
"innards" onto the floor just beneath you.

I will say, taking totally up for ME, I've in all honesty, sick, not sick, felt like crap or not, kind of like "sickness and in health" have worked my butt off the past two years and honestly more, as a voice, advocate, volunteer, activist and Ambassador for the things I hold near and dear to my "stance" about humanity. I am definitely and maybe even a bit defiantly cut from a "different mold" than some. I would think that from the time I was about 4 years old, I totally became different than many kids, and later on, than many adults I have known or heard of. I have kind of "beat and whistled" my own horn and drum so to speak. I rarely go for the "normal" of anything. I've never felt being "normal" was anything but basically boring. And who in this day and age of almost being able to do anything... the SKY literally is the limit... would want to spend their life normally boring??? I did for years, OR I tried to "think" I was going with the general flow of those around me. Well, hell, I can attest that now I realize where I went, what I did, who or whom I met, saw, spoke to, and how I decided many years ago to live my life... was for many NOT considered anything but normal.


Sometimes I have to wonder if that is the reason I am "chronically ill".. as silly as that sounds, let me explain further. For those of us that are fortunate enough to have very little issues with our health, then you truly cannot possibly put "your feet in someone's shoes" that are chronically ill and/or in chronic pain. If you have been one of the people that rarely missed a day of school, went on to college, and the same happened, then you went out into the working world, got a job, and you just never miss work because of illness, surgery, and so forth. I have to wonder if that is even the "norm" now days. Maybe it is because I am a fully fledged "chronic illness" survivalist, that knows rarely a day that everything physically feels ALL RIGHT! It is usually one, two, three or more things happening to me physically, that effects my emotional and mental health also. If you awake to pain every morning of your life... you know without a shadow of a doubt (unless some miracle happened in the night) that you WILL awaken with some kind of ache, pain, or something that kind of makes your start of the day, a bit slower than many. For those like myself, that have to run to your desk (well almost more like crawl) take all of the "early morning" medication that you HOPE will give you a reprieve from pain, illness, or whatever maybe happening on any given morning of the week or weekend... so that is in itself is your 1st priority. Then you dive into go and turn on the coffee pot, and probably take a look at the MANY things on your list or lists that you either NEED to, HAVE to... get done... or more like what you can possibly PUT OFF until the next day or later in the day once your joints, bones, hips, shoulders, neck, feet, ankles, thumbs and probably the rest of you are kind of "lubricated", jump started like a small car battery, & then after the brain fog lifts... you maybe able to begin your day.

ADDING THIS FROM TODAY SINCE IT KIND OF GOES ALONG WITH THE ABOVE... NOVEMBER 9TH 2014...

AND HERE I GO AGAIN... STILL ON MY "SOAP BOX"....


As if I were not busy and stressed enough I decided to take the Defensive Driving Test again... just for the 10 percent off my insurance but all and any discounts help for sure. I am doing it all online which is great. But, damned I don't remember it being as long as it is now. It has been a long time I guess since I took it last. So, they have probably added more to it due to cell phones and all of the new technology in cars that can help and also hinder with distractions.... so now I am in the middle of that, along with waiting for Geico to answer a question before I change policies, and then I had paperwork to come in for another thing I am in that has to be done every 7 months, I have three appts next week, the dentist, blood work and my heart doctor, plus my last Arthritis Foundation Ambassador meeting for my year of training is Tuesday afternoon, so I find out it if I've done everything to be an Ambassador, plus possibly did the extra things in order to be a "Platinum Ambassador". I found out the article that I've sent to our newspaper goes in (either it went in yesterday and wouldn't you know I did not get my paper) or it goes in tomorrow. I had an email from the new editor of the paper. I had sent it in about 3 weeks ago, and heard nothing. So, I resent the email, and still did not hear anything. I went down there early last week with a copy of the email and the article. The woman told me then they were having a change of staff, thus the delay. Well, I got a very nice email from the new "editor" who told me he was going to make it a "Highlighted" Article in the "Life Style Page" with my photo on it and everything! So, it is in the works also... but through all of this, then have have a "week" reprieve from APPTS!!! - only to have ONE EVERY DAY OF THANKSGIVING WEEK!! I HAE TO HAVE my pain pump refilled 2 days before Thanksgiving, Mom and I see the PCP the Monday of that week, and then I have to go back to Dallas to see my Rheumatologist the day BEFORE Thanksgiving... when ahe the heck am I supposed to have any time for a holiday... sometime next year I guess!!! It is insanity, and that week will be nuts anyway, due to many being off the entire week, kids out of school, parents possibly taking a few extra days off... I hate to think about Dallas Traffic... especially during the week of a major holiday... nuts, they already can't drive on normal days, much less during holiday time... I dread it... MY problem is also I am not feeling very well at all... I thought a few days ago I might be either coming down with something, or had a flare coming, ... and I just have not had the energy I really need to get over all of these doc visits, taking care of the house, grocery shopping... speaking of... I went Friday for my "stock up" we are OUT OF everything grocery trip... and I knew it would be a load. I took in about 7 or 8 reusable bags knowing I would probably fill them full. Well, I got about 3/4 of the way through my list, and I was hurting so badly in my lower back, my right hip and lower back, and side began to just hurt like hell. My feet were hurting like they do in the mornings when I first get up, and I was just almost not able to push the basket around. I had to LEAVE off part of my list, get in line, check out, get them to carry the bags to the car, and go directly home. I was a total wreck, by the time I drove home, got 7 bags of groceries that I could barely lift into the house, and then had to put it all up... myself... Jim helped by helping me empty the bags and sort stuff out, but he can't bend over, reach up, get on a chair etc... so of course I still had to get everything put away, and was grateful I saved 46.00!!!!!! in coupons... but it took me a couple of hours to print some, cut all of them out and organize them, then get them and me to the store, and get them out and double check them as I bought items to make sure everything was correct and check out....then of course as I said above get them home, put up etc.... I have and continue to discover between the time it takes me to get ready, shower, hair, makeup, then to get everything prepared lists, coupons and so forth, put myself in the car, get to the store, and walk through a huge store then get everything home... it takes all of my SPOONS for the Day and then some... and IT SUCKS!!!!! It sucks to feel ill, it sucks to feel old, it sucks to look old, and it just all sucks right now.... I cannot seem to get myself organized enough anymore to keep me from taking 5 times as long as I used to before the illnesses....

Almost Forgot - Link to FB to See my New Teeth! Also other infor under a post about down!!

https://www.facebook.com/photo.php?fbid=10203697836581272&set=pb.1078281265.-2207520000.1409002262.&type=3&theater

I just had to show these off. I will of course get a much better pic of myself with them next time I am dressed and have my makeup done etc... They should be incredible for the amount of bucks they cost... and I still have more to go in about 3 months. In order to stabilize especially the bottom denture, due to the Sjögren's, we will have to do the "mini" little posts implants that the dentures will actually slide down on to keep them in place. That way I won't have to be so concerned about them staying in place, plus I will be able to eat like a normal person again hopefully. I know all of you are busy with kids back to school, etc... vacations ending, and back to where we all go once Summer Time comes to a quick stand still.... we are still in the middle of the law suit about the wreck... Jim finished PT/OT yesterday thank goodness... that was 8 weeks of 2 times a week that took lots of time up that I lost when I could have been doing more useful things. But, I kind of insisted I take him for the most part, so I made sure he was taken care of and not having to wait on some transportation to pick him up early, and then be late dropping him home... but he if he does decide to go back for another round in the future it may be that we have the transportation bus pick up him to take him and bring him home... I have LOTS of catching up to do, both on the house, on the computer, for my writing, for my advocacy..... ad all of the other million and a half other things I need to get done..... I promise to be "fixing" my blog better... I hope now can SEE where to POST a COMMENT... am trying to make it larger and a different color so you know to click it..... thanks all for standing  by myself and by Jim and all of my family through this... you guys and gals are the greatest....