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.




Christmas Eve 2014...

Well, I am not sure what to say honestly when it comes to the reflection back on 2014, how I feel about the holiday season, and just how quickly it has seemed to "pounce" upon us.

From my "up" moments of being in Washington D.C. in March this year, to the tragic call from my daughter on the 26th of March telling me my husband had been in a very bad car accident with an 18 wheel tractor trailer on his way to the Airport in Dallas to fly out and be with myself and his Mom...

From there, this year has been filled with so many up's and down's.. either I am not well and are having flares, or the entire ordeal with my teeth and the Sjogren's, it seems we just never had a "break" of good luck any where we turned.

Of course I cannot say that entirely, because we are blessed that Jim survived the accident, and even though he is considered "paraplegic" he can walk with a cane. He still has many issues, including balance issues, but still he for the most part can get around with a cane, unless it is somewhere big or if we are going to do something in Wally World, which is a huge building to try and walk through with a cane.

But, between his plight and issues from the wreck, and then the Sjogren's literally eating my teeth away from the inside out... and the "forces" that are waxing and waning back and forth over the settlement of the accident, of course our finances are also worse than tight for sure.

We have been able to scrape by, but with some issues he had with a change in some main lines where the "servers" are that "host" the clients websites he has, we may have lost at least 2 clients, which were the two that usually were continually wanting updates and so on, thus those were the two that brought in a bit of a salary, although small, but yet better than nothing for sure. Now we are looking at the fact if we lose them, we really will be in a bind financially. They took away the medical benefits Jim was getting while he was in the hospital. Get this, they took MY OWN disability and counted it towards "income" for him... and then when we are probably 300 percent under the poverty line, they said my check was like 12.00 a MONTH over the limit thus they dropped his medical coverage. So now he also has no medical coverage at all. That means any doctor he sees has to come out of our pockets, and they are getting more empty by the day...

I also realize we certainly are not the only people in TX or in the nation that are fighting back hard times as far as finances. Many have been out of work so long, or have had to go through what savings they may have had to just live. So, I am not complaining for just my family, but for the many others out there with either the same or worse circumstances.

My "hopes" are for the coming 2015, to be even a better advocate, and good more activist and ambassador work through the charities and non-profits that I truly believe in. I know for many people, now days it is difficult to know where you might like to donate, and wonder if your money truly goes for the purpose intended.

My Mom is a very good example of someone that is not sure where to donate to. It gets to the point that she gets phone calls every day almost from one or more places asking for donations for "this, that or the other". With things in the world as they are now, even though we hate to think so, there are people out there, who take advantage of either elderly folks that may not understand what they are asking about, or they do give and then have their identity stolen, and so forth. I have had to warn my Mom time and time again to NOT give to anyone that is soliciting over the phone or knocking on her door. We even have a sign up on her door, plus I have put one on mine also that says NO soliciting, and that means don't ask about "lowering" utilities, or getting donations, or "insuring your water pipes" (now that is one I cannot fathom anyone falling for), but constantly somehow they have her name down and probably know she is up older and think that the can finagling her into giving out information that they can use for their own gain.

----------   ******** Beyond Christmas Eve*********-------------

Try December 30th 2014 - and beyond....

I figure if I want to get much more in BEFORE 2015 Rings in, I had better get these fingers to moving a bit faster. Probably more like pull my head out of my butt, and out of the 29,000 other places it is, and try to put down something that may make some sense out of my own life, and possibly others...

Not one of us is a "mind-reader", a "fortune teller", a "profit" (or I guess I am not sure about that one, I feel the Lord could actually send a profit down anytime he wanted to)... but when I talk about the word "profit" I am more meaning someone who tries to deliberately con someone out of money telling them they can "read their tea leaves" or follow the life lines on their hands... or read the Taro cards... and it is NOT that I don't believe that things such as that or people such as that can exist, it is more that I feel there are not near as many of these types of "world palm readers or fortune tellers" than they try and allow themselves to be. Each of us have our own unique ability to "feel" when something is right or wrong I think. Whether you truly tap into that ability is where the hairs split, as the saying goes. You can take that pathway and follow your gut and heart, and learn a whole lot about yourself and your fellow man and woman. Or you can choose to put on blinders, have tunnel vision, and only see what is directly in front of you. To me, that is not really a great way to live. Of course it is a frightening thing to "feel" something, or to "think" something about your life, or a loved ones life. But, it does not always have to be in the "blackest of black ink darkness".

You may find yourself, if you open up thinking about the "awesome" happenings in life... yours, family's, friends... or even strangers on the street. My family on my Mom's side have that type of "uncanny" ability to feel almost too much at times. My Mother really has it, yet she does not open up a great deal and talk about it. Yet, there are times something really strikes her in a dream, or as a feeling, and she does what I do, calls and checks on whomever it is she is overwhelmed with in the dream.

I've ran into more of a "night terror" wall, when it comes to if I wanted to call it a "dream world". I began trying to research the issue as to why almost every night of my life, I have a propensity to have not just night mares, but more what I call night terrors. Many nights, I wake my own self up. Either the night terror carries me to a place that I feel I am suffocating, or I am being "flogged" not exactly by a "strap" but more of a flog with words. It usually has to do with people in my past. Either people I went to school with, or have known from various jobs in my life. When I first finally got completely out of the abusive in every sense of the term, relationship with the "2nd" jackass I had been married to for far too long, I had them nightly. I almost could not lay my head on a pillow and try and sleep. For I knew in my dreams he would come after me in one way or the other. Usually through a window, with a knife, sometimes trying to run me over (which he did try in reality a couple of times)... just horrid night terrors that I thought would never go away.

When I decided while I still lived in Seattle, to venture out on my own, have my own apartment, take care of myself only... I thought the nights would be worse with terror. Yet, it seemed that I overcame them for the most part. There was something about living completely alone, and taking care of just me... that settled my unsettled soul. I could sleep like a baby, but just had hell working due to all of my health problems. Thus, as the health problems grew worse, even then the night terrors seemed to have died down a great deal.

As the tides of my life once again changed, moving fore and aft, to the South, then the North, from the East to the West... it seems my life has always been one that I must "Roll with the Changes"... Maybe that is one of the reasons I love that song so much... because all my life I've lived through a dichotomy ... where one part of me, seems to move one way, yet a portion of my life tends to be in another dimension. That may sound all too profound to even comprehend, but I've been called both a dichotomy and a conundrum .... which I used to really be pissed about. I took both as a huge insult, thinking that people saw me as some kind of "nut" who could not get their life straight enough to stick to the program I guess you could say.

I was very wrong in that thought. As the years have went by, I am truly both of those words and so much more. I can parallel a shooting star and head in a very straight and narrow path, or at times, I can be in all different paths, much like a comet's tail that tends to "flare" off in different directions, yet all at once. That portion of me reminds me of a huge firework exhibition, where some of them go straight up into the heavens, and then come down in a fountain of color. Sometimes red, green, pink, blue, purple... every color in the rainbow...

Now why my brain takes me off on several courses when I write, I guess is only something another writer, author, will understand. Many of us multitask in our daily lives. We deal with jobs, bills, kids, hobbies, houses, and so forth. Often juggling several different items at once during our daily jaunt through out what we call life. Yet, for a writer, it is sometimes what is "multitasking" in our brains. For myself, I may write a line or two, when something else hits me, just due to what I had put down the sentence before, thus I am off on another pathway through the minds of what many deem as insanity. Maybe to be a true writer, you must deal with the insanity before you can sanely write.

As I think about and write about the things I want to have in my next published book, I find myself getting lost in the circle of the ring of infinity. Where one thing may end, yet another begins at that particular jumping off spot. Such as I maybe penning something down about a particular autoimmune disease or symptom, yet that takes a turn, and around the next bend could be something "related" but sounds completely different than a "stuffy old autobiographical" book that has already been written, just out of a different mind set than another illness/author may write it. That does not mean that ANY book, about how one lives through these chronic illnesses that have captured our lives, bound us down inside of our homes, minds, and it seems the only contact we have with the real world maybe social media.

When I was listening to Laura Hilldebrand speak about her biography she wrote, about someone else and she also took me to a place in writing that I never quite thought about before. No matter if we are writing fiction, a novel, a movie script, music, or a biography, a "piece" of you flows through those words. You find a common ground between who or what you are writing about, and lace it between the person you are, and the outcome is a pure mixture of both... your view point about someone else, yet through the eyes of someone who has also gone through the hills, valleys, the darkness and light, the favorite inter-sanctioned places that whom you are writing about has been. You relate, you can empathize, your individual yet, duo of souls can dance together, in a seamless binding of what pain, power, gain, richness, poorness, and all that have motivated one soul to do well to another. If in your own heart you know "It is well with my Soul"... a Baptist hymn from a long time back, then you have meshed all of your own feelings, with someone else.

This may also mean about the way you write your own "auto-biography". As you pen those words, the ones that tug at your readers heart strings, gives them the emotions, the good, the bad, the unthinkable, the peaceful... all you have wrapped up in that book binding it is a gift that shall mean a hundred different things to a hundred different people that reads it.

I ran into a really "terrible" but in all honestly excellent way to explain what I mean. I made a post on social media, Facebook. My intentions were to absolutely honor the person that I was speaking of... for he had passed away extremely suddenly and was one of "us"... with Lupus, with RA, Sjogren's and he suffered from several vital organs that were all involved with the illnesses. So, I was posting something from one of the organizations that I am an Ambassador for (Platinum Ambassador now)... a portion of a newsletter that was sent to me, from the Foundation to pass on freely to social media, friends, emails, wherever I might like and to whom I might want to pass onto... I had just "pulled" the entire "newsletter" from my email and made it a graphic basically. There were no "clickable" links posted with it. Of course the Foundations name etc was on it... a portion of the article was commending not just myself but all of the North Central Texas Regions advocates, activists, Ambassadors etc. for getting several more of our Congress people on board. We felt this was an incredible feat since we had mid-term elections that "hit" us in losing several that were on our "Arthritis Caucus"... and were "helping to advocate" for us from the Federal Congress. Well, when I "cut it out" and copied it into a .jpeg it never dawned on me that on the very bottom of the newsletter it had a "donate now" button on it. I really did not pay it much mind or give thought that someone would misinterpret what I was trying to say.

I had been trying to say that our "fallen Advocate" would want us to push forward, to be proud of what we were and will accomplish. He would not have wanted us to wail and loose site of what our "jobs" were all about... which was advocating to win the fight against Autoimmune and Autoimmune Arthritic Illnesses. Thus to me, posting that newsletter, that actually came out the same day he passed away to me was "honoring" what his wishes would have been. Well, most of his "advocate" and volunteer work was done with one non-profit, charity. So, someone got the "impression" even though I carefully worded it that I DID NOT MEAN monetarily, but more in our advocacy work he would be sad if we didn't show what strides we made... thus having 5 new Congress People on board for him would have been as his saying "Onward and Upward"... but of course SOME PEOPLE have to READ things into what was posted and think that I meant for people to "give" donations in "His name" to this particular Foundation. Which happened to be the one he did most of his volunteer work for. Which that NEVER even entered my head... I meant in "heart and soul" type of work not anything that had to do with making a "donation" in his memory anywhere, unless that is something personally people want to do... then that is between them and their own hearts... not for myself nor ANYONE to decide. Well, it got back to me very quickly, of course.

And I "flew off the handle"... it hurt me so deeply that here I was trying to put something up "good" that this gentleman would have himself been so proud of in his memory, but just because I did not think to cut off the bottom that said "Donate Now"... and as I said it was NOT any type of link to click at all to donate a thing... but others got their panty hose in the crack about something that was supposed to be uplifting, kind and from the heart. NOT EVERYTHING in life has to be ABOUT CASH!!!! I think it hurt me that anyone would feel the "need" to ask me, much less even think that is what I meant. IF they would have READ MY POST, that went along with that graphic, they would have IMMEDIATELY known I was NOT ASKING FOR DONATIONS IN THIS MAN'S NAME!!! For no one... no charity, no non-profit, no where, no how, but someone had to "go there"...

Then once all was "explained" and said, done and as far as I was concerned over with... to CLARIFY things and not have any more WONDERING... I took down the graphic, left up the post with an explanation as to why the graphic was NOW by itself and took the "Donate now" off of it!!! Someone asked me why I "bowed down" to that crap....

It is not that I "bowed down" at all. What I did was STOP the stupid rumors coming from those mouths that did NOT have the courage to ask me. They went behind my back, told someone else, and then they had to come and ask me... Which was total nonsense. As I also put in the post, if for any reason, anyone has an issue with myself, my posts, or what my intentions are, ASK ME!! Don't beat around the bush, walk around the mountain, and get someone else involved in it. I could have answered the question and all would have been done... Now I am still somewhat perturbed... and I notice not many have said much on my Facebook page after that... well it could be the "holidays" and people are out and about .... busy... thus are not posting as much. But, I feel someone got the butt up over the dash board for nothing... and now they are trying to back track out of it.

Okay--------- to be continued

"Onward and Upward" A 2nd Very Grave and Close Loss of A Dear Friend, Advocate, and a Patient of RA, Lupus, and more...

I almost could not believe my eyes as I read on Facebook last evening, that one of our "own" - in fact a 2nd one this year we lost to these Autoimmune Illnesses. Anthony Hileson was only 62 years old. He had a terrible time with RA, Lupus, and other AI illnesses, along with the brain fog and more than that the extreme pain that comes all too often with these horrid diseases.

After our loss earlier this year of Ali, who was in her early 20's... now we are mourning yet another "victim" from these diseases.

I got to know Anthony through Facebook, and became close to him due to him being in the Dallas area, and he in fact was the one that told me about my now incredible Rheumatologist. He "referred" me to Dr. Q. as well always have called him online, and Anthony was also looking into getting a pain pump shortly after the holidays, which he had talked with me in length about since he knew I had mine.

We have met him once, in fact when I was seeing my Rheumatologist. Anthony was in the hospital at the time right there by the doctors office. So, Jim and I met him for a brief few minutes. We had also had several conversations on the phone.

He wanted so much to put in all he could to help the IFAA, and everything that was related to helping be an advocate and activist and volunteer again the Autoimmune Illnesses that have now taken his life.

He was a very spiritual gentleman, kind, and wished everyone well. Even when he was very ill, he always tried his best to be online to do his part.

"Onward and Upward" was a phrase "coined" by him. So, it is very appropriate that this graphic below express his deep love of advocacy and people. May you rest in peace, without any more pain, sorrow and loneliness Anthony. Your giving of self without any selfishness at all, just to be there for others will always be remembered.....

and if you care to see more about Anthony, you can find his Facebook page at:

The Arthritis Foundation and Our "Victory" from the 2014 Summit!

I am so elated to know my "voice" was in part what made the "Summit" on Capitol Hill a Success Story for Us as Patients, Caregivers and more, along with such an Amazing Success for the Arthritis Foundation!!!!!



It is with pride that I talk about my own personal story and share it through the Arthritis Foundation. I know in my heart they truly care about us as patients. I am so pleased to be able to help out. I am also so proud to be in a very "elite" group which is the "Platinum Ambassador's" for AF!!!!

Wishing Your and Yours A Very Wonderful Holiday and A Happy New Year!

Before time flies by and I don't get here to post as I want to... I am doing this a few days early, so the "brain drain and brain fog" does not take me away from doing this.

I am writing a long piece about the holidays, the things I miss so much, that I can't do anymore because of the Autoimmune Illnesses, and just how heartbreaking the diseases are for so many. They take the quality of Life away that you had, and turn it upside down. They often take away many things you used to love to do, even small things we used to take for granted now, are sometimes impossible to achieve.

I shall post it when I am finished but for now, I want to ...

WISH YOU AND YOURS AN INCREDIBLE CHRISTMAS, A 2015 THAT SHALL BRING PEACE, HARMONY, GOOD HEALTH, PROSPERITY AND MANY MORE OF THE WONDERFUL THINGS IN LIFE YOUR WAY... and I also wish our WORLD would FIND PEACE, A WAY TO GET ALONG WITH EVERYONE, COUNTRY TO COUNTRY, NATION TO NATION, NEIGHBORHOOD TO NEIGHBORHOOD... FOR EVEN IN OUR OWN TOWNS WE SEE THEM DIVIDED AND IT SHOULD NOT BE THAT WAY... So the saying from the Word of the Lord... 

Peace on Earth and Goodwill to "Men" and Women....





One of Our Own Tiffany Westrich on this mornings session of "The Doctors"!!!!


An International Autoimmune Arthritis Movement of awareness is launching THIS FRIDAY, December 19th, the date the International Foundation for Autoimmune Arthritis's short segment on Rheumatoid Arthritis airs on national television.
Will YOU join the Movement? Here's how:

1. Be willing to share your story on Social Media starting on December 19th, 2014. This is the date the Doctors' will air a short segment on Rheumatoid Arthritis, featuring IFAA's CEO and this is when YOU should start sharing YOUR story about your journey with Autoimmune Arthritis!

2. Decide what you want to say. In just a couple of paragraphs, tell the world what makes your disease different than other arthritis and autoimmune diseases.

3. Share via Social Media. Tag IFAA's Facebook and/or Twitter. Please also use hashtags #AutoimmuneArthritisAwareness and #IAAM.

Why should the world just view ONE story on the 19th when they can see 100's???? If you are posting, we'll be sharing!

Note: This Movement will begin on Friday, but we'll keep it going as long as YOU keep it going. Want awareness for a day, submit for a day. Want it for a week? Keep submitting for a week. Want it for a YEAR? Keep 'em coming, we'll keep on raising awareness together!


  you can share by posting on this page (you can start your own post) and we will start sharing stories on Friday! You can post after Friday as well, we will keep sharing stories as long as they keep coming in!
An International Autoimmune Arthritis Movement of awareness is launching THIS FRIDAY, December 19th, the date the International Foundation for Autoimmune Arthritis's short segment on Rheumatoid Arthritis airs on national television.

Will YOU join the Movement? Here's how:

1. Be willing to share your story on Social Media starting on December 19th, 2014. This is the date the Doctors' will air a short segment on Rheumatoid Arthritis, featuring IFAA's CEO and this is when YOU should start sharing YOUR story about your journey with Autoimmune Arthritis!

2. Decide what you want to say. In just a couple of paragraphs, tell the world what makes your disease different than other arthritis and autoimmune diseases.

3. Share via Social Media. Tag IFAA's Facebook and/or Twitter. Please also use hashtags #AutoimmuneArthritisAwareness and #IAAM.

Why should the world just view ONE story on the 19th when they can see 100's???? If you are posting, we'll be sharing!

Note: This Movement will begin on Friday, but we'll keep it going as long as YOU keep it going. Want awareness for a day, submit for a day. Want it for a week? Keep submitting for a week. Want it for a YEAR? Keep 'em coming, we'll keep on raising awareness together!

(Photo: Left and Right- Doctors from the episode, Center Left- CEO of IFAA, Center Right- Pfizer Representative/Segment Sponsor)



http://www.thedoctorstv.com/articles/2865-managing-rheumatoid-arthritis

And above is the link to see Tiffany and the important information she shared!!!!
 

Missing Many of Life's Amazing Things ... through the Eyes of an Autoimmune Patient



Memories of What The Past Life meant back then, and How to “begin” Anew Once Your Life has been totally turned upside down and pulled inside out…

I started writing this yesterday evening. Then I worked on it some this morning. I have a great deal to add. But, I am in the middle of having the Flu. I woke up yesterday morning with the worst headache, even worse than any migraine... and my entire body from head to toe hurt and ached. I knew I had to been running a fever, thus I was. It started at 99 degrees, and quickly began to rise even after aspirin, Tylenol.... it was already up to almost 101 by the time I decided what to do. First I called my PCP. But was on hold at least 20 minutes with them. Thus even though I did get to leave a message for my doctor, I knew he would probably need to see me. The last thing already figuring I have the Flu, and then my Autoimmune system compromised.... I decided as badly as I felt to go to our local Urgent Care Center. So, I did. Thankfully when I arrived hardly no one was there and I got into see the doctor quickly. He did verify I have the flu. I got the Tamiflu script and he told me to be prepared for a horrible cough to come. So, he gave me cough medication to be prepared for that. Anyway, I wanted to at least get this much posted... and I promise when I am feeling better to finish it.... but here is the beginning of just how much your life changes when an autoimmune or chronic pain or illness comes along...


I had this come to mind yesterday afternoon. I was doing something in the kitchen and I got to thinking about just HOW MUCH life has changed within the past 20 years. Some of those things are okay to gone and blown into the 4 winds. Some although, have created turmoil in our lives, and honestly it scares the hell out of me.


When I think back just 10 years ago, Jim and I had first met, in 2003, on a Memorial Day Weekend. I was searching at that time for the “one” special person in my life that I could share everything with. I actually went to Seattle thinking I had found him. Yet, that relationship was never meant to last. As I’ve seen and felt now, I realized that relationship was never really meant to be. It was more of a stepping stone to get me out of Texas, out of the horror of Domestic Violence that had been dragging me into the black hole of no where. I needed a drastic change in order to get my own life back, to get a new perspective on life, and a new, The ”odd”  part of it all, is I went not truly prepared as far as my clothing, my attire was more for a lighter cold, and not a heavier cold weather. Fortunately, the weather was fairly nice at that time of the year (I had arrived in Seattle at 8:00 pm Halloween Night 2001).

I think back on the times even before Seattle, before the Autoimmune Illnesses began to rear their ugly heads. Those days are for the most part all gone. The years I could decorate my entire home for Christmas. From the kitchen, bedroom, to the living room, kids rooms, bathrooms and even outside the house. Everything was in a “Kris Kringle” theme. I was always so Christmas oriented, and I never wanted it any other way. That was just one piece o the puzzle of life, that always seemed to make sense. 

Never back then did I ever give a thought that life would be “different” and that I would not be in a situation that I could no longer do so many of my daily living activities that I had become accustomed to over the years. I had a few instances that due to Migraines I was to bow out and not attend a few things. Yet, never would I have dreamed within 10 short years, I would never be able to do so many of the things I loved to do again. But, it had and had happened.

I can’t blame it on anyone or anything, I’ve just fallen into a realm of life, that has robbed me of the beautiful things I used to be able do. This is an insight as to just how much my life, as well as many others lives, have changed from the bottom to the top in so many different ways. We don’t even realize how many things are never the same. I think we become so complacent in some ways, while our concentration then goes to other places where we never had to go. For instance, new doctors, all of the different diagnosis, medications, what we can do with diet, exercise, different and alternative ways to help ourselves feel better. I think for me I went into the “untrue” mode. I refused to believe I had a chronic illness or illnesses that would take my life and flip it all around. Then for many, we go from doctor to doctor, fighting insurance companies to pay, finding out some doctors that we think “should know” about our illnesses do not. Physicians had so “specialized” themselves to the point that one Rheumatologist may deal with RA, but not really treat Lupus. Another may deal with Lupus, but not really deal with MS. Multiple Sclerosis in itself a strange disorder. It is more of an “autoimmune illnesses that harms the nerve endings” thus often time a certain type of Neurologist maybe the doctor to see. Yet again some Neurologists know little or do not really treat MS. So, it can be an extremely frustrating, trying, wanting to give up time that will actually take YEARS in many cases to get the “right” physician, who knows the correct information, and can properly give you a diagnosis, that ultimately can then be addressed and treated.

So, a couple of days ago, I got to thinking about the “little everyday things” I no longer do. The list continues to get longer and longer. I no longer cook as much from “scratch” as I used to. Baking has always been one of my favorite things to do. An example is just about every year since we moved here in this house, I have made home made pumpkin, date, banana breads and more. Then one year I actually made “mini-loaves” of fresh home made baked bread right out of the oven. It turned out so beautifully. I also make sugar cookies, cut out and decorated, fruitcake from my own “family” recipe, fudge, sometimes peanut brittle, cookies with the kisses in the middle, and more. We always wrapped it all up individually in decorated plastic wrap, then made a “Christmas Sack” for each of our 5 closest neighbors. I was a highlight of our holiday. I spent weeks and weeks baking and cooking hand and home made everything.

This year things are so just under the radar of holidays, that we probably not give anything to the neighbors, if so it will be only a few slices of fruitcake. I’ve not made any of the breads, the cookies I am not sure if I will feel like it, especially now since I have the flu! I don’t do as much baking from scratch at all, but have had to go to boxed cake mixes and store bought frosting. Cookie mixes rather than me put them together myself, and same way with pies. I often buy the “canned” fruit, or creme - like key lime or lemon, then I do make a crumb topping for them. So, that is just one of the many things, I no longer am really able to do. Either fatigue, or being so slow at everything, or being in pain, or feeling ill… even my own “daily home” cooking has fallen below “home made” which is NOT good because everything is full of salt, sugar, even the “light”, “low fat”   or low carb stuff tends to be not that healthy at all,

I used to mow my lawn, and do all of the yard work. From planting, to gardening, to flower beds, and house plants, I did it all. Now I do well to half way rake up leaves, a couple cans at a time, and forget the mowing, weed eating, and even trying to hoe is very difficult for me.

I can no longer wear my 5, 6, and 7 inch platforms heels. I have loved those so much even before they became all the rage again in the last couple of years. I have 3 pairs of very high heeled platforms that I totally dream of wearing again. When i go into the shoe store it almost makes me sick to see all of the incredible high heels and platforms. yet I cannot even attempt
to think about wearing them out in the public. I would certainly now fall, due to my artificial knees, and taking a chance of a fall, just is not appealing when I have “severe osteoporosis”.    

Of course no snow skiing which was my biggest thrill. I can still somewhat play the keyboard, piano, and I can still band around a short while on the drums but not for long.

Some things I can do, but it takes me 20 times longer than it used to. If I am getting dressed to go out somewhere special I must start at least 4 hours early if not more. I am then lucky if I am ready on time, Even typing this, of course I also have the flu at this point, but my wrists, thumbs, hands and fingers are beginning to hurt and become too stiff to type. The brain fog hinders what used to be a mind that could spin around in 15 directions all at once, and I could multi-task and get them all done and feel wonderful as I did them. I miss college classes. I miss being able to walk 5 or even 10 miles a day. I miss traveling, vacationing, heading out for a weekend  get away.

I get sick of planning a day around being sick. I hate getting up and never knowing if I will feel “okay” or horrible that day. I am pissed that I can’t do things like put up my light fixtures, finish mudding the bathroom walls, painting the outside of the house, laying my flooring in my bathroom and kitchen and all of the DIY things I used to do on a daily basis, never giving a thought that I may not be able to do the little things, like get flowers for Christmas out to Dad’s and my Grandparents Graves. By now I would have Dad’s Tree out there all decorated… and Poinsetta’s for my Grandparents.

Sometimes it is difficult for me to type, to write, and to clip coupons. My hands don’t seem to work as well, and neither does my brain. I FEAR that if I don’t write my books (the next 2) very soon, I may lose the “brain power” wording, spelling, and aptitude it takes to write a book and get it published.

There are days that even the simplest words seem impossible to spell. Maybe the simplest sentence I have problems with finishing properly. I am one to NOT use the same word over and over again. But, without the Thesaurus, I would never have the brain as I used to have that remembered everything, no matter how large or small it was. Days I lose that ability to find them within my own thinking.  I used to be a grand speller. I had 100’s on every spelling test and then I won many spelling contests because I was so great as a speller. People cam and asked me how to spell a certain word, and used to I could rattle it off without hesitating.

Being able to learn new things. That was my forte’. Any and everything I didn’t know something about, and was interested, I wanted to learn. And, I did. Whether it was flying a plane, or knowing how one flies was remarkable to me. Even my “Annual Christmas Letter” that was usually all decorated with a border and colors for the typing, got left with me printing the letter on regular paper, in black and white, with no border. It was too much this year for me to deal with and I knew I needed to get the cards out before it was too late!                                                                                                     




More to come......

And thus it continues... the brain fog is so bad, I forgot I had already posted part of this... so here is more.....

Even at this, I am almost feeling like I got "off topic" of what I wanted to say... but I shall post this next installment....

It continues to be the “little” things I had enjoyed so much in my years before I became chronically ill. I was able to do just about everything from going to college full time at night, working full time, taking care of my two kids, a home, a mortgage, car payments, and everything that goes along with those things.

The day that I knew for certain I would no longer be able to hold down a full time job anymore, was on of the most depressing, the saddest, the fearful, time of my life. I had no idea how I would make it in Seattle. Jim and I had already met, but he was living with a friend over by Lake Washington, he had a full time job, that actually was knocked to part time, so he had his own portion of rent and bills to pay. I was very leery of anything at that time…. from even thinking about Jim and I, we had just really met, to finding another at least part time job. I had rent monthly, and a car payment monthly, plus my bills which were not that bad with just me. So, I looked actively for a job daily, from the paper, online, asking around, and even went for a couple of interviews both at banks. Both seemed like great positions, but they also seemed very stressful, and it would mean me working MORE hours that I already had been working, which was one reason I got ill in the first place. So, I was offered both, but turned them down graciously. This was about time my lease for my apartment would be coming up. I knew that the woman above us was not thrilled with our TV (which was a 16 inch tiny TV with an antenna inside, or she would gripe if we smoked outside on the deck… said she could smell it… well there were lots of wooded areas, and honestly I think she was just jealous that I had found someone that was coming over fairly often. Anyway, the problem was my own next door neighbor. He was the one with the very loud music and television. But I knew I needed to go and not sign into another year’s lease. So, when it came time to make a decision, I decided to take my stuff, and move in with Jim and his room mate. It seemed “smart” and cheaper at the time. We did have some beautiful memories of Lake Washington, and it was an incredible several months we spent there before we decided it was more than time to move out and find our own place. We did just that. We moved just North of Seattle into Everett. Smart move, loved our apartments and the manager was such a sweetheart….

 It seems from there things began to look brighter… and then in 2005 March, Easter Sunday, I lost my Dad to a brain infection from a knee surgery that just never turned out right. He had that surgery on Feb 15th 2005 my birthday. So, there is always mixed emotions when I try to celebrate.

We found ourselves going ahead with our marriage plans in Vegas about 10 days after going back to Seattle, for I knew Dad would have wanted it that way. Then we also knew it was only a matter of time, and I would need to be back in Texas, close to my Mom. Being an only child, and my Dad took care of everything, Mom was not even able to put gas in her car.

At the time, I had already hired an attorney, and was in the process of my 2nd appeal for my Disability, Social Security benefits. After a short time in California, for a job Jim got that was not working out, we loaded up the U-Haul once again, and headed for Texas. We had no clue what we were going to do when we got there, but we knew we had to come back. So on December 19th, 2005 we arrived in Ennis Texas. I had already checked on apartments, so luckily we got into one just a couple of days after arriving. They were so nice and hurried to clean it, touch it up and laid new carpet. So, we celebrated that Christmas in Ennis. Actually both of my kids, and my two Grand children got to come up and we had Christmas at our apartment. We had bought the very last “real” Christmas tree in town, and it was scrawny but we decorated it, and it turned out beautiful.

We spent a year there, and in about August 2006, I got word I would need to make a trip to Seattle for my “hearing” for my disability. We flew back, not knowing what to expect, and when we left I did not know for sure if I had “won” my case or not. It might be a month before the judge sent me the letter. But, I could tell from his comments in the hearing that he probably would give me a favorable outcome. Thus about 5 weeks later, I got my letter saying I did get my full disability and they paid me retroactively back from 2004, so I got a fairly good sized check. We looked for a house, small, but something we could work on, yet not too much work, and thus we found our house in December 2006, and got to move in after much DIY renovations, paint, redoing floors, and so forth, at the end of January 2007.

My disability then meant I had Medicare. I took a Medicare Advantage Plan, and then the real fun began. I had 8 surgeries in  2007 alone. Two total knee replacements, a shoulder replacement, wrist surgery, bladder surgery, my other shoulder had been scoped, and my hips injected a couple of times. My left elbow had surgery, and the right one was giving me issues, but I was fortunate enough that my right elbow and so far both hips have been able to stay together enough that the corticosteroid injections have kept me from having surgery.

In 2009, I went to a new PCP (Family doctor) that after a couple of months of seeing me, did a great deal of blood work. I had even mentioned Lupus, RA, or some other type of autoimmune disorder. He thought so also, thus the blood work came back showing I was positive for probably Lupus, RA, and later confirmed I had Sjogren’s and Raynauds.

After those diagnosis, things went nuts from there. Rheumatologists, several that really were not specializing in my type of issues. The pain had already sent me to a pain doctor, who was treating me for the chronic pain, migraines and all of the pain that went along with the AI illnesses. In 2010, he made the decision I needed an “internal pain pump” to try and get my pain more under control. So, October 2010 I underwent yet another surgery, having it put in.

All of that and more are why my heart breaks when I watch someone on Television skiing down a slope full of white powdery snow. Or, when I don’t feel well enough to go out to the store, or to even sit here and type. The brain fog causes me all kind of issues, from having to make list after list …. Even writing this, I did not recall that I had already posted a portion of it on my blog….
                                                                                              



PLACES I FOLLOW IN MY TWITTER - "Twitter" Hashtags...

As our "methods" of finding information online, or passing information around online continue to evolve, it is sometimes almost impossible to keep up with what everything means... we now have "twitter", and also "hashtags", we have Facebook groups, pages... we have Pinterest, blogs, Linkedin, we can "follow" some page, group, non-profit, we can be volunteers, Advocates, Activists, Ambassadors, we can be the ones ill with chronic pain, chronic illnesses, and the thousands of online sites you can get to for information about everything from doctors, medications, Pharmaceutical Companies, we can find kin folks, friends, classmates, ancestors, family trees, online books, online instructions... we can order online & get things in email, or by "snail mail", or pay bills online and have it in "real time" post to our accounts.

Our "daily" online world changes what seems like every moment. If something happens in a country thousands of miles away, we can know it in an instant. We can save hundreds of thousands of lives in knowing about large storms, violent eruptions, medical history in the making, watch surgeries online, watch directions of how to online, see our friends and family online, talk to everyone online.





I find I have a difficult time keeping up with exactly what some of our newest "ideas" mean. About the time I "almost" figured out Twitter, and hashtags, then this new "hashtags" main came out, and I am trying to figure out the proper way to use them. It seems they can be an "instant link" to every "search term", site, Facebook page, everyone on Twitter... technology in the making when you breathe in and out, something new has happened. So, I am "listing" some hashtags that you might find useful in a general sense of your searching for different things.

I will add to this list as I go along. In fact I may put this into a different "page" so it will be on top and available for you....

           
#AARDA

#Chronicpain

#sjogrens

#partD

#RA

WEGO Health Awards Annual Event!!! Please go by and "Endorse" me!

Things have been hectic with everything going on from the holidays, to my own issues with going for check ups, getting my pain pump refilled, getting Jim to a decent, reputable pain doctor (MINE)... and hopefully getting him the medications he needs in order to be able to get up and function without so much horrid pain.


Jim's pain of course, like mine and many others is a complicated situation. After the car accident, he has lots of damage to nerves, to the spinal cord, to muscles, and so forth. So, it takes a combination of medications, not just the "standard" pain meds, to help him. Things like Baclofen, Zanaflex, Gabapentin, are three of the others he needs in order to get the pain of nerve damage, muscle issues like spasticity, under control. Then some regular pain medication for other pain. So, going to the specialist enabled him to get ALL of the meds needed, rather than just "pain meds".

I am still reeling also from the ridiculously stupid incident in Corsicana that I would NOT TAKE my dog to .... the so-called "Oral Surgeon", more like a money hungry greedy, jack ass, that practically ran out the back door, when he heard the lady in the front asking me for MONEY!!! It was "supposed" to be a "free consultation", or at the very least, NO other costs of Xrays. Oh hell no, of course he had to do his OWN freaking Xray, in which my dentist had just done not 3 weeks ago to show the HOLE between my sinus cavity (Maxillary Sinus Cavity) and my mouth. As I've said that was caused due to a very difficult root in an upper molar that was so close to the "boney part" between the mouth and sinus cavity that it actually pulled a hole in between them. It appears in my mouth to be only about like the thickness of a small toothpick. But in the X-ray, it does show a larger "communication" as they call it in technical terms, maybe a 1/2 inch or possibly longer between them. Well, I went down there prepared to set up a "more aggressive plan to fix it" which would entail probably bone implant. I have already had it "sewn" closed initially, then my own dentist did a less invasive procedure that I wished I would have asked for "gas" like I had been with the rest. He had to literally "cut" a flap of my gum and try and put it over the tiny hole, then suture that into place. Hopes were it would "seal" itself over and we would be done... but IT IS COMPLICATED RHIA!!! So "Rhia's Law" NOThING is "simple" with me... always has to be complicated as hell and stubborn, and cost more... and. and, and .... and ... and then more... but the jackass down there basically as far as I am concerned ripped me off of 130.00 and DID NOTHING for me... in fact he was even "wishy washy" ABOUT ME having it "fixed"!!!! How stupid is that, plus he wanted to do the "same thing" that had already been tried and failed... and charge me $2,400.00!!!!!!!... YES Two Thousand Four Hundred Dollars and was going to do it under a "local" and not even gas!!! He is nuts. I watched on U-Tube what "needs" to be done... and I NEED TO BE KNOCKED OUT to do it!!!! It is insanity now days to get anyone to do their damned job as far as physicians, pharmacists etc...

Yesterday, I went to 3 DIFFERENT PHARMACIES, to get Jim's meds filled... and used to if they did not have it, they could order and have it the next day... NOT ANY MORE.... now like WG's told me they only ORDER MEDICATIONS ON THE WEEKEND!!! Excuse me???? No wonder they never have anything in stock... that is crazy!!! Hell not all that long ago, I could go into my pharmacy in Corsicana, my Pharmacist, would GO OUT OF HIS WAY, AND even call around to other pharmacies if need be to get my meds if they did not have them at the moment!!! And this was not a "small" pharmacy, but it was actually Wal-Marts pharmacy in Corsicana!!! He was amazing.

RARELY DID THEY NOT HAVE MY MEDS... and if they did. 99% of the time, they got them that day, if not the next for sure......

Well, I finally had to just get up, get a few things done around the house, that I REALLY DID NOT feel like doing, but I did them anyway... and now I think I may sit down and watch a movie with my puppies....

I am seriously considering writing yet a 4th book. This one will be "fun" for myself and everyone who loves the "colloquialisms" of different states, even different places within a state... accents, the "sayings" we have heard from our child hoo years and so forth. My husband has been on me to actually put ALL that I have and say all the time together and publish a book of them. Thus, I've been putting down many, many of the sayings as I've went through the years. Now, I am trying to think of a really great name for the book!!!! Then I can "register" the title, start on the cover of it, and then it gives me something very "tangible" I can work with. Wish me luck as a venture on out yet into another realm of my life... many good times wrapped around lots of those "sayings" I've heard since I was a young child... this time I think Dad will be (would have been) proud... :):) It will be dedicated to him, because he is the one that filled my head full of them for so many years... :):) More to come..... 


It is Official - I am a "Platinum Ambassador" for the Arthritis Foundation!!!

I was just totally on Cloud Nine yesterday afternoon! I received an email from someone I've became quite good friends with over the last about 9 months or so. She emailed to tell me that I had qualified for the "Platinum" Ambassador Activist, which is an elite group of Advocates!

I had tried to spend lots of time this past nine months or so, putting myself into the throws of Advocacy, Activism, Ambassadorship, .... volunteering to keep me mine as clear of "brain fog" as possible! Plus I also used my "voice" and Advocacy work to help me not think about the horrid event on March 26th 2014.

It has been a very long way to get this far from Jim's wreck, and have some type of "normalcy" to our lives. We still have a great deal more to go, and our "normal" will never be what we considered a "normal day" again. But, through the pain, tears, the smiles, and frowns, and all that has been in between. Each day has been one step, one moment, one hour, one day, at a time.

Yet, we are blessed that as bad as it really is, it could have been much worse. He can walk, with a cane. Not for very long right now. But, as time goes by, we do have hope still that much of the pain, the stiffness, the ability to be "whole" again.

So, through the "window" pane of activism, and my role of becoming an Ambassador for the Arthritis Foundation (now to find out I made Platinum) feels like an honored victory for myself, and my family.

My Mom and Jim are so very proud of me. They have witnessed all I've done to be as an Advocacy and Voice!

So, that means in March, I get to go back to Washington D.C.!!!!! The Annual Summit will be there again next March, and I'll have my "warm, fuzzy, walking boots ready! Last year I sure wished I had taken them, so this time they WILL BE with me!!!

So, that gives me another realm of my "voice" I will work on throughout 2015! There are lots of new things in store from the Arthritis Foundation, and I am elated to be a part of such a worthy organization.


I will keep you informed of course as time goes on. My blog will be a huge part of my voice, and now I have something else to put into my book, that I hope to finish up by the end of 2015!

http://www.arthritisfoundation.org

Join Us at the Annual "Jingle Bell Run" in Ft. Worth TX at Burnett Park TODAY!!!!!

I so wished I could go. I have been just in such horrid pain with I guess a very bad Lupus/RA flare, and Jim is not feeling the very best, so as much as I want to be there in person, I will be there in heart and spirit!!! 

I will keep everyone updated as everything takes place. It will be a fun time for everyone, so please have a great day and you can see it all at the "Jingle Bell Run".

by the way, see the website for ALL of the locations of the run across the nation also!!!!!!   http://www.arthritis.org/get-involved/jingle-bell-run-walk/


http://fortworthjinglebellrun.kintera.org/faf/home/default.asp?ievent=1112128

There for Me...

As any writer knows, sometimes things don't play in your mind as maybe they should be. And where inspiration comes only a true writer can see. A silly TV show that went "viral" for many seasons... and for years I never saw any of the episodes. But, this evening as I watched one of the reruns. Something spoke so deeply to me, that I could not even lay down and sleep. I had to get up and put it down on "paper"... Now some may "get the wrong impression" when they read this... it has NOTHING to do with my life now or anyone in my life now. But, it hits me from way back when... I thought fairy tales never came to an end.... So this is a "song" I heard in my head tonight... and I am compelled to post it here. I started not to, and just put it up on my blog... and it will definitely be there also... but for now, here it is:


There for Me...

When you needed me, I was there for you…
And you pleaded for me, cause you always knew…
When you would call, I could hear your words of sound…
Yet, when I called out, you were no where to be found.

We lit the sky up with love in the words…
Sounds came crashing down, as I walked towards…
To find out I was there for you…
Yet, where you were I never knew.

We took that plunge when you were so young…
Singing the songs that should never have been sung…
You turned around and saw me, and even then I knew…
You would cling to me, yet I could never cling to you.

Many nights I seemed to fly so high…
Above the moon and Earth, into to another sky…
As I turned to see the stars within your eyes…
All I could see was all those sad goodbyes…

When you needed me, I was there for you…
Tumbling down the mountain side, I bled for two…
Me and you should have never have been…
And now I feel the pain, it’s as bad as it was, way back then.


Then the darkness fell all around…
The chaotic world, yet not a single sound…
Of those words you said back then…
Did you mean them, when you said them way back when.

I came to you wanting to journey through space and time…
Make my life out, just like Cinderella in a nursery rhyme…
Yet I turned around and then I knew…
That was way back then, but you never had a clue…

The years have flown by and in those many nights of tears…
I cried out to you, yet you never feared…
You thought you and I would always be…
And even now you still try to cling to me.

When you needed me, I was there for you…
And you pleaded for me, cause you always knew.
When you would call, I could hear your words so dear…
And in those words it took me many years to fear…

That for me, never you meant to be…
What you promised, was to always cling to me…
And now in my lonely nights I silently pray…
Never tried to hate you, but I found no other way.

To get over you for so many years…
Through painful nights and all too many tears…
I fell from my own mountain top, and finally seen the end.
Of what I thought, was not even there back then.


When I needed you, you were never there for me…
I could not see the forest, for you stood as the tallest tree..
Blocking this vision, for too many years…
So what I cling to now, is what I know I fear.


Rhia Steele 12/2/2014


Fighting "Monstritis": Tucker Beau, 6, and his loved ones on their juven...

‪#‎GivingDecember2nd2014Tuesday‬


https://www.facebook.com/GivingTuesday?pnref=story







My "giving" today will be "giving everyone" an idea of how to give on this "Giving Tuesday!" Whether you are giving a "tip" to your guy that takes the groceries to your car, your beautician a larger tip, giving to one or more of your favorite charities, giving a lift up to an elderly person out of a chair, giving a hand putting a neighbors trash out at the curb.... maybe giving a hug to everyone you see today, and a handshake and tell them you appreciate their "service"... at the pharmacy, the bank, the doctors office... whether you give a lunch today through a local food bank, or donate blood to the blood bank.... it is not how LARGE OR SMALL the gift is... it is the "giving" that counts. Give a compliment, give your heart, give unselfishly, give information, directions, information, there are SO MANY ways, you can give of you, your time, yourself... just give... 

I have posted some places on my Facebook page that are non-profits and so forth that you can give to...whether it be the Arthritis Foundation, The Diabetes Foundation, to AIDS, to the homeless, to the people who need, and to those who just need a smile... give hope... for giving of oneself, is the gift of hope!!!

This NATION and this WORLD above ALL NEEDS HOPE!!!! It can start with "you" and "giving Tuesday!!!!" 

And it would be so incredible if giving Tuesday, turned into giving Wednesday, Thursday, Friday, the holiday, the month, the season, the year.... just one "good deed" can bring millions... so please take a moment, and give... a prayer, a "thumbs up"... Hope... 

With my gift to you today... Rhia... 


"A Sweaty" Drenching and Fearful way to Wake Up...

Well, I have fussed and griped about this "sudden onset" of where I wake up in a drenching, T-Shirt, jogging pants, sheets, blanket, hair, bed kind of SWEAT!!! It has been happening now for about 4 years or so. I have asked all of my doctors and no one really gave me a straight answer. In fact, until today, I finally found out a real medical "name" for it! It is called "Primary or Secondary hyperhidrosis"!!!!

I happen to be glancing at some posts that came into the "Inspire" web blog site by the Arthritis Foundation. Low and behold there is a new post titled "Drenching Sweat"!!! So, I clicked to go and see if anyone had posted anything that might help point me to some kind of answer. I ALWAYS GET, could be your "chronic illnesses", RA, Lupus, etc... OR maybe "hormones"... these are NOT hot flashes... I am bone chilling, shaking, freezing at the same time sweating enough to wet towels down... even my robe last week one morning was totally drenched!

And the "weird" part of all, I usually NEVER SWEAT!! Very Rarely, even in the HEAT and HUMIDITY OF TEXAS, I may sweat a bit at my hair line in the Summer. But, I can work outside in the yard, etc... and yes maybe a bit, but NOTHING like this!!!

Anyway, one of the ladies had posted a link to Web M.D., that described it and gave a name for it. And yes "several" of my medications certainly could be a cause, plus the RA, Lupus and so forth.

The "oddest" thing, is the medication I use for Sjogren's. It is supposed to "help" with my salivary glands... it is called generically "Pilocarpine" or name brand Salagen. It TOPS the list with several other medications as being known to cause this!!!!  Happy, NO! I am not happy. I am not really sure that the medication does much for my salivary glands and other moisture as far as nose and eyes. But, it could certainly be a cause for this totally odd, off the wall, SWEATY RA chick!

5 Talk Street - NBC 5 #605 E - Arthritis Foundation - Jingle Bell Run/Walk

Primary or Secondary Sjogren's - Not getting enough attention, research, medications and answers!



 
http://www.sjogrens.org/




I REALLY have been pushing about Sjogren's now for a long while. It seems I never REALLY had ANY of my doctors take it all that seriously, even as many times as I brought up the dry mouth, dry eyes, all of the mouth lesions I had and so forth. Then when only about a year ago, I began having my teeth literally rot off at the gum line and fall out, I began to see them a little more concerned. YET, I am STILL THE ONE who really pushed for the medication, which for Sjogren's there is only two. I tried both and am on Pilocarpine and have been for a long while. I spent several years chewing gum with no sugar and the Xilytol or however it is spelled in it, because it was supposed to HELP with moisture in the mouth, used eye drops and still felt like I cannot talk very long without being hoarse and sometimes losing my voice, or if I go anywhere, I have to talk something to drink... not even to the Wally World, and if I am going to shop, that means picking up a bottle of diet Sunkist, or green tea or something, so I can drink it as I shop. If I get in the car to go anywhere very far away from home, I go with a drink and gum. Well, of course ALL of what the few teeth I had left, by the time we finally found out how much damage was done, did make little difference. The "complete surround kind of special X-Ray" of my mouth, teeth, and jawbone, showed 99 percent of my teeth already going to rot out anyway. Thus as many of you know I went through the torture of having the rest pulled, fitted with dentures, of which AGAIN due to the Sjogren's, the bottom ones won't "hold" at all. You also need some "moisture" to help keep them in... the top ones do fairly well. I guess I have enough with the "suction" of them, along with the powdered Fixodent that goes on them, for the most part they stay in fairly well. So, I had to wait at the very least 90 days after they were all extracted before we could even think about the "mini implanted" little pins that my bottom ones will be fitted on, after they are implanted down into my jawbones in 4 places. Then my dentures will be "modified" to fit down on those pins which should hold them into place. I also found out, that the top ones they "usually" don't pin, which I thought they did. BUT, if mine won't stay in as well as they should then I look at putting 4 MORE on the top!!! Which will be ANOTHER OVER $600.00 FOR EACH PIN!!! Of course I still have the "oral/maxillary fissure" which sounds horrid, but a small hole as I have said before between my mouth and sinus passage caused by a root to pull a hole in it, when the tooth was extracted. So, that also is contributing to the top one coming a bit loose at times. Air can get in underneath it from that hole and then it makes the "grip" it has to the pallet of my mouth break loose. Anyway, back to my issues with Sjogren's. I REALLY feel as much as I PUSH for RA, Lupus, Raynaud's, Sjogren's, MS, FM... and other autoimmune illnesses and/or rheumatic and arthritic diseases, that Sjogren's needs to truly be addressed much further also. When it can truly cause as much damage to vital organs, eyes, mouth, teeth, stomach lining, the esophagus, swallowing, drying any "form" of mucous membrane, plus now I read that there is about a 50% CHANCE OF DEVELOPING NON-HODGINS LYMPHOMA, if you have Sjogren's! Women, of course tend to me at much higher risk due to the Sjogren's being Autoimmune in Nature. So, as I begin to think about my new book that I shall be writing on over the next year or so, and doing my part as far as helping to be a voice, to advocate, to be an activist, volunteer and Ambassador, for I feel ALL of those are very crucial also, I am going to be trying to learn a great deal more about Sjogren's, both primary and secondary. I also would love to hear from any of you that have it in either way. I am going to post this on my blog (by the way I am waiting to see some comments and posts from you guys and gals also)... and would love to have some of you jump on the band wagon about Sjogren's. It can be a highly dangerous, and sometimes deadly illness in itself. Plus you can also have Celiac Disease due to Sjogren's too.

Holidays Upon Us - Feeling Lousy - But trying to "Put on a Happy Face"

Just about every one of us know this dilemma. We try our best to make the holidays a special time of year. Whether it be the upcoming Thanksgiving and Christmas Holidays, or the others during the year; none of us want to "ruin" our family and friends holiday season.

So, we often put on that "Happy Face", and try to hide behind the mask of pain, fatigue, stiffness, swelling, and all of the other horrid issues we put up with physically, mentally and emotionally during the year and especially during the holidays.

I am headed out for now to have my pain pump refilled, so I shall finish this later this evening. But, I do want to say I pray everyone will have a safe, Happy and a reprieve from illness for the holidays.....

Rhia

Have a Wonderful Holiday!  

 

 

SECOND PART!!!!!!!!

As promised I am "here", just a bit later than I thought I would be. It has already been one helluva week. Between 2 days of doctors appointments, getting ready for whatever kind of Thanksgiving we are having (not in a bad way, just seems thing keep getting changed around), the entire ordeal about Jim, the accident, all of the ongoing and going and going about doctors for him that either are just NOT accessible, OR they are total jerks and quacks. Talk about some "scheming". I found out quite a bit more on this whole thing of getting things taken care of with doctors that are NOT on the up and up. 

Speaking of... the up and up.... Something happened today while I was at my pain doctors office in Dallas having the pain pump refilled. Of course it is NO secret that I have been in an insurmountable over 5 to 7 days of unrelenting pain. I of course mentioned it to him, and thought he might take the "hint" to either up the pain med in my pump (which can be done) OR just allow me to take my "breakthrough" medication a bit closer together, at least until I am over this damned hump of pain. It is just insanity and it is driving me over the insanity brink for sure. I did get a huge shot of Solu-Medrol yesterday while I was at my PCP office for a recheck. After telling him and then I asked about going to the corticosteroid injection at the office, and then a 14 day step down dose of prednisone, he said yes, most certainly we can try... thus we did. I seemed to have been a bit better this morning. I was able to stand on my feet almost without wincing in pain. But, as the day wore on, between the drive to Dallas, not getting to really eat, then going through the entire refill crap, and of course driving home... Then a "hog for punishment"... I decide to go out after getting home, and do a bit of my "coupon/sales" shopping, which I knew was probably a mistake and really stupid honestly. It was already almost 4pm, I was exhausted in every way from mental, physical, emotional... you name it... but I did manage to make my way down to our local Dollar General and pick up a few things that were "crazy" on sale. By the time I got home, I was just totally wiped. I had to let CVS and Wal-Greens go until maybe tomorrow, and I may try for Family Dollar, but I am not so sure yet. 

I will NOT shop on Thanksgiving, sorry but I think that stinks to the high heavens, that anyone in retail makes employees work on a major holiday!!! If everyone does not get what they need by Wednesday, then they can just do without it for one day!!!! It irks me to the ends of the Earth that they open those stores on a holiday like this one. Anyway, of course "people" will go, and if they come, of course that is money in their pockets, so open they are.

And you can certainly forget me getting out on "Pitch Black Friday"... I am pretty "hair brained" at times, but being out at 2am in the morning to shop, is just not what I call "fun"... Now IF we were headed for WINSTAR, now that I WOULD GET UP FOR! :):):)

Plus in all honesty, I don't have a huge family to buy for anymore... and sometimes it has become easier as the kids have grown up, and like my daughter, has a family of her own, to just send them money, and let them get what they want, need, and like. I swore when I saw my parents do that, I would NEVER ... I always believed in getting a present for everyone... that is partly what made the holiday, Christmas. But, as I have aged, and the kids grow so quickly, it now makes sense as to why my parents, and their parents did it. 

I really should be writing some words of wisdom for those of you who are looking and searching for "answers" in how to "survive and thrive" during the holidays. I am speaking of course at the moment about those of us with chronic illnesses, and chronic pain... from the autoimmune diseases, to chronic pain, migraines, CFS, FM, and the entire gamut of these that cause us grief most every day of our lives. I think I have truly discovered why I love to make a trip to the casino every once in a while. It is because once I step into those doors, until I step out and get in the car to come home, "illness" flies out the door, and stays out until I leave. It is the people, the noise, the lights, and most of all, your mind or for me, my mind is "clear" for a while. I am NOT thinking about medications, doctors, tests, prescriptions, pharmacies, people that are just plain stupid, lazy and don't give a damned that don't need to be in the business of health care at all, if they DO NOT LIKE PEOPLE!!!  I hear it and see it constantly... they either just don't give a damned about us as patients, or they don't really want to be there, ... but I see it more and more from all walks of what the medical profession is supposed to be... greed, laziness, no training, not doing their jobs, and we do it for them... it just makes my blood boil, when I hear that "tone" on the phone. You know, that one on the other end who could care less about my needs as a patient and what THEY should BE doing and they DON'T!!!! 

Anyway, so to step into that huge building that has NOT ONE WINDOW in it... NO CLOCKS, and every kind of sound, feeling, sight, and emotion rolls into those slot machines while I am there... so it is not really the "gambling"... Lord knows I DO NOT have "gambling money"... but it is the get a way from it all. Even if it is just Sunday, and we don't stay the night, still it is a rest from the daily mess. I should "coin" that phrase, "It is a rest, from the daily mess." to put it lightly.

So, for me, honestly, I am in so much pain, even as I type this I am wondering why the hell I am!!! My wrists, fingers, elbows, shoulders and neck hurt so badly all I want to do is sit in the floor and cry, cry, cry, cry.... but then I would have a Migraine, thus that is not a help, maybe a release, but certainly not a cure.

I have "lots" of advise about how to "help" your holiday run smoother, but everyone has their own way to handle it. Some just say NO... some stay home, some go out to eat, or to a movie, or to the casino... for some it is being alone and for others it is being with family and/or friends. For some it is "giving" of oneself, and serving at a homeless center, or church to others not as fortunate as many of us. So, you have to "dig deeper" within yourself to figure out "how to survive the holidays". 

Lately, I will say for me, I have been extremely fortunate, and found some incredibly super bargains on a few outfits, a pair of shoes, some leg warmers I found today, and also racked up some savings on some new eye shadow, mascara, eye liner and I even bought some "false lashes".. but it has been years since I tried to put them on, so I have not braved it yet. So, for me, between reading some really great "beauty" tips, especially those that are truly inexpensive etc... and get a few clothes for a tiny bit of nothing... (I've probably spent about 50.00 on ALL of it)!!!! Between "mega-markdowns", super sales, cashing in on coupons, I got a pair of 80.00 shoes for like 10.00, bought about 7 or 8 tops for about 15.00 or so, makeup around 10.00 leg warmers 2.00!!, plus a few other odds and ends... but I have not spent hardly anything for all of it! So, that has kind of been a "new release" for me... finding ways to have "nice" stuff, without breaking the bank... the better the bargain, the happier I am honestly. So, when things are too much to bear, I open up an email from Total Beauty, or a couple of others I get newsletters from... and even do a great deal of DIY, skin, hands, feet, nail treatments... gosh sometimes we do not realize how many things we already have in our home that work great on skin, hair, nails and so on... so I look for those, and give them a try... if they suck... they suck... if not I am not out anything... 

Okay well, it is midnight, and it's been forever since I've stayed up late like this to write... I am hoping it will help me, and if we are lucky, maybe you might get a kick out of reading it....

Happy Thanksgiving, Rhia, Jim and the family