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
Thursday, December 11, 2014
Tuesday, December 9, 2014
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.....
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.....
Saturday, December 6, 2014
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!
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/
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 |
Tuesday, December 2, 2014
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
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
#GivingDecember2nd2014Tuesday
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...
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...
Monday, December 1, 2014
"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!
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!
Saturday, November 29, 2014
Primary or Secondary Sjogren's - Not getting enough attention, research, medications and answers!
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| 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.
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