Discovery Could Lead to Earlier RA Treatment — Pain News Network
Sharing more great news in regard to hopefyully finding a way to detect RA and Osteoarthritis much sooner by other lab work!
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Tuesday, September 15, 2015
Monday, September 14, 2015
IFAA Post and an article about the "Cost of Chronic Pain"
http://www.motherearthliving.com/health-and-wellness/mind-and-body/cost-of-chronic-pain-ze0z1404zhou.aspx?PageId=1
Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!
My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!
And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...
Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!
And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!
And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!
Hell, my TEETH, cost almost 15,000.00 when it was said and done....
Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!
My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!
And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...
Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!
And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!
And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!
Hell, my TEETH, cost almost 15,000.00 when it was said and done....
Sunday, September 13, 2015
Distressed, Disgusted, Distraught, Disturbed... AND MANY Other "Realms" of Distaste I Feel With Our Nation, Our News, Our World & All Who Choose to Bury Their Heads in the Sand...
If YOU are trying to figure out exactly "why" the name of this post is "OFF" from my usual, that is because IT IS, "Off the Beaten Path"...
You can say that this involves "physical", illness, pain, destruction, devastation and moreover, I am totally DISGUSTED with many of us, and I must say I include myself in that "us"....
ow the "news" can sit around and bring about MORE "crap" about "email servers, emails that are eons old, Trump and his debauchery,, along with each and every other "Nominee" - whether "Red" or "Blue" is beyond and above what I comprehend!!!
When just here in our own nation, we have thousands upon thousands of acres of precious land, homes, trees, earth, that first has suffered immeasurable damage from drought, and then to be completed brought down to its knees with wildfires above and beyond any one's imagination act as if it is just another day. W have "EVIL" doers on one of our main Highways through Arizona, SHOOTING arbitrarily at any and every thing they in their warped minds they see.
What about all of the flooding, the horrible and completed demolishing of many of our states in the past months with water, MUCH, MUCH MORE water, drowning people, again demolishing everything in its path, leaving people once again homeless, without jobs, and the loss of everything that they ever worked for and cherish.
The EVIL out there that lurks in movie theaters, in Malls, on Highways, on our own city streets, that think no more about shooting people and killing them than they do breathing air... the morality, the greed, the power hungry, the people that have NO care for "human life"... and what makes that even worse, is OUR YOUNG PEOPLE... are many of these horrid, evil filled "humans". How can someone so very young get to be so very wicked in a few short years of life?
How can the "educated" ones that have knowledge at their fingertips, families that love them, take off to some "foreign" nation that literally HATES all Americans, and "join forces" with those who intend to not just harm us, but kill us, and then they strap on "bombs", blowing themselves up, in the name of "a higherpower"????
NEVER have I ever thought not one moment about me taking my own life in the name of the "Lord and Savior" that protects and saves me. Not only would I disobey one commandment, but I would disobey the very fiber He made me from!!!
It makes me literally SICK to watch the news be filled with all of the "junk" about a new President!!!! Yes, the upcoming election is important to all of us in the USA!! BUT, at this moment it is NOT above the sick, the dying, the starving, those running for their lives from war, killers, that kill not just men, but women, children - it matters NOT who it is, they kill them... People are literally running from fires that are engulfing their homes, and from flood waters that are washing away their lives...
I "rarely" discuss politics... I feel ALL are entitled to their own views... BUT, I sure as heck right now am not concerned what so ever about a Hillary Clinton "private server" and emails that probably don't have a darned thing to do with her being a Nation Changing President!!!! But, I can tell you, if we allow that LOUD MOUTHED "satan tongued" Trump to be over us as a "Leader" of the FREE WORLD... well he will have us blown up within the first year by someone he has opened his foul mouth to in some other nation, and makes them hate us even more than they already do....
And whether you are a "Republican", "Democrat", OLD, YOUNG, MIDDLE AGED, MALE, FEMALE... or of any race... NONE of that matters either!!!! I want the President to be someone who can take the reigns and reign in CONGRESS... and STOP CONGRESS from being a bunch of Kindergarten's and bickering, mud slinging, name calling, and just being plain bull headed and only want what is best" for them... WE "elect" people that are supposed to take care of our nation.... what email they sent 4 years ago, to a friend in Florida, who cares?????
But, you can bet, whether a Congress Person, a banker, lawyer, doctor, or Indian Chief, MOST are OUT for the OWN GAIN!!! GREED, CORRUPTION, LIABLE, SLANDER... all bull... which has gotten us no where over the last 16 or MORE years, but deeper in debt, while the "few" with that "power" get richer and the middle class struggle to keep a job, put food on the table and a home over their families heads....
So, rather than going on and on and on.... about who said what to whom on their "Blueberry - Blackberry - Raspberry" or these "Smart phones" that are surely "dumb" to me, I don't care.... ALL of us fall short of perfection... ALL... and SOME of us have never even thought to strive for being "perfect" - Yet, we try to be the moral, upstanding, truthful, loyal, and honest as we can be....
So, to HECK with 16 or whatever "Republican Nominees" - ridiculous - and thank goodness PERRY quit!!!! Good news for the nation.. and now TX is rid of him also...
And whomever can stand up, and tell ME, how they intend to try and turn this country around... our stock market reeling - one day up and the other the "worst" down in history... people's life savings not making a dime, and Social Security and Medicare... OH HELL that is another BOOK, not just a post... someday, after I finish including my thoughts on those, my book may be much THICKER than anyone thought I could ever write.....
So, when you bow your heads this evening at a meal, or with your kids as they go to sleep - or if you do as the Lord tells us, "hide in your closet" and pray... then you have a direct line to WHOM can turn this country around.....
You can say that this involves "physical", illness, pain, destruction, devastation and moreover, I am totally DISGUSTED with many of us, and I must say I include myself in that "us"....
ow the "news" can sit around and bring about MORE "crap" about "email servers, emails that are eons old, Trump and his debauchery,, along with each and every other "Nominee" - whether "Red" or "Blue" is beyond and above what I comprehend!!!
When just here in our own nation, we have thousands upon thousands of acres of precious land, homes, trees, earth, that first has suffered immeasurable damage from drought, and then to be completed brought down to its knees with wildfires above and beyond any one's imagination act as if it is just another day. W have "EVIL" doers on one of our main Highways through Arizona, SHOOTING arbitrarily at any and every thing they in their warped minds they see.
What about all of the flooding, the horrible and completed demolishing of many of our states in the past months with water, MUCH, MUCH MORE water, drowning people, again demolishing everything in its path, leaving people once again homeless, without jobs, and the loss of everything that they ever worked for and cherish.
The EVIL out there that lurks in movie theaters, in Malls, on Highways, on our own city streets, that think no more about shooting people and killing them than they do breathing air... the morality, the greed, the power hungry, the people that have NO care for "human life"... and what makes that even worse, is OUR YOUNG PEOPLE... are many of these horrid, evil filled "humans". How can someone so very young get to be so very wicked in a few short years of life?
How can the "educated" ones that have knowledge at their fingertips, families that love them, take off to some "foreign" nation that literally HATES all Americans, and "join forces" with those who intend to not just harm us, but kill us, and then they strap on "bombs", blowing themselves up, in the name of "a higherpower"????
NEVER have I ever thought not one moment about me taking my own life in the name of the "Lord and Savior" that protects and saves me. Not only would I disobey one commandment, but I would disobey the very fiber He made me from!!!
It makes me literally SICK to watch the news be filled with all of the "junk" about a new President!!!! Yes, the upcoming election is important to all of us in the USA!! BUT, at this moment it is NOT above the sick, the dying, the starving, those running for their lives from war, killers, that kill not just men, but women, children - it matters NOT who it is, they kill them... People are literally running from fires that are engulfing their homes, and from flood waters that are washing away their lives...
I "rarely" discuss politics... I feel ALL are entitled to their own views... BUT, I sure as heck right now am not concerned what so ever about a Hillary Clinton "private server" and emails that probably don't have a darned thing to do with her being a Nation Changing President!!!! But, I can tell you, if we allow that LOUD MOUTHED "satan tongued" Trump to be over us as a "Leader" of the FREE WORLD... well he will have us blown up within the first year by someone he has opened his foul mouth to in some other nation, and makes them hate us even more than they already do....
And whether you are a "Republican", "Democrat", OLD, YOUNG, MIDDLE AGED, MALE, FEMALE... or of any race... NONE of that matters either!!!! I want the President to be someone who can take the reigns and reign in CONGRESS... and STOP CONGRESS from being a bunch of Kindergarten's and bickering, mud slinging, name calling, and just being plain bull headed and only want what is best" for them... WE "elect" people that are supposed to take care of our nation.... what email they sent 4 years ago, to a friend in Florida, who cares?????
But, you can bet, whether a Congress Person, a banker, lawyer, doctor, or Indian Chief, MOST are OUT for the OWN GAIN!!! GREED, CORRUPTION, LIABLE, SLANDER... all bull... which has gotten us no where over the last 16 or MORE years, but deeper in debt, while the "few" with that "power" get richer and the middle class struggle to keep a job, put food on the table and a home over their families heads....
So, rather than going on and on and on.... about who said what to whom on their "Blueberry - Blackberry - Raspberry" or these "Smart phones" that are surely "dumb" to me, I don't care.... ALL of us fall short of perfection... ALL... and SOME of us have never even thought to strive for being "perfect" - Yet, we try to be the moral, upstanding, truthful, loyal, and honest as we can be....
So, to HECK with 16 or whatever "Republican Nominees" - ridiculous - and thank goodness PERRY quit!!!! Good news for the nation.. and now TX is rid of him also...
And whomever can stand up, and tell ME, how they intend to try and turn this country around... our stock market reeling - one day up and the other the "worst" down in history... people's life savings not making a dime, and Social Security and Medicare... OH HELL that is another BOOK, not just a post... someday, after I finish including my thoughts on those, my book may be much THICKER than anyone thought I could ever write.....
So, when you bow your heads this evening at a meal, or with your kids as they go to sleep - or if you do as the Lord tells us, "hide in your closet" and pray... then you have a direct line to WHOM can turn this country around.....
Thoughts as I ponder my own Health, Lupus, RA, Sjogren's, those that "harm" us, those that have all disregard for human life.. the nation and world in vast and deep trouble...
I put up a couple of new pics earlier on Facebook and I wanted to post them here, and then write about some stuff I've been wanting to write about... lots to do with my own life journey, this river of all too often the "unknown"... we ... none of us know what the next moment holds... we are not meant to... thus each breath leads to another "surprise" of life... this below is about dealing with illnesses, chronic in nature... Lupus, RA, Heart problems, Sjogrens' the severe pain of them, they tend to try and consume your life, mind, heart and soul... and how then a relationship, although we never know either can literally "suck" the life out of you... before you even know what has happened.... So, I wish each of you, a good life, be safe, love one another every day, every moment... do NOT let a moment pass by that you don't try and make someone else, yourself, or even your "four legged" friends... (I speak of my pups) that you don't love them, and tell them often...
We never know if we will be shot going down an Interstate, or bombed and terrorized in a church, place to eat, on a job.,, in a market... WE have MANY, MANY Horrible people that spend their life "killing others" and never bat an eye doing it... it is all around, and we hear, read and see is way too much... our NATION and OUR WORLD are in much need of PRAYER, PEACE, AND HARMONY!!! ... YET, too many do not have any regard for human life... I just don't and cannot fathom that they do that in the name of their "god" or whomever they worship....
After the SEVERAL what feels like MONTHS the past weeks... I needed to hear something "positive" I have been so totally frustrated with "life" in general... mainly of course illnesses and medical issues. I am still not "completely convinced about this leg being "not infected... but the surgeon I went to has been practicing for many, many years... so I must have faith that he knows what he is looking at. I learned a few things from him by asking questions, especially about MRSA, and what to look for and so on. I am not sure why that even though this lump was "abscessed" is it not "grow" anything. You would assume it being "infected, which is what I "assume" abscess is, that there would be some type of staph, strep, or something that would grow out of that culture. He took two... because I actually had two pockets of abscess from what he said, one not very deep, but the other quite deep into the thigh. I am still taking extremely good care of it, and not going anywhere without it covered and I am still actually covering it with gauze. For one, with the two pups, and then jumping to see me, especially when I sit down in the evenings on the sofa to watch a = movie with the, they both are pawing at me, or putting their heads on my legs etc.. vying for my attention,.... talk about UNCONDITIONAL LOVE!!! That is what I get from Bub's and Tazzy.... they love me in spite of being ill so much, being not able to sit with them every moment of the day LOL, if I have my makeup on or not, no matter how I am dressed... they love me... too bad I never found a "spouse" that was so committed to me... Yes, I did say that...I am so "fed up" at the moment with people that "commit" themselves supposedly 110% and vow to be there no matter what, yet when the tough times roll around, guess what... GONE... on 60 SECONDS! I was totally "committed" to each and every relationship where I said and vowed to do that. But, as we know it takes TWO!!! I could not do "all the work" and the other party not want to work at it at all... and in fact at the moment I am quite livid in the fact, that I've been deceived, lied to, cheated on, and you name it, and I know that even my neighbors who have known me now 8 years must have been "told" I was the problem!!! They barely even "look" at me... and they were here all the time "before" the other party left for Seattle... so I can't help but think someone said things that make them think I "threw" it all away etc... when I never did such... but after trying to work on it for almost 13 YEARS... between my own health, my Mom, and ALL that I need to do... things that I gave up, in order to make a relationship last, I am SICK of GIVING, and someone else doing all of the TAKING!!!! Plus I am TOO OLD and TOO much water has flown under the bridge, that I shall NEVER "beg" anyone to be with me, or stay, and so forth... I am too disgusted with all of it, to even truly have the stamina to "fight" for someone to be here. I am just as well off, even though I am lonely at times, the pups as I said love me, no matter what... and I've vowed to NEVER again get into any "long term" anything... And no one say "Oh, you will feel differently later..." NO! I won't... I am going to spend the time that I "wasted" on committing to someone who just took full advantage of my tenacity... and put all of that COMMTMENT back into getting myself as well as possible, writing my (or may I say finishing") my 3rd book and getting it published, along with more much more energy into my blog... which is doing fairly well... and into my activist and advocacy work... those things are where my true nature, my passion, my love, and what I feel my life is truly about... and no more will I forego those things to try and make someone else happy.. if they cannot be happy themselves, then I certainly can't make them happy .... I am off to post this on my blog... do a few things I've got to catch up on... I spent yesterday outside a great deal... washed and got most of my car waxed... and got some of the dead limbs and trees down that my neighbor "left" rather than take down as he said he would before he built that UGLY HUGE MONSTROUS WHAT IS SUPPOSED TO BE A GARAGE... it is bigger than my house! So, I've got lots of things I have to do for my home and I am already too vested in it to not finish what I began... so as the next moment, hour, day, week, and hopefully YEARS flow... my hopes are to "do" exactly what I feel my true "calling and purpose" here is.....
Friday, September 11, 2015
Reflection - Where were YOU on that fateful day or Horror??? 9/11 changed all of our lives and this world forevermore...
Gosh and 2001 had already proven to be one of the most hardest years
of my life. On the 8th day of January 2001, I had a heart attack. That
was about 10 AFTER the man I was married to for almost 18 YEARS walked
in on Christmas Day 2000 ( he had been gone like usual and I had no clue
where)... So, the kids, and some of their friends, were at the house
for Christmas Day. When he showed up, he "threw' a present at me, said
he was leaving, and probably would not be back, got some clothes and
left. Everyone was gone that morning that I drove myself 20 miles to the
closest ER. I had been not feeling well, and having some chest pain for
the 3 days prior. I thought I may have bronchitis, so I called my
doctor at the time. He told me to get to the nearest ER immediately.
Well, I was "chatting" with a dear friend who lives in Malta, and she
told me if I did not either call the ambulance or get myself to the ER,
she was going to call from Malta, here to TX, where I was and have the
ambulance come and get me herself. So, I promised her I would go, and
thus got up and went there. As I drove, I put on my flashers, but did
not want to drive too fast. I had no clue what my might while I was
driving. But, I made it to the ER, walked in and told them about the
chest pains, and they immediately and swiftly got me in a room, began an
IV, gave me an aspirin, and started doing an EKG, blood tests etc...
they also came in and gave me medication into the IV, that cost 2,500.00
for one dose... a bit later a doctor walked in and he told me that I
had an MI, and that the initial blood work showed I could have massive
damage to the heart muscle. I still had not called anyone to tell them.
But, they knew me there at the hospital because I had worked as a
Patient Rep there for 6 years, and one of the nurses told another friend
of mine who was still there in the business office. She in turn called
my parents, etc. They wanted to transfer me to Baylor in Dallas. But,
they had to stabilize me first before they could. So, I was put in the
ICU unit... I found out that $2,500.00 injection probably saved my
life... it was one of the newer "clot busters" & it basically
stopped the heart attack and prevented further damage to my heart. But,
it was still unclear until they got me to Baylor via ambulance the next
day. I HATE ambulances and hope I never have to ride in one again. I had
already done that twice, and then after that I actually have been once
again in an ambulance I think now 3 three or so... Anyway, as soon as I
was put in a room in the cardiac unit there at Baylor, they began tests
to see what was going on, how much damage, if I needed stents and so
forth. So, they did an angiogram, which they put an incision right
almost at the bend of my thigh and pelvis, ran wires up to my heart,
where they could see what was going on.... well, I was of course awake,
maybe a bit sedated but not much, and the doctor said something like OMG
or something. I thought he had found something horrible, but he saw one
of my main arteries going into my heart spasm... thus they felt that
may be a part of the factor to the heart attack I had at 40!!! From
there they discovered that the damage was minimal due to that injection,
which was why at first the enzymes in my blood were so high... it
stopped the damage thus allowed those enzymes to be rather extreme... I
went home 7 days later, with ONE thing that shall always stick in my
mind. I saw my cardiologist about 2 weeks later. He told me either I
CHANGE everything in my life and do whatever it takes to get away out of
the grips of whom was making me sick and hurting me... mentally,
physically and emotionally, OR he would kill me one way or the other...
so I went home, got myself together, packed what little I could after my
6 week follow up and headed for Lancaster CA. I had made a couple of
friends there via the internet... and Aimee told me I could come stay
with her and her Father, get a job, and I could stay there even after
she moved into her apartment and have her room at her Dad's home. So, I
did. I got busy trying to find a job... in fact for a couple of weeks,
my "job" was to find a job. And I did. I was supposed to start one, and
it got delayed because that company did not have their equipment,
computers and so forth ready yet. So, I interviewed for another, and was
to go to work that next week. In the meantime the place that helped me
find the job, had a "temporary" job in a warehouse close to where I had
been staying. I could work that for a couple of shifts until I went to
work that Saturday at my permanent job. Well, in the process of cleaning
up shelves and so forth in this HUGE warehouse, I knelt down on my "bad
left knee" and I felt it immediately. I had torn more stuff and damaged
it. I had to leave the pain was so bad, and by the next morning it was
swollen so much I could barely bend it... But, I worked that Saturday at
the new job, loved it, and my thoughts were to stay work long enough to
get on insurance, and have the knee seen about. But as that day wore
on, my knee got worse. That Sunday, I made the difficult decision and
had no choice but to get in the car with my stuff and come back to
Texas. I was still covered by the insurance that paid for the heart
attack. I got back here and within a week had seen an Orthopedic
Surgeon, had an MRI, and was having knee surgery. From there I got
"better" and went down to Austin to find a job. A dear friend of Aimee's
lived in Austin, so I was staying with her and her boyfriend... I had
found a job, and while I was there, I exercised, walked, and did house
work and so forth for her, and got in much better shape physically. So,
my plan was to actually move much closer to my parents and to the kids,
so I decided Austin was just not where I needed to be... so on September
11th, 2001 I was in Ft. Worth TX, heard something on the radio, and
turned the TV on to watch the 2nd plane hit the 2nd World Trade Center
Tower... after that everything was just nuts.... I watched for hours and
hours that horror unfold... I could not take my eyes off the TV... and I
called my Mom and Dad, because at the moment none of us knew exactly
what could happen... so I tried to get hold of everyone to tell them I
was safe, and check on them. I made a brief stop back in Ennis, and then
is when my life entirely changed for the better. In the back of my
mind, was that voice of my Cardiologist, get out and away from "him" -
speaking of my now ex-husband or he is going to hurt you in one way or
the other... thus on October 31st, Halloween Night, 2001 i got off the
bus in Seattle WA, which totally gave me a new life, new job, new
friends, and I was "free" of the abuse and horror that I had been
through for years in TX. I filed for a divorce before I left TX, then
flew back later to "seal" it in front of the judge. For 5 years there in
Seattle, I cannot begin to tell you how much I changed, I grew
stronger, I had more faith in myself, I made my own decisions, I loved
my job as an Apartment Manager, and even bought my 1st car, that was my
own. From there the story goes on, moving back to TX 5 years later due
to needing to be here for my Mom and kids... but to this day, I shiver
at what I saw on that TV, and witnessed the bravery of many who risked
their lives to save others.... I am sure for many of us, there is a deep
scar in our hearts, that still remains after that day of horror... and
now we live in a MUCH different world for sure.... we have to be
diligent everywhere, from church, to a Mall, to our schools, to even a
Movie Theater.... to just being out on the street or highways driving.
Since 9/11... our lives are lived around almost an "untold" and
"unspoken" deep seeded fear, that anywhere we go or are, we could be a
target for someone who hates mankind... the terrorists are not just in
New York, not just overseas, but they are our next door neighbors, a
family member, or that stranger in a car that may drive by.... that is
right our children will never know and their children... that "freedom"
is not what it used to be... It is sad and now once again this nation
and just about every nation in the world have "turmoil", war, death,
starvation, droughts, terrorists, people that "prey" on their own
kind... the reflection in the "mirror" of life is no more and never will
be again.... Thanks Jason Harber what you said and what Amanda Batson-
Matheny said along with many of us will reflect on today... and just how
much we have changed as "humans" of how we feel we must "not trust" as
much, we can find ourselves living in a "fear" and may not even realize
it... The Memory of the Loss of so many innocent lives will always
remain, and what those terrorists took was something from ALL of us...
and left us with fear.... my thoughts, prayers, and in Remembrance of
ALL who "lost" - I pray that no more will we have to endure such
horror....
Thursday, September 10, 2015
Exciting News for IFAA - -FINALIST FOR INNOVATION AWARD! "Celgene" Innovation Awards
HOORAY FOR IFAA-FINALIST FOR INNOVATION AWARD!
The International Foundation for Autoimmune Arthritis is a FINALIST in the 2015 Celgene Innovation Impact Awards: “Unleashing the Patient Voice in Research”, with awards up to $100,000 for our submitted project idea!
IFAA is dedicated to bridging YOU with scientists so that OUR needs can be heard and then turned into real research projects. We are problem solvers, it’s what we do. Hopefully we are able to push this to the end and bring home one of the awards! Autoimmune Arthritis patients- it’s our time to be heard!
Congratulations to all the finalists:
1. Aplastic Anemia & MDS International Foundation
2. Cancer Support Community
3. Crohn’s & Colitis Foundation of America
4. FORCE – Facing Our Risk of Cancer Empowered
5. Foundation for Sarcoidosis Research
6. International Foundation for Autoimmune Arthritis
7. MDS Foundation
8. National Psoriasis Foundation
9. Research Advocacy Network
10. Pancreatic Cancer Action Network
The International Foundation for Autoimmune Arthritis is a FINALIST in the 2015 Celgene Innovation Impact Awards: “Unleashing the Patient Voice in Research”, with awards up to $100,000 for our submitted project idea!
IFAA is dedicated to bridging YOU with scientists so that OUR needs can be heard and then turned into real research projects. We are problem solvers, it’s what we do. Hopefully we are able to push this to the end and bring home one of the awards! Autoimmune Arthritis patients- it’s our time to be heard!
Congratulations to all the finalists:
1. Aplastic Anemia & MDS International Foundation
2. Cancer Support Community
3. Crohn’s & Colitis Foundation of America
4. FORCE – Facing Our Risk of Cancer Empowered
5. Foundation for Sarcoidosis Research
6. International Foundation for Autoimmune Arthritis
7. MDS Foundation
8. National Psoriasis Foundation
9. Research Advocacy Network
10. Pancreatic Cancer Action Network
Wednesday, September 9, 2015
IFAA, Tiffany and the Entire Dedicated Group with the International Autoimmune Arthritis Foundation - Thank you!
I had a very pleasant surprise at my door step Tuesday after the holiday
weekend! My “regular” mail had already came. But, later in the
afternoon, I stepped out on my front porch to see a large package with
my name on it!! At first, I thought it was the “blue ribbons” that I am
waiting on for pain awareness month. They have not sent them yet… BUT,
IT was ALL KINDS OF AWESOME STUFF FROM THE IFAA AND TIFFANY! I was so
thrilled when I opened it… an awesome very sturdy reusable bag,
along with others that are also perfect to take to the market from the
WAAD 14! I also had a nice pen with the IFFF Logo on it, and a huge book
that came from the Autoimmune Summit 2015 - with all of the data from
research and so forth they discussed at the Summit in New York! smile emoticon
I am really enjoying lots of the data in there… extremely interesting
to me… anyway, I will get a better photo up later. I had to take this
one with my “web cam”. I am charging the battery on my good digital
camera. So, I will make more when it is charged. Again, Thanks to IFAA,
Tiffany and the entire gang… what an awesome job all of you do…. I hope
to soon participate more. Due to all of the “circumstances” between my
own health, My Mom’s health, then all of the other personal “agenda”
that I HOPE to have basically over with in October… my hope is to get
back on tract with my activism, advocacy, my own research, and doing
more writing on my book, as well as working even more on my blog… by the
way my blog seems to be “getting more attention”… and I am thrilled
about that…
To Learn more about IFAA, want to join in their Advocacy team and more the URL IS:
To Learn more about IFAA, want to join in their Advocacy team and more the URL IS:
http://www.ifautoimmunearthritis.org/
Tuesday, September 8, 2015
The "NEVER ENDING" Saga of Rhia, Autoimmune illnesses, cellulitis, abscesses, and feeling the pain, disgust, frustration for others like myself that seem to NEVER get a break
This is a post I sent to a friend on Facebook... she also is just having one hell u va time, dealing with "crap", illnesses, and all that entails when you feel life NEVER gives you a break! I realize some of it I've already posted, but believe me... I feel it is totally worth repetition... so others KNOW they are NOT alone!
I SO, SO, SO can empathize with you and how you feel. It has been so much the same for myself. Between the already issues with Lupus, RA, and so forth, then the accident last year in March that my husband was in, now he has left and moved back to WA state.. we are filing for a divorce and honestly I am NOT sure to this moment WHY? Then I need lower back surgery, then my Mom in the midst of me finding out what was wrong with my hips and legs, which was my back, she comes down with a severe hip issue, that also turns out to be her lumbar spine also. She is 80 years old, and they do NOT even want to discuss surgery on her...but they are trying with medication, PT and supposed to do some epidural injections on her. About the time we got those scheduled her last living sibling, a younger sister, passed away of a rare stomach cancer, she had been fighting for a couple of years, then BOTH of us come down with some kind of stomach virus, & I spent several weeks of it seeming to come and go, and even got ill Sunday morning...I was so upset, I felt "fine" was dressed, and was about to walk out the door, and my stomach felt "odd" and sure enough, I almost did not make it to that bathroom and was sick to my stomach again, out of the blue... then I have been dealing with a "lump" on my mid left thigh now for about 9 weeks... my PCP thought it was cellulitis, and of course with my immune system being so compromised, he immediately put me on TWO antibiotics, which helped some, but after 3 ROUNDS of them, 7 days each, he wanted me to have a surgeon look at it, and cut it out...well, I had a hard time finding a surgeon close enough that took my insurance, finally did, but he could not see me for over a week! So, all of a sudden this "lump" that showed no signs of an outside infection... has not been red, warm, or appearing to be infected on the outside, but a week before I was to see the surgeon I woke up to it being very red, warm, and appeared to almost be trying to burst open... so I quickly called mt PCP and told him... so he put me on another round of the antibiotics until I could see the surgeon. Well by the time I saw the surgeon which was last Friday, it has abscessed inside, and he had to "CUT" it open, and let all of the infection out of it! He also sent some to be cultured, and I must have had "two layers" of infection. One kind of shallow, but another much deeper. Now he did this in his office, just injecting lidocaine in it, which hurt like hell and burned worse...and I am "tough"... nothing usually bothers me... but then I had to take the bandages off twice daily, after getting home, and "clean it out" with Q-tips and peroxide... when I took the bandage off the first time on Saturday, OMG I have a HOLE in my thigh deep to it almost feels like it is to my bone, and wide... like 2 inches deep and that wide... I almost could not do it, but I knew I had to.. so I did that and then finally yesterday, it was not quite as painful so I took a shower and used antibacterial dial liquid body wash which I had already been using, and he said to allow the soap and water to get into it, and clean it out... I did, and it hurt some but not all that bad... but then this morning, I began to take off the bandage and it again looked awful to me... it is still draining a bit... but I see him tomorrow thank goodness... now he did not address the "other lump" on my right thigh, almost in the same spot as this first one. It came up after my PCP began me on antibiotics, but I never said anything about it, thinking that medication would take care of it also... well it is still there, a bit larger, and I fear it may be the same thing. I had told the surgeon's nurse Friday, but I guess he forgot about that once he was working on this other one. So, I've got to point it out to him... it is just like the other one... it shows no "outside" appearance of an infection, it is just a lump under the skin.... to top that off my Rheumy wanted to put me on a new RA Medication, but before we could change I had to do a whole entourage of blood work, TB testing, Hepatitis, etc... well all was "okay
accept the TB test... that particular test has to be done just a few hours after the blood is drawn or it can come back not accurate... so mine came be "indecisive"... so I needed a damned chest Xray to show the test was just off... well I could not again find anyone close that took this stupid insurance, so I finally was just going to pay our Urgent care to have it done. Well, the order got misplaced that my Rheumy sent them..then due to this lump, my Mom, my Aunt passing away, I got delayed in doing the X-ray... so when I went out to have it done last week, they had NO order, or they just could not find it, and when I called and had my Rheumy fax it, it was for 2 views instead of one... so I did not want to have to pay double if it was not necessary, so I had to get hold of my Rheumy... and have them fax a new order for one view... I FINALLY got that done, and now due to the lump, the infection, the delay of the Xray... I've not had any RA meds in like 9 weeks or more!!! So, my RA, is so bad.. And within all of that is even more crap that has and is happening... and I am just frustrated, upset, disgusted, mad, and all the things you feel... it is like some of us NEVER get a break... EVERYTHING in my life has always been "complicated".... and it is just too old... for sure....there are days I want to crawl under my bed to never return.... and between all of that... my Pug has also had stomach problems and been sick to her stomach off and on also....
Monday, September 7, 2015
My Beautiful Daughter, Her awesome Husband and the two Grandsons, family... and also Heather a Senior this year...
I've got to share these pics with you! My daughter, Amanda, and her husband and their two sons, and also they have a daughter who graduates this school year... I have an awesome daughter, an Incredible Son In Law, and three smart and witty Grandkids... fishing, outdoors, hunting, sports, the lake... you name it they all love it!!!
LOL!!! AND YES, MY DAUGHTER CAN "ROCK" A CAMO SHIRT AND BLACK LACE SHORTS!!!! ;)
They have a blast down by Corpus Christi, at one of the lakes they go to, and all of them love camping, fishing, hunting, and kind of outside sport... I am so thrilled to have them as an awesome "team" as far as my family!
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo...
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I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...