Showing posts with label arthritic autoimmune arthritis. Show all posts
Showing posts with label arthritic autoimmune arthritis. Show all posts

Sunday, November 15, 2015

Medicare Advantage Plans, Kidney Stones, Pain, and "pain" from life and all we know... trying to find that positive light admist all the negative's....

Thank you so much Tracie L Carlson and Lourdes Villegas-Anaya !!!!   I so appreciate the kind words, and giving me the courage to try and move past all of the nightmare's life can pitch at us, in any given moment. None of us are "immune" to life's way of trying to take us down further each time things happen. Especially when SO MANY happen all at ONCE! I also know that I am NOT the only person on this Earth with a world of problems, and a universe of pain and suffering. I have tried to find a way back to the "light" in my life... although not an easy task. In fact, you are both correct, a great deal of putting up the tree so early, was so that myself and Bub's can find some warmth and spirit since this nation and world seem to be so totally cold hearted and full of so much indignation, terror, and things we usually imagine to only happen far away from us. Yet, that is not true. Whether we are suffering from illnesses and pain, or heart break from those we thought never would cause it, or the loss of someone so special, like Tazz, and my Dad who passed away 10 years ago, and I as I say the "loss" of "oneself" which when health deteriorates so badly, and chronically, it is so very easy to "lose" who you thought you were... we all change and grow, just a fact of age, wisdom (for some), and the way our lives are meant to be... but when you feel as if you have lost your very core of spirit, you inner most power, your ability to see the world with different eyes, trying to not become bitter, and full of loathing, all too often of your own body, and mind.. the fight is not a simple one, nor is being alone to deal with it ever easy either. Even now for me, being in a room filled with people I feel totally alone, and misunderstood. Of course with Tazzy being a Christmas present and was born about the time she passed away 14 years ago, has made the loss of my one fur-kid even more painful. Thank goodness Bub's seems to be feeling better, and after getting his rabies vaccine and getting those terribly long nails trimmed, and without having to muzzle him, :):) I think his feet maybe a bit sore... now he cries for me to help him on the sofa. But, I also realized that he is almost 6 years old! My papers from the Vet said he was 5 years and 9 months old... which I knew he was pretty close to being between 5 and 6 but time has flown by so fast. I look at the pics of him, when I got him home, he was so little, he had a place on my desk he laid... and Tazz the same way, she was so tiny, I could hold her in one hand when we first brought her home... guess that is why that seems like yesterday, and how hard it has been for me to except her passing away.... but I found her and Bub's ornaments, I had bought them over the past 4 or 5 years in the chest yesterday, and they hang on the tree along with Tazzy underneath it... she can too "see" the warmth and love she still has from her home..... And the Christmas Letter... yes I am sure I will find something positive to say, but in that, I will also have to tell the family and friends about all that has happened in the past year. That is why I write the letter, to catch up to family, we do not get to see or talk with very often. So, those letters remain a lifeline from our home to theirs, and from their home to ours. I still have so much to get done... I have to make a decision about my insurance and Mom's - and that is not an easy choice... I came to find out an interesting fact about Medicare Advantage Plans - OUR doctors are NOT the ones who "take" or do not take these types of plans at all. In fact, they have no say so in it.... ONLY the "insurance" companies make that choice... They "choose" whom they will be an in-network provider, and the physicians cannot say no, but they can't have the plans either, unless the insurance companies themselves "choose" them... Now I understand why my hospital is not on the policy we have now, nor some other providers. Come to find out they all work that way... I know I was totally dismayed that NO HOSPITAL within 40 miles of us took the insurance we currently have... that seemed so ridiculous! Well, NOT the hospital's fault... the insurance makes that decision!!!! Now this is mainly for Medicare Advantage Plans specifically, and I do not think it effects like Medi-Gap policies and so forth... thus just because online the companies may tell us that "this doctor" will be covered, by Jan 1st, they can change their minds and NOT cover a doctor we need to see... Talk about a mixed up mess!!! Our dear government at work... I can guarantee you, THE CONGRESS has a huge say over these plans specifically, and they make it as hard as possible, since many of us on them, are below the age of 65, because we are on disability, not "retirement" age yet... Anyway, talk about one messed up situation.... I was all set to go back to Humana for 2016, then I noticed our PCP was not listed as a network provider... thus I asked Thursday while I was there, and come to find out no, but it is because the "insurance" is not "allowing" them to be a in-network provider, not that they do not want to!!! It made me so furious... Humana COVERS our hospitals and so forth BUT not my PCP! And I have no guarantee after Jan 1st, they will "cover" the others they say they will online... it is a huge mess... and for me to try and get a "Medi-gap" policy would be well over 500.00 a MONTH or more... so it is no "win-win" for anyone... except the insurance companies themselves... and "United HealthCare" Secure Horizons SPONSORED BY AARP!!! is the worst! I have had nothing but problems with them all year long, plus as I said they do not cover our local hospital, my Rheumatologist, our Urgent Care Center, which seems totally stupid, and so forth.... anyway, so that is just one more thorn in my side to deal with.... along with all of the rest... again thanks so much, each of you... I did not make it to church again this morning, but I tried to go see Mom yesterday, and by the time I was in the car, I got sick to my stomach, and had to come back in the house, and let her know there was no way I felt like going over... same way today... my stomach is still "not right" but I am in so much pain, again I have to wonder if I don't have a kidney stone... the past two mornings, around 3AM, I awake to horrible and severe lower back, lower abdominal, pain... and down the fronts of my legs... which is usually how I know it is kidney stones... the leg pain, but down my front thighs.,,

Wednesday, November 11, 2015

A Wreck, that has totally "wrecked" lives and where is the justice???? Now I am no longer "stifled" and can say as I please... Autoimmune Illnesses & the Horror of Life and Dismay

By the way, just got home from Mom's Kidney sonogram, and I FINALLY got a call from my PAIN DOC'S office! My pain pump IS APPROVED, thank goodness, AND they were going to do surgery this coming Friday, BUT due of course to the abscesses, I have to wait, and get a "clearance" from my PCP... and I have to call them to let them know I do not think these antibiotics are working.... and then tell them they HAVE to GET ME WELL ASAP so I can get this surgery over with! Wish me luck, and still "no word" on the other item yet....
and on a FURTHER DISTRESSING NOTE (to say the least) AFTER 20 MONTHS of all we went through, a marriage destroyed, and several lives totally destroyed in so many ways, we LOST! They "ruled" that "neither" our car, NOR the truck driver were "at fault".... needless to say, yes, that ends it, but it sure as hell does not help ALL of the other issues that went along with it. I will say more, but right now I am so upset and disbelief - so I shall tell more later...



I have said from the very beginning, that "something smelled rotten" about this entire thing.... for one these 2 "so-called" witnesses, I've seen where the accident happened, and unless someone was staring at that piece of I-45 all the time, they would never see anything... AND I also feel that both the owner and driver LIED on the stand, in their depositions, and more... I have no way to prove it, and probably never will, but I also had a feeling when I was there Friday, that the "jury" selection was really "biased" - over 70% were the same "nationality" as the driver and owner, and everyone else at that company for that matter.... I am still in shock to say the least, along with of course Jim, my Mom, my daughter... and she KNOWS all of the issues about a CDL License and rules and restrictions of drivers etc... her husband works for an oil field company, and a couple of their drivers have been in accidents, and she said NO WAY no HOW would that business gotten away with this... lots of stuff just not "right"... but as I said... nothing to do but try and move forward.... what a nightmare, over and over, living it every single day since March 26th 2014 and how much is destroyed, lives, a marriage, and a great deal more than that. BUT, it is hard to get something "fair and just" IF another side is playing dirty pool.... and now I can say what the heck I please...

I've felt this from almost the very first moment that we took this and decided to file a suit against them. I "watched" each and every tiny moment of how this company "acted" - how they from the 1st "denied" any wrong doing, and yet admitted he was ON A CELL PHONE, a car in front of him, that had time to get out of the way, and everyone, including experts, and in fact their own "expert" in re-construction of the accident admitted he should have SEEN our car, no matter what, and being a truck driver, if he had his eyes and mind of the road, he had more than plenty of time to stop! Even before Jim was out of surgery in those first hours, I spoke with my insurance adjuster, she she told me the two guys in the Tahoe, had been known for appearing to get hit, thus they cause the accident, but claim otherwise and had been PAID several times by different insurance companies that would "settle" just to shut them up... In fact, the trauma doctor that I spoke with while still in the lobby of the hotel there in Washington DC, when I 1st learned of the accident said two things to me, before he even began telling me about the extent of Jim's injuries, he said JIM WAS NOT AT FAULT AT ALL, HE WAS NOT SPEEDING, and he was driving fine... that an 18 wheel tractor trailer hit him from behind and basically "ran over" our car! Of course due to the fact, I was told this on the phone by the doctor, and my insurance agent had told me this about the guys in the Tahoe, it was "not
admissible" in court, because it would be considered "hear say".... in fact those two tried to get money out of my insurance company, and the woman there basically told them to take a flying leap... they had proof of them causing this type of situation in the past... Also they basically tried to say that my car, the Hyundai was not "road worthy" and that the hood flew up which began the accident... I know for a FACT, MY CAR WAS COMPLETELY ROAD WORTHY! The Monday morning just before Jim drove me to the airport 70 miles away, and back home. The hood on my car, was extremely difficult to even open. The hood was very heavy for a small car, and I had made that statement on several occasions... and it had a "double locking system"... and that was to keep it from being able to "fly up"... you had to unlock the first one, then push further into it, to "open" it, and same way closing... once I closed that hood, it was as secure as any hood could be.... I will always remain stating that they all "flat lied"... that they "paid off witnesses" - these people standing around in their "yards" on the side of I-45 coming into Dallas, and 2 of them "happened" to have witnessed this so called hood issue... I am sorry but that just does NOT add up.... the odds of that are slim to none... and I also feel the jury was "biased"... as I had said above, the company was owned by the same nationality of people as the driver, who basically could NOT even speak English... and way over HALF of the jury was the same nationality... now if that is not biased, I don't know what is... due to my own health issues, these abscesses on both thighs, the pain pump being stalled...and so forth, unfortunately, I was not there to even see the jury picked.. and I was only there briefly on Friday to give my testimony, and then I left and came back home.... I really was not supposed to go then, but my doctors told me if I went, testified, and came home, then it would probably be okay, thus that is what I did... I SAW the HOOD LATCH MYSELF at the impound the net morning, when my son and I went to see the car, and take pictures.. and that LATCH was still fine and in fact, they had pulled the wrinkle out of it enough, they had it "latched" down, I guess the tow truck driver did that... and I took pics of it.. but at the time, I did not realize that I should have taken more photo's and much closer to the latch, yet then I had no idea that anyone thought the hood flew up before the car was hit.... or I would have made double sure, I had more information, and then the Dallas Impound "sold" the car... and that was before we had retained an attorney, thus the hood had basically been removed, and the motor taken out before our attorney found it... fortunately it had not been crushed yet, but still all of that being taken off, did not help, they had removed all of the pieces of the latch on the hood, and the parts on the car that held it, thus that proof was destroyed before we had any photo's etc...anyway, I could sit here, and continue to go over and over and over each and every tiny detail, from that moment I got the 
dreaded phone call, and tell each and every detail of the entire ordeal, but it does me no good, I already have had to "relive" it so many times, and it just causes me more hardship, more pain, more emotional overwhelm, and will not allow me to try and "heal"... not that talking about it is a bad thing, and that is the one thing for me that is cathartic... to be able to "say" or "write" my feelings, thoughts and so forth.. that is what makes me the writer I am... but all of that will not change the outcome, and I can talk until I am blue in the face, and that will not "fix" the damage this has caused to Jim, myself, and my family and friends.... as I told my Mom several times, I feel "cursed", and this is not the first time in my life I felt that way... it is like some dark ominous cloud hangs over me, throughout my entire life, I have felt it and almost seen it - and if anyone says, "Well, everything happens for a reason" to me, I may smack them in the nose!!!! That is what we "say" when we are at a loss for words... and I am sure I have said it too in the past, but trying to "find the good" out of something so outrageously bad... sorry but I just don't see it.... so where to begin - to try and "pick up" the many pieces of a heart broken, a body well riddled by illness and stress, and an emotional realm that as "strong" as everyone claims I am, I am not sure at all, that I have any more "stamina" of mind to sustain me anymore... and even trying to put one foot in front of the other, and move forward... well, that remains to be seen.... my worst concern at this moment is Jim.... he stood the one that had more loss than anyone from this, and for him, this means no help with doctor bills for the future care he needs, no money to sustain him in life and he has lost much of the place in the brain to "hold" a thought process so he can again design and develop websites and so on... the "coding" is something that requires a vast amount of holding onto thoughts, that may have to require coding on several different places and pages within a site... and especially anything complicated as his clients have had, online shopping carts, and the "behind the scenes" information that must detail their sales, inventory and so forth. I "worked" with him on more of the design part for about 4 years or so, and since then, so much has completely changed... it would take me months, if ever for me to even be up to speed again to even do design work... so I know for him this is a devastation that goes far beyond what most even comprehend... again each and every thought and prayer are needed in a continuing way... to help sustain him, as well as myself, and my family..... 

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



Monday, August 31, 2015

IFAA - Register to Walk! Physically or Virtuallly!! You Can Join in!


Who out there lives in or near (or will be in) NYC on September 20th, 2015?

There is a great event that day hosted by American Autoimmune Related Diseases Association (AARDA) to raise awareness about autoimmune disease. International Foundation for Autoimmune Arthritis, official hosts and event coordinators of World Autoimmune Arthritis Day, is attending to support the event and to raise awareness about a much needed AARDA program "ARNet" (Autoimmune Registry Network).

If you will be in NYC on September 20th please sign up to join the IFAA Buttahflies and meet IFAA Executive Assistant, Kerry Wong and other IFAA Representatives. Sign up by yourself or with family and friends but sign up if you care about autoimmune arthritis awareness and have a fun day with IFAA and AARDA!

http://www.ifautoimmunearthritis.org/upcoming-events.html

Friday, August 28, 2015

Chest Xrays, Cellulitis, RA, Swollen Joints, Fingers, Hands, Unable to take my RA meds, Lawns, Neighbors, and Dealing with all of the daily stuff of Life

Well once again we face another Friday! This week has been anything BUT GOOD... in about 4 billion ways, I thought I may just lose my mind, or the tiny bit of it I thought I had left.... FINALLY and who knows for sure but Urgent Care called yesterday afternoon and after over 2 WEEKS of back and forth from them to the Rheumy, I think they have the correct Order for the Chest Xray!!!! Sometimes miracles "can happen"... although lately NOT for me! I believe I mentioned I DID FINALLY FIND a Surgeon who is thankfully just over in Waxahachie to probably remove this lump on my left thigh. But, what I have NOT told the doctors at all, is that I have this other one that formed several weeks back on my right thigh, in just about the same spot. But, since I am seeing the surgeon a week From today, I felt I would bring it up then. BUT< once again I ran into another issue... now that lump that never really was "red" or what they call "agitated" on the outside, or really was never sore, now in the past few days, had become more red on the outside of the skin and it is extremely sore... and so it the one on my right thigh... not really red but very sore to the touch. Since I still have a week before i see the surgeon I called my PCP this morning and told them to let him know, and that I felt I needed another round of antibiotics until I can get in to see the surgeon. I fear now that the infection could be growing outward, and that is the very last thing I need right now... so I am waiting on a call back to see what they say. I hope he does not want me to come in... there is really nothing more to do, but get back on the antibiotics, and wait to see the surgeon,... and then I have to run over across town and get that chest Xray I hope done today. PLUS I DO have to take Mom's care to be inspected today, since they have made the changes in how we register and inspect our vehicles in TX, as of March 2015.So, we can't get the registration sticker until I get it inspected.... but not a big ordeal, I just have to go get her car, and take it to be inspected... I DID get the "bug granules" finally yesterday and I broadcasted them from front, back and sides all over my lawn. I HOPE that curbs the fire ants, which I have already put stuff on all of the mounds, but this other stuff also gets rid of other ants, fleas and so forth, which I can tell what I put out in the Spring has stopped working... thus I needed to do it again... ONE GOOD NOTE FINALLY... OR I HOPE SO... MY ECHOCARDIOGRAM CAME BACK THAT MY HEART FUNCTION IS "BETTER" A BIT, THAN WHEN I HAD ONE DONE IN 2011!!!!! NOW THAT DID MAKE ME HAPPY! But, as I told Mom, I "hope" the heck it is "mine" and is accurate!!! Knowing my luck, hell it could be read wrong or someone else's - anything is possible with me and my stuff.... nothing is usually ever that easy..... but if so, that means I should be good to go for the lumbar surgery dammit if I ever get RID of this damned whatever is going on with the lumps on both thighs... there is no way, no how they will do surgery on me until I am all clear of that, along with now I will NOT be able to get back on the Orencia or the Xeljanz UNTIL I am all CLEAR of infection!!! WHICH MY RA IS so MUCH worse! Both of my hands, wrists and fingers, I can barely use... I have hell from opening a jar, a lid, or anything, along with I can't carry stuff as well... my hands are just so swollen, even this morning worse than ever... my ankles, my shoulders, neck everything to do with my "joints" seem to be so much worse that ever... and I am extremely concerned... not only am I so stiff and swollen, the pain is bad again in my hands, fingers and wrists... PLUS I GUESS since my neighbor had chosen to all of a sudden ignore my existence... O am going to have to fix my lawn mower (the rope broke that pulls it to crank) fix that, and mow the lawn myself... I am sick and tired of seeing it like this, and I will be damned if I ask him... he has a "bee" in his bonnet over something, I have NO CLUE what the problem is... but my yard looks like hell and I intend on getting it mowed dammit... well I have to get dressed and get going... or I will never get all of this crap done... more later, and happy Friday to All!

Friday, July 10, 2015

Doctors Visits, Sleeping Late of course, thoughts on Autoimmune Illnesses, and why some of us tend to get them and others don't....

Well of course... I am supposed to go to my PCp and Mom has an appt also... this morning, hers at 10:15 and mine at 10:30  I had the alarm set even though I am always up early and of course.... I SLEPT LATER than I wanted to and teh damned alarm did not go off.... LOL... tells me what kind of day it is going to be, thank goodness the appt is local and not but about 10 minutes from here... but I wanted to get some things done before showering and getting dressed... guess those will have to wait until later today or over the weekend... I am feeling either like allergies are acting up OR I am coming down with a "summer cold" or something. I've woke up and even last night going to bed with my head kind of plugged up, or feeling like I couldn't breathe as well through my nose, and I had to get up in the night 2 nights snow and use my nasal spray... and of course then over sleep.... I am in the process of getting our Mayor to sign a "Pain Proclamation" for September Pain Awareness Month and they are have "Beautify in Blue" Theme. If I get the city to approve it, I can put up posters around and tie blue ribbons and so forth in September around as long as it is okay with our Mayor and City Counsel. I really want to do this.... I've posted things about Arthritis and the Arthritis Foundation and I've had some Lupus things I've posted off and on... I even have 3 Proclamations from the Mayor 1 and 2 from the Governor of TX signed for Lupus for 3 prior years. So, it would be nice to get my city involved in the Pain Awareness Month. I know we have MANY chronic pain sufferers, lots of people I am sure with autoimmune illnesses, such as a cousin who has RA, and I hear all the time around town about people either with the illnesses, OR they have family with especially Lupus... in fact I've wondered about the Lupus several times. It seems Ennis has more of a tendency to have "Lupus" patients more than RA, or some of the other autoimmune illnesses. I know a couple of girls  went to school with had MS some years back. So, it would be really interesting to find out more from either a "poll" or study of some sort about "why" we have more of one than the others etc... I have my own thoughts that all of these AI illnesses (and I include FM,CFS and ME) in the list... that are partially "heredity" and then also partially caused by something we either eat, breathe, have in our air, water, food etc... that suddenly "awakens" those illnesses in some, and not in others. Of course I am very much the "laymen" when it comes to this, but over the years of my own plight with the illnesses, all of the blood work, when my symptoms seem to be at their worst, why some meds work and some don't etc... all have led me to believe... kind of like cancer... our immune system could be "wired" from birth to have more of a tendency to suddenly have something in life happen to cause them to act up. From stress, which I know for a fact makes me much worse in flares", to having something very dramatic happen to you in life, a very bad illness, an accident, something that puts so much stress on your mentally and then of course effects you in a physical manner also... and then that happens to cause whatever may have been staying "in check" for many years of your life, suddenly just runs "amuck" in your body. What gets me is that for years I was told due to all of the joint problems, that I had DJD and DDD, degenerative joint and disc disease, and at that time usually that meant of course "arthritis". I can recall questioning my doctors even in my 30's as to why I would have this problem so early in life, and their response was usually "genetic" in nature... my Dad had arthritis for many years I recall. He always wore a "copper wire" around both ankles and complained with his knees more years than I can count, even when I was very young. But, also never was it questioned "why" in his I am sure late 40's had that bad of joint problems, especially his knees. His job and when he was young hoeing, pulling and chopping cotton, to move onto working at that time what was known as Ennis Tag... at 16 years old... and then it went onto become Ennis Business Forms... and that was on a concrete floor, years on a printing press, and then he was in management the last 20 years or more, before retiring. So, the doctors blamed his on "environmental" problems. But, back then, I don't think RA, was even anything the doctors knew enough about or anything about to make a diagnosis. So, even though Dad had "symptoms" back very early, his were considered a part of his lifestyle... he also fought in the Korean War, and contracted a very seriously bad case of Malaria. He was in the hospital 3 months, from what I know. Even the whites of his eyes turned yellow from the Malaria Fever. He never could give blood after that. I think that it remains "dormant" even though you recover from it. So, I wondered if him being so ill with such a bad disease back then, may have had something to do with his later joint problems and arthritis.

I've came to the conclusion that the majority of us, have our own "thoughts" about the why's of these illnesses. Many of us are more "experts" about some of them than our own "experts"...

Even though this sound harsh.... Yes, our doctors are the "specialists"... they go through many years of schooling, hard work, studying, and all to become doctors... and then more years to really specialize.

Yet, when you have never "experienced" a "chronic illness" ... whether pain, autoimmune illnesses, arthritic illnesses, FM, CFS and many more... you just cannot "know" all of the in's and out's of those diseases. When you LIVE, EAT, BREATHE, WAKE, SLEEP them every day of the course of your life, you tend to become an "expert"... by having the problems, be researching very specifically certain symptoms, by reading, by the latest news and developments, by websites that provide tons of good information and so forth... so of course doctors are the "experts as far as "knowledge" in schooling, BUT, they cannot possibly "get" what we feel, see, hear, smell, and LIVE with daily.... thus I cannot fathom in these times physicians are still "NOT HEARING" us truly... they may "half listen" but some of them like my own Orthopedic doctor, will flat "dismiss" me and say I am "not the expert"  again. one of the doctors that DOES NOT like an "educated or informed patient"... so this is my take on things for the time being... when I return from the doctors later today, I will add more onto this.... but please post your thoughts....

Tuesday, June 23, 2015

Early Symptoms of Autoimmune Arthritis Investigation - brought to you by the International Autoimmune Arthritis Foundation!







It took 18 months and over 3500 hours. It required online educational courses in research methods and data analysis in addition to private mentoring from a lead research consultant. It needed cooperation from our friends at the Spondylitis Association of America, Lupus UK, Sjögren's Syndrome Foundation, and International Still's Disease Foundation to serve as Nonprofit Organizational Experts on symptom reporting. It required patients with RA, PsA, SLE, Sjogren's, Ankylosing Spondylitis, and Adult Onset Still's Disease to see if they qualified to participate and, if so, donate 60 minutes of their time to report their disease progression from onset through 24 months.
It required patience, willingness to learn and grow, and the passion to make change in the delays in detection, referrals, diagnosis, and treatment. But we did it.


The 150 page Early Symptoms of Autoimmune Arthritis investigation into the true early symptoms of 6 diseases*, as reported by the patient and compared to current symptom lists published by the ACR, NIH, National Library of Medicine, and Mayo Clinic, will be available for you to download on July 1st from the IFAA website. The results from this investigation will be used to create new, updated Early Symptom Patient Models per disease and by group.


A special thank you to Janssen for making this possible.
*AOSD FULL analysis will not be included in this publication (although much of it will) as the original recruitment was too low for 95% scientific accuracy. The number has now been reached and AOSD will be added to the analysis by the end of 2015.



 Early Symptoms of Autoimmune Arthritis Investigation

Below is my post to the IFAA!

I know that this took an astronomical amount of work from the IFAA and all, plus many more including Janssen that helped to make this all possible. In the hopes that this will be quite an eye-opener for everyone that is involved with Autoimmune Arthritic Illnesses, along with all of the other AAI's that can go along with the "Arthritic" ones. I am proud to say that I've been a part of this incredible bunch of ladies and men. It took many, many long days and nights, to get all of this in order and put into the publication that it is coming in. My hopes are that this will bring even more awareness, more education, more "early diagnosis", more Advanced and Early, plus "aggressive" medications, and treatments; because up until now, the many, many of us that have been through the "fires" of one doctor after the other, one diagnosis after the other, one medication after the other... which may go on FOR YEARS... only to find out something else is causing the problems, or you may have NOT been as "ill" had you gotten proper care from the beginning... as a woman, I know the spill, about, oh, it is your hormones, or you are too "young" to have joint problems, or you are just stressed out... and this from Physicians.... that are supposed to be "specialists"... THEY need EDUCATION also in many ways... so I say again CONGRATULATIONS IFAA!!!! What an incredible feat you pulled off

Rhia Steele


Monday, June 22, 2015

"Cake" The Movie - A "must see" for all of us who suffer through at times "intractable pain" & just how it truly effects every part of our lives

I haven't finished watching the movie "Cake" with Jennifer Aniston in it. I started it earlier in the afternoon, because I've been waiting for it to come out. After seeing the information on it, on the Arthritis Foundation Website, and then watching a preview of it, I knew as soon as I could find it, I would watch it. I knew it would not be "funny"... and I knew it would probably be a very difficult and sometimes even emotionally painful one to watch. So far, Jennifer should get an Emmy, Golden Globe and whatever else they give out for "best performing" artist. She is totally amazing in this film, and she truly gives "heart" into just how horrid life can turn on a dime. As I took a break for a moment, and walked outside looking at the deep dark clouds around, I realized how within a "breaths space" as my saying goes, that life can go from "good, you are working, in a good relationship, have a home, family and all seems to be going well, and before you can turn around ALL of that and more become like someone put your entire life into a blender, blended it well, and poured it all over the floor... and like an extremely difficult jigsaw puzzle, you don't even know "which piece" to pick up, and how to begin "trying to glue" your soul, your heart, body, mind, spirit, everything back together... to even somewhat "resemble" how it used to be... pain, whether physical, mental, emotional... whether from accident, illness, or whatever may bring it on... can sometimes for some be much too hard to bear... we ALL step into the "space between"... dark and light... trying to decide whether we need a "flashlight" or a pair of sunglasses... and everywhere you turn... it seems to be the wrong direction... I have NO answers... but I STILL have the "want to"... to continue to put one foot in front of the other, to climb one inch up the mountain, and when I begin to fall, dig my heels in and sometimes they may bleed, along with the fingers that the rocks have dug into also... but determination, will, longing for the better, and knowing for SOME REASON I am HERE!!!! ... I continue to be "here".... I may never fully understand the "why's"... and honestly right now... if I try to even begin to figure it out, I just get more confused... so I just "am"... and I will listen to my heart, and my head... and I know those will point me in the direction I need to go.... I say this because I truly KNOW there are MANY just like myself... and YOU also, may not know the "answers"... but you can certainly take those "baby steps" to a better reasoning someday... as to the full truth.... Each of you that continue to ask about me, pray for me, be concerned about me... and love me... without condition, just as I am... Thank you... and if you feel you are "strong enough" emotionally, I ask you to watch, the movie, "Cake".... 


 
















After I finished it, I was a bit "bewildered" by the ending. I know as she "Jennifer" did what she did at the very end, it was a signal, that from there she would begin to "heal". I guess I expected an ending possibly of a bit more of how she began to put things into perspective. But, then as I thought about it throughout the rest of the evening and this morning, that it was left up to us, the audience, and possibly those of us suffering from such a tremendous, almost unbearable heart break, that we vary, all of us, how we "move past" loss, whether of someone we love, loss of our "normality" of life".


I am glad I felt "strong enough" to watch this. In so many ways, it "fit" just what I am going through at this time in my life.... my own illness, pain, and all that goes with it (them), a "loss" of who I am, who I used to be, and still wished I was in some ways, a loss in a relationship, actually do to an accident, not the loss of a child, which I just cannot begin to fathom just how painful and horrible that has to be... but a loss in a relationship I've had for 13 years... basically due to a few moments, and within those moments everything in two lives changed forever....

I saw pieces of my own anger, frustration, wanting one moment to be alone, and the next wishing someone would just hold me... and tell me things will get better... and in the next breath the anxiety of how I will accomplish all that needs to be done, and then the realization, as ill as I am, I HAVE BEEN doing EVERYTHING anyway... so why is "now" any different than a few weeks ago? 

The pushing away people so they don't see the fear, the anguish, the heartache, or the pain, physical, mental and emotional... days like today, that I would just as soon sit on my sofa, with my two pups beside me, and do nothing but watch movies all day long. Which in reality, I could. But, that would not do anything but put me further behind in things that I either need to do or things that I want to have done, most of which I have to do myself.


So, chronic illnesses, chronic pain... all of them... whether autoimmune, that effects every aspect of your entity... your body, sometimes in so many different ways and in different parts of your body... emotionally having something chronically with you, illnesses and/or pain, tears you mentally to pieces... it just does and anyone that would say it does not, has not came to the "reality" that they are truly ill. 

The brain fog, the slowness of thoughts, forgetting things, having notes to keep up with notes, calendars, and still forgetting appointments, birthdays.. and even if you do remember more often than not, you just don't have the strength, or stamina to go to an event... even going to the doctors office or going for a test of some kind is just such a major ordeal, that I just find myself postponing a test, because I just cannot stand the idea of having to be put through it.

Besides I already at times know the results, and the test honestly is just to "cover" the doctors butt, and to shut the insurance companies up... they waste so much money and time... when you could have had whatever "fixed" and be healing rather than going through some expensive scan, test, etc... that still does not give them the things they need to know. I have more than once some to figure out, why it is to the point of so many tests, scans etc.... each and every time I had a "joint surgery"... when they actually can "see inside" the joint in the surgery, they find it was much worse than any CT, MRI or X-ray was showing... so to me, once again so many hundreds of thousands of dollars just wasted, along with a patients time... when surgery is the only answer to truly KNOW AND SEE what is exactly wrong.


I hope you do watch this movie, you get some things out of it, that shall help you find your way through it, and take something from it to help you, and your own chronic illness and pain...

Wednesday, June 10, 2015

Lots of thoughts and prayers needed now...

I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.

When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...

Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...

As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.


We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????

None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.


So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...

I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....

Thursday, April 30, 2015

Where do you Go? Hip, lower back pain - CT Scan shows "something" yet it seems like now enough to cause this type of pain...

I've been going over and over this stupid CT Scan from a month ago. I wished I could get more information, but when I look up what is being told on it, I am getting a "google" search of all types of issues. Some of them may pertain to me, and others I am not sure of.

I am sure of a couple of things. I almost am to the point I cannot sit at my computer. If I sit here more than 10 minutes, my hips, butt and lower back just throb, burn, ache, and it feels like very deep bone pain.

Nothing has really changed since the injections (Transforminal Epidural Steroid Injections) which were two weeks ago, as of tomorrow. I thought I had felt a bit of relief that first couple of days afterwards. But, then I began to notice my hips once again feel like they are on fire if I sit for very long at a time. I can get up, walk around for awhile, then the pain comes back, resonating kind of from my tailbone, down into my hips, around the outer part of my thighs, and often into my calves and down into my heels. I notice if I try and get out in the yard to pull weeds from the flowerbeds, pick up things and put them in our trash cans outside, try and break down small limbs from the trees and also trash them... after a bit, again that deep down kind of like a burn starts again. So, if I sit for too long, especially here at the computer, or if I go and walk or stand is the worst for a long time, my hips and very lower back just hurt like hell.

I am still in the thinking that I have two problems... the hips and then my lower lumbar spine about where it joins at my tailbone. That is actually where the CT picked up some issues, I have vertebra I think, that has "slipped forward"... plus I have the Retrolisthesis


which is also meaning it has slipped the opposite of what many of them do... plus I have known about my "crooked spine". Now the levoscoliosis I guess is enough that it shows on the scan. All of which even though don't appear on the CT as being horrendous, as before they have done Scans, X-rays, MRI's that show not so bad. Then they decide to open the joint up and take a look, and sure enough the "arthritic" degeneration and damage was where it was not seen on those scans.

http://www.spinal-foundation.org/conditions/vertebral-slippage... 

It has been exactly two weeks ago today, since I had the "Transforminal Epidural Steroid Injections" in my very last Lumbar spinal vertebra L-5 and then I believe S-1 shows issues also.

I thought right after the injection that it felt better. Yet, after a couple of days, I began having the same types of issues, pain when I sit for very long at the computer, pain if I stand too long in one place, or even if I walk for a long distance, especially like shopping... where you stop, then walk a few steps, and over again....

My thoughts are that I have two issues, as I've said all along. I feel both hips are a part of this, simply because this is what has happened a couple of times over the past 6 or so years. It seems about once every two years my hips act up, probably more like bursitis. Which, my orthopedic surgeon seems to think that "bursitis" of the hip would not cause all of the pain I am having! WELL, I have news for him. I've had it before and it hurts like hell. So, where he gets off thinking that my hips are not the issue and my back is, I am not sure...

Anyway, I am headed to Dallas in just a bit to follow up on those injections. While I am at my pain specialist, I will ask him what his opinion is on having this discogram/discograph... that the ortho doc seems to think I should have....

When I return, I will update everyone on the situation!






Wanna Get Posts via Email:

Lupus Month!

I believe when we FINALLY have done the research, have a "cure or something to lessen the illness when you contract it... that ther...