Showing posts with label Opthamologist. Show all posts
Showing posts with label Opthamologist. Show all posts

Wednesday, December 11, 2013

A Beautiful Bracelet & The Lady Behind the Incredible International Autoimmune Arthritis Foundation

How ONE Person Can Take something out of "nothing" and turn it into An Amazing Foundation For those Suffering from Autoimmune Arthritic Illnesses.

... everyone--- this bracelet signifies so VERY much to those of all who suffer from the infliction of autoimmune arthritic diseases... And this dear woman that makes them by hand each one has brought so much HOPE to so many people AROUND THE GLOBE!!! I am absolutely so proud to tell everyone that I am an "Active Volunteer" for the IFAA!!! And I could not ask for more.... Rhia I will also get this posted on my blog.

I wanted to match the "reasoning" behind the bracelet and what it stand for. First of all Ifaa Tiffany Westrich-Robertson makes each and every one of them by hand. this is the way she made the very first one, thus the "Buckle Me Up Movement" began. She still continues to make them special order by hand. So, If you are wondering "why the beads" and what this stand for in it's entirety here goes. "The 3 silver beads and 3 black beads represent all people working together to make a difference. Red is the color of strength and signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more and more people to join the movement to raise a global awareness about Autoimmune Arthritis."
-This explanation is packaged with each bracelet.

Also there is a "story" behind the entire background of how this bracelet was initiated by the "Buckle Me Up" Movement. From there it has transitioned twice, first to IAAM (International Autoimmune Arthritis Movement" to evolved almost like a butterfly in a cocoon to something incredible which is now a "fully Non-profited Organization known as the "International Foundation of Autoimmune Arthritis".. So through it's "growing" spurts to become a group of people so incredible is remarkable and so is the story behind it. Thus it began by a thought and a bracelet just like this one. When they were still (IAAM) that also have a beautiful motto behind that too:

( The 3 silver beads and 3 black beads represent all people working together to make a
 difference. Red is the color of strength and signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more and more people to join the movement to raise a global awareness about Autoimmune Arthritis IAAM, sounded out, is "I Am". While we have change our DBA (doing business as) name to the International Foundation for Autoimmune Arthritis (due to the addition of research to our scope), the awareness portion of this organization is still a "Movement" of awareness. Therefore, the IAAM is on the awareness bracelets. In addition, the "Buckle Me Up!" Movement is written inside to remind each person who wears it where this all began and how far we've come as a community.

Our Message for this Autoimmune Arthritis Awareness bracelet focuses on this statement. Each bracelet is packaged with the Message below:

"I Am...
A Leader for Change,
A Believer in Progress,
And Rebranding Stereotypes.
I Am an Advocate for
Autoimmune Arthritis Awareness." )

(The portions in the () are directly from International Foundation for Autoimmune Arthritis URL: and you can also see their Facebook page at: International Foundation for Autoimmune Arthritis

For myself, this is the perfect opportunity to also tell why this Foundation absolutely means so very much to me. The founder Ifaa Tiffany Westrich-Robertson and her story that she has about how long she suffered well before FINALLY getting a physician that KNEW something diagnosed her, reminds me so much of myself. I also trudged along for years (like many of you) to get "misdiagnosed" with everything from "soup to nuts" as the saying goes. So, after she finally had a grip on the real reasoning behind her years of symptoms, then she knew there was a very strong need in our nation and in fact our world, of getting this out there to say "Hey Wake Up" to doctors, the medical researchers, patients and caretakers, families!!! It was TIME to do something! But what? As myself, I am but one person. I am "limited" in many ways to "get my point across to the many, many people out there that I don't have a way to fully open the doors to a grand eye opening "movement" of sorts. Yet she was able to take something so very simple, and create it, put her story and her whole reasoning for the bracelet online on the right place at the right time... and from the 1st moment of "but one" person, became thousands around the world!!!! So as I said above, I have always wanted to be able to shout out to everyone that will listen, and "heed" what I say to "DO SOMETHING" I feel "my voice" through her own battles has truly been spoken to whom I've always wanted it to. Now at the right time, and in the right place, I've been added to the glorious "fold" of men and women who share a strong desire to make all of this happen, larger, more verbally, online to potentially millions of people, that we need CHANGE> Change that means a "Quicker recognition of "symptoms" by health professionals, A Quicker diagnosis so people can "delay" or even "stop" damage of the joints and the body before it takes its toll", "Quicker medications, that take these illnesses and "kick" them out of the body, or halt them in a way that "remission" and possible wellness are something that can be achieved. and Last but not least "A Quicker, stronger, verbal, out reaching message to researchers, to those who can donate their time, or funds and help a cause have those researchers WANT to study these diseases, illnesses and syndromes to perhaps even "heal" us "before" we even know we are ill. Everything above I've said I feel a strong conviction that through the IFAA, it's Founders, and all of its Volunteers, all and more of these things will be achieved!!!!! I hope you take some time to go to their Website, go to their Face book page, ask me questions for now I am a piece of their "pie" as an Active Volunteer, and go to my own blog. I will be putting up this information, and I blog quite frequently about this group! 

Thursday, December 5, 2013

Some of My Posts are worth "Repeating"...

As I went through Facebook this morning to read any new posts there, I found that one of my dear friends went to see her Rheumatologist yesterday. The prognosis was that her RA is worsening and is affecting her vision due to inflammation. So, she is headed for an opthamologist. I know that I had told my "horror story" over the "Neuro-opthamologist before here, but since I decided to tell the story there again for many that may not have seen it when it all took place, I also thought it was very "well worth" repeating again. The LONG of it, and it is long. That is the ONLY way I know to write about it. Start from the beginning about the double vision, since that sent me to an eye doctor in the first place to now when I am still waiting to hear from the Medical Board about how that doctor was "punished" if at all. So, below is how I told it this morning (very early) on FB. I still, even while I wrote it out again this A.M., find it almost too ridiculous to believe! I have had my "rounds" with doctors in the past, but nothing like what happened early that morning at one of the hospitals in Dallas in the operating room I was in.

My post from FB:
 It is wonderful to have a great rheumatologist that helps like that. Mine is an angel from heaven also. I one began to "see double". I first noticed it while watching television one evening. I would "see" the real car in the movie, then right behind and a bit upward I saw "another" car duplicate. It scared me so badly. I am on Plaquenil so I have to see an Opthalmologist annually. It began to get worse, and I would notice it then outside during the daytime. I went to my regular Opthalmologist, and thy put a "sphere" in my glasses. But, they sent me to a Neuro-Opthalmologist. There are only like 3 in the state of TX! Two happened to be in Dallas. The first one is a great doctor but his "bedside" manner was like a BRICK! Worse than that. He saw me like three times and told me NOTHING! He barely even looked at me, all of his 50 "staff" members seemed to do all of the exams. He decided since my "inflammatory" levels in mu labs were up, I may have Temporal Arteritis, which meant LARGE doses of predisone for like 2 YEARS! I mean something like 40 mg daily, which means my osteoporosis (mine is already SEVERE) would just get worse if that is even possible, I would puff out like a balloon (I already gain weight when I have to take the 14 day step down of it with a flare), my skin is already paper thin, my teeth are already having to be pulled out and decaying like crazy, I already bruise extremely extremely easily and I STAY bruised in some places forever, & so on. Every "bad" thing prednisone does I already more than likely have. As my PCP calls is the corticosteroids are a "necessary evil" for many of us. Needles to say, this guy did a "temporal artery biopsy". He never told me "how all that happens, what he would do etc." I had to look it up and then I even questioned my PCP again and asked him if he thought it necessary. Since I was already on a daily small dose of prednisone, even IF I had the Giant Cell Temporal Arteritis", it probably would not show on the biopsy anyway. So, I had it and that is another entire nightmare story! Basically, I had to file a complaint to the Texas Medical Board. He "blew up" at the nurse that was with me in the surgery room, while I was just waking up barely from the procedure. It was so BAD (I was STILL on the operating table!!) that the Anesthesiologist stayed with me to make sure nothing happened to me. Plus there were about 20 other employees standing where all of this took place, as he continued to YELL, CURSE AND SCREAM AT THE NURSE!!! They were standing at the ONLY DOOR OUT, thus I was there for the entire thing. They even called security on him. It is insanity to say the least. It finally got stopped (this went on for more than 5 minutes for sure), and I was taken by the guy who put me to sleep and two more nurses back to outpatient surgery. Boy, they were questioning me to make sure I was okay etc... but when they wheeled me back to outpatient we went RIGHT BY the doctor and he never said ONE WORD!!! To this day he has not apologized or nothing. I NEVER went back, but to see him for the biopsy results which were "negative" anyway. Even that last appointment he never said a word, gave an apology, nothing... but between my call to the hospital, and their calls to me, and reports sent on him to Medicare.. I filed a formal complaint with the Medical Board. My complaint was legit... in fact he went trial over it about mid October, and I know from another letter from the Medical Board, he is still even more under investigation and they are decided just how badly to punish him. The nurse really DID nothing "wrong" from what I was told.. she "opened" one of the sterol instruments in a way that did not "suit" him, so that is what the whole ordeal was about... I know this sounds like something from a horror movie, but this is the ENTIRE TRUTH! Talk about nuts! I was told my by Rheumatologist he used to be a doctor at the teaching hospital where my Rheumy is and they "got rid" of him due to his "temper". Okay after ALL OF THAT (sorry I got side tracked but I tell the story because PEOPLE need to know DOCTORS are not all SAINTS, and they don't know everything... go with your "GUT" feeling... if they don't suit you, find someone else.... So, I go to the only other eye specialist in TX that is close, and it takes like 3 months to get into see him. After all of this, he said it was my "Lupus" causing the double vision. He or "any" of them are sure why ( I STILL think I have a mild case of MS myself & my Rheumy basically agreed with me) so he prescribed an even different type of specialized "sphere" in my glasses so while I have them ON, I do not have double vision. But, without them on I STILL HAVE DOUBLE VISION!!!! Even through this, I went to 3 Neurologists and they could not really say if I have MS, or one seemed to think I have Myasthenia Gravis. Go figure! Which it is ALSO AN AUTOIMMUNE DISEASE! Okay after all of that rambling TIFFANY, definitely find you an Opthamologist that you feel good about. Go with your "gut" feelings about all of it I suggest. Not just the eye specialist, but now with the RA worsening, you may begin (I HOPE NOT) other symptoms... As you already know (OF COURSE) do your HOMEWORK! I know that sounds silly me telling you that. But I found out sometimes being the "patient" and going to a doctor, I don't see the whole thing "objectively" at times. So my husband usually goes so he can see from the "outside" of the picture, if you know what I mean... My heart goes out to you... my vision has worsened... and my glasses are wonderful BUT seeing double the rest of my like honestly SCARES ME! NOT ONE doctor... really could "diagnose" me... the nature of the "beast" of these Autoimmune Arthritic Illnesses... sometimes even the experts "don't know"... so I find I go in sometimes with MORE research, ask them about it, and pretty often, they will put me on a med I suggest, as stupid as that sounds. "We" as patients spend much more TIME than most doctors do "researching" every aspect of these illnesses... where doctors have to know so much more of a LOT of variety of illnesses, thus they sometimes are not even "aware" of the latest and greatest meds, research and so forth. They just don't have TIME enough to "research" each patients medical issues and symptoms as well as we can... that makes sense... with many patients, their time is limited about everything "new"... This AGAIN is where WE, the IFAA CAN AND WILL get these types of things RESOLVED!!! We can make the difference and we will.... all right I will stop my short "novel"... but I had to tell that... for you Tiffany, for all of us here, and for IFAA, I think those stories from those that are "inflicted" with these AAI can step up to resolve many things!!!

Wow! I know a small "novelette" when I post something like this!!! As I said above, this is why, WE MUST follow our GUT feelings when it comes to doctors, labs, tests, hospital care and so forth. They are all "humans"... of which we know we make mistakes. Many of those errors may not be "on purpose", BUT it still means OUR LIFE AND HEALTH in someone else's hands. So, anytime you are at a physician's office, whether it is for one of the AAI illnesses...OR the flu, ANYTHING, ask questions, if possible take a "observer" with you if possible. A caretaker, spouse (often they are both), a close friend, someone that can help look at the visit "objectively". When often go to the doctor, especially a new physician, and before we go, there is an entire list of things we want to ask. Well, I know for myself IF I DON"T make a LIST, a "physical" one, I will forget half or all I wanted to ask. It could be the doctor "answers" your questions before you have to ask. Yet, I find the opposite. Since they have lots of patients, getting "impatient" waiting, they all tend to me walking out of the exam room BEFORE they come in. There truly is NO excuse for it! BUSY yes most of them are busy, BUT as my own Rheumatologist has told me, they should NOT overbook patients and they do. You should NOT have to WAIT hours when you had an appointment set for months!!!! My PCP used to be so good about you arrived, checked in, sat a moment, and then they were calling you back. My PCP was in the room within 5 to 10 minutes at the very most. 
NOW, 4 years later; my appointment will be a follow up for 3 months in the future. I can almost guarantee, that I will be in the waiting area at the very minimum of 45 minutes. And even if I am called back to an exam room, it maybe 2 hours before he gets in!!!! I can understand if it is a "rush sick appointment". BUT when you have a SCHEDULED 3 MONTH AHEAD appointment, that is plain RUDE and inconsiderate!!! Many of these doctors now have posted in the waiting area, if YOU the PATIENT is LATE for over 15 minutes, they will "cancel" your appointment and reschedule!!! OR the one that really irks me, is that YOU WILL PAY 25.00 or MORE if you don't cancel at least 24 hours BEFORE your appointment! What about OUT TIME? WHY IS IT A "DOCTOR'S TIME" is more important than OURS? We have a life also, and are busy. Thus when we make an appointment way in advance we expect to not have to wait HOURS to be seen. Then by the time they walk in the door, they take a quick look at you barely, and then spurt out a few words, and as I said if I don't have that  YELLOW LIST in hand, mine will be out the door and gone. So, the LIST IS OUT as soon as I am in the exam room in plain sight! Now I totally get that they can't have patients constantly canceling appointments at the last moment, BUT there are "emergencies" that you may not know about until a few hours before that visit! Plus, why can't WE charge them? I've been there mor than once, and "he" has an "emergency" and he wants to change or reschedule, and that is okay. And what about paying us for spending often times HOURS for waiting on them??? Plus I have noticed now a nurse will come in and tell you the doctor maybe running late. But before I might sit there alone in that cold exam room for an hour and much more, and not one soul tell me what is going on!!! I've actually thought when it is a late appointment maybe they just left me there and closed up!!!! And I will say, NOT ALL PHYSICIANS are like this. I have several that are very prompt, and I may not wait anytime at all. But those few that do it to us need to have a course in "manners" especially "bedside manners". 

Okay, I've ranted and raved on this subject enough. I have about 10 irons in the fire now, and probably more that I have forgotten to write down! :) Blame it on the "foggy brain" as one of my friend's says. :)

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