Showing posts with label rheumatoid arthritis. Show all posts
Showing posts with label rheumatoid arthritis. Show all posts

Tuesday, June 3, 2014

WEGO Sharing HUB - Xeljanz ... sponsored by Pfizer.

Information for Rheumatoid Arthritis Patients & Caregivers

(Great Results with Less Side Effects)

If you’re looking for information on Rheumatoid Arthritis, head over to the RA Patient Resources Sharing Hub, sponsored by Pfizer.

There you'll find information about the role inflammation plays in your body, as well as educational videos about RA. You'll also find digital resources that can help you manage your RA. These tips and tools from Pfizer can help support you on your RA journey. Additionally, you will find information about a savings card for a prescription treatment option for RA.

Check out this link to WEGOHEALTH and the latest from Pfizer on Xeljanz:

Saturday, May 31, 2014

In Memory of A Very Young Soul - Taken Much too Early from RA... May you forever be at Peace Ali...

It is with GREAT sorrow that we at IFAA report tonight that one of our volunteers, and RA patient, Ali McKenzie, passed yesterday from heart failure due to Rheumatoid Arthritis. Ali was not only a young lady, she was an intricate part of both World Autoimmune Arthritis Day 2013 and 2014, standing in without hesitation to run many of the live chats and ensure guests were well taken care of. Ali, we at IFAA are heartbroken tonight, and want you to know you are loved and will be sincerely missed.

Autoimmune Arthritis diseases are SERIOUS. Please learn more and choose to understand it's not the same as "arthritis".

This is just too difficult to believe. I had only gotten to know Ali for a few months, but with her living near my daughter in and around Corpus, we talked and got to know one another some. My heart just breaks as I find out she has passed away due to complications from RA that caused heart failure. This young woman had so much to contribute and was a talented lady of graphics, and of these illnesses and so much more. The world will "miss" her, especially "our world" of the IFAA, and all of us that she had touched during the time we have known her.

May you rest in peace Ali, and know you are so greatly missed by many. Rhia

Wednesday, March 19, 2014

World Autoimmune Arthritis Day!!!

World Autoimmune Arthritis Day

Are YOU ready for World Autoimmune Arthritis Day 2014? WE ARE!Tomorrow we will launch a GLOBAL VIRTUAL WAVE to kick off the official registration, so make sure to join us and dozens of other organizations as we ignite the world in excitement about the countdown to May 20th!But first, the "Best of the Best" 2014 Nominations are OPEN! Please use this link to nominate the Best Bloggers, Support Groups, and Rheumatologists around the world. All nominees will be posted as resources for WAAD14.To learn more about WAAD14 and to nominate someone, visit:

Friday, March 14, 2014

More on the Continuing Saga of "Rhia's Law" If it is going to Happen, It Shall Happen to Rhia!!!

Honestly, when I go back and read some of the things that I've been through, put up with, did do, did not do... and all of the "happenings in my life"; it is almost impossible to believe myself Yet, I am the one who is and who is going to go through them.

Just one, is insanity! When you decide to "string" them all together, it almost feels like I am writing some fiction novel. Some of the things that have happened, it just seems impossible that any one human could withstand the pressure, stress, and the trauma I've endured. What I am about to include below is just a week or so worth of "happening. Honestly due to the "brain fog" I am just in a place that I can't even type. I find myself misspelling everything, or it is like I can never have my fingers on the right keys. Now this morning, I've lost my "coupons". Yesterday, I went grocery shopping and I had them with me. I remember having them and in fact I thought I had laid them down in one of my reusable bags. I was going to look through them this morning and they are just gone! Alone with the "sales papers" from WalGreens and and CVS, etc! I swear I had left one in the basket and someone really snapped those up. Those coupons, if you really think about it are almost like "money". when you are saving 50 cents, a dollar, 2 or 3 dollars, 25 cent 5, 4, 6 of them. Believe me I've walked out and save 40% on grocery bills. And at WalGreens and CVS, there are times I actual "save" over 50%! I have came in and the total I saved is more than I spent! Anyway, of course, there but it is true and a great tip. With all of our market products going UP, UP, UP and no DOWN in sight, every dime is going to help in one way or the other saved.

Before I copy and paste my latest rant on my own life's mysteries... I have a question for you...
WHY when you go into a DOCTOR'S OFFICE do they ALWAYS ASK YOU, "How are you feeling or doing today? NOW if I were doing "okay" I would probably NOT standing in this office!!!

I know there are times we go in for a "wellness" check, etc.. so we might not be extremely ill. Yet, when they look down on the computer or think back that you have called in that day for a "sick visit" then asking how you are is just is about stupid, as spitting out of the back of a truck going 30 miles an hour down the road!

I've come to have this statement "embedded" in my mind! And it stands so True for Me!

"It's Damned if I DO!!!! "And it 's DAMNED if I don't"

"And Now for the rest of the mess"

I wanted to let all of you know I've received THREE letters back from Senator Cornyn on 3 emails I'e sent him. He has definitely read what I wrote or someone in his "team" answered them, and just make it appear as if the Senator is "listening". He has sent emails in regard to "health care", "the payment doctors are "not getting paid" in regard to especially Medicare issues, and also is addressing more money going for research  & the allocation of funds to  National Institutes of Health and the Centers for Disease Control and Prevention, to try and help with all illnesses especially those of the chronic nature such as Lupus, RA, Diabetes and so forth. I was a bit hesitant to be "thrilled" because he is usually not one of the Senators that I really agree with. But pieces of what he said in each email gave me a bit of hope that there possibly maybe changes of a good nature coming along the pipeline. I think the government in general is seeing that they HAVE to step UP to the plate, pay our "good physicians" properly, and give them incentives to continue to keep their practices open. Without any type of government aid of any kind, whether it be a larger pay from Medicare and Medicare Advantage Plans, or incentives due to being "doctors that are superior" in helping their patients, while paying staff properly, keeping the good nurses on, and yet keeping costs down as much as they can without "harming" patients or those who work for them and need a decent salary, we are doomed! We already have a drastic shortage of MD's, when it comes to Family Doctors, and those who are regular MD's, who are not in the "specialized" business. Without our PCP, (Primary Care Physicians) we would certainly be in huge trouble. And without incentives for those types of physicians to be able to know when they graduate, they can pay off all of their student loans in a reasonable amount of time, be able to pay a staff and have a decent practice without feeling like they must take an over abundance of patients just to survive paying loans off, paying for their practice, a family, the insurance that is so high that goes along with being a physician, and also be able to take people's insurance, including Medicare, Medicare Advantage Plans, and Medicaid... then Doctors will NOT go into a General Practice. Our doctors are "specializing" us right out of the good old days when our physicians did it all. They saw you for a cold and the flu, they delivered babies, they took out gall bladders, they saw you in the ER in the middle of a weekend to sew you up, or to see you in the middle of the night when you were ill.  Those days of doctors are gone. Well, not entirely. Now we are seeing these new types of practices where you "pay" a certain fee a year and you get those types of services. But, usually it is a fee you pay up front each year, and you do not file insurance and so forth. They are more known as a "concierge" type of physician.  Yet, these types of physicians and their type of care does not come "cheap". Those annual fees are extremely expensive, and usually only the more "lucrative type of patient" can afford that type of coverage. So, that still leaves us without our "old fashioned" family physician. It is a huge and looming situation that those of us that are in a "chronic illness" type of situation see the "downfall" of the medical world around us. We cannot get the care we need, We cannot get the proper diagnosis, the medications, the labs and tests, or the proper care of any type, due to the high cost of it all. And even those of us with insurance, Medicare, a Medicare Advantage Plan, Medicaid and so forth are "losing the battle" also, because again doctors are not getting paid by these entities without a fight! Thus, they cannot keep their doors open to their practice without getting paid by those companies. Then they drop the companies and who can afford to pay out of pocket cash for treatments and medications? Have you looked lately at one of your print outs from your prescriptions when you pick it up from your pharmacy's? Like Wal-Greens, WM, CVS and so forth. I look at what mine say as far as what I "paid" versus what it would have cost me without my "insurance" paying. Medications that are even generic with costs of  $500.00. $750.00, $2,500.00 for a MONTH'S supply!  There is absolutely NO WAY those of us chronically ill or just ill for a flu and so forth can afford to pay those kinds of charges out of pocket for medications! It is insanity to think we can. Even "richer" folks would go broke paying $3,500.00 a month for a medication. But, my Aunt's cancer medication is like that. In the first place it is difficult to get, and in the 2nd place it is something like $4,000.00 a month, for 30 pills! Why they at one time were what I would call "well off"... and even at that, there is no way that they could afford those kinds of costs on medications! They have found help that does pay for the medications, but not all are the fortunate, So, WE, and I mean ALL of us, are going to have to do OUR PART, and let our thoughts be known. We have got to stand up as a nation together, solidified, and let the insurance companies, the government, the pharmacies, doctors, and pharmaceutical companies know WE are NOT going to take this "mess" as an answer anymore. It is time to find a solution, to be finding treatments, finding answers and diagnosis more quickly, getting doctors trained and better equipped to find out what is wrong, and get us properly treated in the nick of time, not after it is too late. Like myself... due to the Sjogren's, which honestly, up until the last year when all of my teeth are literally rotting and falling out of my mouth in pieces has any doctor been concerned over the Sjogren's. If I do not mention it, they never say a word. I am the one that had to research it and ask to try the 2 medications for it. Which neither are very good, but I am on one of them. Now, I face Lord knows what, There is so "good" solution honestly. I just had another tooth pulled Monday, and I am sure I face at least 6 more, maybe even more than that that must be pulled. There is no hope for them. Then the few I have that are "patched" just to keep them there, are possibly not long for falling to pieces also. Because none of this was addressed 7, 10, 12 years ago, before the decay set in, now it is TOO LATE. And come to find out (first of all I NEVER wanted dentures and the thought of not having my own teeth still just almost makes me sick to my stomach) even those... even the latest, "implants" are really NOT a GOOD SOLUTION for anyone with Sjögren's!!! Due to the Lack of saliva, those are difficult to deal with in the mouth. I still must find ways to keep my mouth moist constantly, by chewing certain sugar free gums with Xyitol in them, or sipping certain things like green tea, water, things without sugar and without acid in them. But even at that, still it is difficult to do. Plus the entire thing with the dental implants, is not done "over night". It can take up to a YEAR to completely finish the process. Which usually involves 2 surgeries, to get the implants in place, maybe more if your bone is not stable in the jaw, thus bone implant must be done first, then the implants put in, then the special dentures that "snap" down on those implants made to fit properly. So, it is a huge ordeal, and expensive one and one that takes time to do and to heal. It is insanity!    this is just one piece of the puzzle, and this puzzle is more than 1,000 pieces. It is more like 10,000 pieces and growing each day. The ONLY end we will ever see in sight is to stand up and tell them (our Senators, Our Representatives, Our Government ... all of them) we want better, and we want all of this insanity stopped! We deserve proper health care, at a proper price... and our health care workers deserve a proper salary, with decent working times and decent working conditions... it is a vicious cycle and it will NOT end unless we stand UP and MAKE IT! ONE VOICE can move mountains... think what 100,000, or a MILLION voices can do!                                                        

Wednesday, February 26, 2014

Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)

Being Caught in an Upheaval Between An Insurance Company, A Physician's Office, My Own Autoimmune "Flaring" Body, A Pharmacy, and What to Trust? Myself, My Doctor... Any of us... we are all susceptible to "Medical Mistakes"... And How do We Avoid those? Or Can We?

I will always be one of the first to admit, "no one" is perfect. We don't live in a "perfect world". Everyone of us are human beings. It matters not whether we are highly educated professionals, or a Mom or home maker. Whether you are the President of the United States, a banker, lawyer, and of course a DOCTOR, even though we want to "think" these people are more "immune" to errors, and yes they should be, we live in a "too fast" paced world, that for the most part offers "little" time to try and "double check" every thing we do in a day's time. 
I will also say that for the most part, I "trust" my physicians. If I didn't then I would and I have moved on before. If you "lose faith" in someone whether it be your physician, a banker, or anyone you do business with, must confide in, or within the very people that you have to rely on to sustain daily life necesseties, where do you turn to, and where do you go from there?

 I was so totally hopeful that the new year would bring "hope", a new vision, less symptoms, more ability to help make changes in this system of errors when it comes to ALL of the horrid evils of autoimmune illnesses, medications, insurance, or lack thereof, doctors, pharmacies, and the entire realm of what the hell is happening to cause such grief with those that seem to just NOT care about patients, about their own people, and how we are supposed to try and "cope"? Each day seems to be worse, not better. Things seems to go from hoping it will be "less complicated", to more red tape, and less reasoning with any human beings when it comes to the health rationalizations of life. Never have I seen such a lack of regard for "humans" from the medical world. I sound like I am on one of those "rampages". But, it is very difficult NOT to feel that way, when each place you turn to, each physician, each pharamcy, every phone call to your insurance company, every email you send... each medication, every step you make, turns around to slap you in the face, and make you wonder is any of the struggle worth it? I cannot possibly be the only one feeling the overwhelming stress of things getting worse when it comes to our health, and our health care workers. More and more I see doctors who are supposed to have taken an oath to "help humans", turn their heads and watch people become more ill. When you are reading daily, that those in dire need of medications such as the biologics trying to cope with THOUSANDS of Dollars of out of pocket costs due to this once again "tier system" of how we are "told" we can have medications, it makes me literally sick! Who, and mostly NONE of us with chronic illnesses can afford to pay $5,000.00 a MONTH out of pocket to get the one medication that may help keep you able to just live your life?  It is total insanity. I realize I am NOT the only one! That makes it even more difficult to deal with. Day after day, month after month, rather than watch "head way" being made, what we see is a government that absolutely DOES NOT care about their own people! Anyone that can take office, and turn their backs, to line their own pockets, in the name of cutting benefits so much that in 2015 Medicare Advantage Plans will CUT paying physicians/medical professionals (the "term" used in the original article was "insurers". That is so it does NOT sound like it is our doctors/medical professionals that are getting cut - another "loop hole for them) 20%! How can I (WE) even begin to rely on that kind of nonsense? What happened to taking care of your own people? It is very obvious greed, greed, greed and more greed fills our nation and our world. I was going to put this up on another "friends" feed, but there is no reason I should "push" my own issues off on those that may not feel the same way. The entire dilemma that has prevailed over my life in the past 3 months, is one that sounds like it belongs in a tale of horrors. Even when I "KNOW" for a fact everything I am "saying" is true; as I go back to either read it or email the ordeal to a friend, it is so hard for me to say "yes" this is really how it is! Where did we as a nation and world go so horribly wrong? When did it get to where "money and power" rule over it all? And where do you really find answers? I of all people, have always been able to "stand" within the power of faith and hope. I don't pretend to "cram" my own beliefs down anyone else's throat. Never have, never will. Everyone has their own personal and private feelings when it comes to how they view hope, faith and all of what might be considered "religious" in nature. But, the problem I feel is the "lack" of it all. There is little hope left. Medically speaking, is just one issue. Turn on your news every day. What do you hear that gives you any kind of true hope? Because we are finally backing out of wars, where we probably may have stayed out of them in the first place? Thousands that die daily due to lack of water, lack of food... and now we face yet another HIGHER scheme of things on the very thing that sustains us? FOOD!? Why? Because we lack water, we are facing drought circumstances that we have never seen in our own country since before the 1800's.... how can our "elected" officials sit around on Capitol Hill and justify the ridiculous insanity of "cutting" benefits for those that can barely afford to buy decent food to sustain us, much less "pay" for medications that although should be considered a "necessity" become things that are more a luxury. 
Those of us on a "regular salary", or disability, or making minimum wages... even those making a bit better salary, cannot possibly afford to pay THOUSANDS, even HUNDREDS of DOLLARS a month out of pocket for medications! I often wonder whose fingers are in whose pockets? If you could be one of these "minute" insignificant "bugging" devices that could fit in a clock on a wall, or under a lamp in some of our places in government, in our local doctor offices, within the pharmaceutical companies in the world, in the very places that things such as "lack of caring" goes on, how shocked would we be? How shocked would you be, just like a dear friend of mine told yesterday on her FB page. Her doctor wants her to have a "special type" of MRI on her heart. Yet, when the doctor calls the order in at the hospital, he is told, "that procedure" can't be done there. Now you tell me, if he is a doctor and he is that has been dealing with a hospital, outpatient or whatever type of facility in the same area for any length of time, he knows "what procedures" that place can do or can't do. Doctors are around for the most part long enough to know whether they need to send a patient to a "special facility" for a specialized type of MRI on the heart or not. SO, why all of a sudden does he get this type of information, that he must relay right there to his patient? He has to tell her that "I'm sorry"... for "some" reason, I can't get it done at that hospital? Then do they fully expect for us to say, Oh, Okay, well, if you find some place that it can be done, give me a call? How ridiculous does that sound? 
Just as ridiculous as a NURSE in my own PCP office, that has been seeing me now for well over 4 years, "hide" and NOT intervene as that nurse basically is allowed along with a "PA" there to tell my husband "well, if you don't like my care, take "her" meaning me, to the ER! What the hell kind of doctor is that? Talk about losing confidence in your physician! Then he is not even courteous enough to "check" on the situation and try and find out what the hell went wrong, and why the hell would ANY "PA" get her "feathers so ruffled" due to a patient and her spouse being concerned and just questioning why a certain treatment would be given, when there is a very strong chance that very type of medication is exactly what got me in the situation I am IN in the first place? If a doctor, or PA, or nurse, is that big of a "chicken" and they are NOT willing to try and get hold of the matter to straighten it out, and thus TAKE CARE OF THEIR PATIENT, who should have been NUMBER ONE, then how the hell do you trust any of them? If this had just been one incident, or a "new doctor" or someone "not familiar" with my complex case, I "may have" been able to justify a portion of their lack of brain power and intelligence. But, when you cannot even have your physician call you, return a call from you, trying to find out what the heck is going on, why would I bother to put my life in this medical "so called" professional's hands? 

I've written an email to a friend of mine explaining the total amount of crap I went through over the past about 7 days! I am going to post most of it here, and I know you are going to think I have to be making this story up! But, BEFORE I get more into that, let me tell you what just happened! Here it is BEFORE 8AM in the morning. My phone rings, and guess what? It is from LEXINGTON KY! NO NAME on caller ID, just that town name. A "woman" announces she is from "Humana" and asks for my Humana ID number!.... in the first place, it is BEFORE 8 AM CENTRAL TIME! IN THE 2ND PLACE, WHY WOULD I (I did NOT call them) give out my insurance ID number to someone I have NO idea is, what they want, and why they would call ME at this time of the morning? I told her I WOULD NOT give out that information, and in the 2nd place I AM SICK! Where were they this past two weeks when I tried to get them on the phone and get my ENBREL??? You sure can believe I jumped through 50 hoops to get anyone on the phone, it took them 10 days or longer to even get medication to me that I should have had 7 weeks ago or more. I probably WOULD NOT BE SICK, if HUMANA would have DONE THEIR JOB! Now, I hang up, and I call THEM BACK! Guess what they tell me... THEIR OFFICE IS CLOSED! NOW how can "they be closed" when they just called me and asked me for my ID number? Ever since I FINALLY GOT MY ENBREL LAST THURSDAY, I have had A PHONE CALL EVERY DAY SINCE FROM THEIR PHARMACY wanting to TELL ME HOW THEIR NEW SERVICES COULD HELP ME!!! THEY COULD FREAKING HELP ME BY DOING THEIR DAMNED JOB, GETTING ME my medications and not delaying me to the point that I am almost to the place of being ill enough to go to the hospital! THIS is the very KIND OF CRAP THAT I HAVE HAD MORE THAN ENOUGH OF! 
How funny it is WHEN I NEED THEM... forget it... you cannot get anything off of their website (although they always say go there), you can't get anyone on the phone, but boy they surely can call you day, night and weekend to tell YOU about HOW THEY CAN HELP YOU!!! 

Now, back to the Other issue at hand.... I've told most of the story... from this, I did NOT get my Rituxan.... due to HUMANA NOT wanting to pay at they should... the entire 'BIOLOGIC" ISSUE. So, when I am severely ill, with flares 6, 7, 8 weeks later, at my doctors office... and the PA decides even though I say nothing about any type of "infection"As far as I was concerned showed no and had no signs of a "sinus infection. Yet, she insists on giving me an antibiotic, after I am already very immune compromised due to NOT having my medication, having 2 flares, and she gives me of all things "Omnicef"! Now I am not sure how many of you check out medications. I am sure for the most part, all of us, or the majority of us with these autoimmune issues DO watch what we are given as far as medications. In the first place, many of our "autoimmune medications" do NOT mix well with other meds. It can cause all types of complications, thus we are probably for the most part pretty good about double checking medications, especially "new" ones we are given. BUT, as I say, what about those that are elderly, or they don't have access to look up medications, or they just "trust" what their doctors say, and take the medications. We are supposed to be "pro-active" about our own health. Yet, as I have found out, being pro-active with some physicians is just like stabbing yourself in the foot. They HATE patients that are educated! They DO NOT want to be questioned, and they fully expect US to believe them hook, line and sinker, without any disagreement. 
Well, even though I did NOT think I had this "sinus infection" I began the antibiotics a week ago, tomorrow. I took 2 that day, and Friday morning I took one. By Friday evening, something was just not right. I could tell my stomach/intestines/colon were not "happy". Of course antibiotics, many of them can upset your stomach. Sometimes if you "eat" with them it is better, but sometimes you are NOT supposed to eat with them. This happened to have been one that still I was quite disturbed over getting. Without being extremely ill with signs of an infection, it still did not seem right I would be given such a broad spectrum, high powered medication. I even mentioned that it had been YEARS since I was given these type of meds. The ONLY time I've taken them is when I go to the dentist and I am having work done. He prescribes "2" for me to take one hour before I go in for dental work. He does that due to me having "knee implants", shoulder implant etc.... Dental work "can" lead to an infection sometimes of those types of implants. BUT mine have been in place long enough now, that really it is not a huge concern. In fact the other dentist that does other dental work on my teeth, says that taking those now is kind of "old school". He does not even prescribe them, unless the implants are very new, less than a year old, or there is major dental work, that could possibly lead to a greater chance of infection. So, even with two dentists right here in town, there are two totally different opinions about giving this even when it could be "slightly necessary". Well, within 24 hours of taking these antibiotics, I began to have what I consider not just slight diarherra, but what I consider a type of "colitis' symptom, due to the medication 'Killing out" all of the needed bacteria in the colon. I went through this in 2010. After several abdominal surgeries, due to an issue with my gall bladder, and a collapsed bile duct, that landed me in the Methodist Hospital in Dallas for over 6 weeks... I got this type of colitis. I will NOT go into the gory details of it all, but I will tell you that I had NO CONTROL over it. I literally woke up wrapped in blankets, cold, and was covered from head to toe with diarrhea... this happened night after night... and I was so ill, I could barely even stand... the nurses would try and put me in the shower, half cold water, and had to clean me up, head to toe, several times a night (and I was NOT eating anything)..I was totally being fed with an IV line...

Well, that experience all came rushing back into my head once I realized that the antibiotic I had been put on is one of the worst for causing this type of colitis.....

Here is more information on it:

this is just one article. There is LOTS more, just do a Google Search if you would like to found out more....

Needless to say, I was very FAMILIAR with the signs and symptoms of this potentially can be "deadly" type of colitis.  It is NOT something to mess around with, especially if you already have a severely compromised immune system. At this time, mine is certainly severely compromised. So, as you or anyone in my situation would do, of course you are going to "question" why would you try and put me on yet another "same family" of antibiotics that COULD be causing this? Here they are as  I have in a redundant way said trying to treat me for a "sinus" infection, and I am worried about this type of bacterial colitis! thus coming back to me on the phone Monday morning and saying the PA is calling in "Keflex" was not what I expected to hear at all. I thought I was going to hear at the very least they would put me on Flagyl or Vancomycin, and then also possibly do the "test" to see if I indeed had this type of bacterial colitis. Never did I expect that she would in an almost flipant manner tell me that "the PA went to school, and SHE knows better"! Well, ummmm let's see here... did I excuse anyone of NOT knowing their job? NO what I was "questioning" was "what she was treating me for and why?"... Are you giving me "more antibiotics" thinking okay well the "sinus infection"??? Yes, again, the nurse NOT taking the message stating THE PATIENT IS CONCERNED ABOUT whether she has a colon problem, a stomach bug problem, or is it antibiotics causing this.... not one word of "can we try to see who is asking what" and "why" one person in an entire office can't put two plus two together to get a proper message through.

Now comes another issue in all of this. For six WEEKS, I have non-stop tried to get through to Humana about the Rituxan, what the deal is, why they are NOT paying as they said they would.... and  you can bet I heard everything but the right answer. Most of the time, I was either speaking with someone who has NO CLUE about a "code", about it being used for RA, or even what it was used for. After I finally drove the infusion center, and my Rheumatologist's office nuts trying to get SOME TYPE OF BIOLOGIC to take.... knowing that each day that passed meant me having more and more change of a severe flare, I worked my fingers to the bone trying to get medication, it was days and days and days and more days of waiting, paperwork, more waiting, more paperwork.... and then FINALLY last Thursday it comes in. I take it about the same time I the appointment to try and get the flare under control, before it got worse.

NOW, every freaking day, sometimes twice a day, and like this morning BEFORE 8AM my time, Humana (wow they really exist) CALLS ME! They leave messages, they want to talk to me this morning BEFORE 8AM, and the "woman" asks for my ID number before she even told me who she was,  or what she wanted. I politely, told her I was SICK, and they sure as heck did not make any connection with me while I needed them, yet now all they do is call day and night with their stupid automated calls, wanting to have me "call" them back"... for what????  there is NOTHING they can do or say now that will "fix" what I did need, when they cared to not even answer me back or call me back.

Yet, the huge looming question remains, how the heck do "we" fix this? Unless you have money, power, people you know.... and whatever else it takes to "get" what you "need" out of this kind of issue.

I am so totally disgusted with all of them.... and as far as how to "handle" any of getting these issues fixed... I am at the place, that I honestly don't see that anything will get better for us... only worse.....

With my "current health" as it is, and NO support from the very physicians that SHOULD be giving me support, I may not be able to make the very trip that I've looked so forward to and that is to go to DC in 4 weeks to give my "story", just so others someday do NOT have to deal with these things. Yet, I can't go if I am too ill to go!

I am so totally and utterly upset over the entire ordeal, that I am to this place that I am ready to give up! WHY! should I FIGHT for something that I have NO WAY of  Winning???? As far as I am concerned ALL of my efforts, ill or well.... sick, or feeling good are all for none.... This battle is just not one to win....

I am not sure I even want to continue to post on this blog, or FB, or participate in any type of organization anymore.... It seems it causes more aggravation, All I see is doubt and dismay in others eyes, and I hear it in their voices and I see it in what they are going through....

For me, I am beginning to feel and see this is a no win situation.... and for others they may have far better luck than I... but I know when it is time to throw in the towel....

Wednesday, February 19, 2014

"How Serious" is "Lupus/RA/FM... MS.. and so forth "Brain Fog"!?

Brain? Fog?   I Can't remember!?

I know for myself, I've tended to make a "joke" here and there... blaming something I misplaced, or did not remember on the "brain fog". I think in the RA... Lupus and all Autoimmune World, we use that not in a "joking" manner, to really joke about it, but because I can bet, like myself in the last few weeks, my "Brain Fog" has turned into no laughing matter.

I am in the very worst flare of a combination of Lupus/RA right now that I believe I've had since diagnosed 4 or so years ago. I mean from fatigue that makes me not able to barely drag myself around my tiny home, to so bad, I cancelled my birthday trip last weekend, to I just do not feel like do anything. The Lupus Headache  - nothing will get rid of but a huge dose of "corticosteroid" and even though I could barely do it, I managed to take a shower, and go slowly into my doctors office to get some medications. Not bad enough I have flares of both, but also a sinus infection plus some "wheezing" she was very concerned about. I had told her I have been "wheezing" for a bit, but just thought it could be allergies, so I didn't let it concern me much. I have an inhaler here, so this morning I decided to use it. I would not tell her that I've been having times of "shortness of breath" the past 4 weeks or so. I could not withstand another test, walk to get an X-ray or anything, so I left with injection done, called in scripts, that I have to pick up today... and got myself home.

I've had all of the signs and symptoms, from low grade fever, mouth breaking out, the Lupus Migraines, the severe fatigue, every joint, even the bottoms of my feet hurt, thumbs, all of my joints are stiff, swollen and hurt. I think I've gotten so accustomed to these stupid symptoms, I "forget" they are symptoms. I just assume they are things I have to live with. But, the one that has really set this flare apart, from every other, is the torrential "Brain Rain" not just a haze or fog... but the horror of ALL of my brain seems to be aged into the 100's or something. I can barely remember my name. I've decided I've got to make MORE lists, for the ones I already have. I cannot recall words, or remember what day it is. I can't spell words, or I forget the word I wanted to use. I have walked around now for the past 7 days in such a spell bound haze... going into a room, and not knowing why... misplacing things, can't remember if I took my meds, or a shower even. My concentration is none... I am barely able to read something and "have any retention" of what I just read. My husband "talks" to me, and I cannot recall in two minutes what he told me... I type everything wrong... misspelling, typing backwards, or just not typing right at all... There are just a NUMBER of "brain" involved things that I have never HAD such a horrible time with before. Sure I might have a bit of an issue at times, with something like a word, or the name of something. Yet, never have I saw myself in this horrible of shape as far as the brain portion of Lupus etc....

My fear, and I even feared looking it up, is that either the Lupus has done something MORE to effect my brain now.... or there are other factors such as MS, Myasthenia Gravis. I have not really came right out and talked about just how I fear what is going on to anyone other than my husband and Mom. I don't want them overly worried, but I've had to let them know that I may "act odd" or say something weird, OR I may just have to get on the sofa, and rest all day. I do have my Enbrel coming in finally tomorrow... BUT, if it has not been for HUMANA messing me around, I could have already had my infusions 6 or ore weeks ago, and I may not be in this kind of condition. That in itself is another story, and I believe I've hung that one out on the line to dry enough, that everyone is sick and tired of hearing my FIGHT with the insurance over my Rituxan.

So, today, or so far this morning, I've read more about the Lupus/Brain situation, as well as what do to, which much of which involves all of the horrible symptoms I've been having. Along with that, a variety of ways to "help" yourself with the pangs of "Lupus" and so forth.
Most of us are aware of some of the brain fog... as I had said above... it kind of becomes a ''running joke" when we forget etc.... most of the things I already do... lists, stickies, I-cal, and more lists. Making me more specific lists I think may help me. Of course as one of the articles said, if you DON"T write it down immediately, then you may lose what is was;)

I've also found myself, mumbling more, which I've "talked" to myself forever, but this is different. It is like I am almost in a hallucination of sorts. I've noticed I tend to be sitting somewhere, like the doctors office yesterday, and in my "brain" almost this odd movie plays... does not have a thing to do with what I was there for, or listening to.... yet within my mind, almost an hallucination WAS playing... so much and frightened me badly. It made me think I was losing my mind! You fear mentioning it, thinking someone will really think that the "padded" cell is where you need to be.

I find myself thinking I am between "asleep" and "Awake".... I know what is going on around me, but yet it is almost as if my brain took a quick trip somewhere else....

Which has been the most frightening symptom... Plus I find myself wide awake one moment, and within a moment..... it is just a very strange place to be..

Anyway, even though I should be either "here", writing on my book, or working on some of my Active Volunteer stuff, I think I am headed for the sofa for now. I feel like I can't hold my eyes open.... so, I shall possibly rest for now... and try doing something a bit more "prosperous" in a while....

Thursday, December 19, 2013

Introducing WAAD14!!!! Join Us for an International Online Convention of 2014!!!

World Arthritis Day 2014!!!!

Are you ready for WAAD14? Are you ready for the largest virtual gathering of nonprofits and autoimmune arthritis resources available under one roof?

Get ready... while WAAD14 is hosted for 47 consecutive hours ONLINE at a separate website/Virtual Convention site starting May 19th at 6am ET/USA, the Countdown to WAAD14 starts in March!

This years' theme, "A Day in the Life of an Autoimmune Arthritis Patient" will kick off in March with dozens of nonprofits from around the world joining forces to play "Amazing Race" type educational awareness games, all created and managed by your WAAD14 creators and Hosts, the International Foundation for Autoimmune Arthritis.

Get excited for WAAD14!

If you are a nonprofit and want to sign up please email

Saturday, November 30, 2013

Have A "Game" Plan?!! IFAA Does! Rocking Autoimmune Illinesses Right Out of the Stadium!!!!

IFAA ready to kick Autoimmune Arthritic Illnesses right out of the door!

International Foundation For Autoimmune Arthritis - Standing On Your Side of the Field!

This is one of the most incredible non-profits I've ever seen! Although "small" right now, they can just about outdo any of your larger non-profits in the way they gets things going! Another HUGE plus, EVERYONE in the entire non-profit HAS ONE OF THESE AUTOIMMUNE ARTHRITIC ILLNESS OR MORE! So as you ask yourself about things such as earlier detection, earlier doctors, labs, tests, medications and even almost more than that, EARLY EDUCATION AND COMMUNICATION can and will lead to an earlier remission, or even possible a chance of not even having anyone to deal with these illnesses again!!! From their "showing" at the White House, making a huge impact on Congress, to being able to have the ability to find other ways they can change the face of AAI's forever, this group refuses to take "no" for an answer! Please visit the link above and see just how the IFAA has already changed and will continue to change many lives!

Friday, November 8, 2013

Speaking of Prednisone - Autoimmune Arthritis… A "Necessary Evil"

Here is the site - "Creaky Joints"  and a Topic we all talk about quite often -- Corticosterioids!

Just about anyone  with any of these Autoimmune Arthritic Illnesses - Lupus, Rheumatoid Arthritis, Sjogrens, MCTD, UCTD just to name a few… has had the "pleasure" AND the "Pain" of these types of "steroids"… they are incredible & horrid also… read on….

Wednesday, November 6, 2013

International Foundation for Autoimmune Arthritis Illnesses doing to Make AAI - diagnosed, treated, & hopefully cured!

I guess you can say I am a bit "prejudged" over this incredible lady! Tiffany Westrich  - and here is who she is with…

FAA CEO, Tiffany Westrich talking with Dr. Stephen Katz, Director of NIAMS at the National Institutes of Health (NIH). He was very thrilled there is now an organization representing the Autoimmune Arthritis Diseases!

PLasee take time to see what all this incredible Organization has done and is doing to treat, diagnose more quickly, give an understanding to all about the autoimmune arthritic diseases, find more researchers so we can hopefully put them into permanent remission!


Saturday, November 2, 2013

AAI(Autoimmune Arthritic Illnesses & Our sense of smell (Odd or Phantom Smells), Sight, Hearing, Tasting, & Feeling?

I've noticed that often my sense of smell is either "off", strange, or my home, along with the outside around my home smells putrid!

I can walk around my home, as I did just this morning, and everything smells horrible! I was thinking to myself and mumbling that I really needed to "clean" because my house plain STINKS like my dogs left a "puddle" in every room! Now I know that sounds funny, and it is kind of funny, BUT in all honesty, I can walk into a room, or walk outside on my front porch and feel like my entire world is smelly. I smell smoke often outside. Which at times there are those that are grilling, or it is the emissions from vehicles. At this time of the year, people also are beginning to burn their fireplaces also. So, the smell of smoke can be truly justifiable at times in those instances. Yet, I can walk out the door, and smell everything from something "dead" like a mouse, to a "moldy" smell, to the smell of what I consider "bug spray" and the list goes on.

I have also smelled many perfumes that absolutely smell like "Raid" when I just smell them out of the bottle. Yet, they may smell wonderful once they are on someone. Now, I have this crazy smelling as I said as if my entire home smells like "the dog pee". I am a bit paranoid because I have two full grown "puppies", dogs, yet they will always seem like puppy's to me. They are totally house broken, but as they have grown a little older they tend to decide to get mad when we go out and leave them. I at times come in to a puddle of pee on my hardwood floor, which does NOT make me a happy camper. They both have anxiety separation issues, always have. Even if one of us is at home with them, they get upset because we are not both here.

Anyway, I began to do a little bit of research to see if those of us with these various form of Autoimmune Illnesses have issues with their sense of smell. And by "gosh" I am correct! There is definitely many of us that do suffer from various type of "smell" disorders. We do either have a "lack" of the ability to smell (Sjogren's is certainly one that can cause that), or you have a phantom smell disorder where it is not there but we smell it.

I've also seen people say that there sense of smell is actually "more keen" with some of this AAI's. They can smell things that are much further off than other people.

When it comes to all of our senses, smell, taste, feel, vision, hearing… they can all be effected in one way or the other by the diseases, syndromes and illnesses. I have double vision that came up almost a year ago. I've been through 3 eye specialists. Two of them highly specialized, being "Neuro -Opthamologists". After months and months of tests, lab work, and a temporal artery biopsy, they NEVER did truly FIND THE REASON for my DOUBLE VISION!! Thus they blame it on the Lupus!

I developed "Tinnitus"… of which the ENT doctor said " you'll get used to it"… there is really nothing they can do for it… you learn to "drown out" the ringing, whirling, buzzing noises…

Of course then there is the "Vertigo" - that also is not just my mind thinking I am spinning and moving… I DO spin, move and gyrate, at times without the medication, Meclazine… now I just learned a very interesting fact! There is a newer medication that came out called "VertiCalm". I saw it was for "dizziness" motion sickness etc… so I was of course once again "My wondering and wandering mind wanted to know what it was?" I look it up and it is exactly what I take that does not require a script BUT you have to ask them for it at the pharmacy, Meclazine. I've been using it for a very long time… for the vertigo, dizziness, and movement disorder. I take two every morning of my life, and sometimes when I have a bout with it, I have to take a couple more during the day. Now here it is over the counter, out from the back of the counter, and I bet it's going to be MORE EXPENSIVE, than the one I buy from behind the counter. I get like 90 or 100 tablets for usually between 4 to 6 dollars. Since I happen to find this due to a coupon for it, I will bet it is much higher than that for a lot less tablets. It will be interesting to see next time I'm out what the difference is.

So, I've touched on hearing, smelling, and tasting somewhat; along with vision.

The sense of touch I am not so sure about. I don't know that our sense of touching is really effected by any of these illnesses. I have problems with extremely "tender" skin. Sun is a huge "no-no". It can bring on a flare, or certainly make your "wolves mask" much worse, or both. Predisone, along with the other corticosteroids also makes my skin very thin. I bruise extremely easy, or just a small "knock" again furniture when I vacuum leaves terrible bruises. Some of those take months to fade. I have some that are just a "permanent" part of me.

Just to add a bit of humor to this really terrible issue as times with the senses. As far as "touch or feel" I know I have this "urge" when I go anywhere to look at new clothes, that I have to "feel" the material of everything. I am sure as a whole women do that when they shop. But, texture in fabric is a big thing when I am shopping for clothing. I believe that is just one factor of being the "female" gender.

I would love to hear from all of you in regards to these 5 senses. How if you are effected with your particular illness(es)?

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