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:   http://www.mayoclinic.org/diseases-conditions/antibiotic-associated-diarrhea/basics/definition/con-20023556

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....

Where Do You "Turn" When you are already "Char-Broiled" by Illnesses, the Insurance companies & Our Medical "Entity"?

How To Turn Over And Change A World of "Not "for" the People, but for The People's Money?

There was a time that I felt "age" and technology moving so very rapidly caused many to not "get the drift" of insurance, medical charges, medical information, & all that goes with that. Well, I am here to tell you right now "age" has nothing to do with any of those things being "confusing". I've found out quite recently, even the medical facilities, doctors offices and insurance companies themselves have no clue as to what they are doing! I've had to get a "crash education" in "diagnosis codes", in the "technical parts" of insurance, medical billing and coding just to get my bills coded, and paid correctly. Two of which I had dealt with since LAST AUGUST~ After 3 APPEALS including myself, my husband, and 5 other people at the University Hospital, working on these, WE NEVER did get Humana to pay those 2 infusions correctly! They continued to try to bill the "Rituxan" as "Part D", which is NOT CORRECT, and then they billed again, and Humana tried to code it strictly as if it were for Cancer, not RA, so that screwed everything up. Alas finally last week, after resorting to ALL avenues even the hospital threw in the towel. They helped me with financial aid for those two bills totaling over $3,000.00!!! They also have me "approved" NOW for the Rituxan infusions until August of this year. After Humana pays all they are going to the hospital will pick up the balance for me. :) Which is awesome news! BUT, in the mean time I was 7 weeks or more late with any biologic! I came down totally ill with two different flares, RA and LUPUS! Along with all of this serious dental stuff that is going to require a Dental Surgeon to probably have to pull all of my teeth, put in a couple of implants, and then put the teeth onto those implants! I go tomorrow to the dentist, but I know just from what I feel and see, I doubt there is anymore "patching". My teeth literally one day seem fine, the next they are breaking off at the gum line, splitting into halves,   and they are almost like coming apart, pieces sloughing off, and it just happens. No rhyme, nor reason. It is the Sjögren's, but all of that was discovered too late. My teeth were already headed down that road probably before 2008, when I first was diagnosed with these Autoimmune illnesses. Plus there is "little" they can do for Sjögren's. There are two pills, I've tried them both. I am still on one of them, but it is not helping really. I constantly have to sip on green tea or something, and I have to constantly chew gum (sugar free and with xylitol" in it) or my mouth is so dry, I cannot swallow, talk, nothing... plus I am constantly having ulcers, sores, sore throats, you name it... . I've already lost 4 teeth in just about 6 months, and I know right now, if these cannot be fixed tomorrow, I could lose at least 4 again, if not more. Now to find an Oral Surgeon, that can "file" this as a medical condition, which it is and it is well documented with ALL of my doctors and now two dentists, that Sjögren's is the issue, and I did have a woman at Humana TELL ME yes they will cover this IF it is a medical condition... and I even got so far as to having them send me a letter stating they will... I may still face having all of my teeth pulled, two implants put in top and bottom, then they almost "snap" the plates in on those to hold them. Regular "dentures" are not the answer for anyone with Sjögren's. Due to no saliva they will not hold in place, and would make my mouth probably less wet, etc. I also have osteoporosis, and it is in the "severe" range. So, that will also be a factor as to how they fix the problem. I could have to have "bone grafts" or some way to fix the bone, if I have lost enough that the implants may not be able to be put in! This is a living nightmare! And the sad damned thing is NOT ONE doctor, or really dentist until I began to discuss it, has tried or talked to me about this horrid disease. Yes, I have it. Yes, it is reeking havoc with my mouth, teeth, bone and gums, but till this moment has anyone offered a "real solution". The ONLY person who has even attempted to find out what HAS to be done, is ME! Plus, this is like major surgery. I am sure the oral surgeon has to put me to sleep, pull those teeth, and then I am not sure about the implants from there, and putting the teeth in. That all depends on my bones in my jaws, as to how it all plays out.... and now I face a major trip 4 weeks away to DC! I certainly cannot go with my teeth literally falling out of my mouth daily now a piece at a time! But, trying to get ALL of this done... no way, no how in 4 weeks! Plus, if things are not bad enough, I have this flare, I was put on steroids again, after an injection, the PA thought I have a sinus infection, which has been wheezing. So, she put me on "Omnicef" but a generic form of it. Well, I have not had any of the "Keflex" type of medications for many years. So, I am on it since Thursday. Friday I noticed my stomach not "right"... but it has not been anyway with the flare mess. So, I take the antibiotics, and by yesterday I have such a horrible, horrible scary case of the big "D" word, I cannot stay out of the bathroom! So, I get concerned, look it up and come to find out, this is probably a "form" of colitis, a secondary infection in my colon, due to it allowing other bacteria to take away too much of my "good bacteria" out of my intestines! I was not that concerned, but it kept getting worse and worse... and it is just I won't even go there... but BAD!!! So, I had already taken some Imodium a couple of times, then read this morning it is better to "talk to the doctor" BEFORE taking any of the anti-diareall's !!! Well what another mess we have here "Sherlock"! I certainly can't even leave the house like this, and now I have another problem on top of everything else. My Enbrel came in Thursday and I took it. But now I woke up yesterday feeling like someone literally knocked me on the ground, and took a baseball bat and beat every muscle in my body. There is NOT ONE place I can touch myself, that does not "hurt"... it is insanity! And who knows, is it one of the flares, medications, something new I am developing???? No biologic for too long, then a new one that I've never had??? I can guarantee "my guess" is probably better than the doctors as this point! That does not include everything that is on the "books" for me this coming month! I honestly fear I will be having to miss the DC fly in. I just don't think with my mouth situation, the flares as bad as they are, and everything else going on with me, I can take a chance to fly to a strange city, going through a 3 day seminar, then stay on through the following Sunday to see Jim's Step Mom. Hell, I can't even go to the store as I am this morning, much less drive to even Dallas! These diseases can really make your life a living hell. When you add on top ALL of the STRESS, with insurance, bills, just having surgery 5 weeks ago, and a few other things going on with "family", that I just found out yesterday, and that I am extremely upset about, my brain is at either go insane completely, throw in the towel, and cover me up for good. And NONE of this includes Jim's ENTIRE ORDEAL with a neck that probably needs surgery, a lower back problem that is not much better, and NO INSURANCE! And don't get me started on the "Indigent" Health help in our county!!! Talk about a joke! That is another complete chapter for my book, if not two chapters. SO!!! IN A NUT SHELL NANCY! You are correct, and it is even WORSE than many know. I just read yesterday afternoon, that "Obama Care" due to the "new insurance crap" may even make getting anything paid through Medicare, and especially Medicare Advantage Plans (i.e. Humana, and the others) even more difficult. They are planning to pay the providers "less"! Well hell, they don't "pay" them as it is. That is why our doctors are starting to not accept them! Because they bill for a 100.00 office visit, and the insurance pays them $3.00!!! or something ridiculous! I realize the medical system is screwed, doctors, facilities all of that is WAY< WAY over priced. BUT it is because the insurance companies PAY NOTHING, thus the circle begins, round and round. And who is stuck in the middle of it? Well us for one as patients! BUT who is it FUELING THE FIRE??? THE GOVERNMENT, MEDICARE! Absolutefrickinly! Yes new word... we have our dear CONGRESS and our Centers for Human Services (not Humane", but Human) to thank for this bill pile of bureaucratic bull red tape. And then it all falls on our shoulders, and we bear the scars all over us where they have just "shredded" humans out of any kind of true health care! It is a total fly over the planet, into another universe, complicated, ridiculous, "corporation greed" let's make money, NOT HOW WE CAN HELP PEOPLE! Thank you to ALL of our Congress, and I mean all of them... local, state, federal.... we vote them in and they vote us as "null and void"....

"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....

Trying to Absorb Everything that seems to be "bouncing" my way...or getting run over?

http://funds.gofundme.com/index.php?route=fundmanager

Now I am sure you are wondering what the hell I have put this up for. Unless you've been to my FB page, or have seen the latest "venture" that the IFAA (International Foundation For Autoimmune Arthritis), about now you are scratching your head figuring what else I could possibly have my fingers involved in now.

Well, the story began when I "found" Tiffany the Founder and CEO of what came from a bracelet, made with a bit of leather, a belt buckle, and was a "movement" until now they stand proud and tall as one the instrumental foundations of Patient Centered Research in Autoimmune Arthritic Illnesses. So, what does that mean to me, and then of course what does that mean to yourself? That is a very long answer that shall become clarified in the days to come, and in my book to come also. A portion of my book, will be about my relatively "short time" I've been with a Foundation, that I have watched make almost impossible changes in the way others, including doctors, researchers, patients, and people from around the globe sit up, take notice, and SEE the REAL issues that "we" the patients deal with daily.

None of our lives are "daily".... or the events in them are not for sure. We may get up in the morning, much more slowly than anyone else, "walk" some of the stiffness out. Next may come a cup of coffee, that it takes all of your energy in both hands to pour it in a cup. I've not truly been able to get a "grip" on the entire next few months coming up and all that is involved, until last night. 

After I have spent the last 6 days at least arguing over insurance, my biologic medication, the infusion center, driving my doctors office crazy, along with myself, it hit me square in the face, that in 6 WEEKS I will be going to Washington DC! Here I have been wanting to do this all my life. It has been a dream, for me to stand in front of the White House, hopefully not speaking to just myself, but someone even if people just coming to be those to take a look at the White House and happen to "hear" my story. So long, I've thought about what I would say, how I would say it, and what I would want to get across to the officials in those buildings. It is almost like trying to reach the "Pope" or a movie star, or anyone that is in any type of place of "authority". Your chances of really getting to even shake their hand might be slim to none. Much less get their attention long enough to gripe about your illness, what the government is NOT doing to help it, and what they are DOING WRONG to make it worse! My thought has been unless you have lots of money to "slide" under the door of any one of our local, state or federal officials, you might as well, jump in the back of a truck, while it goes 30 miles an hour, down a dirt road and spit... And when the spit lands back on you mixed with dirt... that is just about how much you would get while the officials in Congress scrape you off of them like they scrape mud off their shoes. 

This from here down was written this morning... I am have a very difficult time between what I feel are flares of RA/Lupus, and way overly stressed... I am a total mess, mentally, physically and emotionally... I am wondering why I even try anymore... it always turns out to be a mess for me, rather than a help.... thus the reasoning behind this post.. (I also began posting the bottom portion of this on FB and changed my mind. I decided to post it here, and just put a link in to FB...


LOL!!!! I have been seeing the new "T-Shirt" on their Foundation's Website and wondered about it. When I was filling out the registration yesterday at the end it asked for your "T-Shirt" size! That is when I got the hint we would be receiving one! Honestly, over the past week I've been really struggling with all of this. I have actually began a blog post that I am still working on about my own internal, some physical, but more "mental" revelations about how quickly all of the things that are happening in my life right now are coming on me so very fast! Much of it "good" things, but entangled in the "good" are some challenges that I am definitely struggling with. I have just taken an immense "slide down through the rocky side" of my "mountain" of autoimmune illnesses right at this moment. Since I've not gotten the Rituxan infusions as I should have weeks ago, all of my RA symptoms have hit me like I just ran into a brick wall. I know I am in not only a RA flare of sorts due to the part where the bottoms of my feet hurt, especially when I first wake up and try to put my feet on the floor, to the stiffness and pain in my toes, thumbs, ankles and fingers, which is making trying to type a nightmare. it is not that it is so much "pain", I do have that, but it affects my "ability" to type. I hit wrong keys, I am constantly correcting myself, or having to back up because I've spelled something incorrectly as I typed it, and so on. Then it the "mental" true "brain fog" that this time has me terribly aware that these illnesses are takng their toll on my body in several ways. My ability to type issues are also because of the fog. I tend to try and spell words, or type normal, everyday words, and cannot remember them, and have to stop and think about what I am trying to say, or again due to the stiffness it seems my fingers are constantly on the wrong keys. And I am at the moment "brain and physically "fatigued". I feel as if I have mentally been in a prize fight. It is just almost painful to think. I want to just scream I can't take anymore!!!!!! I AM SO UPSET about NOT GETTING MY RITUXAN, that I could scream! It is one of the most frustrating situations for me. That is the ONE biologic, that has "worked" more for me than any of the others. There is just so much going on right now I feel like I am on a spinning top, and each day it goes faster and faster. I am battling the insurance even over just getting the Enbrel. I found out it is the ONE biologic of TWO that Humana will pay for. Yet, I still have to Jump through every hoop you can name to even be on that. I even got the prior authorization myself and faxed it to my doctors office myself to make sure they had it. And now I've called the "specialty pharmacy" two days in a row, they see the script and yesterday the woman on the phone says, "well, it appears maybe they got the "prior authorization form" but they are requesting "more" information from your doctor??? What the hell more information do they need? I've been going in this circle with them now for at least 4 years and each year it gets worse, rather than better. When I first began all of this autoimmune illnesses whirlwind, Humana, rarely questioned anything. For the most part, even all the surgeries I went through even 8 in ONE YEAR, there was no hassle. Many of them were performed and the insurance never even need a "prior" request on those. Then it began about two years ago. I began to notice my doctors would try to send me to a specialist, and the specialist would not be a "preferred provider"... and I had not had that before. Then they would "piss and moan" over certain medications with these "prior authorization" forms... not many but a few ... year before last, it was SO BAD that the first part of the year January and February, they made me get a "PA"(Prior authorization" on JUST ABOUT every medication I had been on for 5 years!!!! Heart med, Muscle spasm meds, you name it, they wanted this "PA" form for it. I argued with them and the answer I ALWAYS RECEIVED FROM THE INSURANCE WAS "it it MEDICARE(the government) MADE ALL THESE CHANGES" thus "they" the insurance company HAD TO request these even on medications for my heart, blood pressure, stomach and so on. That was the most asinine thing I had ever heard of. I spent hours and hours and untold hours getting that nonsense stopped! My doctors of course were all annoyed, and I don't blame them! They "put a patient" with high blood pressure, or stomach issues on medications, they are on them for years, then all of a sudden here comes the very insurance that paid for them asking for the doctor to fill out forms? In the first place the doctors do NOT have time for this. In the 2nd place it as ridiculous! Well, all of that finally went away I think. Come last year I noticed ONLY if it was a medication that was new to the patient and for the most part a "specialty" med they would then request a "PA" form. Yet, even then, the doctor filled it out, faxed it in, and I had my medicine quickly, there was no wait, there was no 72 hour "review"... and I certainly did not HAVE to wait 10 DAYS or more for my "prescription" to be processed once all of the other stupid paperwork was done!!! To add insult to injury, then, me not really realizing that Humana WILL NOT PAY for any "specialty" biologic medication (even though on their website they will "price" it to you at your local pharmacies", and I had checked prior to all of this and knew my local Wal-Greens did carry it and they had a specialty department that did the paperwork and then would let the pharmacist know when it was all done and when he could fill the script. Well, guess what? Then I come to find out that Humana will NOT pay for the local pharmacies to fill these medications, it MUST GO through Humana's own "Right Sour Specialty Pharmacy"... so guess what that means, more delay, and it was delayed even further because the "local pharmacist" could NOT understand I HAD to have the prescription faxed over to Right Source!! I asked 5 different times to "fax" it to Right Source and kept continued to try and "run it through" to the insurance! And of course the insurance kept "denying" it!!! It he done it a hundred times, Humana is NOT going to pay for it, unless it comes from "their own" Specialty pharmacy! Wonder where the kickbacks etc go on that one?????? Of course FINALLY I honestly think my doctors nurse faxed the script herself to the correct place Monday morning. Then she gave me the fax number their and reminded me that she knew a "prior authorization" form would need to be sent to her and filled out, then sent back to Right Source! SO, I was lied to because Wal-Greens told me they had gotten the "PA" form. If they had then there would not be a call for another one I was told at Right Source, because it would have been in Humana's website, thus they would not NEED one, the one would suffice!!! So, let's start the phone calls and the whirlwind again! Now I had to "dig" through Humana's website (which I already knew the drill on this one) find that form, get online and fax that form to her (the nurse) at the doctors office. Because if I had WAITED for then "pharmacy" to request it, that might delay it for weeks because that mean the doctors office would have to dig it out, fill it out, and send it to Humana for approval. So rather than jump through another 25 steps, I tried to save a few and sent it to her myself. Which I am not sure even made a difference. For two days I continue to get the same response. Well, it looks like we are "waiting" for something... in fact yesterday's phone call to "Right Source" is what led me down the track to even when we receive all of the information it will take "72 hours" for review? What more is there to "review" when you have everything but it signed in blood and stamped by the President stating I need this medication!? And it just continues to float around and around within the spinning, ever spinning, world of what we should NOT have to go through! Now, with all of this, plus I KNOW without a doubt, it is not long, until the Sjögren's has taken everyone of my teeth and crumbled them to nothing. I have at least 4 right now, that are just "pieces" of teeth. I barely have any jaw or chewing teeth at all. And the ones up front are so fragile I fear biting into anything... I have my 4 bottom front ones that "so far" have not shown or I've "felt" them having issues. But that is just the problem. They can "seem" fine one day, and the next you are eating, and suddenly there is a "space" where part of a tooth was! No Kidding! It is insane. That is usually how it happens for me. And it does not have to be something difficult to chew and so on... just normal eating, and then my tongue will suddenly "know" something is missing... sure enough an entire side, or back of a tooth will be totally gone! I have two of my very back jaw teeth, one of which he could not even "fill it" permanently because the cavity was so deep, he said I would not be able to withstand the pain because of it being so near the root. So, he put some of the "temporary" type of filling in their but it has already itself became partially gone... and the one just like it began hurting and feeling "odd" yesterday, thus I am almost sure it will have to go soon also. Right now I would bet I have 6 that either need to be pulled or slightly a possibility a filling may help them. But since it feels as if an entire side of it is gone, I am betting all of them but possibly one have to be extracted. That would have me literally with maybe 3 jaw teeth in the top, and my 6 or 7 top and bottom front teeth... and those in the top are just "patched" together... they are trying everything to keep those in as long as possible.... So, I ONLY "saving" grace in the matter of my teeth is that there is a possibility due to all of this damage being from "Sjögren's. the insurance MAY pay for a specialist. In fact one of the "nicer" women at Humana even gave me the name of a doctor who is more of an oral surgeon that might be able to "screw" the teeth into my jaw bone (seeing that my jaw is not totally messed up with the osteoporosis) because "dentures" are NOT the answer for anyone with Sjögrens'. Due to no saliva or very little those will not "hold" properly in the mouth. I just am not able to fathom the amount of pain, expense, and what I will have to go through to have these teeth "fixed" or something done with them. Hell a "root canal" and crown is over $3,000.00, much less that kind of thing to be done! So, within the spinning web of ALL that is so amazing, and yes my birthday is Saturday... all of the horrid nightmare of bad stuff keep putting a damper on the good things coming my way. I am ready to throw in the towel... and just sit on the sofa, and forget it all. I've fought this battle way too long, and way too hard... and I am reaching the place that that mountain top is way too high for me anymore... I don't know where to turn... and I certainly really do not want to go anywhere over the weekend... I know it is planned to go, but between money, and the operation, and me not feeling well, I am just not in the state of mind to go anywhere right now. Hell i need to go grocery shopping and I'm having a huge struggle in trying to convince myself to go and do that. I am just tired of it all.....

Feeling As If I am A "Deer" in the "Headlights" - Autoimmune Life

The Shadows and Inner Glow of An Autoimmune Life

For days now, I've again been struggling. Struggling in my own mindset. Struggling into between those shades and shadows, where there truly is no "black", nor white.... only shades and hues a what is a gray tone in a life that I so felt like had returned to colors.

Several months back, even just a couple of weeks back, I had found what thought was my precious "voice" again. Not the one that blabs at my Mom, nor fusses at my puppies, or rants and raves over stupid people, stupid insurance companies, and all of the wrapped red tangled web of a life called AutoImmune.... Life... that it maybe. I felt that just maybe I had unraveled some of that tangled, mangled ideology from my own soul, notice I think I still have one of those, yet sometimes it surely evades me. I was running in and out of the shadows, seeking where I felt I had found what I had been searching for now for more than a year. I can't really give you a "look" into the looking glass of those panes that I so seek, but when I find them, you too shall know it.

For then is when the words of wisdom just flow onto the screen. I type them, not even thinking about what the next word might be, not ever thinking will this sentence sound off, or will the audience that reads this "get it". None of those empty spaces even enter my somewhat empty head. Because, from my heart comes the words that are pure gold. That gold that the very streets of heaven are paved in. Yes, I do believe that the streets of heaven are paved with the purest of gold. I don't talk much about what most call "religion" or religious "beliefs". I have found just as many say, you never discuss religion or politics, hell not even on the internet, lest you want to cause the fight of your life, run your blood pressure sky high, and still be not able to have anyone "see it your way".... kind of like the humor in the fast food restaurants burger in the drive thru.. "Oh, yes you can have it "your" way"... well you may be able to have it your way... but I often wonder when you ask for yours to be unique or different, to be the "troublemaker" in the long line, what happens to that burger as they are preparing it for "your way"? Scary enough to wonder what they do with any of the food during the course of a day, much less when I am that troublemaker. I have to have "MY english muffin" without cheese and just the sausage. And yes I want strawberry jam. I sometimes wonder if they don't scrape that cheese off on the bottom of their shoe, wash it down, and throw the sausage down on it, then put it on the griddle quickly to "dry it off"!!! I have to laugh, because of the horror stories all of us have heard about where people get upset with the boss, or want to be a smart ass in Jack in the Crack, or CracDonald's as we like to call them, and do some thing hideous to the food. It happens. I just pray it is not going on where I stop and get my food from.

So, raising cane with anyone in the political or religious walk of life, is like stepping into a burning bunch of coals. I believe every one of us have a tad bit different view on both subjects. Thus I try to avoid the discussion of either as much as possible.

I have learned that the "loudest barking dog" gets noticed more. Or the person that puts their face, their name, and their own accomplishments especially those that one feels are true talents out on the internet for billions to see, may just be fortunate enough to be SEEN!!! It has SO worked for me lately. I have gotten into the "right click" (I hate that word "click"). It gives me connotations of the cheerleaders all standing around the lockers in high school making fun of all of us "homely girls". So, even though click may fit, still not in that stand point. Certainly not a bunch of snot nosed, immature, girly girls, with their short skirts and the large "pom-poms" (interpret that one as you see fit)... but more like this entire group of women and some men also, that have been brought together in a commonality of making illnesses that are still not getting enough "attention" out there for MORE research, MORE educations, EARLIER detection, when means a greatest chance of LESS damage to the entire body.... surely the JOINTS for one!

I've been dealing with once again a "loop" .... caught between the "doctor" and what he KNOWS IS BEST FOR ME! What the people down in their "pre-determination" of insurance should be trying to get straightened out, not take "no" for an answer, call the patient and tell them, you will owe 3,000.00. Your "insurance " said, you will "owe a co-pay" on the medication? This is crap!!!! If they would even bother to wake up they should know I DO NOT pay a "co-pay" or might I say "co-insurance" on an outpatient treatment. I DO pay I guess what you would call a "co-pay" which is $100.00 for an outpatient procedure that does NOT involve surgery, MRI, CT scan or a nuclear test. It   is very plain and simple as they nose on their faces. They cannot give me this line that they don't know... bull, I am NOT the only patient with the Humana plan I have. There are MANY patients on a Medicare Advantage Plan like Humana, and they know for the most part what benefits are before they even bother to call. What the DO NOT do, is get their "diagnosis" coding, and proper wording from the doctor done, THEN call. So, when they do not have the proper "type of procedure" coding for an "infusion in an infusion only setting, for medication that is a "biologic" that I CANNOT administer to myself. So, since they don't have their own paperwork in order, my insurance tells them I owe of course, as I said my $100.00 co-pay. But, due to the nature of how the "infusion" medication has to be coded, Humana comes back with well the patient will owe 20% for the MEDICATION! NO, I do NOT pay separate for a medication I cannot administer myself. It is NOT a Part D drug!!! It must be given in an infusion center, through an IV process. I surely am not going home with an "IV kit", a bag of lactate ringers (or whatever they use now), an IV pole, a bag of Rituxan, and am going to put the IV in and give myself the medication over a 5 hour period!!! In the first place that is about the stupidest thing I've ever heard of. In the 2nd place why are people that have NO CLUE what these medications are, what their use is, how they must be given... why are none of them educated???
You can believe when I was a "Patient rep" at the hospital for 6 years, I better "know" my stuff. Including what certain medications were for, how they were given, and what things meant as a whole for a patient whether surgical, illness, ER... of course I was not a nurse, BUT I was expected to be "educated" on much of the terminology and how some procedures were handled.

If that is not bad enough it is almost unbelievable what I have gone through this past three days just trying to get our local Wal-Greens pharmacy to "fax" my Enbrel Sure Click script over the the "Right Source Speciality Pharmacy".... I have been on the phone with this pharmacist at LEAST 7 times...
What part of "Fax" the script over does he not understand!??? I had called the Right Source, asked them exactly what they needed. They told me to have this pharmacy just fax over that script, that the "prior" authorization was probably already in the "Humana" system, thus they can get that and they can fill the script and mail it to me... for some reason, one that baffles the hell out of me, this idiot here at WG KEPT trying to run it THROUGH WAL-GREENS!!! Each time it denied it! And I kept seeing emails coming in and for my own sanity, I was just about ready to jerk his head off his neck through the phone, when I CALLED for the 8th TIME today! Thank goodness one of the girls answered the phone, took down the information and said she would make sure it got handled tomorrow. The only ridiculous thing she said was that it was "against the law" for them to "fax" a script over???? BULL!!! I've had them had to "fax" scripts over to other pharmacies when maybe one does not have the medication, so they "fax" it to one that does... or maybe it is cheaper and/or so forth... and there was never a problem... hell most of the scripts they get now are either "faxed" OR send via the computer, from the doctors???? Anyway, the phone rang about 15 minutes later, it was guess who??? I would NOT answer it, because if it was him, it was NOT going to be pleasant, not for him at least... so my husband answered it... "he" told my husband he had "faxed" it at 5:06 yesterday afternoon... well why did you try at 4:56pm try to put it through WG again!????? He waited until they were closed there, then faxed it... again it is delayed due to stupidity!!! What is worse, this man is supposed to be a PHARMACIST!!??? If he cannot understand the simplicity of "fax a script" how they heck will we trust scripts to be right????? Frightening thought at the least.....

Well, I am saying... this is an end to this post... I am a BIT CONCERNED that all of a sudden all my new traffic I was having suddenly just took a nose dive.... within a few days... anyone know possibly why???? Maybe not enough of my "own posts" and more about other stuff???? I have no clue, but it does concern me...

I am actually working on my book. I have about the first 10 paragraphs that I began on it late in the evening yesterday. But, this freaking bad headache from hell is giving me the blues... it is truly messing with my eyes ... and just reeking havoc with my vision... but at least I HAVE BEGUN!!!

I have NOT announced the name of it yet, BUT I am seriously thinking about putting the name out... I shall give it some thought... My fear at first was someone would try to "steal it" from me... but, I really don't think so...

Rhia

One morning early a couple of years ago, when we were heading for OK for the day to take Mom to the Casino!

"National Wear Red Day" For Women's Awareness about Heart Disease!

DON'T "Stall" JUST GO!!!!

My story is told by the very first of the posters below. I AM A SURVIVOR! Of NOT only ONE heart attack but I am fortunate enough to have SURVIVED TWO!!!! My first one at 40 years old and my 2nd on at 50! I HAVE NO PLANS of "repeating" that process again! PLEASE be aware that all too often the "signs" and "warning symptoms" of an MI for women are so much different than men. I know that is true. My "1st" one, the "warning" I had was my ankles swelling about 2 months before the actual heart attack. I gave it not much thought. I had made a mental note to talk to my doctor next time I went in. Then on January 9th, 2001... after 3 days of a mild "chest discomfort".... I gave my doctor a call... (after a dear friend in Malta threatened to call the ambulance all the way from Malta to Ennis TX to come get me, if I did not do something- and Thank God she said that and Thank God I listened)... I did call... thinking a diagnosis of "bronchitis" or could be a start of pneumonia... so when I spoke to the nurse... she told me to hold a moment... she came back and told me, I needed to stop whatever I was doing, and get to the nearest ER pronto! Well, I still was kind of like "yeah whatever"... here we go to the ER, for a bill I can't pay, and some antibiotics he could have called in.... so, I was ALONE... I got in my car, and drove with the flashers on... 25 miles to the "nearest ER".... and I got out of the car very calmly, walked in and said my doctor sent me because I was having some chest pains... they took one look at me... and rushed me through the doors, into a room... hurriedly getting me into a hospital gown, and quickly getting an IV started, doing a EKG, blood work, chest X-ray... and it was not long until the doctor walked in to tell me I had already had a heart attack, or were in the middle of one... and the blood work indicated I may have massive heart muscle damage. By then they had already given me that 2,500.00 injection to "stop" the heart attack... from causing more heart muscle damage.... talk about in shock.... I was in shock... I was taken the next day after I was stabilized to Baylor in Dallas... where they did all kinds of tests, the nuclear one, an angiogram, where I got to see one of my issues... a rare occurence... the artery coming into my heart was in a spasm... thus part of my issues was that. But, fortunately, I DID NOT have a great deal of damage... some but nothing like they expected. I had gotten to the ER just in time... another 30 minutes and things may have been much different... but I got the medication in time to stop the muscle damage, thus that is why my blood work showed such a very high rate of enzyme levels... not due to the damage, but due to the medication stopping the damage at just the right time!!!! 7 days later, I went home, no stents... with just medication for then.. and up until right at my 50th birthday... I was lucky enough not to have much issues with my heart... although as we have found out since then... I have RA, Lupus, Sjôgren's, along with some other autoimmune issues, that may have contributed to me having a heart attack at 40! I was "fit", walked 5 miles a day everyday or more, watched every bite of food that went into my mouth, was a a perfect weight... and was "doing" everything right... but don't let that fool you either... doing it all "right" still may not "stop" it from happening to you.... so, please DO NOT feel stupid... if YOU FEEL something is "off", or "odd"... you know your body better than anyone... and YOU have some "remote" feeling it maybe your heart... don't wait 3 days like I did! GO THEN to your NEAREST ER!!!! It CAN SAVE YOUR LIFE!!!! By the way, TAKE AN ASPIRIN... do that first, then go... don't stall, just go!!!! 

More Greats News on the Heels of Lupus and Autoimmune Diseases

Alliance for Lupus Research and Lupus Research Institute Partner with National Institutes of Health to Accelerate Drug Discovery in Lupus

Lupus Research Organizations Welcome Big Science Push to Drive New Therapies
for Lupus Patients

We are delighted to share that the Alliance for Lupus Research (ALR) and the Lupus Research Institute (LRI) have joined the National Institutes of Health (NIH) and industry in the Accelerating Medicines Partnership (AMP) launched today to speed new paths to treatment for lupus and autoimmune diseases.... read the rest at the link below......

http://lupusresearchinstitute.org/lupus-news/2014/02/04/alliance-lupus-research-and-lupus-research-institute-partner-national

Trying to Place "priorities" in the right spot! Difficult to do when you suffer a Chronic Illness

I just said that I was going to go "rest" and watch a movie with my dogs. After all, I am just barely a week out of "major surgery", even though laparoscopic, nonetheless, major anyway, as my Surgeon, Dr. Sullivan reminded me yesterday. I went in for my week recheck, knowing he would turn me loose to ride my exercise bike... Well, his answer was an emphatic NO! NOT for 6 WEEKS!

I gave him a bit of an evil look, and he began to tell me... okay ride that bike, incumbent or not, and when you come back, and those "mesh" panels have pulled away, the next surgery will be big incisions, and not pleasant at all. So, of course to the best of my ability, I am abiding by doctors rules... so today at least although windy as hell, warm enough that I made my 30 minute or so jaunt around our long driveway. So, I did get some exercise in. :)

And I realize he is right... if I did something stupid, and pulled what he has done loose, then the repair of that would be a much more difficult surgery, that would probably mean a hospital stay. I still can't fathom riding that stupid bike would hurt, but okay, I will behave for now.

I am still sore, still purple from my navel, all the way down to my thighs... yes EVERY PIECE of me, is "purple". I won't give the "details" but you can get the jest of it all, since the hernia's are right at the pubic bone, and blood travels downward, when healing begins, thus due to gravity, several "parts" on me that are not usually purple sure are now.

I had to laugh when I was telling him. He basically just came right out and said it, and I sat giggling and agreed ALL of me was bruised and purple!

I am just so disgusted with everything right now, I won't even begin to get into all that has happened in just a few short days... but I will say between the ignorant people at my insurance company, and the stupidity of the "billers" at the hospital where I have my infusions, along with (if I get another automated stupid Call from Humana I am going to scream)!!! I want to say to that recording, QUIT spending MONEY on these stupid calls and pay my damned bills! Of course they see "coding" is wrong, but rather than question it, they just pay it wrong or right... and even if they "underpay" or believe me I had them overpay a year ago or so, and called to tell them they paid for blood and lab work that DID NOT belong to me... 4,000.00 worth! And honestly, I don't think they cared... But they sure as heck care when "their" premiums aren't paid..

I spent most of my walk in deep thought today. In fact my husband said I looked almost upset... but not really at all. I am more in this place that I have to "split" my time. I desperately have to go allow myself to work on my book, and post more of my "own" stuff here on my blog. Not that what I am doing is not awesome, because it is. But, more along the lines of I HAVE to for my OWN SANITY get back to writing my book. No more of this waxing and waning... or feeling fearful... it is time to put that "foot" in the door, and go for it.

So, that is where my thoughts have been this afternoon.

Actually this morning, I just about have the "mini-manual" and all of the "Hubs" and sites set up with the correct permissions and so forth. I just hope they will be able to decipher my manual.

But, I HAVE GOT TO ORGANIZE and split my time up between my advocacy and my own blog and book. I have been so far out on a limb, with all of my new responsibilities with all of the Advocacy and Volunteer work (which I am THRILLED to do), but in between all of that, I've kind of lost my own "path" up the mountain to get my book written and published. Along with not overwhelming my blog, and FB page with too much of one thing, yet not nearly enough of "me"... which is why I do this... for YOU and for ME... so I have got to stick Rhia back into the picture as of exactly who I am, and not lose all contact of what my very real goal is... to write that book, and to have the very best blog I can.

While I walked... I talked... to myself. I have been faced with "one" reason as to why I won't start the first chapter... and "fear" is the only thing I can come up with is "Fear".... not sure what kind of fear, or what I am frightened of... but it seems fear holds me back from putting my eyes on the goal, and putting my fingers on these keys. As Natalie Goldberg says, WRITE...Write Daily... even if you fill notebooks full of crap, write it anyway.... and in my heart of hearts, I know that....

So, if I seem a bit "pre-occupied", or a bit distant over the next few weeks, I am in the process of mentally sorting out all of this. I want so badly to get that book written I can almost taste it. So, as Tiffany said today in a post on Facebook. I have got to put one foot down and the next one in front of it, or it shall not write itself....


I think right now must be a very difficult time of the year for many of it seems.... each person I come in contact with, is having hell on some level....

May be would should have named this Hell 2014!!!!

Please Come By and Meet Two More of Our Blog Leaders from IFAA's "Systemically Connected"

We have two more "live Facebook" chats this week, and both are going to be wonderful..

Lorna Krump and her blog "Life With RA is a Pain" will be on January 29th at 9 pm (ET) at the Facebook General Room for the IFAA! Lorna is just an incredible Health Activist, Blogger, & lady that lives with several different Autoimmune Arthritis Illnesses. Her blog talks about life with these diseases, and so much more! I know you will really enjoy hearing Lorna!

We also have Polly, "Pollyanna Penguin's RA Blog" as she tells about her life with RA, and also gives us more details on her award winning blog! Drop by on January 28th at 3:30 pm (ET) to hear her live FB Chat!

WAAD14! You Just have to "be there"! May 20 and 21st!

World Autoimmune Arthritis Day! May 20th and 21st 2014!

Mark it on your Calendar!!!!

For More Information see:

https://www.facebook.com/WorldAutoimmuneArthritisDay