(Part 3) My "intuition" was right... it just never ends... I feel as if all my life will be one big ball of a foggy brained, Autoimmune RA/Lupus/Sjögren's and who knows what else of a disaster...

Part3 - How many Opinions does it take from who many "Physicians" before you feel at ease? Peering into the Looking Glass of Autoimmune Illnesses, and deciding where to begin.... and where to END? 

Can you put your "health" in the hands of those that are supposed to be "educated", who have been through testing, who have taken a "vow" to  - "Do No Harm?" - and these days what does that small sentence truly mean.... "Do NO Harm"?

Trust... Trust who? Well from what I've experienced over the past 3 to 4 weeks, I am not sure who is the real insane person around? The doctors, the insurance company, me... or whom... but I do know NOTHING is getting better at all.

I called my pain physician's office yesterday. The pain that has decided to plague my body for a 3rd time in about 18 months has reared its ugly head again. I tried to tell him last week, when my medication for the pain pump to be refilled was NOT THERE! It was sitting in some office in Phoenix AZ! So, I go without my "extra boluses" so I do NOT run out over the weekend and the pump start "beeping"... and run out before Monday. I had already been "hurting" worse for days before that. Given the fact that I was NOT given my biologic when it should have been given, then surgery, then not being able to do anything for 6 weeks because of the surgery, then I got sick and was ill for weeks, turned around and low and behold the beginnings of not just ONE flare but TWO! RA and Lupus! Then another 14 days to try to get SOME KIND of BIOLOGIC the insurance WOULD pay for, and then waited for the prior authorization that went to the wrong pharmacy. So, that all had to be redone and sent to the proper place. All the while I knew my body was in the stages of rebelling. I felt it each day getting worse. Worse to the place, that once again I could sit in this floor, scream, cry, and beg... but that would not do a thing, but cause me to hurt worse.

So, after NO call back from my pain doctors office yesterday, I knew something was "wrong"... where his head is, and why after going through ALL he has watched me go through. Knowing my extreme health issues, or supposed to be knowing them, I get a call from his "nurse" who is a jackass anyway. I already had issues with her a couple of months ago over NOT getting my medication called in, before I ran out. Well, today was the day for me to call it in. When she called, I knew something was up. She goes on to tell me, that my doctor is calling me in some.... and he thought it would help with the "inflammation"... Well red flags went up everywhere... so out of my mouth came is it an NSAID? She paused, said wait a moment, and of course came back to say yes, Well, right back at you NO! Now this doctor has been seeing me since 2008, knowing ALL of my issues, and he knows I've had not just ONE heart attack but TWO! That is NOT including the GERD and all of my stomach issues. So, why the hell he became so "weird" about all of a sudden NOT upping my pain meds for a month is beyond my capacity to understand at this moment. After ALL he has watched me go through, and also portions of this beyond my control, their own crap with my medication not being there, thus I had to cut my meds "way back" for like 5 days... I already was in severe pain due to the entire biologic stuff... and now all of a sudden, for no reason, he decided to try to give me an NSAID? Hell, I would BE ON THEM, IF I could! I just looked at the phone as she said, well, I will call your other meds in Monday? What the hell? I am supposed to run out Monday, and they MAIL THEM FROM DALLAS! She knows that she cannot wait until the last moment to do that. OMG, I was ready to explode! Conveniently, he is out of the office "today". mmmmmm, he always is when you "need" something. I am still just blown away by his attitude, and I had even picked up on it, when I was at the office both times. Something at his office seems "off" now too.

What the hell is up with doctors all of a sudden? I've never seen so many weird changes of attitude, of how they treat their long term patients,  and the plethora of "lack of caring"... that I've witnessed in just three weeks.

Honestly, I trust my OWN judgement at this moment. more than I do several of my own physicians. I get the impression that their "realms" of health care have just about flown out the window when it comes to any patients who are on Medicare, Medicaid or a Medicare Advantage Plan. I've said it once, twice, and three times, plus... the government has their fingers so tied into all of it, that doctors cannot possibly do their jobs taking care of patients, all the while either the DEA, FDA, Medical Board, Medicare, Medicaid, other insurance companies, the government as a whole as ALL breathing down their necks.

I believe at last count, I've seen and heard at least 5 or 6 articles about "bad pain medication" in just the past week. Everyday over the course of this week there is yet another "gripe", whine and bitch about "pain medications" and addictions. Let me tell you right now, unless you have walked for ONE DAY, hell ONE HOUR in the severe amount of ever growing pain that myself along with so many of us deal with, you cannot imagine what that feels like, You cannot imagine in any way shape or form, how your entire body feels like it is a hot burning coal of fire.... from the tip top of your head, all the way down into the bottoms of your feet.

Then let's see. You have a job, you need to go to work. You need to take care of your home, your kids, your LIFE! HOW can anyone stand up and "deny" something for someone that they know will IMPROVE their quality of life?

The saddest thing about all of this.... it is just getting worse day by day... you have no where to turn anymore... family gives up, spouses leave, you are in nothing but a place of despair. Where do you go, which direction will lead you to an answer?

NO ONE, and I mean NO ONE should have to SUFFER THIS TYPE OF PAIN! Not one soul, should have to endure the kind of brain rattling, aching, like someone took a baseball bat and beat you from your toes to your head type of pain.

Our bodies are marvelous machines... when they are well oiled, taken care of , don't get knocked out of alignment, they can do some magnificent things. Yet, you allow your body to  get run down, draw upon some strange illness, whether it be a bacteria, a virus, some kind of chain reaction in our nervous systems, or just decides it is just going to run on 4 cylinders instead of 6 or 8, you are in one screwed up mess.

Just as I took a break for a few minutes, I saw an email come in from MedPage. I had been taking their newsletters for a long time, then stopped for awhile. About 2 months ago, as the latest and greatest news kept breaking about this, that and the other, when it comes to the health care industry (should say profession)... industry... yes, just another "brickness" in the wall I fear...

I come across this article. Much of it sums up exactly what I have been trying to portrait through my own words in these (parts... up to 3 now) posts about all of the crap that flies around throughout the entire medical world.

I will post the URL in this when I get my own "fogged" wisdom out of a brain that feels as if it has been drug through the mud... and not much med for sure... Why is it that Medicare in itself had doctors spend BILLIONS of dollars on "electronic systems" that now cause MORE red tape, MORE work, MORE PAPER, more time... and MORE Of everything BUT the ONE thing doctors are to do. spend TIME with their PATIENTS! In the "age of technology", when "phone" messages fly through the air, and not over a wire... when you can connect your computer to the internet and never plug in a wire, does it NOW take more papers than ever to see a doctor? I've been seeing my same pain specialist now for at least 6 years, for all of the exact things... yet I had to "fill out" an entire new set of paperwork that was about 10 pages of crap, they already knew and had on me. It was a waste of time, money, and they probably never looked at it what so ever. I would be willing to bet it went right into the recycle bin. Now my husband is a first time patient, and he sees the doctor for the first time, I can see "filling out" forms. But, my gosh, about 10 pages of that was just "stuff" to either initial or sign. And it is just exactly what the article I read talks about. MORE of a doctors and the professionals time spent screwing around SIGNING CRAP that means nothing to a patients level of care! When your physician has to spend more time looking down at a "whatever kind of lap tablet" that thing is they carry around now typing on, rather than examining you the patient, listening to you the patient, checking your heart, lungs, looking over your skin, everything else on you.... but honestly, I have watched my doctors lately squirm when they see me coming with my yellow or hot pink piece of paper they know is "my list", I can see them wanting to jump out of the window and run. Mine know I am GOING to have questions that I fully intend on getting answered before they leave that room. No more of going "unprepared". When I am off to the doctor, especially for a follow up that I've had the appointment for now for months, or I am seeing a new specialist for new symptoms, I will have them in that office until I feel I am satisfied with the answers. Yet, I've watched my own PCP one time set there and talk for an hour with me, then the next he stands with his hand on the door knob just waiting to catch a moment, that he can quickly escape. I realize he has other patients. I also know he does, thus I will not "over step" my grounds. But, I feel I deserve my "allotted" time. What they do though, is "allot" that same amount of time to about 6 patients, then that is there fault. If they overbook, just like the airlines do, then someone is going to have to either wait, or be hurried through. Normally, I find I am either the one being hurried through, OR I am the very LAST one called in for that "time slot" for sure. And what about this new thing of bringing you back to spend another 2 hours in that damned ice box cold exam room, when you could be sitting at least out in waiting area, catching everyone's germs as they come in! Nothing burns me up than for me to walk in, and 3 or 4 people come in behind me, all stating their appointments are scheduled the same time as mine! Hell, mine can't even see me and make a decent diagnosis and treatment plan alone with just me, much less 4 or 5 other "sick" people in the mix. Then of course here comes the nurse, asks all the questions, half way gets down what you say, takes your vitals, and says "okay" I will get all of this logged in and he/she will be in within a bit.... yeah right.... a bit my butt... more like 2 plus hours later, you have worn the seat completely out of your pants,  you have stretched, walked, watched the same pictures of their kids go by in a digital frame that have been there for years, looked out the window, listened to their elevator music/radio and all of the whispering, crying, hollering, and just about the time you are ready to explode, here they are "cordially" explaining about the emergency, and being "sorry" for being late... yeah right where the hell is my $25.00 you would charge me for being late? Some how that shoe never quite fits over on your foot, but it certainly does theirs.

I am so totally, utterly, completely, within, without, absolutely SICK AND TIRED... OF THE ENTIRE MEDICAL SCENE, that I could literally jump off this house, land on my two damned hurting legs... and I probably would feel better than I do right now!
What makes this even worse for me, is that this time the "brain fog", is more like a brain super mud... no transparency, no light, no even haze, just a thick mass of, I am not sure what I am saying or meaning from one moment to the next. I am catching myself repeating things in my postings, emails, even to what I say to Jim and Mom. Honestly, I cannot remember that I did just "write that" in the last post. Or that I told Mom that on the phone yesterday. I can't remember I saw this movie a month ago, or there would be no way for me to ever get home without a list. Whether I need 5 things or 50, nothing seems to "stick". All just seems to be sucked in a black, muddy sludge... along with all of the intense physical pain that surrounds me, and engulfs me.

I know people must be just thinking "oh, she is just having a bad few days", I am not one to "repeat" myself or forget what I just said. I do at times, but this is so much different...

continuing now on Sunday the 9th of March

I've tried to decide exactly how I want to handle the several glaring issues staring me down this next couple of weeks. I've  thought about everything from getting my teeth fixed, and how the heck I was going to get into that specialist in Dallas BEFORE they all fall completely out! This is NO LIE! I put the coffee on at 2:00 am this morning... yes the clocks rolled back and rather sleep you would think, but nope not me, I am wide awake. I happen to hear some of the neighbors coming home, opening car doors and slamming them, and their music just a blaring... yet my household, other than myself knew nothing. Jim has been "ill" again with flu like symptoms, so I decided or we decided I did not need to be exposed anymore than I had to. So I've been disinfecting everything. So, I went to take yet another BC powder, and I always have to have a small bite of something after I take one. they are quite unpleasant especially if any of it does not go down with the first drink. So, I grabbed a tiny piece of dark chocolate that was sitting there in the fridge. Now of course it is cold so it is a bit harder than not being out for awhile. But, just as I put it in my mouth and began to chew down on it, I felt something hard in my mouth. Well, it was not that bite of chocolate, because nothing was in it. So, I go "digging" around and find an entire back piece of one of my top back jaw teeth out. About the time the coffee is ready, I pour a cup and still something felt "odd" about that time I feel another piece of something hard, like a little sliver of some kind. Yes, sir it was another piece of tooth, BUT it came from a different tooth on the other  side of my mouth. Then I got to my computer, went to take one of my medications, and again I feel something "hard" in my mouth (not the pill) ... and again for a 3rd time off of another tooth, a chunk fell out! 
So, here I am at 2:30 am standing in my kitchen, literally watching my teeth fall apart. That was NOT the way I intended on spending my Early Sunday Morning. In fact, I had the intention last evening of possibly going to a new church this morning, depending on how I felt. This severe pain in my legs has just about sent me to the nut house, honestly. My head is not on straight, the brain fog is just beyond belief, and I am so utterly disappointed with the entire world right now, I am not sure where to even begin, 
My story sounds like child's play compared to some I realize. But, I tell you when you have been through what I've dealt with in the past 8 weeks or so, and don't forget it is just now a bit over 6 weeks since I had double hernia surgery. In fact this is really the 1st weekend I've been able to feel like I can do some things I had not been able to yet. I did vacuum the house, and I've done some bending over and picking things up out of the yard, trimming back some of my bushes that will hopefully come out soon... I still have not been on the exercise bike yet but that is due to the leg pain. I fear that my legs may hurt worse. With the entire situation with my pain doctor and his witch of a nurse, I assuredly do not want to get to hurting any worse if I can help it. 
I have SO MUCH I NEED  & MUST get done, or I won't be able to make the trip to DC. That will just break my heart. I've even thought about shortening the trip for myself, and coming home Friday. then let Jim stay until Sunday. That way the dogs only have to be watched after on Thursday and Friday until I get home whenever, and then Jim would fly in on Sunday and I'd have to go and pick him up. I am just not sure I can go yet at all, not in the shape I am in at this moment. But, it could be I would be able to at least make the Fly In... get to meet his Mom, and then they could have a really good visit, and catch up. It's been over 10 years since they have seen each other in person. So, it is totally important for him to try and go. Of course he also has so many issues with health, mainly severe arm, neck and back pain, I am not sure he will go and can withstand the trip either. 
His idea is "well I hurt if I am at home or in DC... well that is true but when you are at home... you can have your own "nervous breakdowns" without someone else knowing it. 

There is a great deal more I want to say here; so this post may have a 4th portion to it. 

I am not sure if I will do it that way, or just call this one "finished".... and begin anew ... probably begin new. Due to "perspectives" I realize that not everyone will "agree" or "disagree" with me on some things I've said, and believe.... 

But, I do believe that "WE" all of us .... talking now about the Chronically Ill Patients,  with illnesses that take away all that is good in our lives, and turn us inside out and upside down... Autoimmune Arthritis... and all of the other Autoimmune Illnesses... along with Chronic Pain, people suffering from FM (which I still believe is an autoimmune illness)... Chronic Fatigue Syndrome... and the other things like my friend just discovered... she has "Chiari"... where a portion of her brain stem is literally gone down into her spinal canal and is being "crushed"! It has taken all of her life of fussing, crying begging, screaming, tests after tests, and in a "test" for something else, they "found" this syndrome she was born with. 
due to the nature of this malformation... and the unbelievable story that it has taken over (I think she is about 50 years old, but she looks like she is 35) :):) for them to find this... she also has Lupus...  of which she is being treated for... Here is a link that explains this malformation... she does not know yet if she faces surgery or what... but by gosh anyone would be totally freaked out if they got this diagnosis after all these years.

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Please comment.... I want to hear from YOU!!!!

PART 2 - Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)

since this story was "ongoing" until even right at this moment, I've decided to bring the "rest" of it to you in a 2nd part)

Thus... this is a continuation of my prior post....  (PART 2!) -

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?...

First of all I want to bring something to your attention, that my own Pain Physician brought to mine last Thursday. I felt after I had written the 1st part of this, surely that "ongoing saga" would end. Well, folks, I was mistaken, and here is the "rest of the story"....

I am not sure how much you have paid attention, but when was the last time on any "piece of medical documentation" (i.e. especially insurance and so forth) have you actually seen a doctor or physician called a "doctor or physician"? No sir, probably not in a long time. Now, the term "provider" has taken over the entire realm of medical professionals, our "Primary Care Providers"? What the hell is that? I consider "PCP" to mean Primary Care Physician. It was well pointed out to me, that in the 1970's, the terms like doctor, physician, nurse, and all of the "correct" titles of our medical specialists out there suddenly disappeared. Almost as if "David Copperfield" had came in and took them out of the language. Anyone can be a "service provider". Your plumber is a provider of service. The guy that takes your groceries out to your car, also is a "service provider". What about the mechanic that works on your car, "service provider". Well, she or he, DID provider YOU with a SERVICE! But, did they provide you with a medical item? Did they check you for an infection, take your blood pressure, write down all of your health concerns, and then turn those over to the next professional, your physician, that certainly should know more about your health and body, than the tires on your car. Good question. Same way with us. If you start looking at insurance paperwork, bills, anything medical, you will begin to notice, you are no longer a "patient". You are no longer someone who is ill, and is in need of a doctor. You are a "client", or some other manner of terminology that takes the "medical" portion out of it. Now why would this happen? Well, as my Pain Physician explained it, it was mainly due to "Medicare" and of course then the insurance companies that knew if they "took out" specific terminology for people such as physicians, nurses, patients, and so on... and put in generic terms such as "provider" or "client", then alas they can "charge a different price for things". They can take what should be just what it is, a physician's officer, and turn it into a "business", with a board of directors, and do you think those people sitting on that board of directors cares about all of their "doctors, nurses, medical professionals, and the patients?" Well, more than likely they are thinking about the "stock holders", or the "political power", or the "loop holes" that can NOW be created, because this is not a medical doctors professional office. It is a business, for clients. 

I found a very interesting article about this. After my Pain doctor and I had a very long conversation about how Medicare, Insurance, and the entire realm of our Medical Professionals, doctors, nurses, labs, hospitals, clinics... are going straight down the tubes, while those "fat cats" sit up on Capitol Hill, laughing in our faces, and could care less if I have a Lupus and RA flare! So what? BUT, if I could for ONE DAY deliver HE or SHE with the severity of pain, stiffness, fatigue, the LACK of any quality of life, could not go to a meeting or to work, could not clean the house, or go shopping. If THEY could have each and every symptom many of us go through in just 24 HOURS, I wonder where they would be looking, crying, begging, and doing everything in their own power to have a physician DO SOMETHING. Plus they had to fight the pharmacy, the insurance company, the doctor due to his fear of giving medication due to all the red tape, how long do you think it would take to make some HUGE CHANGES on Capitol Hill, and in our Doctors offices, pharmacies, insurance companies, and I would bet that those "lobbyists" that make those big bucks for supporting charging 2,000.00 for a 5.00 bottle of medication or more... all of that would be put to "bed" quicker that any one of us could shake a stick at. 

Boy, talk about having the "wool pulled over many of our eyes"! Let's face it, those of us "fighting" tooth and nail, almost dripping blood just trying to get SOMEONE, ANYONE to help are NOT stupid people. But, we have become so disenguaged, disenchanted, tired of the battle, lost hope in the true meaning of what this nation is SUPPOSED to stand for... become those that are giving up, because we do not feel we can win against Congress. Whether it is state, local, Federal... and all in between those with MONEY DO... and those with OUT MONEY do WITHOUT!

Here is the article link and if you do a search you also will be able to find information on this and why it took place:

http://www.healthnewsdigest.com/news/contributing%20columnist0/From-Physician-to-Provider-Can-Doctors-Put-The-Genie-Back-Into-The-Bottle_printer.shtml

I release this gentleman goes on to talk about "Concierge" type of Medical Care. In many ways, it would make total sense. For us that do NOT have insurance. For those of us who must pay cash. These physicians in many ways would make "more money" by charging the patients on a "cash basis" than what the EVER see from an insurance company! 

I don't know about you, but when my "Explanation of Benefits" comes in from Humana, and in the first place a doctor has charged $450.00, for a 3 minute consultation, right there you know things are screwed up.  But, take a look at what the insurance "really" paid that physician? He charges $450.00. The "insurance" gives a "negotiated" discount of $395.00. Let's say my "co-pay"was $40.00. Well, let's see. The insurance paid him a total of $15.00! In the first place, I PAID MORE in a "co-pay" than the INSURANCE DID on the actual bill. And guess what? My insurance paid a surmountable $15.00 for that visit. 

Now I am not sure about you, but something sounds too fishy in the fish tank on that one. What about these bills (and my husband STILL argues it is NOT true, but it is)... you go into the hospital for a "routine outpatient surgery". The outpatient portion of the hospital bill goes to the insurance company for this and it is $15,000.00. Your co-pay is $200.00, of which they quickly make sure you pay BEFORE THE SURGERY! You get the "EOB" in a few weeks. Okay there is the charge for $15,000.00. You paid your $200.00 co-pay. The "insurance plan" negotiated with that outpatient clinic that they would pay $300.00 on that procedure. So, they got "billed" $15,000.00! They were told the patient owed $200.00, which you paid. And the insurance paid an entire amount of $300.00! So that means that bill in total was paid "correctly" at a total of the $500.00. What about the other $14,500.00? Well, that outpatient clinic has to "write off" that, because they were told that on the one procedure, it should only cost an average of $500.00. Thus the rest they "eat", basically! Now before you think WHAT??? No wonder they can't stay in business! NO ONE STOPPED to think that the procedure you had may NOT have cost no where near $15,000.00! Let's say on the average it costs $550.00 for that same thing to be done over the nation. SO, who charged whom TOO MUCH, and WHOM paid whom too little or too much? I worked in a hospital business office for 6 years, which was about 5 too many, as a patient "counselor". In other words, I was the one trying to get them to pay their bills. Well, I also did a great deal more than just that. I "refiled" claims, helped them get the insurance to pay, and so on. NOT any more! Boy, "if" they file it, you are lucky. And to get them to "refile" a claim, is nearly impossible! Plus, if I had TALKED to any of my patients the same way I have been spoken to by those in the medical business offices these days, I would have lost my job the first week I was there! I cannot begin to tell you that I've been called everything from an idiot, to a moron, to told I was stupid and should just pay the bill! And that was the "nice" people! Yes, but it was NOT so nice, the times I am correct. When I FINALLY get to the RIGHT person, and I AM CORRECT, they filed WRONG, and then called me an idiot when they told me my Mom owed over $500.00 for a surgery, that she only paid $200.00 for the MORNING of her surgery, I can tell you that ALL of the women in that "office" are NO LONGER employed there. It literally took me 6 months, over that really, hours and hours of phone calls to them, to the insurance company, and visits when I was basically told to get out of the office.... and THEN A LETTER TO THE PHYSICIAN! Guess what! Within 3 days, there was an extremely NICE gentleman that was HEAD over that outpatient facility, that begged, sweetly, and apologized 20 times for "their horrible mistakes". And how he told me that he "thanked me", because they had also BILLED OTHER PATIENTS, for MONEY THEY DID NOT OWE! MMMMM... wonder how many elderly people paid those bills... and no telling how much... and then hopefully got a refund! 

If you cannot get anywhere, I can tell you a letter to the proper physician, usually works quite quickly. Especially when he is a portion of the Board of Directors, of the medical facility! But, more than once, even over a huge issue from when I was so ill in 2010, and spend way over 6 weeks in two hospitals. Again after months of fighting, I wrote my doctor a very explain and thorough letter, and within about 5 days, the entire situation was a mute point!

Alas comes to the NOW what I shall call the 2nd portion of a "Rhia's Week from Hell" with doctors, medical facilities, pharmacies, and the like.

I did the "stool samples" for the "PA" Monday, a week ago tomorrow. They were taken in, and I found out easily that they could have been processed within a couple of hours, no problem at the hospital. But, no the nurse from hades told my husband it would be 3 DAYS! Well, as he had told her, I would be dead by then. As he tried to explain again for the 10th time, We WERE very concerned about this HORRIBLE, unstoppable diarrhea I had. Again, not a budge... just another comment about "take her to the ER" if you don't like what we have to say! 

So, three days went by, and at that time, I was NOT well yet at all. In fact the flares were worse, I was  even more weak and fatigued, and all I knew to do was NOT take those antibiotics for sure, keep hydrated as much as possible, rest, and try and keep something bland in my stomach. Then I found the natural probiotic (IF we could find it in this small town) MIGHT help. I had read several people giving it rave reviews. Thus since I was NOT going to the ER, unless I got much worse, or if something else happened, we did what we could do ourselves. Well, it took about honestly 9 days, I believe, but first back to the days for the "test" results. No phone call, no email (they usually email me labs etc), nothing. SO, Friday, I called. This is truly the answer I got. I asked if the results were in. The girl on the phone said, well yes, they are. Then she said well, I will print them and lay them on the "PA's" desk. Well, I knew then there was NO WAY that chicken woman, nor her nurse would call me back. And so I was correct. About 7 hours later, I get a call from a VERY new. very young nurse there, and she said. Well, the PA said there was no bacteria in the lab work. And THAT WAS IT! NOT anything like, well how is she doing? Did she get any better? What about the Flares? NOT ONE DAMNED WORD!...NADA... ALL I heard was no bacteria, and click... that was it! Which, I already expected! But, the audacity of a "professional" that is supposed to be a PA, to my doctor who has been seeing me now since 2008, and HE is the ONE that usually IS EXTREMELY CAUTIOUS when it comes to me! In fact the "last time" I saw him, I had bronchitis. That was about 3 months ago or less. He told me then, YOU are very complex. You can go from a mild cause of bronchitis, to being in ICU on a ventilator within hours! I ALWAYS take special efforts to insure you get exactly the care you need due to the autoimmune issues you have. NOW, from that to his "PA" basically telling me to kiss her butt... within less than 3 months time! Wonder if they have PROBLEMS THERE????

*********** NOW. there is MORE to the STORY!!!!!!

After a very long drawn out affair in getting the PAIN PUMP FINALLY refilled on MONDAY, that also took forever, even my pain doctor just has this "odd" attitude. He seemed to be almost more cordial to my husband (and he is a new patient) than me, who has been seeing him since 2008. I NEVER did get quite over to him about the severity of the pain I am going through, and I am STILL going through yet this morning... 

This is NOW Thursday at almost NOON on March 6th! I am in still SO MUCH excruciating pain, I could just fall off the Earth right now and be happy.... for at least I would NOT feel so CRAPPY anymore! 

And again the ongoing "Rhia's Murphy's Law" continues. Rather than have 3 "things", mine are like at 53 things and climbing each day. Again, as I've said over the past 14 days or so, this has turned into total insanity.

AS I just said, today is Thursday. On Tuesday, my Mom had an appointment with the jackass doctors office, but just for labs. She was also told that he would not be in the office until after the 25th of March. So, they moved her appointment to then. Well, she went in Tuesday for the labs, and you know how she is, she is VERY nosy. :) Well, after asking about so many "new faces" and she is right, everyone that used to be there is just about gone. The past year each time you go in either everyone in the front office is different or the nurses are different... it is just nuts. Well, first of all she found out the majority of the employees that are there now, have been there LESS than 9 months. That right there tells me something is very wrong.

She finally asked where "Dr. Blair" was? Mom told them about the conversation of him being out until the 25th of March and due to that her appointment was changed to that day, rather than next week and so forth. Mom said she could see them all "huddling" in the hallway down from the main front door of the office. I am sure probably decided what Mom would either ask next or how to handle it. She found one of the nurses that have been there for awhile, and the one thing is that our Dr. Blair, with a wife and THREE stair step kids, like 5, 3 and less than 2 or so... are "splitting the sheets" so they say. Undoubtably his wife is divorcing him. Well, does not surprise me, because first of all he is NEVER at home... never... plus the "nurse" he had for a very long time, all of a sudden quietly "disappeared" about 7 months ago... and she was beside him for everything! Where he went, Nursing home, hospital, weekends, nights, whatever, she was with him. I kind of got the impression that their "time" together may have not been "all" work... but I don't know that at all. That is just something I observed even 3 or more years ago.

Anyway, it gets better. About 2:45 in the afternoon my phone rings, and it is the doctor's office. They said "Ms. St...." and I said yes, you mean my Mom? They said no, you. I said oh, well okay, you have me. What's up? NOW (funny how "lab" work changes suddenly)... this nurse is saying that the SAME PA that told me there was NOTHING in the lab stool samples on Friday last week, all of a sudden DOES CONTAIN a BACTERIAL TYPE YEAST - kind of like Thrush! I almost dropped the few teeth I do have in my mouth out on the floor! My question was " What did you say?" Again she repeats the PA's, name and said she needed to let me know they called in a script for me, because I do show a "bacterial type yeast issue" in the samples from last!

Well, I was in such shock, dismay, mad, angry, pissed, ready to slap the wall, kick my trash can, call them liars.... and of course,  I said , well, okay. She tells me to "stop" a med I usually take for one day, take this pill, then I can go back to my regular meds. Now how the hell a stool sample, collected a week ago yesterday, that shows the results arrived back at the doctors office I think late Thursday night, and Friday seemed to "show nothing wrong", ALL of a SUDDEN, guess a bird did it. ;) and now it DOES SHOW something wrong!

My first thought, and I am almost 100 percent sure I am right, me getting that phone call yesterday, was ALL tied into MOM, and that lab work she had done about 2:00 pm yesterday in the office... and all of her questions led up to someone deciding it could be that THEY BETTER go LOOK, since my bet it NOT ONE SOUL saw those lab results until yesterday. I thoroughly believed they were printed, put on the PA's desk or possibly the Doctors, and they told the nurse to call me back and tell me nothing showed up. If I were a really betting soul, I would be betting lots for sure.

I also believe that after Mom's inquest while she was there, did some shaking and moving.  I am sure our doctor heard it all... and you can believe he probably has those results, and he had looked himself yesterday and saw that there WAS A PROBLEM! Also, I had asked Friday for those to be sent to me from the labs. I ever got them. So, yesterday, I asked the nurse to please find somebody that can send those labs to me today! And this is now I know how new the bunch is... I've had 4 people in the past couple of weeks tell me that have no clue how to "upload" or work with the "patient portal"!!!??? WHAT!??? That is what it is for... so WE can get OUR results etc... and not have to wait for someone to copy it, mail it etc... with the few keystrokes it takes, it is on my portal and ready for me to read. So, within about 45 minutes sure enough it was on my "portal". AND right up AT THE VERY TOP... the first thing that was "abnormal" and way out of range was the "bacterial yeast infection"!!!

Then I go to the dentist yesterday morning, thinking he was going to begin "patching" and working on the ones he could. Well, nope, he ONLY looked, and said well I see at LEAST 6 holes (in 6 different teeth)... 2 or 3 at least hurting on the right side so badly, I cannot stand anything to touch them. And guess what... he is out of the office until next week .... and he can't even begin until next Tuesday... and he has osteoarthritis so bad in his hands... he cannot do many things. like he can't extract a tooth at all... and all the time he works on you...he moans and groans... I feel for him... he is not that much difference in age than myself a few years older, but basically his career is almost gone... and it sucks... BUT it also sucks that now I have to wait IN PAIN until next week. And further more, he won't really even know about whether he can "patch" anything... once he begins looking they may ALL HAVE TO BE PULLED! So, even that has been weighing on my mind... I have the other dentist here that my dentists sends me to when it is something like having a tooth removed that he can't do any longer. But, the more I wait the worse they get. So, I am trying to decide whether to just go to the other dentist for all of it... but I do know he charges quite a bit more also... and if I have that many... then even just to pull the damned things will be over 100.00 EACH! I might as well go to the oral surgeon, have them all pulled and begin on those "snap in" type of dentures. Which if Humana will do as the woman told me on the phone, and PAY for it since this is caused by ILLNESS, then the money is not such a huge issue.

Besides with the way things are looking, I am facing dental implants, even though these dentists are not exactly for them, if you can keep a tooth in your head. Well, I agree. Besides my hair, LOSING my teeth was something I swore I would never be able to live with. Well, guess what? Guess I am living with it.

So, then let's deal with this pain pump issue. It finally got refilled Monday, lock me out for 24 hours while the new medication made it's way into the spinal canal, and then I could use my boluses. Well, I thought at that time, from there it would be a good possibility that my body may "adjust" to the Enbrel after a couple of doses, my pain pump would be back as is, hopefully for the most part this stomach mess is going away, BUT we have a dramatic weather change. A couple of days ago it went from 70 DEGREES at 2AM and by 8AM it was dropping quickly. By Noon of that day it was WELL Below FREEZING and the wind chills were sitting at a new record of about 4 degrees. I knew two days before, that we were going to have one hell of a change, my entire body was screaming out about it. Sure enough it hit... and the pain just went down hill faster than the temps did... as of now, the pain is in so many places, and It hurts is so many different ways... I cannot begin to even describe how badly it really is.

I don't know about the dentist yet... and how I will handle it all. I took my 3rd injection of Enbrel this morning...  and I know it is early, but I do not see any difference, in fact I feel worse. Now Jim has the chills and body aches again, and has been feeling "flu like" symptoms since last night.

ALL of the lists, of lists... of the list and the other lists that I made... are NOT getting done... I can't seem to think about one thing for very long, other than PAIN! If I get up and do something, of course it takes my mind off the pain. But, then I am NOT getting anything else done, and I don't have anything ready for the trip in less that two weeks. Under the circumstances, and if things do not dramatically improve with my pain and health, there is no way I would make the trip anyway. I am so fatigued, run down, hurting, not sleeping, could care less about what I eat, anything... I have had everything from  a piece of cake for breakfast to graham crackers, apples and peanut butter. Or toast, or you know mainly something I don't have to chew very much. I was drinking coffee yesterday morning and slivers of teeth were coming off! And I was NOT eating anything!

I tell all of this, and there is yet much more to finish this... so there maybe a 3rd "method" to my already slim to none, to insanity of my brain before I am through with it.

I will say this.... I am working on doing some things for the Arthritis Foundation in regard to some advocacy stuff a couple of them asked me to help out with.

I want to ....talk about there 3 BILLS - Congressional Bills... pieces of Legislature that are going to effect ALL of us.... especially those with chronic pain, chronic illnesses, autoimmune issues... plus Pediatric issues also.... here are the numbers of them and a brief description... if you have time... take a bit and go to really SEE and UNDERSTANDING the critical issues of these... and just how much worse things will be if we don't make changes NOW!

There is much more on the Arthritis.org website! Take a look under advocacy and you will see what they are addressing in 2014 as priorities with Congress. Write or email your Congressional Leaders, Senators, House of Representatives, the President of the USA, the head over Medicare/Medicaid.... and any all you can find that have to do with these bills and laws, or any others pertaining to our health and well being... call, email, twitter, post on FB, snail mail... but DO SOMETHING! If things were not so BAD as far as Medicare and that entire ordeal.... I, nor many of you would be in the horrible shape we are in.....

 Patients’ Access to Treatments Act (H.R. 460)

http://www.arthritis.org/advocacy/advocacy-priorities/high_costsharing/


H.R. 1827, the Pediatric Subspecialty and Mental Health Workforce Reauthorization Act

http://www.arthritis.org/advocacy/advocacy-priorities/pediatricrheumatologist/


"Post-Osteoarthritis and Rheumatoid Arthritis" in the Peer-reviewed Medical Research Program, Congressionally Directed Medical Research Program of the Defense Appropriations Bill, FY2015 


http://www.arthritis.org/advocacy/advocacy-priorities/dod-research

Part 3 to follow!

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....

DREAMS DO COME TRUE!!! Even for the weary and broken hearted!!! This is HUGE NEWS!!!!!

OKAY!!!!!!!!THIS is HUGE!!!!!!!!!! About 3 weeks ago I got an email from the Arthritis.org organization. It was for a "grant application" to go to the get a complete GRANT AWARD to go to the 2014 Arthritis Foundation's Advocacy Summit in Washington D.C. in March... ALL EXPENSES PAID!!! Well, of course I figured I would never hear back, and about 10 minutes ago I received an email from a lady there and I AM GOING TO WASHINGTON D.C. IN MARCH TO BE THERE AT THE SUMMIT...ALL EXPENSES PAID!!!!!! PMG!!!! MY OTHER DREAM to stand on the "White House Steps" and "tell my story" is NOW A DREAM COME TRUE!!!!!!! I have read the email 5 times and I still cannot believe my eyes!!!!! This is so huge words again cannot express how  many emotions and feelings are with me right now!!!!!! It will be March 24th through the 26th!!!!  I've got to respond and of course it is YES!!!!! I am not sure exactly what I said in that lengthy grant application but SOMEONE IS LOOKING OUT for me now!!!!!! Lord, I can't even type!!!!!!   Rhia





                                                             

       

                                            http://www.arthritis.org/

I will give more details tomorrow when I am still SHOCKED, BUT a bit back down to "Earth"!!!!! I have to say, and I do not want at all to sound conceited, BUT HONESTLY I am PROUD of myself, and I feel I truly deserve this opportunity to SPEAK OUT for ALL of us suffering from these diseases!!! Diseases that more often than NOT RUIN Our Quality of Life!!! Believe me, if the Lord does let me get there, every thing I do and say will represent ALL of US!!!!!!   

Great News on the Autoimmune Illness Front - "Molecular "Gene" Dance in Autoimmune System

I had just got through emailing one of my friends who also suffers from the horrid effect of your teeth from Sjogren's.  Then I find this article! Of course this is not "just Sjogren's" but can mean another advancement in the world of "changing the face" of ALL Autoimmune Arthritic Illnesses and more.

Great Article!!!



http://www.medicalnewstoday.com/releases/270928.php

Chronic Illnesses/Autoimmune Arthritic Diseases - Do You "always" HEED Your Physicians' Advice?

Must you "think" you have to do "All" Your Doctors Tell you to do?


First of All, the "post" below in red is a post I began yesterday evening on Face Book. When I began really getting into the "subject" matter at hand, I KNEW this would make for a HUGE BLOG POST! This is something that just about everyone of us has dealt with one time or the other. If not, then you probably don't go to a physician's office very much!  So, I will let you read the "red" portion - then under it I will "further" write about the title of the blog... "Do You ALWAYS HEED YOUR PHYSCIANS ADVICE??





Well GOSH!!! A MIRACLE HAS HAPPENED!!!! I am already HOME!!! This is WAY too early when you go to our PCP!!!! IF your appointment is at 2:00pm. Usually you spend until about 4:30 pm waiting in that tiny room, staring at the walls! We only had to wait 45 minutes!!! Talk about a joke! Why the hell he insisted Mom come I have no idea. All HE needed was ALREADY there, from Mom's Cardiologist as I SAID!!!! (Twice)... and rather than address her other issues, he begins to exam the stupid shoulder! Then he proceeds to tell her "he dos not think it is a rotator cuff tear" and told her to do two exercises and it should get better!!! Now we never said anything but that it was bothering her. But we did mention we had seen a doctor about it to the nurse. Now, I know for a fact that the "clinic" where my heart doctor and our orthopedic surgeon is DO NOT GET ALONG with the clinic where our PCP, food doctor, my new GYN doctor etc., and also my surgeon who is supposed to be the hernia surgery! So, all he did is mix Mom up. Now she is "questioning" whether to even have the MRI. As I told her number ONE the Orthopedic surgeon is the "expert". And the PCP, is very intelligent, but he is NOT a specialist. SO, I told her to take all of that into consideration as well as how the shoulder feels and is doing (she seemed to think it is better today... well yes, she has not used it in a couple of days, thus of course it feels better. YET, I also told her a doctor is not GOSPEL as far as His "recommendation" as myself, I DID NOT BELIEVE even after FOUR DOCTORS told me there was NOTHING in my left lower abdomen... I KNEW THER WAS!!! So, I went to a doctor until someone knew enough to find the issue. Thus I did, it is two hernia's and at least one needs to be repaired! As my husband and I talked about a while ago, even when we were "growing up", we were "taught" that our "doctors" are like "Gods"... they know it ALL and WE MUST DO AS THEY SAY!!! BULL!!!!!! OF course you NEED to pay attention and for the most part take your doctors advice. BUT it is NEVER mandatory you MUST do as they say or not say..Ultimately it is YOUR body, you know it better than anyone... and if you do not agree, either just don't do it, or do it, or find another doctor! I learned about 25 years ago or more, I NEVER think my doctors know everything, or do I think they can DO NO WRONG! As a whole the majority of our physicians are highly educated. the continue to be educated, they pass board exams, etc... BUT THEY CAN MAKE errors... or just because they say something does not mean you have to agree with it a little, a lot or at all!!!! Actually this is a HUGE issue, and I am going to put a big blog post up about this very thing.... from first of all, they are "human"... second of all, not all of them are "nice" especially surgeons... and so forth... it will make for a terrific blog posting:) I'll work on it tonight and in the morning and post here a link when I have it completed!






Onto further discussion of this subject...

As I got into up in the Face book portion of this post, I began writing about how just a few years back, most of us, whether you were younger and growing up, or you were already an adult, when you went to your doctor (for the most part we saw ONE doctor for just about everything!)

I recall our "MD"S" here in Ennis could "do surgery", deliver baby's, treat you for the flu, or any illness, an take care of just about anything you needed. Unless it was some extremely odd, you were not "referred" to a specialist. There wasn't that many "specialized" doctors then. They saw you if you were an infant, or if you were elderly. It was a "one stop shop" as you could call it.
Then I began to notice right after my daughter was born, (after 1985 forward) many of our regular MD's stopped delivering babies. Several here just stopped all together. They sent you to an OB/GYN for that. I realized at that time, if I doctor did it "all" he was up, day and night, away from home, especially if you did any type of emergency stuff for your patients or a baby was coming you had to be there. So, it made sense to send women to a doctor that did that type of stuff. In fact, I guess there was a time we did not have a doctor right here in town to deliver, so you either went to Corsicana or Waxahachie for a pregnancy. That was also when you did not have a "stick" to pee on to tell you about a pregnancy or not. I "guessed" both times just due to the morning sickness etc. 

Then I began to see our older doctors, our MD's that did everything from "soup to nuts" retiring. They were all elderly, and were tired and worn out. I feel some stayed on way too long just because at the time we didn't have many doctors here. As we progressed over the next few years, I began to notice we had more specialists popping up. Our MD's the newer ones coming up, chose NOT to deliver babies, or do surgery. The left things like that up to the more specialized physician's. Again the problem with that was "lack of specialists" in small towns. You traveled usually to Corsicana, if not DALLAS, for many things that the family practitioners were not handling anymore. I think for many of us, it was a HUGE change! 

You had folks like my Daddy that remembered when the DOCTOR CAME to YOUR HOUSE! A family member went and got them. Then the doctor came to you, you didn't go to him. But that soon was to be changed as our small communities began to grow. Then you had people my age, that were used to a "family doctor" doing it all. So, even at first with myself and others my age, this "specialist" stuff seemed like more of a burden than anything. Well of course it wasn't too long until doctors began to branch out from that "family practice" into more and more specialized fields. We had a larger population even in smaller communities, we were more of a "mobile" country, everyone just about by then had a car in the family, so we could go to a specialist in the next town. They knew more about particular health problems, than our regular doctors. So, they were much more of a help, knew more about the "latest and greatest" whether medications, surgeries, tests, lab work. That specialist had been trained to be "specific" as to the needs of patients sent to him.  


In those first years of the "specialists" I feel most people were thankful for the change. Especially when it came to more of a "serious" illness such as heart issues, kidney, lung, stomach all of our vital organs, having someone that performed medicine on a daily basis of that one type just made sense. 
From there, and I'm not exactly sure why; but taking an "educated" guess we began to see more doctors going into a further very highly specialist part of the medical field were a couple of things. First of all, we had a larger population. Thus the more people, the more illnesses we began to see. People began to live longer, thus the "elderly" population living more years meant they were subject to becoming ill with other diseases, such as diabetes, arthritis and the like. The 2nd reason was due to the fact that a physician that went to college and through all of his studies in a much highly specialized field of medicine, meant they would be able to charge more, thus make more money. I'm sure that is not how we like to think about it, but of course it is true. The higher the specialty, the more money they are able to charge for having those talents and education. 

But, bringing it up to "this day and time", and doctors have just about "specialized" themselves to the place of being ridiculous! I know some of it again is more people, living longer, more research means we know about more illnesses and how to treat them. And again the "higher" up chain of speciality means the higher they can bill insurance and the patient. A great example of being to the point of almost ridiculous in specializing, is what I went through with the "double vision". 

I had it come up suddenly one night, and thought since it was late evening, watching television, and the fact I had not been sleeping well at all for weeks, I was just having problems from lack of sleep. So I let it ride about 2 weeks, and decided to have a visit with my opthamologist.  So, I went in to see them, they saw that I had "double vision" going on, put a "prism" in my glasses, and wanted me to see a "specialist" that in all honesty, I had never heard of. This was a "neuro-opthamologist." So, since I am already used to the fact with autoimmune arthritic illnesses along with my other ailments that are chronic in nature, no longer is it uncommon that I am sent to some type of a specialist. I go home, with the name of one, which turned out did not take my insurance. I began my own search online, along with my insurance information, and come to find out there were only 3 of these specialists in the state of TX & at the time 2 in the DALLAS AREA! So, I see one that looked promising online, etc. I call figuring it would be MONTHS before I would get it. this doctor could see me that week! My thought was that since he did something that high up on the "food chain" of sorts, he probably did not have a huge cliental. I go a few days later to his office in Dallas, and not only did he have a HUGE number of patients, his STAFF had to be something like 50 PEOPLE!!!! It was totally nuts!!!! To try and shorten this story, it came to pass yes he had MANY patients, because he was the ONLY specialist in Dallas that took these types of patients, other than one other one that took months to get an appointment with.

All in all, I went to the other doctor at Southwestern Medical University in Dallas, who was in my book a "REAL" doctor. That is why it takes months to get into him, and the other doctor first of all was a total "jackass", another story that I told right after that happened, but he also had this "trained" staff that did EVERYTHING!!! They did every part of the exam, put it all in the computer, and took you to put you in a dark little tiny room to see the doctor. Well, he never even touched me, examined me, nothing... all he did was look at what the results from ALL of the other people did, make a stupid remark, and say he wants to see you in a week! You can just imagine the shock and frankly horror I felt! My husband and I left there in total SHOCK that a doctor of his "magnitude" ran basically a "cattle farm". You were "herded from room to room, poked and prodded by his "staff", then sent onto listen to him saying nothing, but see you in a week! He put me on a bit highly dose of predisone, done blood work that he admitted would probably not be accurate due to the fact I am already on prednisone, and and when the blood work did come back with a very "slightly" raised level of inflammatory problems (well yes I have autoimmune illnesses) he decided to do a biopsy on my temporal artery. here is this doctor, who has not laid a hand on me basically, have had his staff run the same stinking eye tests on me for 3 visits, and now he wants to suddenly do a biopsy on the side of my head. I SHOULD HAVE LEFT THEN!!!! 

So, now this leads me to the MAIN SUBJECT I want to talk about. I realize that was a long route to get here, but I felt it necessary for me to mention just ONE of my situations with a doctor that I KNEW was not right. Yet, even with all of my research and due to it being "DOUBLE VISION" and if it were "Giant cell Temporal Arteritis" that meant without proper treatment I would eventually go blind. So, when you are faced with some that could be that potentially detrimental to your health, you tend to "disregard" your own feelings of RUN! I did actually go to my regular MD about it before having him "cut" the side of my head open a bit" and also take a slice of my temporal artery out, I needed another opinion. My MD just wanted to make sure I "followed the specialist" guidelines because in all honesty my PCP has not been in on this at first. I went directly to my eye specialist and from there was sent to another "specialist" so my PCP really did not even know about the double vision until just before the "biopsy". 
Against my own judgement, even after weighing it back and forth with my husband; we thought the doctor was a "quack" that was in such a specialized field he could do people this way, because he was about the only doctor in this entire area with this type of training. Other than that it meant going to Austin or Houston! 
I finally, still with much hesitation, went to allow him to do the biopsy. Now, that entire thing was such a horror story that morning, that I won't get back into it now. But, there is a post about the whole thing sometime about October of last year. I will look it up and post the link to it here after I finish my post... he did some thing that was SO TERRIBLY WRONG I filed a formal complaint against him to the Texas State Board of Physicians. Then they did take it so seriously that the investigated and even had a hearing about it. I could have went, but I chose to send a letter to the judge instead. It was in Austin, thus I felt I had given them enough information, along with the hospital it happened at, my presence was not necessary. 

This brings me to the "POINT" at hand. Do YOU as a PATIENT always take your doctors word as "GOSPEL?" So you feel that even though you may have a gut feeling that is different, or possibly you have researched all of the in's and out's of the "diagnosis", or symptoms, seen something that made more sense on Social Media, and so forth, you should NOT question your doctor's "authority"? If they tell you, you need a "certain" test, or even possibly surgery, do you just rely on the fact that he is the "expert" and whatever your physician (s) say is right? Do you think you have the right to question them about what they say? Can you tell them you don't agree possibly with all or part of what he or she tells you. Another thing, if you do research online and find what you feel maybe something such as a new medication, or more critical advice that certainly could pertain to you, do you print it and take it in? Do you take a list in of points you want to discuss? Do you feel YOUR time is as VALUABLE as your doctor's? Do you feel it is okay for them to say they will "charge you" if you are over 10 minutes etc late to see them, but they can make you sit for hours, while they are "chronically" late every time you go in? While we are on this subject, this also pertains to your pharmacist. So you think your pharmacist has the right to disagree with your doctor about a particular medication, treatment, etc? Plus do you think your pharmacist should have the right to sit down, discuss ALL of your medications with you, and be allowed to "change" something? Plus the "insurance" company you have "tells" your pharmacist they get paid for every patient they have a "consult" with!!!! 

Now I've opened several cans of worms. My hopes are to get YOU to thinking about your own situations as patients. For one for myself, I totally feel that it is OKAY for you NOT to feel your doctor is always right. They are "human", in fact usually overbooked and busy humans. Now I have noticed they do not even take a moment to glance at your chart. They barge in looking hurriedly at you, ask you a few questions, and if you do not stop them yourself (after you waited for HOURS to see him or her) they zoom right on out the door, the nurse hurries you out and down the hallway. The front office makes an appt. for a follow up if necessary, collects your co-pay if applicable, and out the door you go. This is before you had a chance to ask one question, after you've waited possibly hours for them, and it is always they had an "emergency". Now I agree any doctor for the most part can have some thing emergent. BUT, NOT ever time you go in for an appointment that ha been scheduled for 3 months or more! That has turned into the most ridiculous excuse, and very old. I half the time or  more do NOT believe that! What the have done, is booked 2 or 3 PATIENTS at the exact same TIME, thus he can't be in 3 rooms at once. Then if he has a patient that does stop him with a list of questions, and expects answers before he flies out the room, of course he has to answer and you are the one, that if you don't make him stay and answer questions that gets the raw end of the stick so to speak. So, you can believe when I go for a "follow up" visit that is one I should have my "time to speak" I take MY LIST and he does NOT leave that room, until I am satisfied that I've gotten the answers on the questions. If it taken 5 minutes or 30 minutes, mine probably dread seeing me come, because the they know me well enough to know if I have that yellow piece of paper in my hand, I do have a list. 

I have heard of a case of a lady here in the nation, that got more than tired of having her time taken up for hours and hours every time she went into her doctors office. So, after putting up with it for a long while. She kept up with just how late he was so she could prove it. Then she put together an "invoice" and mailed it to him with a note that it was for the "loss" of time she had due to his chronic tardiness. She had it just in detail about hours, days, etc. Now, I don't know what happened. I am sure she did not ever see a dime! BUT, she did get national media attention, which put it on his mind and other doctors that a patients time is just as important as theirs. We have lives, jobs, families and all that need our attention also, rather than sitting fir hours in a cold 6 by 6 foot room, waiting for he or she to show. 

What about thinking a doctor is "God"? And what he says has to be the "gospel" of being right as to what maybe wrong with you, what tests you need, if you need surgery and so forth?

WAKE UP FOLKS!!!! This is a NEW TYPE OF WORLD!!!! WE for the most part have the ability to find out information from all around the world, from the best specialists, the best colleges, researchers, and organizations that can give us all kinds of great information on why, what, how, when where and so on!!! With a few key strokes you can see what the FDA is doing on a new drug possibly coming out, new meds in the clinical trials that you may qualify to even be in. You can reach out to other physicians that do put their information online or are willing to try and answer some of your questions. You can virtually watch someone else have the exact same surgical procedure that maybe in your near future. From any type of medication, to any type of disease, illness, syndrome, lab work, MRI, CT, PET, and the many, many other types of tests... you can see them, read about them, and even talk about them if you chose. We are becoming a group of people that will be looking for a higher speciality in how we are being treated as a patient. So, I feel we, any and all of us have the right to question our doctors, decide if a 2nd opinion is in order, or maybe even a 3rd or 4th! If you have a "gut feeling" that tells you something is just not Kosher, then LISTEN to yourself! Often since we know our bodies better than anyone else, if we pay close attention it will "tell" you what is happening. Now, that does not mean we are always right either. But, taking a very good look, and listen to the grander situation, and also not only that gut feeling, but objectively. In other words, try and think about what is happening and what doctors maybe telling you about someone else and you are there as a care taker, so you can have a vision all the way around when it comes to decisions about your health. OUR HEALTH is the MOST IMPORTANT piece of our lives. If we are not in good health in some way whether it be acute and temporary, or chronic and long term, we cannot be who we want to be, and do the things in life that we want to do. 

So, listening to your own mind and heart about illness, medications, doctors, procedures, surgeries and so on, is vital for you to make a choice that you later can live with. I know the couple of times I allowed myself to be kind of "hornswoggled" into a medical situation before I had time to weigh it, I  wound up to regret it. 

Doctors are just humans, that yes have a great deal more education than many of us, in the medical field. For the most part, your doctors are probably giving you good advice and treatment. If they tell you something, then more than likely you can bank on it is necessary. But, anytime you have that feeling, no matter how large or small what it is you are questioning, do so.

You can FIRE YOUR DOCTOR! If you have a physician that is just not a "good fit" in any way, find another one to go to. I decided a long time ago, unless it was just a point that I could not for some reason see another doctor, I have several things, but two HUGE ones when it comes to staying with a particular physician. They MUST have a good "bedside manner"! Unless I may not see that doctor again for some reason it may not be that important. But if it is somebody I am going to have to see on a regular basis, they MUST have a good, preferably great bedside manner. The other is that they MUST not mind me looking things up online, or printing something to bring in and so forth. Now, I don't mean I am going to question everything, every time that happens. If I don't trust my MD that much,, then I would change doctors. What I mean is I don't want some grouch to tell me, oh you don't know what your'e talking about. Or just because you look something up online, you can really trust it... and so on... They need to be open minded to the fact we do have that capability and many online resources are very reputable. 

The fact of the matter for me is, I have been through so many physicians, of all different types of specialities, some maybe 3 or 4 of the same specialty...due to the chronic types of illnesses I have, I feel I have more than the right to research my own illnesses, my medications, treatments, and if something sounds "better", or not so good... or whatever I may find, I feel my doctors should absolutely listen to mat at the very least. If they agree, then that may mean I get a better treatment, and possibly it may help someone else along the way, or if it is something not for my situation, then I expect my doctor to take a moment to explain why they feel that way. 

As I had said in my original Facebook post at the top in regard to what I told my Mom. YOU don't have to DO or NOT DO any and everything a doctor tells you. They are not SUPER human, and even though they do know more than us in many ways, they can still "miss the mark" or just be wrong. You have to think for yourself... and go by what feels "right" for you.

I just went through it. I went to 2 of the PA's in my PCP office. I went and had a sonogram (of which I told the tech it does NOT show up when I lie down). Thus nothing showed on the sonogram. But I also knew that LUMP was not THERE BEFORE and SOMETHING WAS WRONG... and after I did enough research I knew more than likely it was a hernia, and not cancer or something like that. I also found out that hernia's usually do "disappear" and especially on women are hard to detect. So, I go to my Gynecologist, and again she has no clue. I go BACK, see our other PA, and she right away says it is a hernia, and the other knot the just began a couple of days just before on the right side is also a hernia. Plus I find out they are genetic in women! Thus my daughter is subject to the possibility she could also have one or two. Even the surgeon told me they are extremely had to detect in women... but it is there and at least the left one does have to be repaired) SO, again just a reminder even when you have been through that MANY "doctors" you can still come up and find they "missed it"... and you may "find it"....


I would LOVE TO HEAR your stories about this, and your thoughts......