Showing posts with label medications. Show all posts
Showing posts with label medications. Show all posts

Tuesday, December 10, 2013

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...... 











Saturday, November 30, 2013

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


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





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

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


Thursday, August 19, 2010

Incredible News about the Lupus Medication Benlysta! FDA makes priority review

Human Genome Sciences, Inc. (Nasdaq: HGSI) and GlaxoSmithKline PLC (GSK) today announced that the U.S. Food and Drug Administration (FDA) has granted a priority review designation to BENLYSTA® (belimumab) as a potential treatment for systemic lupus erythematosus (SLE). A priority review designation is granted to drugs that, if approved, offer major advances in treatment or provide a treatment where no adequate therapy exists. The FDA has assigned belimumab a Prescription Drug User Fee Act (PDUFA) target date of December 9, 2010.


http://www.hgsi.com/latest/human-genome-sciences-and-glaxosmithkline-announce-fda-priority-review-designation-for-benlysta-belimumab-as-a-potential-treatment-for-systemic-lupus-erythema.html


I will be first in line as soon as the FDA gives the thumbs up! I have been awaiting this now for well over 2 years, watching all of the clinical trials, and the positive results. I am so elated.... Rhia

Thursday, June 17, 2010

Another Brand New Medication on the Horizon for Approval against Lupus

UCB and Immunomedics Inc. announced today that a new lupus drug candidate, epratuzumab, provided a significant reduction in disease activity in patients with moderate to severe active systemic lupus erythematosus (SLE).

See the URL:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=3273&zoneid=99


This has been a wondrous week when it comes to living in the world of those with Lupus, and other autoimmune diseases. The many years of research has paid off, and now we have at least 3 innovative, one of their kinds new medication to take away many of the horrible symptoms of Lupus, along with possibly slowing down or stopping the damage to organs, such as kidneys, heart, liver and the brain. I am so incredibly psyched about the possibility of being "more well" and less worried about how much damage the Lupus is causing to my vital organs. I have already had more than my fair share of complications due to the Lupus, when it comes to other issues I have health wise. No matter how "not serious" or how serious other entities in your life as far as illness may be, Lupus can definitely reek havoc with your body, and cause even a minor health problem to turn into a major detrimental situation very quickly. Did I ever learn that just a couple of months ago when I thought I was having a severe gall bladder attack that was requiring laproscopic surgery to remove it. Little did I know the Lupus, along with a nick in my liver during the gall bladder removal would put me on a very thin line of almost losing my life to complications.


I pray that no one ever have to go through what not just myself, but my husband and family went through for 8 weeks plus. Even after I was "out of the woods" so to speak and at home, all of us were extremely concerned I could suffer harmful set backs that would send me back to the hospital at any time. I am still have pain issues in my right side, with tenderness, and symptoms that could be related to continued issues with my liver and pancreas. I certainly hope not, but we are keeping a close eye on any developing problems.


Please continue to follow the great news though about these new medications. I will continue to keep you posted on information I receive about the continued breaking good news..   Rhia