Thursday, March 7, 2013

For the Sake of Illness, & Are Medical Professionals "perfect"? (or do we save ourselves)

I had been sitting here very early this morning, trying to figure out how I might get some of my latest health issues resolved. Or if not resolved completely at least some "answers" besides the ones I come up with online. I would like for someone to "concur" with me, what I am researching, finding out, feeling, my symptoms, etc are really what is going on. Maybe I could come to accept some of this, and not be so totally stressed out to the point of chest pains lately. I realize we all want to put our doctors up on "pedestals", view them as beyond human, and feel like they have every answer to every pain and problem, and they are always certain, and correct in their diagnosis. But, that would be in a perfect world, where everyone was right all the time, and no one was wrong. Doctors are HUMAN! They DO make mistakes, and yes they are very well educated, and take an oath to do their best to keep us well, or make us well, when we are ill. They work (or many of them) over and above the call of duty, with long hours, and sometimes little compassion when it comes to even us as patients. As long as they are "helping" us, and giving us the right answers, we praise them. But, let them not be able to give us an answer right away, or miss something in our charts, or any thing that may happen that is not perfection, and we are angry, we are let down, we are in dismay of how THEY a PHYSICIAN could miss something so critical! I have been through enough doctors over the past 8 years, and then gosh I cannot count on my fingers and toes the number over all of my life. I have had some that were just almost due for "Saint hood". I have seen some that I would not take a stray puppy to. Then I have had many in between. Much of what they do and do not do now, has nothing to do with them as doctors. Most of them would love nothing but to have just enough patients they can take great care of, make a living, not be hassled by insurance, liability insurances, and all of the bureacratic bull red tape that they go through. Most of them would prefer to spend a hour every time with a patient, going over all of their issues, symptoms, and making sure they do Listen and HEAR all. They wished they did not have to be called to do something else in the middle of our visit, or be late in seeing us by hours. But, all of that completely flies out the window, when it comes to the truth about physicians. They are overbooks, rushed, do not have time to look at charts, get to really KNOW their patients, and have time to look at what is really wrong before they walk in the room to see you. Hell, the other day, I had a "new" doctor walk in after being over an hour late, tell me he would "start" on my initial information, but he had a patient running late, and he would "work" us in together, going from room to room. He at least apologized for the situation, but even though he came in and spent a fair amount of time with me, he still honestly could not know enough about my illness, symptoms, and everything else wrong with me to try to even think about a diagnosis. He was able to make a few "guesses" and honestly he just about admitted that. He DID say if I would sign releases, let him get all of my records, and give him a couple of weeks to really go over all of those, then he may be able to come up with something that would make sense, and possibly find out what is wrong. So I admired the guy for admitting "hey" hell if I know after a few minutes, and trying to go by what I could tell him. Yet, even at that, he several times messed up and rather saying my "Lupus" etc... he said your MS, etc... so even though he was trying his best to "be in the room" with ME, he had his mind on other patients I know. I do not know if there is one doctor anymore that is truly able to "be" with a patient, physically, mentally, emotionally, and in all ways in a room during a visit now. They have their minds on 50 other patients, their nurses, staff, tests they have performed, patients in the hospitals, and lots of other things, like how far behind are they and how many are stacking up in the waiting room! It sucks, but the days of the doctors that make house calls, that really CARE and personally KNOW their patients, that do spend the necessary time on those that have lots of complications, do research on symptoms etc... that time is almost gone, and that type of doctor is so far and few between, and they are getting to be "dinosaurs", in other words, non-existent. Yet, many of the doctors get pissed if "you" say something you may have read online, in a news article, in a health magazine... they get all pissed off because you are "trying to do their job". Well, NO, you are trying to get well! I certainly DO NOT want their job! But, I would like to HELP THEM< HELP ME!!! If I can "shake up an idea" by saying something helpful, or helping to more describe a symptom, or tell about something that I did not think was relevant, yet I read something and maybe it is necessary information I am helping both of us. When a patient such as myself walks in, especially to a new doctor, and I list ALL of my illnesses, and surgeries, Lupus,RA, Sjogren's, DJD, DDD, 2 MI's, two TKR, a total shoulder replacement, hysterectomy, gallbladder out, a 4 level cervical neck surgery, a left wrist, elbow, and shoulder surgery, a pain pump internally, osteoporosis, migraines, high blood pressure, and the list goes on, along with a list just as long of medications, and my list of doctors are to where I cannot remember all of them... how can they not be overwhelmed? They walk into a room with a patient whose history is beyond what they ever thought it would be.. and here this patient is with these new symptoms, that are also very complicated, and could be something extremely serious, or may not be, but look at everything you must take into consideration! Just ONE of my current symptoms, DOUBLE VISION, in itself could be many things, and any one of those could be very serious. Now I have been to, let me think, 4 doctors, I have had every eye test, every blood test, even had a biopsy, and so far nothing shows to be "abnormal". Does that mean nothing is wrong? Does that mean that I don't have a tumor, or Myasthenia Gravis, or MS, or a TIA? Plus there could be several things going on with nerves and muscles of my eye. But, as of now, not any "test" has said so. I have issues with doctors going too much be "tests" They are great tools, but they are not always ACCURATE! They are meant to be TOOLS! They are not meant to be the one thing that absolutely diagnosis what is wrong. But, with doctors now days, if an MRI, CT, blood test, or any other scan, etc says NO, then they do NOT have time to try and just take that as a tool, and then put together everything else, and think, hey this patient does have "this, that or the other", even though some test may be negative, etc. But, if you "read", you know often times many of these tests are NOT accurate... often they are, but there are so many things that can throw them off, and so a diagnosis that might be accurate is put off, or missed, due to too much emphasis being placed on some blood work, or a scan. I know for a fact, that MRI's and CT's can be not accurate. I have had them on every joint before surgeries. I can tell you that on my shoulder, which is now replaced, and my knees, which are now replaced, that all of those scans, did NOT show the massive damage that was in them. The damage I had was "deeper" and hidden from what those scans could offer up. So, I spent 2 Years, In severe pain, just due to some scan saying it was not "looking" all that bad. It took me, griping, going back time after time, going through several doctors, and finally getting it through to one of them, after all the scans, and a nerve conduction study, and an EMG, finally he did the surgery, and we saw both my neck and my shoulder were both totally a mess, and the surgeries on both were totally necessary. But those scans in themselves, caused me to be in lots of pain, for a long time, before I could finally get it through to them, things were much worse than what any scan was showing. Often times they make you feel like you are "nuts", or stupid, or making it up, or a hypochondriac, or something, other than yes, you are right, and yes something is very wrong! Down below is more of the same discussion. I had put what is below on a FB group page, talking to one of the ladies there... thus more of what is just what we go through no matter who we are, unless we are some celebrity, with lots of money, and can have our own personal physician, we are going to be stuck with what we have here in society. My fear is, that it is only going to get worse. Our population grows, people live longer, diseases are getting worse, money and insurance is not as it was, and we do not have enough medical professionals to take care of us....

Oddly enough, before I read your post, I was just thinking the same thing almost. I would like to find ONE doctor, that would absolutely sit down, with ALL of my records, my tests, labs, surgeries, illnesses, & everything I have along, with a list of all medications, and everything I have been going through that is "new" over the past 12 weeks, plus the double vision, which began about 10 months ago, and have them TRULY LISTEN AND HEAR everything I have to say! But, try to get that done! Even your best doctor, on his or her best day really does NOT want to do that. They have hundreds of patients to see, they have a "set" time they schedule for patients (usually if you get a whole 15 minutes you are lucky), and they do not want to get "bogged" down too much with a complicated patient, who takes up more time and effort and research. That type of patient "such as myself" and many of us due to all of our health issues, are a "waste" of money for them. The insurance will only pay so much no matter how long the visit is, probably why they max most out at 15 minutes, and if we had to pay cash for an hour visit, it would cost us hundreds and hundreds of dollars, and yet they still probably would really not like to get that engrossed. I am not wanting to put the "great" doctors down out there, because they do exist, BUT all of them now get caught up in the "system"... of insurance crap, of time, of too many patients (especially if they are a very good doctor), of people that could be so complicated, things like "law suits" could be possible, because of all the of liability involved. I know that sounds harsh, and even though I have two doctors that are incredible, and I have a couple more that are very good, I can guarantee trying to get a whole hour of even my best doctors time would almost be impossible. I am fortunate enough to have a PCP who is young, he has a great deal of energy, he truly wants to HELP his patients, he WILL (when you have a "scheduled" appointment) LISTEN and I know he must sit down "after hours" and research cases like mine for instance. He knows so much about my case, about each problem of mine, he treats me for almost everything, even though lately he has began to pick up lots of new patients, thus he gets to where now he is sending even me out to "specialists" which is where I am getting screwed around! Honestly, the "specialists" for the most part are the ones that surely do NOT want to be hung up on some complicated patient, who has a million questions, and Lord forbid if you are one of those "internet" patients who actually researches your own illnesses etc!!! Many of them hate that kind of patient! They want to be able to "tell you" what to do, for you to just take their words and "do it", and not ask questions! That cause disruption and delay if you are educated about your conditions. I ran into that more than once, and when it all came down to the "diagnosis" once everything, including surgery on me was finished, he admitted what I said in the beginning was exactly what was wrong. I was shocked he even was able to tell me that. But, he argued with me, basically told me I was stupid, I was NOT a doctor, or a radiologist, and I needed to shut up and listen! After I finally expressed my discontent with his nurse, and him... He finally got the message. After that, He was never disrespectful again. I NEVER said I was a doctor or a specialist, or anything.. all I did was try and help with my own observations, and what I was feeling, my symptoms, and things I had read and studied about... so he had to admit I was "NOT" one of these internet patients, who saw something online and thought okay I have that. Sometimes even my own PCP who LOVES educated patients, is happy when I do come in, I do have an idea of what is going on, and if it makes sense to him, honestly it makes his job easier, since I can relay what I am feeling and seeing as a patient WITH the problem!

Wednesday, March 6, 2013

The Ever ON-Going Saga of Extremely Painful Legs & Double Vision



I also went through another EMG there, which was ordered by my pain doctor. I know from just what I was told Monday, there is some neuropathy, and a nerve or nerves pinched some place or places, but he did not elaborate. So, I will have to wait for the results from my pain doctor, before I really know just how bad, where and what that means. I gather my right foot, heel, etc. may be showing the neuropathy in some way, from what he said. It is like this "doctor" I saw on Monday, wanting yet ANOTHER CT, exactly like one done not even 6 months ago, but he wanted it done by "someone in Dallas". Well I realize some machines are "better" or newer than others, but if nothing is there then , then the odds are NOTHING IS THERE NOW! Besides just about every CT and/or MRI I had in the past was "wrong", or inconclusive. It took surgery to find out the truth on every one where joints were involved. From starting years ago, with a left knee issue, the MRI did not show a whole lot wrong, yet when surgery was done, it was a "total mess" per the doctor. Same thing with both knees, and my shoulder, they did not show up that badly on the CT's or MRI's, BUT AGAIN they were totally degenerated and in need of replacements. And they were all replaced! In fact with my right shoulder, my doctor finally admitted to me that he was not able to "see" all of the damage and deterioration on the scans. So, it goes to prove they may be inaccurate either way, for the good or bad. It is very difficult for me to trust any scans now since so many did not come up to show the real issues. So, I refuse to repeat tests that I feel are not necessary anymore. Yesterday I went yet to ANOTHER NEUROLOGIST, getting RIDICULOUS! I can't even keep up with them anymore and which is doing what to me!!! Anyway, I went to "appease" my PCP, who did not want me to wait this entire 5 months with the double vision situation. So, I agreed to see this regular neurologist while waiting to see the "special" optho-neurologist in April. I knew again this was a wait of my money and time basically, but I did at least find out a couple of things. First of all this one for a change is NOT test happy. In fact he admitted he does NOT like to redo tests when they have been done. He prefers to get the results, (which my other doctor did NOT send them before my visit as they were told), and he also talked to me about the possibility of the Lupus having something to do with the double vision, plus he seems to think it is possible that I may have Myasthenia gravis, which at first scared the hell out of me. What I did not realize is, that it is another autoimmune disorder. He also told me, which much of course I know from such extensive Lupus research myself, that vasculitis maybe a part of it, but he tended to lean towards the MG. I do not have the "Ptosis", the droopy eye lids, but some do not. Actually he was the first one that made sense. I have have worse symptoms the more tired I am, or if I do not get much sleep. I am always worse in the evenings. And I am not sure if that doctor in Dallas did the particular blood test for this, but even at that it maybe be "serum negative" and I still have it. Anyway, I decided I refuse to go to all of the specialists (or the new ones this doctor suggested on Monday). I am not having another CT right now. I do have updated blood work by my PCP tomorrow and I am going to mention the MG so he can decide if he wants to do the blood test for that while they are drawing blood. IF it is Lupus or MG, or they never find out why I have double vision, I may just have to live with it, as I am doing now. I live with some pain, I live with many other symptoms that are unpleasant, thus this maybe one I must add to the list. If they find nothing, then they just find nothing, and I am just about at that place to say forget it, I will live with it. And then yesterday I call my pain doctor back, and leave a message for the Head woman there that knows me very well, and knows about my entire situation, she had dealt with me and the pain pump in depth. I asked her to please talk to my doctor about his reasons for wanting to do surgery right now on the pump catheter since the pain in somewhat better, or less for sure than it was. She called me back, left a message and told me, he said it was NOT necessary if I was somewhat in less pain now, and we COULD wait, and NOT do surgery yet. She said of course the other two girls never told him I said I was somewhat better and I wanted to hold off to see what the EMG looks like, and see how I do over the next days to come. If I get worse, and I am in extreme pain again, then we will face opening me up and looking at the pump. BUT, it goes to PROVE had I NOT BEEN educated enough about all of this, I may have went along with an not needed surgery for now! So, we must educate our selves and again I so agree, thank God for the internet!

Tuesday, March 5, 2013

Wondering Just How "Special" these "Specialists" are? Tired of being put through the same test 20 times...

I am to the point, that I have decided some of these doctors just do tests over and over again, and they really don't "listen" or look at what we already have had done. I went to have that EMG and NCS(Nerve Conduction Study) yesterday. I was under the impression that is ALL this neurologist was supposed to do. I had shown some issues with lack of reflexes on the right side with all of the horrid leg pain stuff, and I also felt like my right leg may have been hurting worse, plus it felt somewhat weaker than the left side. Anyway, first of all this doctor was EXTREMELY LATE! My appointment was at 3:00pm, in Dallas, and he did not even come into the room until 5:00!!!! We waited on him in the tiny exam room that was cold and uncomfortable for two hours. It was nuts. Then he comes in, asks me a little about what is going on, and I explained a little about the pain, and then my pain specialist wanting to check with an EMG to see if I have some nerve issues that could be contributing to the pain. Well, he begins to do a total exam on me, and that takes 20 minutes or more. Then he says he will be back in a few minutes, and he finally comes back with the EMG/NCS equipment, and begins those tests. That takes at least another 25 minutes or so. Meanwhile I think the entire building had just about gone home! Anyway, he then does explain I do have some "neuropathy" and possibly a pinched nerve, but does not elaborate on where or how badly etc. But, does say he will get a report to Dr. Campos. Then he begins to tell me he wants me to have ANOTHER CT BRAIN SCAN! (I JUST HAD ONE LESS THAN 6 MONTHS AGO), that he did finally get the report on just before we left, and he wants me to see these "specialists" in PAD! Then we wants more blood work, that all of it but one thing which is a test for gout, my PCP just done two weeks ago, and he in fact is repeating it this Thursday due to the myoglobin stuff. When I said I already have a rain CT that is with and without contrast, was done less than 6 months ago, and shows there is no sign of stroke etc, (which is what he was looking for, and I feel has nothing to do with my leg issues), he said no he wanted a "different" one and wanted it done at some place in Dallas! WEll, that is a crock of bull! Why do these doctors have to always think they have to have all of their own testing, when these tests have been just performed??? Why should I go through another round of a CT, I just had one last week on my lower spine!, and then each on of them costs me $200.00 each!!!! It is insanity. Plus I have a cardiologist I see next week. IF there are issues with any sign of "PAD" Periphial Artery Disease" she can test that for herself. Why should I go to yet another set of doctors I don't know I thing about, that are again in Dallas, when gas it already so high, I do well to see the couple of doctors I need to in Dallas? He wants to put me through all of the same stuff I have just been through, and he has no clue, that I am facing all of this stuff with my Mom and her heart, I have a life, I have other issues and I cannot be running to Dallas every 5 minutes to repeat tests I have had just done... I was so angry when I left.... yes he is a good doctor from what could gather, and I did get the EMG and it got sent to my pain doctor, which is the reason for the visit anyway, but I refuse to go through any of this other mess. I told my husband, other than ask my cardiologist next weeks about the PAD stuff, I am NOT going to go through any of this, and I do not feel I have the need to see this doctor again. Then while we were headed that way, I get a cal from my pain doctor's office saying that he wants to reschedule the surgery to look at the pain pump catheter, again, on Friday! I just had left a message with his nurse a week ago, that the pain was somewhat better, and that I did not want to be "cut" on unless he knows something else that I have not been told, I prefer to wait, and let's see what all of these other tests show. As far as I know the CT scan did not show anything that they could see wrong with the catheter. Of course they can't get a really good look other than see it is where it is supposed to be and not pulled loose or kinked. But, why when I was headed to have this EMG done anyway, would they once again want to try and do surgery on me on Friday? Anyway, I just called the "head" woman over all of this and left her a message. I asked her about why the "urgency" of this surgery to "look" at the catheter? Why if he does feel it necessary to do it now, rather than see if the tests along with me just getting somewhat better could be that there is nothing wrong with the pump at all, or maybe whatever was happening did "fix" itself with the pulling out of the old fluid and putting in new fluid. Anyway, I am fed up with all of them. They will not work together, they want to send you to 50 new "specialists" that you do not know, and they are 50 miles away, plus they want to repeat tests you have just been through and that is just not necessary. It hurts our insurance premiums by raising them up with unnecessary costs, it hurts us by putting us through tests like that over and over again, it costs us out of pocket a ridiculous amount, and it takes out of our precious time in a day, when he is not something that had to be done. I am to the place that I am going to just start analyzing this stuff and if I feel I really do not need it done, that I am going to just refuse to have this crap done.
 
Don't get me wrong, I do TRUST my "regular" physicians that have been taking care of me for years. My PCP I trust and would have done anything he said. I feel that way about my Rheumatologist, and usually my Pain Specialist, other than this business about having this surgery on the catheter done so quickly, rather than wait. Surgery is surgery... and I feel it needs to be done just if it is truly that necessary. But, when you are hauled off to some "specialist" that you no nothing about, (like my nightmare with the "neuro-opthamologist" that turned out to be nuts and possibly a quack), I just do not feel I HAVE TO go along with each and every expensive test they decide to do, and especially when I JUST HAD THE SAME TESTS DONE, and they just decide they want their own. That is one of many huge issues with the medical world. They will NOT many times work together, but rather want to do their own thing, and then the patient gets caught between 10 doctors, 20 tests, that often times are repeated, and we do not know who is who, and whom to believe. I have just had more than enough.
 I face this business with my Mom, depending on the outcome next week with her 2nd Echocardiogram (which this one should be repeated, it is for a very good reason), and my prayers are that this one looks much better than the first one. So, these doctors just don't know (because they do not care about our lives as a whole) what the rest of our lives are like. They decide they want something and to hell with what else is happening with us. It is insanity, and it is enough to drive many of us insane...

Saturday, March 2, 2013

"Sequestration"? Has Anyone Really Found Our Exactly what this Term Means to Ua at the People?

We have so many "terms" we hear over the media, that we are to the place I do not think we even really "think" about their meaning. We have had "names" for this, that and the other, "made up" by media, by politicians, we heard our dear Texas Governor talk about "Sequestering" TX from the Union, and so forth, has anyone really given over the time to look up what this word as far as the "political" meaning is "Sequestration"? Well, it goes a long ways over from anything to do with "pulling away from the union". And the the ramifications for us, the People of this nation are going to be severe. Yet, that bunch "WE ELECTED" TO DO a job decided to walk off, leave a day early, for some totally unknown reason on Thursday, while "Bone Head" runs his mouth, and leave the halls of Congress empty, allowing this "Sequestration" business to move right along. How can anyone that is sworn in to live up to "taking care" of our government, and the people that support him or her, walk out in such a dire strait time, and more or less say to "hell" with it? The "playing of politics" has went way too far, and we need to be telling them we have had a belly full of their games. I hope that with elections of these officials coming up soon (although not soon enough in my opinion) all of us are truly giving thought to the way this bunch of "so-called Senators and Congress Men and Woman have acted, or I might as well say Not-acted_ during their terms. They have sat on their laurels, they have mouthed off at one another like a bunch of 1st graders, they have argued, pitched stupid lies back and forth, allowed the media to just have a hay day with their schemes, and bull, leaving us hanging in the gallows of the worst recession, to almost the extent of a depression, and it is not over yet folks. Take a very good look around at your home town. Mine is just in self destruct. As I drove around a couple of days ago, just about every store in our "down town" area is closed and up for sale. Or there is a "check cashing" or "title loan" place on every corner. Even our Old Sonic is now a car title loan spot! I count MORE check cashing and car title loan places, along with pawn shops than I do actual real places of business just within 20 square blocks of my town!!! Yet, they can walk the hell off their "jobs" and (might as well since they don't do a damned thing) and get PAID TO DO NOTHING!!! Tell me, if you acted that way at your place of business, would you continue to have a job and get a check??? I think NOT! Yet, they do!!! There is not a damned thing right about anything that goes on anymore within what is called a fair type of government. We take away from the poor and the middle class, and make them ever more poor to the place they cannot pay their bills, take care of their kids and eat, yet we call that "democracy"? We allow that bunch to threaten our entitlement programs, the only thing most of us have for retirement these days, and where are they going to get that money when us or our kids get ready to retire? Tell me how "the greatest nation in the world" has the worst ratings of kids graduating? Then we send them to college, they have to take Loans out to pay for it, and if they are lucky enough to land a job after college, they spend 10 or 15 YEARS PAYING OFF LOANS they had to get to go to college????? There is NOTHING right about that!!! I sure as heck don't see any of them cutting "the fat" off their checks!!! It is insanity to hear just how uncaring that bunch up there are. Unless you have a big corporation, with lots of money and power, where you can line their pockets in one way or the other, you are nothing in their eyes. As much as I love America, I in ways despise the way it treats our citizens. We must fight, scratch, scrimp and beg for every dime. I have been through situations as of late, due to illness and also helping out a Mom who is getting up in age, and the "hoops" you must jump through to get a "job" done, and done well are ridiculous. It appears that people have gotten so displeased with their life, their employment that they literally do not care if they do a job right or not. It would take me both hands and all of my fingers to name all of the things I have had to do to get people to do what they are supposed to do. I have to wonder why that is. Not long ago, people were PROUD of doing a job well done. American People took pride in whatever they did, whether it was in a bank, digging a ditch, farming, working in insurance or whatever, you could depend on them to do it, and do it well. Not any more. I have been treated like a fool, basically called a liar, had to have numerous conversations, that have taken months and months to get an insurance claim paid correctly, to get a freezer warrantied correctly, to get a doctor to do his job right, and the list is endless of things I have done, because others will NOT do their jobs!!! I have to ask myself why is it. when jobs are the most scarce now, it is so difficult to find someone to do it correctly? Because of the non-caring attitude of our government, and the way we are treated, the attitude has trickled down to each of us, and people are sick and tired of it. They have fought the battle for too long, and when you finally have battled to the point of fatigue, you just throw up your hands and say, I have had enough!!! And that is what we are a nation and society have had IS ENOUGH!!!

Friday, March 1, 2013

Can't Allow Budget Cuts to Interfere with Lupus Research

Here is an article and the place you can go to send a letter to your Senators and your Congress People to let them know you do NOT want funds cut for further Lupus Research. WE already are in much more need of funds to move forward, tus we surely do not need cuts.

http://lupusresearchinstitute.org/lupus-news/discoveries/13/02/27/help-lri-petition-against-federal-budget-cuts-research-diseases-lupu