The Bad Days and The Good Ones...

Ah, even though this blog is dedicated to the realms pain, fatigue, illness, and the long road of getting through the maze of medications, doctors, test, and just "living" one day at a time with Lupus, and the entire gamut of all of my chronic issues with health, I find myself having a difficult time talking about the "bad" days. I want to encourage others that they CAN have a somewhat normal life. I want to tell you that you can overcome some of the pain, with your own mind, and with much help from doctors and medications, all of that combined with exercise, taking care of yourself, trying to stay as much out of stress as possible, and having the support of family and friends, life can feel normal on many days. But, there are days, (like yesterday) for me, that I just cannot make myself get up and go. I am too fatigued to move, I am in too much pain to try to clean, do laundry, to even think about writing a grocer list, or the idea of even getting dressed is way off the beaten path. Little things, when I am so exhausted, seem like monumental tasks to me.
I have myself somewhat on a "daily schedule". I have a certain time I get up for the most part, certain things I do at certain times of the morning, from taking my medications to exercising, I try and keep on a schedule. That keeps me moving forward, rather than stepping backward and wanting to wallow around in the "pain" and suffering of it all. I hate to think I gripe too much about all of it. Lately though, I have just felt the need to really let out all of the anger and frustrations that follow you like a shadow constantly when you are plagued with a chronic illness. things other people do, and take for granted as being a part of their day, could be something for one of us, that is a task way to huge to even think about on a particular day. That is part of the reason why the deadline of my 2nd book is looming, and I fear may not make it. It is not just about my own health issues, but now I face things with my Mother, that we are not sure about. IF some of these tests come back not so great, that may mean months and months of totally tending to her. IF she has to go through a major surgery, she will be very weak and not able to do lots of things for months. So, I also have to take that into consideration. I am also facing my own dilemma, with the double vision crap. I now have seen three doctors, and am set up to see a 4th one in early April. Yet even being specialists, not one has really been able to point their finger to what might be causing me all of this new grief. The symptoms are many yet vague. When a patient comes in complaining of "severe" leg pain, down the flanks, and down the thighs, yet it is also down the backs of the legs, to the point the bottoms of her feet hurt, that in itself could be several issues. It could mean kidney stones, sciatica, my RA acting up, issues with my spine, etc. But, the key issue is that I have a pain pump. These NEW symptoms are breaking through the pain medication that keeps me out of pain, thus it is severely acute pain, as if I do not even have a pain pump, or pain medication. So, that puts the entire situation in a new light. It could be pump problems, medication issues, catheter issues, all kinds of other added problems to complicate the entire gamut. I had already been to my PCP about it, in fact twice. I had a kidney infection, that they treated me for, thus I figured there was a good chance I had stones. But, rather than go through an expensive scan, which would not do a thing but tell us if it was stones, I took the antibiotics, drank my cranberry juice, and hoped that it would clear up. Yet, the pain kept on. I chalked it up to the "flu-like" problems I had for days and days before. I felt all kinds of the typical flu symptoms, achy joints, back, tired, fatigued, kind of not really having an appetite, just general aches and pains of the flu for about 10 to 15 days. That also told me that I probably had a "flare" of the Lupus on top of it all, would only would exacerbate all of the symptoms, make the fatigue and pain in my joints and muscles worse, thus I tried to write off the more pain that came onto a severe Lupus Flare. After over 2 weeks, almost 3 of no relief, I finally had an appointment with my PCP. I told him how long it had been going on, told him the entire story about how the symptoms first came on, that I had came in and seen one of his PA's, had a round of prednisone, after an injection of Solu-Medrol, and antibiotics, yet the pain was not any better, and by then I had a Lupus Migraine. He took blood work, and gave me another Solu-Medrol injection, hoping it was a bad flare and that this would knock it all out. Well, after the weekend, I was no better. In fact, we had decided since I had made mention on several occasions, that it felt as if my pump was not "there", that something really could be wrong with the pump, catheter, medication etc... thus I called my pain specialist and left a fairly panicked message of what was going on. Well, this was on a Thursday, he was doing surgeries and out of the office on Friday, thus Monday I could see him. I could not wait to get into his office, and I was ready to sit in the floor and scream I hurt so badly. He could see that I was in excruciating pain. thus he wanted to change the meds in the pump ASAP to see if something was wrong there, and from there do a couple of tests to see if something new was wrong, which was an EMG because I have basically little to no reflex in my right leg and foot. Plus a CT scan of my lumbar spine to see if something may have happened. So, here we go. In the meantime he gave me a very strong oral pain medication because what was going in surely was not helping what so ever thus I had to be gotten out of pain. HE changed the meds out on that following Friday, yet I felt no relief over the weekend, which I should have if the medication had been the problem as far as we knew. I went through the CT scan, the EMG/NCS that did reveal I have some neuropathy, neuritis, and some degeneration in some of the mylen around some of my nerves, I gather in my legs, from what I can interpret from the tests. The CT did not really show anything other than I have scoliosis which we already knew for a long time. I can remember being very little and the doctor would watch me walk back and forth due to the "crook" in my spine. I guess it was never bad enough to brace, because they never did. I do have to wonder now if it is a little worse. I noticed they mentioned it and the degree of the way it is curved on the CT this time. I do not think any of my other CT's have said that. But, the CT of my lower spine that has been done is proper several years old. I have not had one done for any reason since probably around 2008. I had a couple done even earlier right after we got to TX. I had a really bad bout of very severe lower back pain that sent me to the ER in Corsicana something like 4 weeks in a row. I could not get easy, and they felt I was dealing with kidney stones on each side. They kept trying to keep me comfortable and flush them out with lots of IV fluids. Finally about the 4th trip there the pain started to subside. This was before I even had insurance, so it had to be in 2006 or very early 2007. My insurance came in finally mid 2007, thus I must have had that issue with the stones in 2006 I think. Talk about a nightmare. I feared going here to our ER. At the time, it did not have the best reputation, we did not have near the amount of "good" doctors and specialists like we do now. It was just not at that time a place you went if something was very wrong. Plus they also had a reputation for shipping you off to Dallas rather than help you very much. I knew the other hospital about 20 miles away would try and help me at first. Thus they did. They even I believe done "charity" on the visits, because of me not having my SS at that time, and my insurance had not kicked in, there was no way we had the money to pay for all of those visits and tests. But, they helped me out. So, that was nice, because at that time I was really ill with those stones, and probably unless one was too big to pass or began causing other problems, that would not "blast" them because of the expense back then. When I think back to some of the problems, and especially painful issues I dealt with, all of them extremely painful yet most of the time, I was not able to see a doctor that would treat the pain also, I am surprised I have even made it this far.
I know for me now, and I just read a post in FB from one of the groups I frequent) about do you ever want to throw your hands up and quit? Also, What is "normal?" Those are two stupendous subjects to write about and dwell on for awhile. I shall close this post out and dedicate my next one to those two subjects.

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!

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!

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...

"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!!!

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

Totally Insane on Monday - The wheels in my brain go round....

It seems as if nothing feel "right" or seems right with me anymore. I have been dealing with this ridiculous and serve odd pain in my legs, lower back, feet, etc for weeks and weeks. Nothing, and I mean nothing has seemed to completely relieve it. We have put doctors heads together, our heads together. researched everything we can find, even completely emptied the pain pump a week ago last Friday, refilled it, and I had absolutely no change for days. I have been on strong oral pain meds to go along with the pump, that "appears" in itself to be working. That does NOT mean that there is not an issue with the catheter portion being pulled out of my spine, or kinked in some way, causing issues, but as far as the "mechanical" workings of the pump, it seems to be okay. I have now been to my pain specialists, my PCP twice, my Rheumatologist, along with also emailing him (by the way I got an absolutely awesome email back from him on Saturday am that make my weekend, after having such a heck of a time with the PA that is there in his office). I have been taking BC powder every time I can and probably more than I should. using the pain meds every time I can have another one, have Voltaren cream I can rub on my legs, which is a kind of NSAID but for the outside on the skin rather than taking it orally. I have tried warm water, standing on them, staying off of them, praying, lots of praying, and to no avail. I have already had a CT scan, and do not know the results yet. I HOPE to finally hear today, since it has been almost a week. Yet, I began to notice yesterday that it seemed there was a possibility the pain was not quite as bad. Now what I feel is more of a weakness, especially in the right leg. Once I stand on them for just a minute or so, my legs feel as if they may come out from under me. I felt several "odd" things yesterday, like rather than my legs hurting a badly, my arms, both of them from my elbows down hurt down to my wrists and fingers almost like my legs have been doing.  I seemed to have the "chills" off and on all day yesterday, but did not run a fever as far as I could tell. But, I am extremely fatigued again. That bone tired stuff I had when all of this began WEEKS AND WEEKS ago! My body just does not feel "right". Something feels "off" but I can't put my finger on what that is. I just cannot concentrate, I have absolutely no energy to do anything, and I've literally had to make myself do anything. Just before all of this began, my "New Years" list was full, and I was so looking forward to getting some of those things accomplished. Now, I feel if I have gotten off the sofa, took out the trash, made the bed, make myself do my exercises, and from there trying to keep the laundry done, groceries bought, and all of the other chores done, seem so monumentally huge,   it is difficult to think about them. I fear something bad is wrong, but then I fear they will not find anything which almost be worse that finding something to explain all that is going on. I feel on some days as if I am just going crazy. I have wanted to get this 2nd book ready to be published in May, but my motivation is all but gone lately. I have so much I wanted to accomplish, but as of now, all of that seems like a dream that is fading. Each way I turn, every time I face pn way, it seems their seems to be a stranger facing back at me. There seems to be a "red sign" flashing, telling me to turn around and try a different direction. Each one seems to be more confusing than the next. I woke up so totally exhausted this morning, yet I have to go with my Mom and find out about her echo-cardiogram. It seems there might be a little issue with a valve, which can be quite common with many people, especially as we age, some of those valves tend to allow it not to close and blood backs up the opposite way, which can cause some issues, or none depending on which it is, how much it does not close and so forth. But, I am sure whatever it is sounds minor, and there maybe nothing they do but keep an eye on it. I happen to have one also, and we just watch it, but really for now I am not to be overly concerned. I just know my Mom and since they called to tell her that Friday (I have got to have them call me for that kind of stuff, she does not understand, and she panics). So, I had talk to her on Friday evening, and explain, they just do that. Whenever tests come in, my cardiologist, whether normal tests , etc, she calls right away with answers, even if she is seeing you the next day. That is just how her routine is, which is a good thing. Rather than most of mine that don't let you know and you have to keep calling to find out what the heck is going on. Alas, I have LOTS of STUFF rolling around in my head this morning, and I feel totally torn down from all of the faith I usually have in life and things around me. So, if I seem "off" I probably am... guess I could blame it on being a Monday.... Rhia                                                           

Reaching, Reaching & more of the Unknown

I have tried my damnedest to keep the last 8 weeks or so in perspective. From the issues with the double vision, and not being able to get into another specialist until April, to the sudden onset of what I thought was the flu, it seems nothing is better. I have spent my early morning hours this morning going over in my mind the dates of when all of this last round of Lord knows what now is wrong with me began. I thought by going back over the days, the dates, what was happening at that particular time, & so forth something would suddenly dawn on me that seemed to help fit this puzzle together.
I even went back as far as just before Christmas, when Mother became down with a sudden bout of shortness of breath, that landed her in the hospital over night. All of that turned out fine, even though it did of course put a strain on us as far as stress goes. I know she was concerned even though the tests came back fine. I felt like since all of the tests were perfectly normal, there was not anything to be overly stressed about, but of course she was the one in the middle of it. from there of course a few days later was Christmas. There was not really any kind of stress involved there. We celebrated quietly, and in fact rather than cook on Christmas Day, we waited and cooked for New Years Weekend, and that made it almost more enjoyable. At that time, I was not feeling bad, and in fact everyone seemed well here in our homes. We did not go the the Casino as planned but the weather was not the best during that time, so we put if off waiting for better weather.
Then of course we had the news about my Mom's brother passing away on New Years Day. That came as a shock to all of us. But, he was 80, sounded like he just went to sleep in his recliner, and that was it. So, during that funeral, and the meal afterward, we got to see many relatives that we had not seen in a long time, and my Aunt, which would be Mom's only other living sibling, did get to come. But, she does have incurable cancer of the stomach. So, we do know that she is not well at all. Yet, she seems to be hanging in there, and so we keep on feeling blessed that she continues to be here with us and even though she seems a little "off" at times, which I feel is the medication, she does not complain of pain, and she rarely really complains about anything, other than the fact I know she is more than tired of the battle.
Again, though, that causes some underlying stress in our lives, but not anything new, since she has been ill now for quite a while. Our "New Year" did not start out the best, losing my Uncle, Mom's little hiccup, and then my daughter's entire family had been sick off and on with the flu and stomach virus, so of course there is some concern over them and the kids. Then comes this morning that I wake up and feel as if a tandem trailer truck had ran over me twice. My energy was totally gone, the fatigue was totally exhausting, I hurt from my toes, the bottoms of my feet to the top of my head. It seems there has not been one joint on me that is not aching and hurting, like someone just beat the holy hell out of me, and left me for the train to finish me off. I have had every kind of symptom of the flu there is. But, I have also had many of the symptoms that a Lupus or RA flare would bring on. Sore throats, swollen glands, headaches, backaches, my legs are just in insurmountable pain, deep to the bone aching pain, and a pain that feel as if I am on fire under my skin.
I have had the chills, my fingers are all split open to the point of bleeding, the bottoms of my feet hurt, I have been weak and shaky, my elbows both hurt, my right arm and hand stay cold, but my left at times seems to get warm. I am stiff all over, I am on edge, I cannot sleep, and then I am so tired in the afternoons I find myself on the sofa with the puppies watching a movie. I cannot wait for each 4 hours block of time to go by so I can have more pain medication. Which is ridiculous, since my PAIN PUMP had been working since 2010 and I have had to take virtually NO other medication other than some Sol-Medrol when I have Lupus Migraine. We have tried looking up every kind, in every way, searches for all kinds of rare illnesses you can think of. My hopes are that between all of the searches, symptoms, tests, doctors, etc... someone, SOMEWHERE, WILL FIND OUT WHAT THE HELL IS WRONG WITH ME!!!!!
Now, I have been to my PCP twice. They have done blood work, that I have NOT HEARD back on yet. I have been to my pain doctor. He has pulled all of the medication out of the pain pump, and completely refilled it, to make sure it does have the right medication in it. So, it should, and it appears to be working, as far as the pump itself. But, we do not know if the catheter is in the right position, and if it is working as it should. So, due to my symptoms being so severe in my lower back and down my legs, we did a CT scan on Tuesday. I am waiting to hear back on that. I have left a message, and have not heard from anyone as of yet. OF course, as with anything it is a "hurry up and wait" when it comes to tests. They want you to "hurry" and do them. Then they make you wait until they are damned good and ready to talk to you about them. Another interesting fact. I have ALWAYS been able to get my Radiology report from who does the CT Scan. Never have I had any issues. When I had the scan done this week I was told they can no longer "give the report" to the patient. Now what kind of a  crock of crap it that? It is MY TEST??? I should have the right to get it when I please. So, I am going to find out what that is all about. I signed a waiver even stating I should be able to get a copy, so whatever has happened about that, I do know they did a survey and 90 percent of the people said they DID want their results, they did not want to WAIT for the doctor! Just another one of those little things to irritate the crap out of us. So. that blood work, which was done two weeks ago, I still do not know I thing about, and the CT Scan results I am sure are sitting somewhere faxed over on a desk, and I can't find out about those either. In the mean time, I hurt like hell, and have to deal with the fact I DO NOT KNOW WHAT THE HELL IS WRONG!!! I have just about lost every single piece of patience I used to have. I have had more than enough of this pain, and even more than enough of being tested only to wait until someone else decides to tell me what they found or did not find. then I go to my Rheumatologist, who has been a "God Send", BUT he had to give up his private practice after 11 years now, and go to teaching, doing research, and seeing only a very limited number of patients, just so he can make a living! Now how screwed up is that. The best doctor I have been to in my entire time of doctors and as many as I have been to that are just plain BAD, here you find one that is sincere, caring, does NOT make you wait, gives you plenty of time to talk, really HEARS AND LISTENS, allows you as a patient to be a big part of your healing and illness issues, and he can't make a living due to insurance, the high cost of overhead, employees, and all of the bull crap that comes with having to have all of the malpractice insurance, plus the list I am sure goes on and on. It truly sucks. But, that is what happens, we have the good ones that can't make it. But, the ones that rook the system, that don't care, that treat us like a number, or a bunch of cattle, they put us in one door, run us through their little maze of mess, and out the other. Then send us on our merry way, with no explanation, only to want to charge us out the butt, and then do not file the insurance right. So, we spend 8 months or more trying to get them to do THEIR JOBS!!!! I have "fought the system" when it comes to the insurance companies, the Medicare mess, the doctors offices, hospitals, pharmacies... you name it, not just for my own filing and visits, but for my Mom also. It seems that NO ONE gives a damned if they do their job correctly or not. More times than I can count on my fingers on both hands have I had people in the insurance departments at medical facilities tell me, "we do not check to see if the insurance company has paid correctly, that is THE PATIENT'S JOB?!)  You mean to tell me you would rather for your facility that pays your salary get paid 200.00 on a 40,000.00 surgery, rather than check to make sure you are paid the 35,000.00 you are really owed??? then you come after the patient for their tiny part of 150.00 co-pay and want to hassle us and threatn to turn us over to a collection agency, when you were too lazy or stupid to file the claim correctly IN THE FIRST PLACE!!!! Then ask them to read the "EOB" from the insurance company!! THEY CANNOT TELL YOU WHAT IT SAYS!!! It is totally insanity!!! I know for a fact one of the surgeries I had the doctor did NOT file for the claim for well over 9 MONTHS!! after the surgery!!! Then his office tried to tell me that I owed a part I DID NOT OWE!!! I even got all of the paperwork together from the surgery, from the insurance company, set down and printed out why it was wrong, and why they needed to REFILE IT CORRECTLY IN ORDER TO GET PAID!!! And they still could not do it right!! They had sent it to the insurance under a "non-participating" doctor which was WRONG, they were, and due to that the insurance did NOT paid correctly! Then they tried to blame ME, due to their error. Literally is was 9 months to straighten it out and I don't think honestly they ever got paid on that expensive surgery correctly. You better believe when I worked in the business office of the hospital, we were RESPONSIBLE for FILING CORRECTLY!!! And we filed it again, until it was paid by the insurance right. It was MY JOB!!! But, now days they do not want to do their job, they want you to do it for them. My Moms bill for her wrist surgery is the same way. They filed it wrong, like a non-participating surgery center, thus they have NOT been paid right by the insurance. Yet they are trying to collect almost 500.00 from my MOM that SHE DOES NOT OWE!!! They told her what she owed and me also three days before the surgery, which she paid the morning of the surgery, and then they screwed it up. I have been fighting with them for at least 8 months or more, and after they promised they refiled it, I found out this week they NEVER REFILED IT AT ALL! So again they are pressuring her for money she does not owe.
The entire thing is insanity. If you are chronically ill, and have to see a doctor or have very many things done, you are just screwed. No One will do their job!!!! Okay, enough of my "SOAP BOX" FOR today!!!! I shall have more tomorrow:)  Have a good weekend, and pray I get better... I hurt like hell right now!!!!

Keeping My Fans Up to Date - A Conundrum Of Chronic Pain and Illness Issues...

I began this post a couple of days ago, more about my own personal illness and the reason I have not been here for my fans over the past several days. Yet, this morning, I begin to read the news, to find out one of our very good, and quite young country and western singers, Mindy McCready has passed away apparently from suicide. My first thought is WOW! I never realized she was having so many "personal" dilemma's in her life. I kept on reading to find out, her oldest son is living with his Grand Mother, and she had another son last year, whom it did not for sure say if his Grand Mother was caring for him also. But, being on the road as Mindy was, I would assume so. I also was not aware that the Father of her 2nd son also committed suicide not very long ago. Mindy must have fought issues with drugs, alcohol, and her own personal demons, which many of the "super stars" do. They get caught up in all of the drama, the clothes, the traveling, the living in a hotel room, eating from a bus, never really being with family much at all, and even though we think it would be an extremely wondrous, and glamorous lifestyle, many of them would tell you differently.
After all, in spite of their wonderful talents, they are "human". In many ways they are just everyday. usual people, that have bills, illness, deaths to deal with, family, children, homes, and even much more due to their fame. They never have a "life" of their "own". Often due to reporters, and news people in their faces constantly, they are never able to truly have the everyday life that many of them dream of. Don't get me wrong. I am sure for most of our "stars", that "dream style" of life IS what they choose, and it is what makes them the most content. It is a lifestyle, a job, a career, a unique challenge, whether you are an actor or actress, a writer, on screen, a producer, a singer, om Broadway, in Nashville, no matter what the venue, from Vegas to some little town in Texas, wherever your talents, your will to succeed, your scraping, climbing, having doors slammed in your face, whether you became rich and famous "very young" as a child star, or later in life after you feel you have paid many dues along the way, by hook, crook, luck, love, or however the wind blew you where you stand today, fame is your fortune. Fortune is success, and success is your life, whether you hurdled it all at once, or took baby steps along the way, it is a life style that some find truly amazing and satisfying, BUT we have also seen many BURN OUT, WE have LOST many incredibly talented men and women, and even young adults to the strings of drugs, of that "life in the fast lane", of the constant contact with drugs, with those who just want to get under your skin, your money, and take away what you have earned. thus here we are, another young Mother, a talented country singer, a beautiful woman, daughter, friend, with so many that loved her, and she is now no longer here. Within a breath's space, from life to death, she is gone. We have her wonderful songs, such as "Ten Thousand Angel's" to remember her by. That has been one of my favorite songs for a long time, yet when you really read her lyrics, especially to some of her latest music, she was reaching out through her music and asking for help it seems to me. As I read lyrics to "Scream" and "You'll Never Know", as much as we worshiped the beauty in those, she seemed to be filling in the blanks to her own private crossword puzzle of a broken heart. I hope at this moment her smile is as bright as ever, and she has crossed over that river to find "peace".

Even though we cannot "fit" into her shoes, we CAN fit into the realms of what goes along with the "loneliness" of how chronic illness makes us feel. Like those that are famous, we tend to feel isolated, alone, away from those we love and care about, and feel surrounded by a dark, black nothingness. We struggle with that black, dark pit often, or many of us do. We peer into that hole of nothing to see if we can find one iota of light shining through. If we need "light", all too often we need to "peer right into the looking glass of our own realm" and we see the brightness shining right through into our very souls.

With sadness and hopes for a bright future for her two sons, Mindy I pray you are now out of that hell that took you there,

Rhia

On Valetine's Day

If we figured the amount of roses bought, the amount of fine chocolates eaten, the incredible beauty of so many cards, thoughtful words, well wishes, of love, passion, hearts, the true meaning of what a special holiday for "lovers" adds up to we could probably fix part of the National Debt.
We are suckers for romance. Women of course are, but men, especially for this holiday are usually trying to possibly make up for the other times of the year they "forget" birthdays, or anniversaries, plus other special occasion before this one especially designed and designated to say "I Love You".
It is honestly peaceful and in pure harmony of life that I am thrilled we sit try to make this a very special way to celebrate how we feel for those who are most important in our lives.
All too often we deny ourselves, and those around the mentioning of allowing love to seep in and show the strength there is in loving someone and also being in love, to have them share their moment of showing how great that love is. After all this nation and this world has been through over the past year, even the past 4 months, we should all be telling one another how we feel. For so many young and old, rich or poor, healthy or ill, we have watched the lives of these events effect our children, our teachers, and there will forever be a making their way a little differently through what we sometimes take for granted... May we always allow "V" Day to ring in our hearts....  no matter how lousy life gets on any one day... my hopes are that we stand upon the foundation of the true and pure "goodness".