When Your "Gut" Tells you something is wrong, listen!

I just have to tell you very early this morning (my dog actually woke me up, so I just stayed up) . I had a visit to my Rheumy yesterday. I was telling him the entire ordeal about the double vision, and about the "specialist" that I went to, and he had this strange look on his face. Comes to find out, Jim and I were very "hit the nail on the head right" about that entire thing!!! My Rheumy was VERY FAMILIAR with this other doc. He had seen patients before that went to him and they had gotten caught into the same web if crap I did! First, the "HIGH" number of the "blood test" ran that this eye specialist did, was THE WRONG TEST! I had thought so. It tests more about inflammation and what it has to do with the HEART, not the temporal artery! 2nd of all this HIGH was NOT that far from NORMAL! He told me ay number of things could have caused that small of a shift in the inflammatory part, of which I HAVE, Lupus, RA etc. Then the BIOPSY was a total waste of TIME, MONEY and should not have been done unless other things indicated it really needed to be done. It was an invasive procedure, that is safe, BUT it can have its complications like anything else, like paralysis on that side of the face if they cut a nerve! One more thing, usually "eye specialists" do NOT treat Temporal Arteritis! It is an autoimmune disease that Rheumatologists usually treat!!! That other idiot should have sent me to my Rheumy with it. He said it is one of the most wrong diagnosed things, because many doctors often do not do the correct test and do not understand the numbers "that are off" enough to indicate this AI illness. We were both just about ready to fall out of our chairs when he told us all of this. Here we were basically saying the exact thing, I even hesitated twice and cancelled the biopsy, because I felt it was not needed from what all I had read. But this guy has you by the "ba-0s!) he is telling you that you could go blind, etc and making it sound like if you do not go through with the biopsy something bad will happen, and so forth, pressuring you to say you will have it done!!!! And here the guy is with a waiting room FULL OF PATIENTS, many I bet are not needing to be there, or may not be getting the proper treatment and so forth! Any doc that says he "sees" a 100 patients in a DAY something is off! I am starting back on the Humira and stopping the Orencia. He told me often people with chronic pain go through this issue. I had gotten some relief from the Humira, but the daily pain in general makes it harder for us to feel whether a new medication is really helping or not. We may think it is not, and then discover if you switch to something else, the first one WAS making a difference more than the 2nd one. Which is probably what happened in my case. I just thought the Humira was not helping as much as it really was until I tried a different biologic. Now I can tell it was helping me much more than I thought. Now that is not counting the ridiculous unprofessional situation I went through in the OR as I was just waking up from the anesthetic!!!! As we thought, that was over the top, and should not have happened whatsoever. I just felt like I as going through de ja' vue when I heard my Rheumy talking about all of this. We both looked and him and said thank you for verifying that we were not crazy, and all of our instincts and information we went through was correct! I never did really get the correct testing not diagnosis because all that was done was probably wrong. So, if we are well educated, and not stupid people, and it happened to us, can you imagine how much he makes off of those that do not go and research their own medical stuff? Or check out whether what a doctor is telling you sounds reasonable or ridiculous? IF your first "gut" instinct says something is OFF, than some is really more than likely, off.

Ready to end this Election Season...

I am sure I am not the only one sick and tired of the way we have been inundated with enough election media and information to last us at least another 4 years! It seems when we feel it cannot get any worse as far as media and some of the worst "lies" that ever comes from politicians mouths, the next election brings even more. This whole ordeal with "big corporations" being allowed to "foot the bill" on their favored candidate is a bunch of "Malarky" as VP Biden put it. What ever happened to the people having the say as to whom runs our nation??? Well, when a choice few with the big bucks can have more pull than the everyday people who are the ones that keep this nation running, then this world has turned upside down and inside out! I am so hoping, (and I know it ion the bottom of the totem pole list of things to do) that their is an overhaul of just how the election process is ran by the time another 4 years rolls around. We need some people in a group that are totally non-partisan, to get some road rules of the game set up where everyone is on an even playing field money wise, and this wanting an "id" to vote business, as well as lots of other issues that get swept under the rug after the election is over type thing. You can also probably ask 100 people on the streets about the "electoral vote" stuff, and none of them could tell you exactly how that is ran and what happens, and why it is supposed to work, as far as the election of our President goes. I think it is a totally antiquated system, that for the most part not one person in the everyday world really gets. Plus, I also do not think it is fair for one party to be able to cough up millions of dollars more for ads that should not even be on television, much less to have more pull just because of "monetary" means. OF course we all know the "GOP" loves the fact that the are the rich old cronies, that do have each others backs (even though they also stab each other in them)... and it just leaves an even keel when it comes to people and our voting rights. NOT ONE DIME OF MONEY should be able to influence an election. It should be totally decided by the people, and give them an open without cost (FREE ID'S if you need one to vote), plus if things like this electronic voting is causing longer lines where the elderly, as well as others  that are ill and so forth, the exact same level ground to place their vote, and that their vote counts the same as the person next door. To me, this electoral vote thing is an old and outdated way of allowing the GOP to have their fingers in the cookie jar as they usually do. They have done it since the beginning of time, and it is going to be that way forever unless we stand up and say we have had enough!!! I am also puzzled beyond belief that women would ever stand up and be counted in for Romney. He is a "womanizer" from way back. He would hurt his own Grand Mother if he thought he would benefit from it. He could car less about women's rights, from birth control to rape, and all of the things we, as women are entitled to. He could care less about Medicare, Social Security, Medicaid, helping the elderly, or anyone that is in a "minority" situation. That man is for MONEY, GREED and Power!!! (and I am still writing on my "Greed" Post)... As I see it, I vote for who I feel can DO THE JOB as best as possible. I don't care if they are GOP, Democratic, or the neighbor down the street. As long as they can get our country out of debt, our people back to work, get Medicare and Social Security solvent, get us out of the war zones, help get more money in medical research and development, and truly handle what is important to the middle class, the working people... his "political race" does not matter to me. It is how he conducts his business when it comes to going about helping to put our business back in order.
I am sure I am stepping on some toes, but this is my feelings, and I am not going to dismiss yours at all. i just wanted to tell it from my point of view. I am ready for 4 MORE YEARS TO ALLOW PRESIDENT OBAMA, to straighten out more of the stuff in this nation that was screwed up YEARS BEFORE HE BECAME PRESIDENT!!!! As of late I have gotten to the point I feel the media has gotten so greedy also, they tend to stand more on the lines of "not really telling it all like it is". If they can manipulate a story or sensationalize it, then they get the attention, thus more money. I half way do not trust much of what I read or hear from our news media these days. It is just a matter of many of the "big wigs", have well forgotten us everyday folks, that want a home, a job, a car, to be able to take care of us and our families, and not be lied to, taken advantage of, neglected or have the life we work so hard for taken away by those who like reeking havoc around the globe. So, with the elections over tomorrow, my hope is that our President will be able to once again concentrate on what is truly important, jobs, housing, gas prices, food prices, education, our infrastructure, new and alternative energy sources, much more research for so many health problems, help for the elderly, disabled and less fortunate, getting our troops home, keeping our nation safe, keeping open lines across the globe and allies that are true to their word and want to help to make things safer and more peaceful. As we close the process tomorrow may we find a new direction, a new light, and a sense of some kind of peace, looking for a new dawn, and moving..... FORWARD!!!!!

In the Wake of A Monster Storm - More signs of the times...

It so so difficult to even think about the unfathomable amount of loss over the East Coast. As the stories continued to unfold, the loss of life, homes, everything for so many people, cities, entire towns, and our economic situation, we try to find reasons for why this has to happen. I know it has to be a question that runs through all of those in the wake of this "massive monster storm", as to why our country endures such a loss that is too big for words. Yesterday, as I went to run some errands, I happened to have to run to get my dogs some medication. There is a woman there I know, and she was in the process of getting the channel on the TV there to watch what was happening as far as the storm. We got to talking, and her comment was "She felt this was a "sign" of the times", which I feel the same in many ways about. These types of "Monster Storms", along with all types of unthinkable natural disasters are so difficult to view any other way. Then you take all of the other issues through out our nation and our entire world. From those who run through streets of entire towns killing innocent people, to those who march against all of us as terrorists to harm not only the USA but so many other countries around the globe. When you see a young person who is ready to strap a massive amount of material that will blow up or put it in a vehicle and know they will take their own lives "in the name of whatever" to hurt, maim, and do untold harm all around, those people are another sign of the times. We have untold amounts of people without jobs. Our water, our ground, our oceans, our air.... our food, everything we "intake" into our bodies is basically full of one type of contamination or another, whether it be "hormones" to make them grow quicker, or antibiotics, or preservatives, all of it in one way or the other must harm humans. We see massive forests disappearing, while more and more concrete takes over. Our air is so polluted, we see more children, and record numbers of adults that never had asthma now developing breathing and lung issues because our air is so full of contaminants. Our economic situation has not been this bad since the "Great Depression" and in my opinion it is "worse" in many ways that the depression of the 30's. We have so much GREED, corruption, negligence, and other types of those who choose to be more for themselves, than to help their fellow neighbor, that jobs for the "everyday" people are gone, We have "technologically" damaged our selves out of jobs. We have changed "main street" America into huge amount of businesses that offer more "title loans", pawn shops", "cash loans, gold buying places" rather than shoe stores and clothing shops. It is SAD when I drive through my small home town, and it seems every month yet another "Payday" loan, "title" loan, or pawn shop opens up, in what used to be places we bought items from local shop owners. I can count more than 10 to 12 of these types of businesses, and more coming in by the numbers. It almost makes me sick to see them. Thus, I feel the same as what she and I talked about, it is truly, a sign of what is coming very soon. We are headed for the end of times. We are headed for utter destruction; those that do not have their "business" in order(and I mean their "heart" and "soul" right with their Higher Power") should be truly thinking about that business, because in my heart, I feel ready. I added as I left from talking to her as she said what I felt.. we have taken "Higher Power" (I won't say God" since I feel everyone thinks of that entity in different ways), out of everything... out of our homes, schools (kids cannot even say a devotional as we did in my elementary school), and yes businesses and yes our government! I realize the separation of "church" and "state" BUT that does NOT mean to IGNORE WHO is the very essence of all people. Let's face it, we were a much better place, when we had our priorities straight in lives... putting the most important things first, saying grace, attending church, giving our children a solid foundation of morality to stand on... and I say morality, because that means how to treat others, how to run their lives right, without harm to others... teaching them RIGHT FROM WRONG, and parents these days just DON"T for the most part, look around... at all of the things that are just "wrong". yesterday, we went out to eat to celebrate my "1st book" being published...there were only a handful of people in this local buffet, and 3 of the women there honestly were so obese, to the point of not just obesity, but it was "morose" to even watch them fill plate after plate! with more food.... and GLUTTONY is the only word for it... these women did NOT have medical issues, or other things that were beyond their control making them that huge... they were all relatively young, well below the age of 40, some probably in their late 20's.  IT was to the point of being "repulsive" to think about eating, when we saw them continue to walk by with full sized plates, one after the other FULL and overflowing with food. I don't mean to be offensive at all. I am NOT talking about those who have weight issues that truly cannot help it. Those with medical issues, and other reasons that they are overweight have nothing to do with what we saw yesterday evening. Even I worry about my own weight due to the medication of Prednisone I take. It is a small dose, but it is daily, and it can cause weight issues if I don't keep a daily watch on my diet and exercise. But, these types of issues, look around at our young people, they I would say 60 percent of them overweight or obese in our society now days. These are just a few things that all point to there is a short time left here. I am NO PROPHET!! I don't "foresee" the future and I am not some fanatic... I am merely giving out what I see, hear, and feel in my own heart and mind.... things are out of control and we should stand back and really survey our lives, and decide what truly is important today, tomorrow, and the days we have left...none of us know that day, that moment... but for us that believe we do know it is all unfolding...

The Amazon.com LInk To Ramblings of a Seasoned Soul "Brush Strokes of Life In Words"

Here is the OFFICIAL AMAZON.COM link to my New Book! I am so totally thrilled!!!

http://www.amazon.com/Ramblings-Seasoned-Soul-Strokes-Volume/dp/1461061946/ref=sr_1_1?ie=UTF8&qid=1351633040&sr=8-1&keywords=Ramblings+of+a+seasoned


It is also listed below in the post from yesterday, but I wanted to make sure it was visible.... Hope all is well with you and yours across the country.... My heart and prayers go out to all on the Eastern Sea Board.... I have had you on my mind since 3:30 am.... Rhia

Ramblings of a Seasoned Soul "Brush Strokes of Life in Words"

                                         Ramblings of A Seasoned Soul
                                 Brush Strokes of Life through Words

 https://www.createspace.com/3587328?ref=1147694&utm_id=6026&fb_action_ids=4425618113428&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=288381481237582


It is Done!!! Finally after so many years, way more than 30, I have published my very first book! I pray there will be several more to follow! For most of my life, I have written, poetry, journal writing, just writing. I write for all kinds of reasons, through pain, happiness, sadness, strife, chronic illness, love, laughter, and life above all!!! I promised myself that before I take that one last breath, I would get a book published! TODAY October 29th, 2012, is another one of those monumental days of life that make you feel you are standing a top your own mountain and not one soul could ever make you roll down again! But, those rolls down are what gave me all of the words to make this book and the ones to follow reality.
I am excited to share these poems with my family, friends, and all of those that have been an inspiration along the way. My favorite song lyrics (one of many) has always been "when they carve my stone, all they need to write on it, is once lived a girl who got all she ever wanted, tell me something... who could ask for more.... to be living in a moment... you would die for... alas this is one of those shining moments... a day in my own life that is one of infamy! My hopes are that in reading these works of life, love, pain, and all that go into the spaces in between, you are moved to climb to your own mountain top... and stay there, with the sun shining upon your face. To all that continue to inspire me.... I am honored.....

Rhiannon


HERE!!! is the OFFICIAL Amazon.com link to my new book!

Ramblings of a Seasoned Soul - Amazon.com Link

For All in Harm's Way of this Massive Storm of Destruction Please Heed the Warnings... our prayers are with you...

As I scurry to read about this massive possibly deadly and most certainly destructive storm, I like so many thousands and thousands across the nation and world are thinking and praying for all in harm's way. It is so difficult to fathom Mother Nature can decide to throw such a massive natural disaster our way and within moments, take live and turn it upside down. But, it can certainly do that within the blink of an eye. speaking of the "eye" gosh, in looking at the size of this monster, just the cloud cover alone tells you the drama that is about to unfold over the entire Eastern Coast Line.... When it is going to possibly effect the Great Lake's around Chicago, with a storm surge, as I believe I read, the just slowly begins to allow me to understand the horrid amount of damage to possible life, and then to thin of how many lives will be effected in one way or the other by this storm as it comes through on its very slow path. From dumping more than a foot of snow in the mountains of Virginia, to flooding possibly the New York and New Jersey subways, to storm surges that could wipe out entire towns, it tells us we ARE NOT IN CONTROL!!! The only control we have is to make a "smart" choice early enough, and get the heck out of the way of this monstrous and massive Lady Storm... Honestly she is NO LADY but more like a "BIATCH!"... hella, helluva, or however you want to put if, it is one hell-a-cious disaster in the making. I realize just the thought of losing everything... your mementos, your memories, your home, and possibly everything you have acquired in your entire life is a night mare... and it must be hell having to leave so much behind, BUt saving your family and your life is so much more important. SO, PLEASE if they are telling you to get the heck out of this storms way, and evacuate... please heed those warnings and get to where you are safe... your life is so much more important, and memories can remain in your heart, items and things can be replaced... and you can put that back together... even though it is extremely difficult.... I know due to living in "tornado alley" there have been times I was not sure I would have a home or not over the years when the huge Cat 5 and even the smaller tornado's roll in you wonder what will be left within moments after ward... and often it is nothing... but all that are in the path of destruction I hope do truly get to safety.... remember all of you are in our thoughts and prayers over the coming days... and realize even when it passes it can be far from over due to whatever Sandy decides to dump in your area...

Medical REAL LIFE horror in the OR! Totally UNWARRANTED!

this is the largest mess I am seen in our medical society and just continues to get worse by the moment! It is a testament to just how fouled up we are with our medical situation in this nation. My questions is HOW can VIALS of a medication that goes through many hands, from the compounding pharmacy, to the hospitals pharmacy, to the nurses who pick it up, to those who handle the vial in the OR, to even the main OR nurse and the DOCTOR!!!!, and you mean to tell me NOT ONE person saw "CRAP" floating around in a CLEAR VIAL of medication???? How can that be??? So many people handle a vial of medication for injection like that, thus missing some greenish black or white filament like stuff floating in fluid that is supposed to be either clear or even if a little cloudy when shaken etc... SOME ONE should have SEEN IT????? We have TOO MANY PATIENTS, and doctors that SEE too may patients, they do too many procedures daily, and that is why these kinds of mistakes are not caught somewhere in the chain. BEFORE doctors had to FIGHT TO KEEP ENOUGH MONEY TO HAVE A PRACTICE, any and all of the staff that saw those "vial" of contaminated medication would have been very aware that something was very wrong. Now, doctors barely even know who someone is in their office and probably less in the OR!!! They have a chart, a nurse to make sure they have the right person and other staff like the anesthesiologist to keep the patients straight, and doctors do even surgeries like "herding" cattle through a shoot for slaughter! It is one after the other... half the time, they don't even "close". Some assistant does the final suturing, stapling, gluing or however the final incision is closed. Believe me, I can tell the difference after surgery of the doctors that KNOW THEIR PATIENTS and they do the surgery from opening to closing every step. I witnessed this idiot that did my biopsy on my temporal artery the other day practically running out of OR, stripping off that gown to hurry for a new one, and I heard them say yes, the next one is ready basically! Now you tell me how the hell we don't have even more medical mistakes from bad medications (contaminated), to wrong medicines given, to wrong surgeries performed (and their are more than we really know), to nurses who do NOT follow doctors orders(and I have experienced MANY of them), to any and every other type of "so-called accident" there could be in the realms of medical care at any facility!!! These types of issues have gotten to be so "mundane" compared to all of our other mess in the world that the news medical "don't feel this kind of stuff is NEWS WORTHY ENOUGH to even talk about anymore. This is the very reasons our entire system needs to be changed. this business about doctors overworked with too many patients, and too many not needed procedures, scans, X-rays, blood tests, expense invasive things done, and the list goes on, and all due to the name of the game..MONEY, AND GREED!!!! I was speaking of my book just below, here is the subject of an entire book for me!!!! I have been through enough surgeries, tests, procedures, doctors, and seen mistakes in my own life as far as medical mistakes to FILL A BOOK! One in particular was so bad it ALMOST COST ME MY LIFE! And I am NOT JOKING about that one. IT alone could be a book. So, this is very near and dear to my heart. Our system is BROKEN, it is filled with doctors who have to do enough "procedures" "tests", surgeries and what have you to be able to keep a business open! I just kind of "lost" my own Rheumatologist who had his own PERSONA PRACTICE open for over 7 YEARS!!! But, due to the ever climbing prices of the business he had to CLOSE IT AND GO TO TEACHING, RESEARCHING, and then SOME PRACTICING, BUT ONLY PART-TIME NOW!! And he was the BEST Rheumatologist in the DFW area, in fact I venture to say in TEXAS! He knew his patients, he was never late, he ALWAYS LISTENED, HE never over scheduled, when you needed prior authorization on medications, he DID IT RIGHT THERE IMMEDIATELY HIMSELF IN THE ROOM, I mean the man knows his stuff. I could not fathom him unable to meet his obligations, but it is due to the horrible mess with insurance companies, Medicare, and the entire screwed up ball of crap our medical situation is in!!! Good doctors cannot survive!!!!! I have been watching this since it first unfolded as I said above since my issues of 2010 honestly almost killed me. It was supposed to be a "routine" gallbladder removal. I can tell you it was anything but "routine" and it went so far beyond a gallbladder removal, that when in the end was more than likely NOT NEEDED! It just goes to show, sometimes "things are not what they seem", doctors should TAKE MORE TIME TO SEE THE EVIDENCE, rather than waiting for a million tests, get down to the brass tacks of what is really going on. I realize my circumstances were very emergent, and symptoms revealed things that appeared to be gall bladder related. But, the surgeon that done the procedure either fouled up, and never admitted it OR something went very wrong in the hours following that surgery. What made it worse, is because it HAPPENED to be  "WEEKEND" so rather than try to nail down the problems or transfer me, they waited.... AND ALMOST WAITED TOO LONG!! By the time I was finally transferred to another hospital, it was almost too late! Even then my life was very touch and go for days. They had called my family in to be "together" more than once during several of the operations I endured over the coming days. I believe I was more in the operating room than out, them trying to first even establish what the real problem was, then what to do to fix it. Still honestly till this day, even reading the records, I don't think they knew what the issues really were, other than I was extremely and critically ill. I lost over a week or more of "time" where I had no clue what happened. My husband has tried to fill in the blanks, because I was so severely ill, and had so much medication in me, that I don't remember many of the surgeries that went on. There was an entire week, that I thought that my husband never even came to the hospital yet he had been there every day, sometimes he drove two times daily all the way from Ennis to see me. It was a living hell for him and my family... and for me! I, at the time was so ill, I did not realize just how badly things were. But, each time I see something like this, especially when it involves a situation that SOME ONE COULD HAVE CAUGHT THIS!!! , PLUS IT SHOULD NEVER HAVE HAPPENED! I watched the news and saw last night,  A COUPLE BOTH HAD INJECTIONS. The wife passed away, and now the HUSBAND is ill with meningitis!!! So that family may lose BOTH PARENTS to this absolutely stupid certainly KNOWN error. It proves once again GREED RULES! Due to being cheap, to make a few bucks rather than sterile and clean to save peoples lives they went for the cheap, contaminated, filthy route! Can you imagine being injected directly into your SPINAL FLUID THAT SURROUNDS YOUR BRAIN WITH MOLD AND CONTAMINATED MEDICATIONS?????? It just makes me ill to even think about it!!!!!

Compassion for those that maybe strangers, or friends... showing a little kindness

Many months back, I began to think about the ways "humans" treat other "humans". Within our daily normal walk of life, we usually encounter many people. If we have children, are employed, or run errands, pay bills, go shopping, or anything that requires being out of the house, we more than likely see someone that we have an opportunity to speak to. Neighbors are probably our closest as far as having a conversation. If you have people living right next door to you, and you are not far out in the country without close neighbors, I would say you see them in their yards, picking up the paper, watering, washing their car, taking their kids to school, going to work, and so forth. Thus you have ample opportunity to get to know or at least be somewhat familiar with who lives beside you, or possibly on each side, like us, as well as a couple of the homes across the street. We know all of them. Now, this does not mean we have dinners together, or visit on Saturdays, but we all know one another well enough to be of help to each other in an emergency, or to say hello. If one of them have been ill, or are chronically ill, we also know them well enough to be able to ask how that person, or persons are doing. If they are elderly neighbors, for them, often times, it is even more important for them to know their neighbors. They also could have an emergency with illness, be locked out of the house, etc. and need a helping hand. If you have lived where you do for any length of time, think about how well you know those who live closest to you. Do you know their names, their ages, if they have kids or are they elderly, possibly living alone? D you know if their is a chronically disabled or ill person living close by? If you have no clue who your neighbors are, and you have lived in that same place for years, then you should definitely introduce yourself. Make an extra effort to at least speak when you see each other. You might be surprised what a smile and a good morning could bring into your life, and theirs as well.
After that spiel, I will now get down to the "brass tacks" of what my example above is all about. That is the fact people in general "lack" compassion anymore. Their is a lack of several different types of the way human treat other humans, from empathy, sympathy, greediness, patience, kindness, lying, uncaring and the list goes on. I have been on the band wagon of the lack of compassion I see in people these days, as well as the severe "greed" we see in this country, as well as the entire world now. It used to be that people helped others. Whether, as I was talking about above, neighbors helped neighbors, whether it was building a barn, or having a dinner, and towns were full of compassionate people that truly had a heart and cared for their fellow townspeople. Right now, even if you live in a small community, I would bet you could tell me you do not know all of your neighbors, you have not said "Good Morning" to a totally complete stranger in months. Maybe I am wrong about you, but I can tell you that I see more people tat seemed to be so totally "spaced" out when they are in the stores, I think the President or a famous singer could walk by and they would not notice. Even in this small community, you can go into our largest market here (and for the most part everyone recognizes one another, BUT the checkers for the most part could not say whether certain people came in, dressed "out of character", or had their hair dye funny or was some type of "celebrity". They have been "trained", almost brain washed into saying "Hello", or "Good Morning", or "Have a Good Day", yet who they said it to would be another story. I have heard of famous singers stopping in small town markets and going in themselves, yet not one person looked enough at them to know who they were. It is not just the checkers at the market, so I don't mean to pick on them. But, they are a very good example of the whole process of not really "caring" or being compassionate, or truly knowing who you are speaking to. Yet, we see it all over. I know I am "the pot" calling the kettle black, so to speak. I am sure I do it at times to. Yet, most of the time I DO pay attention to who I speak with, what they say, who could be with them, how they are dressed, even down to what is in their basket, say we are in Wally-World...
For me I am a people "watcher", and I do NOT mean in some WEIRD way. I just really enjoy seeing people the things they do and don't do, the way they dress, what they might put in their carts, how nice they are, or how "sulled up" they seem, and unfriendly. I find humans to be extremely interesting creatures. From the way we talk, dress, what we buy, eat, drive and many other things we can see about one another is a very amazing thing to me. I think that is a very huge piece of the steps to being compassionate to others. If you do not "SEE" they are in pain, or have a bandage, brace, or incision visible, or if you are not really "listening" to what someone tells yo, you certainly cannot be compassionate to their feelings and needs. For instance, when I have had my surgeries, like my 4 level cervical neck surgery about 15 weeks ago, I made sure, even though I did not have to wear it, that I put my hard collar on to go into any of our bigger stores. Without some kind of "sign" and at times they do not even notice that, people will run over you, stand in your way, run into your basket, not help to take your sacks to your car, etc. So, in order to be "safe", I wore that collar for weeks when I drove, or went out shopping anywhere. Same way with my knee surgeries and so forth. Even though I am NOT looking for "Sympathy" or for someone to feel sorry for me, what I am looking for is the decency to see I am "disabled" and I do need to be treated more carefully. But, honestly, we should all EXPECT to be treated with decency and kindness! WE should feel people should say "excuse me" or "pardon me", or "I am sorry", and things like "Thank you", "Hope you feel better soon", and the list of short, a few word sentences to even strangers out in the world, should all be given "compassion", and feel they are "worth" it.
I see people that don't hold a door open for someone, or ask them if they need help with something off of a shelf, if they maybe in need of assistance. And that also goes two ways, we should RESPECT those who do check us out, sack our items, possibly take them out to our car, work in gas stations, and so forth. IF they treat us with kindness, we should reciprocate for sure.
I can honestly walk by and see the look on certain faces of people and know what kind of mood they are in, whether they are a pleasant person, or crabby, stern or kind, and the list goes on. I don't really think of it as a "6th sense" but more really observing people my entire life.
When it comes to compassion that we that are chronically ill or in pain would appreciate, is the fact that those who KNOW we are ill, checking on us, if we do not have immediate help around us. Maybe a quick email, or a phone call, to say hello and ask they need anything. If someone is in a brace, for their neck, legs, back, etc, give them a little extra room, and extra time to walk around in a store. Or if you see someone moving slowly or holding onto a basket, more than likely they could have a chronic pain day, or a flare with FM, Lupus or RA. Or if someone seems to be squinting, maybe putting their hands to their heads, or general symptoms of a headache, backache, etc., if nothing else tell them you hoot they get well soon, or feel better soon. I know we can make up all kinds of excuses, and there are so many of us chronically ill or in pain or both, that get completely shunned from not only friends, but worse... their family! Family members sometimes "do not believe" a loved one is so ill. The number one thing I hear is "well you don't look sick"??? Well, just because you have a very serious, chronic illness or pain, does not mean you must look like "hell" all of the time. We do have days that we feel "more human" than others. Also, the family tends to get mad because we can't help them out as much, or maybe do need a hand with certain things. Well, that takes up "their" precious time. Why is one person's time any ore precious than the others? We each are given the exact number of minutes in any given day. So, mine are just as important as the next person's. Whether they be a "professional", like doctors, who are the world's worst about thinking THEIR time is more important than the patients time. Or people that drive, running red lights, stop signs, talk on cell phones, text or whatever they do, and can cause a serious accident, because being a minute late is more important. I would much rather be a few minutes late than run over someone and injure or kill them. So, a few minutes late is not worth ruining your life and someone else's also. So, those that have a severe "lack" in the department of compassion for humans in general, surely are going to be even less in the same department to someone who is disabled. I find when you see someone with a "sour" look on their face, you can sometimes just say, I like your dress, or a piece of jewelry, or you could tell them Hello, or just make eye contact and smile with them. You would be surprised how people's entire day is better because you took a moment to smile at them. Little things can move huge mountains. People have a need to feel "special". Whether they admit it or not, they want someone to respect them, notice them, or just say something nice to them.
I can tell you from personal experience as a woman with chronic illnesses and chronic pain issues, that I already face a huge amount of shame and guilt at times. When we are on a cane, or parking in a disabled parking space, or maybe we have a brace on our neck or are just going slowly due to pain, stiffness and so forth, we feel everyone staring at us, and feel that people do not believe we are really ill. I can also say that being disabled is something for the most part we try to "hide" our physical problems. We put a smile on no matter how bad the pain is, we try to "walk normally", and put on our "best" behavior outside our home. I don't want someone feeling "sorry" for me at all. BUT, it is appreciated if just in looking at you, they show in their eyes some compassion.
The next time someone who "appears to look young", or looks like they are "not ill or disabled" is parked in a handicapped zone, but gets out of the car looking "fine", please think BEFORE thinking your first thought! More than likely they are ill, but you may not see just how badly. For instance, I have Lupus, Degenerative Joint and Disc Disease, RA Osteoarthritis, Osteoporosis, have just finished having a 4 level cervical disc and fusion surgery, have a shoulder and both knees already replaced, plus various other issues and surgeries. But, I make "appear to be well" when you see me out on the street. I could be having one of my "good" days, or maybe I feel lousy but I just refuse to show it.
So, the next time you are out and about around town, take a moment to say hello to a stranger, or greet your neighbor in the yard... or say thanks to the checker.. maybe hold the door open for someone, but most of all, really look around to see this world has many people like myself, that want to have a "normal" life, yet that is not the hand we have been dealt. Yet, we still would like to have a little understanding and compassion from friends, neighbors, family and even strangers.

"Negative"??? or just BETTER on the Giant Cell Arteritis!

Well the biopsy was negative, which is exactly what we expected... plus he never admitted that the Prednisone may have healed it before we could get the biopsy done...he just said well it is negative for Giant Cell Arteritis... of course which is good...
The jackass did take out the stitches...BUT it really was NOT quite healed enough and now there is a kind of GAP there!!! and of course it will show on the side of my head with a scar if it does not heal right, plus he said "be careful" because it may split open, and the first thing that happened is I accidentally bumped it putting on my glasses, he did not even butterfly it or anything!!!! We got some and my husband put them on right away... he then had the audacity to want to see me in a week! Hell there is not any more he can do.... we asked him what was wrong.. he never admitted it could have been the Arteritis but the Prednisone already fixed it, like we both read... and then he would not admit possibly he did not know. and made some remark that it could be "several" things the Prednisone may have helped!!!! Plus not once has that incident in the OR he pulled been mentioned. WE feel like something should be done or said about his actions especially since he never bothered to apologize to me over it... we are totally disgusted, and feel like it probably was just as we thought, the Arteritis... that did get better due to the higher dosage of Prednisone... and we are NOT going back next week... if I have a new symptom or it was to get worse, then I will jump that bridge when I get to it..

The entire ordeal has been a nightmare from the very beginning and all He did was make it worse, with the bull crap he put me through basically for nothing I think! I am happy the biopsy is "negative" but from the start I think as a Doctor he is more concerned about MONEY than honestly the patient's well being. Maybe I am wrong, but then to NOT say a word about his terrible stunt that I talked about in the OR while I was jut out from under the anesthetic, and to just really never say either I "think" this may have been "this or that", or plain admit he was really not sure what was causing the double vision, he just shrugged us off and made ANOTHER APPOINTMENT IN A WEEK!!! FOR WHAT!!!??? To charge my insurance more!!! I have already had like 8 visits or so in about 6 weeks or so... it is insanity... and I am off this roller coaster of madness starting NOW!!!! It just goes to show you MUST watch out for YOURSELF!! Just because they are a DOCTOR, nurse or other health care worker DOES NOT MEAN they have YOUR BEST INTEREST AT HEART!!!!!

Did you say another New Doctor!?? Or Which Procedure??!!!

I sit here and it is so EARLY on a Sunday morning I have to wonder if I am with half the world that is up, or am I NOT with the other half that is in bed. I know that for many with illnesses that are chronic in nature, for instance, Lupus, and/or RA, being UP in the middle of the night, when you should be sleeping gets to be part of the normal in your life. For me, the night terrors are mainly what wake me up at first. Then it is the pain of my joints, especially wrists, fingers, ankles, thumbs and feet that make me decide not to go back to bed. Sometimes I am up for a hour, and then wind up on the recliner sofa, with one of my puppies, Bubba Gump, and I get some more rest sleeping there for a couple of hours. Other times, I find myself in a mind set, that I NEED to DO, THIS, THAT AND THE OTHER, or I will be running behind, so my MIND keeps me UP, rather than it resting as it should. Either way, if I stay up as I am now, by the afternoon and early evening I will be feeling it, physically and mentally. I also am having a horrible time with headaches again. I had not dealt with headaches for several years, and then all of a sudden, I have just had almost one continuous one, that give me a breather for a few hours or a day, then it is right back in full force. Alas, the first part of that is an explanation (the opening) to the matter of what this new post is about. For anyone that is healthy, I realize you even have the occasional "well-visit", check ups, flu shots, etc. So, in a years time, you may be in and out of the doctors office or having routine lab work done a couple of times a year. Yet, when you have someone like myself, not only do we seem to almost "live" at a doctors office, we usually have at least 5 and more often more than 5 we have to deal with on a very regular basis. There are weeks that I may have 3 doctors to see for some type of visit in any given month. Then there are the endless it seems, number of blood labs, X-rays, CT Scans, and various other types of medical tests that come up, when you are ill with a different symptom, or something needs to be rechecked. Blood work is a huge one. My veins are so full of scar tissue, it takes an act of Congress, and the Lord to get a vein, that does NOT ROLL, does not "blow" on the technician, or even is able to get blood from. Plus with all of the scar tissue, at times they just cannot push through it, and then I have a huge number of "valves" that make is even more difficult to get through and get a "blood return". My last surgery, which was my cervical 4 level spinal surgery gave the nurses and even the anesthesiologist a Migraine for sure!!! Literally, I counted 19, YES I said 19 TIMES to get the needle in and to get a blood return enough for the IV to begin dripping. One of the times that happened, they decided to do a "central line" on me, right into a main artery. The problem is since they don't have an IV in the first place, they must do the "Central line" with NO relaxation medication, so you KNOW what is happening, an it is extremely uncomfortable! It does the trick, and certainly is much easier than worrying about an IV collapsing etc, when you have to have one for surgery, and then several days in the hospital, so you do not have to be stuck again. I know many of the nurses who just refuse to stick over twice, but when you are headed for the OR they HAVE TO GET A VEIN, if not, then the central line has to be done. They must have those IV fluids going before anything can be done. Since I am always prepared for it, fortunately I am not in the least afraid of needles, and they can stick me, as far as my thinking, as many times as it takes to get the IV started. It is a very good thing needles are not something I am squeamish about or I would be in big trouble! So, this last "temporal artery biopsy" is the latest in a very long line of surgeries and procedures I have tempered as of late. Along with that, which was yet another new surgery/procedure, I have the latest in am extremely large cast of physicians, mainly specialists in several fields. Oddly enough, each time I think "okay this has to be it", suddenly I need yet one more type of specialist, probably some type I did not even know about. I honestly thought I had been through the entire list of all specialists, but guess what, my PCP can find another one, for another symptom I need to see.
You find when you have an illness like Lupus, it can effect each and every part of your body. Whether it is internal organs, skin, brain, blood vessels, your face, your hair, your demeanor, whether you are emotional or not, whether you feel hot or cold, or whether you can sleep or not sleep... the list is endless. So, you also must be cautious about not BLAMING EVERY new thing that suddenly comes on, on the Lupus, or other AI disease. It could be an "offspring" of it, but it also could be something that totally has nothing to do with those illnesses, thus you may need further treatment for an unrelated illness.
For us, another doctor is just a night mare of a situation. I realize anyone who must find a "specialist" or gets referred to one also jumps through all of the hoops associated with that issue. There is just getting an appointment if they are available, take your insurance, and still take new patients. Then there is the particular insurance carrier you have. It also may mean you must have a referral sent by your PCP in order to just get approval and get into a new specialist. But, for someone chronically ill, and that may mean the situation is even more of an urgent nature, thus that means additional information you send in, call about, fax over, get your PCP more involved, try and talk directly to a nurse, and so forth so you can get an earlier appointment, rather than waiting 4 months at times. This usually means gathering up every piece of documentation you have saved (and believe me you learn to GET A COPY and SAVE A COPY of every test, surgery, medications listings, doctors listings, diagnosis' over the years, and so forth... especially tests such as MRI's, CT's, and blood work. Those usually are important when it comes to Lupus, RA and your joints, pain, and other issues that accompany them. I get a copy of everything, I scan it into my computer, make sure I keep the original always, and have the scanned copy so I can print it in the future. This saves you a great deal of headache, for I learned quickly, you usually accumulate lots of paperwork very quickly with visits, tests and surgeries, plus your medication list and list of physicians you see can be daunting also. Thus you are able to get what you need quickly when the situation arises. I have saved myself HOURS and HOURS of headaches, not having to dig through boxes of paperwork when it comes to these things. And I can just about guarantee, that every new physician you see will want as many of those records as you can produce. Now, that does NOT mean he or she will USE them! BUT, I can assure you they will ask for them. So, if you learn the "ropes" and have all of that ready at your very first visit, you can get far ahead when it comes to getting in the door, to the doctor, and possibly avoid having "duplicate" tests done. Now there are those doctors that NO matter HOW RECENT a test has been done, THEY WANT THEIR OWN! Believe me, when you have just had a CR scan 3 months ago, and you must see a new doctor, and they insist they want "their own" people to do the scans again, it is just another crappy mess for you to go through. I have heard doctors tell me, well some scanners show things better than others Well, that makes sense, depending on the age of the machine, etc... BUT if it has been done less than 6 months ago, they probably are going to see the exact same thing. Unless you are injured, or it is blood work that can change quickly, either it is a "money" thing for them, or they are just a little too "overly sure" of themselves, wanting their own stuff done. Needless to say, you can have a huge, or several huge folders on your computer, as well as printed of all kinds of doctors reports, OR reports, Scans, Blood Work, as well as various other types of documentation over the years to keep a record of. If you "wait" until one doctor gets something over to another, you may be waiting forever. You learn very quickly, doctors, along with their staff (that sometimes are just idiots honestly) do not usually get in a rush to fax or send anything to any one, including a doctor, pharmacy, or an order they request for you to have a test. So, it is in your own best interest to get all of those things gathered up yourself, as well as a COMPLETE listing of all of your doctors, tests, surgeries, health conditions, and a list of medications, and what you are allergic to, together. If you are headed for the hospital for a procedure, or for a test, or to a new doctor, my advise is to take all of that along, I can say now at the very least you will need that medication, allergies (if any), and listing of your medical issues. Depending on what or whom you are going for, the listing of other physicians, procedures, and so forth can be helpful thus it may save you hours of filling out new paperwork from memory. For me, if I forget to bring these lists, I will assuredly all of a sudden develop "amnesia" of all of it, as soon as I sit down to fill out paperwork. Also, many of your new doctors have websites. You can go to them, download all of the "new patient" documentation and fill it out ahead of time. That saves valuable time also. Some of them can even be sent back over the internet, but you sure can print it out and get it ready before hand. Also, check if they have a website for things like which insurance they take and any other "new patient" information that may be helpful before you arrive for that first appointment. The only thing I wished they would include, IS THE BEDSIDE MANNER of the staff and physician!!! LOL!!! I laugh, but believe me, I have seen it all, and heard it all. I have some of the best, most caring, patient and understanding physicians, and then I have or have had some that are total jack-asses. You will find out there are some awesome doctors out there are far as their medical knowledge and practice, but their mannerisms when it comes to personality desperately are lacking. There are many other "pointers" I can give to help you be a "better" patient, and get much better care for the most part. These above are just a few. The one thing and I end this particular post with this... EDUCATE YOURSELF! Get online and do as much research as you can. Research your symptoms, your diagnosis (if you already have one), your doctors, the clinics, look for places where patients have left their own experience information about who you are seeing, ask questions also when you are making an appointment. But mostly know as much as you can about your own body, and don't just look at one website and stop. There is a great deal, a whole entire wealth of information on the internet, some very good, and some a bunch of junk. You have to "weigh" out common sense, and what makes sense. If you see the same list of symptoms on the same diagnosis, on 10 websites, then you can be pretty sure, that information is fairly accurate. Especially if it comes from very "reputable" places, such as the Mayo Clinic, The Cleveland Clinic, Research places and non-profits like for instance the Lupus Foundation. They will carry accurate information and it will more than likely be up to date and possibly the latest as far as medications, tests, and things you can ask your own doctor. You will find many doctors that are "GLAD" patients educate themselves. Yet, there are others that just "hate" it. They feel the patient "thinks" they know it all, and that a patient is "believing" everything they see and so on, but for the most part that is not true. People just want to understand more about what is going on with them, and during these times, there are more patients, in fact way too many patients, and definitely not nearly enough doctors. So, you may be able to make better use of what little time we get in office visits, if you have done your own "homework", written down questions, or printed things from online, and have them ready to ask, and get answers that make sense. So, do your homework, whether from the internet, reading a book, or however you are able to get more information, it will benefit you immensely in the future, especially when dealing with a chronic life time illness.