Wednesday, October 31, 2012

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...

Tuesday, October 30, 2012

The 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!!!

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

Monday, October 29, 2012

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

                                         Ramblings of A Seasoned Soul
                                 Brush Strokes of Life through Words

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.....


HERE!!! is the OFFICIAL link to my new book!

Ramblings of a Seasoned Soul - 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...

Sunday, October 28, 2012

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!!!!!

Friday, October 26, 2012

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.

Wednesday, October 24, 2012

"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!!!!!

Tuesday, October 23, 2012

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.

Saturday, October 20, 2012

As "Tis" the Season surrounds us so quickly...Trials, Illnesses, & New Heights

Lots of things going on in all of our worlds now. From the hustle and bustle of what the Fall and Winter Seasons bring, football games, kids back in school and college, thinking about the holidays, which all seem to roll into one another, rather than be separate as the used to be... It seems Halloween, Thanksgiving, Christmas and New Years are now portrayed together at at once in our retail markets. You look around all of the wide array of stores, and there are all of the above holiday "themed" supplies sitting beside one another, or across the isle's from each other. That seems to be the "theme" of our lives now... hurry, hurry, hurry... no time to waste... not a moment too soon... not an hour of rushing but a lifetime of flying through the years, and one morning you wake up... half of your life "over" with, and you wonder where all of those years went to. Your kids are grown, and they have children of their own. Your teenage years, your roaring "twenties", those prosperous 30's, and those "wiser 40's".... all past as you head to that "half century" mark. When you suddenly one day look in the mirror and realize you are 50 years old, Then you also begin two wonder what the hell you have done, why the hell you did what you did, and did not do what you thought you would... why time is so fleeting, and the days seem to rush by much quicker with each year you progress to that "senior" citizen moment. Days seem to be shorter, energy shorter, and often you find yourself in a wonderment, of what if, I had done, this, that or the other... how would my life be different??? Should I have gone to college, or married earlier, or NOT married, or had more children, or skied, or went on all of those splendid trips and adventures I wanted to. Was the money I made worth it??? Did I need 12 new cars and 3 new homes during these past years???
Then you start to dwell on what shall happen now. What will I do from now on? am I "too old" for this, will I survive another 20 or 30 years or more??? Should I now take those trips, or sell my home, move, or go back to college?? Should I learn a new skill, a new hobby, or find a new way to look at my life??? Shall I volunteer to help others? Or be a voice for a certain worthy cause?? thus, you then are wondering about the future, and yet also thinking about what the past was also. You often find that you meet yourself in the middle. You start settling into those "Golden Years", and find they might be even more "Golden" than you ever dreamed. We tend to think life is over by the time we are "50", or "60" or maybe you feel like you may JUST see 100... that century mark!! and beyond!
There are so many changes we go through during certain times during our lives. We begin to realize we are not as "spry" and "young" as we once were. Either our memories are not as good, or we feel more "feeble" and less "steady" on our feet. Maybe we deal with more pain physically, stiff joints, and arthritis setting in. WE sooner or later, and sometimes sooner see that all of that "rough and tough" stuff we put our bodies through in our twenties, come back to slap us hard when we are older.
Although we all go through these feelings, emotions, thoughts, and then the physical aches and pains, almost as if we were again having "growing pains" but a type of growing pain to "get mentally" prepared to accept that you may not be able to do as much, or at least do as much as quickly as you used to. But, for those like myself who have already felt in their early years they had already reached those "older times" of their lives, due to chronic pain and illness, we tend to go through much more of almost a "denial" of aging. We sometimes "fear" being older simply because we have already felt those "aches and pains". We are already suffering health issues, that more often are suffered by older people than we are. If you have dealt very long with chronic pain, then your life has been totally different for a long time. If you suddenly find yourself with Lupus , FM, RA, MS, or other chronic illnesses such as diabetes, Sjogren's, Raynaud's, osteoarthritis, Degenerative Joint and/or Disc disease, and the list goes on, then those fleeting years of back when you were "well" have been gone what seems like forever to eternity.
We tend as those with disabilities due to these illnesses tend to feel more guilt, more trauma, more anger, more anxious.. worrying about how the years coming will be. Will people understand? Or will be be shunned by the ones that are supposed to love us unconditionally??? We all too often live trying our best to hope that those that know us will understand. But, we also live trying to convince ourselves that we are ill, and that we cannot help it. We try rationalizing each and every thing we do, and all of the things we may not be able to do, due to the disease, in all types of different ways. I know for myself just telling someone, "I don't feel well today", probably sounds pretty lame for the just every day person. If they do not have an understanding about the chronic life altering, challenging illnesses and syndromes, there is often no way they can truly get the jest of just how badly we feel on some days. For instance, a person can have a bad couple of nights and not sleep well. Then maybe they also have a rough couple of days along with those nights. Thus, you are going to more than likely feel "lousy", run down and fatigued. Yet, when I feel the "fatigue" of of Lupus coming on, I mean a "bone tired" body dragging, almost unable to function fatigue that just completely knocks you on your ass possibly for days or weeks.Along with the fatigue, a "flare" usually arises. That flare maybe "minor" with a few symptoms. It may only last a few days and be gone, until the next one. OR it could be a major flare, that sends me reeling into low grade fever, the bone tired fatigue, severe joint pain, which could be a few or ALL joints, a rash where mine appears to almost look like "blood blisters" on my arms especially, brain fog, not able to concentrate, also the hallmark "Lupus" Wolf rash on my cheeks and across my nose that appears like I have a sunburn, what I have a "Lupus migraine" that no amount of pain medication can get rid of, only a corticosteroid injection to bring down the inflammation of the vessels in the head, plus many other physically symptoms. Accompanied by the physical symptoms are the mental and emotional symptoms of these illnesses. Guilt, Depression, Fear, as I mentioned the "foggy" brain issues where you can't remember things, or possibly can't even remember a word you were trying to use. Most all of which are "minor" in nature above compared to when it strikes your internal organs. Many suffer from severe heart problems, lung and breathing, issues, kidney "renal" involvement is a huge problem, Lupus and these other AI illnesses also can attack the brain, making it even more complicated as far as thought process, or physically harming brain cells. Other symptoms are thrush in the mouth, horrible mouth ulcers, severely dry and chapped skin, the inability to stand a dramatic weather change, from heat and cold, to high humidity, to the barometric pressure making huge and very quick changes. Eye issues such as very dry eyes, and eye infections can occur. Severe sore throats and swollen lymph nodes effect me with almost every flare. My throat will be so extremely painful, that I use a special mix of medication that my doctors orders for the ulcers, the mouth sores, the sore throat, that can easy some of the discomfort. I have developed other health problems, that now as I look back and my doctors look back, we are in agreement that some of my earlier health issues that are now coming to light, are directly caused from my AI illnesses. Lupus is often an illusive illness, that many doctors do not understand, and they absolutely need to be able to spot this life altering illness by symptoms, X-rays, blood work is a huge one for some, earlier symptoms through life, and the patients education of what is happening by their own research and being in tune with their bodies, can often help to make an accurate diagnosis much earlier in life, where some of the horrible symptoms and damage may have been stopped or slowed down before it effects especially vital organs, and can cause death, especially when the damage is done permanently to organs before an accurate diagnosis can be made. As I continue on my journey, through the ever winding river of my life, through this blog, I hope I entertain you, bring you vital information, give you a reason for your own advocacy, allow you to possibly research and get a doctor that can help you, understand about disability and how to achieve getting it, how living with these autoimmune illnesses can wreck your life, or absolutely change some things for the good. My wish is that I give to you all of the information you need, along with allow you to look into my own trials tribulations, victories, defeats, and all of the "spaces" in between living with chronic pain and illness. May you feel lifted up, sometimes brought down, and most of all relieved to know you are not the only one.

Wednesday, October 17, 2012


I have been waning and waxing on posting anything to do with the political scene or about the upcoming Presidential Election simply because of those views being so very personal and emotional for people. At first, I thought they also really did not belong here, but yes what is going on as far as the election most certainly DOES effect people with chronic illnesses, pain, the disability folks that are involved in this, and others that are not getting the health care coverage or even the health care they need in this nation. We have so many foreign countries that take better care of their own people than we do. Again, greed is the word I use for those who would rather line their own pockets, than pull a little hope out of those pockets for the people that need it the most. For the most part, if you are just at the "poor" level up to the middle working class that seem to pay the most for everything, your health care probably is none, or is very expensive, or probably has high co-pays and deductibles, plus you are lucky if the doctors take it. Boy, talk about a night mare. It it just about like moving Mount Rushmore, turning the heat down on the sun, and parting the Pacific Ocean to get either your insurance company, doctors office, &/or pharmacy to do their jobs!!! Especially when it comes to any of the "Medicare Advantage Plans", which if you are disabled "earlier" in life, you find out very quickly about how little Medicare really pays, and if it is even ALLOWED FOR YOU TO GET A SUPPLEMENT, which as of now it is just about impossible to get a "Medicare supplemental insurance policy" if you are below the age of about 62, possibly higher now in Texas! So, like myself many in Texas, and other states as well are stuck in getting a Medicare "Advantage" Plan, that kind of "takes over the reigns" for processing your claims. They work basically hand in hand with Medicare, but these plans also offer some "perks" of their own, they are MUCH LESS expensive than most supplements out there, which can run around $220.00 or MORE a month, and then they don't really pay much, unless you have lots of medical bills. I know my Mom was paying a HUGE amount monthly on her Medicare Supplement. Because she does not really have any huge health issues, and only takes a very few medications and only sees the doctor about 3 times a year, it was just money thrown away for her to pay that price. They usually never paid a dime, because they had her to meet all of their deductibles, and by that time, they did not a anything, because she does not have enough medical bills to even meet deductibles most years. So, we also switched her to a Medicare Advantage Plan in 2011. So far, if she continues to be in fairly good health, and honestly if she was to get ill, she still would be better off with this plan than any of the supplements for the most part.
So, back to the subject, Medicare, Health Insurance, and Health Care are just three of the MANY issues of this years Presidential Election. I will say right now I am a "President Obama" fan. NOT because he is a Democrat. I really don't care whether an elected official is in the "Red" or "Blue" zone of politics. What I DO CARE ABOUT is how they can run our country, take care of our needs as citizens and humans, and also keep us safe as possible, and hopefully keep us more out of debt, and out of wars which I realize sometimes is just a terrible thing to have to deal with, when it comes to protecting our nation and helping our allies. So, I voted for Obama last year and I am still backing him this year. Don't get me wrong, there are some things I see he could do differently, and some have not been gotten to yet, but this man stepped into a pile of CRAP, the day he walked into that office. He has been trying to mop up mess from at least 10 years BEFORE HE GOT THERE!!! So, "throwing the baby out with the bath water" for me is just not an option!!! The man needs a chance since we are out of one war, and calming down (hopefully) from another, has taken down the bad news bears of Wall Street (which was a freaking ridiculous mess and I cannot believe everyone turned their heads on that one), kept us OUT OF A DEPRESSION, as far as I believe, has gotten RID OF THE MAIN TERRORIST, or one of the hugest ones for sure, and worked his butt off to try and clean up what was screwed up LONG BEFORE he took office!! It would have been simple to walk in with a balance budget on the table, no wars, no Wall Street "agenda" and people stealing our money for their own greedy ways, plus all of the other 1001 issues that were already headed down the tubes!!! I feel if it were not for President Obama, we would be "in a fine mess" as the saying goes. No, we would be in the worst HELLUVA mess, that I feel would have made the Greatest Depression since the last one in the 20's/30's, look like child's play. I truly believe he was our safety net from falling in a hole we would NEVER dig ourselves out of. There was a lot at stake back in the 20/30's era also. But, think about just how much more financial stake, as well as how many more people there are here to take care of, feed, cloth, run stores, shops, manufacturing, all of the things that would probably be bankrupt for good. That isn't including the financial collapse of our entire nation. So, a Depression now, would be even worse than back then in many ways. But, also in that time, most everyone was on a "even" playing field. We had some people that had more than others, but for the most part, everyone farmed, raised most of the own food, bartered in town locally for what they needed, and traded the things they grew and raised for items they could use at home. You put one of these teenagers now out in a cotton field with a hoe in the 100 degree heat, and I wonder how long that would last, without an I-pod, their cell phone, text messaging, and the luxury of their best shoes and name brand clothes. That is another entire subject for another post. But people took care OF ONE ANOTHER. Everyone knew their neighbors. They truly CARED ABOUT EACH OTHER. They had barn raisings and such. If someone was down on their luck the town pulled together to help them. What would happen today if you went to your doctor with a chicken, and some home grown vegetables from your garden in trade for a checkup? Oh Lord!!! Talk about someone being laughed out of the city!!! But, that was how things went. What about a doctor who actually got out in the middle of the night, with his horse and buggy and made a HOUSE CALL to deliver a baby??? Hell they can't even spend 2 minutes in the office with you when you do have an appointment, much less every remotely call you back on a phone, much less ever come to a house!! Why that would be blasphemy according to some!!! I realize things have changed but WHO CHANGED THEM??? US, THE PEOPLE changed everything. We are the ones that have to have the best home, the best car the biggest FlatScreen HD THREE D...and every "D" television... the best designer purses, clothes, shoes for every outfit, kids that think anything less than the latest name brand fashions for school would cause them to be outcasts!!! That is where our world has gone... and we put a man, that has the initiative, the drive the know how, and the want to.... to put our nation back on track... to resolve our tremendous, mind boggling debt, to put people back to work, to FIX our broken down infrastructure, to fix our Medicare and Social Security continued solvency issues, and to make our country once again the one that "Old Glory" Truly stands for...what about WE the people, FOR the people, and BY the people... NOT just the RICH AND WEALTHY but EVERYONE!!!! GREED is a word, a social situation today that stands out everywhere you turn. GREED is one of the main reasons we are in the financial ruins that we are in right now. Greed is those that have more than it all, more than they can ever need, want and use, but they continue to prey on those that don't have it so they can line their pockets with every dime they can get hold of...and for what??? AS the old saying goes' YOU CAN"T take it IT WITH YOU!"
Morality fits right along with greed. The entire nation has gone nuts when we are so "immune" to things that are so immoral that we sit around and allow "home grown" terrorists to KILL innocent people! There is no REASON ANYONE in this country other than Armed Forces or Police that Need AUTOMATIC AK-47'S AND THE LIKE!!! NOT one DEER or BIRD hunter would tell you those weapons are needed to hunt!!! And furthermore... that is in "satire" OVERKILL if you want to "protect" your home and family!!! Get a can of mace, pepper spray, keep a ball bat under your bed, or even a shot gun... there are other items and other ways to protect your home and family besides having a gun or usually guns in your home. Like the song about a "Louisville Slugger" to both "head lights"... well up beside of the head of someone harming you will work also... but we sit around on our hands in fear of saying WE WANT MORALITY ONCE AGAIN! We want our nation back, that is FOR ALL!!! NOT for SOME!!!! We must take a good look around at some of the issues that our children, grandchildren and the generation to come will have to deal with due to our own "nonchalant" form of thinking. So, I have said lots here, that has lots to do with the government, politics, about our Social Security, Medicare, and those people that are now using it, and to come in the future. I have touched upon our broken health care system... and I have said for myself I DO NOT believe that you must be "all" Democrat OR "ALL" Republican... but some feel that is the only way... I am fully backing our current incumbent - President Obama and I intend to do my very best to use the tools I have to help him make this country great once again. If I can give my own voice, to sign petitions, send emails and letters to our elected officials, any and every thing in my own power to do, I intend on doing. I feel that is my duty of being a citizen here. We cannot do it alone. BUT, if we STAND TOGETHER, IN UNITY, NOT DIVIDED, we can once again make AMERICA the very best nation to be proud of in this world,

Tuesday, October 16, 2012

Laugh Now!!!- Drama in the OR yesterday!!

  I had a "temporal artery biopsy" yesterday due to some double vision issues I have been having for about7 months. this is what happened yesterday am in the Operating Room right when I was waking up from surgery!!! This doctor I can attest has the personality of a wall, in fact worse. but, I found out he has a temper like heck also... thus this is the post about my experience coming out of the OR...

Well the most part is over. I had the biopsy yesterday am. All went well but dammit I have a fairly long incision right at my hairline on the right side at my temple.. The worst part is dammit he had to shave a tiny bit of hair off right there and of course you can see that. It happens to be on the side of my head that tends to be thinner as far as my hair goes than the left. Since my hair has grown out, I will be able to cover it up I think but I am still upset that they had to shave it at all. He never told me that, but I already knew due to my own research. I should have the pathology results in 5 days. I have to drive all the way back to his office in Dallas though again this afternoon just for him probably to check this... which it looks fine. I think me going up there is stupid and a waste of time and gas..but he is a real jackass! Speaking of I have to tell all of you what went down in the OR with me in there!!!! First of all, they never let my husband back before I went in. They got me ready, and the nurses missed telling him. So, the anesthesiologist, and the nurse came in, told me that I would be given "twilight" or Prophanol... or whatever and I would not know what was going on during the procedure. Thank goodness. So, they wheeled me in, and he was getting ready to give me the meds, which I felt burn like hell in my arm, and the next thing I know he is waking me up, calling my name... I was awfully groggy but still in the same OR room... well everyone was moving around in there I guess cleaning up for the next case, and my doctor was there also!! He began shouting "Get her out of here"!!!! I means he was hollering to the top his lungs at the OR nurse!!! I think she even tried to come back in and talk to him and he was shouting and cussing to get her the hell out and he never wanted to see her in his OR room again!!! And dammit I really never knew exactly what transpired between the two of them, to cause him to be that horribly upset all the while here I am the patient just waking up after surgery and hearing all of this.. The guy that was my anesthesiologist keep asking me if I was okay, and several of the other staff from the OR standing there, and I was fine just puzzled as to what happened to make him that pissed that he would go off on her like that in front of staff and a patient right there coming out of surgery!!!! It was something else. Everyone was nice and even asked me after they took me to the post-op room if I was okay.... I think he even screamed something about "CALL SECURITY"!!!!! Get them up here!!!!! OMG!!! It is kind of funny but also scary to know he has that kind of temper... I knew he was not very "social" and his bedside manner sucked but damned... I am glad I don't have to work for him.... that would be a nightmare..........anyway that was my excitement, other than I came home with a damned "diaper" looking thing on my head that the middle of the night, I had some kind of dream, and remember jerking it thus he is supposed to take it off today anyway..but I am scared if I don't have it on in the office when I go in he might scream at me also!!!!!:)

Rising to the Occasion for My Readers (that are to come)

I realize that not one person has been "invited" or actually became a reader of my blog as of yet. There are many reasons for that, most of which although it has been "up" online for a rather long while, I have not been about physically for the most part of this past couple of years to think about sitting long enough at my computer to be able to write a blog. I may have been able to write some, here, there and yonder, but I know that readers, just like myself, want to read the latest and greatest. As a reader, you want to know the entire "agenda", not just a few pieces here and there. Thus, my goal was to find out what exactly all was wrong with me, (or so I hoped), then do what I needed to do, to get out of pain, as much as possible, and get as well as much as humanly possible. Although, anyone suffering with chronic pain and/or illness(es), realize that trying to get all of the facts together, then correlate those with all of the specialists, tests, medications, and research on the patients part if they really want to know exactly what is happening with their own bodies, that can take an extremely long time. The good news is we have recently made so many leaps and bounds as far as diagnostic tests, blood work, scans, more information and research to help doctors as well as patients understand the workings of these life altering, often life draining, and definitely life challenging illnesses or syndromes. As you have probably gained from this already, my "medical" issues are many. That includes Lupus, RA, plus degenerative joint and disc disease, as well as a couple of other Autoimmune Illnesses, Sjogren's, Raynaud's, along with other health issues including two heart attacks. The first was at the age of 40, yes you read that right, I did type 40 years old. The 2nd one, that probably could have been avoided if things would have been done differently, was actually 10 years later, at the age of 50. I was already in the hospital, and had been seriously ill with another health issue, and had the second heart attack mainly due to the severe amount of stress put on me with the other very serious ill condition I had been in for about 6 weeks prior.
If what knowledge I have now, I would have had back when I was 35, I may have avoided some of the issues with illness I have been dealt. There are times, and I must say fairly often times, that I get very angry about all of the years I spent at doctor's, countless scans, X-rays, blood work, even hospital visits throughout my life, from the time I was about 21 until I was 47, not one physician had ever indicated that all of the joint issues, the chronic pain issues, the severe migraines that plagued my life enough to cause me to be fired from a job I had been on for over 6 years, and I was terminated lying in my bed at home, ill, with a note from the Emergency Room doctor that I could NOT work for 3 days or so. There were many things in my life that either happened, and others that did not happen, or I did not get to participate in due to illness. But, what exactly was happening to me, no one could say for sure.
Being a woman that was having these types of health issues during the 1990's caused me even more grief when it came to the majority of doctors during those years. Even now, women continue to get things said to them like "Oh, you are just stressed", or "I think it is depression", or maybe you should change jobs, get a new husband, move out of town, do anything differently, BECAUSE YOU are the problem. It is just "all in your head". Oddly, men very rarely hear those words, "Oh, it is all in your head!" For the most part, men can walk into a brand new doctors office, with just about any type of symptom known to man, and I would bet on the average, those men are taken very seriously 98% of the time. You just do not hear a "man" or "woman" doctor for that matter, telling a male patient, they are stressed, depressed, and making up how they feel!!! Now, I am not putting down the notion that STRESS is a huge part of our health problems especially in the United States. With the "large picture" to "do more, be more, give more, work more, make more, have more.... more, more, more... both men and women, as well as many of our kids are very stressed out! The rapidly fast paced society we live in is enough to make even the most passive person be ready to pull their hair out by the end of some of our busy days, that seem to be 58 hours long, and still not enough time to do it all. So, both depression and anxiety are two health issues that do need to be taken very seriously. BUT, those two illnesses cannot be used as "scapegoats" for laziness on our health care professionals part to do the tests that are needed, no MORE but NO LESS! A 5 minute conversation, that is usually one sided on the doctors part, does not usually mean a very accurate diagnosis for a chronic long term life altering disease. These are not easy to diagnose, and they all have symptoms that can be similar to other illnesses. But, with the right doctor, that truly hears and listens to his patients, that does take time to make the right decisions as far as blood work, any scans or X-rays that may need to be done, or even a biopsy or certain type of surgery maybe needed in ordered to find out the entire issue. It also may take several physicians that specialize in different fields to discover, determine, decide, and come to conclusions together as to what is going on with a patient, especially when it comes to these chronic illnesses, that are often rare, and for the most part, not a great deal known about them... It also takes a patient that is willing to get right into the middle of the whole thing, look up all of the information they can, online, in books, at the library, through magazine articles, and then also willing to ask all of the questions that need to in order to get their own answers to suit them. For me, more often than not, no matter what is going on with me, let's just say as of lately, I began about 7 months ago having sudden "double vision". At first I did not give it much thought. I do not sleep very well with all of my health problems, so I thought it could be from lack of sleep. I went along about a month, and it was not resolving itself, so I did some of my own research as to the possibilities, finding out it could be a number of things. So, I went to my regular opthamologist, who does a vision check on me annually due to the Plaquenil I take for the Lupus. The medication can cause retinal detachment, and even though rarely, I still must have an annual check to make sure all is well on that side. I realized several years back my vision was beginning to get much worse, as far as reading and close up vision, but with my age getting around 50, that is not all that unusual. I had a thorough exam, and was put in a different type of glasses with "prisms" in them. All of their tests did not reveal anything wrong, but the prisms are used to help with those that have double vision issues. It took me literally weeks to get used to those glasses! I would get sick to my stomach if I went it to a large store, with lots of open space, before I got used to them. They just caused everything to be thrown off, from how it looked when I looked at the ground, bent over, read, or even watched television. It was totally crazy, but I did get the glasses, and they did help me to see better. At that time, my regular eye specialist wanted to refer me to yet another specialist, and in fact one I had never heard of up until now. They wanted me to see a "Neuro-Opthamalogist". I knew when I heard that title, first of all it was a highly specialized field. Secondly I just knew the possibility of finding one close that also took my insurance was going to be like pulling teeth! So, at that time, I was already facing some type of surgery (we just did not know exactly what kind yet) so I put the "double vision" in the back of my mind, wore the new glasses, then went on to have a 4 level cervical spinal disc replacement and fusion, which was done this past June. I had been living in a living hell with severe shoulder blade pain, pain radiating from the top of my arm, down and around to my thumb. I was not able to have much use of my right hand, and of course that is my dominant one, and it made life miserable. I had already undergone a had already had a complete "reverse shoulder replacement" in June of 2011, that was supposed to correct all of the weakness, pain, and give me back the use of my right arm. Yet, I was not able to even lift my right arm enough to put deodorant on under it, or shave under it. There was no way I could reach behind my back.The worst was when I had to stop the rehab therapy I had been doing because the pain was just too bad.  Then it was another several months of trying to figure out what was causing the right shoulder blade pain, the a pain running down my arm to my thumb, the weakness, and basically giving me an arm that was totally useless to anyone. Once again, I was dealing with a doctor, (and folks this is 2012) that absolutely despises any of his patients trying to "self educate" themselves on what is happening with their own bodies. He just hated the fact I went online, knew a great deal about that special type of shoulder replacement, he hated the fact that I knew about anything.Then when the shoulder implant did NOT in fact "fix" of all my shoulder pain. After 6 months of doing very well after that surgery, suddenly I began to have pain again down into my shoulder blade. It was a severe "burning sensation" that later ran down my right outer arm down and around to my inner wrist and into my thumb. Before that the majority of the shoulder pain and weakness had improved dramatically, and it had been coming along very well with me rehabing it at home on my own. One day 6 months after the surgery, I had went to put gas in my Mom's car (yes she cannot put gas in her own car - never learned how to) I went to twist the cap on to make sure it was locked, and I felt something like a "snap" in my right arm, in between my elbow and shoulder. It almost gave the impressions of a rubber band when you stretch it and let go. I even almost "heard" the noise. At first, of course I was very upset that I had done something to that surgical implant, like pull it away from the bone etc. But, at that time the pain I felt was more like a tight squeezing feeling just in my arm where that "pop" had taken place. I was definitely concerned about it, but I knew I was going back soon for another check up on it, so I thought I would talk to my doctor about it then. Well, within 2 days, my shoulder began to hurt. All of that burning in the blade itself was there, but my entire arm felt sore, it hurt almost like "bone pain" in the shoulder, and that sensation of burning ran down to my thumb. We went through X-rays that showed that everything was in place as it should be, as far as the shoulder implant and hardware in there appeared to be normal. Due to my "pain pump" (which I will talk about in another post) I am not allowed to have any MRI's... ever... thus I went and had a CT scan along with a myelogram of my neck. I have had neck issues for the majority of my life, due to a 4 wheeler accident that I had when I was about 26. But, in the past 4 years or so I have had a great deal of degeneration of several of my discs. The scan did show some of the damage, but the doctor was still not really satisfied with just those scans and X-rays. So, I went through a nerve conduction study (NCS) and an electromyogram (EMG) which revealed that there was significant nerve damage. Yet, even with that evidence and what the CT had shown, it still was not exactly apparent if my CERVICAL SPINE was the cause of my latest shoulder issues. I knew I had neck problems. I had 2 other MIR's from 2006 and 2007 that showed the degeneration of several discs at C 3,4,5... then in 2007 it was those along with C-6 that also was in with the entire bunch. Even though there had been no bone spurs and so forth showing, the evidence of the specifics of symptoms and pain I had was sufficient enough for my Orthopedic Surgeon to feel like the problem was definitely nerve impingement coming from the herniations from C3 through C7 actually, with evidence of two discs entirely needing to be "replaced" (more "foreign" parts to add to in my body), and probably fusion of all 4 of them together. So, after feeling just a year before like I was "through" with surgeries for hopefully a long while, I was not only facing yet another major surgery, but one I had NOT wanted to ever even have to think about, and that was any type of spinal surgery. We have so many horror stories, and all of us have heard them about "failed back surgery", (they even have a diagnosis of "failed back surgery", just like a diagnosis of arthritis, or a torn knee cartilage), that I had always said I would NEVER no matter WHAT EVER have any type of surgery on my neck or lower back. Even though I do know several people that have had lumbar or cervical surgery and came out just fine, we usually have many more just the opposite. From just talking to someone in the local market to what we hear on television, and all of the massive amounts of information on the internet, we are inudated with more negative than positive results. So, this one was extremely difficult for me. I argued with myself over the subject for a couple of weeks. Yet, when I weighed all of the facts together, which #1 was I could no longer live with the pain, #2 the spine issues were only going to get worse, never better. Without going through with the procedure now, would mean I still would face it shortly. So, the option of putting it off, was kind of took off the table. Thank goodness I did listen to my doctor, to Jim, and moreover to myself. Now I am happy that I made the decision to go ahead and have the cervical disc replacement and fusion done, or honestly I would not be here typing this out. I got to the point I was not able to stand the pain in my shoulder blade as I tried to type. I would not be here 5 minutes even just checking email, and that intense burning began. then it may last hours or even a day or more, when it got started. Everything seemed to aggravate it, whether I just had the arm by my side walking or I was trying to use it to clean or stir something in the kitchen. so, even though it was a great deal to go through, not being able to drive for 6 weeks, well actually 8 for me due to having the "soft" bone where the screws were that hold the "hardware" in my cervical spine. I also have osteoporosis, which is extremely bad, due to y "genetic" background for the first part, and for the second due to having to be on Prednisone, even a small dose, has also caused the issues of this illness to be even worse. I was totally shocked when I had a bone density test about 3 years ago. Never did it dawn on me I would have any issues with that kind of problem. But the test came back actually "severe" as it can. So, I went on medication for it right away that I take weekly in a pill form. "Fosamax" is the brand name for the medication. they have just came up with a generic brand, which saves my insurance and myself some money for sure. But, it does not even really "repair" the brittle bones, but it does make some of it harder so that a fall, or something like that may save me from a horrible break in my pelvis, hip, wrist etc, But, of course NOT falling at all is the best. Yet, with all of the issues from RA to Lupus, to just have all of the implants can cause you to be more apt to taking a fall without being extremely careful. Anyway, I endured the 8 weeks of that hard collar, not being able to drive or bend over, and other things that I was so used to doing I could not do. One thing that was a positive light from the surgery well before I began to see results from it, was the fact I REALLY needed to WALK and QUIT SMOKING. I had already basically quit smoking anyway. I am what they call a "weekend smoker". I am able to take a puff or two a day, and nit have to smoke anymore than that. the walking, well, I already have been an avid exerciser, and ride my inside exercise bike for 45 minutes to an hour daily, without miss for the most part. But, walking was something highly suggested on all of the sites that talked about healing from the cervical surgery. Since I could not drive to my regular walking park,  one morning I started walking up and down our long driveway. I am fortunate enough that we do have a fairly long driveway, that with about 35 to 45 minutes gives me quite a workout. I started doing that just after the surgery and have never stopped. I religiously walk, no matter weather, unless it is extremely cold or rainy, I walk, which is in addition to continuing the daily bike ride also. So, I get my exercise in daily, which I am quite proud of. I look forward to the sounds of "Matchbox 20" in my ear, and that "trip to anywhere" I want to go for a little while. I maybe silent and absorbed into thoughts or I could be singing, or more than that talking to myself about one think or the other going on at that time. I realize often that even though I feel so weak, and fearful, I am forever more strong especially mentally and emotionally with every medical thing that comes into my life that I have to endure...I close this one and a new subject comes soon... I will begin to publish "daily" pieces even though I may not finish them at that moment also... but complete them in a day and then begin another. I want to keep this interesting for YOU the reader, as well as try to enlighten you on the aspects of life with a Chronic Illness.

Thursday, October 11, 2012

Beginning Once Again...

As I begin this journey, or rather I say continue this journey, I am embarking upon a new "raging river" per se'. I have posted, blogged, written on Face Book, had my own MSN and Yahoo sites and groups, running the entire gamut of the latest and greatest in the realms of communicating with other "like-minded individuals". Yet, it is NOT the "latest and greatest" that brings me to do this new challenge. It is a desire to reach out to you, the audience, with my own very personal powers of what has ailed me off and on for many years. Years before I even knew what "chronic illness and pain" were...definitely well before the majority of us knew one thing about Lupus, Rheumatoid Arthritis, Degenerative Joint and Disc Disease, Fibromyalgia, Chronic Fatigue Syndrome and even MS (Multiple Sclerosis) was an illness we really new very little about. I can recall the very first time I ever heard of anyone that I knew having Lupus. She was back then a girl I had went to high school with, and she was a couple of grades ahead of me. She married a local "home town" boy, and they were making life, with home and family. When I was in my mid twenties, possibly a bit older, I had heard about "Kim" having the chronic, incurable disease of Lupus. There was so little known about this disease at that time, other than there was NO CURE for it, and basically it was a death sentence back then. Even the world of Medical Professionals had really not figured out what was going on, other than the body was actually attacking its own self, from skin, to internal organs, heart, brain, kidneys, lungs, and more.... there were no real tests to find out for sure if Lupus was a correct "diagnosis". At that time the very distinctive symptoms are what gave doctors a clue as to if you had this disease since some of the are often vague, and others very specific to the Lupus illness. The "Wolf's mask" or what now is known as a "Mylar Rash" is probably the most distinctive symptom of Lupus. IT has a very definite look, feel, and way it comes on, so that in itself is a very good hint into whether Lupus is the correct diagnosis or not. Then there are the much more vague symptoms, which are more "ongoing flu like" in nature. Extreme fatigue, other unexplained rashes on the hands, feet, legs, low grade fever that lingers on with the other symptoms, a severe "migraine type" headache, aching joints and muscles, usually several of them over the body, often an almost "allergic reaction" to being in the sun causing the facial rash to be much worse, changes in weight and appetite (loss), problems with hair falling out, swollen lymph nodes under in the throat, inflammation of blood vessels (Vasculitis), swelling of hands and/or feet, Raynaud's phenomenon which is caused when vessels in the fingers and toes seem to not get enough oxygen to the small  causing then to turn blue, and almost feel as if they are frost bitten, very cold and tingling or burning. Anemia can be another symptoms of Lupus also.

Thus, as you can see, there are a variety of symptoms that could be associated with any number of illnesses, some possibly serious, and others a mild 24 hour flu. The "markings" of the "Mask" happens to be one of the most prevalent of signs of Lupus. Since there are two types of Lupus, one that involves strictly the skin, (Cutaneous Lupus) and the other that can effect everything from skin to internal organs which is called "SLE" (Systemic lupus erythematosus), both can have this particular hallmark feature of the disease. Lupus is a chronic illness that at this time has no cure. Over the past 2 years although, there has been extensive research yielding new medications that are on the market to help Lupus Patients. I will get into more about these new medications in a later blog post.