Either "Feast" or "Famine"?

We all go through stage in our lives that we feel overwhelmed with LIFE! During the holidays, at the start of a new school year, a new job, the birth of a child, kids in sports, and the list of things that make life busy go on and on.
Then, as we grow older, kids grow up, they move out, we possibly work a part time job, or retire, or as myself become too ill to have a job, thus things you would think slow down. Yet, that is so far from the truth. No, we don't have kids in sports, new jobs, new school years, or thing such as that,, but we still have the "bus-i-ness" of life.
With chronic illness that part of business seems to be quite overwhelming in other ways. For me, my "list" of daily or weekly things to do seems longer and longer, while my energy, or lack thereof, may I say, seem to make it even more impossible to finish. You tend to move into doctors visits, making sure your medications are filled properly, insurance claims are taken care of, and your own personal things are handled. We still have bills to pay, we still have groceries to buy, we still have cars to inspect and/or register, taxes to pay, etc. and so forth. So, even if you are growing older, or are dealing with chronic pain and illness, life in any form remains busy in one way or the other.

Also, there comes a time in your life that things that were important, are not so much anymore. Yet, now other things are much more important, and need to be kept up with. When we are young, running around with errands, kids, jobs, and so forth, all too often we feel invincible. So, we may not eat properly, or exercise right. Maybe we don't take medications are we should, take care to guard against the sun, and feel like those things are not that critical. Yet, as you grow into those upper forties, and then into the 50's; NO we are NOT OLD by any means, BUT we feel the years behind us settling into our bones, and how it is effecting us now. We maybe slower than we were, and have to make sure we give ourselves more time for a project for instance. It takes me twice as long to get dressed up as it used to for instance. Two reasons, of course age just slows you down, you also have this "thing" about trying to remain youthful, thus things like skin creams, taking care of your skin, your hair, all of that is much more important than when you were younger. You put on sun block, you use special lotions and creams on your face and skin. You may have to color your hair, or have it cut a special way so it is easier to manage. For me, I have waited now for 15 plus years and got a wild hair to let my hair grow out. Which was really stupid in a way. It takes me so much longer to do anything with it. It requires a great deal more management than when it was short, and believe me, I am truly thinking about having it all chopped off again in order to make my life a little easier. IF my hair is short, it cuts 20 or 30 minutes out of getting dressed time. With it longer, it has to be conditioned more, brushed more, dried, rolled, sprayed and so forth. IF I were not so busy with that, I could have my makeup on, and be out the door much quicker. As it is now, half the time it takes so long to do my hair, by the time it is finished, I am saying to heck with the makeup, I am just running to the market, which I used to NEVER DO. But, you get to this point you know you are either going to have to let something go one way or the other. From pain to energy loss, or lack of energy, you feel like you need to put forth what you have in the things that are really important, for instance GOING to the store! IF you have spent an extra 30 or more getting dressed, then that is just more time you could have have doing something else more important or that you wanted to do.
I find that I am guilt of feeling as if I "procrastinate" more now. Used to, when my mind was made up to do something, it got done. Now, I may have several things going at once, yet I can only put forth effort to one at a time. For instance, if I HAVE to get out and run errands, and go to the store, then I have to put my sights on that, and get that done first. Then, if I get home, and after putting things away, I am still up for it, I can do a few things in the house, or outside that need to be done, or that I want to mess with. Used to something like re-painting my kitchen cabinets would be no big deal. Now, I want to think it is not that daunting of a task, but in reality, with my arms so weak, and this shoulder like it is after being replaced, that is much more of an ordeal than I am trying to make it. Which sucks! None of us want to get to the point we feel we can't do something. Whatever it is, little or big. Used to I was your 'Ultimate DO-IT-YOUR-SELFER."  If it needed to be done, I could and would manage to do it myself in my home. From installing a new water heater, to handing a ceiling fan,  I did it. If I wanted something done, I was the first one out there working on it. I loved being able to do just about anything at the house. It saved money, lots of it at times, it saved time, because I did it when I wanted it done, and I was always proud of redoing my walls, completely remodeling my kitchen, to hanging ceiling fans in every room of my home. Now, many of those things I just have had to admit I can't do. No longer can I hold anything up long enough, to put a ceiling fan in. My arms just won't let me, not this "new shoulder". I will never again have that much strength and endurance to allow myself to do that, and it sucks. I can't get out and hoe, rake, and make an entire flower bed on my own. Hell, I can't even mow my own lawn anymore, and that used to be one thing I loved. That was mowing my lawn. But, there is no way my arms, wrists and hands will let me be shaken around, Besides I just once again l have lost lots of my strength and mobility due to the shoulder replacement, and my neck surgery. It is not worth it to be injured again; although, I admit I miss it terribly. Yard work was always my own "zen". Thus that space has now been "open and raw" where I must find other things I CAN do and feel useful. So, I do my own "indoor" gardening. I have my home full of indoor plants, that require a great deal of care also. So, they help take the "disappointment" of not being able to work outside away, and make me feel worthwhile. I know houseplants are wonderful for the air, environment, plus they make a home beautiful. Then in the Spring and Summer, I set them on my front porch, so they are outside a little, and I tend to them there, thus I can be out for a while, with sunscreen on.
What my point is with this post, is that we move from one realm of life and being busy in one way, thus as we grow older, our lives are still busy, but we slow down and they remain "hectic" in other ways. I have overheard others feel that their elderly parents or relatives are not "useful" as they once were. I have also heard that about those like myself that have chronic illnesses. All of that is just untrue! Each of us serve a special purpose here, and just because others don't acknowledge it, you should always feel it in your own heart. but, that is just not as easy as it seems. When your life is totally flipped upside down, by things such as a chronic illness, or a severe accident, it is very difficult to try and erase what you know, or at least put that memory behind somewhat and begin all over again. It is always much easier to "think" about doing something differently than it is to actually do it.
When it comes to a huge change in your life, making those changes effect everything about you. From the way your feel, you think, from your actions, your thoughts, the way you do things at home or in public, everything changes. You also think about all kinds of things that before you had a chronic illness or before the chronic pain set in, that before never entered your mind. You feel as if you must "plan" for the worst and hope for the best. Even if you are just making a day long trip and will be home by late evening, what you used to now be concerned about, now all changes into different concerns. It is not just about turning off the coffee pot or leaving a light on for the puppies. You must think about your pain or illness, and what medications you may need until you get home. Whether it pain medication of sorts, or other medication, you may have a routine with those meds you must adhere to. Maybe it is what you wear, if you have issues with pain in your legs and feet, or taking shoes to change into or out of when you get to where you are going. It maybe that you need to eat at a certain time, make sure you drink a certain amount of water, tea, etc. For some, even a 2 hour ride means a stop along the way. You can't handle two straight hours in the car without a stop and break to stretch. Sometimes it is things like making sure your have your medication list, your illness list, or like myself I have a medical device, which means I CANNOT have an MRI. OF course you don't expect to "need" one before you get home, but in the case of an accident, you must have something with you that says that you cannot have an MRI, or at least you have something special that they must take into consideration. Some medications require being kept cold. Now usually for a day trip, it is not necessary to worry about that. But, if you are going to be gone for a couple of days, that maybe important, thus you have to make arrangements to keep your medication cold if that is the case. I won't go into all of the details about a long car vacation, etc. That gets way beyond just a few hours in a car. but, just that in itself gives you an idea of other things we must consider before we leave the house. I have a device that controls my implanted pain pump. I have to take that with me to use every twelve hours. Even on a day trip, I will need to use it usually before we get home, at least once. That of course is on top of your usual items of how to dress, what jewelry to wear, do you have everything you need and so forth.

Since this is a long post, that actually began yesterday, I am going to add to it, rather than make a new post this morning. On Facebook, I had written this morning about feeling, "out in left field" I guess you could say. It seems that no matter what kind of thing life brings to me, I never quite feel I have done, said, etc... what life wants me to. I can't seem to feel "fulfilled" with my own self. Even though either it is overwhelm and chaos, or almost bored to tears with the same old thing, I never quite feel I get "life" right. Other people, all around can try and convince me otherwise, but like anyone else, I must feel that within my own self in order to really KNOW that I have done what I think I am here for. I kind of feel as if I have wandered through life, haphazardly, one way, then the other, never really following that true path I was put here to go on. All of us I absolutely think in my soul, have a very solid purpose for being here.For many of us, it is easy" to fall into the pattern of where life has been cut out on the dotted lines for us. for others, and I see it especially in those like myself that once "thought" that pattern was completed and being sewn together, then illness or pain strike, and it seems our "seams" take an entirely different direction within the fibers of life we have sewn together.
Much like a quilt, and I can think of life in that way. Many quilts are very stringent in their patterns. You have a certain amount of this particular piece you need, or pieces in certain colors. They must be sewn together in a certain way or the quilt will never look like it did when you first either saw it in a magazine or online. Or if you had pictured it in your mind one way, thought about and began it; then all of a sudden you bought other material, changed your stitching to a different type of stitch and a different color of thread, and put all of the "new" material and stitches into the "original" that you began. It may be beautiful, but I can guarantee that as beautiful as it s, it surely won't appear to be anything like what you first pictured out. Colors have changed, patterns have changed, stitches are different, and thread is totally new. Thus so is life very much the same when you all of a sudden embark upon a "maiden" voyage of life setting out with one strict way to go, and you take a "short cut", or decide to go around the long way, it will not be as you thought it was. Both of these, the quilt pattern, and your maiden voyage in life can be changed, be enriched, switched, changed, moved, made more difficult, and may not look or feel a thing as it did when you first began it many years before.
We all know that we must deal with changes in life. Whether it is an illness, or a marriage, divorce, birth of a child, buying a new home, selling a home, whatever that change may be, at first it is very different from how you pictured it to be.
But, when you are dealing with a great deal of the "unknown" even more so do those things change in such dramatic ways. What seemed so menial of a change, can turn into a huge ordeal. Yet, we learn to deal with them.
The entire point of it all, is to try your best to "roll" with the changes. Rather than fight them, or try to hold back again that current, you are sometimes far better to allow the waves of life to just flow over you, and often you will see what appeared to be so terrible, could turn out to be even better than what we had planned in the first place.
It remains a very difficult thing to have your entire life uprooted. Like the people in West TX from at one moment, they are eating dinner, to the next, their homes are entirely destroyed. Or those that lost their lives in Boston. Innocently minding their business, running a marathon, and the next they are on the ground, with shrapnel in them, just within a breath's space all of their life they knew, had changed. From the families that lost their children to a senseless shooting, to those that fired on people sitting and watching a movie in a theater, all within the time it takes to blink your eyes, life can forevermore be changed. It takes a drastic toll on those involved, as well as those around. Even us as "strangers" feel the torn tug on their hearts and ours, and the devastation that will be there from the one moment those bullets left those guns to the moment many of those parents take their last breath on this Earth, their lives will never be the same. How could you not question "What might have been?"

Thus so is the way chronic illness and pain takes its toll on your life and those around you. Forevermore, life is never the same.....





This is a post from Facebook on 4/24/2013 that kind of fits into this entire blog post also....

I am so "discombobulated" with life, I am not sure what the hell I want, don't want, want to do, don't want to do, and that goes on and on. It seems when things are a screwed up mess, that we have 50 things going at once, we are running here, there and yonder, I am stressed to the max, all I wish, is that crap would settle back down into a whatever "normal" routine as it should be. Then when things FINALLY settle a little, and I can "see" through the dust of life, then I feel almost bored with the damned everyday, same old routine, day after day, morning after morning, then I see that my life is just one foot in front of the other, I wake up, I deal with the pain, I drink my coffee, feed the dogs, change their paper, come here, and look at the news, the weather, then FB, and email.. and so forth. Nothing really ever changes in my life, I just get "veered" off the same path some for awhile, then it all picks back up into the vicarious cycle that I live in. I live through others I think. I live through my daughter, and all the excitement in her life, or through friends and the things they do, that I don't. I live through everyone else's life that seem a hell of a lot more interesting than mine. Of course when once again the severe pain sets in, or I am not well again, or I have a dozen doctor appointments, etc... then I will wish for things to be BACK to that "normal" boring life I had just weeks before...LOL!!! As the Steve Earle song goes "I Ain't Never Satisfied" and that is the truth for me... it seems whatever, wherever, I never quite feel "satisfied" with my own self. Not my "life" I guess I can say I feel fortunate in many ways in that respect but more about who "I am", what I should do in life, who should I be?, those types of things. I try to find my "way", and right now I feel I am almost at a crossroads, a place where I need to do something, go a different path, make a turn, get out of the middle of the damned road, and find where I am meant to be. And I don't mean in a "physical" state of where I should be? But, in my own inner state of mind and soul... I feel I have either lost some of that, or never really found it...

How Much More Can Our Entire World's People Handle?

Lord, where do I begin? From right here in my own "back yard", to the events overseas in not just the Asian part of the world, but throughout many other part of the foreign nations, there is utter chaos. If you PAUSE, but only for a brief few moments of your precious time (and that is not facetious, our time, we truly should consider precious), and truly think about every horrid event that has happened since December 2012. IF I have that date correct, it would be specifically the 14th of December, which in the small town of Newton, CT, it was a morning that began as any other morning for the small kids and their families, anticipating the Christmas Holidays. I am sure most of those Elementary kids had their minds on getting out for the holidays, having their Christmas parties, exchanging gifts, Santa, and all that Christmas represented up until that fateful morning.Then, a "human" if you can call him human, took all of that away in a matter of moments. Within a few earth shattering minutes, the loud and reckless hail of bullets forevermore changed the lives of so many. HE took many, many lived, and totally turned other lives into something that many shall never be able to have back. The sense of security and innocence of kids, the holidays, those that will never grow up to become all of the incredible people they were to be. Their families forever also torn and crushed. Hearts broken, and they must at times be full of anger, resentment, and pure almost a hatred for not maybe the man, but HIS actions! No one may ever know why. They can guess, but he took that to his own destiny, locked away until we see the coming of Angels once again.
That was enough there to knock us all off of our feet in this nation. Yet, that was only the beginning of a very long string of events that are shaping, molding, wrecking. tearing apart, leaving broken up in pieces and changed until we take our last breath. We have the events here in TX, just a short drive away from my home town, in Kaufman TX that seemed almost too surreal. No one would ever suspect during the middle of a weekday morning, in a small town like TX, for an Assistant DA or anyone for that matter to be literally gunned down right in front of the court house! Talk about being "terrified"! Then the judge in Colorado killed in cold blood standing in his front door way. Then before you know it, again in Kaufman the head DA AD his WIFE are shot in cold blood at their own home, during broad daylight. Talk about someone either totally nuts, or just too stupidly brave for their own good, which was great for our law enforcement to now not just have caught one, the shooter, but his wife and another guy, all three involved in those slaughters of human life!
What is so horribly sad about these events, plus those that follow, is we are almost "immune" to these acts of violence and terror. We have became almost complacent about our news being filled with rage, horror, guns, violence acts of neighbor against neighbor, with NO remorse. Then most of these psychotic people are so damned much of cowards they take the easy road out and either kill themselves, or fix it where they go down as some kind of martyr's in a "hail of bullets from law enforcement". Or these that "blow" themselves up for the sake of some "Higher Power" they worship. They are no martyr's but a bunch of chickens, who have no remorse, no regard for human life, not once ounce of "decency" or morality running in their veins. I suspect many of the have "ice water" rather than blood that pulses through their bodies. I cannot fathom a flesh and blood human performing some of the most radically nightmare types of actions we have ever known as if it was child's play on a play ground. It is pure insanity. These people have more than a screw loose, more than some psychotic break, more than anger or rage. There has to be something to describe them over and above any kind of description we have had up until now. Words such as deranged, lunatic, nuts, crazy, insane, mad, demented, certifiable and the list goes on and on, none seem "strong" enough to describe what these "people" are.

From there we also see not only the things going on all around us on our home land, but across the ocean from us stands another crack pot, nut case, that has the possibly capability of not just maiming or harming, but literally killing hundreds of thousands of people, including us! This young man, someone who you would think just by looking at him, his wife and him together, talking about basketball, was some Korean person, also going about his life. But, boy is that ever far from what is true! This man has to possibly be as close to a devil as their is. Brain washed as those people are, and the hatred they have for most of the other part of this world, is hard to grasp. Yet, one man, around 20 years old honestly holds the "purse" strings to whether we live or die. Whether we are blown up with something that the bomb itself is bad enough, but the radiation would be the end all to the rest of this world. How can one person feel they can justify having that much POWER? Any "normal" everyday sane person certainly does not. Most of us do not even like to kill a "bug", and often times let things go like even snakes etc, due to the fact, first of all we are not killers, and 2nd of all, they are here for a reason, just as all of us. Which comes to the subject that all of us are asking, How could "God" allow these people to do these things or even exist? Well, all is written and it is destiny. As horrid as they are, their particular "purpose" is being fulfilled just as we have been told for many hundreds of years.
We don't understand it, but all will come to light, at the end of times. I am NO prophet! I am NO predictionist. BUT, in my OWN OPINION, the "beginning" of the end has began, and we see the signs all around us.
Not only in the ways above, but in the greed, the lack of empathy, the lack of care about our neighbors, friends, those around us. There is no remorse, but only a growing violent state everywhere you turn. Whether it be on the television, radio, in a game, in a newspaper, online, in your town, around the globe, nations and people are rising up against one another, for MONEY, GREED and POWER! Those are the three EVILS of these times.
Now we go onto "Mother Nature". Of course we play a huge role in "her" actions also. From droughts to floods, to record amounts of snow, severity of storms, more violent weather conditions, the ruination of our crops, our water, soil, and air. Our polar ice caps melting at a phenomenal rate. Our entire bee population dying out, and the scientists are not sure why, but they do know what shall happen if we lose all of our bees. They are one of the most important parts of our ecological system. Without them this world as we know it shall not be able to exist. Look at the wild fires taking thousands and thousands of acres of land, while the ice caps melt causing land that was never covered in Ocean now to be completely under. The number of horrific thunderstorms, producing more tornado's, more violent that ever before, dumping HUGE amounts of rain in one part of our nation, only to have severe drought conditions where no crops will grow, no animals can be sustained, and causing us to lose many of our precious insects, animals, and so forth that again help sustain life as we know it. The hurricane's force and the length of these just get more huge by the season. City after city totally destroyed by the strength of these massive storm systems, that cause snow, rain, hail, flooding, run off of land, changing the very way our beaches look forever, sink holes, avalanches, mud slides, and the sinking of places into the ground due to the way we have either "feast" or "famine" when it comes to rain and dry seasons. Our seasons are nothing as they were even 20 years ago. You often cannot tell the difference between Spring, Summer, Fall or Winter. I know right here this past Winter basically was non-existent. Which means lots of bad things for us. Not enough "cold" weather leaving all of the "bad" bugs to be way over and above normal to control. The trees, grass, bushes and such are all confused, blooming out either too soon, or not really even "resting" for the Winter season. We went from a "fall like feeling to almost a spring time" from November through April 2012-2013! It is crazy. We get up to put long handle pants on only to change into shorts by the afternoon, and by early morning it is in the 30's only to be 50 degrees hotter by that afternoon!!! The massive change have a drastic effect on our bodies also. We have interrupted sleep patterns, and an entire host of issues, physical, mental and emotional that the slow, but progressive changes in our weather patterns and seasons continue to cause us. From severe allergies, that you rarely used to hear of, to all types of other health issues, much of those could point back to what changes are happening around the globe.
Then, we come to this unimaginable explosion in West, TX. The date April 17th, that shall be a day that not one soul in that town of about 2,600 will ever forget. Lives once again changed forever. Plus all of the lives in the surrounding places of TX, and across the US, that shall forever be touched in some way by this test of what we as humans and Americans are made of. One moment you are sitting with your family at the dinner table or settling in to watch your favorite TV series, and the next your home is gone from around you! Unless you have experienced that, I really think we just cannot grasp the magnitude of what that entails. As much as we can try to empathize and come to the aid of all of those souls, and also give much, homage to those that braved going in to help, not knowing they would never come out. The community here in my own home town is also drastically effected due to us being kind of "kindred" spirits due to both being huge Czech communities. We both have our HUGE annual festivals, our Polka Festival at the end of May, and they have "West Feast". Thus I am sure there maybe those here in my home town that have loved ones directly effected by this nightmare. My prayer is that they find the cause, and also I can't help but wonder if some body "set" that first fire. That is state of thought, that I am sure many have had. It to me is almost natural to think that way, after all of the terrible things people have done to others lately, thus anything could happen. It could be someone out for "vengeance" . We certainly hope not, but anything lately is possible. Also TODAY April 19th, 2013  marks the 20th anniversary of the "Compound" of David Karesh, which is extremely close to where the explosion at this fertilizer plant took place. Oddly enough, that compound went up in a ball of flames, but much worse, due to the very nature of all that person thought "he" stood for. It is sad till this day, that many innocent people, including children lost their lives to such a senseless man.
I am not "leaving out" Boston and the bombs at all. Yes, I reversed it a little. but, since that situation is just another one that is difficult to fathom, and it also ongoing this morning as I write this, I wanted to put in further down here, in my post. How any two (or if there are more) "normal" two looking young men can decide to put two bombs, MEANT TO MAIM AND KILL people like that anywhere, much less a huge event such as the Boston Marathon is beyond my comprehension! Again, Greed, power, stupidity, hate, evil, insanity??? What the HELL drives someone to such a horrendous act against their own people? I am just stunned until even now as to why? And I don't care why they say they did, NOTHING, I mean nothing could make me think any of these horrid, senseless, devil like, evil acts, NONE of them have ANY justification!!!!! NOT ONE SOUL CAN JUSTIFY WHY THEY HARM AN INNOCENT PERSON! And when you do it in the name of your "god", then that is even worse.
There are of course all kinds of opinions, speculations, rumors and such flying around about all of these. There are also many more things that have taken place lately that also are crazy. The open fire in the movie Theatre. Shootings on College Campuses. Guns brought to schools or places they don't belong. The MINUTE by MINUTE KILLING of innocent lives in CHICAGO, and on  many streets here in our nation, and across this world, all senseless, all uncalled for.
WE need a wake up call, and we have gotten several very strong ones as of late. I HOPE, we are ALL SHAKEN UP, not just a little BUT A GREAT DEAL IN THOUGHT about all of these horrible acts, plus many more going on daily. Abuse, and every other thing that is just screwed up in our world. People, we need to rise up, and put an END to this violence.
You see many good deeds through all of these things. Those that are giving up their lives to help others. Running into a bomb zone, fire zones, shielding someone else with their own bodies against gun fire, and all of the ways people come together to rebuild homes, cities, towns and lives. To those I commend each of you. It does show we DO have some reason BEAUTIFUL PEOPLE in our country! May we all find a place to fully feel all of the nature of events good and bad. May we find peace inside, that can shine on the outside. May we also look to the heavens and pray for all of those hurting, and for all of our world, that our Higher Powered shall help dry the tears.

PAIN!! The ONE thing I HATE to have to write about is PAIN!

PAIN! such a short 4-letter word (and when I say four letter, it may as well as any and all of the Curse words - from sh*), f*c^, damn, hell, crap, and all of the other ones you can possible think to be "bad".
This morning I cannot even begin to try and describe the MASSIVE, and I mean MASSIVE amount and intense PAIN I am in! I awoke at 4 am, with a couple of things in mind! Blow my head off, Eat some rat poison, jump off the house, I am too chicken to cut my wrists or take pills, or any thing that would STOP THE DAMNED PAIN! It is insanity at its finest! I knew three days ago, "it" was coming. By "it", I mean BAD weather, thunderstorms, high humidity, and the works. I also know that the pain I was already in was going to be at least as strong, if not stronger than the winds of the thunderstorm, intense as the black clouds that rolled in, huge as gold ball sized hail stones or larger that could fall, and then that "rolling" thunder, as you look up into the sky, never wanting to see the "funnel" of hell coming. Well, I have that FUNNEL right now. The dreaded Debris funnel, that consumes it all. Well, this PAIN is that funnel cloud at a 5 on the scale. The "scale" they use to describe pain, from 1 (which is the least) to a 10 (which is the worst), at times with "chronic, gnawing, relentless, burning, moving, pulsing, never leaving pain is not enough to describe it. For an attack of "acute pain" it is perfect. It tells the doctors just what they need. BUT, after someone has already almost grown "accustomed" to an "everyday" type of excruciating type of feeling in your body, that 10 often seems like not nearly enough for the accurate description of the woeful, agonizing, torture we go through.What makes this even worse, is many, just like myself, will do ANYTHING, try everything, have listened to others, and tried sometimes even "home" remedies, everything over the counter, natural treatments, ridiculous treatments, as desperate as you get, you will stand on your head (if you could) on your roof, twist 4 times, call upon the little green men in the sky, and then hop on the next bus to Timbuktu if you thought it would just FREAKING END!
Pain, yes is a STATE OF MIND, along with the physical realms. "Acute" pain, even though just as horrid as chronic as far as hurting, like kidney stones, gallbladder attack, a broken leg, and so forth, they HURT like hell! BUT, you know that after it is "fixed" the pain will eventually cease. It will go away, and you are rid of it. So, it is a great deal easier to bear, when the cross is temporary. But, when you know every day of your life, you face the possibility of that dragon once again surrounding you, it becomes a cross that is almost impossible to bear at times. It is like the difference of dragging a one pound weight up and down your driveway, versus dragging 400 pounds of weight up and down your driveway. It gets to where you wonder if you can even face it one more time. You know, it maybe gone for a day, an hour, a month, months, even years people have a reprieve from these types of illnesses that cause the night terrors of pain. Yet, even if it has been a month, you absolutely know it will BE BACK!
This is where it plays on your mind. IT is almost identical to "abuse". Once your have suffered at the hands of someone that abuses you, you always are looking over your shoulder, your mind knowing it could happen at any time. Well pain is just that. It is like a stalker in the day, the night, it does not care if you are at a party, doing chores, having fun with your family, or driving off on vacation. Pain does not choose to wait until after the holidays, or wait until you are not at work or on a project due right then. It has no boundaries when it comes to when, why, how, what, day, night, summer, spring, fall or winter. It cares nothing about anything else that goes on in your life. It just springs upon you like a cheetah would its prey. So, when those that possibly cannot comprehend "our pain" and how bad it is, unless they have experienced being "held captive" by stalkers, or abused, it would be difficult to really give them the entire picture of what life is like. I often hear, but "you look good"... well, as I just explained this week in fact, when it finally gets to the place, I cannot take it any longer, sometimes that is when, even though I would rather crawl under the bed and stay, sometimes I just MAKE MYSELF, get somewhat dressed, fix my hair and shower, take a very SMALL list to one of the pharmacies etc that have a good sale and I have coupons, and I literally make myself go. It hurts, it is all I can do to keep from sitting down in the middle of Wal-Greens and screaming, crying, begging, anything... if it would just go the hell away!!!! As I told her, when it sometimes is really getting me so far down, I go out, I TRY TO BE PLEASANT, I try to carry on a little conversation (thus it is great in a small town to go to your local pharmacy, where lots of them know you, and you are able to chit-chat a little). They all know my situation. They all know that I am trying my very best to put the best face forward I can, and in some tiny way, it is a therapy at times. It does help to take my mind off the pain, even if only from the time I get out of the car, go into the store, shop, check out, and then want to cry when I go to my car, for a brief amount of time, I almost felt "normal". So, when you KNOW someone around you that is dealing with a chronic illness/pain situation, just because they are out at the market purchasing their groceries, certainly does not mean they are well, or they maybe hurting like hell, but like myself, they will do anything to just take my mind off of it, if only 10 minutes.
Thus, these past days have been those for me. Yes, I went out for a brief time with my Mom yesterday. She needed a couple of things from Wally-World and  needed my quilt batting, thus we went. I felt like hell, but I MADE myself go out there and get out of the house for a little while. I wanted to get some material cut for a new quilt top, but I just did not have the tenacity to find someone first to cut it, then wait while the lady that cuts it there takes her dear old sweet time cutting a 1/2 yard of like 10 or 12 different materials. Thus, I got my batting, we picked up the couple of small things Mom needed, and by then I as ready to come home. So, just like this morning, which was torture that I cannot explain due to that the thunderstorms are rolling through, Thus the temperatures dropped about 25 degrees in a matter of an hour, and the humidity is out the roof, and it is pouring rain, and thundering, lightening, and just generally awful BUT, we need the rain! So, for that I shall not gripe.
Yet, it is reeking havoc with my muscles and joints! Every joint on me, even the ones that are REPLACED!; yes, I did say my "artificial" joints HURT! It is no different than someone who loses a leg, etc. You have that pain, even with the limb gone. It is true, and it does happen to us with knee and other joint replacements. They hurt sometimes as badly as they did before surgery, when the weather decides to really act up. So, from my toes, to my ankles, up my legs, through both arms down to my wrists, and fingers, then shoulders, up to even my head, of course, I have a migraine no doubt. Everything possible just hurts. It burns, it aches, it throbs, any way you want to describe it, yes, that is how painful it is.
So often I try to make this blog about "everything else" but pain and illness since I fear people will get bored to death with the same old crap. I can hear it echoing in my brain right now, "Gosh, all she does is gripe, bitch, and moan about pain" and then she is always talking about everything wrong, how many doctors she has been through, medications, surgeries, etc and so forth YET, that is EXACTLY what I wanted the entire thing to be about, or let's say, for the most part, my blog, my book, all of that is to give others out there, that are facing so many of the exact same things I am, or do, a "light", some hope, a little faith, some knowledge, ways to help you and others, ways to survive the ordeal of chronic pain and illness. It is a FULL TIME JOB BEING CHRONICALLY ILL! That is no joke. Anyone that has many issues that they must see doctors for and take medications, or have tests knows exactly what I mean. IF you are not AT the doctors, you are making appointments, going for tests, blood work, fighting to get the insurance to pay or get the doctors to file it right with the insurance. Or you have to get prescriptions filled, and wait for the pharmacy if you need refills and an okay from your doctor. Or again you are on the phone with the insurance company trying to get them to pay. If not, then you are possibly needing a new type of doctor due to a new symptom, so you must go through all of the entangled web of paperwork, and dealing with a new set of people in the business office, the nurses, and the doctor. Or possibly you are dealing with having a surgery, getting well from one, or thinking about why you feel so bad, and wondering if there is something new wrong. Then you maybe waiting on test results, that you have called about 5 times, and you still have no answer. That list goes on and on also. It is truly a mesh of a ball of thread all waded up, and you spend your time when you feel like it untangling all the knots that are in it.
Now, that does not include your "usual" life affairs, home, family, job if you have one, kids, school, cleaning. So, you are doing a double take for the most part, because there is always something that needs to be done.

I am not sure exactly what I wanted to relay over to you this morning. My first thing was the extremely painful time I am having, and then it all of the ways to try and deal with it. Then what it takes at times just to deal with daily living.

None of us have it easy for the most part, and many of us deal with so many other things on a totally different level, all the while. we are sick... daily....
you are able to chit-chat a little). They all know my situation. They all know that I am trying my very best to put the best face forward I can, and in some tiny way, it is a therapy at times. It does help to take my mind off the pain, even if only from the time I get out of the car, go into the store, shop, check out, and then want to cry when I go to my car, for a brief amount of time, I almost felt "normal". So, when you KNOW someone around you that is dealing with a chronic illness/pain situation, just because they are out at the market purchasing their groceries, certainly does not mean they are well, or they maybe hurting like hell, but like myself, they will do anything to just take my mind off of it, if only 10 minutes.
Thus, these past days have been those for me. Yes, I went out for a brief time with my Mom yesterday. She needed a couple of things from Wally-World and  needed my quilt batting, thus we went.

Reaching Beyond The Realms of Symptoms to Try and Help Your Own Self with your illness...

Well, yesterday after waiting 11 days, I FINALLY get a phone call about my abnormal "myoglobin" blood work. The call at first was, this is "she" from the doctors office. The "nurse" said to call and tell you yes the test has NOT changed, it is still high and not normal. Then there was silence! I am like okay, now WHAT?
I guess all they were to do is answer my question, and leave me hanging? So, I got put on hold for at least 7 or 8 minutes, maybe more. She comes back finally with well the doctor said to "stop your muscle relaxer" (which I need), it "might" cause this, but more than likely it is your MTX and of course you cannot stop that one. So, I am like okay, well I am in horrid pain, especially in my legs, and something needs to be looked into. I want an appointment. We had been talking while I was on hold, and decided this was crap, I need to go into SEE him in PERSON! She comes back on trying to say to "redo" blood work, yet again in 3 weeks, THEN come in the following WEEK to see the doctor! I am like NO! I ALREADY have those appointments! Hell, it so happened those are regular appointments for followups from my 6 month visits! As I told her, I am IN PAIN, and I feel this needs to be dealt with SOONER than 4 weeks... she messed around finally said well he can see you on May 1st. Well, hell that is still two weeks away, but better than 4! It is like what I said below on a Facebook post, we are patients with "chronic issues of pain and illness". We tend to "KNOW" our own bodies, symptoms etc, and are somewhat able to pinpoint often times what is wrong just because we have the time to research our own stuff. Rather than as a doctor who has hundreds of different illnesses to know, we usually deal with a few, thus of course it makes sense we may have a better knowledge of what is wrong, not all the time, but often times we either already know or at least understand what they tell us. IF I, as often I do, "Google" my "symptoms", I come up with something the almost same each time. Well of course than can happen due to frequently illnesses with chronic pain, autoimmune illnesses etc have many of the same symptoms etc. But, when you "dig" deeper into all of this, and can add your tests results etc.. we tend to find a picture of what is happening. NO I am NOT a doctor! Never said I was, BUT I think for the most part, WE do understand better at times. WE have doctors that get "bent out of shape" if we give the impression we know about our illness. Of course I have to say, I also have some great doctors who truly appreciate the fact I do look things up, and I know about my own issues. It helps them to help me. Yet, I of course want to weigh in what they have to say. I might research something, and get one impression, yet that doctor has either seen something in his practice or knows something due to his schooling, that I may not could have known. Thus of course, they are more proficient, I expect them to be. I certainly would not want to see a physician that never could give me a correct diagnosis and treat me. IF I had to tell them every time what was wrong, I don't feel that would be the correct physician for me. So, we have our incredible doctors, our insane doctors (met a couple of those), the "luke warm" ones that sit on the fence with stuff, those that are test happy, those that are just quacks, and those that are exceptional in all ways. They communicate, the know their stuff, they are willing to LISTEN TO THEIR PATIENT, they do not get offended if a patient does their own research, and there are a few that should not be even in practice. When you have chronic health issues, you tend to go through all of them. I always pray that we find the best, the cream of the crop, and for the most part I have.
What I do find though, is that I may have 5 that are incredible! Then have one that is just not at all what he or she should be. That ONE that is a screw up, can give you hard feelings against the others. I find that if one of my doctors has been a jerk, then I am leery about the others when I go see them.
So, after hearing all of that over the phone yesterday, I sit here this morning, my arms, hands, feet and ankles burning like I am on fire, and I think to myself, must I put up with this another 2 weeks? Do I go back to my pain doctor, who honestly up until yesterday when I found out the blood work is STILL abnormal, I was ready to have the pain doctor do surgery and check this pump. I had resolved myself late last week to face maybe it is the pump or the catheter from it. Maybe I should let him put me to sleep, and take a good look at them. It seems so ridiculous and almost impossible to have so much "supposed pain control" methods, yet still be climbing the walls in pain! It does not make sense. What I also have come to find out, different types of pain, require different types of pain management. Some pain responds to the regular method of pain medications. Others take medications that reduce inflammation. Some, which is what I think I have developed is nerve pain (either nerve- neuropathy) or it IS MUSCLE degrading, where my muscles are inflamed and I have a "Myopathic" type of situation. Which, can be extremely painful. I just began to read on those, more extensively over the past two days. One of the FOUR NEUROLOGISTS that I saw, told me his first thoughts about the severe leg pain, the double vision, and all of the new symptoms etc, with the tests indicated a myopathy called, Myasthenia Gravis, which is an AUTOIMMUNE ILLNESS by the way. But, the symptoms "fit" several of these, thus the "hunt" for what is correct is on for me. I refuse to lie down and NOT find out what is wrong! Somehow, somewhere, myself and one of the doctors have to fix this. I refuse to allow this horrid mess of pain and illness ruin the rest of my life!

A Pleasant and Prosperous Weekend around My Home

I can say that I actually had a very good weekend, got lots done (although I wanted to accomplish more), the weather was beautiful, got some things over at Mom's also fixed for her (curtain rod brackets, etc. that needed to be replaced, smoke alarm batteries and so forth), also got my own pillows washed and dried, decided on trying to get our guy that does our stuff at the house that we can't DIY on (like finishing laying floors in the kitchen, hooking lights up in the bath etc) added up costs, materials etc.), got some of my plants cleaned up and out on the front porch, did get some work done on my 2nd book, my quilt is coming along so nicely! I have all of the "hearts" appliqued on now, and I am doing all of the fancy stitching around them! I am so proud of it. I also got some inspiration to try making some "healthier" home made pizza's that turned out terrific! We liked the one we made even better than any of the grease soaked take out or frozen ones around! IT was all fresh veggies, and chicken breast with garlic, fresh colored bell peppers, purple onion, mushrooms, & I used low fat Mozzarella blended (the Italian cheeses blended and shredded) cheese, marinara sauce, and I did use the Pillsbury roll out crust from the dairy section. I am going to make my own next time, and try doing it with wheat flour or even try something like soy, rice or another substance that is flour like, but healthier. We also put some yellow salad pepper rings on it and at the very last, had a fresh tomato we had cut up, put on for about 2 more minutes and allowed it to just warm up. It was awesome, easy, NO oil, NO added salt, we did not OVER due the cheese, and the crust was our only real (not as healthy) ingredient we used! It was easy, and fun. And talk about delicious. We had taken a chicken breast off the bone, cut it up into small pieces, put it in a non-stick skillet with a teaspoon of canola oil, and used 2 of the Mrs. Dash's. I love the "spicy" one, and she has one that is Herbs and Garlic. Then of course we must have the fresh black pepper. Then we put the mushrooms in after the chicken was done, and saute' them just a minute or two before putting them on the pizza! WE already have thought ahead for another one this week. I have lots of the fresh peppers etc left and have to get those used or they will ruin. We are going to try our hand at one that we used to get in Seattle. It has more of a "white sauce" on it than red, with the chicken and they put artichokes on theirs. Now I am not a fan of them, BUT on that pizza they were delicious. So, we are going to see if we can reproduce it. I am STILL IN horrible PAIN! I dealt with it all weekend long. So, still I did not get to do as much as I really wanted. I need my flowerbed cleaned out, and a few things in the yard done for spring, but me and the hoe just could not meet this weekend. It really hurts me that I can't work in the yard more. I LOVE yard work! But, between the sun and Lupus, and all of the painful muscles, nerves and joints, I can only do so much, and certain things. I felt like even though it was not nearly all my list had on it, at least I was able to feel like I really made some head way on things I have been wanting to do, but either have been tied up at the doctors, or tests, or just hurting TOO badly to do them. I pray the weather (even though we are expecting another one of those damned storms later this week, where the temps go from 85 degrees to 39 overnight dammit!), so that will again put my body in shock, I pray I can also find the hell out what is wrong. I did not hear back last week from my doctor on the important blood work for this abnormal Myoglobin in my blood stream! It has been well over a week since they did the test and it should have been here either Thursday or Friday last week! I am getting a bit put out with all of them. His office is really not good I think due to him not being able to keep employees! As soon as you get used to one, they are gone and someone you do not recognize is there. It really hurts the patients in many ways... and the doctors office. Anyway, I wish everyone a very good week! Take care of you and yours, Rhia

Trying to Do So Many things that your Physical Limitations Make Impossible

I posted this below this morning on Facebook. But, I did not go into just how rotten you can feel about yourself, when you must face the fact that you are no longer able to do some things that you would love to do in your life. Chronic Pain and Illness changes everything about life. From the way you dress, look, feel, what you do, don't do, how you do it, when, why, where.... you name it, being in this kind of pain, or dealing with many illnesses, some of which are Lupus, RA, FM. CFS/ME, Osteoarthritis, MS, other autoimmune disorders, all kinds of chronic pain from DDD and DJD, of which joints and your back, just will not tolerate many things you once enjoyed. You cannot help but NOT want to think about how you are not able to do, this, that or the other. IT is a slap in the face quite frankly. Well, as I thought about all of the DIY projects I used to be able to do, and loved doing them, it brought on emotions of all kinds. Sad, Mad, Angry, Depressing, Unbelieving, fearful, and disappointed just to name a few. Thus, even though my "head" wants to think we are able to complete all of these projects around the house, my physical body knows, I am certainly not able to do many, many of those things now. It sucks. It sucks to get older, but I don't want the other for sure, not right now. So, we must get someone else to handle those things we can't do now, then enjoy and go with the flow, to love the painting and decorating we can do when the other things are finished... thus the post for right now it all about life, and trying to life it to the fullest, with illnesses and pain that think otherwise.... 


Even though I felt at first I did not get much accomplished this week, I really did. FINALLY, not having to be at a doctors office, taking some damned medical test etc... for an entire week paid off. I got to do lots of things at home that I have been wanting to work on, from more on my book, to getting quite a bit done on the new quilt top. It is really coming along well. Plus got 99 percent of my grocery shopping out of the way for the month, some things around the house done that I have not been able to, and put a list together of hopefully finishing up a few things in 4 rooms in our home. We still have some work to do in our kitchen, laundry room, bathroom, and then the music room needs paint etc. Of course it is to the point physically lots of it we are having to admit, we can no longer handle. Used to I could lay carpets, paint, put up ceiling fans and so forth. I was the DIY Queen! But, with all of the health problems, there is just lots that either I can't do at all, or things I will be able to do, will take me a lot longer, just because of limited motion, pain, and hell I am just getting old! Age has a way of reminding you, when it takes 4 days to do something that used to take a day to do! Anyway, I stood in the kitchen at 3 am yesterday morning, LOL, going over the "finishing" of those rooms. The kitchen needs a floor, along with the laundry room and bath. We desperately need new flooring in all of them. But our dreams of laying tile etc.. have been squashed, due to expense, time, and lack of being able to. Thus we are going to have a guy that is a wiz at just about everything as far as a contractor to help. We decided to go with linoleum instead. We will pick out something nice, but rather than go for the expense stuff, this will be easier for me to keep clean, and so forth. Once it is laid, that should be it for our life time. Then we need a vent-a-hood put up, and I am going to with Jim's help sand down and redo our paint on the cabinets. We did not get to really get the old paint off of them when we bought the house. We were rushing to just get moved in and they had to be painted. So, now after almost 7 years they are peeling terribly due to the old layers underneath. Then I saw a "pre-cut" cabinet top that just fits right in after taking off the old one. They have some nice ones that are reasonable, and mine is UGLY AND OLD! So, we will get our friend to install that. The bathroom, which was our hugest "pet project", we did a great deal of the work on. We literally knocked out a wall, moved the toliet and sink, made enough room for my "big honkin shower/tub/sauna" that I love but is a pain in the butt to clean. Jim got most of the texturing done, we have all of the rest of the lights, mirror, most lights and the bath fan are up, they just need to be fastened in completely and wired. Then of course also flooring. So, again, we had some other expectations we wanted to do, especially wanted to do something looking like marble on the flooring, but alas, it will have to be "marble look linoleum". We just can't afford the expense of the supplies or labor, plus with that tub as it is, it would be a nightmare to even do. So, we could do the finish painting etc, but the rest of it, we also would have to have the guy do. Then we need flooring in the laundry room. Other than that, it is mainly done. I want a storm door back there also. Then our music room has also been one of our future "pet" projects. It is a 2nd bedroom, but of course we so rarely have any guests, plus the house is so tiny, we have to use it for other things, thus it is kind of a music/hobby and if need be guest room. We have really not done much to it. We have the carpet already, and we have lots of ideas on how to decorate it. We have thought of everything from making it look like an old fashioned soda fountain shop look, with pink and black walls etc... to fixing it with collections of things like glass ware, bumper stickers, post cards, and even thought about making the wall behind the drums appear as if it had the "acoustics" type of wall behind them. Also, we intend on putting a little bit of a platform in that corner to put the drums on. So, that room is really more of a matter of paint, and have that carpet put down, and how we want to decorate it. So, sounds like a lot and partially is. The floors of course being put down are our biggest item. Then finishing up that bathroom, and hanging the vent-a-hood (it will have to be one of the "professional" looking ones that just hang right out of the ceiling. We have no cabinets over the stove, thus it needs to be that kind. Of course those are more expensive, but it was one of the things I really did want in the house when we first bought it. We just put it off and done so much of the other things first, and most of this is just "finishing" up stuff we are not just able to do, or have not had the time, or better yet, usually the money. Anyway, that was my entire hour "thought" process on Friday am! But, thinking about getting those things finished up, with a little touch up painting on our baseboards etc around the house, and finishing up the out side painting.. would mean almost a new looking home again! Okay, enough... already... I wish all of you a good weekend... I have lots more to do, but after all I did this week.. I maybe resting part of it. There is always tomorrow... or I hope there will be many of them in my future.

Where Potentially My Plans Lie about the Next 2 Books...

Working some on the book this week. Thank Goodness. Still going a little slower than I wanted, but with all of the unexpected issues with doctors appointments, and new symptoms, that required testing and so forth, I just have not been either at home, or have felt like doing much with it. I am determined to try my best to have it ready to go to publish by the end of May. Right now, I have about 31 new poems, but the addition is "Prose" which were not in my 1st publication. So, there will be a much different type of writing in the 2nd book coming out hopefully by the end of May, first part of June. Still Titled, Tattered Musings, Reflections Through The Looking Glass Of Wisdom, it shall take on a entire different feeling from most of the love poetry of the 1st book. My plans are to still finish writing my 3rd book. I hope to be able to have it ready for publication the very early part of 2014. My aim was for around Feb. 2014, around my birthday. But, of course life sometimes has other ideas that we are not aware of. So, I am trying to not lock myself down on the 3rd one. It takes on my entire story, from stem to stern as the saying goes. Lots of depth of my own life in it, of course since it will be a story, but all based on my life experiences, with Chronic Illness, Pain, the depths of Abuse I took from my Ex, and other earlier realms of some darkness that happened when I was fairly young. Those things I feel play into what my life continues to evolve into. I want to give others a chance to see no matter what kind of darkness surrounds you, there is always a chance to shine. Yet, life also deems things you are not either ready for, or gives you limes, and you wanted cherry soda. Thus plans definitely can change. If things had been exactly as I thought when I was about 15, I would be a famous writer, a nurse, have a terrific education, be extremely healthy, and also have the love and support that I do through my spouse, family and friends. So, much I do have that I expected, along with much I did not expect, but has happened. I choose to deal with it, even though there are days, the choices seem slim to none in the good range. Take care... and remember, there is always a new adventure, a new turn in the road, another winding bin in the river, and the tribulations of life certainly do work to move us, mold us, shape us, change us, and make us, who we are... which is always good, even when we think it is pretty rotten....

"Rumours"... Destiny, Insanity, & All that Want to Harm Us...

As I got up to COLD weather this morning (crazy to believe a little over 24 hours ago it was 80 degrees here!!), this feeling of almost "fear" eerily crept in and overtook even the cold. I find it almost not fathomable to believe after the intense situation over in N. Korea, we as a nation seem to be "too calm".  Awaking and coming to read the news, I fully expected there to be more widespread talk of this insane "leader" of a "tribe" of brainwashed people, that for 60 years never laid down their weapons and called for peace, between the North and the South. My Dad fought in the Korean War, and we are still there, even after Dad is long gone, now facing even a worse situation than ever with them. Is this "talk of nuclear war" rhetoric, just talk? We have listened to it for many years. Through 3 generations, all of them have had their own list of threats towards our nation, their neighbors, etc. Up until now, I feel we always may have been a little "nervous" as we should be, anytime the mention of "nuclear war" comes up. But, this time to me, all of this "talk" is very different than the talk before. This person, that seems to be not only "crazy", but leads the line of someone that is totally psychotic, has an entire country hating us, for things that are not true. I have come to see that what they have been brow beaten to believe is all "propaganda", lies, and a form of brainwashing from the time children are born. Those people literally have no idea about what our country is truly about, and they believe we are the ones that are trouble makers, and are willing to cause them harm for no reason. In this day and age of communication throughout the entire world, from the internet, phones, news media, and you name it, he has been able to totally block out everything else happening outside of their own locked lives. It is difficult for me to fathom, that they are not allowed to "see" but exactly what that one man want them to see, hear and live. Even down to believing that we live in a country, where it is freezing all the time, and we are all starving due to freezing weather. They have been shown video's as if we are all standing in "soup lines" daily, waiting on one warm meal. Some of the things I read about on this nut, how can one person have that much control over a huge group of people? Are they that totally scared of him? Anyway, I got up thinking their maybe word of them firing off a missile or missiles. The warnings seem "imminent". But, are we to be frightened? Are we to think he does have the capacity to fire a rocket, that could reach Austin TX? and totally destroy our nation in other places as well? Hell, even if he can reach Guam, or Japan, or South Korea, that is enough to call for an all out, full scale, WW III. I know, we are bombarded right now, with the "rumors" of war. We are seeing more and more media talk about the "fulfillment" of the prophecies. Of people rising up against their own, neighbors, allies, friends. Of the total destruction of morality, of the way those can walk into a school and kill innocent children, or abuse their own kids with sex, and more. The drugs, the guns, the immorality, the drastic changes in weather, in the Sun, in the plagues of illness, drought, pests, famine, hunger, the way we are 80 degrees one day, and in a few hours 35 degrees. Our ice caps are melting, our oceans are dying. We are using up our resources quicker than they can be found. Our mutation of viruses, that have no medication to kill them. From the flu, to new strains of TB, we may have answers to one illness, but just turn and look all around you at the suffering going on today. How many millions of us suffer, needless, endless pain and illness daily? How many of us are suffering from broken homes, lost jobs, a country that the rich have taken their riches, and left those that have their "backs" to lose everything that they have worked for. Our government will not listen to what we, the people that after all elected them, and pay their salaries have to say, or what we want. Many of our "religious" people, those that are supposed to "lead" in the Lord's way, are abusing their powers in every horrid, unfathomable way. Not many care about their own neighbor, hell many do not even know who their neighbor is. Kids now know more about guns, war, sex, violence, and all of the "bad", by the time they get our of elementary school, than I did by the time I was 30! I realize that we hear many "rumors" of doomsday, etc. Yet, we also, if you are Christian, understand, that all that is happening, is the events leading up to the "Grand Finale". We know not the day, the moment, when, where or how exactly, but we do know, or should believe that it is fact, and once again, due to our own injustice leave this Earth (which at times seems like Hell anyway) to move onto paradise. All, my own opinion. I do not expect anyone to agree or not... yet, I do hope in your own ways of the mind and heart, you do think about just how things have led up to the rampage of horror we have almost grown accustomed to in this world now, which is sad.

Maybe I am the one insane... Rhia

Answer to New Massive Pain in the First "Square" We looked at? Back to it I think...

Morning All... Well for me it may be back to square one on the massive new pain issues. After all I have been through for months now, over the past two days, the pain is so bad, once again I am now thinking this pain pump is not doing something correctly. I have once again trying to survive this gnawing, burning pain, much of which is in my legs and feet, but I am also having pain all over my body, even the joints that I have had surgery on. I have noticed even my arms and legs feel, "weak", as if they are almost like rubber at times. I felt at the very beginning of this in January, it was all due to the "flu". From there I was totally convinced the pain pump had stopped, or done something to make the medication not flow all the time or correctly. We changed the medication in the pump, there have been no "warnings" from the pump itself so far, but my body is certainly warning me something is wrong. When I had the pump put in, in late 2010, it was just a matter of a few weeks of medication "titration" that I was a different person. Of course nothing will "cure" any kind of chronic pain 100 percent. I do not think that is even the way anyone with any type of pain issue should feel, unless it is acute pain, such as a tooth ache, broken bone, etc... something temporary, that can be fixed, and heal. With Chronic pain, there are so MANY CAUSES, so many things that can effect it, from weather, to what you do or do not do, stress, and the list goes on and on. Nerve pain and RA pain... the pain of FM, CFS, and so forth, they are all never completely gone, but lots out there can lessen them to the place that you are able to "deal" and live in enough relief mode to have a half way normal life. But, as with myself, all too often it takes years, and many doctors, many tests, and doing the same thing over and over again, giving the same information, trying 100 different medications, alternative therapies, and you name it... before you find just the thing that works for you. I went from not even having to take an oral "break through" pill after the pump was correctly dosing my meds, to now even strong pain medication orally, along with whatever this pump is doing or not doing, is not giving me relief enough. I am "sequestered" (seems like the proper word) to pain, even worse than it was before. It is insanity. I have been though enough tests again and doctors for a small army. EMG's, NCS, blood work, a artery biopsy, (they have not done a muscle biopsy yet), more CT scans, 4, yes I said 4 NEUROLOGISTS, my pain specialist, my regular doctor, and I have lost count of just how many times I have seen them, including my Rheumatologist, and had tests ran. I have "other" issues, like new "nerve pain" stuff, from what the EMG shows, it seems there is a possibility my RA medication may not be doing its job as it should, and I have an issue with some abnormal blood work, that leads to muscle destruction, which can cause severe pain, yet at this moment we are not even sure why it is going on. They took me off my "statin", because they are known "rarely" to cause this anomaly, but after I came off of it, even the last test was still positive for something that should not be there. I had another test ran last Friday, but do not have results yet. I guess I am going to have to ask again myself what the results are. I am still in severe pain, and something it just plain wrong.
I began researching my pain pump again this morning. Their web site is full of great information, and can be a terrific help when it comes to these incredible machines. And there are times they do "fail".. either from the machine part (it is a microprocessor of course, and then the catheter can fail, by kinking, pulling loose, eroding etc... not something that happens often, but all do happen and sometimes the only warning is like myself, sudden new pain, that does not really make sense.
Life is just not fair at times. For some, life is just not fair and can be rotten more than others also. I question my "actions" in life, trying to figure out why I feel I am being "punished". Have I lived in such a horrid way, that this is my "cross" to bear? To live in horrible, almost inexplicable pain, and can't find answers, or reasons, or some fix that does not go away? It is a burden I have carried off and on through out my entire life. It seems to wax and wane, almost as the rivers, mountains, seas, and moon. Coming and going, ebbing and flowing. In between I have beautiful glimpses of life without suffering. Those moments I cherish. I hope to have some today, yet I am already suffering, and trying to ignore it. The realms of our bodies can be a blessing or a curse... thus mine tends to be cursed more than blessed.....

Rhia

Lots of things "resolved", others to pop up, still baffled by my issues with severe pain in my legs & some other joints...

Well, I will say the weekend was pleasant. I got a great deal done, plus got to rest also. I began work on a new quilt (FINALLY), I have been wanting to begin piecing together now for at least a year, possibly more. Between surgery, illness, and all of the other stuff life "chunks" at us, I am just now finding time to start on it. This week for a CHANGE, I "Hopefully" have no doctors visits (like I said I hope), and have completed several things that have been outstanding, as far as around the house, paperwork and so forth. I needed a document completed, that I thought would be an "easy" thing to get done. Turns out I ran into issues with one of my doctor's office managers. He was a real jerk honestly, which is nothing new. But, the entire situation that has been building now for awhile (I am not the only one that does not appreciate his derogatory ways), thus it in a way got settled last week. I am hoping it has been understood between that office, and myself. I hate to have to "fight" for everything when it comes to medical things. It if is not a prescription, it is an appointment, or the insurance company, or the pharmacy, or the incompetancy of someone, and lack of caring about people, and their own job. But, I can say between a prescription that I had to go to "bat" on, to an outstanding insurance claim on my Mom, that I finally had to write a long, detailed letter on and send it to a physician that has a stake in this surgical center, to finally getting "hopefully" a phone call stating my deep freeze ((it has now been over a dozen phone calls, emails & over 12 months of mess) to get this deep freeze that is just not sealing right, replaced. I added it up last night. If the company and I am going to mention them, "Haier" would have just "replaced" it at first, rather than try to fix something that had a flaw from the very first at the factory, they could have saved themselves well over 800.00 or MORE in time, parts, labor, phone calls and head aches. Now they still have to bring us a new one, and pick this piece of crap up, after all of their loss. It is insanity!

Actually, going quickly back to the entire "medical" situation. I just read a very interesting article about "doctors and their lack of communication" with patients! That is a subject I often speak about myself, as well as hear it from scores of online as well as close friends and family. It is one of the most frustrating things to go through, and it makes for a patient not understanding their own health needs. Plus it also causes a great deal of missed information if the doctors do NOT listen to us. Not two days ago, over that paper I needed filled out, I said "IF they would have given me 2 minutes" I could have explained what I was asked to do, and then the doctors office personnel would have understood my position. But, instead, the form was literally "thrown back into my lap" by this person, and I was basically told,  the doctors says go to this "other type of doctor" to get it signed. Well, in the first place, I did not even NEED that "type" of a doctor, and why would I go to a complete stranger to sign a form, that needs to be signed by my own physician that knows my entire medical history??? It was totally stupid. But, again this article is talking about just how patients do not understand, or doctors miss vital information because they do not listen, so tests get done wrong, or don't get done. Or worse, tests you do NOT need that drive up medical costs are done and not even necessary. Plus it makes for a mis-diagnosis that could result in issues of possible law suits. Having an extremely STRONG "communication" level with your doctors to me is even more important than some of the other things. Items that might get overlooked, are put out there, thus both parties get more correct information, which results in less office calls, visits, or hospital stays. It is a win-win, but many doctors were never "trained" in patient handling. I have heard it all. The ones that really drive me nuts are the ones that act like you are "nuts", or stupid. You come in, with possibly information you learned on line, about your symptoms, and you want to ask questions. Maybe they might be relative to your condition. Yet, you are quickly cut off by a disgruntled tone and look, along with something to the effect you do NOT know your self as well as the doctor does! Now, I understand THEY are the ones who went to school, etc... BUT an "INFORMED" patient about their on conditions, body, feelings, and symptoms, is normally a HELPFUL patient! We tend to give more information to HELP get diagnosed, not try to act as if we know it all.As my husband says, when we are chronically ill, we tend to concentrate our "research" on that one or more illness or illnesses, thus we get a great deal more understanding about one or a few things, which can be extremely helpful. Whereas doctors, have to know so much, about so many things, they may just "miss" something due to the fact they do not have time to do that much extensive research on something like RA, Lupus, FM and so forth.

Okay, enough of that. Off my "soap box". I could talk about that subject for weeks.

Back to getting some things caught up. OF course that means "Murphy's Law", or more like "Rhia's Law", when you feel caught up, look out, something else will happen, break etc. I got that paper fixed, we did finally get the right part for our clothes dryer and it is fixed. Our music room is cleaned out pretty well, and things put up in the attic. We found out the parts we need for our leaky kitchen faucet, and I ordered those. I got my Mom's income taxes done, signed, sealed and sent off yesterday. She is doing well, and I am so thrilled about that. The weather is getting nicer by the day. But, on the other hand, since we had little to no "winter" weather, the bugs, vermin, and those damned "lizard" things I hate are already rearing their ugly heads. I saw the first one on the porch last night dammit. No matter what anyone says, those things freak me the hell out. And nothing gets rid of them! I got a new hummingbird feeder in also, that is supposed to be "ant and bee" proof, thank goodness. We lost hummingbirds (well they would not stay) last year due to the stupid bees. We know we have a huge nest close. They were on our back lot in an old piece of a bus, but we think they have moved. Yet, they are close enough that they can find that hummingbird food if it leaks out the least bit, they can find it. Thus the number that come so suddenly, makes us know they do have that hive fairly close. We used to see them coming out of the side of the bus, but we did not last year. Thus we think they may have moved, just somewhere else, but still close.

I am hoping to get some work done on my 2nd poetry book this week also!:) Of course, if the days this week go by as fast as yesterday, it will be next Monday, before I even know what happened. I felt I got little done yesterday, yet it was almost 5 pm before I even looked up to see the time. So, I am going to try my best to combine house hold chores etc, with a week of reprieve hopefully from doctors appts, and be able to work on the quilt and my book! I still want to meet my own "deadline" on the 2nd poetry book. I really had my heart set on getting it published by the end of May. But, that will be here before I know it. So, I have a great deal of work to do before that deadline. If not, possibly by mid-June, depending on all of the other things in life that decide to interrupt us.

Take care... and thank you for "listening"... please comment any time.. I would love to hear from you!!!

Rhia