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

And The Days Goes By - With Nothing Else To Do...

Ah, anyone that happens to be a huge fan of my greatest "mentor", the one person I have I guess you may say "idolized" for many years, she who inspires me, the one that gives me words, when it seems they fail me, and she is so much of a mystery, yet so open to me, Stevie Nicks. The "Title" of this blog, is a portion of one of her songs, and I shall let those that know her well guess which song...

My writing today, consists of some relief, some concern, some disdain, a great deal of aggravation. and I guess the list goes on, as to what feelings I am coping with today.

After a year or more, after 6 or 7 Doctors (I have lost count), after endless tests, blood work, CT's, eye exams of every kind, some I have never knew even existed, after even being put to sleep and have a "temporal artery biopsy", going through Neurologists, and even Higher Specialists, the news yesterday about the "double vision" I have been experiencing for a year was a relief first of all. But talk about feeling also feelings of "I told you so", I knew It all along, I said it in the beginning, what a waste of our time, our money, and much aggravation... we find out that more than likely the Lupus, along with some of my other chronic health issues & medications are the culprits. From the beginning, I had said I felt it was just one more symptom of the Lupus, MTCD etc. Yet, there I went through the most extensive work up any one person could go through... with the exception of BRAIN SURGERY!, every damned test that could possibly be ran was done. The new doctor yesterday, another "Neuro-Ophthalmologist", confirmed my suspicions. He did more testing himself in the office, and ones that I have never encountered. But, when I began to look them up. they also were very specific for double vision, and how to correct it with the proper "prisms" in my glasses. Well, that was the very first thing my own Ophthalmologist did when I saw them. They "corrected" the double vision by putting prisms in my glasses. they at the time I think suspected it to very well be something to do with Lupus, but due to my health issues, and the complications  I have they felt a specialist needed to go into further testing to make sure I was not dealing with yet another chronic illness, like MS, Myasthenia Gravis etc. or also as the idiot, insane doctor did the biopsy on the temporal artery. I got the impression that this new doctor yesterday may have ran some of the tests that I have had, but I gather he may not have went into as much depth as the others did. We were of course relieved at first. But, we were also disgusted, pissed, upset, disappointed, and a number of other things that first of all, I thought it all along, and should have "listened" to my own feelings about all of this, plus if one of these others would have made a damned "diagnosis" rather than continue to jerk me around all over the universe with this. it could have and would have been over months and months ago! The amount of stress, trauma, testing, money and time that went into all of this was ridiculous! I "get" that with my amount of complications they take "extra" precautions, but I feel that this went far above "normal" precautions. Second of all, of course, there is no "cure". My only way to resolved the "symptoms" is to wear the "prismed glasses" which will "trick my eyes" into thinking the brain is sending the signals correctly and my muscles will be tricked into looking both the same direction. What is happening is that the signals go to the eyes from the brain, so the muscles of the eyes will line up the same, and you see one image. My eyes due to a weakness of muscles especially when I am more tired, can't hold the 'signals" to be straight together, thus one eye travels off a different way slightly, causing the double vision. The doctors "goal" is to give me the proper prism and proper amount in my glasses so I never see double vision when I wear them. So, I already have a prism in both of mine now, and I have a new prescription that will be a stronger prism, plus my vision has changed a little, thus correcting the double vision even more hopefully, maybe enough that this does the trick for good. But, there is much more he can add if need be.
All of the crap I endured, and both of us, plus my Mom and family endured to find out it is what I thought anyway. Then they wonder why people don't like going to the doctors and dealing with all of the "drama", time and expense. Often it is just like this incident, it winds up being something you already knew and it is a "benign" situation anyway. Other than my regular eye doctor not being able to say for certain it was the Lupus, they "corrected" the issue from the beginning, and probably could continue to "upgrade" the prism as needed in the future if it is needed.
Our part did come in and it fixed my clothes dryer problem!!! HOOOOO RAYYYY!!! Now I have to catch up on all of the laundry... not too bad with the two of us, but more than usual of course.

The weather SUCKS! Yesterday a.a. on the way to Dallas it really sucked. The rain was so bad, along with the blowing wind and it still being so dark, you could barely see the road and I saw several getting off to wait until they could see to continue on. Of course we had rush hour traffic to deal with, and needed to be at the doctor online, thus we marched on, and got there without any problems, but on the other side of the highway as we reached downtown Dallas, they had a major pile up!!!! A Fed-Ex truck, and several other huge trucks were jack knifed, and then many cars also wrecked. So, that was not a pretty sight for sure. That is why I HATE DRIVING IN BAD WEATHER!!!!! Especially in lots of traffic and on busy highways.. it is just pure dangerous...
Needless to say, I am worn to a frazzle today. Everything on me hurts, and my mind, body and spirit are all just exhausted. My plans are to NOT leave this house, but do laundry, and rest today. I have to get to feeling better so I can sew on my quilt and work on my book!!!!! I still intend on making my deadline!



The other issue of course is North Korea. I am just all up in arms over the entire thing. I feel their "leader" is a total raving insane lunatic! And I am not very optimistic. As I told my husband last night, all of us better have "our" business straight with our "Maker". I am feeling that a nuclear or chemical weapon situation is upon us, or close enough to us with allies that we WILL feel the effects of it. I see it turning into WWIII honestly. This guy is totally psychotic, and he has brainwashed an entire country to totally believe him! Talk about one scary situation! Those people hate us, and they do not know one speck of the truth about us, about any of the world, etc. All they know is lies that have been fed since birth. I feel he has no remorse, and no "feelings" for humanity. IF he harms his own along the way, I feel he could care less. It is truly unbelievable that situation is such dire straits. But, my thoughts are I take it very seriously, and feel that as I said, we better have our hearts set in the right place. I do not want to sound like some kind of weirdo saying "The end is near"... but I tell you I am totally beyond a little leery about all of his threats....



I end today with did you "find out the Song" the name of this blog today lyrics are from by Stevie Nicks?

Easter Blessings, News on A Medical Center Specializing in Chronic Illness, and More...

Lots of bits of great information today! First of all, wishing everyone a Blessed Easter! Whatever your beliefs may be, is not the main issue... the main thing is we all would love to have peace... of heart, of mind, of body and soul. So, I wish everyone a day full of peace, of joy, of family and friends, laughter of children looking for those hidden eggs, and all that today means for you and yours.

I had seen the the "mini-series" "The Bible" is on the Discovery Channel, and thought I missed it. IT appears to really be a great movie, however your beliefs stand, I was really intrigued by the small bits I saw advertised. Enough that I went and found I could down load it all today. There are about 5 different two hour shows to it, so it will be one to watch over days to come for sure. Just a quick thought in case anyone is interested.

Now for other things. I was reading the news this morning, and found out about a new clinic in Scottsdale AZ, who specialize in treatment of chronic illnesses, such as Lupus, FN,, CFS, Chronic Lyme Disease, and also Cancers. They seem to have a totally different view of these illnesses, believing of course, that Fibromyalgia and Chronic Fatigue Syndrome are very REAL! That is not just some "made up" thing to use when doctors have problems figuring out difficult illnesses such as these, or the ones that think women are "depressed, hypochondriacs, nut cases" of whatever. They seem to belief all of these stem from a particular virus, (which I have thought for a very long time that FM, CFS are some how related to Lupus, RA, and all of the other autoimmune illnesses) and that it is these viruses that need to be treated, because they are at the core of why these illnesses come on. As often said, you may carry this around for many years, then a traumatic event, a wreck, an accident, a loss of family, even a stress such as a wedding, etc.. maybe something as benign as having a tooth pulled sets these viruses suddenly in motion, and thus we come down with these life-altering chronic diseases that can just totally ruin our lives in so many ways.

Here is the URL:  http://www.envita.com/

I hope you will check it out. I was truly bowled over with some things I read there. They do make sense in many ways, plus they treat the "entire person" and not just pushing some pills down your throat.

Also, horrific news in a neighboring country Kaufman County TX. They found their District Attorney and his wife shot to death yesterday in their home. They feel this is connected to the murder just aouple of months ago of one of their Assistant DA's. It happened on a work morning around 9am, right in front of the court house. Someone shot him in the middle of the day and got away. I even read that the gentleman in CO, (an official) opened his front door and someone also shot him standing in his front door at his home. They talked as if they suspected the three slayings may all be some how related. I know it rattled me. What a horrible situation.

We are already battling I am sure with the notion of a nuclear situation with the idiot over in N. Korea. It is difficult to fathom that one young man could have that much power over a country of people. I was reading this morning about how he does not even allow them internet, and they sure never get the truth about America and our people. Those people over their think we are horrible, and that we live entirely different than what we do. It was just ridiculous the things I read that they are told there. When you read a headline that says something like "N. Korea's Ominous Bluster" you can't help me be frightened that his insane actions could lead him into making one mis-step are all out nuclear war begins. I know we don't like to think about it, but how can you not when you hear what is happening over there. Things are almost a nightmare in our own country, and some of what is going on, but that over there and those threats are nothing to sit around and laugh about I don't think.

I had talked about my latest venture in making a new quilt. I have had the "fat quarters" of material now for a while. I bought them at a huge discount a while back, knowing they should come out making a Queen Sized Quilt. I already have a backing material, thus other than having to possibly purchase more battling, I don't like much putting it together. I have not been able to get to working on it over the past months due to my own surgeries, illnesses, and everything else in life that goes on. Thus after being able to have a break from feeling so rotten, I got out the sewing machine, and all of those pieces of material, and put a quilt top together over the past couple of days. LOL, I have to laugh at myself though. I was going to make it "plain" for the most part. The material is all different colors, thus it is a patchwork of color for sure. And I was just going to put it together like it is, with some material I have had for a while as the backing, that is kind of a patterned very light peach and white, with the batting in between, and sew in the seams to "quilt" it down. Then yesterday, I got out a couple of the books I bought about quilting and then got to thinking about doing an applique or doing some other type of stitching into it, etc! I don't want to get too carried away with the "fancy" things, because then I will get disgusted with it, and not get it completed. So, after getting the whole thing sewn together, it dawned on me, if I were wanting to do something special on the individual squares, like an applique, I should have done that BEFORE SEWING the entire thing as a top!!! LOL, now if I decide to do something so technical, that means having to have the entire heavy quilt top at the machine all at once. Which is fine, and I may not do that particular thing anyway. But, it just goes to show I am out of practice unlrss I a hemming pants, or doing something simple. Hell, I got confused in putting the thread into the machine correctly, and had to get my book out to make sure I was doing the right. It had a "self"threading device on it to thread the needle, and I have still not figured that out even with the book! It just does not make sense to me the way the directions say. So, as usual, I thread it by hand... easier and much less stressful! :) So, there are my bits and pieces of things for the weekend.

I am not sure if I mentioned here that my Mom's 2nd round of tests on her heart were much, much better! IN fact, so much better, that she does NOT face further testing or surgery for now! Just the same routine of medication and watching very closely her sodium intake. That made us extremely happy last Tuesday! We were all truly blessed and relieved to have the good news on that one.

Still waiting on the "thunderstorms", that so far have not been here. Ah, but it is TX! So, one moment the sun is shining and the next it is black as coal dust and ready to blow you away....

May you enjoy your Easter Day, Rhia



As I wrote this yesterday, I had forgotten to add that Eater Sunday was the day my Dad passed away in 2005. It seems impossible it has been 8 years! There are times it feels like forever and then other times it feels like it was just yesterday. Honestly, as much as I still miss him everyday, he is much better there than here. My Dad would not be able to handle all of the tremendous changes in our world today. He had a large enough issue with the changes about the last 15 years of his life. He was so used to a "small town", with a very small town attitude, that he found it hard to accept some things that the world brought in so quickly. Things like a cellphone, even a cordless phone, he just did not understand it. Heck for years he was "leasing" a phone from AT & T and they were charging Mom monthly for that until I had it fixed! He came from a time, during the Great Depression, that there were no televisions, only radio's, there were no cars when he was very small, a school was a one room building where all grades First through Senior were in the same room. He was Valedictorian of his graduating class. He was not really able to accept why I would go to college, and even though he could see why I needed to work, he felt a woman should really be at home, and the man be the main money maker, just as it was with him and Mom. A Computer??? Forget it! No way he would fathom that. He was more of a stickler for the "old ways". Even though some of that changed as he saw the world change, he really never was able to accept most of it. Anyway, if he were here now, and saw all of the horrid things that are happening daily in our nation and around the globe, even the "good" things like technology, it would just be something he could not accept. As things go, I guess we shall all be that way in one realm or other. So much changes so quickly. We have news and information, of the latest at our fingertips. When you think about what changes have happened over the past 50 years it is mind boggling.  Anyway, I felt I needed to add this since it was the Easter part of the day he passed away. 

The Merri-Go-Round of Insanity with Doctors & Pharmacists!

IT is all like insanity! Some of the things we go through people just don't believe! For instance, I had a prescription I have been taking for years. (My generic diazepam). Every month they have to as the doctor for an okay on the refill. Every month for 5 or more years he okays it, they fill it, and no problem. Week before last on Friday, I cld and put in for a refill. I went in on Sunday and it was not there yet. Well I had forgotten he was on vacation, thus probably the delay. So, Monday evening I go in, still nothing. Then the pharmacist (some new jerk that I can't understand) told me there was NEVER a call for it! Well, I knew that was bull because they had already filled my other script, the muscle relaxer, which he does the same thing approves it monthly at the SAME TIME AS THE DIAZEPAM! So, I call the doctor, They say they sent the script ON FRIDAY! But, they "resent" it. I went through that same thing 3 MORE TIMES! Then it dawned on me, they sent the damned thing to "WAL" MART not Wal Greens! So, I call and someone named "Kelly" at Wally World told me "YES" they had it and they were filling it. She asked me if I still wanted it filled, and I said YES! I was not going through another battle to get it, so I would pick it up the next day! I get there, and they proceed to tell me there is NO script for me!!!!!! One of the girls stepped up as I argued and told what my story was, and she said "well I think I recall m PCP's office calling and "cancelling" it out"!! Well that was a lie, because I was told it was already in the system, being filled, yet she says there is NOTHING IN THE SYSTEM! Well, if they called and it had already been in the computer, the script would show it was there and was cancelled by the doctor. So, I am pissed by now. I called the doctors office, in Wal Mart, and I ask for the nurse. I told her I even told them there at their office to MAKE SURE it was going to WAL GREENS! not Wal Mart. She swore they had sent it to Wal Greens 4 times! In the mean time, I finish shopping, go home and call Wal Greens. Not only did he have it he already filled it!!! AFter I had to have the nurse CALL it in verbally! All 3 of them were lying. No one had done their job right, and I knew it. And then people wonder why we go crazy!!!!!! Hell who wouldn't. When you are ill, in pain, trying to take care of a home, family, a Mom, and everything else, doctors visits etc... then you have to jump through those kinds of hoops for one script, heck it would make Jesus Nuts!!!!! So, when you have to do what you are doing, having to GO BACK due to their incompetence, it is just nine kinds of WRONG!!! Jim read an article about a woman who now charges her doctors for HER TIME if they run late on her appointments. IF she has to sit there more than 10 minutes for a "scheduled" appointment, she send them a bill for every moment of her time spent waiting for the doctor! She sent all of her doctors a formal letter telling them what she was going to do, explaining "her" time was just as important as theirs and they would charge her if she was late or did not show, thus she would do the same! She sent one of her doctors a bill, when she had to wait something like 2 hours (happens to me all the time) over her appointment time, and they PAID IT! That is what all of us need to do. We have to stand up for our rights. Another thing that irks me. I needed a very simple form with two of my "diagnosis" codes on it (I had everything else filled in but that) and my doctors signature. I needed it by 4/1, well before that because I had to either fax or mail it! I took the form in last Tuesday early am. I had a note on it, and told the girls my situation. They totally ignored me. I sent two emails to my doctors nurse, asking her to please check on it. No response. I cld. Thursday evening, and one of them was so rude on the phone. She said "well he fills those out late evenings, or at the end of the week" Well guess what, yesterday was the "end of the week" and they close at noon, and I have NO PAPER! (It is a form I need to send in about my disability). You know how the government is, even State, if they want something and you do not get it there by the deadline, they will cancel everything and make you start all over again! I realize I am not the ONLY patient, but heck, he does all kinds of other crap, he had time to tell his nurse to fill in those codes (hell I know them myself) and then he sign it, or they "rubber stamp" it half the time with his signature! But they DO NOT CARE! We are not as important. We are how they get paid, but it does not matter if they mess up our lives, and then we suffer for their lack of caring, and incompentancy. As I said it is nuts. I have so many stories where I have been screwed over. I guess you read the one I posted about that stupid Neurologist "firing" me! What an idiot!!! I would not take my puppy to him.
So often people do not understand just how frustrating things are with physicians. IF you do not go very often to a doctor, or for tests, or do not deal with a pharmacy very often, then you can't possibly get it, I understand that. But, the millions of us out here that DO deal with it, on sometimes a daily basis, it is definitely enough to drive a very sane person over the edge. It wastes OUR time, our money, and often it causes more hardship on us, by having to go back to the pharmacy, or make more phone calls, and then the doctors now get pissed if you "call more than once". All of them now have a message that says "if you call more than once it may delay your prescription etc.) WELL if they would GET THINGS TO US ON TIME!, we WOULD NOT CALL BACK! So, they have issues for sure. It is a constant merri-go-round of crap to deal with. Then they wonder why we have so much stress, anxiety, depression, and often just plain anger. Well as I said, even Christ would be angry over some of the mess I deal with.