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