Monday, April 15, 2013

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

Saturday, April 13, 2013

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.


Thursday, April 11, 2013

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

Wednesday, April 10, 2013

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