Information of ALL PROFITS from the Sale of both my books...

I wanted to give a quick shout out to let everyone know that ALL of the PROFIT from BOTH of my books - "Ramblings of A Seasoned Soul" and "Time Tattered Musings" will go to the Lupus Research Institute. I thought some may want to know my plans are to not keep anything made by the sale of the books. I feel if I want to help others with these life altering illnesses, besides my writing, supporting the Lupus Research Institute is another awesome thing I can do.

You can see my Author Page, along with both the Paperbacks and the Kindle Versions of both books at :

http://www.higherpowered.com/rhia_steele

Sometimes SH*! Just Happens...

Why is it you get plans made, and all of that seems to go South for the summer,  I guess! It's been that way for me all week long. I get my day planned out. Get up early, do my walking, check on the plants, and had trash day today. From there, everything I had set my mind to do, just fell off the wagon. It was cloudy. So, I felt I didn't want to wash rugs and then it rain on them. Then the sun came out! So, I go put the one that is still wet out to dry and it gets cloudy again!! My plans were to wash some rugs, but I had planned to play catch up here and write on the 3rd book. I wanted to let those know that may have read my Facebook post from yesterday, kind of what the "jealousy" issue is. Mainly, it seems very "coincidental", that every time I write something, or I come out with new poetry, or talk about certain subjects as far as Lupus, FM, CFS, RA, MS etc, this person just happens to say something also. This has just been going on and on. What I don't understand, is why? Here or on FB or where ever you want, you can have a group, a blog, anything you want, and tell people anything pertaining to any and every subject in the world! Mine may suck! So, why would someone take my stuff, or if I write a book, they have to suddenly make a huge writing of something and tell all about it!? Do I honestly care? No, it is a compliment to me. But, I cannot fathom "JEALOUSY"!!!!! It is one of my main pet peeves.!!! I been there , done that with a few women for bosses, that could NOT stand anyone that may in any way do something that could lift them up the corporate ladder. They were so damned concerned over greed and jealousy, that the job was not the issue. I went through it and I took that damned abuse for too long. So, for me, doing something such as this, is being JEALOUS! Of what???? of Me!!!??

So, I was put out yesterday and I posted in general my feelings on the subject. I never mentioned a word that would point fingers, I won't do that, never. But, what I wanted to do, is whomever is reading this, if they feel "guilty", then guess what??? It goes without saying a word.... I didn't even say they are on FB! I write here, and I write other places, and it could be someone more locally, that happens to read my stuff. Anyway, now that it said. It is done and over.

Back to my freaking schedule! I feel like heck. I have a horrid sore throat. I am still running around my house and yard in an old crappy shirt and a pair of boxers! I have not even found time to change... I noticed our sheets seems a tad "off"... so I washed them, which laundry was not in the plans today. Picking up limbs, and chasing the neighbors new little puppy back to its house 50 times a day gets time off the clock. The puppy is tiny. I guess a "tea cup" Chiwauwau...and even though they have the fence appearing like there is no way "Gi Gi" and it is a boy, LOL...could get out... guess what, he does!! Now the funny part is what happens next. The dog will not let anyone pick him up!!! LOL!!! He just runs round and round like a game to him, and just gets close enough, but not enough that you can catch him. It is hysterical watching them chase the puppy around the yard. Well, then he started coming over here. Every time now he hears my voice, he comes running. At first he did me the same way, then I could walk to their gate and he would go in for me. So, at least I could make it that far. Well, then after a few days, he started letting me pet him and pick him up!!!! OMG! Here is the NEIGHBORS puppy, and comes to ONLY ME!!! HAHAHA!!!! Okay, today he did let Jim pick him up once, but for the most part, me... and not even their kids. He will not go to them. I feel sorry for them sometimes... but then it is just too funny....

So, after chasing the dog several time home, trash day, then finally washed two rugs, washed the sheets and my favorite blanket, tried to decide if I should make something sweet! We finished off that awesome, if I say so myself, Poppy Seed Cake, with chocolate almond frosting, and it was delicious. Then I wanted to clean the floors where the rugs go. Of course, from there this, that and the other needs to be cleaned, put up, or whatever may happen in a day at our house. Even though I went through all of that, I can say I did get some WRITING DONE!! So, I am certainly not up to "Stephen King" daily word count but I may make my own daily word count keep me on tract. Actually I read that his DAILY WORD COUNT to write is 1500 words!!!! Not "characters"... words!!! That is huge to say the least. But, I shall never profess to being anywhere near any of our great writers. What is nice though, is getting a tip or two you can use from them to help your own writing skills get better. I know I have said this but I like Natalie Goldberg. Her book "Writing Down The Bones" is my mantra. I have read it numerous times, and the one thing that truly hits me is that she says to WRITE! It does not matter if it is online, in a notebook, with misspellings, on the sides the paper, whatever, as along as you write everyday! That does not mean it has to be good stuff... it maybe crap! But it is what keeps those juices flowing... that is what keeps you in gear and motivated... thus it makes total sense to me...

I promise more... lots more to come... count my words please!

In Reverence & Memory of What Memorial Day Truly Means...

Thought I would write today! But, knowing the weekend is a holiday weekend plus we have the National Annual Polka Festival here over this weekend also, and usually the TX Motorplex has some kind of drag racing special here also, town will be nuts!! With some of our town lost in the tornado last week, they have had to re-route the parade and cut it down much smaller that usual. No of the huge floats on 18 wheeler flat beds will be able to participate due to it now not being in its usual routed process. OF course parking will be a night mare!!!! Thus I went early this morning to get some of the things I felt we needed for the weekend. I sure as hell do not ant to fight off the crowds and traffic. We have lost lots of parking space, we lost many eating places, and even one of our motels took a huge hit from the tornado, and had its roof ripped off. Thus, I don't think anyone will be staying in that one. I do not think the other ones here had any damage to speak of luckily. Yet even as "bad" is ours was, it does not even compare to Moore OK. So, we cannot fuss too much. It does devastate some of our businesses though, because many of them rely on this one huge weekend, and then a couple of other big events through the year to really boost their sales and give them the cash to do other things, and keep things running for the rest of the year. So, those folks will be hurting, I am sure. Several of our smaller little eating places are in the very midst of where the major damage is, plus a couple of them also suffered lots of damage themselves. So, as this holiday rolls in, I hope we all shall celebrate and have fun, BUT also keep a reverent spirit, and be in prayer for those who have lost home, job, and some even family and friends. They do not know even where to begin to put their lives back together again. My hopes are that prayers are answered, and through those that can, they will lift up the city of Moore, and help rebuild it better for those folks than it was before... Be safe this weekend, think also of our soldiers, our volunteers, those who do things above the call of their duty for those in despair, and remember those we have also lost that have fought the battle to keep us all safe... Happy Memorial Day Weekend, Rhia

Letting Go.. Letting Flow... Trying to put the pieces back together again...

I am so totally thrilled over both books and want to talk about them. Yet, with all of the destruction going on around our nation and even right here in my home town, it is difficult for me to be elated over my newly published book, "Time Tattered Musings" - "Reflections through the Looking Glass of Pain & Wisdom". It is so full of things that "matter" in life, a great deal about chronic illness, pain, and how I have tried to overcome them. But, my best I feel is yet to come. I don't mean to "brag". That is not why I just made that statement. I said it because I feel my 3rd book will truly delve into my intimate journey of just how this illnesses and the chronic pain have changed my life in many ways, not all bad, not all good, yet I am still who I am in the "inner core" of me. They have not been allowed to destroy the person who I am inside. That is a hard thing to choose do to. I feel it is a "choice". You can absolutely "choose" to allow illness and pain to change you totally into someone you don't know. At times all of us "feel" that way. But, as a whole, you can also make a conscious choice NOT to have these issues change the person you are. That person who has snow skied, vacationed, been to other countries, painted, sewed, been with friends, helped family, volunteered, taken care of Grandchildren, gardened, been fishing, camped out, and you can make this list go on forever, yet you can know you are still that person within and without. What HAS changed is how you do things, deciding how to possible do something a different way, or allowing one idea or hobby to let go of, yet picking up another that you can now do, even with your disabilities from illness and pain. Yes, there are many of the what we used to consider normal activities of our lives, that we no longer can do, or we must do them at a slower rate, or possibly just had to stop all together. Yet, if you look closely, you can also find a new activity that will make you feel on top of that mountain, ready to shout to the world, YES!!! Look at ME, I CAN do this! I can be "useful". I can thrive, prosper, give back to others, and still be myself, even if I have to find alternative ways to do so. I shall try in my new book to relay that message to each and everyone who is suffering, who will suffer, who has suffered, or knows someone that suffers from all of the horrid chronic afflictions that "seem" to wreck our lives, much like the tornado's of 2013, have wrecked others lives in a different way. We often feel as if a wrecking ball has shattered us into a thousand pieces, that we perceive like we will never be able to put ourselves back together again. Yet, with love of self and from others, with a renewal of faith, with the guidance of hope, with our own "higher power", and with our own tenacity, we can do it! As saddened as I am by all that has happened over the past several days, I am bound and determined to persevere over all of the negativity that surrounds me, and tell it to "take a hike". I shall WIN!!!! And so shall you!!!!:) Rhia

Just Difficult to Fathom! Such Horrific Storms - Mother Nature's Power (5/21/2013)

Last week when my home town of Ennis lost a great deal of their buildings in down town I was just in disbelief! It was hard to imagine that within 4 blocks of us, so much damage occurred. When I drive through the main portions of Ennis where we can get it is just still difficult to think that we had a tornado. A great deal of our main street in town is all blocked off because it is not safe. Or the buildings themselves are damaged so badly they are not safe to be around.
Now, last night in OK, I see what else a tornado can do. They are calling it an EF-4, but thinking it is probably an EF-5 or MORE! There is NOTHING LEFT!!! The town of Moore OK has been completely blown off the map! IT is just like a bomb went off in that town and many of the towns around it. When I see the complete annihilation, as if a war zone was there, that makes me feel fortunate. Those people have lost everything! Including now at least 91 of their folks there, and 21 of them children!!! There are no schools left, no houses basically left, no stores left, NOTHING!!! Cars are gone, places people worked are gone, everything that you need to live a daily life is completely demolished and some of it blown away for miles and miles away.
One gentleman stepped out of his storm shelter with his family to see his home completely destroyed. As he began to go through the rubble, he found a little 2 or 3 year old girl, already deceased he knew. He called the EMT, and of course they told him she was gone. He said after they took her body away, he sat there and just cried his eyes out. He was thankful his family was all safe, but totally destroyed that somebody's little girl was dead, among the rubble of his home. Then there are kids they found at one of the schools, they think actually drowned. They could not get out of a place that filled up with water, thus they passed away drowning. It just sends chills down my spine.

The thought that the main highway from OK City that runs down to San Antonio, was shut down in a large stretch in OK last night. The town of Moore must be right on I-35 below OK City, and about an hour and a half from Thackersville OK where we go to the Casino. There very highway we travel on up further from where we go to that very Casino, was shut down in a large stretch. I cannot fathom all of the dilemma that caused, with it being a main corridor from way above OK City down all the way through TX!!!

I am sure all of you have seen enough pictures of the damage in OK, so I will refrain from putting those up, but I will put a couple up of what happened in my town last week. We are trying to put things back together for the National Polka Festival which is here this coming weekend. We usually have about 200,000 people here for that, Memorial Day, and usually something going on at the Texas Motorplex! One of the best drag racing facilities in this nation. So, the race to get things together enough for the parade and facilities is one hell "of a race"! Yet after seeing the situation in OK this morning, I feel we are so incredibly fortunate, I have no room to gripe. Even though we do have a huge weekend ahead, we have a brand new store opening this week, that thank goodness I don't believe took a hit anywhere, nor did the Motorplex, even though our parade route and the down town dancing and activities will either not be there at all, or will be moved into a strange spot, rather than the usual place, we are still so lucky!!!!

We are once again expecting severe thunderstorms this evening. Of course it is that time of the year. Yet, after seeing the devestation of the past couple of weeks, we are all in the place we want to see "this time of the year" be over.
Like my husband said today, after what happened here in our town a week ago, with an EF-1 tornado, then seeing the damage and horrendous path of something that looks as if a nuclear bomb went off in OK, and other places around TX,, Ar, KS, and some other mid-western states, we are now officially CONCERNED and frightened when a "warning" comes over the radio. You get extremely worried after you have been through even a small one such as here in Ennis. Then within a week you see what can happen in a matter of minutes with a tornado a MILE WIDE go through a town about the size of our county seat of Waxahachie, and it makes you very nervous.

So, everyone out there they may have never lived through this kind of weather extreme such as something that can come out of nowhere, be on top of your home, and city within minutes, when even with as much warning  system, and technology as we have, can sometimes not mean anything when it comes to a "perfect storm" the size of this kind, a mile wide, staying on the ground for 20 minutes, with winds in excess of well over 200 miles an hour, even with 16 minutes warning, there literally was no place to really go, unless you had a storm shelter to get into. This one actually pulled the door OFF of a STORM SHELTER & nearly took the people out of it!!!!

As I keep busy today, picking up tree limbs from crazy wind last night, and baking a cake, cleaning house, putting color on my hair, and everything else I can find to keep my mind off my pain and illness today, but also off the pain and misery of what the hellacious storms can do...

I pray that everyone stays safe..... Rhia

Time Tattered Musings is Officially on Amazon!!! Mother's Day and Tis Monday...

Well it is Monday. The weekend was very nice, but it sure flew by too quickly. We had a wonderful time at the Casino yesterday! I actually was the one that came out ahead!!! I usually "break even" just about or do, but this time I came home about 100.00 over!!! So I was thrilled. LOL, I did not even make too much of a scene screaming hollering either! Usually when I win a fairly big win on a pull, I go bonkers! You would think I won a million bucks! My machine was make enough noise due to me winning that I did attract several people to watch! LOL, I won a little over a 100.00. I went and cashed that in, put it up, then went back, put a 5.00 bill in the same machine, and won another 50.00! So, actually I won about 120.00 all together if you take off me paying for breakfast, etc. Mom had a great time also. But, she was kind of "off" yesterday. It worried me a little. I have been noticing her having some issues with memory, being forgetful, and just some things that concern me. My Grandfather, her Dad, had full blown Alzheimer's. He got really bad the last few years. Then her Mom, also had Dementia, but it was well up into her 80's. Mom is going to be 79 in August. So, of course some "forgetfulness" is expected. Hell! I am terrible lately about lists, and needing lists for lists, and still forgetting stuff and I am younger! :) But, there are some things that just truly give me more of an impression her problems being a little more than just getting a little older and forgetting. She did not take her Casino PLayers card, and she always gets it. She forgot her watch, which she usually takes it. She got to the Casino, and we did not get in good, until she told me, she felt "turned around" and just lost. Well, it is HUGE!!!! But, she has been there enough to kind of know her way around usually. We try to stay somewhat close to each other, but often we wander off, and always have a time to meet at an exact place, so we can check on each other, and see what we want to do from there. So, we were supposed to meet at 4 in the afternoon at our entrance. Well, Jim and I went a little early. I had won and I did not want to spend any of that, LOL, so we decided to just go and get close to the door and wait for her. So, we were about 15 minutes early, but she usually shows up a little early also. But, 4 pm came, and she did not show up. So, we thought she may have lost track of time, or had not asked someone for the time yet. Or maybe she had trouble with a machine and was waiting on someone to come, or she usually goes to the Cashier window rather than using the machines like we do to cash our tickets in. So, we figured it was one or all of those making her run a little late. But 4:15 came and she still did not show. 4:30 came and went, and I told Jim maybe she thought we said 5 rather than 4. Well, about 4:50 she comes walking up. She again said she did a little lose track of time, but again she said she was totally turned around and almost lost as to how to get back to where we usually meet. Well, that really concerned me. Again she said when we got to the car, that she just had an "off" day from even when she first got up. So, again I am going to have to observe somewhat even closer that I have been. I really worry about wither Alzheimer's or Dementia, because of her "symptoms" and the fact it certainly runs in her close family. Anyway, we got home and the dogs did pretty good! Our house was still in one piece, LOL! But, we were totally worn out. Between getting up at 3 am, the drive there, all that walking (OMG I bet you walk 15 miles in a day by the time you go from one end to the other a few times), and then I drove home. So, we were tired but again it was a good Mother's Day! I hope all of you equally enjoyed yours! Of course my book is on Amazon.com now. It in the the paperback and the Kindle sections. You can look inside the book already on both! Here is the link to the paperback:
http://www.amazon.com/Time-Tattered-Musings-Reflections-through/dp/1481920642/ref=sr_1_1?s=books&ie=UTF8&qid=1368447836&sr=1-1&keywords=time+tattered+musings


They have my "name" kind of messed up so both books at the moment don't come up together under my author name. I have an email into them to get that fixed. But they are both there. My 1st ones should arrive around Thursday!!!!! I am so totally thrilled! I am also ready to begin my 3rd book! When I get it started, I will let all of you know what I feel the title will be.

Hugs, Rhia

Happy Mother's Day!

For all of those out there that are Mom's, Grandmother's, Great Grandmother's, & even Great Great Grandmothers, Step-Mom's & all women out there that are in one way or the other a "Mom", I commend you! Being a Mom is a huge and never ending responsibility. WE must have patience to endure it all, from the feedings in the night, to the bumps, bruises, & broken bones along the way. There are the wonderful grades that come in, and the not so great test scores. All of the soccer games, and running around as a Taxi for years. There are the graduations, and moving onto being a wife themselves, in which you never "quit' being a Mother. No matter how old you get, how wise you may think you are, always whether you are 5 or 50 you need your Mom.

So, today in Honor of so many women out there, the do incredible things dialy in order to raise a happy, healthy and successful child or children, may your day be filled with all of the goodness, happiness, and love you give every day of your life.

Thanks to my Mom for all she does for me, even today... as we go to the Casino for her, and for myself as a Mom, to celebrate this special day, I pray she knows just how much I love and appreciate her! Even though we sometimes may not see "eye to "eye" on things, that love and expression of honor always remain.

Rhia

Time Tattered Musings "Reflections Through The Looking Glass of Pain & Wisdom" 2nd book officially published!

Well, not even thinking about it, I officially got my book proofed and ready for publication yesterday on the 10th of May 2013, on International Lupus Awareness Day! Since this is Lupus Awareness Moth, I really wanted to have the book completed and out by the end of the month. But, with the huge help of my spouse Jim, with the set up of it all so it would be in the correct format to print, and help with proofing etc. I made the "deadline". It was my own deadline that I sat in January this year for my main "Resolution". But, when things began to go awry in late January from the massive acute pain in my legs, the "flu" that lingered for weeks, then the double vision, all of the tests, doctors, and even the biopsy on my Temporal Artery, I was not sure I would make the May deadline. I would have been content with June or July, when all of that came up.
But, with faith, and hope, and help from family and friends, through their well wishes and prayers, it is now out!
PLUS, the best news is that Jim and I were talking day before yesterday and we were talking about this book, and my next "book-book" as I call it. It will be my "autobiography" kind of, I really don't like calling it that, but I guess it is sort of what it is, my journey through all that this horrendous illnesses have done to change my life, through the good, bad, and indifferent, and how I want to lift others up and let them know anything is possible, if you truly keep your faith and hope alive.

So, it is already for sale on createspace. It will be available on Amazon, and also Kindle Amazon soon. It may be already on Amazon in print. I'll check. Here is a picture of the front cover.

Her is the URL to createspace.
https://www.createspace.com/4057332

I am so honored to have this 2nd book out. I never thought in my wildest dreams I would have my 1st one published! That dream came true and I was truly satisfied with that. Yet, I felt I needed to tell more of my story for all of those our there suffering from these illnesses and pain. Thus, my 2nd one was born. Now, I know the 3rd one shall be coming. It maybe a longer length of time before it is ready, but when it is meant to be, and if, then it will be. :)

Happy Mother's Day to All of the Mother's out there!

Rhia

Lupus Awarenes Month May 2013

I really need to make another effort to push my 1st book again. It is dedicated to those with Lupus, their caretakers and family, and all of those that support us with this horrid illness. I am coming to the realization that the "Wolf" secrecy in the way it effects our lives, our physical bodies in so many ways causes havoc for us and our doctors. I was at my physicians office early this week, and had a very long, and very worthwhile visit with him. In fact both my husband and I went for several reasons. One of those was due to the fact I have had this "abnormal" blood test now going on for several months, seemingly related to the double vision, and the marked weakness and pain the my lower legs, and from my elbows to my fingers. The weakness in both arms and hands I began to notice just a few weeks ago. But the pain in my lower legs has been there now for months. Some days so horribly bad even on all of the medication I am on, that I could just sit in the floor, cry, and rock. Yet, I know I can't do that. I have to just move on, through the pain, even though it is as bad as it is at times. Back to the visit. As we talked about the blood work, possible medications that might causes this issue, and why it needed to not be there are all but basically "normal" would be none in the blood stream. Mine is way above none. The subject of course since part of this visit is about my Lupus, and other AI illnesses, is just how complicated Lupus is, and just how very little, or how much it can effect someone physically. As he said some have a small rash on their skin or face, and that is all. Others could have any and all of heart problems, kidney, lung, liver, stomach, muscles, joints, skin, eyes, in other words almost everything on the body for some can or are effected. Thus that makes for a very difficult patient, when numerous systems in the body are effected, and trying to treat all of those, then can run into medications have unwanted effects, or them not being something that should be taken together and so forth. For myself, it also means, like many, any of the smallest of infections (as I has on Monday) can go from very minor to putting me in ICU overnight. My body is not able to fight off things like someone with a normal immune system. So, as I found out, I have a kidney infection. That is why I ran high fever Monday. For anyone else it was fine to wait until Wednesday to see the doctor. For me, I really should have called and been saw immediately due to the high fever. Fortunately, I knew that, but I also knew what to do to try and get the fever down, so I did that. When it stayed down on Tuesday, I felt fairly confident I could wait until Wednesday to find out what was going on. But, I also knew if the fever had continued or gone up, even in the night, I had no choice but to go immediately to ER. So, someone with these types of autoimmune illnesses are always on "watch" on guard for something that others would not be as concerned about. A cough for a normal immune system, may be able to wait a couple of days, but a cough depending on other symptoms, especially any that indicate infection for a compromised immune system means DO NOT pass GO, and GO straight to your doctor or the ER. Back to my post now, thus I really need to push this book, and I am trying to decide if I have enough for my 2nd one to be published now. I have less poetry, but I have many prose that will be 2 or 3 pages long for each one. So, even though I have less in number of pieces the book still will be over 100 pages in length. Plus many of the "prose" pieces that are not in this 2nd book yet, are ones I am going to use for my 3rd book, which will be a sort of autobiography about a look into my life and Lupus, illness, chronic pain, and how I have sustained being here without being insane yet. So, I am in a place of a deciding dilemma at the moment. I plan to get through what I have ready for this next book again over the weekend, and make a decision. If I feel I have enough material in it, then I will begin to ready it for publication. That will mean I make my DEADLINE on "Tattered Musings"!!!! Keep my in your thoughts and prayers as I decide what to do, and how to handle this 2nd book. I have a couple of things I learned from the 1st one that will make this next one better I hope. I also have a "logo" that Jim designed for me, that I will be using. I am excited about that. Thanks so much for all of the love and support... and have a wonderful weekend!



UPDATE!!!!!!!

I have made my decision that I DO HAVE enough material for my 2nd book! "Tattered Musings" :) I think I am going to make my deadline of the end of May. Still have lots to do to proofread one or two more times, and get it ready for publication! But, I am thrilled I have made it. Thanks again for everyone that has stood beside me, hand in hand... for you help to make it possible also...

Feel Like It has Been Forever Since I was here

Wow, and it is already Thursday! How time flies when you are not able to do the things you want to do, or maybe it should be the opposite of that. Time should really be "slow" when you are ill and unable to do those things you enjoy or want to get done. Either way, this week has been a bummer in many ways for me.

I came down with "something" over the weekend, that I had thought was a stomach bug. My stomach was just upset, I was nauseated, could not stand the sight of most food other than toast, and a few sips of green tea at a time. But, I had this very "odd" thing that was happening to me. If felt as if each time I tried to up off the sofa on Monday morning, my muscles would almost "lock up". The way I can describe it is, if you are yawning, or let's say stretching, and it feels like your jaw is almost stretched too far and it wants to "lock up" for a moment, well each time I would get up, it was like that, only all of my joints felt like that wanted to do it. It was the oddest thing, and I guess the closest to what I would assume a "seizure" of some type would be. I was just extremely weak, other than the other weakness of I have had now for a few weeks, and just felt horrible. I did not feel "feverish" as far as having chills, or feeling cold etc. So, since I Never run fever, I did not think to even check my temperature at first. But, early in the afternoon, I decided to just check my temperature and it was 101.5!!!! For me that is very HIGH! I had wondered why I kind of felt, "out of it" like I was almost hallucinating... and it was due to the fever. That is also why my joints were acting crazy, the fever was causing me to almost be in a seizure type of situation. I cannot remember the last time, no matter how ill I get, I run temperature. Even with double pneumonia, or whatever I come down with the only time my temperature is a tiny bit high, which is very low grade at about 99.5, sometimes with a flare. So, that explained to me a great deal of the odd symptoms. Also it scared the hell out of me because due to me having basically 'NO" immune system between the Lupus and my medications, I am supposed to never not call the doctor or go to the ER right away with any type of fever. I can go from a mild fever to the ICU very quickly with my health issues. But, I knew I had a doctors appt yesterday (this all took pace Monday) so I took as much BC powder as I could (it has LOTS of aspirin in it) to try and fight the fever. It took most of the day to get it down. I was even putting ice packs on my neck, forehead, arms... to try and get it down. Finally late in the evening it came down to 99.5. I knew if I could keep it down, I should be okay until Wednesday. I felt like hell Tuesday, and even yesterday and today I am still not at my best. But I have another kidney infection! This is like the 3rd or 4th one in the last several months. I can't seem to get over them. I think it is just due to my immune system, plus I also think I have passed several small kidney stones, over the past few months. They hurt like hell but then seem to pass on their on after a day or so, thus there is no use in running to the ER or doctor, since all they are going to do, is put me on an IV and try to flush the stones out. Well, I can drink tea etc... and flush them out myself, as long as they are not too big. OF course if they are large enough, I will be at the ER. The at a bigger size are too painful to not go in believe me. I have had more than one in each tube at the same time. It took a MONTH to flush them all out. It was nuts!!!!
Thus, I am back on antibiotics, and thank goodness also got lots of things explained and cleared up about this high level of myoglobin I have, why that is something to be concerned about, and that is one "abnormal" test that "ANY" in your system is not good. Of course it is not extremely high, BUT if we don't find out what is causing it (which we may not), it could get higher and cause kidney issues, which is what I fear maybe already happening. I may have explained the myoglobin before. Myoglobin is a substance that comes from the muscles, when they are "injured". You usually see high abnomrality of this in those in "crush injuries", bad car wrecks or accidents where someone suffers a great deal of muscle trauma or even athletes that overuse their muscles to such a degree they actually injure them and thus it causes the myoglobin to appear in the blood stream and urine. Having it in your blood stream in itself is not "dangerous" BUT you will have muscles aches and pains, sometimes severe depending on how badly the muscles are damaged and how much myoglobin is put out. Also, certain medications such as "statins" which are used for cholesterol  reduction or for those that have had heart attacks, they put you on a statin. This particular medication can also caused an abnormal amount of myoglobin to be in the blood, and people that have this usually come in complaining of aches and pains in their muscles. it is not all that common, but it cam happen. Well, the bad part of this is that the myoglobin is kind of like "particles", so in other words it is larger pieces, not like a blood cell etc. So, when it meets the kidneys, which are like a "filter" to take out the bad stuff from your liquids in your body, those myoglobin particles can "stick" to those filters, the kidneys blocking the flow out "poisons" out of the human body. Thus, just like anything else that does this, it can cause kidney damage or even renal failure. So, that is why it is so critical to try and find out the reason for the "abnormal" myoglobin in the blood stream, and fix it to stop this from happening. For one thing, the patient is in pain due to muscle damage. For the 2nd you could be looking at potential kidney damage or complete failure. There are also other types of "Myoglobins" that they look for and appear with a heart attack, but this is different. Well, this is not a blood test that is "normal". Doctors do not usually in routine run it, unless there seems to be a reason to. So, my doctor did several months ago due to my all of a sudden, acute muscle pain, that was so abrupt and severe, he was looking for causes. First of all, he took me off my statin, thinking it was the cause. By the way, my myoglobin levels are high, thus abnormal. I found out, unlike some blood work that just because it is a little high, may mean nothing bad, ANY myoglobin appearing in the blood is potentially not good, so there is no thing as just a little or not the high etc. It should be none basically. Well taking me off the statin did not work. 4 weeks later it was still high. So, against all I wanted, he next took me off the muscle relaxer, which of course really caused me issues. I have such muscles spasms, that of course I am now hurting due to muscle spasms. BUT, I went to see my doctor yesterday, for several reasons, one was to straighten out this myoglobin issue, find out why we are looking at the amount being "not good", what that could mean or cause etc. Plus we also got the entire thing straightened out about my Diazepam the office, the pharmacy etc. So, I left fairly happen. I do have a damned kidney infection, which sucks. Anyway, if the myoglobin stays HIGH and does NOT change, then I get to go back on my muscle relaxer, because that is not causing it. IF it DOES go down that means the muscle relaxer WAS causing it, so I get to try different ones until we possibly find one that does not cause that to happen with me. Thus it is an ongoing process, and actually could be the LUPUS etc causing the issue, which is what Jim and I think. WE think the double vision, the myoglobin. the pain, etc are all kind of "together" and they are coming from "either the Lupus" or that they have not found out yet what is going on. I kind of think I may have another AI disease called myasthenia gravis. Just due to the double vision, etc... and some of the other tests that were positive in nature to this illness. But, that I guess we shall see as we go along. "Baby steps" with these autoimmune illnesses, because NO ONE really knows, thus it is sometimes the blind leading the blind in all concerned. Nothing to put down any professional, but none of us really know the depths that Lupus does effect and how. Hopefully with all of the good news out this week we shall see some great changes for the better in a way to diagnose, analyze, treat and possible stop or cure Lupus and many of these other AI illnesses.
Give a hand to the Alliance for Lupus Research!!! Great leaps and bounds they are making in the fight against this mysterious disease! May is also Lupus Month! So let's also try to raise awareness everywhere we can....
http://www.lupusresearchinstitute.org/lupus-news/discoveries/13/05/01/lupus-research-institute-tops-170-million-novel-research-lupus