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

Our Time Seems to Be on a very Fast Train...

Oddly enough I just had this same conversation with my husband yesterday It will be Monday, and before I blink my eyes it is Friday, and I am trying to remember what I even accomplished. Even in a day's time, I feel as if the hours went by, and I feel as if I got nothing worth while done. When I tried to recall what all I did this week, I had a difficult time doing so. My Mom called yesterday just before we left for Dallas to get my pain pump refilled. She was kind of being a bit tacky to me, because she claimed she had not "heard from me in so long". Well, I spoke with her I know on Monday, and I believe Tuesday Also. I was busy (although I am trying to recall what I was doing) thus I did not go by to see her. So, she lays a guilt trip on me like I have not been by for ages... when I was there on Sunday, then spoke with her twice earlier in the week. Yet, when my husband and I got to thinking about it, I had been very busy. I had ran errands twice this week, and was out and about part of those days. I also did several "projects" or started them around the house, was trying to find a new pattern for another quilt, did some writing online, did all of the usual picking and straightening up, was on the phone several times with doctors, pharmacies, etc. about prescriptions, and just everything else that goes on in a days time... feeding the dogs and taking care of them, I cooked dinner several nights this past week, made a cherry cobbler, then made a banana coffee cake also. So, I had been busy all week long, but to me if felt as if the week was gone, and I got nothing done that I really wanted to get done again. I was talking also about how I cannot remember anything without notes. Everything I do requires a note so I remember to do it. Even taking my certain medications, I must make me a note and leave it so I will remember it as I go through my days. Another thing, that kind of goes along with this, is that I feel I have lost some of my ability to spell words correctly and so forth. As much as I write, read, am online etc. you would think the skills of spellings, using the correct grammar and so forth should be easy, but it is not. I find myself not able to spell some simple word, and it scares me that I have that kind of problem. Plus, I realize age does play a certain part in this... we tend to be slower at things as we age, we tend to not be as coordinated as we were a few years ago, thus we must slow down a little to avoid a fall, or doing something that might hurt us. So, some of what we go through is no different than others without the problem, but age is beginning to affect many things in my life and the way I do them. I also find that I "budget" my time now frequently. For instance, I will make a mental note of about how long it will take me to shower and dress, depending on if I do or do not do makeup etc. Then how much time will it take me to mix up that cake, get it in the oven, and as it bakes during that time, what can I do that is useful? Like ride my exercise bike, or do my walking etc.  Time since I turned about 48 or so began to just fly time. Around the time we arrived in Texas I started noticing that the hours, days, weeks, months and then years just are flying by. I went from arriving in TX in what feels like a very short time not long ago and having one new born grandson, to now him being in the 1st grade, the 2nd one born and almost old enough for kindergarten, and the grand daughter going from being a child to a teenager! It seems totally impossible my Dad has been gone now for 8 years, and we have been together over 10 and married 8. It feels like we just got to TX. Then I look around at the house, all we have done to it, all that has happened with my health, all of the surgeries, the illnesses, all of the doctors and tests.... and I wonder how we have endured it all. I am frightened that I will turn around once again and be my Mom's age, and wondering where my life went to (I already do that anyway) and what did I even accomplish?

We never quite realize just how quickly time passes us by, until we stand still long enough, take a deep breath, and truly give thought to all of the past years. How our lives have changed, how kids have grown up and have families of their own, how our parents have became "elderly" and don't have the same energy they had just a few years back. We see ourselves having to help them, rather than them take care of us. How life itself has changed, from technology.. we did not have microwaves, cell phones, computers, and many, many other "gadgets" when we were in high school. It seems as if that was only a few years ago. But, when you stop and really give thought to SO many ways our world has changed, it is mind blowing! As I just said, just in technology. Think about a camera. There was not a
"digital camera". There was film you had to have processed. There certainly was not a "flat screen" TV, or one as large as we have them now. Medical things such as microscopic surgeries, they had to open you up and you spent days in the hospital, now you go home after many procedures within a few hours. What about fast food? McDonalds, Wendys, KFC, TAco Bell, none of those existed. We had Dairy Queen and Dairy Mart... that was our "fast food". Cars ran 60 to 70 miles an hour, if that fast. There were no CD players, DVD players, video games, rice cookers, bread makers, everything was done, by hand the old fashioned way. And just a few years before we arrived for the most part, there were only black and white TV's and photos, no such thing as colored in those things, radios ran with "tubes" in them, we had no idea about "boards" in things such as that. You had a phone, that would cost a small fortune to call overseas, and it was "attached" to your home, and you certainly could not walk around the house or yard and talk on it. A key opened your car, not some remote. Now hell, a remote starts it, turns on everything, and you get in and it almost drives itself. Your "foot" was your cruise control. You had a transistor radio, no I-pod, I-pad, you read a physical book, not one off of a "cloud" computing system. Did not even know what that was. IF you needed to research something there was no internet. You looked it up in the encyclopedia.  Kids for the most part, walked or rode the bus to school, we did not get cars at the age of 15, unless we came from a very well to do family, or needed a hard ship license to work. Kids did work after school. Or we settled for a small allowance, because we had chores at home to do. Toys, wow, I can't even think about just how many changes there are there. From babies having "computers" now to nothing being left to the imagination, it is insane. Times have changed so rapidly... and there are many things that even my Grand kids will not know anything about. It is crazy....

I will say there are MANY things that have changed for the good. In medicine, leaps and bounds of research are saving many lives now. OUr technology has given us many great things added into our world. But, along with the good, is the bad. We are taking jobs away from humans, because machines can do them. We are polluting our air, water, land.... we can't even make enough food to feed everyone, due to more people living so much longer, plus we are taking up what we need for crops with concrete and steel so we have places for people to live. Our world now is a fast paced, ever changing chaotic place at times... we have more people that are insane and harming others... we are poisoning our own water and food with chemical agents... we are starving some in countries, while others are too fat from gorging themselves with fast food, and an unhealthy lifestyle. So, with the good, comes the bad part of it all also.

I have to wonder in another 50 years, what things will be like, or if we will even exist? Just things to ponder....