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

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....

Five Living Presidents, Many Showing Their Care, The Bad, Good and Surreal

I think the word "Surreal" really fits all of the things going on in my home state of TX, of our nation, and around the world. It seems there is so much "bad" news, it is frightening. Plus, we just know that there could be more not so great situations happening with our nation if there is "hard evidence" about chemical weapons and their use in another country. Are we to the place that so much seems to just happen daily, that we are almost immune to the bad? So, often I have found either people hear something and they are horrified, or just the total opposite, people seem to think "Oh Well, what's new?" Nothing, nothing like what has happened over the past couple of weeks should be considered "normal". From the bombs in Boston, to the explosion in West TX, we should all feel we need to be "diligent" when we are out and about in our surroundings. At no time should be think in these days as they are "it is just a trip to the store". Or our town is small nothing will happen here. As we see sometimes that is just where things happen, in the "small town" settings where horrible things are not expected. No longer is our "bad events" thought to be kept for "large cities", but can happen at any time, in any small town or city, any where, where you least expect it.
You can bet that those in West never thought as they watched TV or ate dinner than within moments their entire lives would be changed forever. Yet, things can happen no matter where you are. IT is truly a "surreal" feeling to see things such as a building collapsed as in Bangladesh, and 100's of people have been crushed in this horrendous accident. Or take a look at West, when you think about a few tanks of something that would seem so "harmless" could cause such a huge explosion and harm so many, we just cannot fathom something such as that, even after we "see" it. It takes time for us to really "feel" and know it is true
I also think for us we have heard the ward "war" so much, it has come to be 2nd nature to us. The news is full of it, our nation is already in it, and had been forever. Yet, to know we could be on the cusp of another war, due to a country using chemical weapons against their own people, that should be something we take extremely seriously. That certainly is not some "war" once again, but something that is such a potential danger for our nation.
  Here is my post from FB this am about all of the news around our nation and world....

Gosh lots of things going on in our State of TX, as well as around the nation and world. It was an honor to see all of the 5 living Presidents and the First Ladies together. I would have loved to be there for the opening of the Bush Library. I am thrilled that it is here in Dallas so we can see it. A great deal of history was standing there yesterday. All of them for the most part went through some difficult times as President and as First Ladies as well. Then onto the Memorial Service in Waco for West, TX. It was something also that I thought about going to, but I knew with President Obama coming in, plus all of the security concerns with such a large crowd, knew it would be extremely difficult to even be anywhere close enough to see anything that was happening. Gosh, the line of fire trucks and vehicles; the first responders was just unbelievable. Our prayers are with everyone there in West. May they all find peace and ways to put their lives back together. I was out yesterday and a couple of our stores were doing things to take up donation to send to West. I though that was so awesome. Then of course we have all of the business about the surviving bombing man from Bostom and a great deal of speculation about the both of them might have been headed for New York to do much more damage possibly. We have this maniac, thank goodness. What concerns me is all of the other "home grown maniacs" out there that are just waiting in the wings, or making their plans to do the same or worse. I worry about chemical weapons, due to those being able to do much damage very quickly. Of course then Bangladesh and the deaths of so many in that building collapse. What a horrible thing to happen. Such a horrific loss of life, and sounds like many children and women. Then we have the Korean issues and all that is happening there. I don't think anyone really knows what to think about the ordeal. I fear just when we let our guard down a little that bunch over there could let loose one of those missiles or more. We still have all that is going on including Syria. That also is an ordeal that is extremely frightening. We could be right in the middle of that situation if chemical weapons are found to be used over there as we said we would not tolerate. So, there are many things going on as I write this that have effected a very large group of people over the entire world. Our nation is suffering from drastic weather changes, floods, droughts, and severe weather in places that never even saw some of the things they are seeing now. This world is having issues all over. It just seems things keep getting more horrific, with very little good news lately.

Either "Feast" or "Famine"?

We all go through stage in our lives that we feel overwhelmed with LIFE! During the holidays, at the start of a new school year, a new job, the birth of a child, kids in sports, and the list of things that make life busy go on and on.
Then, as we grow older, kids grow up, they move out, we possibly work a part time job, or retire, or as myself become too ill to have a job, thus things you would think slow down. Yet, that is so far from the truth. No, we don't have kids in sports, new jobs, new school years, or thing such as that,, but we still have the "bus-i-ness" of life.
With chronic illness that part of business seems to be quite overwhelming in other ways. For me, my "list" of daily or weekly things to do seems longer and longer, while my energy, or lack thereof, may I say, seem to make it even more impossible to finish. You tend to move into doctors visits, making sure your medications are filled properly, insurance claims are taken care of, and your own personal things are handled. We still have bills to pay, we still have groceries to buy, we still have cars to inspect and/or register, taxes to pay, etc. and so forth. So, even if you are growing older, or are dealing with chronic pain and illness, life in any form remains busy in one way or the other.

Also, there comes a time in your life that things that were important, are not so much anymore. Yet, now other things are much more important, and need to be kept up with. When we are young, running around with errands, kids, jobs, and so forth, all too often we feel invincible. So, we may not eat properly, or exercise right. Maybe we don't take medications are we should, take care to guard against the sun, and feel like those things are not that critical. Yet, as you grow into those upper forties, and then into the 50's; NO we are NOT OLD by any means, BUT we feel the years behind us settling into our bones, and how it is effecting us now. We maybe slower than we were, and have to make sure we give ourselves more time for a project for instance. It takes me twice as long to get dressed up as it used to for instance. Two reasons, of course age just slows you down, you also have this "thing" about trying to remain youthful, thus things like skin creams, taking care of your skin, your hair, all of that is much more important than when you were younger. You put on sun block, you use special lotions and creams on your face and skin. You may have to color your hair, or have it cut a special way so it is easier to manage. For me, I have waited now for 15 plus years and got a wild hair to let my hair grow out. Which was really stupid in a way. It takes me so much longer to do anything with it. It requires a great deal more management than when it was short, and believe me, I am truly thinking about having it all chopped off again in order to make my life a little easier. IF my hair is short, it cuts 20 or 30 minutes out of getting dressed time. With it longer, it has to be conditioned more, brushed more, dried, rolled, sprayed and so forth. IF I were not so busy with that, I could have my makeup on, and be out the door much quicker. As it is now, half the time it takes so long to do my hair, by the time it is finished, I am saying to heck with the makeup, I am just running to the market, which I used to NEVER DO. But, you get to this point you know you are either going to have to let something go one way or the other. From pain to energy loss, or lack of energy, you feel like you need to put forth what you have in the things that are really important, for instance GOING to the store! IF you have spent an extra 30 or more getting dressed, then that is just more time you could have have doing something else more important or that you wanted to do.
I find that I am guilt of feeling as if I "procrastinate" more now. Used to, when my mind was made up to do something, it got done. Now, I may have several things going at once, yet I can only put forth effort to one at a time. For instance, if I HAVE to get out and run errands, and go to the store, then I have to put my sights on that, and get that done first. Then, if I get home, and after putting things away, I am still up for it, I can do a few things in the house, or outside that need to be done, or that I want to mess with. Used to something like re-painting my kitchen cabinets would be no big deal. Now, I want to think it is not that daunting of a task, but in reality, with my arms so weak, and this shoulder like it is after being replaced, that is much more of an ordeal than I am trying to make it. Which sucks! None of us want to get to the point we feel we can't do something. Whatever it is, little or big. Used to I was your 'Ultimate DO-IT-YOUR-SELFER."  If it needed to be done, I could and would manage to do it myself in my home. From installing a new water heater, to handing a ceiling fan,  I did it. If I wanted something done, I was the first one out there working on it. I loved being able to do just about anything at the house. It saved money, lots of it at times, it saved time, because I did it when I wanted it done, and I was always proud of redoing my walls, completely remodeling my kitchen, to hanging ceiling fans in every room of my home. Now, many of those things I just have had to admit I can't do. No longer can I hold anything up long enough, to put a ceiling fan in. My arms just won't let me, not this "new shoulder". I will never again have that much strength and endurance to allow myself to do that, and it sucks. I can't get out and hoe, rake, and make an entire flower bed on my own. Hell, I can't even mow my own lawn anymore, and that used to be one thing I loved. That was mowing my lawn. But, there is no way my arms, wrists and hands will let me be shaken around, Besides I just once again l have lost lots of my strength and mobility due to the shoulder replacement, and my neck surgery. It is not worth it to be injured again; although, I admit I miss it terribly. Yard work was always my own "zen". Thus that space has now been "open and raw" where I must find other things I CAN do and feel useful. So, I do my own "indoor" gardening. I have my home full of indoor plants, that require a great deal of care also. So, they help take the "disappointment" of not being able to work outside away, and make me feel worthwhile. I know houseplants are wonderful for the air, environment, plus they make a home beautiful. Then in the Spring and Summer, I set them on my front porch, so they are outside a little, and I tend to them there, thus I can be out for a while, with sunscreen on.
What my point is with this post, is that we move from one realm of life and being busy in one way, thus as we grow older, our lives are still busy, but we slow down and they remain "hectic" in other ways. I have overheard others feel that their elderly parents or relatives are not "useful" as they once were. I have also heard that about those like myself that have chronic illnesses. All of that is just untrue! Each of us serve a special purpose here, and just because others don't acknowledge it, you should always feel it in your own heart. but, that is just not as easy as it seems. When your life is totally flipped upside down, by things such as a chronic illness, or a severe accident, it is very difficult to try and erase what you know, or at least put that memory behind somewhat and begin all over again. It is always much easier to "think" about doing something differently than it is to actually do it.
When it comes to a huge change in your life, making those changes effect everything about you. From the way your feel, you think, from your actions, your thoughts, the way you do things at home or in public, everything changes. You also think about all kinds of things that before you had a chronic illness or before the chronic pain set in, that before never entered your mind. You feel as if you must "plan" for the worst and hope for the best. Even if you are just making a day long trip and will be home by late evening, what you used to now be concerned about, now all changes into different concerns. It is not just about turning off the coffee pot or leaving a light on for the puppies. You must think about your pain or illness, and what medications you may need until you get home. Whether it pain medication of sorts, or other medication, you may have a routine with those meds you must adhere to. Maybe it is what you wear, if you have issues with pain in your legs and feet, or taking shoes to change into or out of when you get to where you are going. It maybe that you need to eat at a certain time, make sure you drink a certain amount of water, tea, etc. For some, even a 2 hour ride means a stop along the way. You can't handle two straight hours in the car without a stop and break to stretch. Sometimes it is things like making sure your have your medication list, your illness list, or like myself I have a medical device, which means I CANNOT have an MRI. OF course you don't expect to "need" one before you get home, but in the case of an accident, you must have something with you that says that you cannot have an MRI, or at least you have something special that they must take into consideration. Some medications require being kept cold. Now usually for a day trip, it is not necessary to worry about that. But, if you are going to be gone for a couple of days, that maybe important, thus you have to make arrangements to keep your medication cold if that is the case. I won't go into all of the details about a long car vacation, etc. That gets way beyond just a few hours in a car. but, just that in itself gives you an idea of other things we must consider before we leave the house. I have a device that controls my implanted pain pump. I have to take that with me to use every twelve hours. Even on a day trip, I will need to use it usually before we get home, at least once. That of course is on top of your usual items of how to dress, what jewelry to wear, do you have everything you need and so forth.

Since this is a long post, that actually began yesterday, I am going to add to it, rather than make a new post this morning. On Facebook, I had written this morning about feeling, "out in left field" I guess you could say. It seems that no matter what kind of thing life brings to me, I never quite feel I have done, said, etc... what life wants me to. I can't seem to feel "fulfilled" with my own self. Even though either it is overwhelm and chaos, or almost bored to tears with the same old thing, I never quite feel I get "life" right. Other people, all around can try and convince me otherwise, but like anyone else, I must feel that within my own self in order to really KNOW that I have done what I think I am here for. I kind of feel as if I have wandered through life, haphazardly, one way, then the other, never really following that true path I was put here to go on. All of us I absolutely think in my soul, have a very solid purpose for being here.For many of us, it is easy" to fall into the pattern of where life has been cut out on the dotted lines for us. for others, and I see it especially in those like myself that once "thought" that pattern was completed and being sewn together, then illness or pain strike, and it seems our "seams" take an entirely different direction within the fibers of life we have sewn together.
Much like a quilt, and I can think of life in that way. Many quilts are very stringent in their patterns. You have a certain amount of this particular piece you need, or pieces in certain colors. They must be sewn together in a certain way or the quilt will never look like it did when you first either saw it in a magazine or online. Or if you had pictured it in your mind one way, thought about and began it; then all of a sudden you bought other material, changed your stitching to a different type of stitch and a different color of thread, and put all of the "new" material and stitches into the "original" that you began. It may be beautiful, but I can guarantee that as beautiful as it s, it surely won't appear to be anything like what you first pictured out. Colors have changed, patterns have changed, stitches are different, and thread is totally new. Thus so is life very much the same when you all of a sudden embark upon a "maiden" voyage of life setting out with one strict way to go, and you take a "short cut", or decide to go around the long way, it will not be as you thought it was. Both of these, the quilt pattern, and your maiden voyage in life can be changed, be enriched, switched, changed, moved, made more difficult, and may not look or feel a thing as it did when you first began it many years before.
We all know that we must deal with changes in life. Whether it is an illness, or a marriage, divorce, birth of a child, buying a new home, selling a home, whatever that change may be, at first it is very different from how you pictured it to be.
But, when you are dealing with a great deal of the "unknown" even more so do those things change in such dramatic ways. What seemed so menial of a change, can turn into a huge ordeal. Yet, we learn to deal with them.
The entire point of it all, is to try your best to "roll" with the changes. Rather than fight them, or try to hold back again that current, you are sometimes far better to allow the waves of life to just flow over you, and often you will see what appeared to be so terrible, could turn out to be even better than what we had planned in the first place.
It remains a very difficult thing to have your entire life uprooted. Like the people in West TX from at one moment, they are eating dinner, to the next, their homes are entirely destroyed. Or those that lost their lives in Boston. Innocently minding their business, running a marathon, and the next they are on the ground, with shrapnel in them, just within a breath's space all of their life they knew, had changed. From the families that lost their children to a senseless shooting, to those that fired on people sitting and watching a movie in a theater, all within the time it takes to blink your eyes, life can forevermore be changed. It takes a drastic toll on those involved, as well as those around. Even us as "strangers" feel the torn tug on their hearts and ours, and the devastation that will be there from the one moment those bullets left those guns to the moment many of those parents take their last breath on this Earth, their lives will never be the same. How could you not question "What might have been?"

Thus so is the way chronic illness and pain takes its toll on your life and those around you. Forevermore, life is never the same.....





This is a post from Facebook on 4/24/2013 that kind of fits into this entire blog post also....

I am so "discombobulated" with life, I am not sure what the hell I want, don't want, want to do, don't want to do, and that goes on and on. It seems when things are a screwed up mess, that we have 50 things going at once, we are running here, there and yonder, I am stressed to the max, all I wish, is that crap would settle back down into a whatever "normal" routine as it should be. Then when things FINALLY settle a little, and I can "see" through the dust of life, then I feel almost bored with the damned everyday, same old routine, day after day, morning after morning, then I see that my life is just one foot in front of the other, I wake up, I deal with the pain, I drink my coffee, feed the dogs, change their paper, come here, and look at the news, the weather, then FB, and email.. and so forth. Nothing really ever changes in my life, I just get "veered" off the same path some for awhile, then it all picks back up into the vicarious cycle that I live in. I live through others I think. I live through my daughter, and all the excitement in her life, or through friends and the things they do, that I don't. I live through everyone else's life that seem a hell of a lot more interesting than mine. Of course when once again the severe pain sets in, or I am not well again, or I have a dozen doctor appointments, etc... then I will wish for things to be BACK to that "normal" boring life I had just weeks before...LOL!!! As the Steve Earle song goes "I Ain't Never Satisfied" and that is the truth for me... it seems whatever, wherever, I never quite feel "satisfied" with my own self. Not my "life" I guess I can say I feel fortunate in many ways in that respect but more about who "I am", what I should do in life, who should I be?, those types of things. I try to find my "way", and right now I feel I am almost at a crossroads, a place where I need to do something, go a different path, make a turn, get out of the middle of the damned road, and find where I am meant to be. And I don't mean in a "physical" state of where I should be? But, in my own inner state of mind and soul... I feel I have either lost some of that, or never really found it...