Sunday, December 9, 2012

New Poem "I Have A Disease"

this is quite different from my much of my poetry and writing. Although my writing is usually about the trials and tribulations of the illnesses and their horror at times, my poetry is more on a positive note. But, this one "arrived" yesterday and I share it with you. A "taste" of what my next book will have in it...

I Have a Disease

I’m floating in the clouds,
Then down on the floor.
I feel settled and content,
Then I want to rush out the door.

One moment I could climb to the mountain top,
In another fall into the sea,
One day I feel like a winner,
Another I can’t recognize me.

I am laughing at this illness,
Then crying in too much pain.
Days I hate the sun to shine,
Yet, others I hate the cold and rain.

Many don’t see it,
They don’t understand.
That the realms of this disease runs so deep,
Often you just don’t feel like making a stand.

You want to be normal,
To be a daughter, wife and Mom,
Yet you are anything but “standard”,
Your life has been robbed.

Of the days of freedom,
To do what you may,
All of those hobbies,
Somehow have drifted away.

No where to turn to,
No one can truly see.
That disdain is your new normal.
Is this how my life must always be?

Rhiannon Steele December 2012
Copyright 2012

Pieces of My Soul - "Stains of Life's Journey" (UPDATE) 2ND BOOK COMING IN MAY 2013!!

I hope everyone will have a good Sunday Morning. for me, I thought it might not be so great just due to thinking I was not going to sleep very well last night. but, as it turns out I did, and actually stayed on the sofa ASLEEP until almost 5:00am! What a miracle! I also want to send a huge hug and Thank you's to everyone who has been so kind to post their feelings about my latest poetry. Like life
e, as a writer your writing always evolves, always changes, it grows as you do. I had not thought much about that until once gain my "voice" came back to me over the past few months. I began to "hear" some of my thoughts about what I felt I needed to write about, and how to go about the way I wrote. It turns out even though there is always a reflection of me in the writing, it has changed with me, just as I have made so many turns, shifts, been over the rocky juts, into the rushing rapids, found the calm waters, and the ever winding of my own journey here. Thus my writing does the same. So, to "change" is always frightening. That means it is also frightening for a writer to realize their own writing has made changes also. Will we still "sound" as we did before? Will our own little "inner" voice continue to be that "musing" of thoughts, feelings and words as it has before? Will our writing still reach out and touch others as it has before? The answer is certainly without doubt "Yes"! In fact, as a writer, you not only keep your "first audience" but you bring in an entire new audience that loves what you say and do. Fr some here, my 1st poetry book Ramblings of A Seasoned Soul" - Brush Strokes of Life in Words, was a first time look at my "heart's work." For others that have experienced my writing for a long while so they already knew it well. So, my book stands in the realms of feelings that have surrounded me in still the future, yet also in the past. My new writing, still all "pieces" of my own soul, a "stain" of my life now is the same, but also different in some ways. As the illnesses and life's times have changed me somewhat, and I have grown and learned from them, my writing reflects those things also. So, as a writer, now I have come to know that my own "style" shall always be. But, the "contents", and the how I put some of those things can sound somewhat different and just be a metamorphic evolution of my inner essence, that shall also gleam in its own right. So, again I bid you a wonderful Sunday, and a smile to those who always know just how to bring brightness to my heart.
(To All who make my life pure when it seems so cluttered with everything that I honestly  wished did not clutter it) Thank you!


Be sure to Check out my 1st Published Book! "Ramblings of A Seasoned Soul - Brush Strokes of Life in Words"


Time to update! (Feb 7th, 2013)

Official! Counting down from today 90 days until my "tentative" release date for my 2nd Poetry book to be published. I am "pushing" myself, because there is still so much work to be done on it, and the last weeks have just been nuts. I have worked on it but NOT like I have wanted to at all. Yesterday, it dawned on me, that May is only about 90 DAYS away!!! I have to get going. I am "sticking" with the name for now. "Time Tattered Musings" - Reflections through the Looking-Glass of Life. Unless something else strikes me for the "2nd part of the title", the Time Tattered Musings does remain for sure. Just wanted to get that out, that May is coming fast, and life seems to be too full, too much to do, and not enough energy in each day to accomplish it all. As the days grow closer, I will probably (and for some they shall be grateful) grow quieter here. I hope to get my butt totally engrossed into this book by the end of next week. My Birthday is coming up on Feb. 15th (almost a Valentine Baby), so after that my plans are to put my heart and head, and time, more into working on it, than other things... I am so thrilled and can't wait to share this 2nd on with all of you. It is going to be a great deal different than the 1st poetry book. There is less "poetry" and many more "prose" and pieces of writing in it. So, I hope that it will also be quite a bit thicker. The 1st one is awesome, and honestly I still need to get it out more and get it marketed. That is just another thing that is on the long list... Hugs, Rhia

Wednesday, December 5, 2012

That Time Again "Rhia's Annual Christmas Letter"

I do realize this seems so quick! I could not fathom it has already came around to time to compose one of the annual "traditions" I hope I will be able to keep for friends and family through the years to go by. My Annual "Catch-Up" the year Holiday Christmas Letter. I share today with you:)
It seems “Annual Christmas Letter Time” slipped up on me this year all too suddenly. As I was thinking about Christmas right about the week of Thanksgiving, I was suddenly overwhelmed with all there is to do, and just how little time is left before Christmas 2012 is here. That means New Year’s Day 2013, is also just around the corner. Honestly, I cannot believe a year has flown by such as this one. I feel like I just completed my 2011 letter to everyone, and put up the decorations. Here it is what seems like a few short weeks, and I was even hesitant about keeping the tradition alive. But, there are some things in our lives, that are wonderful traditions, like for instance, me making the early “no-bake” fruitcake. It just would not be the holiday season without it.

I have found some traditions have been made to be broken, and in a way this year
that hit me very hard, and brought some sadness to my heart in ways. Yet, in others we find out as the “old ways” leave something new aing and Christmas dinner at my Grandmother Svehlak’s house when I and my cousins were young.
It just would not have been Christmas without Granny’s chocolate pie that my cousin Mike and I fought over, her home made cranberry salad, which I make myself now usually for the holidays. It would not be the holidays season unless the women all cooked, while the guys all talked, laughed and cut up in the living room; while all of us kids were in and out, having a great time, awaiting food and presents. It also though seemed to go by so quickly, and within the blink of an eye, a breath’s space, all of us “cousins” are grown, many with kids and Grand Kids of their own, making our own traditions and watching them also change as their families grow up and change also.

Life seems to always be changing. Just as the tides flow in and out ever changing the way the beaches look, life changes us. Often in physical, mental and emotional ways, along with homes, jobs, and just life itself, we seem to always be moving to another goal, another place, another time. We seem to never stop moving, growing and changing.
Change is a magnificent thing, for without it, our lives would grow stagnant. Alas in change means that we must also be able to accept things in a different light. There are times we find out that those changes are not so easy to accept. Losing our loved ones, growing older, our health possibly declining, and all of those things that come with the time we are here as just “human” beings.

We must hold onto the good memories of those days of the past so we can cherish them in our hearts forever. Now my Grand Parents are gone, Dad and his siblings have all passed away, my kids are grown, and my Grand kids are getting big to quickly, and I have had to accept “age” and “illness” have changed me in so many ways. This year has been another one of those years. I went through a total “reverse shoulder replacement” in July 2011. At the time we hoped that was the end of my severe shoulder issues on the right side, but that was not the plan I guess. Earlier this year I began to have severe pain again in the back of my right shoulder blade, down my
Right arm, and running into my thumb. At first, we thought I had possibly done something to the shoulder implant, it has pulled loose, or something with it was not right. After X-rays and other tests, the implant seemed to be as it should be. So, that meant digging further. We did, and after suffering for another 6 months through more testing, and doctor visits, it was decided this new issue was coming from my cervical spine. Yes, my neck was causing the massive pain in my shoulder and arm. At first I was leery. For one thing, it seemed a little crazy and ironic that right after a shoulder replacement I begin to have pain with the same shoulder. Secondly, it was difficult for me to accept that even though I had neck issues and knew about them that,  the pain in my right shoulder should have anything to do with my neck. Yet, the evidence from tests and information the doctors had and we had pointed to the cervical spine. So, after much thought, I went in for a 4 level cervical spinal surgery in July of this year. It was to be the cervical discs from C-3 through C-7 to be worked on. Two of them were taken out completely and implants (artificial discs). The other two they performed fusion on, using bone spurs that came from the area to form what bone chips that were needed to make the fusion heal up and work properly. I was in the hospital overnight. The next day I went home in a “hard plastic immobile cervical collar” that I had to wear 99.9 percent of the time over the next 10 weeks of my life. Right In the middle of the hottest time of year, here I was already burning up with a drought in our area, along with the hottest thing anyone could ever put on to wear any time, much less the middle of Summer!

I survived, somehow I guess, and within 2 weeks after the surgery I began to have a very noticeable change in the painful places in my right shoulder blade, arm, along with tingling, numbness, and other symptoms began to subside. My doctor has told me that it might be a year before I saw many of the changes, and being “nerves” involved we were not made a guarantee about how much or little change for the good etc there would be. “Oh, ME of little faith when it comes to the Lupus, RA, and so forth” you could say. Yet, here I was 14 days or so out of a 4 level cervical surgery, and it seemed like it had been the much belated answer to the severe pain I had been in with the shoulder blade and right arm. Here I am now months and months out of surgery, and so far, I have been able to type, “finish and PUBLISH MY VERY 1ST BOOK!”, and do many things I had not been able to for a long time.

Yes, I said  “PUBLISHED MY 1ST BOOK!” All my life I had written, since the age of 13 or younger. I was told in High School by a couple of my teachers, that my poetry was incredible and I should keep up the writing. All through my life, writing has been my “partner in crime” so to speak, been there as a “friend” when life seemed too challenging, helped me through the wondrous times, and kept me company along my entire roadway of life. I never stopped writing. I have journal upon journal of poetry, prose, short prose and enough of just what I like to call “writing, writing” to fill several books. My dream has always been to be a published Author. Now my dream is true! 3 weeks ago, after so many years of struggling with illness I was able to set a goal to complete a poetry book I had been working on for a long time. I did make my “deadline”, got it submitted for approval, and within 24 hours I had a published book, and I was a published Author!! My life long dream of a book out there to share had happened. I cannot tell you just how incredible that felt. To see it up on Amazon.com, published, with my name on it, or my “Pen Name” was nothing but a large feat for me in spite of all of the illnesses, surgeries, moves, and just all that life has pitched my way, I had accomplished my one goal, to share my “heart’s work” with the world before I was no longer here in this world.

The name of the book is “Ramblings of a Seasoned Soul” - Brush Strokes of Life In Words. It is listed on amazon.com throughout the world, and on several other places that it can be bought throughout wherever amazon sells. My “pen name” is Rhiannon “Rhia” Steele. I am called “Rhia” by some due to it becoming a “nickname” for me years ago. It is a book of what I feel are my favorite 80 poems that I have written. That is out of probably 1000’s. I decided to “share” my heart with the world, especially for those also suffering through Chronic Illness and Pain also, showing them anything is possible if you keep your eyes on your goal, faith, hope and love in your heart. So, it is dedicated in many ways to all souls I have met along the rivers of my journey here, that are also ill with illnesses such as the ones that plague me. Honestly, I never published it for “revenue”. That is not my intention, but if it sells a few copies then that is another blessing in itself. You can find it on Amazon.com in a search for the book name. It is in a “book” and Kindle format and you can do a “Look Inside” and see several of my poems there.

Now I am working on my second one, and I have been again given back my “writing voice” to complete my “book-book” as I call it. I am writing to tell my own personal journey throughout all I’ve endured through out the chronic illnesses and pain in my life. I feel my story may encourage others to keep their chin up, their hearts and minds set on hope and faith. I want to share with all how life can cause you grief, but you can survive and thrive!  So, for exciting news, I guess the book has been the most positive and exciting news through 2012.
Mom is well. She had her other wrist “Carpal Tunnel” surgery done in the summer, and she is doing okay with it. Her hands, neck, hips, and even legs and knees are really giving her heck with osteoarthritis, along with stiffness and pain. Yet, she also gets up and goes when she is ready which is a great thing. We go together when we can, running errands and shopping. I have helped her get some other things in order this year so that has also kept her and I busy through 2012.

My kids are great. The Grand Kids now 14, 6 and 3 are getting too big, too quickly! It is almost impossible to think the oldest, Heather, my daughter, Amanda’s “adopted” daughter is 14! She is a beautiful young lady and involved in all kinds of sports and stays busy with that and keeping grades up thinking about college. The boys are full of energy, and thriving also. So, her “brood” are doing well.

Jason and Danielle still live in the Waxahachie area.They also are doing fine. They both made a job change, for the better. We had an early Thanksgiving holiday weekend with Amanda and her bunch the Saturday before at Jason and Danielle’s home. It is huge and she has it so full of beautiful furniture, a wonderful back yard, and the entire place is gorgeous. We thoroughly enjoyed having all of us together since that does not happen often. With Amanda 7 plus hours away in the Corpus area, it is difficult for all of us to meet at the same time. So, it was a very special Thanksgiving for us to remember.
My husband, Jim, is also doing fine. He continues to work from home with his own company in the web design, development and hosting business. It has been up and down this year with the economic situation all over. He has been fortunate to keep a few of his very best clients “on the books” for the most part. But, we are definitely in need of new clientele, and hoping they come along. He is working on a brand new website for our business, to help show potential clients that we are “rolling with the latest changes” that the internet world is making. He is including the “Apps” part of it, since  the I-pads, I-pods, the Kindles of the world (there are several), as well as “smart” phone technology has opened up an entire new world for being “online.”
2012 has been a busy year for us. I wonder why it has gone by so quickly. Then as I pen this, I can see it is because of just how busy life can keep us.

I hope for each of you, that 2012 has been equally busy full of positive things and brought a year of joy to all! I pray everyone is well, and looking forward to celebrating another New Year that is coming too quickly upon us. We all miss you, love you, and send our prayers and blessings with you. I bid us all the Peace within our hearts that shall remain, even though our world seems to be anything but peaceful around the globe. That is another letter all in itself, so I shall close for now...


Tell all of your families we love them! Merry Christmas! Happy 2013!!!

Life's Realm of Disdain When you are Chronically Ill

I had a really rough day yesterday. It was just one of those that I really first of all had way too many things to do, and not enough time to do them. PLus I am in a slump over the entire book situation. I am sad that no one has bothered to even go there and give me a "Like". At least I thought my friends would go and read a few of my poems and do that. I am not talking about buying the book, but you can now read a few of them, and make your decision from those. Thus maybe many have read them, and they do NOT like them. So, no "thumbs up" I am also very tore up over what I feel is the way I look and I think I have gained way too much weight. And telling me it is meds does not cut it. I watch what I eat to the "Nth" degree. I exercise everyday religiously. I do not eat a bunch of stuff between meals, and still when I look in the mirror I see it on me. It seems it shifted from one place to my butt to be honest. I went to try on a pair of "skinny jeans", and my butt looked like one of those "shelf" butts as I call them. I cannot explain after so many years of having to watch every bite, exercise avidly, then get diagnosed with these horrible diseases that cause you to have to take medications that change your body sometimes horribly. I am not saying I have put on tens and tens of pounds. But, I have put on enough as far as I am concerned that it is noticeable. Then I cannot seem to get into the "rhythm" of Xmas and the holidays. I don't even have my tree and lights up. I haven't done my decorations for the cemetery for Dad and my Grand Parents graves. I have not even written my "annual Xmas letter" or for sure even know what the hell we are doing for Xmas. I just feel I am behind on everything, and even though I am running and running, doing and doing, it is just not enough. Everything takes me 3 times as long to do, even getting my own self dressed. Now I have a dentist appt that I must go. I have a tooth in the very front that is "sluffing" off on one corner. I never would deal with that tooth being really messed up. I feel badly enough about the way my appearance is now. I now have had to kind of put my entire "book" on hold. I wanted to get the articles in the paper, etc. while it is new! The longer I wait, the less exciting it will be and will be kind of like "old news" before it even gets there. I need to run here there and yonder again today. I am exhausted already and the day has not even begun. Everything is important so it is not like I can "not do" this or that. It all needs to be done... and that does not even include re-potting some plants, doing the regular housework, and all of the daily stuff that also goes along with a home, a house, and keeping up with it all.  I am really just beaten and broken down emotionally right now. I am also upset over what I feel is a friend, that has "used" me, and won't admit it. They are and have been, and I think they know they have... anyway, I am extremely upset over that also... then my Grand son and it is the youngest one who is only 3 is very ill. His asthma has quickly turned into being so serious that he may have to be hospitalized today. I am up here 7 hours away plus and feel just horrible and guilty that I can't be closer or there to help my daughter. She is tired, fearful, and really needs a break. Plus my Grand son is going through his own hell, with all of the medications, being sick, can't sleep etc... which is horrible for any child, especially one that young... So, all of it is just piling up and it is weighing my entire entity down.... Just wanted to share in case I seem quiet, or I am not here as much.

Thursday, November 29, 2012

Sharing a Wonderful Post from a Dear Friend...

I have known this gentleman for many years online. And although we have never "physically" been able to meet "he is now in Malta", we have kept a kindred type of spirit between us. Out of despair on both of our ends at one time and the other, we tried to lift one another up and keep each other trying to look at the positive realms of what seemed like extremely negative ones at the time. I can say that he has found much happiness and I am so proud of him and for him. :) He posted this on FB this morning about my poetry book and about our long over the years friendship and I asked Norman if it were all right for me to put his post here on my blog...

"I would like make a very short personal contribution about the author by describing Rhia as a person of unique qualities that are hard to find nowadays. This is not a rhetoric statement because I have known Rhia for a long time and she has always inspired me with her poetry but above all she has inspired me and many more with her personality, her internal strength...I am honour to have come to know her"Norman 11/29/2012

I was totally overwhelmed when I saw what he had written. I have been having a rough couple of days in trying to accept that my poetry book is never going to "sell like hotcakes", and I never expected it to. There are some poetry lovers out there but unless they know the poet, they may never take the time to stop and read those poems... and I am kind of disappointed that more of my friends had not posted or said a word, especially on Amazon's site or createspace. I really wanted to see a few "likes" there, but that was never my intent in writing anyway. I write to help people, and to try to lift others up not gain monetarily. Thus, whether 2 people of 200 "like" or "comment" matters not. I just, as anyone would went through a time of feeling like no one really gave one darn about what my heart's work means to me...

News to Share with All of You about my Upcoming Book Releases...

As I was shopping yesterday with my Mom, I made a very "formal" decision. I AM going to publish my 2nd poetry book in the next 6 to 9 months. Then, I AM going to have at "least" the rough draft of my book ready within 12 months! Those are my two "resolutions" if you want to call them that for 2013! I did a great deal of soul searching as I went through the two different stores, really thinking abo
ut how important it is to my own self to get those two books out for others to read. I did this first poetry book and I am so proud of how it turned out. I also already have began work on the 2nd poetry book. I have named it, started on the cover page, and Jim is actually designing me a Logo, that will be on my books, writings etc. from now on. I wanted it on the first book, but time kept us from really getting it the way we wanted it to look. So, the poetry book is already set in motion. But, I have a great deal of work ahead of me in 2013 to have a "rough draft" ready of my "book, book" as I fondly call it. I do already tenatively have a name for it also, and do have most of it ready, but pieces of it are scattered all over my computer and in my journals. So, as I begin to "piece" it together kind of like a hand made quilt sewing each "sentence" in its special place, picking out the "material" of words, very carefully hand "stitching" all of those pieces to make them fit together, then seeing it turn into the wondrous "quilt top" of the book, ready to put the "backing on and finished the batting inside" of my life, thoughts and musings, please keep me in your hearts and thoughts. Keep prodding me along, making me know that I can do these two things, and encouraging me to keep my two goals with my eyes and heart set on them!!!! :) I need all of the support I can get!
I am officially starting this in January, especially the book itself. The poetry book has already got its beginning and I am working on it as I do other things. but, I want to wait until after the busy holidays and enjoy them, before I truly delve into my book. So, after the first of the year, if there are days that I don't post here, or it is a day or two before you hear from me, then don't be alarmed. I am going to muster every ounce of my entity to stay focused on the end of the race, finishing the book. That in itself will be a monumental realm for me, that is to stay focused. I tend to be one of those multi-idea type of people. I want to do about 10 things at once. I had already mentioned to Jim that I wanted to start a new quilt. And I may do that. Anyone that is a writer understands your "voice" some days may not magically appear and help you get going when it comes to writing. But, I have TOLD my "VOICE" it must get ready to stay ON the TRACK, seeing the end in sight. So, I wanted to begin to let everyone know, I "HOPE" I am not going to just magically disappear with illnesses etc... and that could happen. Anything can happen, and I am willing to admit, life never holds in one spot very long. Just about the time the rivers of life seem to be calm and on the straight and narrow. Here comes the white rapids, and the rocks, and very sharp turns you do not expect! Thus, those things may happen, and if they did then I maybe delayed but if all holds as it is now, I hope to keep on my time table.


My cards also came in this week (11/27/20120 an I wanted to share with you what they look like. I had them made up to pass out to those that ask how to find my book. This makes it so easy :)

Tuesday, November 27, 2012

Optimistic Annual Feelings During The Holiday Season and New Year...

I had been thinking about a subject to write on this morning, and my first thought was how it absolutely sucks to "misplace" something. Later you are wracking your brain, and wrecking your home to find that one thing you thought you put in a "safe" place where you could find it! Well, call it too many things going on, chronic illness, old age, senility, Alzheimer's, or any other of the 1001 reasons we do these kinds of things, but it happens to the best of us. I usually "put" up something that could be a "special" item that my Mom may have given to me from my Grandmother, or Lord knows hiding a gift for a birthday and so forth. Then a couple of weeks later I go to where i "thought" I put it and "viola'" it is NOT there. It comes to mind for me since I have been on a rampage for 2 days now trying to find something that I truly NEED to find, but I am at a loss completely as to where I put it. So, frantically I am trying to recall my steps back then, digging through my "usual" hiding spots, every drawer, every cabinet, yet I still have not put my finger on what I need to find. I gave up and decided to ask my Almighty Higher Power to please allow me to recall where that place is, and see if that works.
Anyway, that was going to be the subject for this piece but alas, I made a decision, to write about another factor that effects us, all of us in fact for the most part. Yet, for those of us with chronic illnesses, and chronic pain it seems to be of even more importance. I am speaking of the "optimistic" emotional realms we have throughout the beginnings of the holidays, often beginning with Thanksgiving, until after the New Years Ball drops on Time Square. WE probably carry much of that on with us for weeks after all of the holiday hustle and bustle are over, but as the old saying goes, What Goes UP, Must come DOWN. Now, I realize some of my readers are thinking, I am not all all "optimistic" during the holidays. You think about the worry about traveling and your health, or all of the errands, shopping, and gifts to buy, with the lack of energy you have. You feel you may never get the meal on the table for the entire "brewd" of family and friends, the tree up and decorated, much less cleaning all of that up to enjoy a very wonderful New Year's celebration. Those things are all correct. Unfortunately, Chronic Pain and Chronic Illnesses do NOT give us a holiday break. Honestly, they can reek havoc with our "physical" state, if we do not get plenty of rest, not take on so much, learn to allow other people to help, cut out some of the gift giving and tell the family to bring dishes and help with the meals. We all of the ability in of course a hopefully tactful way of telling others or reminding them, that our capabilities physically at times are limited when it comes to too many things to do, and not nearly enough time to do them. Or at least for other to pitch in and he carry the load.
But, I am talking more of the "sense" of an internal, deep inside optimism, that only those with these types of illnesses can truly understand. We can feel the "magic" of the season. We tend to have "hope for a better tomorrow, and the day after. We wish for better medications and treatments for the upcoming year, less bad episodes and flares, we reach that plateau that we make those resolutions to quit blaming ourselves, to take better care, such as slowing down, learning to say no, and all that may fit your lifestyle in the upcoming year. If you are alone or lonely, we may have the hopeful thoughts of finding a special someone who can truly understand you. If not "the one", possibly a dear friend, who can be there with you, whenever you need that shoulder to cry on, or that hand to help you off the floor when you fall. I know for me, I may not tell anyone, but I do have that hopeful optimism, that I will have less pain, less side effects from the medicines, possibly have the surgeries do better than expected and be off some of the medications. I hope for better research, and that someone out there finds out what causes Lupus, RA, FM, CFS, ME, MS, along with the other hundreds of chronic and autoimmune illnesses out there, and then announces they know what, why, how and mostly how to eradicate it from those that suffer much to much, for much too long.
Chronic Illness and Chronic Pain, are very unique and much different than a "broken leg", ruptured appendix, etc. "Chronic" means just that, not "acute" in nature. Chronic means basically for the "rest of your life", on going, never ending. It shall be with you until you take one last breath, OR possibly if a cure is found, that you may be cured or at least symptoms get better. So, daily, when we awake, our first thought honestly, is "I am ill". That very last thought we when go to bed is often "I am not well". It has to be the most difficult idea to accept in anyone's life. Other things are horrible at times, and we all have those too. But, something that you or the specialists know little about, and medical problems that will remain with you every day, along with never knowing whether you will wake up "feeling okay", or wake up feeling so sick you can't leave the bed.
So, during these months when hope and faith tend to be much more "vibrant" and alive all around us, I know for me, I feel more alive. We must have some time in our "journey" of this space, and all of the spaces in between to "feel good". Yet, as many that take those good feelings for granted, there are twice or more than are here, that take each day as one that they, we, and I have survived, and we pray that night, we shall survive another day the next day. When you actually go to places such as online groups, blogs, journals, pages that are filled with those desperately needing to find like minded folks, that truly do understand that they are REALLY ILL!! I just cannot put up with a "professional" of any kind trying to brush off a patient with "you are stressed", "take a holiday", etc, and try to tell you it is all in your head. That is such a crock, and for any doctor to not open their ears and brains to listen to a patient should not be in The business of "doctoring" at all! But, we have so many people with these chronic illnesses that do not have doctors, family or friends, that they look for some way to deal mentally, emotionally and physically with these issues. All too often those closest to us, are the very ones that just "don't get it", or they cannot deal with or accept it. That is honestly a pure shame. Their are so many incredible people that are ill, yet they help others like themselves, which creates a wonderful bond for many of us. We give one another some advice, from what doctor we may have had luck with, to medications or supplements that may work, to just needing a shoulder to "cry" on through the "crying out" in words online as you read the pouring out of truly caring folks that shall support one another the best they can from around the globe. We have been given a special "voice" with the internet, and found a whole other way to communicate. It has become a viable and sincere life saver for many. I honestly feel that without all of the help people get on line through the social media's, Twitter, blogs, journals, groups, pages and the list of the way we can "touch" one another across the wire has saved many lives. Lives of those who may have given it up and tossed in their "golden token" for the last time, because they had no one there to listen and lift them up when they needed it.
Yet as a patient of Chronic Illnesses (I have several), and what was and still can be at times, horrid Chronic Pain, I do feel that "joyful" optimistic hope during the holiday time. I have a "renewed" vision of the year ahead, and I am thankful that I "hope" to be given that year completely and find that I am less ill, have many more better days that worse ones, less flares, more energy, and I am able to help others more than I have the years before.

My hope is that I am right about others out there. You do feel that internal, fire of optimism that burns deeply, keeping your light in this world alive and brightly shining for others to see. May you be lifted up out of the quagmire of darkness. I ralize that life is not an easy go for anyone. All of us have our "moments" of Murphy's Law, of sadness, heartache, and crap that just goes wrong. Yet, those with "chronic illnesses" and pain have a huge helping of more sorrow than those without in many ways. these illnesses effect every aspect of our lives, from jobs, family, relationships, to just daily living can be a hard thing to do.

I pray all will find that light... and may peace surround us, and the pain, affliction and suffering be eased, now, during the holidays, the New Year and all of the years to come.... Rhia

Monday, November 26, 2012

Losing those so Young to Lupus....

Only 22 years old.... just goes to prove this horrid disease does not discriminate... age, color of skin, race, nationality, gender... rich, poor, all Star, or just an everyday person... it can strike and be deadly... we need a cure desperately so more of us... including 22 year olds with a entire life ahead of them do not have to die from Lupus...

http://lupusresearchinstitute.org/lupus-news/12/11/25/sending-our-condolences-death-nba-coachs-daughter

Sunday, November 25, 2012

My Own Holiday Dilemna and Life's Journey...

We had our Thanksgiving with family the weekend before. My daughter and her family got to come up from Corpus Christi and I was so thrilled. We all gathered at my son and his girlfriend's home over in Waxahachie (Indian names) LOL ... it is our county seat about 15 miles away... Jim and I took Mom with us ... so it was the entire family ... I got to finally see my 3 Grand Kids ... the two youngest ones, Logan is 3 and James is 5, going to be 6 in December, then her step daughter who they have raised since she was 2, Heather who is now 15! That seems impossible. My daughter started dating her husband when his daughter was only 2. Now here they are with the two boys, Heather is a teenager, and it all seems like just yesterday. I had said in my blog, that I was kind of sad that Saturday. The two smaller ones, especially Logan really don't know me very well. Since they are so far away, they almost "forget" who Nana is. We only see them 2 or 3 times a year, so it is such a huge deal when we do get to visit. Then Thanksgiving Day, ours was very simple also. After that weekend of my daughter's awesome cooking, we were ready for something not so filling. So we cut up some fresh veggies, and fruit ... got some of that low-calorie cheese spread with crackers, and I made some Rice Krispie treats. We visited my Mom for a couple of hours early afternoon, then came home to watch the Cowboys get their butts stomped, and enjoyed the "finger foods". So, ours was fairly laid back and quiet also. Thank Goodness my oven is fixed!!! Over a week ago, I was baking a cake, and our smoke alarm went off. I ran to the kitchen and we at first could not tell anything was wrong. We do have a new smoke alarm and the damned thing is extremely sensitive, so I figured something had dropped on the foil I keep in their and I had not seen it. It kept trying to go off and suddenly I noticed the very top of my cake looking like it was "broiling", yet it still had like 12 minutes or more to go!!! Well it dawned on me, the oven was staying on fully, and with that temperature like that it was as if the cake were in the broiler. So we turned it off.  I took the cake out, then decided heck it was almost done, and was not burned exactly, so I put it back in the oven and it finished baking LOL!!!!! It was already far enough it had risen, but just needed to cook a little more in the center. Anyway, the freaking thermostat we figured must have gone out!!! Right here at Thanksgiving, of course for us, "Murphy's Law", and we had no idea about getting one. So, we got the model number etc off of the oven, and I did a Google search, and found the manual, and the actual part number. At first the only one I found was over a 100.00! I almost fainted ... but then my favorite shopping place, Amazon, had it for 55.00! But, it was of course too late for the holiday, but it worked out my daughter did most of the cooking, and I took stuff I did not need to put in the oven, so we decided to not even cook a huge meal for us, and just do the veggies etc. Then later Thanksgiving afternoon, here comes our next door neighbor's daughter with 2 huge plates of Thanksgiving Dinner after all!!! They had sent turkey, dressing, potatoes, even a piece of pecan pie after all!!! I was already "turkeyed" out ... but Jim enjoyed all of it the next day. :) Anyway, the oven part came yesterday!:) So, Jim found what he thought was the way to put the thermostat in ... which what he found sounded stupid and way to difficult I thought. They had us almost pulling  the burners out etc ... and it just did not sound right. I told him I thought we should be going in through the back, and he almost got pissed at me... LOL!, but I got online and found other instructions that did say part of the thing WAS pulling the BACK off so you could access the thermostat from there, then running the new one through from the front panel that comes off, and to the back, and down through the hole where it goes in the oven. Viola!!! Between the instructions and a little "horse sense" we did get it and I prayed when we turned it on, sure enough; it worked!!! So far so good!  It came on like it should and then turned off when the oven got to the correct temp! LOL! I was shouting THANK YOU GOD!!! All of that, and I was so hoping we had found the issue, the right part, and had put it in correctly...:) I just hope it continues to work... OR a new STOVE will be here dammit. It was a nightmare getting that darned thing in, between his back being so messed up and all of my issues, I thought we both would be in the bed for days after that, well I can't sleep of course, what is new ... and I know his back is once again more painful than usual ... but you know all too well how that goes ... we just have to DIY, do it ourselves, if possible. We would have gone broke having someone come in and repair it ... thus you do what you have to do. Anyway, that has been our "thorn in the side" this past 2 weeks ... along of course with the other crap that goes on with houses, cars, etc.... LOL! Okay I have talked "typed" enough!

Thursday, November 22, 2012

Singing out through the "Vocal Soul" of Writing...

As I poet, writer, and even a bit of a "dabbler" into writing song lyrics, I feel I always need to "say" something very special when I write. As that comes to light in my poetry, it is kind of like my tattoo's, each one representing an event, or a realm that was extremely a rare situation for me. I have 8 tattoo's now, and honestly would love to have more. But, due to all of the medications I am on with the Lupus, RA, and so forth, even a very good tattoo artist feared they for one may give me a hard time in healing, plus just due to my thinning skin because of the Predisone and Lupus itself, I may not be happy now with a new tattoo. I was always thrilled with the others, thus after speaking with him, and giving it much thought I decided that was yet another thing taken away from me in my life by illness.
If you are not aware of these types of chronic illnesses, along with all of the medications you take while going through the "slings and arrows" of those, you may not understand just how many seemingly menial and everyday things you used to do, are just not something you may be able to do now. I am sure we often take for granted, (I know I did), everything from a wonderful snow skiing trip, to a new tattoo, to going to Six Flags, heck doing yard work, laying out in the sun, and even washing dishes or getting your hands in dirt potting plants could mean issues with these illnesses. So, now you find that nothing seems "simple" anymore. I must think through just about every damned thing on my "list" I do. Whether it is doing my house work, running errands, going shopping for a day, or an overnight trip to OK to the Casino, you can bet I have to make "extra" steps in order to have everything I need due to my illnesses and pain.
Now, that said, and I am not sure even why I "went" there, I want to get back on the subject I began with... feeling like whatever I write must have a "direction", a meaning, point to something critical, important, and why in my mind it must be a potent potion that seeps into the readers soul and absorbs into the very heartbeat of their life.
I have read a wonderful book on many occasions about this very subject called "Writing Down the Bones", by Natalie Goldberg. she really makes the goal for writers about never being concerned about what you write, but to write!!! As she goes along in her book talking about having journals stacked up everywhere of "junk", "crap", "bad" or what ever you call things you write that are simply something not great by your standards, you write anyway, and everyday. I have been completely in agreement with that most of my life. I have written daily, just about, for 35 years at least. With the exception of times I have been too ill after surgery, etc, whether it be a poem, a piece of "musing", even music lyrics, I write. I also have "journals" full of hand written, what I like to call the "pen and paper of my heart", where I literally love the feel of the pen gliding over the paper and allowing words from your heart and soul to flow like the ink onto a clean white sheet of paper. Honestly, that is my very favorite "way" to write. It seems to cleanse the palette of the soul for me. I feel many of my best works are in those pages and pages of small ninety-nine cent "journals", those small notebooks many of us have with the different color fronts. I have all colors of those and they are filled page after page, some back and front, even in the margins, of my entire life's story... if you read much of those, you would see how I bare my soul, raw and open, bleeding at times, to allow others in so they can witness just how much faith, hope and love I carry around for others.
But, all of a sudden, and I am not sure why, I began to think that if I did not have something of "value" to say, I best not bother to put pen to paper. Why write something I felt was not "good enough" for others to read? Wow, had I either gotten really "stuck on myself", or went the other direction to "lose faith in what my writing meant"? I had made all kinds of excuses in the past couple of years. Now, just due to time constraints (if I ever want to PUBLISH anything, I have to "type" it into the computer), since I would be as slow as the tortoise if I tried to write it in my journal first then transfer that over to the computer, it would be through my eternity and several generations before I could have something all could actually read!!! Yet, I still had made excuses (some very legit) as to why I had not first of all, gathered my poetry (or a small piece of it) and published a book. I used m chronic pain and illness as a scape goat (which was a huge hindrance honestly), thought I was not "good enough", felt I could not find a way to even get it published, was not able to afford it, was plain scared that everyone would think it was horrible and laugh at me, I did not have the tie, I needed to take care of this, that & the other around the house, Mom needed help... boy I had a LOAD of reasons WHY I could NOT get a book out, or my "1st book" out of at least some of my poetry! As I said, some of it very true; illness and severe shoulder and arm pain did really keep me from even being on the computer for almost a year, or even longer (that is when I wrote once again in the paper journals when I felt like it)... yet other were simply what they were, me procrastinating mainly due to fear. I find myself in "fear" of beginning my "book 0 book" as I call it, the ONE that is the main one I want to have published hopefully soon. but, it will be a great deal of work to get all together, and even trying to begin the "1st chapter" often leaves me and my mind totally BLANK!!!
But, when I "changed up my mind" as I said when I was much younger, and made an actual "date" that I would send my 1st poetry book for publication, everything seemed to become crystal clear. Once that very 1st book was on its way to be accepted and printed, my "voice" burst open, and I felt I had so much to say to everyone out there, in the nation, around the globe. I have someting that others want and need to hear. they absolutely need to realize they are wonderful, perfection in their own right, they can have a renewed sense of hope and faith, they can reach for the higher rung, jump up towards that uneven bar of what we call life, take hold and go with it. You are worthy! That is the message, the portion of my soul, my heart, my very entity that I try to give out to those who read my heart's work.

So, I had to STOP thinking I could not write unless I had something "superior" to say, but I can write anytime, any how, any where, whatever it was, I could write it and I needed to do that. Of course as I have grown, evolved, and gained somewhat a tiny bit more wisdom, my writing has also evolved in so many ways. Even though I thought not too long ago I actually LOST my "voice", it had been there all along, waiting for me to pick it back up, and use it, which is great practice. So, wther my "soul" sings out in rhythm, rhyme, and harmony, or it is in the deepest, darkest pits of the brink of "a little unwell and unsettled of mind", or it is elation, honor and glory, music, or just plain old "crap"; all of it serves a purpose.

I am so thrilled to have what has been my best friend through thick and thin... standing right beside me all the way to places unknown or those familiar, my "voice of writing" always remains... faithful and honest!

Rhia November 22 Thanksgiving Day, 2012