Monday, June 15, 2009

A long winded post as I turn another page in my life..

sMy Dear Friend.... (some of this is about a group I have on the Care 2 website.) So, if pieces of this do not make sense, you will know it has to do with my Power over Chronic Pain and Illness group there... if you care 2 (now that was a play on words) :) know about Care2, the petitions, the news there, the network of incredible people... let me know and I will send you a link... there are thousands, millions of people on there daily trying to make a difference in all aspects of life for everyone....

Here goes.... thanks in advance for reading this... my best to each of you... you are a huge part of my inspiration and life....

Happy Monday and Good Week to everyone. I have been contemplating some things over the past three weeks or so, and am now down to making my decisions and moving forth with a couple of things I feel I am compelled to do, in order to truly feel I am making a difference in my own way.

Many of you already know I am a strong voice to try and help get laws changed, get Chronic Pain and Illness helped out with new research, with new laws, with proper training of patients, caretakers, doctors, and all involved. I am trying to debunk the "myth" in those with Chronic Pain. We are NOT a bunch of "drug-seeking" low lifes, that frequent doctors and ER's just to get "High". The majority of those like myself with Chronic Daily Pain, and Chronic Illness, just want our medications, we do not want to haggle over getting them with the insurance companies, with doctors, with the pharmacies, and with stupid laws that tend to make us look like we are horrible, terrible individuals. Thus much more needs to be done about the entire medical and health situation of all, but moreover, all of the stigma of having Chronic Pain needs to get reeled in. Yes, there are those that "abuse" the system. There are those that are not in pain that do go to doctors, go to the ER's and so forth for the wrong reasons. Yet, staticists show the numbers of "abusers" are extremely low, yet millions of people try and cope with their daily life, in horrible, excruiating pain, that harms their jobs, their relationhsips, families, and leaves them with little or no quality of life.

I am also an avid voice Against Domestic Violence, and Violence against Women and Children.. well honestly violence of any kind... but I stood in the fires of Domestic Violenc for far too long in my life... I was one of the fortunate ones, that did finally get out, but the scars in my mind, and on my heart, still remain at times.

Due to my Chronic Illness with Lupus, and Mixed Connective Tissue disorder, I also am an activist to get much more done about these life altering diseases. There has really not been any quality of studies done on Lupus in 40 years! You will read things here and there, but even though the rise of Autoimmune Diseases is rapidly increasing, we are almost in the stone ages in some ways when it comes to these illnesses (Diabetes 1, Multiple Sclerosis, Sjogren's, Lupus, Mixed Connective Tissue Disorder, and there are literally 100's more), and even my own Rheumatologist will admit, there is still so much not known about these illnesses and disorders. I just read an article about another "new" autoimmune disorder that children are born with, and it can affect them as quickly as after they are two weeks old.

Many of the autoimmune illnesses, are NOT that your immune system is "failing" and not working. Actually, like Lupus, my autoimmune system is overworking to the point my own cells are attacking themselves. Medications are few, and the majority of them carry side effects that over years can be worse than the disorders themselves. Corti-Steriods such as Prednisone is a huge one. It is almost like a miracle drug, when I have a Lupus "flare" yet the long term side effects can be awful. We have made much progress in the realms of Rheumatoid Arthritis, so that is great news. There is much research, many more new medications, and effective treatments to help deal with the daily symptoms of RA. Yet, as I said we lack much when it comes to many of the other autoimmune disorders.

Some of you also know that I am a writer and poet, "in heart". I have felt that my "mission" here on Earth since about the age of 13, is to touch others, and help them through life altering situations, by my poetry and writing. I was blessed with a wonderful gift, and I have tried not to allow it to go to the wayside. Yet, there are times in my life, my own "muse" per se, gets in the background, and I get caught up in other things of life.

I have been contemplating for years now, about writing a book or books. I even submitted many of my thousands of poems to publishers, and do have some that are published at a couple of sites online. I have been told my many, that my writing, the compassion and empathy that shines through my writing, and how I touch some is incredible. I only know and say this not to be patting myself on the back, but rather I know this, due to those that write me and tell me just how much my words encourage and help them. I even had one couple ask permission to read one of my poems at their wedding.

About 6 months ago, after having a long dry spell of not writing much as far as daily journaling etc., I made a vow to myself, that no matter what was going on, how I felt physically, how busy or not busy life was, that I would write daily, even if was junk.

To get to the point before running out of room, I am now making the desicion to split my "time", possibly do away now for some things I am doing online daily, and put the majority of my mind, heart, soul and time into writing my first book. I have contemplated what type of book I would write. Yet, from what others have said to me, along with my own husband & family pushing me, I will be writing my own life journey, through the abuse, the illnesses, the pain & suffering... tell my story, in the hopes that if I touch one persons heart, my "job" here on Earth shall be completed.

I am telling each of you this for a couple of reasons. First, I ask each of you to keep my in your thoughts and prayers, as I take a trip down memory lane. Some good, yet some not so good. I know there will be an outpour of emotions for me, as I tread through my heart & head. I also am having to choose what I will put on the backburner during this time. I don't know if it will take me weeks, months, or a year to write.

I have written since I was 13, yet I have no idea of how much time I will need to finish the book. I am also already looking into how to get it out to the public. I may try and send it out to publishers, but more than likely, I will try the self-publishing route. There are some really good self-publishing companies now, and they help out with promotion, and so much more. The expense varies, but I could save up the money to go with a self-publishing situation.

Here is where my main point of telling you this comes in. I am going to have to as I said in the first post at the top, put some of my efforts, causes, and pieces of life, kind of on hold during this time. I do know I will need to really focus much of my effort into the book itself, so that means less time on my blogs, websites, activist actions, my group here, and so forth. I really am having a difficult time with the entire "time" issue. I also have my own health problems that I never know how I will feel from one moment to the next. I can be fine and in a matter of hours, be in a full blown Lupus Migraine, be totally and completely fatigued and in a Lupus "flare"... plus a growing list of new symptoms that continue to crop up weekly it seems. I, along with my doctors, try and say it is all about the Lupus that is causing issues, yet a part of me feels there could be much more going on, other than the Lupus itself. Yet the symptoms mimic so many other illnesses, so I never really know.

One thing I know I will continue to work on, is my group here, Power Over Chronic Pain and Illness. I would love to have a couple of "co-hosts" that could say hello to new members, post information about illness, pain, and other subjects such as Domestic Violence.... and as you all know, I tend to discuss whatever is on my heart thus it could be anything from politics to gardening

So, if you feel like you might want to help me out here at Care2, with my ongoing group, I would love to hear from you. The group is relatively small now, but I would love to see it grow also. Yet, if I quit actively being here, I know for a fact, it would dwindle and be gone. Tis the life of being actively online... things are so lightining fast when it comes to blogs, groups, the internet, and technology. I also have a couple of other projects, other than being online, from quilting and crocheting, to our new garden, and all of my recent houseplant family I have purchased. Each of those things take up quite a bit of my time daily. Watering, feeding, keeping bugs away, and all that comes with having real houseplants, and gardens, plus daily errands, bills to pay, laundry to do, shopping, cooking, cleaning... darned I am tired just thinking about it.

As of yesterday, I got my software in order that will help me in organizing what I need for the book. Characters, chapters, thoughts, and all that I will need to get very organized first, the software helps with that. From there, then the actual book writing begins. So, my first things is deciding what I have to leave off my schedule, how long per day I will write (waxing and waning depending upon my health, doctors appts, and such)... then I have lots to learn about this book writing software. It is extremely detailed, and has lots to offer, yet it will also be a huge learning experience, to understand how I can use it to actually get my book completed.

I will tell you, my time will be limited here. Rather than spending 3 hours plus here daily with all of your incredibly emails, cards, posts and so forth, I am not disappearing, but if I happen not to answer an email, post or something for a day or two, you can be sure, I have read it, or will, but I may be a little slower in answering. I probably will hand some of the gardening, watering and such over to my husband. I will not be able to spend as much time keeping up with all of the petitions, causes and so forth, but more focus on just a couple, more about Health Care issues, and Domestic Violence. I also intend on keeping my group here for now, yet my "Myspace" and Facebook pages, may not get as much updating of information as they do now. Plus I have a couple of Yahoo groups I am a member of, and I will put those kind of on hold. I intend on telling everyone that I email etc. about my intentions. I don't want to lose any friends throughout this, so I want all to know my plans.

As I start to learn this software, pick and choose my times for activities, decide what to take off the stove for now, and so one, I ask each of you to please post or email me with suggestions, tips, what you see as something I could benefit from, help me get organized as far as my causes and times... and the book... and anything you feel that I probably have not throught about... that would help with time and so forth....

LOL, as I think about what I am writing here, I have to wonder how the heck will I fit everything in, even though I am cutting back things. I am sure as I begin the book itself, all will fall into place... I will fall into pace.. and even though it may never be published... it is two fold for me. I am encouraged by many of you, my family, and others that I can do this, and I do have something to say, that could help others.... and then I can prove to myself, I am capable of writing an entire book. It may not be an awesome book, but I can write it... start to finish... and learn a great deal about myself, life, and writing in the process.

I close this for now, since it is already a small novelette... in asking again, for your thoughts and prayers as I begin this endeavor, for any suggestions you may have, if you care to help on my group, please let me know... anything you feel might benefit this cause will be so incredibly appreciated.

Thanks again... and please keep in touch.... Rhia

"We can judge the heart of a man by his treatment of animals."
- Immanuel Kant, German philosopher

No comments: