Wednesday, June 26, 2013

"Mystery" of Fibromylagia Could be Solved!!

http://www.ncbi.nlm.nih.gov/pubmed/23691965

http://www.intidyn.com/Newsroom/article-0009.html

This is just incredible!! IF they now have all of this, there is certainly a way to "cure" it!!! I just had to post this for all of the millions that suffer with this illness that are still all too often told "it is all in your head"  NO! It is in your skin!


Tuesday, June 25, 2013

Truly "Living" between Flares

Life without chronic illness is difficult enough these days. Our times seems to never be our own. When you work outside the home, have children, and try to maintain a home, how you work in "self time" is certainly a challenge.

Yet, when you deal with a chronic illness or illnesses, especially those that bring pain, fatigue and other symptoms that slow you down, it is just as bad as the above. You may not work "outside" the home, and due to illness and pain, you do not have the capability to do all you set out to do in a given day, thus time is even more of a precious commodity. I have been so very fortunate to have most of the long time "flares" seemingly under control. Even though it took many years, even my husband and family notice that my days and weeks of being on the sofa, day after day, not able to do much of anything have become less and less. The past couple of months have just been mind boggling even for me. Sure, I still have daily pain, stiffness, swelling, and the fatigue is always on the back burner simmering. Yet, I have been able to keep them under control, at bay, for a good while now.

The spring and summer always seem to help bring even the worst of chronic illness somewhat to a lesser stance. You still have symptoms, they are like the wolf, always underlying, you know they have not left for good. Yet, medications seem to work better, just having an increase of sun light, and not so much dreary and dark time in our days, the warmth (LET'S SAY Hot as HADES!!) in TX now, the beauty of flowers, green trees, and all of the "renewal" of life, is like breathing fresh life into your own body. Now, I must admit there are some things about the heat and sun that are not good at all for diseases such as Lupus, RA, FM, CFS and the like. As wonderful as sunlight is for all of us, when filtered out from the harmful rays with the proper sunscreen, it can bring an acute flair of Lupus on. You must be extremely cautious about the sun. I know I get a little lax in putting on my sunscreen, or I want to run out in middle of the hot part of the afternoon and put more water on my newer planted plants, and as soon as I step into that hot sun, beading down on me, I can just feel it blistering my skin. I know the Lupus has lots to do with it, but so do some of the medications I take for the Lupus. My skin has become so thin, that a few moments out in full sun, and I am baking not the correct kind. So, please heed the warnings, for all, if you are outside, use the sunscreen to block those harmful rays and do not overheat when doing activities such as yard work. IF you have Lupus, you want to AVOID the full sun as much as possible. Use your sunscreen especially a good one on your face. You have the added benefit of helping to hold back wrinkles and fine lines that those sun worshipers tend to find at a young age.

Thus back to my story. I have been able for weeks now to enjoy being outside. Along with the coming of spring and summer came a renewal of life almost, when I an able to be out in the wonders of the warm weather. I love the plant life, all of the blossoms, the greenness of the trees, the breeze when it is here and not a hot breeze, planting new plants, and all that you can do when the days are longer. Yet I know I take a chance when I get out and "overdo". I know on those days I feel almost normal again, so I want to cherish every moment, by working everything possible in that I have not felt like doing for so long.

Of course, I knew there would soon come a day that the "wolf" would rear his ugly head, and yesterday was the day. I woke feeling like I had partied for days without stopping. I felt like I had a hangover from hell, severe headache, nauseated, pain in my joints, fatigue, and just so lethargic. All of those symptoms you dread, because you know what they mean. Thus I was on the sofa most of the day yesterday. Then you are concerned... you ask yourself "is this just a one day thing", or is this going to turn into a full blown flare? You make it almost worse because you question your own motives. Yet, I tried my best not question whether this is a full blown flair, and try to not feel "personally" responsible it came on. There are times when someone with Lupus may not appear to do anything to "cause" this horrid "Wolf" to surface and yet you still have all of the symptoms. Other times you may be out and about for weeks at a time, even months, staying busy, not even concerned about this chronic illness coming on. And you may run errands, be outside, do yard work, house work, and run around like a "chicken with your head cut off" as my Dad used to say, yet the activities don't effect your outcome of a flare or not. So, as I walked in the very early dawn around my driveway for my usual exercise time, I thought about lyrics to a song that somehow could "signify" all the different things and ways Lupus and the other Chronic Illnesses and Pain act in your life... But, I want to make it more not actually using the Lupus word in the song... but someway I want to get the message over about the heart ache, the devastation, the pain, the fogginess... yet just how much courage you have to have to rise above all of that each morning, face the day... and try to meet the challenge of these illnesses no matter what they decide you should stand for in your life. LOL, brain fog at the moment in fact has set in. I have a certain "word" I want to use to describe what I want the lyrics to be, yet I can't think of the exact word to describe what I am speaking of.

Thus, so as I walked and walked, singing to myself, different ways to put lyrics, in order for whomever hears it will know it is about a heart ache, but not one about love's and the way it can break your heart... I want to word it to where... it is a ........ well damned, an explanation about the disease and its symptoms without using Lupus etc in it exactly... Ah!!!! "Metaphorical Music!" that is the "term" I spent hours looking for to describe the type of music lyrics I am trying to write. See, another day of haze from my brain... yet I won't allow that wolf to get hold of my reigns.... I see him coming, I hear his roar... for I Know the Wolf can come a knocking at my door...

Just a line or so I thought might work... not sure.. but at least I finally found what one word I was trying my damnedest to think of....

Okay, more things to do, like get over the damned "sting" that I got this am while watering plants outside... I received a surprise that I did not want... not sure what it was but I think a ground hornet that decided to use my foot for his stings... I cried and screamed... OMG right between my toes...
Thus I am a bit tired this morning, and kind of worn down...



Friday, June 21, 2013

Here is a much better copy that is legible!

Being "Wowed" by A Few Wonderful People!

Wow!!! Yes, how about that, 2 "wows" in a row from me this week! honestly, I can hardly contain myself at the moment. You would be totally shocked at what a few wondrous people on FB give to me through their sharing, watering my plants, and then my walk this morning, (as I am still dripping with sweat) gave to me!!! I realized so much through those minutes that I am not sure if I can get all of it written down the way my thoughts were going. First of all, I just figured out (and I knew it but it just hit me in a much different way), how much my Mom is proud of me. I also understand now that because of things she tells me now, she wants me to know that their life when I was a child was not all a "fairy tale" as I thought it was. They came from such a different realm of time due to when they were born (The Depression, farms, one room school houses etc) and even though I was a child and did not realize it, Mom so wished she would have "stood up" more for herself and me. Dad also was 13 years older than her. So, he came from a time that women did nothing but stay home, cook, clean, raise kids, work on the farm... they did not work away from home, they did not go to college, they did not do the things that women do now everyday. So, he often treated our home like it was back in the days of when he was young. He though he "ran the house"... I always tell this and it shows just how "backwards" our home life was at times. My Mom till this day, CANNOT PUT GAS IN HER OWN CAR! He never taught her... she never took care of the bills, she never did so many things that I have done all my life. Daddy tended to "be the "man" of the house" and what he said, went... I had to ask him to drive the car to school, or go out. She never made a decision. He felt me being in the band, or even when I went to college after I was an adult, grown and married... he thought that was a waste. But, he was not being "mean" it was just the way he was taught and raised. Well, Mom kind of in the same thing, women did not at that time "stand up" as much for themselves. So, she went along with what he said. The funny thing things really did not change for them until way after Dad RETIRED after 45 years on the same job, and he was older. Then he began to do things differently. But, now when she tells me certain stories about their past, she wants to let me know she wishes she would have did things a lot differently. Especially when it came to me... my clothes, my hair, me going to ball games (Dad would not let me), and just many things we wished she would have stood up for us and changed things for the better. As I told her, "you did what you felt at the time was right". Up until these last few years after being alone, now is when she has come to realize things could be been different. Life at the time, was because that is how it was...
All of us that come from what a friend of our used to call "Gen X"... we are not "birthers", or "Baby boomers" etc... or any of those era's ... we are kind of in between... thus being born in the time of around 1960 until about 65 or so, our lives were in a much different generation. We have watched so many changes, and also we are young enough to experience them also... cell phones, the internet, hell computers themselves (look HOW MUCH) they have changed and changed our lives, flat screen TV's, gosh everything from the front load "steam" washing machines, to ordering from Amazon anything your heart desires... staying in touch by email, FB, or talking to one another through Skype, or Messenger... look at the camera's from just 20 years ago... our cars... you name it, we have watched from the time "we walked on the moon", and now we are "roving on Mars". We are an amazing generation... and here I am at 53 years old (damned I hate to admit that) and the number of things that I have had the opportunity to do and watch are stupendous. When I was 13, I never dreamed I would have a book published, not truly. I dreamed it in the sense of hoping I would be "discovered". But no way would anyone even 10 years ago thought how inexpensive it could be... even in the "self-publishing" era a few years ago, the expense was in the thousands.... now we can have our things online, on blogs, on social media places, on web sites, on heck our own website (i have had several), on Amazon for sale, on an I-Pad, Kindle in "digital" form. So, the blessed journey to get where I am today... yes maybe I did not realize my life could have been different at times, but it has brought me to where I am right now, at this moment, with this breath and the next. Mom questioned me about marrying so young... well I thought that is what I was supposed to do... it was the only thing I had seen... yet so many of my fellow class mates attended college, and are veterinarians, and have made incredible lives for themselves. Some left this small town, and others stayed. The Class of ’78 certainly did spread their wings and fly! I chose a road, but one that took me to work full time, go to college part time, get my associate degree after what seemed like years in accounting. Sometimes I wonder why I did not choose to go into the writing classes, since writing was my ultimate passion, even though I loved accounting.
I went onto discover many other things about myself. Actually I am quite a good painter, in oil paints. I have had many, many compliments on my paintings. I still have some piano and keyboard skills, and even though I am a little rusty, I can pick it back up with a little practice. I also play the drums, learned I can write lyrics, and even put music to it and have an entire song. My health always kept me from “climbing” the corporate ladder. Of course, I never had those skills anyway. I could not be a back-stabbing, back-biting, stepping on others to get what I wanted witch. I could not sleep my way to the top, not my style. Thus, illness in my life was also a journey that lead me other places and to learn other things about myself and life. Without my first two marriages, I would not have my two incredible grown kids. Without my times of being abused, I would not have learned that I am a survivor, and it also taught me to reach our and help others. I never “ran from” anything, but “ran” to something instead. Many thought I ran away from TX, in ways I did, but I actually ran towards a “LIFE” that finally was one that was my own. No one else was telling me how to live. I could continue on with this and I may on my blog, but I don’t want to lose what I want to say here…

I am blessed… I have several women here that inspire me so much more than you could ever know … I have been elated so much with the trust, truth, and the way we open up to one another, and bear our souls… raw… yet in a way of healing. We life each other up, or I certainly know you lift me up… and make me feel alive again, when these disease want to bring me to my knees. I feel incredible fortunate to have you in my life, and it is as if you are right here next to me so many times. Thank you… thank you so much for what you have given of yourself, and asking nothing in return… for that I just could not ask for more, than what we share… Luv you, Rhia

Thursday, June 20, 2013

Awesome News!!! Our Local Paper Has My Story about my books being published in it!!!

WOW@!!! Great News!!!! Our Local paper FINALLY PRINTED an article about myself and my BOOKS!!! I was so shocked. I did not know they were doing it this soon. I just went there on Monday, then came home and resent emailed it to another lady who said she would get it to the proper person. Then I open the paper last night to the 2nd page and there it is, almost an ENTIRE HALF PAGE with my story about my two books, and a picture of me and the latest book!!!! All I could say at first to my husband was MY BOOK!!! We ran to buy more copies and then went by Mom's to surprise her!!! I knew that would make her so happy! She had been waiting for that article to appear hopefully! I will either get a copy scanned and put in or I may find it online at their website. I will make sure I look! Hugs, to all Rhia

Wednesday, June 12, 2013

Since When did the "system" decide to tell us and our physicians what medications we needed or not need to take???

I don't think I told this yet, thus I am now. About a week ago I went into my usual pharmacy I use for everything unless it is something they can't get. I have been using them for years and years. I have not been very happy with the pharmacist as of late. HE is kind of new, he has a foreign accent, and seems nice but what he said to me "took the cake" a week ago. He called me over to the "counseling" window, and told me that "he" and "I" needed to sit down and "discuss" my medications that my doctors are giving me! I looked at him and said WHAT the hell are you talking about? When did it get to where a pharmacist can "tell my own doctors" what to give and what NOT to give me??? He went on to explain, since I have several physicians, YES i do, and they may not know what the other is giving me...WRONG!!! YES THEY DO! I TELL THEM AND THEY TELL EACH OTHER!...as I told him! and he continued to tell me... well they maybe giving me medications that I may NOT NEED!! Are you Insane??? I have multiple illnesses, including Lupus, RA, heart attacks twice, MCTD, Sjogren's... plus others... and NO I am NOT taking "duplicate" or not necessary meds! I KNOW! also what I can and cannot take! So, I asked him??? Where is this coming from ...INSURANCE COMPANY??!! Of course Medicare and the Insurance companies are NOW going to tell OUR DOCTORS what WE NEED and DO NOT NEED??? Nuts, it is totally nuts! He insisted he would "call me next week" and sit up an appt to "speak with me". The hell he will!!!! I got online with my insurance, found this link with them that is about "optimizing" your prescriptions. Mainly they want to see if all you are taking can be "generics" or not, which everything that is and can be for me is already! Plus I could see some elderly person possibly taking more than one of something, if they have more than one doctor, they are confused (as my Mom can be), or do not have anyone to help them... BUT that is NOT me! Quite frankly he offended the hell out of me. If I were not already so accustomed to WG's and all of the other staff etc... I would MOVE EVERY SCRIPT I HAVE! Anyway, I WENT THROUGH AND PRINTED something from Humana that SHOWS  that MY MEDICATION IS "Optimized" and NOTHING CAN BE ADDED OR TAKEN AWAY! I printed it, and next time I go in I intend on handing it to them and telling them to take me of their stupid "list"... I am as I already said, doing what I am supposed to as far as my meds, my doctors and trying to "save" myself and my insurance company money. I don't need some pharmacist telling me what and what I cannot take! If I was on something that might cause a "harmful reaction" then yes, do your job! NOT try and tell me and my doctors about anything else... Lord I was pissed....