Wednesday, July 10, 2013

TIME for US as PATIENTS to STEP UP TO THE WHITE HOUSE STEPS!!!!!

I hope to catch many eyes on this post! What happened to me yesterday, will EFFECT any and all of you potentially that go to hospitals with PAIN, or have medications that are NO LONGER "VIABLE" as income due to Medicare changes! I can say that unless we open our mouths and stand at CONGRESSES doors by January 1st 2014, WE WILL LOSE MANY OF OUR OWN DOCTORS! This is NO JOKE and it came directly from my own ain doctor that I have been seeing for 5 years. He also has an 80 PERCENT MEDICARE PATIENT load that if these things happen with Congress this coming January and nothing gets done to STOP them, he will QUIT TAKING MEDICARE, because he cannot afford to keep his practice open and begin being almost A CASH PAY BASIS FACILITY!!! we have got to do something to stop this one way or the other. The Republicans are going to cause us to lose every physician that is trying to help us, cut all of the pain meds back that do not make them "money", and leave us HOLDING THE PAIN BAG IN OUR HANDS! I went in to take my pain pump refill yesterday. Things "seemed" as usual. But, when my pain physician showed up, his first words other than how are you to me were, "I don't know what we are going to do with you yet? put in a stimulator, change over your medications in the pump, or what?" He was in a stupor almost due to "shock and dismay". The HOSPITAL has decided THEY WILL NO LONGER CARRY the medication I have IN MY PAIN PUMP! Due to it "not making them money" basically, they made the decision to "not carry it in the hospital, thus ALL DOCTORS must use ALTERNATIVE PAIN MEDS that the "hospital" dictates what those will be. Now NOT our doctors, but THE HOSPITAL! Even other medications, such as many ANESTHESIA meds, they are telling that they can "no longer get them". Well what the truth of the matter is, due to all of the MEDICARE CRAP CHANGES, NOW MEDICARE HAS ALL BUT CUT TOTAL PAYMENT to them on certain meds!!!! Thus they will just STOP HAVING THEM in their facility! Not only that, but he personally told me that unless something changes before this huge bull crap change come January 1, 2014, over DRASTIC CUT TO DOCTORS BY 25 PERCENT OR MORE on Medicare patients, HE WILL HAVE TO STOP (along with many others) taking "Medicare patients", plus no longer even see the ones he has, unless they become "cash pay" or have other insurance etc! NOW THERE IS OUR DAMNED GOVERNMENT "FOR THE PEOPLE" AT WORK!!! They are sitting up their on their laurels, the "fat cronies" getting richer and richer EVERYDAY , WHILE WE GET POOR! At our expense they do not give a damned if we hurt, if we are sick, well, they just as soon us die off so they do not have to pay out so much of OUR SOCIAL SECURITY and our Medicare! We need Petitions! We need US, MANY OF US STANDING AT THE STEPS OF THE WHITE HOUSE fighting this!!! I ONLY GOT 25 PERCENT OF MY PAIN MEDICATION IN MY PUMP YESTERDAY!!! I said 25 PERCENT! I received the very LAST VIAL the hospital had. So my pump will RUN OUT IN THREE WEEKS!!!!!
This means my doctor will have to "wait" until the hospital "deems" what they "will carry", and then change MY MEDICATION over to SOMETHING ELSE! That means something that may not WORK AS WELL, that could have MORE SIDE EFFECTS, the means me having to be RE-ADJUSTED to the new meds.... and it is just a massive headache, heart ache, and the very thing I GOT TO HELP THE PAIN... NOW HAS TO BE CHANGED DUE TO MONEY!!!!! That is what it boils down to! The hospital NOT making a PROFIT on that medication, thus THEY WILL GET RID OF IT! To hell with the patients and the doctors that treat them! Now put yourself in my situation, whether pain pump or not. First of all, due to all of the bureaucratic bull red tape my own doctor can't get my medication for me anymore in his office! And even though it is MY medication, they WILL NOT pay a specialty clinic to mix it for me, allow me to have them file my Medicare insurance, and allow ME to take my OWN MEDICATION TO MY DOCTOR for it to be put in MY PUMP! And don't give me the crap about it being "narcotic" etc. For one the stuff has to be mixed ONLY by a specialty clinic. Another unless you have Medicare or insurance to pay for it, it is totally too expensive, and 3rd, they CAN FIND ways to MONITOR IT TO MAKE SURE it does go TO MY DOCTOR, and it IS PUT in my pump! They could deliver it to his office, or seal it some way that only the doctor can open it etc... there are things to do... we are not a stupid bunch of people.. Technology today can do incredible stuff, so getting a medication to a doctor under some type of specialized way it can only be opened and used it totally possible. Other than that even though my pain doctor has a brand new clinic, has met all kinds of ridiculous red tape, including "special" computers that Medicare MADE THEM GET, that cost something like 35,000 OR MORE in order for the government to process Medicare claims! IT could not be some type of much less expensive software etc... it had to be HIGH DOLLAR "SPECIAL" COMPUTERS that the doctors must foot the bill for!!!! Then He can't even have my medication brought to his office for a few hours for me to come there WHERE IT ONLY COSTS ME 40.00 FOR AN OFFICE VISIT, to have it filled, VS. what I PAY NOW TO THE HOSPITAL, WHICH IS A 200.00 CO-PAY to have the pump filled!!!! Believe me you talk about a "racket"!!!! Between the hospitals, the government, the pharmaceutical companies, and some pharmacies included and big CLINICS ETC. , they are making BILLIONS, while our small doctors, with small practices, many of our BEST PHYSICIANS are being reamed over the coals, driven out of business (like my own Rheumatologist earlier this year) due to those crooked, greedy, not giving a damned bunch we call "Congress". The lobbyists for these bigger hospitals etc RULE IT WITH LINING POCKETS! IF you CARE ABOUT YOUR OWN HEALTH (and this is to INCLUDE OTHER MEDICATIONS ALSO, NOT JUST FOR PAIN) THEN YOU AND I MUST stand toe to toe, hand in hand and find way to get this ridiculous mess stopped!!! I certainly am only ONE PERSON but with all our VOICES, WE CAN and have to make A DIFFERENCE!
PLEASE, PLEASE I URGE YOU, I BEG YOU TO DO YOUR HOMEWORK on this. Look up this stuff online, talk to your own physicians, ask them what will happen with them if this Medicare crap goes on at the first of the year, ask around and watch for articles from the Pain foundation, etc... we have to get this fixed and permanently, and quickly, with haste!!!!! Rhia




I have accomplished A great deal more since this post: This is Saturday the 13th. I will try and catch up here and all of the information is also on my FB page along with and FB group I began ONLY for getting who we need to get to so Medicare can be FIXED!!! 

The new FB groups page you can join is:

https://www.facebook.com/groups/435383466560951/?bookmark_t=group

Other links that are helpful are listed thee, but let me see if I can also get them here!

http://www.senate.gov/general/contact_information/senators_cfm.cfm

http://www.house.gov/representatives/find/


Talking about a drug shortage here... no wonder we can't get our medications!!!!
http://www.bioethics.net/2013/04/psst-theres-a-drug-shortage/

http://www.raps.org/focus-online/news/news-article-view/article/3479/reform-bill-takes-aim-at-gray-market-causes-for-drug-shortages.aspx



It is time for all of US to get ALL of Congress, and our entire Governmental body, including Our President back on bard to straighten our the broken system of Medicare and make it FOR those who it is for - US!!!! Petitions, suggestions, and ideas are welcome! I would like to get everyone to participate in any way you want or can to get the word to the Congress and President we want CHANGE, but CHANGE that WE, THE PEOPLE benefit from! NOT drug companies, not hospitals, not lobbyists, not large groups of medical professional or any of the rest that took an oath to SERVE and CARE for us, but THEY PREFER to FORSAKE THAT and allow GREED and CORRUPTION TO take OVER!!!! While we are left in the cold, paying for their mistakes. Let's show them that we mean business. Help me, help you!!!!

Monday, July 8, 2013

"Headlines" Just Too Much that is Too Difficult to Deal with! "No Time To Kill"...as the song goes...

Monday July 8th HEADLINES- Folks this is sad and scary for one day’s worth of headlines??????

1) 42 dead, 322 hurt in clashes near pro-Morsi sit-in
2) Extreme summer weather grips nation
3) Flash flood warnings from Gulf Coast to Ohio Valley
4) 'Surreal' escape: How survivors fled badly damaged Asiana Flight 214
5) Will forests flourish after fires? In a warming world, not always
6) Plane crash in Alaska kills 10
7) Captain of crashed San Francisco plane was 'in training,' had only 43 hours piloting 777s Syrian opposition head expects advanced weapons
9) Five die, 40 missing after Canadian freight train disaster
10) Singapore Inquest Rules American Killed Himself
11) Bus swerves off the road and crashes in central Spain, killing 9 people and injuring 21 others, Spanish police say -
12) Ohio sinkhole swallows woman's car
13) Officials say gunmen kill 6 people in Iraq ambush
14) Fearing contamination, Chinese pay more for imported infant goods
15) WHO forms emergency committee on new MERS virus
16) Insecticides can weaken and kill honeybees -- that's bad news

if the last one is the "bad news" damned what about the ones ahead of it? Of course No Honeybees means we are doomed anyway!!!

When I came as usual to my computer to check the weather first, then read the headlines, all I wanted to do is turn off my computer, hide in a hole, and forget about everything in THIS world! My Lord!!! Where are all the "good" headlines? Now, one could look at this several ways. One, our world is a frigged up mess!!!! Each day we are so bombarded with all of the horrid crap going on in our towns, cities, counties, states, nations and countries... we almost act "benign" to it all. We have grown accustomed to seeing the bad that we do not stop to think, GOD! What is happening??? We take it all with a grain of salt and go on. Or we could look at all of this and say it is the "news" media. Let's face it! "GOOD" news does not SELL like "bad" news does!!! People want the hard core, gory details of everything that is a slaughter house type of news story, but the "good stuff" many just blow off. Or what I feel is the first two are true, but that is because that we have gone ape shi& nuts! We have destroyed our water, land, and air! We are people that are crazed with MORE, MORE,MORE & ME, ME ,ME!!! Greed runs our nations and countries, including our governments, and corporations. Those WITH the MONEY RULE whether we want to believe it or NOT, they rule over all of us that "think" we are the middle guys or the poor. WE are NOT the ones with the "good" life! Look around, from fire to floods, from drought to famine, from hurricanes to tornado's, from changes in our weather patterns that have reeked such havoc over our country alone, that we have lost billions of acres of our land to such disasters man-made and human, that most of us living today will never see "Humpty-Dumpty" put back together again. In other words, our temperatures right here in my own home town have soared so high, and we have had such drought conditions, that many, many of our huge 100 year old trees, all of our trees, appear that they might just die! We ourselves have lost two huge trees that have to be over 50 years old. And we fear losing the three incredibly beautiful blooming ones in our front yard! They are so in lack of moisture they can't even bloom properly. We have been here 7 years and I have never seen things so bad, and that is just our lawn. Drive around our town, and so many lawns, trees, shrubs, things that were planted years and years ago are shriveling and dying due to extreme heat and lack of water! And there is no way to afford to try and water all of these, you could not pay the bill it would be so high, plus things are in such dire straits, it would not help anyway. Then we also suffered the tornado damage. It was not like many, many other towns around our nation, but it was not great either. We have suffered thousands and thousands of dollars of damage that some is just irreparable. You cannot put "value" on personal photos, things the are of value in the heart, not monetarily when disaster strikes.
We have become so selfish, so inward, rude, insensitive, and just plain, right down unwilling to open our eyes, and see that the world is growing near that "time" closer every day. And we go one doing, being, and not seeing that we should STOP and give some thought to each day... when you SEE HEADLINES!!! like this day after day, after day... killings, murders, man made disasters, Mother Nature's wrath upon how we have mistreated everything we have been given... and people have "No Time To "waste" and the song title says another word, but if I put the correct word in there I might have the nations spies knocking on my door... anyway, no time to be "bothered" to help someone else. Rudeness prevails. People are so lazy, or so uncaring about others, that they cannot take one extra minute to put a shopping cart back in the front door at Wal-Greens!!!! Now tell me why it is so damned hard to walk an empty basket in the front door of the store and put it up??? IT just bugs me to no end, and I put EVERY one of them up each time I see then sitting on the sidewalk outside the store! Wal-Greens does not have space or a place for baskets to sit outside. They can roll out in the street, or damage a car... or someone fall over one... why can you have time to bring it out to your car, but you cannot take that one more minute to roll it in???? Because we have "no time" to be bothered with being "nice", or thoughtful. WE push our way into this world, and then we push, shove, and scratch our way through out the world the rest of our lives... often putting everything "we" want ahead of all others and all other things. So, today as YOU read these headlines, ask yourself...How do THEY make YOU FEEL!??? What you do think when you read all the "bad" in our news daily? It makes me literally sick!!!! (by the way, I am not one to "profess" and speak about "religion" here or online, I speak about FAITH often, and I do not want to sound like some "doomsday" prophet, but we should be on our knees everyday praying for things to be better, asking for things in people's hearts and minds to change. I fear... it is TOO LATE to "fix" this world....(IMOHP)... not anything, anyone has to agree with me about....Rhia



This is the song I was speaking of in this post..."No Time To Kill" by Clint Black... The lyrics remind me always of just how crazed this world is, how hurriedly we allow things that should matter to pass us by... and the things that don't we allow to take over our lives ..... Clint Black There's no time to kill between the cradle and the grave
Father Time still takes a toll on every minute that you save
Legal tender's never gonna change the number on your days
The highest cost of livin's dyin', that's one everybody pays
So have it spent before you get the bill, there's no time to kill

If we'd known ten years ago today would be ten years from now
Would we spend tomorrow's yesterdays and make it last somehow
Or lead the cheers in someone else's game and never learn to play
And see the rules of thumb are all the same that measure every day
The grass is green on both sides of the hill, there's no time to kill

No time to kill, even I've said it, and probably always will
But I can look ahead and see that time ain't standin' still
No time to kill but time to change the kind of hurry I've been in
And quit this work and worry lookin' back at where I've been
If you don't look ahead nobody will, there's no time to kill

If we had an hour glass to watch each one go by
Or a bell to mark each one to pass, we'd see just how they fly
Would we escalate the value to be worth its weight in gold
Or would we never know the fortunes that we had 'til we grow old
And do we just keep killin' time until there's no time to kill

No time to kill, even I've said it and probably always will
But I can look ahead and see that time ain't standin' still
No time to kill but time to change the kind of hurry I've been in
And quit this work and worry lookin' back at where I've been
If you don't look ahead nobody will, there's no time to kill

No time to kill, even I've said it and probably always will
But I can look ahead and see that time ain't standin' still
No time to kill but time to change the kind of hurry I've been in
And quit this work and worry lookin' back at where I've been
If you don't look ahead nobody will, there's no time to kill

No time to kill
No time to kill
No time to kill Clint Black No Time To Kill Lyrics....

Thursday, July 4, 2013

Happy 4th of July!!!! And things Keep Me Busy!

Lots going on lately! Of course wishing everyone a Happy and Safe 4th of July! Kind of wished I would have packed up my Mom and went to the Casino for the day. But, I figure between all of the traffic through Dallas, and the crowd at the Casino, Sunday will more than likely be a much better day! Just found out we are having a Class Reunion this Fall! I am so thrilled. I am trying to write "lyrics" or a poem for it. Right now it sounds more like lyrics in my head, but with mine you never know...LOL!  I missed the last one. I just did not get the information in time, and missed it by about a week. So, I am going to try and be involved with this one and help out with what I can! We have new baby robins! They are in our tree right in the front yard and we have been observing them and their parents. It has just fascinated me to no end to watch them. The way they do things, protect them, others are building nests now, and I just am amazed. I also saw a hummingbird yesterday finally!!!! After my daughter suggested some flowering bushes, and I picked up a few others and got them planted, then all of a sudden yesterday we saw a couple of them right by our feeders! So, I got up early and cleaned the feeders and refilled them with new food! I am so hoping they stay around for the summer, but I have come to realize they can be quite fickle. Anyway, just lots of stuff going on... do hope to take Mom to either Choctaw or Winstar Sunday... I have been having issues with pain and weakness again in my legs... in the front and back of my calves, plus more pain and stiffness in my feet, ankles, wrists and hands. I see my Rheumatologist I think in August, thank goodness. Rather than his "PA" I get to see him as far as I know. That will be a much better scenario. I just do not care for her at all... she is just one of those that blows you off, and does not give a darned what you want to say, etc... and my Rheumy is SO incredible! So, it will be nice to get to see him... it has been over 6 months since I got to.  more to come... I am just doing stuff around the house today, cooked a little, messing with my drums and keyboard... or I may not do a thing but sit on my butt!!! LOL!!!:) Hugs to All, Rhia

Wednesday, July 3, 2013

Lots on My Mind but Nothing Coming To Fruition

I have been "absentee" lately. I mean as of being here to write. Not that I have not written something, at least in my head. I have had a really difficult week or so. Between being upset over Mom and I not going to the Casino on Sunday, which I feel was my own fault, to just my own inner feelings and emotions... add in hot weather, errands, the endless battle of medications, doctors, pharmacies, insurance and people who just cannot or will not do their jobs, & being chronically ill... ah, and of course the importance of everything that is so tragic around our globe, it is hard to NOT be disgusted, disenchanted, and disconnected. I think that might be a great word to describe how I've felt the last couple of weeks... disconnected.
Due to what should have been "stormy weather" (sounds like the name of a song) :)   ... that caused me to decide to postpone our girls trip on Sunday, to the point that it did NOT rain, and the sun was shining beautifully all day, I got pissed at myself. I have to wonder if that was just an excuse not to go. If I was trying to get out of going with my Mom to the casino, why did I? I love going! I love that day trip, whether all three of us go, or just "the girls" as I say when my Mom and I go alone, because Jim stays home to work, I always enjoy going. We do NOT spend a great deal of money. It is more about getting out, being together, enjoying a "huge" McDonald's Dollar Menu breakfast along the way, and then just the excitement of watching people, seeing how they play, doing a little playing ourselves, and being out of the house. So, "money" per se, is really not it. Lord knows I am in this house, or may I say at home just about all the time. Other than running errands, the market, or the occasion hated trip to Wally World, I am at this house, either out or in. Am I just getting old? Again I know I am slower than ever. I have tried in every way to figure out a way to get dressed quicker, get my make up and hair done... and be out the door in less that over 3 hours. I was not like that just a few years ago... now I just have to almost get out of the shower, put some gel in my hair, while it air dries, throw clothes and my sandals on, if I am really with it, my watch, earrings and ankle bracelet, and lately not even the usual necklace gets put on. I have this thing now that I question my motivation... or may I day "What motivation?" !!! Now I think to myself "Why the necklace or makeup". I am just going to Wally World, or to pay the water bill. It is not like I will run into the President of the United States while in down town Ennis!!!
I still run flat into my own wall though, no matter which direction I turn. I try and tell myself that I will "feel better" if I do, this, that or the other. If I "dress up" (by dress up I mean put my makeup on, fix my hair up, and so forth) I will feel better. Well, I am here to tell you when chronic pain and illness falls upon you, dressing up does not necessarily mean you will have a better emotional time at that moment. It may, don't get me wrong. Of course I never make a "run to the store" and not at least be showered, looking presentable. I can say that is more than I see in our local markets and our local Wally World. I just saw a "poll" the other day about what you "can't stand" as far as what happens in the market. Out of the top ten things, a woman in her flannel pajamas and a night shirt on.  I must say that is almost my number one peeve! BAD customer service of course is the first one, bur right behind that is others that do not have the gumption to at least put on shorts or jeans and a shirt. Good Lord, even at my worst, I think the ONLY time I have been out in public with flannels bottoms on is a the emergency room, or dog sick at my doctors office.
I am not sure exactly what has drawn me into the inner place of really not wanting to do any one thing. Usually I love baking, or of course writing. I love playing the drums, or the keyboard. I absolutely love being out side during the sunny days of summer. Even that with all of our new bushes and flowers does not really thrill me either.
If anyone did not know me well, and came around, they would swear I was depressed. I guess in a way you could call it somewhat depressed. But, I feel I am not that much in a depressive state, as much as I am in a state of trying to not think I am totally disillusioned with everything.
What have a truly accomplished in my life time? Have I or am I on the path I am supposed to follow to get me where I need to be? At 53, I get to thinking about this 35 YEARS!!!! yes 35 YEARS!!! since I graduated from High School! That seems totally impossible. In many ways it feels like was just a few weeks ago. I can still remember walking those stairs in the old High School Building, that did not even have an elevator to my knowledge. There were 3 floors, and then a basement floor. The 2nd floor contained the main office and the library. I always loved the library. It faced the back of the building, but it still had good view. I remember the building where journalism and our school paper was. I remember many of my class rooms, and my teachers.
As we get ready to have our 35th reunion, I have had many things rushing through my mind. How many of us stayed right here, yet there were lots of us that scattered to the 4 winds. From a vet, to several who are Aggies, foot ball coaches, Mom's and Dad's, nurses doctors, some took over their own family business. Some building homes, other artists, bankers, and just every day folks that can also remember well those high school years.
Some I am sure have had the journey of their lives such as mine. I traveled to several places along the way since I left Ennis High in November 1977. From marrying 3 days later, to working at Ennis Business Forms. Then to being a single Mom, and working in Dallas at a bank. Then to a bank here back home, going to college part time, remarried and having my daughter, a 2nd child. After that time seemed to really go by fast. Kids seem to keep you young, and then one day you wake up, the house is quiet and their gone. I made a move to California for awhile, and in fact was their another short time just a few years ago, before moving back to my home town. Oddly enough I made a "full circle" through the journey of my life. Getting to experience Seattle, which was just incredible for 5 years, 2 different places in CA, Lancaster and San Pedro, both were just wonderful. Austin was also a wonderful city. It was beautiful, and big enough, with being too huge. I got to spend only a week in Florida, but wow talk about a week that truly remained one of the high lights of my life. Hollywood Florida, has to be one of the most incredible places in the entire US! It was just magnificent and I would have given my eye teeth to live in the house we looked at. Yet, for reasons we often do not understand, it was not meant for us to be there. So, when Ennis called us back, I returned, and will probably remain here, but that is also okay. My Mom is here and she needs me, and my days of traveling and moving I feel are over. '

When I consider all that I have had the fortunate things to do, and accomplish; although some would think that is not much, I should be elated, not down in the dumps about where my life has been, gone, went, and now is. There are so manyy more times I would have loved to be on the ski slopes, or the dance floor, or had the opportunity to learn to play the drums better, the guitar better, take more art lessons, accomplish a great book that would "sell". I would have loved to flown to Europe, and seen all of the "great" places there. Germany, France, Italy, Spain, Malta, Czechoslovakia, The entire UK, and many more. Spices from all of the exotic places, and see all types of different buildings, museums, and monuments. There are still many states and things in out country I have yet to do and want to do.

 So, pieces of me are in a spot of restlessness, of wanton... of the things I have missed out in my life. Yet, just me climbing on a chair to change a light bulb can be a little "iffy" now.

As you celebrate this holiday and you look around at your life, your family, your friends, kids, you can also give a shot at thinking about all that life has brought to you... those things that you may not regret, but wished you still had the chance to do.... remember you still just might... some sky dive at 80, some deep sea dive at 75, their are still lots of great years ahead of you....  so never let the fear of living keep you from doing just that.... living... 





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....