Friday, March 1, 2013

Can't Allow Budget Cuts to Interfere with Lupus Research

Here is an article and the place you can go to send a letter to your Senators and your Congress People to let them know you do NOT want funds cut for further Lupus Research. WE already are in much more need of funds to move forward, tus we surely do not need cuts.

http://lupusresearchinstitute.org/lupus-news/discoveries/13/02/27/help-lri-petition-against-federal-budget-cuts-research-diseases-lupu

Monday, February 25, 2013

Totally Insane on Monday - The wheels in my brain go round....

It seems as if nothing feel "right" or seems right with me anymore. I have been dealing with this ridiculous and serve odd pain in my legs, lower back, feet, etc for weeks and weeks. Nothing, and I mean nothing has seemed to completely relieve it. We have put doctors heads together, our heads together. researched everything we can find, even completely emptied the pain pump a week ago last Friday, refilled it, and I had absolutely no change for days. I have been on strong oral pain meds to go along with the pump, that "appears" in itself to be working. That does NOT mean that there is not an issue with the catheter portion being pulled out of my spine, or kinked in some way, causing issues, but as far as the "mechanical" workings of the pump, it seems to be okay. I have now been to my pain specialists, my PCP twice, my Rheumatologist, along with also emailing him (by the way I got an absolutely awesome email back from him on Saturday am that make my weekend, after having such a heck of a time with the PA that is there in his office). I have been taking BC powder every time I can and probably more than I should. using the pain meds every time I can have another one, have Voltaren cream I can rub on my legs, which is a kind of NSAID but for the outside on the skin rather than taking it orally. I have tried warm water, standing on them, staying off of them, praying, lots of praying, and to no avail. I have already had a CT scan, and do not know the results yet. I HOPE to finally hear today, since it has been almost a week. Yet, I began to notice yesterday that it seemed there was a possibility the pain was not quite as bad. Now what I feel is more of a weakness, especially in the right leg. Once I stand on them for just a minute or so, my legs feel as if they may come out from under me. I felt several "odd" things yesterday, like rather than my legs hurting a badly, my arms, both of them from my elbows down hurt down to my wrists and fingers almost like my legs have been doing.  I seemed to have the "chills" off and on all day yesterday, but did not run a fever as far as I could tell. But, I am extremely fatigued again. That bone tired stuff I had when all of this began WEEKS AND WEEKS ago! My body just does not feel "right". Something feels "off" but I can't put my finger on what that is. I just cannot concentrate, I have absolutely no energy to do anything, and I've literally had to make myself do anything. Just before all of this began, my "New Years" list was full, and I was so looking forward to getting some of those things accomplished. Now, I feel if I have gotten off the sofa, took out the trash, made the bed, make myself do my exercises, and from there trying to keep the laundry done, groceries bought, and all of the other chores done, seem so monumentally huge,   it is difficult to think about them. I fear something bad is wrong, but then I fear they will not find anything which almost be worse that finding something to explain all that is going on. I feel on some days as if I am just going crazy. I have wanted to get this 2nd book ready to be published in May, but my motivation is all but gone lately. I have so much I wanted to accomplish, but as of now, all of that seems like a dream that is fading. Each way I turn, every time I face pn way, it seems their seems to be a stranger facing back at me. There seems to be a "red sign" flashing, telling me to turn around and try a different direction. Each one seems to be more confusing than the next. I woke up so totally exhausted this morning, yet I have to go with my Mom and find out about her echo-cardiogram. It seems there might be a little issue with a valve, which can be quite common with many people, especially as we age, some of those valves tend to allow it not to close and blood backs up the opposite way, which can cause some issues, or none depending on which it is, how much it does not close and so forth. But, I am sure whatever it is sounds minor, and there maybe nothing they do but keep an eye on it. I happen to have one also, and we just watch it, but really for now I am not to be overly concerned. I just know my Mom and since they called to tell her that Friday (I have got to have them call me for that kind of stuff, she does not understand, and she panics). So, I had talk to her on Friday evening, and explain, they just do that. Whenever tests come in, my cardiologist, whether normal tests , etc, she calls right away with answers, even if she is seeing you the next day. That is just how her routine is, which is a good thing. Rather than most of mine that don't let you know and you have to keep calling to find out what the heck is going on. Alas, I have LOTS of STUFF rolling around in my head this morning, and I feel totally torn down from all of the faith I usually have in life and things around me. So, if I seem "off" I probably am... guess I could blame it on being a Monday.... Rhia                                                           

Friday, February 22, 2013

Reaching, Reaching & more of the Unknown

I have tried my damnedest to keep the last 8 weeks or so in perspective. From the issues with the double vision, and not being able to get into another specialist until April, to the sudden onset of what I thought was the flu, it seems nothing is better. I have spent my early morning hours this morning going over in my mind the dates of when all of this last round of Lord knows what now is wrong with me began. I thought by going back over the days, the dates, what was happening at that particular time, & so forth something would suddenly dawn on me that seemed to help fit this puzzle together.
I even went back as far as just before Christmas, when Mother became down with a sudden bout of shortness of breath, that landed her in the hospital over night. All of that turned out fine, even though it did of course put a strain on us as far as stress goes. I know she was concerned even though the tests came back fine. I felt like since all of the tests were perfectly normal, there was not anything to be overly stressed about, but of course she was the one in the middle of it. from there of course a few days later was Christmas. There was not really any kind of stress involved there. We celebrated quietly, and in fact rather than cook on Christmas Day, we waited and cooked for New Years Weekend, and that made it almost more enjoyable. At that time, I was not feeling bad, and in fact everyone seemed well here in our homes. We did not go the the Casino as planned but the weather was not the best during that time, so we put if off waiting for better weather.
Then of course we had the news about my Mom's brother passing away on New Years Day. That came as a shock to all of us. But, he was 80, sounded like he just went to sleep in his recliner, and that was it. So, during that funeral, and the meal afterward, we got to see many relatives that we had not seen in a long time, and my Aunt, which would be Mom's only other living sibling, did get to come. But, she does have incurable cancer of the stomach. So, we do know that she is not well at all. Yet, she seems to be hanging in there, and so we keep on feeling blessed that she continues to be here with us and even though she seems a little "off" at times, which I feel is the medication, she does not complain of pain, and she rarely really complains about anything, other than the fact I know she is more than tired of the battle.
Again, though, that causes some underlying stress in our lives, but not anything new, since she has been ill now for quite a while. Our "New Year" did not start out the best, losing my Uncle, Mom's little hiccup, and then my daughter's entire family had been sick off and on with the flu and stomach virus, so of course there is some concern over them and the kids. Then comes this morning that I wake up and feel as if a tandem trailer truck had ran over me twice. My energy was totally gone, the fatigue was totally exhausting, I hurt from my toes, the bottoms of my feet to the top of my head. It seems there has not been one joint on me that is not aching and hurting, like someone just beat the holy hell out of me, and left me for the train to finish me off. I have had every kind of symptom of the flu there is. But, I have also had many of the symptoms that a Lupus or RA flare would bring on. Sore throats, swollen glands, headaches, backaches, my legs are just in insurmountable pain, deep to the bone aching pain, and a pain that feel as if I am on fire under my skin.
I have had the chills, my fingers are all split open to the point of bleeding, the bottoms of my feet hurt, I have been weak and shaky, my elbows both hurt, my right arm and hand stay cold, but my left at times seems to get warm. I am stiff all over, I am on edge, I cannot sleep, and then I am so tired in the afternoons I find myself on the sofa with the puppies watching a movie. I cannot wait for each 4 hours block of time to go by so I can have more pain medication. Which is ridiculous, since my PAIN PUMP had been working since 2010 and I have had to take virtually NO other medication other than some Sol-Medrol when I have Lupus Migraine. We have tried looking up every kind, in every way, searches for all kinds of rare illnesses you can think of. My hopes are that between all of the searches, symptoms, tests, doctors, etc... someone, SOMEWHERE, WILL FIND OUT WHAT THE HELL IS WRONG WITH ME!!!!!
Now, I have been to my PCP twice. They have done blood work, that I have NOT HEARD back on yet. I have been to my pain doctor. He has pulled all of the medication out of the pain pump, and completely refilled it, to make sure it does have the right medication in it. So, it should, and it appears to be working, as far as the pump itself. But, we do not know if the catheter is in the right position, and if it is working as it should. So, due to my symptoms being so severe in my lower back and down my legs, we did a CT scan on Tuesday. I am waiting to hear back on that. I have left a message, and have not heard from anyone as of yet. OF course, as with anything it is a "hurry up and wait" when it comes to tests. They want you to "hurry" and do them. Then they make you wait until they are damned good and ready to talk to you about them. Another interesting fact. I have ALWAYS been able to get my Radiology report from who does the CT Scan. Never have I had any issues. When I had the scan done this week I was told they can no longer "give the report" to the patient. Now what kind of a  crock of crap it that? It is MY TEST??? I should have the right to get it when I please. So, I am going to find out what that is all about. I signed a waiver even stating I should be able to get a copy, so whatever has happened about that, I do know they did a survey and 90 percent of the people said they DID want their results, they did not want to WAIT for the doctor! Just another one of those little things to irritate the crap out of us. So. that blood work, which was done two weeks ago, I still do not know I thing about, and the CT Scan results I am sure are sitting somewhere faxed over on a desk, and I can't find out about those either. In the mean time, I hurt like hell, and have to deal with the fact I DO NOT KNOW WHAT THE HELL IS WRONG!!! I have just about lost every single piece of patience I used to have. I have had more than enough of this pain, and even more than enough of being tested only to wait until someone else decides to tell me what they found or did not find. then I go to my Rheumatologist, who has been a "God Send", BUT he had to give up his private practice after 11 years now, and go to teaching, doing research, and seeing only a very limited number of patients, just so he can make a living! Now how screwed up is that. The best doctor I have been to in my entire time of doctors and as many as I have been to that are just plain BAD, here you find one that is sincere, caring, does NOT make you wait, gives you plenty of time to talk, really HEARS AND LISTENS, allows you as a patient to be a big part of your healing and illness issues, and he can't make a living due to insurance, the high cost of overhead, employees, and all of the bull crap that comes with having to have all of the malpractice insurance, plus the list I am sure goes on and on. It truly sucks. But, that is what happens, we have the good ones that can't make it. But, the ones that rook the system, that don't care, that treat us like a number, or a bunch of cattle, they put us in one door, run us through their little maze of mess, and out the other. Then send us on our merry way, with no explanation, only to want to charge us out the butt, and then do not file the insurance right. So, we spend 8 months or more trying to get them to do THEIR JOBS!!!! I have "fought the system" when it comes to the insurance companies, the Medicare mess, the doctors offices, hospitals, pharmacies... you name it, not just for my own filing and visits, but for my Mom also. It seems that NO ONE gives a damned if they do their job correctly or not. More times than I can count on my fingers on both hands have I had people in the insurance departments at medical facilities tell me, "we do not check to see if the insurance company has paid correctly, that is THE PATIENT'S JOB?!)  You mean to tell me you would rather for your facility that pays your salary get paid 200.00 on a 40,000.00 surgery, rather than check to make sure you are paid the 35,000.00 you are really owed??? then you come after the patient for their tiny part of 150.00 co-pay and want to hassle us and threatn to turn us over to a collection agency, when you were too lazy or stupid to file the claim correctly IN THE FIRST PLACE!!!! Then ask them to read the "EOB" from the insurance company!! THEY CANNOT TELL YOU WHAT IT SAYS!!! It is totally insanity!!! I know for a fact one of the surgeries I had the doctor did NOT file for the claim for well over 9 MONTHS!! after the surgery!!! Then his office tried to tell me that I owed a part I DID NOT OWE!!! I even got all of the paperwork together from the surgery, from the insurance company, set down and printed out why it was wrong, and why they needed to REFILE IT CORRECTLY IN ORDER TO GET PAID!!! And they still could not do it right!! They had sent it to the insurance under a "non-participating" doctor which was WRONG, they were, and due to that the insurance did NOT paid correctly! Then they tried to blame ME, due to their error. Literally is was 9 months to straighten it out and I don't think honestly they ever got paid on that expensive surgery correctly. You better believe when I worked in the business office of the hospital, we were RESPONSIBLE for FILING CORRECTLY!!! And we filed it again, until it was paid by the insurance right. It was MY JOB!!! But, now days they do not want to do their job, they want you to do it for them. My Moms bill for her wrist surgery is the same way. They filed it wrong, like a non-participating surgery center, thus they have NOT been paid right by the insurance. Yet they are trying to collect almost 500.00 from my MOM that SHE DOES NOT OWE!!! They told her what she owed and me also three days before the surgery, which she paid the morning of the surgery, and then they screwed it up. I have been fighting with them for at least 8 months or more, and after they promised they refiled it, I found out this week they NEVER REFILED IT AT ALL! So again they are pressuring her for money she does not owe.
The entire thing is insanity. If you are chronically ill, and have to see a doctor or have very many things done, you are just screwed. No One will do their job!!!! Okay, enough of my "SOAP BOX" FOR today!!!! I shall have more tomorrow:)  Have a good weekend, and pray I get better... I hurt like hell right now!!!!

Monday, February 18, 2013

Keeping My Fans Up to Date - A Conundrum Of Chronic Pain and Illness Issues...

I began this post a couple of days ago, more about my own personal illness and the reason I have not been here for my fans over the past several days. Yet, this morning, I begin to read the news, to find out one of our very good, and quite young country and western singers, Mindy McCready has passed away apparently from suicide. My first thought is WOW! I never realized she was having so many "personal" dilemma's in her life. I kept on reading to find out, her oldest son is living with his Grand Mother, and she had another son last year, whom it did not for sure say if his Grand Mother was caring for him also. But, being on the road as Mindy was, I would assume so. I also was not aware that the Father of her 2nd son also committed suicide not very long ago. Mindy must have fought issues with drugs, alcohol, and her own personal demons, which many of the "super stars" do. They get caught up in all of the drama, the clothes, the traveling, the living in a hotel room, eating from a bus, never really being with family much at all, and even though we think it would be an extremely wondrous, and glamorous lifestyle, many of them would tell you differently.
After all, in spite of their wonderful talents, they are "human". In many ways they are just everyday. usual people, that have bills, illness, deaths to deal with, family, children, homes, and even much more due to their fame. They never have a "life" of their "own". Often due to reporters, and news people in their faces constantly, they are never able to truly have the everyday life that many of them dream of. Don't get me wrong. I am sure for most of our "stars", that "dream style" of life IS what they choose, and it is what makes them the most content. It is a lifestyle, a job, a career, a unique challenge, whether you are an actor or actress, a writer, on screen, a producer, a singer, om Broadway, in Nashville, no matter what the venue, from Vegas to some little town in Texas, wherever your talents, your will to succeed, your scraping, climbing, having doors slammed in your face, whether you became rich and famous "very young" as a child star, or later in life after you feel you have paid many dues along the way, by hook, crook, luck, love, or however the wind blew you where you stand today, fame is your fortune. Fortune is success, and success is your life, whether you hurdled it all at once, or took baby steps along the way, it is a life style that some find truly amazing and satisfying, BUT we have also seen many BURN OUT, WE have LOST many incredibly talented men and women, and even young adults to the strings of drugs, of that "life in the fast lane", of the constant contact with drugs, with those who just want to get under your skin, your money, and take away what you have earned. thus here we are, another young Mother, a talented country singer, a beautiful woman, daughter, friend, with so many that loved her, and she is now no longer here. Within a breath's space, from life to death, she is gone. We have her wonderful songs, such as "Ten Thousand Angel's" to remember her by. That has been one of my favorite songs for a long time, yet when you really read her lyrics, especially to some of her latest music, she was reaching out through her music and asking for help it seems to me. As I read lyrics to "Scream" and "You'll Never Know", as much as we worshiped the beauty in those, she seemed to be filling in the blanks to her own private crossword puzzle of a broken heart. I hope at this moment her smile is as bright as ever, and she has crossed over that river to find "peace".

Even though we cannot "fit" into her shoes, we CAN fit into the realms of what goes along with the "loneliness" of how chronic illness makes us feel. Like those that are famous, we tend to feel isolated, alone, away from those we love and care about, and feel surrounded by a dark, black nothingness. We struggle with that black, dark pit often, or many of us do. We peer into that hole of nothing to see if we can find one iota of light shining through. If we need "light", all too often we need to "peer right into the looking glass of our own realm" and we see the brightness shining right through into our very souls.

With sadness and hopes for a bright future for her two sons, Mindy I pray you are now out of that hell that took you there,

Rhia

Friday, February 15, 2013

On Valetine's Day

If we figured the amount of roses bought, the amount of fine chocolates eaten, the incredible beauty of so many cards, thoughtful words, well wishes, of love, passion, hearts, the true meaning of what a special holiday for "lovers" adds up to we could probably fix part of the National Debt.
We are suckers for romance. Women of course are, but men, especially for this holiday are usually trying to possibly make up for the other times of the year they "forget" birthdays, or anniversaries, plus other special occasion before this one especially designed and designated to say "I Love You".
It is honestly peaceful and in pure harmony of life that I am thrilled we sit try to make this a very special way to celebrate how we feel for those who are most important in our lives.
All too often we deny ourselves, and those around the mentioning of allowing love to seep in and show the strength there is in loving someone and also being in love, to have them share their moment of showing how great that love is. After all this nation and this world has been through over the past year, even the past 4 months, we should all be telling one another how we feel. For so many young and old, rich or poor, healthy or ill, we have watched the lives of these events effect our children, our teachers, and there will forever be a making their way a little differently through what we sometimes take for granted... May we always allow "V" Day to ring in our hearts....  no matter how lousy life gets on any one day... my hopes are that we stand upon the foundation of the true and pure "goodness".