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
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Friday, March 1, 2013
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!!!!
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
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".
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".
Monday, February 11, 2013
Reaching, Scratching, Crawling, Begging, & frightened...
In my thoughts, and my feelings about this horrendous pain that I am in, along with WHY it is happening, and IF it could be the pain pump, where we go from here.......
Tomorrow afternoon seems like LIGHT YEARS AWAY!!! If it would do one bit of good I would sit down in the middle of my home right now and SCREAM, CRY, BEG, PRAY, BLEED, WHATEVER IT TOOK TO MAKE THIS FREAKING HELLISH PAIN GO AWAY!!! This is total INSANITY!!!!! I feel just horribly sick to my stomach it is so bad, and my doctor's office missed the prescription for my Zofran I asked for, for nausea when they called in my meds last week. I have just about taken all or even more than all that I can stand. This freaking is crazy. Here once again another birthday coming, and I am in hell from pain... life just is NOT fair!!!
I honestly am wondering about the entire scenario. Jim and I have been talking about it since early this am. I barely got any sleep with the pain and concern, and he did not sleep well either. We have discussed the whole thing and of course looking stuff up, there are things they do to see the "catheter" part, a fluoroscope, or possibly a CT scan to look at it. I guess an expert could see if it was in place or not, eroded, leaking, and so forth. They can also probably run a special dye in there to view the actual medication and see if it looks "crystallized". Another thing Jim mentioned is the possibility of the medication being mixed wrong. The medication starts our as a powder. It has to be mixed with certain other liquids and shaken up a certain amount of time etc to keep it from crystallizing. Well, all of that is really difficult types of math that they use a certain amount of so many liquids with a certain amount of the correct powder, which even the powder comes in different "strengths". So, if while I was there having it refilled the pharmacy at the hospital accidentally mixed up the "weaker" dose, and/or etc. it could be it is much too weak, maybe even half of what I should get. Well, that would make total sense as to why I am in such a world of hurt as I am. Also, if you research the pumps, of course failure is rare when you consider the number of people etc with them. But, it does happen. Usually it is the catheter that is an issue if anything, but the likelihood of that was rare even we felt without me getting some type of "warning" from the pump itself. Yet, they have had battery failure in some. In fact one of them was about the time mine was implanted. As I supposedly was told and found out, mine was not included in the "recall". But, it was along that time that for some reason the battery would develop a "film" on them from the body making it, and it would stop them from working. Like I said, they have every kind of set up in place to let you know if you have a failed pump BUT as before Murphy's Law for me, plus the fact, that as incredible as these are, they are "man-made". They are also computers. We know all too well computers can have their own "mind". They can do all kinds of very strange things to make you think they are almost human in themselves. They can be obstinate, temperamental, contrary, and down right stubborn. They can pull some stuff you would never think could happen, thus it is a computerized machine. Even at that, and even if they find out it is my pump, I will say over all, I think I will with no doubt continue to have one. My life went so much back to whatever somewhat "better" and half way normal was after the pump was put in, that I cannot see myself even attempting to try and go back on regular oral medications. In the first place, there is no way they could give me enough to keep me comfortable without zoning me completely to oblivion. So, the situation is even if there is an issue with it, even thought I DO NOT want another surgery, especially this week on my birthday, I feel the pump is the way to stay for my personal situation. I see the doctor in Dallas at 2:30 this afternoon. So, keep me in your hearts, spirits and continued prayers... I so am humbled by everyone's blessings....
UPDATE 2/12/2013
Well, here is the deal right now. I saw my pain specialist yesterday FINALLY at about 3:00 pm in Dallas. He was in fact EXTREMELY CONCERNED! So, that in itself was a good thing. I knew he was taking me very seriously, and he will search until we resolve this whatever is going on. In the first place, he knows me so well, he knows I must be in one hell of a shape in pain to come to the office like that. My pump has been a God Send, and for me to suddenly develop this severe of pain etc. he said he knows something is not right. He checked the pump and talked to me extensively as to how, when, etc.. this began. We talked about the last refill which was early January. He checked the pump with his computer that reads it, and it shows that the pump "is working" supposedly. It did not give him any errors, and showed that the medication amount was "going down" properly as it should. BUT, like we said, that may not mean anything, and that it might not be doing that. That is just what he initially saw. From there we discussed the possibility that the medication he refilled it with was wrong in January. Since this all seemed to come around about the same time, it is a huge coincidence, that it would do that. So, his 2nd thought is that either there is "Nothing" in the solution, and the pharmacy at the hospital where it is mixed screwed up, and I am basically not getting medication or much at all. Which is dangerous as hell to be blunt. 3rd I could have something totally "new" going on. He said of course due to the "viral" type of symptoms I had weeks back feeling like I had a very bad case of the "flu" may be something that set off other issues, and something could be very "haywire" between some kind of viral syndrome, the Lupus, RA, etc... reeking havoc with my body, that might cause a huge more amount of pain that I usually have. Then since I do have osteoporosis, DDD, etc... I may have something that went wrong in my lower back suddenly that I would not have even known, like I could have some vertebra that suddenly "collapsed" onto one another pinching the nerves and would cause this kind of extremely acute pain. I show signs of weakness especially in my right leg. SO, he is ordering a CT scan of my lower back to make sure we are not dealing with something totally new, and also an EMG of my right leg. Then he is going to pull out all of the medication that is in the pump, and refill it with new stuff on Friday. Of course that will tell us a couple of things, whether the pump is working or not. And more importantly, if the "medication" is what it is supposed to be or not etc. If I begin to see relief after about 8 to 12 hours or so, then we know something was WRONG with the solution that came from the hospital pharmacy where he fills it. Or if nothing changes, then we either have a catheter or pump issue that is not registering, OR we do have a new situation. (I DO NOT want the last for sure) or honestly the 2nd, because if the pump has an issue that means surgery to replace it all. So, we have to go through all of that, and guess what, Friday is my Birthday!!! So here I am having to deal with this on Valentine's Day and my birthday week... which sucks. Also, and this was important, he gave me oral very strong pain meds to try and "calm" down the horrid pain, as much as he can, because we do not know if I am getting some, not getting any etc... thus he gave me an immediate action type of high powered pain pill that I can actually take every 5 hours to help me until we can get to the bottom of this. I am kind of fearful of it, just due to I already run a lower blood pressure and heart rate, but he says due to the extreme type of acute pain I am in, I will be fine taking them, I just might be a little "goofy"... well hell I am already goofy, so what is the difference about that one. Anyway, there is all of it in a nut shell. I took a pill late night when we got them, and I did notice what I thought was a tiny bit of relief. Now I did not sleep worth a crap, but neither did Jim. We are both so totally stressed about all of this, sleep is just almost not possible but to dose off for a little while or so. I am in such appreciation to everyone, and keep my Mom in your prayers also. She is VERY UPSET over what I am going through, and she was in sobbing tears over the phone when I called her yesterday to tell her what was going on. So, I fear I am harming her health, and I feel so terrible that here I am, supposed to be taking care of and worrying about my Mom, and instead here she is so worried and concerned over me. So, let your prayers shine down on all of us.... :) Hugs, Rhia
Tomorrow afternoon seems like LIGHT YEARS AWAY!!! If it would do one bit of good I would sit down in the middle of my home right now and SCREAM, CRY, BEG, PRAY, BLEED, WHATEVER IT TOOK TO MAKE THIS FREAKING HELLISH PAIN GO AWAY!!! This is total INSANITY!!!!! I feel just horribly sick to my stomach it is so bad, and my doctor's office missed the prescription for my Zofran I asked for, for nausea when they called in my meds last week. I have just about taken all or even more than all that I can stand. This freaking is crazy. Here once again another birthday coming, and I am in hell from pain... life just is NOT fair!!!
I honestly am wondering about the entire scenario. Jim and I have been talking about it since early this am. I barely got any sleep with the pain and concern, and he did not sleep well either. We have discussed the whole thing and of course looking stuff up, there are things they do to see the "catheter" part, a fluoroscope, or possibly a CT scan to look at it. I guess an expert could see if it was in place or not, eroded, leaking, and so forth. They can also probably run a special dye in there to view the actual medication and see if it looks "crystallized". Another thing Jim mentioned is the possibility of the medication being mixed wrong. The medication starts our as a powder. It has to be mixed with certain other liquids and shaken up a certain amount of time etc to keep it from crystallizing. Well, all of that is really difficult types of math that they use a certain amount of so many liquids with a certain amount of the correct powder, which even the powder comes in different "strengths". So, if while I was there having it refilled the pharmacy at the hospital accidentally mixed up the "weaker" dose, and/or etc. it could be it is much too weak, maybe even half of what I should get. Well, that would make total sense as to why I am in such a world of hurt as I am. Also, if you research the pumps, of course failure is rare when you consider the number of people etc with them. But, it does happen. Usually it is the catheter that is an issue if anything, but the likelihood of that was rare even we felt without me getting some type of "warning" from the pump itself. Yet, they have had battery failure in some. In fact one of them was about the time mine was implanted. As I supposedly was told and found out, mine was not included in the "recall". But, it was along that time that for some reason the battery would develop a "film" on them from the body making it, and it would stop them from working. Like I said, they have every kind of set up in place to let you know if you have a failed pump BUT as before Murphy's Law for me, plus the fact, that as incredible as these are, they are "man-made". They are also computers. We know all too well computers can have their own "mind". They can do all kinds of very strange things to make you think they are almost human in themselves. They can be obstinate, temperamental, contrary, and down right stubborn. They can pull some stuff you would never think could happen, thus it is a computerized machine. Even at that, and even if they find out it is my pump, I will say over all, I think I will with no doubt continue to have one. My life went so much back to whatever somewhat "better" and half way normal was after the pump was put in, that I cannot see myself even attempting to try and go back on regular oral medications. In the first place, there is no way they could give me enough to keep me comfortable without zoning me completely to oblivion. So, the situation is even if there is an issue with it, even thought I DO NOT want another surgery, especially this week on my birthday, I feel the pump is the way to stay for my personal situation. I see the doctor in Dallas at 2:30 this afternoon. So, keep me in your hearts, spirits and continued prayers... I so am humbled by everyone's blessings....
UPDATE 2/12/2013
Well, here is the deal right now. I saw my pain specialist yesterday FINALLY at about 3:00 pm in Dallas. He was in fact EXTREMELY CONCERNED! So, that in itself was a good thing. I knew he was taking me very seriously, and he will search until we resolve this whatever is going on. In the first place, he knows me so well, he knows I must be in one hell of a shape in pain to come to the office like that. My pump has been a God Send, and for me to suddenly develop this severe of pain etc. he said he knows something is not right. He checked the pump and talked to me extensively as to how, when, etc.. this began. We talked about the last refill which was early January. He checked the pump with his computer that reads it, and it shows that the pump "is working" supposedly. It did not give him any errors, and showed that the medication amount was "going down" properly as it should. BUT, like we said, that may not mean anything, and that it might not be doing that. That is just what he initially saw. From there we discussed the possibility that the medication he refilled it with was wrong in January. Since this all seemed to come around about the same time, it is a huge coincidence, that it would do that. So, his 2nd thought is that either there is "Nothing" in the solution, and the pharmacy at the hospital where it is mixed screwed up, and I am basically not getting medication or much at all. Which is dangerous as hell to be blunt. 3rd I could have something totally "new" going on. He said of course due to the "viral" type of symptoms I had weeks back feeling like I had a very bad case of the "flu" may be something that set off other issues, and something could be very "haywire" between some kind of viral syndrome, the Lupus, RA, etc... reeking havoc with my body, that might cause a huge more amount of pain that I usually have. Then since I do have osteoporosis, DDD, etc... I may have something that went wrong in my lower back suddenly that I would not have even known, like I could have some vertebra that suddenly "collapsed" onto one another pinching the nerves and would cause this kind of extremely acute pain. I show signs of weakness especially in my right leg. SO, he is ordering a CT scan of my lower back to make sure we are not dealing with something totally new, and also an EMG of my right leg. Then he is going to pull out all of the medication that is in the pump, and refill it with new stuff on Friday. Of course that will tell us a couple of things, whether the pump is working or not. And more importantly, if the "medication" is what it is supposed to be or not etc. If I begin to see relief after about 8 to 12 hours or so, then we know something was WRONG with the solution that came from the hospital pharmacy where he fills it. Or if nothing changes, then we either have a catheter or pump issue that is not registering, OR we do have a new situation. (I DO NOT want the last for sure) or honestly the 2nd, because if the pump has an issue that means surgery to replace it all. So, we have to go through all of that, and guess what, Friday is my Birthday!!! So here I am having to deal with this on Valentine's Day and my birthday week... which sucks. Also, and this was important, he gave me oral very strong pain meds to try and "calm" down the horrid pain, as much as he can, because we do not know if I am getting some, not getting any etc... thus he gave me an immediate action type of high powered pain pill that I can actually take every 5 hours to help me until we can get to the bottom of this. I am kind of fearful of it, just due to I already run a lower blood pressure and heart rate, but he says due to the extreme type of acute pain I am in, I will be fine taking them, I just might be a little "goofy"... well hell I am already goofy, so what is the difference about that one. Anyway, there is all of it in a nut shell. I took a pill late night when we got them, and I did notice what I thought was a tiny bit of relief. Now I did not sleep worth a crap, but neither did Jim. We are both so totally stressed about all of this, sleep is just almost not possible but to dose off for a little while or so. I am in such appreciation to everyone, and keep my Mom in your prayers also. She is VERY UPSET over what I am going through, and she was in sobbing tears over the phone when I called her yesterday to tell her what was going on. So, I fear I am harming her health, and I feel so terrible that here I am, supposed to be taking care of and worrying about my Mom, and instead here she is so worried and concerned over me. So, let your prayers shine down on all of us.... :) Hugs, Rhia
Friday, February 8, 2013
Latest Research On Lupus, RA, Cancer & possibly A Treatment From LRI
I found this in my Lupus News yesterday and thought it as definitely a thrilling piece of information when it comes to a treatments for and/or a cure for Lupus, RA and possibly Cancers. Here is the URL:
http://www.breakthroughdigest.com/medical-news/immune-cell-survival-gene-key-to-better-myeloma-treatments/
Also here is the main link to the Lupus Research Institute:
They have the latest about grants, research, medications, as well as walks, volunteering and more. You can sign up to get their email newsletter to keep up to the latest.
Rhia
http://www.breakthroughdigest.com/medical-news/immune-cell-survival-gene-key-to-better-myeloma-treatments/
Also here is the main link to the Lupus Research Institute:
They have the latest about grants, research, medications, as well as walks, volunteering and more. You can sign up to get their email newsletter to keep up to the latest.
Rhia
Wednesday, February 6, 2013
Dealing With Lupus, Doctors, Symptoms, & the "Thrill" of It All...
As I began writing this very early this morning, rather than becoming a "short post" for Facebook to a few of my friends there, asking for their thoughts and prayers today, it became apparent to me, that this is a post for my blog. I am supposed to be "sharing" my walk through the destiny, the unknown, the voracity of the entire situation when it comes to dealing with Chronic Illnesses and the Pain of it all.
When I say pain, I can of course guarantee I mean "physical" pain. There would be no other way to get around the majority of these disabling illnesses than to say they cause more than just a bit of pain at times. There is much more though involved when I say "pain" as we deal with these life altering, wretched types of sickness, that plague the body, mind and the spirit, sometimes spirit being the optimal word! There maybe days, weeks or even possibly months, I go without a huge "flare" that involves a great deal of physical pain. I have been fairly fortunate up until about 9 weeks ago, to have had much relief from the physical pain due to the pain pump internally, the other RA medications I take by injection, the oral medications I take daily, plus two pills for pain I am allowed over and above it all daily, if I have a bought of "break through" pain. When I am out of a flare mode, for the most part, unless we partake in some of the extremely crazy types of weather we have been having this past couple of months, the pain stays at bay enough that I can deal with it. Do NOT get me WRONG, though! PAIN never GOES COMPLETELY AWAY! You can find your place hopefully in the ordeal of medications, treatments, exercises, and taking care of yourself that pain can be manipulated down to a manageable level. But, for the most part of my life, I have some type of physical pain daily. It may not even be enough to mention, but under neath it all, it lies waiting, ready to pounce, and drag you around like a mountain lion on a goat. It is never more than an arms length away, and any of us that can say differently are the extremely lucky ones. I feel I am very fortunate because I had mine under control for about 4 years. As I said, I still have bad flares, I still have some severe pain, enough to send me screaming into the night at times, but I have had to learn to deal with it, and make peace with it, just to survive mentally.
Yet, when it comes to the emotional burdens, the toil the mental anguish these illnesses take upon us, then you are opening a whole new can of hell at times. As the physical toll of pain takes you under, the mental portion just becomes almost too much to bear. It is a vicious circle, that over and over again, collides into each other, bearing your soul, to what I feel sometimes is like pouring acid on a marshmallow. You cannot avoid it, you can as much as possible deal with it, but it is going to put you on the couch, in the bed, in the hospital, at the doctor, something, sometimes, when you least expect it.
That is some of what I am dealing with now. The physical pain is horrendous these days. It has been, and not just for myself but for many others suffering these straight jacket types of illnesses.. in other words, It is a wonder we are not in straight jackets at times. The weather extremes and the craziness of it all has not helped whatsoever. That truly makes it terrible on the bones, joints, any kind of illness like arthritis, RA, or any that effect those elements of the body. Nerves seem to become inflamed. and honestly, any type of inflammatory process that is in the body tends to be much worse during the high humidity, dramatic changes of pressure, large fronts that come in and hit to make things go from hot or cold to the opposite quickly, and so forth. Those with osteoarthritis, which is as painful as hell also, tends to act up with dramatic weather changes also. Migraine headaches, and so forth. So no wonder if you already have "connective tissue" issues, then the inflammation is going to be painful, stiff, swollen, feverish, and hard to put up with. When that cycle begins and you have no relief from it, it takes its toll on your entire existence. Your body, your mind, your stamina, your attitude, everything is effected, and usually not in a good way. o, as I go on to post the bottom of this, which was what I put on my FB page asking for friends to keep me in their minds and prayers today, I pray you will follow suit if possible, and say a prayer for me, as I delve into the realms of hopefully finding out at least partially what the heck is happening to make me much worse right now. Thanks for all that read and "listen". Please reply!!! I would LOVE to HEAR YOUR THOUGHTS! Rhia
I am not sure to be thrilled this day is FINALLY HERE! Maybe I should dread it??!! My several month follow up is finally here today at noon with my PCP, who is also honestly my primary doctor that takes care of the Lupus end of my illnesses. He "Found" the Lupus issues, with careful listening of symptoms, and then he did all of the initial blood work that found the high ANA levels, and so forth to indicate autoimmune issues. For that I am grateful in many ways, that the "hunt" for years was over with, yet it has really been an uphill epic war on my body, spirit. and life ever since. From every physician on the Earth, to every symptom, all of the surgeries, complications, then to throw RA. Sjogren's, DJD, DDD, and the entire gamut of stuff "wrong", I truly am a complicated patient. I realize how fortunate I am to have him as a doctor that really is taking care of me as much as he does. All too often, especially those of us with extremely complicated health issues, and rare disorders, get kind of "kicked" to the curb, because I think doctors are frightened of us, mainly due to the amount of time we take up, and then having to watch so much that can happen to us quickly. As I have written down a very LONG LIST of things to discuss with him today, I realized that even my Rheumatologist, does not really "deal" with the other AI illnesses, not even the Lupus. My Rheumatologist is more on the RA side of it, and takes care of that portion of my illness. My PCP had already gotten my meds kind of in order, had my case kind of going all on the Lupus end. He just felt he was not as good on the portion of the latest RA meds, like Humira, Remicade, etc, and those that require injections or infusions. I am not sure I can even have any type of infusion in my home town, and plan to ask today. My issues are many this time. It seems since before Xmas, I began to either have a flare and the "flu" all at once, or they were pretty close together. Plus I had the added stress of the holidays, Mom's ordeal there just before Xmas, the her brother passing away, and I then got a kidney infection, and I think I probably put off going to my doctor way too long, even after I knew I may have an infection. My wide range of symptoms, and some of them also either new or much worse is nuts. My list is pages long, (small notebook pages) yet pages, some that are really upsetting me. So, since this appointment was originally set for this past Monday, and my doctor had to change because of his schedule, I pray they have given me a decent amount of time today. I have lots to discuss with him, and I intend on not being rushed out of the office, before I hope to have some answers, or at least some suggestions on things we can do, not do, change, etc. From this whole weight thing, not sure about that (as I have speculated, it could be medication/illness, but I just cannot fathom I would be putting on any weight due to my diet and exercising daily), to now "high blood sugar" issues that just reared their ugly head late last week, to worsening stiffness, pain, fatigue, all as if my medication from RA meds to this pain pump has just "quick working". My legs hurt constantly, my fingers and heels splitting open, my "Lupus Mask" worse, fatigue has been through the roof at times, and you name it, it has either gotten worse, or has began, and I had not had it before. The Double Vision issues, honestly are worse. ONLY when I sit down, get my head still, like to watch TV, but non the less, it is there, and not better. This other eye specialist could not see me until APRIL 4th!, and I made the appointment in November last year!!! IT is nuts. I do see my Rheumatologist next week, but with his sudden extreme changes in going into a "teaching" facility, only see patients part time, and doing research, his time is not what it was when he had his own office, and a staff that had been with him for 11 years. When he was there, patients were definitely priority, he took all the time we needed, he talked, he taught, he discussed, he listened.. He is still the best Rheumatologist I have ever seen as of yet, but due to his changes in his own practice and life, things also changed for us it appears as patients. Now I give him this, last time I went about 4 months ago, he had just moved, just started the research/teaching stuff, had an entire new staff, entire new office, building etc. So, I felt he was probably a tad bit out of his element still, and so was I as a patient. I was accustomed to the other way we did things, and it was much different at the new office for us also. Plus, you have to take the appointments you can get with him. Due to his limitations on seeing patients now (I was very lucky to even get to continue to see him honestly), sometimes it will be longer between visits, and trying to get messages to him could be different. Although I have had to call once since he moved, and I did get a call back quickly from the nurse, but it is just "different". All in all, what I am trying to spit out, or write out I guess, is that I am in a conundrum of emotions this morning. I am in dread, in fear, in relief, am not looking forward to this, am glad to hopefully get some answers, find some relief, and so forth. My mind and my body have ran the entire globe of mental, physical and emotional races in the past couple of days, and I am all over the board with concern, and hopefully some kind of relief. I fear some of this, I fear the answers, I fear NOT getting the answers... etc, and so on. SO, once again, I ask, I beg of each of you that read this to take mercy upon me today and pray that I get some kind of relief in all ways. I NEED answers, I need to get rid of some of this physical pain and fatigue. I need to KNOW no matter what it is WHAT THE HELL IS WRONG, if we can figure it out! I have researched everything I can think of to see if I can provide further insight as to what my symptoms might mean, and I hope my LIST will help somewhat. I do KNOW that if any DOCTOR can figure this out, or at least part of it, and then where to go from there, my PCP can. Bless his heart, he is an Angel send from Heaven for sure. So, wish me luck, keep me in your prayers, and know I am so very appreciative of all of you and your support....
Thursday Feb 7th 2013
So, here is the outcome from yesterday's journey to the doctor... I thought I would share. Still waiting on blood work, and so forth but at least I feel I got some things answered, or at least headed in the right direction...
I know for myself, I often find it difficult to "gripe, whine, fuss and moan" here on the group. I guess I know there are so many of us in the same boat, and I hate to be a negative voice when I know we are trying to deal with pain, fatigue, illness and life, and try to get something positive out of this. Yet, I also have found that I can't just hide all of the bad stuff with my head in the sand, and not say something about all of that part also. It honestly has been an extremely difficult 8 weeks or so on myself, my husband and my Mom. All of those things, including the illness also effect us. Even my doctor yesterday, bless his heart, did not know about much of many of my latest issues, because rather than come and go to the office with a "same day" trip for several of these, I wanted to wait until I could have him "to myself" for a regular office visit. I knew I could then "pin him" down for a total visit, not just a PA (even though his PA's are extremely good), I knew he needed to hear a great deal of this directly from me. He was the one that began this "journey" with me first with his diagnosis of the Lupus, and so from day one, he has been with me through it all. He was of course just as mindful, compassionate, empathic, he listened, he discussed, he suggested, and he did all of the things we both felt maybe necessary to find out what is going on with me. He felt a severe flare of course is some of it. The double vision, he still thinks could be a "muscle" issue with my right eye, but wants me to let him know how a 2nd dose of corticosteroid that they gave me yesterday by injection effects it, if any. There is still a possibility I could have that Giant Cell Arteritis, and the prednisone, "hid" it basically in the biopsy. So, if anything like that was going on a very large dose like they gave me yesterday might really reverse the symptoms quickly. That is what they do for it anyway. Give you a very high dose of prednisone, but usually for a long length of time. Of course that is the other issue, the weight, and he feels part medication maybe, but could be Diabetes, which is also a huge possibility due to prednisone (odd how that drug is a miracle medication and the devil itself all at the same time). Plus my history, Dad had Diabetes, but late in life, thus I had not given it much thought until lately with the symptoms. Same also antibiotics can make blood sugar act up also, and I started those when that all happened, so could be another "link" to the chain of crap going on with me. He did do blood work. He took 4 tubes of blood. I had not really eaten anything, but I had creamer in my coffee, so doing a blood sugar testing probably would not do any good. But, he said we would look at that when this other comes back. He did screen my glucose levels, and did several other tests, so that will help find out whatever, if anything I hope is going on. Anyway, He is sending me to a neurologist quicker than waiting on that eye neuro specialist in April. He said we may be just not aiming at the right spot, but putting it off till April since it is worse is not what he wants to do. So, this is one way to check out to see if it has something more neurological, or if it is more eye, muscle etc related. LOL, fortunately I was his last patient before lunch. Good thing. My list was long, and he was not getting out of that room until I asked it all. He is really a blessing, and I am so glad he is right here only a few blocks away. He had already saved my life once, literally when I got so ill in 2010. I think without him I may be dead honestly.
SATURDAY FEBRUARY 9TH, 2013
LATEST INFORMATION AND UPDATE ON MY ISSUES WITH ILLNESS AND SEVERE PAIN...
To make sense of all of this post below, I will update you a little on my situation. The severe pain in my lower back, legs, ankles, severe headache, and just feeling like sitting down and kicking, crying and screaming has gotten worse. I have not slept now for very long at a time the past three nights. I did finally decide after going over everything in the world both myself and my husband can think of, from running the gamut of possible bone cancer, Leukemia, Diabetic Neuropathy, Kidney Stones (still wondering on that one), and of course worsened flares of Lupus and/or RA, that another possibility was that my internally implanted pain pump device has somehow either slowed down, or is starting and stopping, etc... to cause me to at times be without much of the medication it is supposed to give me all the time in a steady tiny amount. Of course that would put me in a HUGE WORLD OF EXTREME PAIN, along with make me feel some of the other things that are going along with it. Well, I did my research, of course wondering if there has been times that these pumps some how malfunction, etc. and they do NOT warn like they are supposed to. Of course I have found several occasions that in fact it has happened. They are definitely designed with all kinds of fail safes, warnings etc, but they are machines, computers, they are "Man made", and anyone knows that a computer can do strange things, almost "human like", at times.
So, after reading that it is a possibly, although slim, still for me (MURPHY'S LAW) always, things like them NOT beeping, ticking, etc happen, batteries for some reason quit way early, the medication can "crystallize" and stop up the catheter, even infection, catheter just may be pinched, I mean there can be a number of things cause this issue, and I also have what is called a hand held device "PTM" where I can wirelessly hold it to the pump, and it does readings, I can also give myself an actual "bolus" (additional tiny amount) of scheduled medication twice daily, etc. So, this machine if something is wrong, SHOULD give some type of error message, but so far, nothing. "I" am not "ticking"... probably good thing if I decided to go somewhere... they might think I am some kind of "bomb" dammit... and this device is not showing an issue. So, I did put a call into my pain specialist on Thursday and left a very long, detailed voice mail for the main nurse that helps him with these pumps, and she is very aware of my situation, and knows if I am calling with something like this, I feel there could really be something very wrong. They know if I call, I am very concerned, because otherwise unless it is time to refill the pump, they do not hear from me at all. Thus, I knew my doctor did surgeries on Fridays. He is only in the office half a day on Fridays, and I was not sure I would even hear back at all. It did not dawn on me about the pump (even though I had been kind of "teasing" saying I think my pump quit, that is what it feels like, like I do not have ANY of the medication, at all, at times), until fairly late Thursday. But, As you can read below, I DID get a phone call back from this lady, who is a wonderful woman, that I know is doing and did do all she could yesterday, and she would have called me to let me know something different had there been something else my doctor or my person who handles my "pump" case from Medtronic say any different than I go in Monday at noon to see them. She DID say she felt like something could BE wrong. That she knows me well enough that from all that I am saying, a problem could be occurring. I was a little upset that my doctor DID NOT want to see me yesterday. But, I also knew she may not have even been able to reach him due to surgery until very late yesterday, if at all. Thus, even the Medtronic rep may have been out of pocket etc... so I am doing all I can, to the best I can to try and not pull my legs and head off, and sit in the floor and scream... which would NOT help a thing. Thanks for listening... and I pray NO ONE goes through this again!! Whatever is wrong, I just want it found and see how we can stop this crap already!!!!
Post below continued from a Facebook post to a group I belong to with more information:
I did not get back here yesterday. I was just hurting so badly, there was no way I could even think about typing, heck even thinking for that matter. Well, as of an update. I DID GET A CALL BACK from my pain specialists head over the pain pumps etc. He was in surgery, which I knew he does surgeries on Fridays and usually is not in the office but half a day. She got my message but late Thursday rather than "earlier" as I had left it. Well, knowing that staff they did not get it to her even though I said URGENT! Now I know as far as her, it was URGENT when she heard my voice and I told her what was happening. They take me very seriously when I call in, because they know unless it is something I feel could be dire, I don't. She was in the process of getting a call into the Medtronic rep Julie (who was there when they installed the pump at the hospital and Medtronic is who made this one), to ask questions and tell her exactly what I said. I went through the entire gamut of flu, Lupus, Hell Jim and I think I could have bone cancer or something like that, have went to my PCP, have had blood work that is not back yet, have an appt with my Rheumy next Friday, on my birthday of all days!!! ALMOST a VALENTINE BABY! Anyway, She was also in the process of looking up the same things I was about the pump having issues before, and also getting a message over to my pain doctor who was in surgery. He does do surgery Fridays, and he usually refills pain pumps that need it then also. So, I know sometimes it is very late before he even is able to talk with her depending on what was happening. She had me on the top of the list. She DID AGREE that by everything I said, and the way the pain began etc... that even though she had not heard of it, that it sounded like it might be the pump, catheter something happening where at times I am not getting medication, or getting too little etc. Of course all of us know these things come with fail safe thing, but it can happen. The thing is supposed to ring, beep, tick, and then I have a hand held what they call a "PTM" monitor. I can wirelessly "talk" to the pump, so it will tell me supposedly if there was a problem. And I have checked it a 100 times, and it so far has not "warned" me as far as that stuff. Anyway, I have an appointment Monday early afternoon to see him. Of course she was trying to see if she could get him to possibly allow me more oral medication since I am in such extreme pain, or get the rep to possibly meet me and do a read out on this thing and see if there is an error they find etc. But, it may be anything or maybe it is NOT it at all. Who knows with me?????!! So, I did NOT hear back, thus I will see them first thing Monday after lunch. And if things get worse, change, etc. I will go to the ER, have them get hold of my PCP, call my pain specialist etc. Until then same thing I guess I am doing. Use what I have as I can, and try to keep myself doing whatever keeps them from putting me on this floor SCREAMING AND CRYING in pain!!! THANK GOD it so far is NOT all the time, BUT IT IS GETTING THERE. IT was more bad than good yesterday. So, that also scares me. I even thought about going to the ER and make them do a CT scan for kidney stones. Again IT almost felt like those but I also hurt all over, and have a bad headache at times also.
When I say pain, I can of course guarantee I mean "physical" pain. There would be no other way to get around the majority of these disabling illnesses than to say they cause more than just a bit of pain at times. There is much more though involved when I say "pain" as we deal with these life altering, wretched types of sickness, that plague the body, mind and the spirit, sometimes spirit being the optimal word! There maybe days, weeks or even possibly months, I go without a huge "flare" that involves a great deal of physical pain. I have been fairly fortunate up until about 9 weeks ago, to have had much relief from the physical pain due to the pain pump internally, the other RA medications I take by injection, the oral medications I take daily, plus two pills for pain I am allowed over and above it all daily, if I have a bought of "break through" pain. When I am out of a flare mode, for the most part, unless we partake in some of the extremely crazy types of weather we have been having this past couple of months, the pain stays at bay enough that I can deal with it. Do NOT get me WRONG, though! PAIN never GOES COMPLETELY AWAY! You can find your place hopefully in the ordeal of medications, treatments, exercises, and taking care of yourself that pain can be manipulated down to a manageable level. But, for the most part of my life, I have some type of physical pain daily. It may not even be enough to mention, but under neath it all, it lies waiting, ready to pounce, and drag you around like a mountain lion on a goat. It is never more than an arms length away, and any of us that can say differently are the extremely lucky ones. I feel I am very fortunate because I had mine under control for about 4 years. As I said, I still have bad flares, I still have some severe pain, enough to send me screaming into the night at times, but I have had to learn to deal with it, and make peace with it, just to survive mentally.
Yet, when it comes to the emotional burdens, the toil the mental anguish these illnesses take upon us, then you are opening a whole new can of hell at times. As the physical toll of pain takes you under, the mental portion just becomes almost too much to bear. It is a vicious circle, that over and over again, collides into each other, bearing your soul, to what I feel sometimes is like pouring acid on a marshmallow. You cannot avoid it, you can as much as possible deal with it, but it is going to put you on the couch, in the bed, in the hospital, at the doctor, something, sometimes, when you least expect it.
That is some of what I am dealing with now. The physical pain is horrendous these days. It has been, and not just for myself but for many others suffering these straight jacket types of illnesses.. in other words, It is a wonder we are not in straight jackets at times. The weather extremes and the craziness of it all has not helped whatsoever. That truly makes it terrible on the bones, joints, any kind of illness like arthritis, RA, or any that effect those elements of the body. Nerves seem to become inflamed. and honestly, any type of inflammatory process that is in the body tends to be much worse during the high humidity, dramatic changes of pressure, large fronts that come in and hit to make things go from hot or cold to the opposite quickly, and so forth. Those with osteoarthritis, which is as painful as hell also, tends to act up with dramatic weather changes also. Migraine headaches, and so forth. So no wonder if you already have "connective tissue" issues, then the inflammation is going to be painful, stiff, swollen, feverish, and hard to put up with. When that cycle begins and you have no relief from it, it takes its toll on your entire existence. Your body, your mind, your stamina, your attitude, everything is effected, and usually not in a good way. o, as I go on to post the bottom of this, which was what I put on my FB page asking for friends to keep me in their minds and prayers today, I pray you will follow suit if possible, and say a prayer for me, as I delve into the realms of hopefully finding out at least partially what the heck is happening to make me much worse right now. Thanks for all that read and "listen". Please reply!!! I would LOVE to HEAR YOUR THOUGHTS! Rhia
I am not sure to be thrilled this day is FINALLY HERE! Maybe I should dread it??!! My several month follow up is finally here today at noon with my PCP, who is also honestly my primary doctor that takes care of the Lupus end of my illnesses. He "Found" the Lupus issues, with careful listening of symptoms, and then he did all of the initial blood work that found the high ANA levels, and so forth to indicate autoimmune issues. For that I am grateful in many ways, that the "hunt" for years was over with, yet it has really been an uphill epic war on my body, spirit. and life ever since. From every physician on the Earth, to every symptom, all of the surgeries, complications, then to throw RA. Sjogren's, DJD, DDD, and the entire gamut of stuff "wrong", I truly am a complicated patient. I realize how fortunate I am to have him as a doctor that really is taking care of me as much as he does. All too often, especially those of us with extremely complicated health issues, and rare disorders, get kind of "kicked" to the curb, because I think doctors are frightened of us, mainly due to the amount of time we take up, and then having to watch so much that can happen to us quickly. As I have written down a very LONG LIST of things to discuss with him today, I realized that even my Rheumatologist, does not really "deal" with the other AI illnesses, not even the Lupus. My Rheumatologist is more on the RA side of it, and takes care of that portion of my illness. My PCP had already gotten my meds kind of in order, had my case kind of going all on the Lupus end. He just felt he was not as good on the portion of the latest RA meds, like Humira, Remicade, etc, and those that require injections or infusions. I am not sure I can even have any type of infusion in my home town, and plan to ask today. My issues are many this time. It seems since before Xmas, I began to either have a flare and the "flu" all at once, or they were pretty close together. Plus I had the added stress of the holidays, Mom's ordeal there just before Xmas, the her brother passing away, and I then got a kidney infection, and I think I probably put off going to my doctor way too long, even after I knew I may have an infection. My wide range of symptoms, and some of them also either new or much worse is nuts. My list is pages long, (small notebook pages) yet pages, some that are really upsetting me. So, since this appointment was originally set for this past Monday, and my doctor had to change because of his schedule, I pray they have given me a decent amount of time today. I have lots to discuss with him, and I intend on not being rushed out of the office, before I hope to have some answers, or at least some suggestions on things we can do, not do, change, etc. From this whole weight thing, not sure about that (as I have speculated, it could be medication/illness, but I just cannot fathom I would be putting on any weight due to my diet and exercising daily), to now "high blood sugar" issues that just reared their ugly head late last week, to worsening stiffness, pain, fatigue, all as if my medication from RA meds to this pain pump has just "quick working". My legs hurt constantly, my fingers and heels splitting open, my "Lupus Mask" worse, fatigue has been through the roof at times, and you name it, it has either gotten worse, or has began, and I had not had it before. The Double Vision issues, honestly are worse. ONLY when I sit down, get my head still, like to watch TV, but non the less, it is there, and not better. This other eye specialist could not see me until APRIL 4th!, and I made the appointment in November last year!!! IT is nuts. I do see my Rheumatologist next week, but with his sudden extreme changes in going into a "teaching" facility, only see patients part time, and doing research, his time is not what it was when he had his own office, and a staff that had been with him for 11 years. When he was there, patients were definitely priority, he took all the time we needed, he talked, he taught, he discussed, he listened.. He is still the best Rheumatologist I have ever seen as of yet, but due to his changes in his own practice and life, things also changed for us it appears as patients. Now I give him this, last time I went about 4 months ago, he had just moved, just started the research/teaching stuff, had an entire new staff, entire new office, building etc. So, I felt he was probably a tad bit out of his element still, and so was I as a patient. I was accustomed to the other way we did things, and it was much different at the new office for us also. Plus, you have to take the appointments you can get with him. Due to his limitations on seeing patients now (I was very lucky to even get to continue to see him honestly), sometimes it will be longer between visits, and trying to get messages to him could be different. Although I have had to call once since he moved, and I did get a call back quickly from the nurse, but it is just "different". All in all, what I am trying to spit out, or write out I guess, is that I am in a conundrum of emotions this morning. I am in dread, in fear, in relief, am not looking forward to this, am glad to hopefully get some answers, find some relief, and so forth. My mind and my body have ran the entire globe of mental, physical and emotional races in the past couple of days, and I am all over the board with concern, and hopefully some kind of relief. I fear some of this, I fear the answers, I fear NOT getting the answers... etc, and so on. SO, once again, I ask, I beg of each of you that read this to take mercy upon me today and pray that I get some kind of relief in all ways. I NEED answers, I need to get rid of some of this physical pain and fatigue. I need to KNOW no matter what it is WHAT THE HELL IS WRONG, if we can figure it out! I have researched everything I can think of to see if I can provide further insight as to what my symptoms might mean, and I hope my LIST will help somewhat. I do KNOW that if any DOCTOR can figure this out, or at least part of it, and then where to go from there, my PCP can. Bless his heart, he is an Angel send from Heaven for sure. So, wish me luck, keep me in your prayers, and know I am so very appreciative of all of you and your support....
Thursday Feb 7th 2013
So, here is the outcome from yesterday's journey to the doctor... I thought I would share. Still waiting on blood work, and so forth but at least I feel I got some things answered, or at least headed in the right direction...
I know for myself, I often find it difficult to "gripe, whine, fuss and moan" here on the group. I guess I know there are so many of us in the same boat, and I hate to be a negative voice when I know we are trying to deal with pain, fatigue, illness and life, and try to get something positive out of this. Yet, I also have found that I can't just hide all of the bad stuff with my head in the sand, and not say something about all of that part also. It honestly has been an extremely difficult 8 weeks or so on myself, my husband and my Mom. All of those things, including the illness also effect us. Even my doctor yesterday, bless his heart, did not know about much of many of my latest issues, because rather than come and go to the office with a "same day" trip for several of these, I wanted to wait until I could have him "to myself" for a regular office visit. I knew I could then "pin him" down for a total visit, not just a PA (even though his PA's are extremely good), I knew he needed to hear a great deal of this directly from me. He was the one that began this "journey" with me first with his diagnosis of the Lupus, and so from day one, he has been with me through it all. He was of course just as mindful, compassionate, empathic, he listened, he discussed, he suggested, and he did all of the things we both felt maybe necessary to find out what is going on with me. He felt a severe flare of course is some of it. The double vision, he still thinks could be a "muscle" issue with my right eye, but wants me to let him know how a 2nd dose of corticosteroid that they gave me yesterday by injection effects it, if any. There is still a possibility I could have that Giant Cell Arteritis, and the prednisone, "hid" it basically in the biopsy. So, if anything like that was going on a very large dose like they gave me yesterday might really reverse the symptoms quickly. That is what they do for it anyway. Give you a very high dose of prednisone, but usually for a long length of time. Of course that is the other issue, the weight, and he feels part medication maybe, but could be Diabetes, which is also a huge possibility due to prednisone (odd how that drug is a miracle medication and the devil itself all at the same time). Plus my history, Dad had Diabetes, but late in life, thus I had not given it much thought until lately with the symptoms. Same also antibiotics can make blood sugar act up also, and I started those when that all happened, so could be another "link" to the chain of crap going on with me. He did do blood work. He took 4 tubes of blood. I had not really eaten anything, but I had creamer in my coffee, so doing a blood sugar testing probably would not do any good. But, he said we would look at that when this other comes back. He did screen my glucose levels, and did several other tests, so that will help find out whatever, if anything I hope is going on. Anyway, He is sending me to a neurologist quicker than waiting on that eye neuro specialist in April. He said we may be just not aiming at the right spot, but putting it off till April since it is worse is not what he wants to do. So, this is one way to check out to see if it has something more neurological, or if it is more eye, muscle etc related. LOL, fortunately I was his last patient before lunch. Good thing. My list was long, and he was not getting out of that room until I asked it all. He is really a blessing, and I am so glad he is right here only a few blocks away. He had already saved my life once, literally when I got so ill in 2010. I think without him I may be dead honestly.
SATURDAY FEBRUARY 9TH, 2013
LATEST INFORMATION AND UPDATE ON MY ISSUES WITH ILLNESS AND SEVERE PAIN...
To make sense of all of this post below, I will update you a little on my situation. The severe pain in my lower back, legs, ankles, severe headache, and just feeling like sitting down and kicking, crying and screaming has gotten worse. I have not slept now for very long at a time the past three nights. I did finally decide after going over everything in the world both myself and my husband can think of, from running the gamut of possible bone cancer, Leukemia, Diabetic Neuropathy, Kidney Stones (still wondering on that one), and of course worsened flares of Lupus and/or RA, that another possibility was that my internally implanted pain pump device has somehow either slowed down, or is starting and stopping, etc... to cause me to at times be without much of the medication it is supposed to give me all the time in a steady tiny amount. Of course that would put me in a HUGE WORLD OF EXTREME PAIN, along with make me feel some of the other things that are going along with it. Well, I did my research, of course wondering if there has been times that these pumps some how malfunction, etc. and they do NOT warn like they are supposed to. Of course I have found several occasions that in fact it has happened. They are definitely designed with all kinds of fail safes, warnings etc, but they are machines, computers, they are "Man made", and anyone knows that a computer can do strange things, almost "human like", at times.
So, after reading that it is a possibly, although slim, still for me (MURPHY'S LAW) always, things like them NOT beeping, ticking, etc happen, batteries for some reason quit way early, the medication can "crystallize" and stop up the catheter, even infection, catheter just may be pinched, I mean there can be a number of things cause this issue, and I also have what is called a hand held device "PTM" where I can wirelessly hold it to the pump, and it does readings, I can also give myself an actual "bolus" (additional tiny amount) of scheduled medication twice daily, etc. So, this machine if something is wrong, SHOULD give some type of error message, but so far, nothing. "I" am not "ticking"... probably good thing if I decided to go somewhere... they might think I am some kind of "bomb" dammit... and this device is not showing an issue. So, I did put a call into my pain specialist on Thursday and left a very long, detailed voice mail for the main nurse that helps him with these pumps, and she is very aware of my situation, and knows if I am calling with something like this, I feel there could really be something very wrong. They know if I call, I am very concerned, because otherwise unless it is time to refill the pump, they do not hear from me at all. Thus, I knew my doctor did surgeries on Fridays. He is only in the office half a day on Fridays, and I was not sure I would even hear back at all. It did not dawn on me about the pump (even though I had been kind of "teasing" saying I think my pump quit, that is what it feels like, like I do not have ANY of the medication, at all, at times), until fairly late Thursday. But, As you can read below, I DID get a phone call back from this lady, who is a wonderful woman, that I know is doing and did do all she could yesterday, and she would have called me to let me know something different had there been something else my doctor or my person who handles my "pump" case from Medtronic say any different than I go in Monday at noon to see them. She DID say she felt like something could BE wrong. That she knows me well enough that from all that I am saying, a problem could be occurring. I was a little upset that my doctor DID NOT want to see me yesterday. But, I also knew she may not have even been able to reach him due to surgery until very late yesterday, if at all. Thus, even the Medtronic rep may have been out of pocket etc... so I am doing all I can, to the best I can to try and not pull my legs and head off, and sit in the floor and scream... which would NOT help a thing. Thanks for listening... and I pray NO ONE goes through this again!! Whatever is wrong, I just want it found and see how we can stop this crap already!!!!
Post below continued from a Facebook post to a group I belong to with more information:
I did not get back here yesterday. I was just hurting so badly, there was no way I could even think about typing, heck even thinking for that matter. Well, as of an update. I DID GET A CALL BACK from my pain specialists head over the pain pumps etc. He was in surgery, which I knew he does surgeries on Fridays and usually is not in the office but half a day. She got my message but late Thursday rather than "earlier" as I had left it. Well, knowing that staff they did not get it to her even though I said URGENT! Now I know as far as her, it was URGENT when she heard my voice and I told her what was happening. They take me very seriously when I call in, because they know unless it is something I feel could be dire, I don't. She was in the process of getting a call into the Medtronic rep Julie (who was there when they installed the pump at the hospital and Medtronic is who made this one), to ask questions and tell her exactly what I said. I went through the entire gamut of flu, Lupus, Hell Jim and I think I could have bone cancer or something like that, have went to my PCP, have had blood work that is not back yet, have an appt with my Rheumy next Friday, on my birthday of all days!!! ALMOST a VALENTINE BABY! Anyway, She was also in the process of looking up the same things I was about the pump having issues before, and also getting a message over to my pain doctor who was in surgery. He does do surgery Fridays, and he usually refills pain pumps that need it then also. So, I know sometimes it is very late before he even is able to talk with her depending on what was happening. She had me on the top of the list. She DID AGREE that by everything I said, and the way the pain began etc... that even though she had not heard of it, that it sounded like it might be the pump, catheter something happening where at times I am not getting medication, or getting too little etc. Of course all of us know these things come with fail safe thing, but it can happen. The thing is supposed to ring, beep, tick, and then I have a hand held what they call a "PTM" monitor. I can wirelessly "talk" to the pump, so it will tell me supposedly if there was a problem. And I have checked it a 100 times, and it so far has not "warned" me as far as that stuff. Anyway, I have an appointment Monday early afternoon to see him. Of course she was trying to see if she could get him to possibly allow me more oral medication since I am in such extreme pain, or get the rep to possibly meet me and do a read out on this thing and see if there is an error they find etc. But, it may be anything or maybe it is NOT it at all. Who knows with me?????!! So, I did NOT hear back, thus I will see them first thing Monday after lunch. And if things get worse, change, etc. I will go to the ER, have them get hold of my PCP, call my pain specialist etc. Until then same thing I guess I am doing. Use what I have as I can, and try to keep myself doing whatever keeps them from putting me on this floor SCREAMING AND CRYING in pain!!! THANK GOD it so far is NOT all the time, BUT IT IS GETTING THERE. IT was more bad than good yesterday. So, that also scares me. I even thought about going to the ER and make them do a CT scan for kidney stones. Again IT almost felt like those but I also hurt all over, and have a bad headache at times also.
Tuesday, February 5, 2013
Hospitals, Over Worked and Under Worked Staff, and Nightmares...
When I saw this article, I thought about all of us that are chronically ill, and how we often make our way to the hospital one way or the other for surgeries, procedures and tests. We go sometimes more than others depending on our health matters, and nursing is a scary thing now. Nurses are so over worked, under staffed, honestly I think in ways not as educated (or kept up with the latest). and NOT PAID in many places as they should be. I have witnessed it myself on several occasions, and saw mistakes that were related to especially under staffing, and NON or not good communication through the nursing staff and physicians. This article was an eye opener and brought much to the table about just how bad this is and how it will only get worse unless something is done to stop it. After are some of my comments...
Of around 600 nurses who responded to Nursing Times online poll last week, 57% described their ward or unit as sometimes or always “dangerously understaffed”. In addition, 76% said they had witnessed what they considered to be “poor” care in their ward or unit over the past 12 months – of which nearly 30% said they seen it happen regularly. One respondent said: “It is becoming more and more stressful for a nurse to nurse. Safety is always at the forefront of my mind but it is becoming increasingly difficult to ensure that all patients are kept safe while in my care.” More than half, 55%, of respondents thought nursing was facing unfair criticism over standards as a result of previous well publicised failings at Mid Staffs. But most thought that while the Francis report would have a negative effect initially, generating more criticism, it would lead to positive changes in the long run – leading to better staffing and regulation. Nursing Times asked about a number of issues raised during the inquiry such as staffing, patient safety and culture. Overall, 73% of respondents said they had completed an incident form over the past 12 months because an adverse incident, or risk of one, had occurred. Worryingly, 76% said they had not received feedback or a response after submitting the form. This reflects evidence heard by the inquiry that incident forms filled out by nurses at Mid Staffs concerned about staffing levels ended up in the bin. Of nurses working on general medical wards, 85% said the average ratio of patients per registered nurse was eight or more – of these just under half said the ratio was 10 or more patients per nurse. The Royal College of Nursing has said a ratio of eight or more patients per registered nurse is associated with patient care regularly being compromised.
In addition, 43% of those who worked on general medical wards said the ratio of registered nurses to healthcare assistants was either 50:50 or worse. The RCN recommends a ratio of 65:35 in favour of registered staff. More than 80% of respondents believed there were more “Mid Staffs” out there while, around a third were not confident they could rule out similar failings happening at their trust. More specifically, 23% said they were “at risk” of a similar situation occurring at their trust and 12% that it was already happening at their trust – either in isolated parts of the organization or right across it.
http://www.nursingtimes.net/5054462.article?referrer=e1
Here are some of my thoughts and actual situations involving staff, nursing and doctors....
This is shameful and very frightening to all of us, but especially to those that seem to have chronic issues that keep us more in the medical offices, hospitals, surgical wards, and so forth. I can attests to at least 4 situations since I began having so many surgeries, appointments, and being and in and outpatient to at least 4 TIMES since 2007 that there were BAD issues, that in fact got reported, and the hospitals in two of them did massive investigations, one in fact just went to the medical board for review. These for the most part, did NOT BEGIN with nurses really, but more about DOCTORS, lack of information to the nurses, lack of knowledge more about my particular surgeries or illnesses, but it was also due to the nurses severely being tied down to way too MANY PATIENTS EACH! There is NO WAY an INCREDIBLE NURSE CAN HANDLE THE AMOUNT OF PATIENTS I have watched them try and juggle. Not ones that have lots of medications, IV's, surgical wounds, need to be helped up, possibly need all kinds of those things that sometimes nursing assistants can do, but the poor assistants are also bogged down, and lack the time to help get people up, walking to the restroom, and so forth. There have been a few times, I did kind of blame a nurse just because she did not go back and READ orders, BUT even THEN, I know it was because she or he were probably snowed under. So, it is a push pull kind of situation. They maybe doing their undying best, BUT they can only juggle so many patients at once. I know that due to the number of society, especially elderly, those with so many chronic illnesses, earlier in life, the medical field is totally bogged, BUT we NEED TO EDUCATE, PAY VERY WELL, GIVE INCENTIVES FOR THOSE WHO DO A SUPERIOR JOB, and put in our medical offices and facilities many more qualified candidates. Thank you for the article... it is a difficult subject to discuss, but I know I am not the only one that has had issues either in the hospital or at the office of a doctor.
more in regard to nursing homes:
Nursing homes are even worse for the most part! I also hope and pray I NEVER have to send anyone there or go myself. Talk about understaffed, underpaid and they are not even trained properly. That is a situation that Medicare needs to work on as much as many of the others. The nurses at the homes are truly understaffed. They only put "qualified" for paperwork basically, and have people sometimes that are really NOT even NURSING TRAINED to handle lot of patient care. When my GrandMother fell, and went for a "temporary" stay for a broken hip, there were circumstances beyond the control of my Mom, and her two siblings, and my Grandmother could not stay by herself anymore. She also began to have dementia issues, and would leave the stove on etc... and even though Mom went there daily, and she lived only across town, it was almost impossible to care for her and know she was safe by herself. BUT honestly, I think she may have been better off at home, with home health care nurses and that type of thing. At that time the home health agencies and so forth were just beginning, so it was not something that was thought about I do not imagine as much like in my GrandMother's case, but Mom said that Granny would not be helped up to be fed, and her plate would just be sitting there, she got pneumonia from "laying" too much, they were supposed to have her up and walking, not laying all the time, half the time Mom said you could not find not one NURSE, or most of the time STAFF member. She walked in on a couple of the staff and overheard a terrible conversation about some patient they were talking horribly about in their "break room" when they were supposed to be on the floor taking care of patients. It was just nuts. One time my Mom's sister came and took my GrandMother OUT of the home for a short drive, but she did not SIGN HER OUT!!! Mom said it would have been hours and no one would have known she was even missing, but Mom happened to go by about that time to check on her. She went to her room and my Granny was GONE!! NOT one person knew where she was, and did not know my Aunt had even came in and took her. Of course my Aunt got in trouble for not signing her out, she said she did not know she had to, but it was insanity... It is just a situation that will get worse very shortly, if something is not done to get us the qualified staff, that are educated, continue to be educated, regulated, PAID well, NOT over worked, and treated also with respect.
Of around 600 nurses who responded to Nursing Times online poll last week, 57% described their ward or unit as sometimes or always “dangerously understaffed”. In addition, 76% said they had witnessed what they considered to be “poor” care in their ward or unit over the past 12 months – of which nearly 30% said they seen it happen regularly. One respondent said: “It is becoming more and more stressful for a nurse to nurse. Safety is always at the forefront of my mind but it is becoming increasingly difficult to ensure that all patients are kept safe while in my care.” More than half, 55%, of respondents thought nursing was facing unfair criticism over standards as a result of previous well publicised failings at Mid Staffs. But most thought that while the Francis report would have a negative effect initially, generating more criticism, it would lead to positive changes in the long run – leading to better staffing and regulation. Nursing Times asked about a number of issues raised during the inquiry such as staffing, patient safety and culture. Overall, 73% of respondents said they had completed an incident form over the past 12 months because an adverse incident, or risk of one, had occurred. Worryingly, 76% said they had not received feedback or a response after submitting the form. This reflects evidence heard by the inquiry that incident forms filled out by nurses at Mid Staffs concerned about staffing levels ended up in the bin. Of nurses working on general medical wards, 85% said the average ratio of patients per registered nurse was eight or more – of these just under half said the ratio was 10 or more patients per nurse. The Royal College of Nursing has said a ratio of eight or more patients per registered nurse is associated with patient care regularly being compromised.
In addition, 43% of those who worked on general medical wards said the ratio of registered nurses to healthcare assistants was either 50:50 or worse. The RCN recommends a ratio of 65:35 in favour of registered staff. More than 80% of respondents believed there were more “Mid Staffs” out there while, around a third were not confident they could rule out similar failings happening at their trust. More specifically, 23% said they were “at risk” of a similar situation occurring at their trust and 12% that it was already happening at their trust – either in isolated parts of the organization or right across it.
http://www.nursingtimes.net/5054462.article?referrer=e1
Here are some of my thoughts and actual situations involving staff, nursing and doctors....
This is shameful and very frightening to all of us, but especially to those that seem to have chronic issues that keep us more in the medical offices, hospitals, surgical wards, and so forth. I can attests to at least 4 situations since I began having so many surgeries, appointments, and being and in and outpatient to at least 4 TIMES since 2007 that there were BAD issues, that in fact got reported, and the hospitals in two of them did massive investigations, one in fact just went to the medical board for review. These for the most part, did NOT BEGIN with nurses really, but more about DOCTORS, lack of information to the nurses, lack of knowledge more about my particular surgeries or illnesses, but it was also due to the nurses severely being tied down to way too MANY PATIENTS EACH! There is NO WAY an INCREDIBLE NURSE CAN HANDLE THE AMOUNT OF PATIENTS I have watched them try and juggle. Not ones that have lots of medications, IV's, surgical wounds, need to be helped up, possibly need all kinds of those things that sometimes nursing assistants can do, but the poor assistants are also bogged down, and lack the time to help get people up, walking to the restroom, and so forth. There have been a few times, I did kind of blame a nurse just because she did not go back and READ orders, BUT even THEN, I know it was because she or he were probably snowed under. So, it is a push pull kind of situation. They maybe doing their undying best, BUT they can only juggle so many patients at once. I know that due to the number of society, especially elderly, those with so many chronic illnesses, earlier in life, the medical field is totally bogged, BUT we NEED TO EDUCATE, PAY VERY WELL, GIVE INCENTIVES FOR THOSE WHO DO A SUPERIOR JOB, and put in our medical offices and facilities many more qualified candidates. Thank you for the article... it is a difficult subject to discuss, but I know I am not the only one that has had issues either in the hospital or at the office of a doctor.
more in regard to nursing homes:
Nursing homes are even worse for the most part! I also hope and pray I NEVER have to send anyone there or go myself. Talk about understaffed, underpaid and they are not even trained properly. That is a situation that Medicare needs to work on as much as many of the others. The nurses at the homes are truly understaffed. They only put "qualified" for paperwork basically, and have people sometimes that are really NOT even NURSING TRAINED to handle lot of patient care. When my GrandMother fell, and went for a "temporary" stay for a broken hip, there were circumstances beyond the control of my Mom, and her two siblings, and my Grandmother could not stay by herself anymore. She also began to have dementia issues, and would leave the stove on etc... and even though Mom went there daily, and she lived only across town, it was almost impossible to care for her and know she was safe by herself. BUT honestly, I think she may have been better off at home, with home health care nurses and that type of thing. At that time the home health agencies and so forth were just beginning, so it was not something that was thought about I do not imagine as much like in my GrandMother's case, but Mom said that Granny would not be helped up to be fed, and her plate would just be sitting there, she got pneumonia from "laying" too much, they were supposed to have her up and walking, not laying all the time, half the time Mom said you could not find not one NURSE, or most of the time STAFF member. She walked in on a couple of the staff and overheard a terrible conversation about some patient they were talking horribly about in their "break room" when they were supposed to be on the floor taking care of patients. It was just nuts. One time my Mom's sister came and took my GrandMother OUT of the home for a short drive, but she did not SIGN HER OUT!!! Mom said it would have been hours and no one would have known she was even missing, but Mom happened to go by about that time to check on her. She went to her room and my Granny was GONE!! NOT one person knew where she was, and did not know my Aunt had even came in and took her. Of course my Aunt got in trouble for not signing her out, she said she did not know she had to, but it was insanity... It is just a situation that will get worse very shortly, if something is not done to get us the qualified staff, that are educated, continue to be educated, regulated, PAID well, NOT over worked, and treated also with respect.
Monday, February 4, 2013
"Odd" but incredible times for the Super Bowl!
What can I say but WOW!!!! What a heck of a strange Super Bowl Game!!!! The commercials were phenomenal, the teams both very extremely good! Even though of course without the Cowboys in there, we were not really "bowled over", we were with the Coaching Brothers, the Incredible, more or less "Rookie" Quarterback that just knew in the 4th grade his life was on a path (I thought that was an awesome story about his life), and then THE LIGHTS!!! Man, talk about frightening!!! I think I it would have been totally creepy moments for me, because I would half have been expecting, at any time a bomb or something horrible may have been launched to happen. We even talked about that before the game. So many people watching, and so many people attending, with eyes from all over this world, all it takes is one fool!!!! So, I have to commend the entire security staff, and everyone who did make sure all of those there were as safe as possibly could be and could enjoy the game!!! All in all, it turned out to be a fun day and evening, even though I am still under the weather some. We made low cal ranch dip and bean dip, and we had cut up veggies, did have one bag of Tostito's but they were "gluten free", and I had made some Rice Krispie treats for "dessert", and put a few dark chocolate chips in them, since those are the "healthy" ones. We were stuffed too quickly. We did not eat really all day, so by the time we sat down, both of us and the dogs were hungry. LOL. and we kind of began eating later than usual... anyway, I hope everyone had a great time, got home safe and sound, and look forward to the COWBOYS in there next year!!! I had to laugh at myself when we decided to go onto bed since the lights were taking so long, that I told Jim I thought I heard "jets scrambling" over head!!! :) We are so close to LA and our Air Force bases here are sometimes close enough they do fly over, thus I think it was a train, but it sounded like the jets going to check things out to me.
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo... -
I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...