"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
Showing posts with label "Unwell" Lyrics. Show all posts
Showing posts with label "Unwell" Lyrics. Show all posts
Sunday, August 6, 2017
The Memories of Life BEFORE Chronic Pain & Illnesse"S", thoughts of simpler times, knowing one should NEVER be "complacent" & not share your feelings, all too often "we" lose out
Tuesday, February 3, 2015
RA, Lupus, Sjogren's - New Symptoms? another Illness? and even the thrill of "Good Stress" can cause a flare...
Life continues to buzz by faster than a speeding bullet, and faster than a rocket. I hoped 2015 would begin anew, and slow down a bit to allow me a breath or two. After 2014, and ALL that I, along with family went through, my main hope for 2015 was to be more "well" physically, mentally and emotionally. I hoped life would "slow down" to a bit more of a sprint, rather than an all out marathon race, and with that would also come a bit of respit from so many bills, my teeth, Jim's accident, attorney's stuff, going to all of the doctors, and again we could see the light of dawn, after such a black ink darkness of the past year.
It's not that things have been "bad" as of yet. Although the first of every year brings another set of stressors many of us have to deal with. If you own a home or property, like myself, you probably owe property taxes by the end of January. Like many, my house insurance is usually due about that same time, along with income tax filing for many, worrying about a brand new insurance for my Mom and myself (we changed from Humana Medicare Advantage over to United HealthCare HMO Medicare Advantage plan)... and I knew there would possibly be a few kinks in the entire change especially for me, since I have so many medications to have filled. Of course all of that had been resolved with Humana over the several years I had it. In fact, I guess I had Humana from 2006 forward up until this new year 2015. I had finally narrowed down most of their stupid hoops that myself and my doctors had to jump through. So, as I knew I am having to go through a few red tape situations in order to get my medications refilled.
I am also dealing with something involving my stomach. I am not sure exactly what the issue is. I realize that all of the medications I must take daily, does not help at all. Yet, I've been taking the majority of them for years now, and as long as I take my Meclazine for the vertigo issues, I rarely had severe nausea issues. Over the past 5 or 6 months, it seems I am nauseated more than not. I am even taking Promethazine and now having to take it daily. Part of it, I am sure is stress. Stress over my own illnesses, medications, bills, and what needs to be done. Stress over Jim's health situation and knowing there maybe many things we come to have to realize that he will never be able to do again. A piece of me truly thinks that many things like driving, walking a long distance with just the cane, doing most things are the house chores, especially anything to do with finishing up the remodeling, laying floors, painting and so on. His balance is still so "off" that there is no way he can stand on a ladder what so ever. He can't keep his balance for very long at a time now. As much as I want to believe it will get better this year more; since it will be a year in March on the 26th since the wreck happened, I just don't think that any more time will make him any better doing some things. As we have both learned since his accident, balance is almost more important to "life" and what you do every day, than walking, running, picking things up, getting on ladders, bending over. Even riding our exerciser which is kind of an "eliptical" one, we saw immediately it was his balance that really through him off to the place I have to stand beside him in order for him to ride it. So, strength at times is not as huge of an issue is the balance situation is.
Along with this almost daily nausea I am having, also comes a fatigue that can at times be worse than my experience with it through the years since being diagnosed with RA, Lupus and so forth. For about 2 or 3 years I didn't sleep much at all. I was up and wide awake by 4 am at the latest. Then all of a sudden, and we are staying up a bit later, but here lately I am not waking up until 7:30 am most mornings. So, I continually feel I am running behind. When I was getting up several hours earlier I could get more accomplished. Now, by the time I am up, and turn around it is 2 or 3 pm. The days just seem to be going by even faster than last year. I also know that with the RA, Lupus, Sjogren's and so on down the list of my health issues, my stomach issues could be taken as a part of those. Severe headache, nausea, the fatigue... the muscle pain, and joint pain, all sign and symptoms of most autoimmune diseases.
Yet, you know how you feel at times when you just "KNOW" something else is going on. I can't explain it, but whatever is going on now, seems to be "different" than the symptoms of what I've been diagnosed with.
For one thing, I've had an "extra" beat with my heart now for a long time. I never really was concerned about it. My cardiologist knows, and she has me on medication that keeps it under control. But, a few days back, I had a new type of happening. It was like my heart would be fine one moment, then it wants or feels like it runs really fast for about 4 beats, and then goes back to "normal"... it happened through out the day one day last week. In fact I was so concerned about it, I had called my doctor. She could have see me the next day. Then I woke up with the most severe headache, and fatigue, with the nausea so bad, I had to postpone the appointment. I actually have one with her on the 13th of this month, so I decided to wait until then, unless it happens again before my appointment.
I had came across a story about a woman that was born with a heart defect. They found it when she was 3 months old. For many years, it was under control with medication. When she was in college she began to have problems with it, and later when she was about 39 years old, had to have a heart transplant. It was truly an inspiring story, yet some of her symptoms that she had really blown off as nothing were exactly the same thing I've been feeling. The severe fatigue, she was having bad headaches, and being very nauseated, plus noticed shortness of breath. Well, I had been noticing over the past few months that I complain about sometimes feeling like I am short of breath. I also passed it off as nothing, until I read her story. Now, the one reason I would think it could be heart related is for one, all of the AI illnesses can effect the heart. Two, I have had two heart attacks already. So, that kind of caught my attention, as I was trying to piece the puzzle together as to what is going on with me. Honestly, I have preferred to ignore it. So, other than some "Google" research, I have tried to put it out of my head.
There are way too many things on the agenda I need to attend to, and having some type of heart issue, is NOT what I want to deal with at all. Of course, I realize no one wants to think they might have something going on with their heart. But, what I do have to face, is that statistically I am more likely to have problems, than those without AI illnesses, and/or that have not had 2 MI's already.
Of course, I've received the honor of being able to travel back to Washington D.C. in March, for the "Summit on the Hill". The Arthritis Foundations Annual Event, where we go in as patients or patients families, and tell our Congress People about our stories, and what we want to see accomplished to help those out there like us, that may not be able to actually tell theirs like that. I went through the whole year last year and made "Platinum Ambassador". So, that gives me the opportunity to get the "grant" from the Foundation that pays for my flight, lodging and just about everything other than "personal items". So, that being said, and also as I began this, I am totally elated at the honor of getting to go back again this year. Yet, it brings on a whole new agenda of "good stress", honestly. I've got to be concerned about driving my own self to DFW, which is about 65 miles or so from my home town. Parking in long term parking, getting myself to the proper place for my ticket, going through all of that nightmare, and then getting to DC in time for Monday mornings first meeting, which is at 10:30 am. So, thankfully I do get to fly in on Sunday!!! They confirmed they would cover an additional day for me to come in, since I am flying from a fairly long distance away. But, even with that, trying to pack where hopefully I won't have to check a bag, getting their, settled in, and then having to fly out on Tuesday evening, AFTER our last part of the day on Tuesday. So, again that makes for a very long flight home, getting into the airport back in Dallas very late. Then driving myself back home in the wee hours of the morning from DFW. Fortunately, maybe traffic won't hinder me either way.
I've also got the "stress" about my birthday on the 15th of February. Of course it is much better to at least "look forward" to having one, rather than NOT looking forward to it. Yet, to know I will turn 55 years old in just a couple of weeks really terrifies the hell out of me. As my Mom and I just talking about it. How quickly the years have seemed to pass by. How it seems like just yesterday my kids were born, or I was little and having my birthday parties, and all of those years of youth have just melted away like a molten river of lava down a steep hillside.
We (meaning I) at times became complacent in life. I guess in our younger years, we are so entirely engrossed in jobs, school, college, kids, homes, bills... and everything we incur and that occurs during our robust years of a more youthful time in life. So, we turn around once, look in the mirror to see a young adult making their way through this place we call the world. As we make another turn, it seems the decades have past us by all too quickly. Then if you happened to have came into a life of some type of chronic illness, whether it be cancer, or an autoimmune illness, heart problems, diabetes, and many other conditions that can crop up in the blink of an eye, we begin to want to look back at what "we" did or did not do to cause this. Then all of a sudden, classmates we graduated with lose parents, or worse the classmates pass away. Nothing "stings" quite as badly, as finding out someone who is YOUR age suddenly has gone to be with others in heaven. That one can really stab you where it hurts. It is definitely a wake up call.
So, with all of that comes the "what ifs".... what if I had not married and went onto nursing school? What if I had completely finished my 4 year college degree? What if I had stayed in California, or Seattle? If I "had" or "had not" done certain things, would I not be suffering from the ties of disease that bind me now?
I find myself with way too many questions in life, alas not nearly enough answers for them. I feel often "less than" because I honestly don't have the energy and stamina to "do more", "be more", participate more. What if I could still go snow skiing, on more trips and vacations, and was not so tied to the strings and arrows of chronic pain and illness?
Then I actually witness someone more than likely as ill or if not even more chronically ill than I am, and it appears they can get more done. They do have the stamina, strength, energy and wear with all to withstand and write best selling books, or poems. Or they do much more in their activist advocacy activities.
I have PROMISED MYSELF, and to my very BEST that I CAN do INTEND on completely finishing my BOOK by the end of the year and having it published. That is where I stand, and my stance is. If that means "robbing spoons" from other daily things I do, then I need to learn to manage my time wisely. Putting MORE of my "spoons" into the writing of the book, and taking some time away from things such as Facebook, plus other items I tend to do, rather than writing.
I WILL always be posting here... and never will I allow myself NOT to continue my blog. It is truly my LIFELINE to ALL OF YOU! And it is for ALL OF YOU that I WRITE THIS NEXT BOOK!!! For myself also, but more for all of those out there struggling through the mysteries of life, and the good, bad, really bad and depending on someone to help guide them through the darkness of despair over chronic pain and illness.
You see, it is NOT just our physical bodies that are so terribly effected by these chronic diseases. It is the very core of our being, our hearts, minds, soul, family, spouses and friends... so it is a journey that is to terribly long and difficult to deal with to feel alone in doing it.
So, today... I dedicate each page of the book I am writing to YOU!!!!
It's not that things have been "bad" as of yet. Although the first of every year brings another set of stressors many of us have to deal with. If you own a home or property, like myself, you probably owe property taxes by the end of January. Like many, my house insurance is usually due about that same time, along with income tax filing for many, worrying about a brand new insurance for my Mom and myself (we changed from Humana Medicare Advantage over to United HealthCare HMO Medicare Advantage plan)... and I knew there would possibly be a few kinks in the entire change especially for me, since I have so many medications to have filled. Of course all of that had been resolved with Humana over the several years I had it. In fact, I guess I had Humana from 2006 forward up until this new year 2015. I had finally narrowed down most of their stupid hoops that myself and my doctors had to jump through. So, as I knew I am having to go through a few red tape situations in order to get my medications refilled.
I am also dealing with something involving my stomach. I am not sure exactly what the issue is. I realize that all of the medications I must take daily, does not help at all. Yet, I've been taking the majority of them for years now, and as long as I take my Meclazine for the vertigo issues, I rarely had severe nausea issues. Over the past 5 or 6 months, it seems I am nauseated more than not. I am even taking Promethazine and now having to take it daily. Part of it, I am sure is stress. Stress over my own illnesses, medications, bills, and what needs to be done. Stress over Jim's health situation and knowing there maybe many things we come to have to realize that he will never be able to do again. A piece of me truly thinks that many things like driving, walking a long distance with just the cane, doing most things are the house chores, especially anything to do with finishing up the remodeling, laying floors, painting and so on. His balance is still so "off" that there is no way he can stand on a ladder what so ever. He can't keep his balance for very long at a time now. As much as I want to believe it will get better this year more; since it will be a year in March on the 26th since the wreck happened, I just don't think that any more time will make him any better doing some things. As we have both learned since his accident, balance is almost more important to "life" and what you do every day, than walking, running, picking things up, getting on ladders, bending over. Even riding our exerciser which is kind of an "eliptical" one, we saw immediately it was his balance that really through him off to the place I have to stand beside him in order for him to ride it. So, strength at times is not as huge of an issue is the balance situation is.
Along with this almost daily nausea I am having, also comes a fatigue that can at times be worse than my experience with it through the years since being diagnosed with RA, Lupus and so forth. For about 2 or 3 years I didn't sleep much at all. I was up and wide awake by 4 am at the latest. Then all of a sudden, and we are staying up a bit later, but here lately I am not waking up until 7:30 am most mornings. So, I continually feel I am running behind. When I was getting up several hours earlier I could get more accomplished. Now, by the time I am up, and turn around it is 2 or 3 pm. The days just seem to be going by even faster than last year. I also know that with the RA, Lupus, Sjogren's and so on down the list of my health issues, my stomach issues could be taken as a part of those. Severe headache, nausea, the fatigue... the muscle pain, and joint pain, all sign and symptoms of most autoimmune diseases.
Yet, you know how you feel at times when you just "KNOW" something else is going on. I can't explain it, but whatever is going on now, seems to be "different" than the symptoms of what I've been diagnosed with.
For one thing, I've had an "extra" beat with my heart now for a long time. I never really was concerned about it. My cardiologist knows, and she has me on medication that keeps it under control. But, a few days back, I had a new type of happening. It was like my heart would be fine one moment, then it wants or feels like it runs really fast for about 4 beats, and then goes back to "normal"... it happened through out the day one day last week. In fact I was so concerned about it, I had called my doctor. She could have see me the next day. Then I woke up with the most severe headache, and fatigue, with the nausea so bad, I had to postpone the appointment. I actually have one with her on the 13th of this month, so I decided to wait until then, unless it happens again before my appointment.
I had came across a story about a woman that was born with a heart defect. They found it when she was 3 months old. For many years, it was under control with medication. When she was in college she began to have problems with it, and later when she was about 39 years old, had to have a heart transplant. It was truly an inspiring story, yet some of her symptoms that she had really blown off as nothing were exactly the same thing I've been feeling. The severe fatigue, she was having bad headaches, and being very nauseated, plus noticed shortness of breath. Well, I had been noticing over the past few months that I complain about sometimes feeling like I am short of breath. I also passed it off as nothing, until I read her story. Now, the one reason I would think it could be heart related is for one, all of the AI illnesses can effect the heart. Two, I have had two heart attacks already. So, that kind of caught my attention, as I was trying to piece the puzzle together as to what is going on with me. Honestly, I have preferred to ignore it. So, other than some "Google" research, I have tried to put it out of my head.
There are way too many things on the agenda I need to attend to, and having some type of heart issue, is NOT what I want to deal with at all. Of course, I realize no one wants to think they might have something going on with their heart. But, what I do have to face, is that statistically I am more likely to have problems, than those without AI illnesses, and/or that have not had 2 MI's already.
Of course, I've received the honor of being able to travel back to Washington D.C. in March, for the "Summit on the Hill". The Arthritis Foundations Annual Event, where we go in as patients or patients families, and tell our Congress People about our stories, and what we want to see accomplished to help those out there like us, that may not be able to actually tell theirs like that. I went through the whole year last year and made "Platinum Ambassador". So, that gives me the opportunity to get the "grant" from the Foundation that pays for my flight, lodging and just about everything other than "personal items". So, that being said, and also as I began this, I am totally elated at the honor of getting to go back again this year. Yet, it brings on a whole new agenda of "good stress", honestly. I've got to be concerned about driving my own self to DFW, which is about 65 miles or so from my home town. Parking in long term parking, getting myself to the proper place for my ticket, going through all of that nightmare, and then getting to DC in time for Monday mornings first meeting, which is at 10:30 am. So, thankfully I do get to fly in on Sunday!!! They confirmed they would cover an additional day for me to come in, since I am flying from a fairly long distance away. But, even with that, trying to pack where hopefully I won't have to check a bag, getting their, settled in, and then having to fly out on Tuesday evening, AFTER our last part of the day on Tuesday. So, again that makes for a very long flight home, getting into the airport back in Dallas very late. Then driving myself back home in the wee hours of the morning from DFW. Fortunately, maybe traffic won't hinder me either way.
I've also got the "stress" about my birthday on the 15th of February. Of course it is much better to at least "look forward" to having one, rather than NOT looking forward to it. Yet, to know I will turn 55 years old in just a couple of weeks really terrifies the hell out of me. As my Mom and I just talking about it. How quickly the years have seemed to pass by. How it seems like just yesterday my kids were born, or I was little and having my birthday parties, and all of those years of youth have just melted away like a molten river of lava down a steep hillside.
We (meaning I) at times became complacent in life. I guess in our younger years, we are so entirely engrossed in jobs, school, college, kids, homes, bills... and everything we incur and that occurs during our robust years of a more youthful time in life. So, we turn around once, look in the mirror to see a young adult making their way through this place we call the world. As we make another turn, it seems the decades have past us by all too quickly. Then if you happened to have came into a life of some type of chronic illness, whether it be cancer, or an autoimmune illness, heart problems, diabetes, and many other conditions that can crop up in the blink of an eye, we begin to want to look back at what "we" did or did not do to cause this. Then all of a sudden, classmates we graduated with lose parents, or worse the classmates pass away. Nothing "stings" quite as badly, as finding out someone who is YOUR age suddenly has gone to be with others in heaven. That one can really stab you where it hurts. It is definitely a wake up call.
So, with all of that comes the "what ifs".... what if I had not married and went onto nursing school? What if I had completely finished my 4 year college degree? What if I had stayed in California, or Seattle? If I "had" or "had not" done certain things, would I not be suffering from the ties of disease that bind me now?
I find myself with way too many questions in life, alas not nearly enough answers for them. I feel often "less than" because I honestly don't have the energy and stamina to "do more", "be more", participate more. What if I could still go snow skiing, on more trips and vacations, and was not so tied to the strings and arrows of chronic pain and illness?
Then I actually witness someone more than likely as ill or if not even more chronically ill than I am, and it appears they can get more done. They do have the stamina, strength, energy and wear with all to withstand and write best selling books, or poems. Or they do much more in their activist advocacy activities.
I have PROMISED MYSELF, and to my very BEST that I CAN do INTEND on completely finishing my BOOK by the end of the year and having it published. That is where I stand, and my stance is. If that means "robbing spoons" from other daily things I do, then I need to learn to manage my time wisely. Putting MORE of my "spoons" into the writing of the book, and taking some time away from things such as Facebook, plus other items I tend to do, rather than writing.
I WILL always be posting here... and never will I allow myself NOT to continue my blog. It is truly my LIFELINE to ALL OF YOU! And it is for ALL OF YOU that I WRITE THIS NEXT BOOK!!! For myself also, but more for all of those out there struggling through the mysteries of life, and the good, bad, really bad and depending on someone to help guide them through the darkness of despair over chronic pain and illness.
You see, it is NOT just our physical bodies that are so terribly effected by these chronic diseases. It is the very core of our being, our hearts, minds, soul, family, spouses and friends... so it is a journey that is to terribly long and difficult to deal with to feel alone in doing it.
So, today... I dedicate each page of the book I am writing to YOU!!!!
Tuesday, October 21, 2014
When You are Fighting Chronic Illnesses, Chronic Pain, Doctors, Pharmacies, and Medicare Advantage Plans - you need lots of ammunition and tenacity...
I have wanted to be able to get to this subject for all of you over the past couple of days. Of course about the time I have a "clear slot of time" open, my email decided to blow a gasket on me. I had also not known about a follow up appointment Mom had to have her semi-annual "cardio-sonogram" yesterday. So, I had to pick her up and take her to have that done yesterday. It's not that it takes that long, but by the time you dress, pick her up, have the testing ran, then get back, visit for awhile, and I also had a couple of errands to run, I felt like my day was gone and I did not get anything I wanted to get done accomplished.
Plus, I had "overdone" it and used to too many of my "spoons" last Friday, so all of the plans I made to do things around the house both Saturday and Sunday, got basically chopped in half. Saturday I was in so much misery, between stiff, sore, pain, a splitting headache, almost as if I had another Lupus or RA flare hitting, that I spent Saturday on the sofa for the most part, and that really frigged up what my plans had been. I have SO MANY things I want to get accomplished around the house, from repainting my kitchen, painting and redoing our spare bedroom that is our "music room", getting the floors put down in the kitchen and bathroom, and laundry room, we still never got all of the outside of the house painted... and things just really took a nose dive when Jim had the car accident, was in the hospitals for so long, in rehab for so many weeks, thus lots got put off until we could get back into some kind of whatever normal was as far as a routine. Well, we have still to find that "normality" or routine. I feel like I fly by the seat of my pants most days... either waxing and waning one way, or flopping around like a fish out of water in another. Nothing ever seems to come easy, no matter how simple, you can guarantee there will be some kind of snag in the line.
But, when I got this ridiculous letter from Humana, My Medicare Advantage Plan. I have had them ever since I first got my Medicare parts A and B, which was about 2006 or so. They have now decided I guess to probably NOT Pay my PCP enough OR my PCP has gotten "greedy", thus he will no longer be a "preferred provider" come Jan 1, 2015!!!! Which totally sucks green pecans, if you know what I mean. This primary care physician of mine is the ONLY ONE who out of all of the tests, doctors, surgeries, and so forth I had had, the LUPUS, RA< SJOGREN"S, and the list continues. Well, Dr. "B" as I will refer to him as, had just gotten to my home town and I was one of his very 1st patients. At the time he was brand new, he was "brilliant" when it came to "discovering" the unusual, he looked at everything with a "fresh" eyes, and he was "up" on the latest when it came to autoimmune illnesses. But, even though I was one of his very first patients, including I got MANY others to move over to him, because I so so pleased. He got me on the right medications, and I did go and find try to find a Rheumatologist, in which I did. But, the Rheumatologist were more on the end for the Rheumatoid Arthritis end of the ball park, Dr. "B" took care of the Lupus. When I have flares, he is the one that gives me the Solu-Medrol injections, the larger 14 days step down doses of prednisone. He also prescribes my MTX, Plaquenil, and small daily dose of prednisone. So, without him I would be back and forth to some doctor in Dallas, that would be the waste of an entire day, more money, more time, for something that can be handled here, usually by a phone call, me coming in, getting an injection, a script and I am on my way.
I am not quite sure who is the issue, probably both... it is a well known fact Medicare and especially the Medicare Advantage Plans don't pay worth a darned when it comes to the physicians, But, if you have someone within 5 minutes of home that can do the exact same thing, you save time, the doctors save time, gas, and things run much more efficiently that a trip to somewhere else for a Lupus Flare.
So, this letter that I receive from Humana explains to me that if I have "certain" health conditions that Dr. B takes care of, then they will make an exception and pay him as they always have. So, out of about 15 health conditions names on this paper, Lupus was one of them. So, I fill in the paperwork, send it off to Humana, and about a week later, very late one evening someone from Humana leaving a message about that paperwork. She said she would call back the next day, and so I expected to get a phone call from them the next day. But instead about 3 days later I get this ridiculous letter, stating that "Lupus" and Hip Pain (I have NO CLUE where "hip pain" came in what so ever") did NOT qualify and they would NOT continue after Jan 1 to pay him as a "in network provider". OMG, I was so livid, had it not been late in the evening by the time I got the letter Humana would have gotten a piece of my mind...So, of course you can send in a written grievance in which I did. I also boldly told them they were not going to get by with blowing me off like that. My "condition" of Lupus was serious, it was something that Dr. B is the very doctor who diagnosed it, he is the one that since 2009 or 2010 had taken care of me, which every time he fills my medications, he does the follow up blood work, he takes care of the "side illnesses" that go along with the Lupus, and not one other PCP is going to want to take on my complicated case due to it is a complexity that has to be kept up with. As Dr, B always knows exactly what is going on. If I have a "new" symptom, he knows if it is related or not to the Lupus, and he also takes cares of my mouth ulcers, thrush, stomach problems from Lupus. As I had said and we know for a fact, I can go from "well" to ill enough for ICU within minutes under some circumstances... just like I had double pneumonia back in April. No one was here but myself, so I did not realize I was running such a high fever I was all but see things and hallucinating. Thank goodness I thought to check my temp and even though I never run fever, I did not usually do so, and if it had gotten any higher I may have went into convulsions. Luckily, I was still smart enough and scared enough not to drive alone, so I called my Mom and had her pick me up that Sunday afternoon and carry me to our Urgent care Center. But, if that had been any other time during the week, I would have called Dr. "B" quickly, and found out I was running 103.9 fever, and had double pneumonia!!!! It was so bad the doctor on call at the center wanted at first to send me to the ER and possibly have me admitted. Well, at the time Jim was in Baylor after the car accident, which he was still in Acute Care and had just gotten out of ICU with all kinds of broken bones, a very long 9 hour back surgery, 17 broken ribs and it continued on. The very last thing I needed was to be put in a hospital down here, and have him in the hospital up in Dallas....
So, having a physician that KNOWS my health issues, ALL of them, how the interrelate to one another, and what has taken place, from surgeries, to the 6 weeks I spent in two hospitals, and almost died from what they can surmise had something to do with the Lupus. But, even in the huge hospital in Dallas, and all of the highly specialized doctors there, many of them were NOT familiar with Lupus, nor any of the health problems that come along with it.
So, I got to thinking about this entire scene, and it just makes me even madder than I was when I first got the letter from Humana! In the first place, IF HUMANA was PAYING the doctors better, then the doctors WOULD NOT be dropping out of being "Preferred Providers"... and if the DOCTORS were NOT SO MONEY HUNGRY they would be "settling" FOR WHAT THE INSURANCE pays them, and not setting their GOALS OF MONETARY GAIN so high they cannot either afford to pay the doctors better OR WORSE they take FOREVER TO PAY THE DOCTORS!!! This is NO JOKE and it came directly from the mouth of one of my physicians!!!!
He had TWO SURGERIES, and I know he meant very EXPENSIVE SURGERIES, because it was probably something like having a pain pump internally put it or something like a stimulator put in internally, which the doctor has to implant. Both of them are very expensive. Just the devices themselves run upwards of 50,000.00 or so.
Anyway, he had two patients that AFTER TWO YEARS OF dragging their feet, the Doctor had to take Humana Medicare Advantage plan to COURT IN FRONT OF THE JUDGE, and the JUDGE MADE THEM PAY MY DOCTOR!!!
But, it took him 2 YEARS to get paid on those two surgeries!!! If he has to wait to get paid on many of those expensive procedures, they will all go broke trying to keep up an office, pay employees, pay taxes, and keep an office up and running. It was insane to hear how long he had to wait and then for a judge to have to demand they pay him what they owed him. I just about let my jaw hit the floor. Now, I also know doctors charge WAY TOO MUCH, to try and compensate for what they are trying to make up on those cases they do not get paid, or certainly not enough. So, it is a circle in circle around and around the merry-go trying to get one hand to a one to pay the other. In the mean time guess who suffers through this??? Yes, you have it.... US, the PATIENTS!!! We suffer added money out of our pockets, paying for doctors and the clinics and tests, and in the end, half the time no one has a straight answer for us anyway. So, now this puts myself, my Mom, and Lord knows how many other patients just like us are suffering through the exact same issues. It is damned if you DO, and you be damned if you don't.
I have even threatened NOT TO go to a PCP anymore, but just use our "urgent Care center" here. They have their heads on straighter than most of the primary care physician. The 3 or 4 times I've been out there, one of which was for a Lupus flare during a weekend, and then I could go there and get checked in, checked out, have my injections, get my prescription and be on my way. To top it off they are the ones as I said above that diagnosed me with double pneumonia, took the X-rays right there, right away, were on the ball and I was out the door and headed home without any hassle. And out of pocket for me was my $40.00, plus I did not get exposed to an entire room full of germs and people running fevers, and possibly get something else, other than what I already had. It was a "pleasant"(if you can call having double pneumonia pleasant" experience, just due to the fact there was no hassle, and I was home and on my sofa within an hour and a half. It took longer for the pharmacy to get my script ready than it did to get through the Urgent care in itself.
Now you can get your flu shots, pneumonia shots, even tetanus and so forth at the pharmacy, they will even sometimes check your cholesterol, blood pressure and so on, including hearing test for free at different times. It is getting to where people don't want to step into the room of a doctors office, because it takes too long, they never answer your questions, once you spend hours getting in, they then herd you in and out like a bunch of cattle, not really bothering to answer a question one you may have. I've gotten to where even my "tricK" of taking my LIST of all the thing I NEED to talk about them with, and he is running out the door before I can ask the 3rd question. As someone who believes in researching everything myself, and also believes that MY TIME, YOUR TIME, OUR TIME IS JUST AS IMPORTANT AS THAT DOCTORS TIME!!! So WHY do WE wait for HOURS FOR THEM!!!
Then they have the audacity to post a sign if a patient does NOT call in 24 hours ahead of time to cancel, they can charge you anyway. But, I've had doctors CALL ME ON MY WAY TO DALLAS FOR AN APPOINTMENT and they tell not to come, because the doctor is out in an emergency or had gotten called away suddenly!!! So, now my day had been half ruined getting ready, getting dressed, wasting, time, gas, and everything else, yet it seems to be perfectly "okay" for them to cancel at the last moment. Believe me I felt like sending them a bill for my time and see what they thought about that.
I had read an article a couple of years back where I woman did just that. She had a doctor cancel on her two times in a row or something, so she did send them a bill for her time and trouble!!! Whether she ever got able paid or not, but I bet it did put it on their minds. OUR TIME is just as valuable as anyone else's is... whether the doctor, nurse, surgeon or the Pope!!!!
Again though it takes time and tenacity to do that I can see where under the right circumstances it would get the attention of those who think they are "better" than use.
I would be interested in knowing how many of you with Medicare Advantage Plan and possibly have gotten the exact same thing. A letter telling us that our doctors won't keep them on and be "preferred provider" after January1st 2015. If you HAVE either post here, or send me an email because I would love to hear from you. Then also what are you going to do under the circumstances? Change, try to keep your doctor, just pay the "extra" amount and stay, or does it even matter....
Plus, I had "overdone" it and used to too many of my "spoons" last Friday, so all of the plans I made to do things around the house both Saturday and Sunday, got basically chopped in half. Saturday I was in so much misery, between stiff, sore, pain, a splitting headache, almost as if I had another Lupus or RA flare hitting, that I spent Saturday on the sofa for the most part, and that really frigged up what my plans had been. I have SO MANY things I want to get accomplished around the house, from repainting my kitchen, painting and redoing our spare bedroom that is our "music room", getting the floors put down in the kitchen and bathroom, and laundry room, we still never got all of the outside of the house painted... and things just really took a nose dive when Jim had the car accident, was in the hospitals for so long, in rehab for so many weeks, thus lots got put off until we could get back into some kind of whatever normal was as far as a routine. Well, we have still to find that "normality" or routine. I feel like I fly by the seat of my pants most days... either waxing and waning one way, or flopping around like a fish out of water in another. Nothing ever seems to come easy, no matter how simple, you can guarantee there will be some kind of snag in the line.
But, when I got this ridiculous letter from Humana, My Medicare Advantage Plan. I have had them ever since I first got my Medicare parts A and B, which was about 2006 or so. They have now decided I guess to probably NOT Pay my PCP enough OR my PCP has gotten "greedy", thus he will no longer be a "preferred provider" come Jan 1, 2015!!!! Which totally sucks green pecans, if you know what I mean. This primary care physician of mine is the ONLY ONE who out of all of the tests, doctors, surgeries, and so forth I had had, the LUPUS, RA< SJOGREN"S, and the list continues. Well, Dr. "B" as I will refer to him as, had just gotten to my home town and I was one of his very 1st patients. At the time he was brand new, he was "brilliant" when it came to "discovering" the unusual, he looked at everything with a "fresh" eyes, and he was "up" on the latest when it came to autoimmune illnesses. But, even though I was one of his very first patients, including I got MANY others to move over to him, because I so so pleased. He got me on the right medications, and I did go and find try to find a Rheumatologist, in which I did. But, the Rheumatologist were more on the end for the Rheumatoid Arthritis end of the ball park, Dr. "B" took care of the Lupus. When I have flares, he is the one that gives me the Solu-Medrol injections, the larger 14 days step down doses of prednisone. He also prescribes my MTX, Plaquenil, and small daily dose of prednisone. So, without him I would be back and forth to some doctor in Dallas, that would be the waste of an entire day, more money, more time, for something that can be handled here, usually by a phone call, me coming in, getting an injection, a script and I am on my way.
I am not quite sure who is the issue, probably both... it is a well known fact Medicare and especially the Medicare Advantage Plans don't pay worth a darned when it comes to the physicians, But, if you have someone within 5 minutes of home that can do the exact same thing, you save time, the doctors save time, gas, and things run much more efficiently that a trip to somewhere else for a Lupus Flare.
So, this letter that I receive from Humana explains to me that if I have "certain" health conditions that Dr. B takes care of, then they will make an exception and pay him as they always have. So, out of about 15 health conditions names on this paper, Lupus was one of them. So, I fill in the paperwork, send it off to Humana, and about a week later, very late one evening someone from Humana leaving a message about that paperwork. She said she would call back the next day, and so I expected to get a phone call from them the next day. But instead about 3 days later I get this ridiculous letter, stating that "Lupus" and Hip Pain (I have NO CLUE where "hip pain" came in what so ever") did NOT qualify and they would NOT continue after Jan 1 to pay him as a "in network provider". OMG, I was so livid, had it not been late in the evening by the time I got the letter Humana would have gotten a piece of my mind...So, of course you can send in a written grievance in which I did. I also boldly told them they were not going to get by with blowing me off like that. My "condition" of Lupus was serious, it was something that Dr. B is the very doctor who diagnosed it, he is the one that since 2009 or 2010 had taken care of me, which every time he fills my medications, he does the follow up blood work, he takes care of the "side illnesses" that go along with the Lupus, and not one other PCP is going to want to take on my complicated case due to it is a complexity that has to be kept up with. As Dr, B always knows exactly what is going on. If I have a "new" symptom, he knows if it is related or not to the Lupus, and he also takes cares of my mouth ulcers, thrush, stomach problems from Lupus. As I had said and we know for a fact, I can go from "well" to ill enough for ICU within minutes under some circumstances... just like I had double pneumonia back in April. No one was here but myself, so I did not realize I was running such a high fever I was all but see things and hallucinating. Thank goodness I thought to check my temp and even though I never run fever, I did not usually do so, and if it had gotten any higher I may have went into convulsions. Luckily, I was still smart enough and scared enough not to drive alone, so I called my Mom and had her pick me up that Sunday afternoon and carry me to our Urgent care Center. But, if that had been any other time during the week, I would have called Dr. "B" quickly, and found out I was running 103.9 fever, and had double pneumonia!!!! It was so bad the doctor on call at the center wanted at first to send me to the ER and possibly have me admitted. Well, at the time Jim was in Baylor after the car accident, which he was still in Acute Care and had just gotten out of ICU with all kinds of broken bones, a very long 9 hour back surgery, 17 broken ribs and it continued on. The very last thing I needed was to be put in a hospital down here, and have him in the hospital up in Dallas....
So, having a physician that KNOWS my health issues, ALL of them, how the interrelate to one another, and what has taken place, from surgeries, to the 6 weeks I spent in two hospitals, and almost died from what they can surmise had something to do with the Lupus. But, even in the huge hospital in Dallas, and all of the highly specialized doctors there, many of them were NOT familiar with Lupus, nor any of the health problems that come along with it.
So, I got to thinking about this entire scene, and it just makes me even madder than I was when I first got the letter from Humana! In the first place, IF HUMANA was PAYING the doctors better, then the doctors WOULD NOT be dropping out of being "Preferred Providers"... and if the DOCTORS were NOT SO MONEY HUNGRY they would be "settling" FOR WHAT THE INSURANCE pays them, and not setting their GOALS OF MONETARY GAIN so high they cannot either afford to pay the doctors better OR WORSE they take FOREVER TO PAY THE DOCTORS!!! This is NO JOKE and it came directly from the mouth of one of my physicians!!!!
He had TWO SURGERIES, and I know he meant very EXPENSIVE SURGERIES, because it was probably something like having a pain pump internally put it or something like a stimulator put in internally, which the doctor has to implant. Both of them are very expensive. Just the devices themselves run upwards of 50,000.00 or so.
Anyway, he had two patients that AFTER TWO YEARS OF dragging their feet, the Doctor had to take Humana Medicare Advantage plan to COURT IN FRONT OF THE JUDGE, and the JUDGE MADE THEM PAY MY DOCTOR!!!
But, it took him 2 YEARS to get paid on those two surgeries!!! If he has to wait to get paid on many of those expensive procedures, they will all go broke trying to keep up an office, pay employees, pay taxes, and keep an office up and running. It was insane to hear how long he had to wait and then for a judge to have to demand they pay him what they owed him. I just about let my jaw hit the floor. Now, I also know doctors charge WAY TOO MUCH, to try and compensate for what they are trying to make up on those cases they do not get paid, or certainly not enough. So, it is a circle in circle around and around the merry-go trying to get one hand to a one to pay the other. In the mean time guess who suffers through this??? Yes, you have it.... US, the PATIENTS!!! We suffer added money out of our pockets, paying for doctors and the clinics and tests, and in the end, half the time no one has a straight answer for us anyway. So, now this puts myself, my Mom, and Lord knows how many other patients just like us are suffering through the exact same issues. It is damned if you DO, and you be damned if you don't.
I have even threatened NOT TO go to a PCP anymore, but just use our "urgent Care center" here. They have their heads on straighter than most of the primary care physician. The 3 or 4 times I've been out there, one of which was for a Lupus flare during a weekend, and then I could go there and get checked in, checked out, have my injections, get my prescription and be on my way. To top it off they are the ones as I said above that diagnosed me with double pneumonia, took the X-rays right there, right away, were on the ball and I was out the door and headed home without any hassle. And out of pocket for me was my $40.00, plus I did not get exposed to an entire room full of germs and people running fevers, and possibly get something else, other than what I already had. It was a "pleasant"(if you can call having double pneumonia pleasant" experience, just due to the fact there was no hassle, and I was home and on my sofa within an hour and a half. It took longer for the pharmacy to get my script ready than it did to get through the Urgent care in itself.
Now you can get your flu shots, pneumonia shots, even tetanus and so forth at the pharmacy, they will even sometimes check your cholesterol, blood pressure and so on, including hearing test for free at different times. It is getting to where people don't want to step into the room of a doctors office, because it takes too long, they never answer your questions, once you spend hours getting in, they then herd you in and out like a bunch of cattle, not really bothering to answer a question one you may have. I've gotten to where even my "tricK" of taking my LIST of all the thing I NEED to talk about them with, and he is running out the door before I can ask the 3rd question. As someone who believes in researching everything myself, and also believes that MY TIME, YOUR TIME, OUR TIME IS JUST AS IMPORTANT AS THAT DOCTORS TIME!!! So WHY do WE wait for HOURS FOR THEM!!!
Then they have the audacity to post a sign if a patient does NOT call in 24 hours ahead of time to cancel, they can charge you anyway. But, I've had doctors CALL ME ON MY WAY TO DALLAS FOR AN APPOINTMENT and they tell not to come, because the doctor is out in an emergency or had gotten called away suddenly!!! So, now my day had been half ruined getting ready, getting dressed, wasting, time, gas, and everything else, yet it seems to be perfectly "okay" for them to cancel at the last moment. Believe me I felt like sending them a bill for my time and see what they thought about that.
I had read an article a couple of years back where I woman did just that. She had a doctor cancel on her two times in a row or something, so she did send them a bill for her time and trouble!!! Whether she ever got able paid or not, but I bet it did put it on their minds. OUR TIME is just as valuable as anyone else's is... whether the doctor, nurse, surgeon or the Pope!!!!
Again though it takes time and tenacity to do that I can see where under the right circumstances it would get the attention of those who think they are "better" than use.
I would be interested in knowing how many of you with Medicare Advantage Plan and possibly have gotten the exact same thing. A letter telling us that our doctors won't keep them on and be "preferred provider" after January1st 2015. If you HAVE either post here, or send me an email because I would love to hear from you. Then also what are you going to do under the circumstances? Change, try to keep your doctor, just pay the "extra" amount and stay, or does it even matter....
Tuesday, October 14, 2014
Sharing the Excitement of the Coming Months! (Trying to Ignore the PAIN of these Illnesses - RA, Lupus, Sjogren's, MS, Myasthenia Gravis, Perniscious Anemia and the list grows)
I have been trying my best to "brave" the chill in the air, knowing that means several things. Shorter days, cooler weather, Fall colors and Autumn leaves coming down. Holidays here before we know it, cooking, baking, and the smell of Thanksgiving, pumpkin pies, rolls, wonderful home made quick breads, and spices like cinnamon, cloves, nutmeg, and those "pungent" aromatic hints that Winter is here, Christmas, and before we know it, 2014 will be a memory, and 2015 shall be in full swing.
My bones, joints and most of my body HATE the cold, aching, throbbing feelings that are the "bad" stuff following along with the good.
I LOVE to bake! I have always loved to bake anything sweet. From cakes, pies, cookies, cobblers, and the calories that go along with fudge, peanut brittle, and the confections that almost feel like they are going straight to my hips as I just think about them.
Alas, the fight against pain, fatigue, and stress versus the fun of baking, cooking, and the heavenly sweet potatoes, gravy, ham, turkey, stuffing.... and yes it makes me hungry just thinking about it. But l know that I must start early - each year even earlier than the last if I truly want to make all of those goodies, getting them all packed up with bows and in beautiful sacks, boxes or containers to give out to our neighbors. I recall the first year not too long ago when we did it, I had made like 5 different types of quick breads, fudge, fruit cakes, candies and cookies with ribbons and cards tucked away for remembering our neighbors and to bring good cheer to those who surround us with their friendship truly is throughout each year. We have wonderful neighbors. They do some great things for us during the year and we try to reciprocate with the baking and cooking.
It is also getting close to that time we make our "New Years Resolutions" or more like rather than "resolutions" trying to set "goals" for 2015. Of course after March 26th, 2014, and all that transpired on that one fateful day; as I sat gracefully awaiting Jim to arrive in Washington DC, those words still ring in my head that "your husband has been in a very severe car accident". He was "ran over" by an 18 wheel tractor trailer...
At that very second, I knew that ALL of my "goals" for 2014 just were blew out of the window, thrown in the street, and ran over by a bus... train and then hit by a plane... Of course goals were the very last thing on the agenda once all of that hit.... every and any plans I had made for this year went out the window, bath water, tub, soap, and almost the baby... if you take the old saying to heart. ;)
So, the very last thing I want to do for 2015 is make "grand plans" only to be on the floor again, cleaning up the mess. Lord knows this year has been a ball of twine, rolled and knotted, with no signs of ever getting it ready to crochet a sweater from.
Thus, I with much hesitation begin thinking about my "gifts" for 2015. My hopes are that I do get to put as much of myself into the throws of activism, ambassadorship, volunteer work, and advocacy for all of us. We definitely NEED many, many more "educated" people when it comes to the world of Arthritis "101"!!! As a friend of mine and myself had an email conversation a couple of weeks ago, it continues to overwhelm me just how many people in our world, very well educated at that, do NOT get "ARTHRITIS" & all of our Autoimmune issues.
Many of the specialists we go to that are supposed to BE SPECIALISTS in these fields and have the knowledge to HELP US. YET, many of them are NOT educated, especially on the latest of technology, advancement in medications, & having so many clinical trials that have came into play, BUT we still don't have many of the answers we continue to search for.
I believe as "patients", loved ones, and close friends, we are "drawn like moths to a flame" when it comes to anything we can "throw" at an arthritic illness, autoimmune illness, chronic pain and/or other medical issues. We tend to spend more time researching these new ideas in science.
From a supplement, to an older drug used for malaria, to a brand new biologic making its debut in the news. We have made some head way by turning back the clock, starting over at the beginning of when it first arrived. I am not sure if I believe in some of the stronger more advanced biologic medications. Some of the side effects that seem to be almost worse than the diseases, illnesses and syndromes themselves.
So, as I am contemplating the things that so far have been "diced, sliced and served up" on my "plate" for 2015, my hope is that I will be able to continue to do those, along with find the place where my "voice" is for my next book. I had made myself a wager, that I would at least complete 75% of the 3rd book by the end of this year. Alas, as I began stating in this post, never will I again allow myself to get so overly thrilled with the idea of finishing the 3rd book that I forget the many factors that can "over throw" your ideas. And if they can, and do... they will.
I pray that I DO get to write that book. It maybe the last one I complete, but I will be always trying to strive to write daily, no matter to be published something once again. Life begins where it wants to... sometimes and then it takes you further and further into the realms of distant waters, surrounding you with ocean waves and not one iota of land in sight. After days and days the clouds roll away, the thunder and stormy waters return to a calmness, and "Voila'" you are back on the correct path again, with the sun shining on your face.
Cherish those moments.... never let anyone or anything keep you from "your own dance".....
:I will be adding my "list" of things I would love to see me get my "teeth into" firmly.... not as in a vampirical status, but in the place that I can "taste" what I have been put here to do... help others...
My bones, joints and most of my body HATE the cold, aching, throbbing feelings that are the "bad" stuff following along with the good.
I LOVE to bake! I have always loved to bake anything sweet. From cakes, pies, cookies, cobblers, and the calories that go along with fudge, peanut brittle, and the confections that almost feel like they are going straight to my hips as I just think about them.
Alas, the fight against pain, fatigue, and stress versus the fun of baking, cooking, and the heavenly sweet potatoes, gravy, ham, turkey, stuffing.... and yes it makes me hungry just thinking about it. But l know that I must start early - each year even earlier than the last if I truly want to make all of those goodies, getting them all packed up with bows and in beautiful sacks, boxes or containers to give out to our neighbors. I recall the first year not too long ago when we did it, I had made like 5 different types of quick breads, fudge, fruit cakes, candies and cookies with ribbons and cards tucked away for remembering our neighbors and to bring good cheer to those who surround us with their friendship truly is throughout each year. We have wonderful neighbors. They do some great things for us during the year and we try to reciprocate with the baking and cooking.
It is also getting close to that time we make our "New Years Resolutions" or more like rather than "resolutions" trying to set "goals" for 2015. Of course after March 26th, 2014, and all that transpired on that one fateful day; as I sat gracefully awaiting Jim to arrive in Washington DC, those words still ring in my head that "your husband has been in a very severe car accident". He was "ran over" by an 18 wheel tractor trailer...
At that very second, I knew that ALL of my "goals" for 2014 just were blew out of the window, thrown in the street, and ran over by a bus... train and then hit by a plane... Of course goals were the very last thing on the agenda once all of that hit.... every and any plans I had made for this year went out the window, bath water, tub, soap, and almost the baby... if you take the old saying to heart. ;)
So, the very last thing I want to do for 2015 is make "grand plans" only to be on the floor again, cleaning up the mess. Lord knows this year has been a ball of twine, rolled and knotted, with no signs of ever getting it ready to crochet a sweater from.
Thus, I with much hesitation begin thinking about my "gifts" for 2015. My hopes are that I do get to put as much of myself into the throws of activism, ambassadorship, volunteer work, and advocacy for all of us. We definitely NEED many, many more "educated" people when it comes to the world of Arthritis "101"!!! As a friend of mine and myself had an email conversation a couple of weeks ago, it continues to overwhelm me just how many people in our world, very well educated at that, do NOT get "ARTHRITIS" & all of our Autoimmune issues.
Many of the specialists we go to that are supposed to BE SPECIALISTS in these fields and have the knowledge to HELP US. YET, many of them are NOT educated, especially on the latest of technology, advancement in medications, & having so many clinical trials that have came into play, BUT we still don't have many of the answers we continue to search for.
I believe as "patients", loved ones, and close friends, we are "drawn like moths to a flame" when it comes to anything we can "throw" at an arthritic illness, autoimmune illness, chronic pain and/or other medical issues. We tend to spend more time researching these new ideas in science.
From a supplement, to an older drug used for malaria, to a brand new biologic making its debut in the news. We have made some head way by turning back the clock, starting over at the beginning of when it first arrived. I am not sure if I believe in some of the stronger more advanced biologic medications. Some of the side effects that seem to be almost worse than the diseases, illnesses and syndromes themselves.
So, as I am contemplating the things that so far have been "diced, sliced and served up" on my "plate" for 2015, my hope is that I will be able to continue to do those, along with find the place where my "voice" is for my next book. I had made myself a wager, that I would at least complete 75% of the 3rd book by the end of this year. Alas, as I began stating in this post, never will I again allow myself to get so overly thrilled with the idea of finishing the 3rd book that I forget the many factors that can "over throw" your ideas. And if they can, and do... they will.
I pray that I DO get to write that book. It maybe the last one I complete, but I will be always trying to strive to write daily, no matter to be published something once again. Life begins where it wants to... sometimes and then it takes you further and further into the realms of distant waters, surrounding you with ocean waves and not one iota of land in sight. After days and days the clouds roll away, the thunder and stormy waters return to a calmness, and "Voila'" you are back on the correct path again, with the sun shining on your face.
Cherish those moments.... never let anyone or anything keep you from "your own dance".....
:I will be adding my "list" of things I would love to see me get my "teeth into" firmly.... not as in a vampirical status, but in the place that I can "taste" what I have been put here to do... help others...
Sunday, October 12, 2014
PERSONALLY - World Arthritis Day...
Personally, I've not put much up for WAD! I have been so busy wanting to get pertinent information out there from the URL's and so on, that I haven't taken the time to "step up" to the plate and give my own feelings, impressions, and how things are looking for myself and my own issues with Arthritis, both Osteo and RA. My other AI's from Raynaud's to Sjogren's, from Lupus to MCTD, from the upheavel of medications that we are constantly changing to try and find a combination that "works" for me, doctors, new symptoms, how my Medicare Advantage Plan appears to be taking a run for my money next year I fear, to all of the "busi-ness" of life, of the accident of course we are still dealing with, left right and center, to my own personal issues with my writing, and what I want to do at home, versus what my body "thinks" I should do.
My Sjogren's issues are far from over. I still have another at least 6 weeks possibly more, before I am able to really stand to keep them in my mouth all day long, eat with them, and adjust to how they feel. I am learning to
keep them in to eat now, but the bottom plate just does not cooperate as it should. Once those mini implanted pins are set into my bone, that is supposed to stablize the plates, both top and bottom, thus I so hope and pray that is true. I know if this does not do the trick and gets them where they are more comfortable, I may be like my Mom, and have to take them OUT when she eats!!! LOL! I always wondered why when we go out to eat, (she has partial plates not full ones) that she takes both of them out. Now I totally know why she does it. When I eat of course food sticks in them, much like your own teeth BUT, it is not exactly the same. It is much more difficult to get food out of the plates once it gets underneath them and all that packs underneath them. The ONLY way to get it out, is to excuse yourself to the lavatory and clean them out. I would much rather do that though and eat with them in, rather than have them lying on the table as I eat!!! Kind of defeats the entire purpose of having them, and going through all of the trouble, time, pain, and suffering to reach the goal.
The weather is REALLY reeking havoc with many of us. I know here in Central TX we are having a dramatic change in temperature, of humidity even during one day. The humidity might be almost 100% in the morning, and by the afternoon drop to 30 percent. Plus the days are beginning to get "shorter" and I just not am adjusted to the longer days. It really does suck, or at least for myself, it sucks to have yourself in the midst of a change just about the time, your internal clock sets itself.
The Sulfasalazine, which I thought we would be up to 3,000 mg by now. Yet, due to lack of communication between my Rheumatologists nurse, myself and my Rheumatologist had not realized he told me to take 2 of the pills - 1 at a time for the first 14 days. Then begin taking 2 pills at a time, twice daily. They are 500 mg tablets... so two of them make 1,000 mg a day, then I was to take 1,000 each time and read I could go up to 3 of the pills twice daily, which is usually what an RA patient works up to after a few weeks of the medication. So, 3 at a time would be 1,500 mg and time 2, make 3,000 mg a day. I already know my blood work was okay, because my PCP ran it for my Rheumatologist, and they told me the results when they were faxing it over to the Rheumy.
I am getting quite disenchanted with the biologic medications. First of all, my insurance can't make up its mind which ones it wants to pay for and which not. They used to pay for Humira, Enbrel and Orencia. But, they did NOT pay for Simponi, and when it is an infusion, it is hit and miss as to how and what they pay honestly. I've already tried Rituxan, and the last round, is when I came down so ill with the double pneumonia. Even though I am almost positive the medication only played a small part in the illness, with all that was going on there, my Rheumatologist is not really thrilled about taking a chance again with a biologic that seemed to contribute to me having infections. I show to already be having some chronic lung issues from what the Xrays show from the pneumonia, and it is kind of like an asthmatic chronic COPD thing, although smoking also probably has little to do with it. I smoked a total of about 10 years, and never over 1/2 pack day, most of the time less. I've quit all together, and even though we still have the "e-cigarettes", I am not even really using those. I just am not having any type of "craving" for them. Some days when I am really in horrible pain, and/or really badly stressed out, I may think to myself, damned I wished I had a cigarette, but other than that I could care less. Of course for me, I could go and buy a pack, put them away, and just smoke one when one of those "moments" come... I probably would not even smoke an entire pack in a month, probably more like two months... but if some people have even one, then they have to have it all over again... strange as it sounds its true.... Kind of all an alcoholic or any type of an "addiction" one might have... some people just cannot be satisfied with a tiny bit, and then leave it alone for a long while. Only using that, whatever it may be, only on those horrid days or moments that life feels like it is pulling itself right on over the top of you, and the darkness continues to grow and fill in like a dark black, no way see through ink or pain.
I've been working on some other "volunteer, activist, advocate, ambassador type of projects", in between all of the doctors, medications. lawyer junk, paperwork, pain, and feeling generally like hell lately. I feel like I have found a couple of places, beside my blog and Facebook pages to truly help others and bring more awareness to all, especially when it comes to our health care laws, Capitol Hill, Congress, and all that can involve. I have come face to face, and toe to toe, with my Federal Congressional Representative Barton, and some of his staff. I have also been trying to find contacts in the office of our Senators here in TX. Actually I am trying to get the attention of both our Federal and our State Legislatures!!
Wow, talk about an education to learn how the wheels (clogs), (clocks esp. cuckoo) ,the bureaucratic bunch of bull red tape, the bend over and kiss butts groups, and talk about really learning how the "cow chews the cud" - I have so seen with my own eyes thinking that I was "up" on the political scene. Well, I have definitely found I had more to learn when it came and will continue to come face to face with the entire ordeal, full circle of how MUCH politics effects EVERYTHING!!! From business, to taxes, from your home, to your safety, from flying to riding in a car, from makeup to your hair coloring, from the BC powder I take, to the prescriptions medications.
It just amazes me the older I get, the more I know, and the more I have to learn about. There is never a day that goes by, that this old dog' seems to learn a few new tricks! I believe that is a portion of your "legacy" of having chronic illnesses, especially Autoimmune Illnesses. You are just given over a brand new educative process... because if you wait to let our "health care nation" educate you, more than likely you will NEVER understand a damned thing that is wrong with you, physically, mentally, emotionally... and within your world. Our "world" in the autoimmune "bu-si-ness", it a totally realm of birth right that has light and dark at the same time shining and blacking out our psyche. If you EVER ARRIVE at that MOMENT you "get it"... you can bet within 24 hours, all you figured out will be shot down, and went to hell in a hand basket, if it has a thing to do with AI diseases, syndromes, illnesses.... have you ever wondered what the difference it is between an "illness", a "syndrome" and a "disease"? I have given thought to it, but up until this minute I guess never decided it was a huge enough ordeal to look it up. But, since I am sitting on that "needle" the proverbial one in the hay stack... I am headed to "google" the differences. I will post them below, before I go on with my blog post.
All of these did come out of a "medical dictionary online"---
My Sjogren's issues are far from over. I still have another at least 6 weeks possibly more, before I am able to really stand to keep them in my mouth all day long, eat with them, and adjust to how they feel. I am learning to
keep them in to eat now, but the bottom plate just does not cooperate as it should. Once those mini implanted pins are set into my bone, that is supposed to stablize the plates, both top and bottom, thus I so hope and pray that is true. I know if this does not do the trick and gets them where they are more comfortable, I may be like my Mom, and have to take them OUT when she eats!!! LOL! I always wondered why when we go out to eat, (she has partial plates not full ones) that she takes both of them out. Now I totally know why she does it. When I eat of course food sticks in them, much like your own teeth BUT, it is not exactly the same. It is much more difficult to get food out of the plates once it gets underneath them and all that packs underneath them. The ONLY way to get it out, is to excuse yourself to the lavatory and clean them out. I would much rather do that though and eat with them in, rather than have them lying on the table as I eat!!! Kind of defeats the entire purpose of having them, and going through all of the trouble, time, pain, and suffering to reach the goal.
The weather is REALLY reeking havoc with many of us. I know here in Central TX we are having a dramatic change in temperature, of humidity even during one day. The humidity might be almost 100% in the morning, and by the afternoon drop to 30 percent. Plus the days are beginning to get "shorter" and I just not am adjusted to the longer days. It really does suck, or at least for myself, it sucks to have yourself in the midst of a change just about the time, your internal clock sets itself.
The Sulfasalazine, which I thought we would be up to 3,000 mg by now. Yet, due to lack of communication between my Rheumatologists nurse, myself and my Rheumatologist had not realized he told me to take 2 of the pills - 1 at a time for the first 14 days. Then begin taking 2 pills at a time, twice daily. They are 500 mg tablets... so two of them make 1,000 mg a day, then I was to take 1,000 each time and read I could go up to 3 of the pills twice daily, which is usually what an RA patient works up to after a few weeks of the medication. So, 3 at a time would be 1,500 mg and time 2, make 3,000 mg a day. I already know my blood work was okay, because my PCP ran it for my Rheumatologist, and they told me the results when they were faxing it over to the Rheumy.
I am getting quite disenchanted with the biologic medications. First of all, my insurance can't make up its mind which ones it wants to pay for and which not. They used to pay for Humira, Enbrel and Orencia. But, they did NOT pay for Simponi, and when it is an infusion, it is hit and miss as to how and what they pay honestly. I've already tried Rituxan, and the last round, is when I came down so ill with the double pneumonia. Even though I am almost positive the medication only played a small part in the illness, with all that was going on there, my Rheumatologist is not really thrilled about taking a chance again with a biologic that seemed to contribute to me having infections. I show to already be having some chronic lung issues from what the Xrays show from the pneumonia, and it is kind of like an asthmatic chronic COPD thing, although smoking also probably has little to do with it. I smoked a total of about 10 years, and never over 1/2 pack day, most of the time less. I've quit all together, and even though we still have the "e-cigarettes", I am not even really using those. I just am not having any type of "craving" for them. Some days when I am really in horrible pain, and/or really badly stressed out, I may think to myself, damned I wished I had a cigarette, but other than that I could care less. Of course for me, I could go and buy a pack, put them away, and just smoke one when one of those "moments" come... I probably would not even smoke an entire pack in a month, probably more like two months... but if some people have even one, then they have to have it all over again... strange as it sounds its true.... Kind of all an alcoholic or any type of an "addiction" one might have... some people just cannot be satisfied with a tiny bit, and then leave it alone for a long while. Only using that, whatever it may be, only on those horrid days or moments that life feels like it is pulling itself right on over the top of you, and the darkness continues to grow and fill in like a dark black, no way see through ink or pain.
I've been working on some other "volunteer, activist, advocate, ambassador type of projects", in between all of the doctors, medications. lawyer junk, paperwork, pain, and feeling generally like hell lately. I feel like I have found a couple of places, beside my blog and Facebook pages to truly help others and bring more awareness to all, especially when it comes to our health care laws, Capitol Hill, Congress, and all that can involve. I have come face to face, and toe to toe, with my Federal Congressional Representative Barton, and some of his staff. I have also been trying to find contacts in the office of our Senators here in TX. Actually I am trying to get the attention of both our Federal and our State Legislatures!!
Wow, talk about an education to learn how the wheels (clogs), (clocks esp. cuckoo) ,the bureaucratic bunch of bull red tape, the bend over and kiss butts groups, and talk about really learning how the "cow chews the cud" - I have so seen with my own eyes thinking that I was "up" on the political scene. Well, I have definitely found I had more to learn when it came and will continue to come face to face with the entire ordeal, full circle of how MUCH politics effects EVERYTHING!!! From business, to taxes, from your home, to your safety, from flying to riding in a car, from makeup to your hair coloring, from the BC powder I take, to the prescriptions medications.
It just amazes me the older I get, the more I know, and the more I have to learn about. There is never a day that goes by, that this old dog' seems to learn a few new tricks! I believe that is a portion of your "legacy" of having chronic illnesses, especially Autoimmune Illnesses. You are just given over a brand new educative process... because if you wait to let our "health care nation" educate you, more than likely you will NEVER understand a damned thing that is wrong with you, physically, mentally, emotionally... and within your world. Our "world" in the autoimmune "bu-si-ness", it a totally realm of birth right that has light and dark at the same time shining and blacking out our psyche. If you EVER ARRIVE at that MOMENT you "get it"... you can bet within 24 hours, all you figured out will be shot down, and went to hell in a hand basket, if it has a thing to do with AI diseases, syndromes, illnesses.... have you ever wondered what the difference it is between an "illness", a "syndrome" and a "disease"? I have given thought to it, but up until this minute I guess never decided it was a huge enough ordeal to look it up. But, since I am sitting on that "needle" the proverbial one in the hay stack... I am headed to "google" the differences. I will post them below, before I go on with my blog post.
All of these did come out of a "medical dictionary online"---
Definition of DISEASE :
an impairment of the normal state of the living animal or plant body or
one of its parts that interrupts or modifies the performance of the
vital functions, is typically manifested by distinguishing signs and
symptoms, and is a response to environmental factors (as malnutrition,
industrial hazards, or climate), to specific infective agents (as worms,
bacteria, or viruses), to inherent defects of the organism (as genetic
anomalies), or to combinations of these factors : sickness, illness—called also morbus
Definition of SICKNESS
1: the condition of being ill : ill health
2: a specific disease
Definition of SYNDROME : a group of signs and symptoms that occur together and characterize a particular abnormality
Definition of PHENOMENON (or Phenomena) as in Raynaud's Phenomena
1: an observable fact or event
2: a : an object or aspect known through the senses rather than by thought or intuition b : a fact or event of scientific interest susceptible of scientific description and explanation ....
I really do not feel looking up those even in the medical dictionary helped much. They still all come out to the meaning of the odd... but when I have more time, I know there has to be an in depth reason for calling something a "syndrome", rather than a "disease"... or they would just have called EVERYTHING one word... illness, disease, sickness, syndrome, phenomena, ...
Anyway, I got all off my own thoughts, walked away from the computer and decided to take a long, warm shower. It has cooled off here today and been on of those dreary days of a typical Fall. No sun, all cloudy and our temps have dropped down, and feels like we have had 2 early mornings, at the 57 degree range... Just plain cool first thing in the morning!! And as ALL know or most, BONES and JOINTS that have arthritic issues, or those that have autoimmune illnesses, this time of the year is not our best. Many of us go into almost a "hibernation" mode... We cringe at the thought of the "cold" weather coming in, and the grey days tend to bring on a depressive way of thinking... As we know seasonal depression is always around in the Fall and Winter... and then we have the pressures (if we let them) of the holidays, family, friends, parties, cooking, cleaning and all of that bologna ... as much as we all love family, holidays, friends, and the beauty of the Christmas decorations, trees, all of the sparkling lights... none of that really makes a difference if your body feels like heck... then your holiday spirit feels down in the dumps too.
Around here for me, it has seemingly turned to either feast or famine. I am either running around trying to get everything taken care of, and wondering how I will deal with it all... to the place I am "looking" for stuff to keep be busy. Oh, it is not like I don't have plenty to do, because I can assure you, just right here in the house alone, I have some major projects staring me right in the face.. I really have wanted to redo my entire kitchen, including putting a new counter top on. I was going to just pick one out that is already "pre-made". I noticed they sell them like that at Lowe's.... and it would be perfect for me. I would not have be to concerned about how the heck to do it... it should be more or less pre-pieced for me, and the edges and so forth there to purchase to put the finishing touches on it, I would LOVE to be able to get a TOTAL KITCHEN MAKEOVER!!! New Cabinets at the the doors and hardware, sand all down, brand new handles and pulls... the floor that I've wanted and to repaint it the two blues I've picked out. Then we still have the bathroom that needs the walls completely finished as far as the texture, and even though the lights are up, nothing has been wired in... so the bathfan and all of that I will have to have someone come and help me with that part. I just don't think Jim will ever be able to get back up into the attic again to connect everything. We have it practically finished but that most important part of making sure all is wired in properly, and not going to short out etc... I am not that sure of myself. I've put in water heaters, hung and wired ceiling fans, and done quite a bit of DIY stuff over the years, but between being "eaten alive" by RA, Lupus, Osteo etc... the idea of climbing into the attic and trying to do that sounds like something I should get an expert to do.
Now as far as painting, redoing our music room... getting rid of junk etc... all of those things I will do slowly, and could manage most of it myself... laying the carpet, and then the floor in the kitchen will probably mean getting someone also to help out.
At the time we bought the house, we put a great deal of money in it redoing it. The house was a definite fixer upper, so we redone hardwood floors, completely redid the bathroom even making it twice as big, painted everything inside and out, every room with our "wainscott" look that I am so thrilled with even today. We had to buy all new appliances, had to redo the entire water, sewer, and redo the electrical wiring. The house was in need of so much... and we did manage to do many of the things we planned. As "frugal" as I was though, money ran out before we got through.
I realize this is "NOT" a typical Autoimmune post full of what all is going on physically, mentally and emotionally in regard to illnesses...
But, I also needed to kind of update everyone about where things stand for myself ...
My plans, and one of those IS to WRITE my BOOK!!!! I've been giving some serious thought to exactly what I want to write; along with how I want to do it. I am keeping the title that Jim came up with, because I believe it will fit when all is done..
I got a bit pissed this week. A guy who also wrote a book of poetry, about 80 poems, had an "author's reading" and signing at our library!!! Well, everyone made a huge ordeal out of it, even in our daily newspaper.
YET, when I wrote BOTH books... I had to almost beg to get an article in the paper, and I donated copies to our library... and not one soul ever mentioned me reading them, or doing a signing... and MY TWO BOOKS contain about 3 or 4 times the amount in his...
So, I am NOT going to allow that to happen again. My plans are to MAKE SURE I do a reading and signing of my next one... and I hope to have a "full house" at the library as he did....
Sometimes this world is truly NOT fair....
Okay I close for now with I hope you have reflected today on what World Arthritis Day means to you.... and that if you got to go to events etc... that you did so full of joy and meaning...
Keep watching because they will never get rid of me! :)
Rhia 10-12-2014
Friday, May 30, 2014
Life, Lupus, Symptoms, RA, and Coping... (My Own Pretense Portion 1)
(Portion 1) I began this weeks ago. So, I've decided to post it, some at a time, rather than one huge post... Maybe I, can find some "reasoning" for things that I have questioned through my own writing.... so here it is .... the first portion....
Even though the "title" of this only names "4" items, there are SO many more, that if I posted it all in my title would be as long or longer than my blog post.
Rather than bore myself and everyone else with some title, I much prefer to get right into the "meat", heart and soul of writing this. Many of you have followed my "trail" for a rather long time now. Well, before I had a great deal to so the Facebook, or truly decided to delve into the realms of blogging for a good reason.
As with life, and everyone else, I have underwent changes.... changes in illnesses, changes in life, changes in the way I feel about life, what I want to "accomplish" during the rest of my time here, and we ALL have lists and lists... and if you are anything like myself, I have another list to keep up with the lists. Humans are just that, humans. As I began this, my first portion said we all change our minds, we all have things we have to live with, tolerate, long for, debate, are stubborn about, will give in, and some things in our lives , we tend to have a firm stance, and like that tree with the larger trunk, than any other near it, nothing will move it - not until the heavens and Earth someday are moved.
I've gone through SO MANY "adaptations" since my RA/Lupus/
Sjogren's/Raynaud's.... and oh how the list tends to grow along this past 7 to 8 years. Blood work, physicians, specialists, MRI's, CT's, EMG's, NCS... and it seems those tests with the initials also go on forever. You finally come to realize you are thrilled with you type EMG or any one of the other numerous "initials" for tests that someone, everyone knows what you are talking about! Finally you have found somewhere you don't have to try to type out an entire 15 letter word for a diagnosis or test! Boy, though when you reach that place, sometimes it smacks you right back into thinking, damned this is seriously becoming a way of life. When I know as much about the tests (or at least what those initials mean) as the doctor does, or understand all I am reading about in an article online without having to flip back and forth to "Google" a word, you have reached the point of "Face it, You have one or MORE Autoimmune Illnesses"!
So, we put up with the poking, scanning, tiny little needle like electrodes being put into your muscles, injected, directed, and all types of waves going through you... to this place you think, okay, that has to be the "last one". The last test, the last diagnosis, the last new medication, and NOW finally I can go on with my "life" as I had planned it before all of these turns in the road took place. Guess what? Nope! Not yet! Although maybe, you reach just a couple of things, that need a couple of scans, and only 1 new medication for now.
My body feels like it is on its last "leg"... my mind feels like I have thought every thought that have a been thinking seems as if it leaves me with no other thought that would possibly be "different" or of my own.
I feel submerged in a "vat" of vastness, not knowing if I can breathe or not, do I actually "see" something, feeling something, taste or touch an item, hand, piece of fruit, a fork, spoon, or a human? I am just a wanderer now... wondering as I wander about, never knowing from one moment to the next how to think, what to feel, whether I should "act" normal, or sometimes act as crazy as I have felt in the past two months.
I wished I knew more answers to so many questions that I have "backed up" in my mind. There is this place that seems to be over wrought with all kinds of questions, from things about the wreck, to things about my Advocacy and Ambassador in the Arthritis Foundation.... to my own illnesses... my teeth just seeming to fall out of my mouth due to Sjogren's, and the $8,000.00 it takes to get them fixed.
Even with insurance the BEST I can get would be 60 percent of it paid. Yet, that means trips to Dallas, multiple trips... whereas I already have enough trips there due to the Lupus and RA. There are all of these "new" symptoms, yet I have not been able to be given "why" they are here... why am I so terribly weak, why do I find myself more stiff, and feel as if I can't walk very far without falling... why are all of those happening...
Then there are the brain issues, the forgetfulness, the fogginess, the ability not to spell correctly, and the problems typing that I never seemed to have found out as to why... and I fall asleep all the time... I can be having a conversation and I fall asleep.. I try to watch a movie and I fall asleep... I have found myself just standing on the front porch or deep in thought in the yard and I have literally stood there and basically fell asleep standing. It makes no sense... some seem to think it is lack of sleep for me, but I get more sleep now than I have in a very long time. So, I cannot fathom it being a "lack of sleep".
Even though the "title" of this only names "4" items, there are SO many more, that if I posted it all in my title would be as long or longer than my blog post.
Rather than bore myself and everyone else with some title, I much prefer to get right into the "meat", heart and soul of writing this. Many of you have followed my "trail" for a rather long time now. Well, before I had a great deal to so the Facebook, or truly decided to delve into the realms of blogging for a good reason.
As with life, and everyone else, I have underwent changes.... changes in illnesses, changes in life, changes in the way I feel about life, what I want to "accomplish" during the rest of my time here, and we ALL have lists and lists... and if you are anything like myself, I have another list to keep up with the lists. Humans are just that, humans. As I began this, my first portion said we all change our minds, we all have things we have to live with, tolerate, long for, debate, are stubborn about, will give in, and some things in our lives , we tend to have a firm stance, and like that tree with the larger trunk, than any other near it, nothing will move it - not until the heavens and Earth someday are moved.
I've gone through SO MANY "adaptations" since my RA/Lupus/
Sjogren's/Raynaud's.... and oh how the list tends to grow along this past 7 to 8 years. Blood work, physicians, specialists, MRI's, CT's, EMG's, NCS... and it seems those tests with the initials also go on forever. You finally come to realize you are thrilled with you type EMG or any one of the other numerous "initials" for tests that someone, everyone knows what you are talking about! Finally you have found somewhere you don't have to try to type out an entire 15 letter word for a diagnosis or test! Boy, though when you reach that place, sometimes it smacks you right back into thinking, damned this is seriously becoming a way of life. When I know as much about the tests (or at least what those initials mean) as the doctor does, or understand all I am reading about in an article online without having to flip back and forth to "Google" a word, you have reached the point of "Face it, You have one or MORE Autoimmune Illnesses"!
So, we put up with the poking, scanning, tiny little needle like electrodes being put into your muscles, injected, directed, and all types of waves going through you... to this place you think, okay, that has to be the "last one". The last test, the last diagnosis, the last new medication, and NOW finally I can go on with my "life" as I had planned it before all of these turns in the road took place. Guess what? Nope! Not yet! Although maybe, you reach just a couple of things, that need a couple of scans, and only 1 new medication for now.
My body feels like it is on its last "leg"... my mind feels like I have thought every thought that have a been thinking seems as if it leaves me with no other thought that would possibly be "different" or of my own.
I feel submerged in a "vat" of vastness, not knowing if I can breathe or not, do I actually "see" something, feeling something, taste or touch an item, hand, piece of fruit, a fork, spoon, or a human? I am just a wanderer now... wondering as I wander about, never knowing from one moment to the next how to think, what to feel, whether I should "act" normal, or sometimes act as crazy as I have felt in the past two months.
I wished I knew more answers to so many questions that I have "backed up" in my mind. There is this place that seems to be over wrought with all kinds of questions, from things about the wreck, to things about my Advocacy and Ambassador in the Arthritis Foundation.... to my own illnesses... my teeth just seeming to fall out of my mouth due to Sjogren's, and the $8,000.00 it takes to get them fixed.
Even with insurance the BEST I can get would be 60 percent of it paid. Yet, that means trips to Dallas, multiple trips... whereas I already have enough trips there due to the Lupus and RA. There are all of these "new" symptoms, yet I have not been able to be given "why" they are here... why am I so terribly weak, why do I find myself more stiff, and feel as if I can't walk very far without falling... why are all of those happening...
Then there are the brain issues, the forgetfulness, the fogginess, the ability not to spell correctly, and the problems typing that I never seemed to have found out as to why... and I fall asleep all the time... I can be having a conversation and I fall asleep.. I try to watch a movie and I fall asleep... I have found myself just standing on the front porch or deep in thought in the yard and I have literally stood there and basically fell asleep standing. It makes no sense... some seem to think it is lack of sleep for me, but I get more sleep now than I have in a very long time. So, I cannot fathom it being a "lack of sleep".
Tuesday, May 27, 2014
"Empowerment" When All of Life "Strength" that had Sustained You - Suddenly is Gone - as I Thief in the Night
Honestly, I am here to write, yet I am not sure the words shall even come. The other day I had posted on Facebook and one of my friends there mentioned "I wished I had the knowledge and know how to write things, and say things as you do, Rhia".
I have given thought to that over the past week, and tried to also allow that place, that suddenly was so engrained in me, to be jerked right out from underneath me. The very core of my world was shaken on March 26th 2014.
As many of us, we have events that come into our world "that shake us down into that deep dark cavern" of where we just don't really heed was is going on or not. As the days have gone by, and I have tried to reach into my very soul, and pull out all of the things that are so precious to me, and I mean within myself, I realized even more so that a happening such as the catastrophe like my husbands car crash, not only shook me off my foundation, it has left me in a place of "shock" that I have yet to come out of, I am not sure that anyone else "caught it" or not, but his accident fell exactly one day before my Dad passed away in 2005. If my memory serves me right ( and I cannot say that is does at all) I believe Dad passed away on Easter Sunday, March 27th 2005. It hit me that very evening when we first arrived at Baylor Hospital in Dallas, that it was almost 9 years to the day of these two things happening. In a way, and maybe they also remembered but chose to not say anything either due to the circumstances that were happening at that moment. thus some of my family may have recalled it also. I just have not brought it up, for why at this time pour salt into an open wound, as the saying goes.
In such a very short span of time SO MANY things can change. Until you are thrown into the situation yourself, whatever the circumstances might be, you really cannot imagine ALL of the complexities something like this causes. From me not having my head on straight, and accidentally moving more money from an account than I intended to, so I did not realize that one of my bills that goes through bill pay had not cleared. So, here I was thinking things were fine, then I find out I did too much of a transfer into an account, and then that bill payment came through that I thought already had, so I overdrew my acct. by $.21... I felt so ashamed I was just going to bite the bullet and let it stay and me make it up, but one of the sweetest ladies there happen to have seen it, and asked me what happened. And as I told her, just all of that going on, and I took some money thinking I was good, and put it over into an acct... yet it was more than I really wanted to move, then the bill comes through I thought had been paid days and days before. She as she is, she went to the bank manager and got it reversed for me. But, still, you just don't realize how many things in your life are totally "wrecked" within the wreck I guess you could say, I catch myself looking for my car to go wash it, or now I have a very hard time sitting her at the computer. I was so used to him and I being here across from one another. Even though we may not utter a word to each other for hours, it was just the fact, we were here together. I find myself wandering through this tiny house, and wandering around in the yard, thinking I should just mow it myself. I should be able to mow those basically weeds down... and I need to spread the granules out for the fleas, and spray around the porches, and put ot fire bait, and now I have our bedroom, the ridiculous bathroom, and more over that stupid back room junk catch all room is all going to go. I am going to pitch about 90 percent of it out in trash can bags. I have stuff back there that I will NEVER use what so ever... and I know just from cleaning the windows and laundering the curtains in the other rooms, it just looked and smelled so much more fresh this morning. So, I know allow that pile of crap to go out of there, will again, give me a "new" lease on life.
I just can tell there are some thing that my brain is not quite comprehending... or if I don't have a note or a list (which was already an issue for me) then I am just not on "target".
May 1st, 2014
Ah, the "sounds", Sights", smells, and renewed feelings that come with the rebirth of Spring. The trees opening up their green leaves, as the wildflowers start to pop open. Of course the birds where we are and all of their "voices".... just an amazing sound on a Spring morning just as dawn breaks... and like a silent whisper into a rather loud victory march, the sun comes forth to warm us up once more. Assuredly we can't say that weather has been "odd".... odd, hell, down right insane. I had golf ball sized hail just last week pounding down up us, and you have to wonder are they all practicing with balls of ice for "T-Ball" season... they can absolutely do damage,that is for sure.
although just as quickly as that "rogue" storm marched in, it left us, only to leave a path of destruction from Louisiana to the Florida Panhandle. Yet, on the other side of the nation, California dealing with their the Santa Anna winds and the driving force in fires that burn thousands of acres and hundreds of homes... and they have just barely started.
I've I had tough go of it this past two weeks once again. I have felt lousy and not quite myself, since before I left for DC the last of March. And even half joked about us all going to have pneumonia on the Tuesday we went to the Capitol. It was snowing huge, very wet flakes and it was cold.... even with an umbrella, coat and wrap it was not very pleasant weather to say the least.
What was to follow on that fated trip... came as a shock wave... a tidal of disbelief, and every kind of emotion you could be possibly dream of. I have tried my best to not question, "why"... because if I need to know then it will be revealed to me. I still believe we have the "will" to take our own paths, yet we are somewhat predestend as to what those paths are. I have began to already realize things about me, that I did not know existed, until that day of the accident. And I also realized for the 1st time in my life, it was okay to say "no", I can't. I never thought about me ever "refusing" to help someone, or do something for someone, but I have to had to make those choices these past weeks. I can't be in three places at once, I cannot run on 3 hours of sleep for long, I have to have time to decompress, or I will and am ill. You can throw in the Lupus, Sjogren's, RA, and all of the other issues physically but the point it that I allowed myself to say, yes, yes, yes when I should have been politely saying not this time, but on the next go round I hope to have some sanity back in my life. I continue to find it difficult to even write here... even though I have a billion things to talk about... my new car, which is awesome, the progress Jim has made which is fantastic, Spring coming out, and hopefully getting an oral surgeon closer to begin the journey about my teeth. I can say eventually I will have the prettiest smile I've ever had for sure. I am wide awake, yet I honestly don't want to do this either, and coming from me that is terrible.... I once again have misplaced that inner voice, that keeps me coming back to write over and over again... it has hidden itself now for awhile, and when it finally reveals itself it will have much to do to make up on.
May 26th 2014
It has been awhile... too long really. I've not even truly been here but glad I have come in to see that many people had been following along on my blog lately. I am not sure if they is due to the horrible accident, my wanting to go and then enjoying DC so very much (and I apologize) I WILL talk about it soon. I've just not had the strength to "face" that very last hour or so of that fateful day. Thus trying to tell about ALL of the very incredible things I learned in DC and moreover how many wondrous people I met... it has truly been one of the greatest trips in my life. I surely hope I get "picked" or get into the "platinum status" for Ambassador before next Summit, so I maybe able to go again. I certainly will if the chance arises again.
I've been trying mentally and emotionally with my "reasoning" behind why I am having suck a difficult time of putting words and sentences together.... I am so embarrassed by it, that I have almost am in fear to post anything I write, because my fear is it will not make much sense. I know when I had the pneumonia, I had not been able to type anything that made any sense what so ever. I was terrified the day that happened. That is one say that I was probably more in fear for what was going on with me then any other day I can think of as far as my own self. I was trying to type out an email... I continued over and over to misspell, to type incorrectly, to use the wrong words for what I was trying to say... and as I stood up and realized I was hallucinating so badly... I felt faint but I was hearing things and seeing things. that were not there... I was just walking around the house like a crazy person! I just could not imagine what was happening to me. I had not taken any new meds, I had felt lousy, but I had been fighting a kind of like sore throat thing off and on and felt so drained of energy, but what was causing this so extremely unusual feeling... like I my faint, dizzy, my brain just not "working".... my first thought was to take myself to the Urgent Care Clinic across town. So, Happened Mom had her car that day back so she could go to church that morning, so I called her and let her know something was not right... Thus she came and got me and took me to Urgent Care... Thank goodness, the doctor that saw me happened to also be one of our ER physicians, so that worked out well. He was concerned enough to really send me to ER but then after we saw the lung XRays and he knew I really did not feel like going to ER and further being poked, stuck, blood drawn etc put through another battery of tests, the sent home with probably the say thing he gave me... high powered antibiotics, cough medication, an inhaler, and other pills for my breathing... so fortunately I got home, got on the sofa with my meds and the puppies and we were there all except for the very necessary done... all other stuff was put off until I felt better. Then both my cardiac doctor and my PCP BOTH still here the pneumonia in my lungs. So, I had another round of antibiotics, also my 2nd infusion of Rituxan has been postponed until my lungs are completely clear on an X-ray.... and in the mean time I am hurting like hell due to the lack of a biologic...I t has been a very rouogh 3 or 4 days... Jim is home and he is of course working much harder not having the wheelchair and relying solely on the cane... and me just trying to get used to all of the things that are different now as he takes over a new "home" and new ways to discover how to do things. So, we are "okay" he does to Outpatient Therapy on Wednesday, tomorrow... in Waxahachie..... and for me I am working on getting these teeth all pulled and the "mini implants" put in ... along with insurance to hopefully pay 60 percent of it! Again we take a step forward daily and learn to adapt to this new course... this new pathway of life.....
I have given thought to that over the past week, and tried to also allow that place, that suddenly was so engrained in me, to be jerked right out from underneath me. The very core of my world was shaken on March 26th 2014.
As many of us, we have events that come into our world "that shake us down into that deep dark cavern" of where we just don't really heed was is going on or not. As the days have gone by, and I have tried to reach into my very soul, and pull out all of the things that are so precious to me, and I mean within myself, I realized even more so that a happening such as the catastrophe like my husbands car crash, not only shook me off my foundation, it has left me in a place of "shock" that I have yet to come out of, I am not sure that anyone else "caught it" or not, but his accident fell exactly one day before my Dad passed away in 2005. If my memory serves me right ( and I cannot say that is does at all) I believe Dad passed away on Easter Sunday, March 27th 2005. It hit me that very evening when we first arrived at Baylor Hospital in Dallas, that it was almost 9 years to the day of these two things happening. In a way, and maybe they also remembered but chose to not say anything either due to the circumstances that were happening at that moment. thus some of my family may have recalled it also. I just have not brought it up, for why at this time pour salt into an open wound, as the saying goes.
In such a very short span of time SO MANY things can change. Until you are thrown into the situation yourself, whatever the circumstances might be, you really cannot imagine ALL of the complexities something like this causes. From me not having my head on straight, and accidentally moving more money from an account than I intended to, so I did not realize that one of my bills that goes through bill pay had not cleared. So, here I was thinking things were fine, then I find out I did too much of a transfer into an account, and then that bill payment came through that I thought already had, so I overdrew my acct. by $.21... I felt so ashamed I was just going to bite the bullet and let it stay and me make it up, but one of the sweetest ladies there happen to have seen it, and asked me what happened. And as I told her, just all of that going on, and I took some money thinking I was good, and put it over into an acct... yet it was more than I really wanted to move, then the bill comes through I thought had been paid days and days before. She as she is, she went to the bank manager and got it reversed for me. But, still, you just don't realize how many things in your life are totally "wrecked" within the wreck I guess you could say, I catch myself looking for my car to go wash it, or now I have a very hard time sitting her at the computer. I was so used to him and I being here across from one another. Even though we may not utter a word to each other for hours, it was just the fact, we were here together. I find myself wandering through this tiny house, and wandering around in the yard, thinking I should just mow it myself. I should be able to mow those basically weeds down... and I need to spread the granules out for the fleas, and spray around the porches, and put ot fire bait, and now I have our bedroom, the ridiculous bathroom, and more over that stupid back room junk catch all room is all going to go. I am going to pitch about 90 percent of it out in trash can bags. I have stuff back there that I will NEVER use what so ever... and I know just from cleaning the windows and laundering the curtains in the other rooms, it just looked and smelled so much more fresh this morning. So, I know allow that pile of crap to go out of there, will again, give me a "new" lease on life.
I just can tell there are some thing that my brain is not quite comprehending... or if I don't have a note or a list (which was already an issue for me) then I am just not on "target".
May 1st, 2014
Ah, the "sounds", Sights", smells, and renewed feelings that come with the rebirth of Spring. The trees opening up their green leaves, as the wildflowers start to pop open. Of course the birds where we are and all of their "voices".... just an amazing sound on a Spring morning just as dawn breaks... and like a silent whisper into a rather loud victory march, the sun comes forth to warm us up once more. Assuredly we can't say that weather has been "odd".... odd, hell, down right insane. I had golf ball sized hail just last week pounding down up us, and you have to wonder are they all practicing with balls of ice for "T-Ball" season... they can absolutely do damage,that is for sure.
although just as quickly as that "rogue" storm marched in, it left us, only to leave a path of destruction from Louisiana to the Florida Panhandle. Yet, on the other side of the nation, California dealing with their the Santa Anna winds and the driving force in fires that burn thousands of acres and hundreds of homes... and they have just barely started.
I've I had tough go of it this past two weeks once again. I have felt lousy and not quite myself, since before I left for DC the last of March. And even half joked about us all going to have pneumonia on the Tuesday we went to the Capitol. It was snowing huge, very wet flakes and it was cold.... even with an umbrella, coat and wrap it was not very pleasant weather to say the least.
What was to follow on that fated trip... came as a shock wave... a tidal of disbelief, and every kind of emotion you could be possibly dream of. I have tried my best to not question, "why"... because if I need to know then it will be revealed to me. I still believe we have the "will" to take our own paths, yet we are somewhat predestend as to what those paths are. I have began to already realize things about me, that I did not know existed, until that day of the accident. And I also realized for the 1st time in my life, it was okay to say "no", I can't. I never thought about me ever "refusing" to help someone, or do something for someone, but I have to had to make those choices these past weeks. I can't be in three places at once, I cannot run on 3 hours of sleep for long, I have to have time to decompress, or I will and am ill. You can throw in the Lupus, Sjogren's, RA, and all of the other issues physically but the point it that I allowed myself to say, yes, yes, yes when I should have been politely saying not this time, but on the next go round I hope to have some sanity back in my life. I continue to find it difficult to even write here... even though I have a billion things to talk about... my new car, which is awesome, the progress Jim has made which is fantastic, Spring coming out, and hopefully getting an oral surgeon closer to begin the journey about my teeth. I can say eventually I will have the prettiest smile I've ever had for sure. I am wide awake, yet I honestly don't want to do this either, and coming from me that is terrible.... I once again have misplaced that inner voice, that keeps me coming back to write over and over again... it has hidden itself now for awhile, and when it finally reveals itself it will have much to do to make up on.
May 26th 2014
It has been awhile... too long really. I've not even truly been here but glad I have come in to see that many people had been following along on my blog lately. I am not sure if they is due to the horrible accident, my wanting to go and then enjoying DC so very much (and I apologize) I WILL talk about it soon. I've just not had the strength to "face" that very last hour or so of that fateful day. Thus trying to tell about ALL of the very incredible things I learned in DC and moreover how many wondrous people I met... it has truly been one of the greatest trips in my life. I surely hope I get "picked" or get into the "platinum status" for Ambassador before next Summit, so I maybe able to go again. I certainly will if the chance arises again.
I've been trying mentally and emotionally with my "reasoning" behind why I am having suck a difficult time of putting words and sentences together.... I am so embarrassed by it, that I have almost am in fear to post anything I write, because my fear is it will not make much sense. I know when I had the pneumonia, I had not been able to type anything that made any sense what so ever. I was terrified the day that happened. That is one say that I was probably more in fear for what was going on with me then any other day I can think of as far as my own self. I was trying to type out an email... I continued over and over to misspell, to type incorrectly, to use the wrong words for what I was trying to say... and as I stood up and realized I was hallucinating so badly... I felt faint but I was hearing things and seeing things. that were not there... I was just walking around the house like a crazy person! I just could not imagine what was happening to me. I had not taken any new meds, I had felt lousy, but I had been fighting a kind of like sore throat thing off and on and felt so drained of energy, but what was causing this so extremely unusual feeling... like I my faint, dizzy, my brain just not "working".... my first thought was to take myself to the Urgent Care Clinic across town. So, Happened Mom had her car that day back so she could go to church that morning, so I called her and let her know something was not right... Thus she came and got me and took me to Urgent Care... Thank goodness, the doctor that saw me happened to also be one of our ER physicians, so that worked out well. He was concerned enough to really send me to ER but then after we saw the lung XRays and he knew I really did not feel like going to ER and further being poked, stuck, blood drawn etc put through another battery of tests, the sent home with probably the say thing he gave me... high powered antibiotics, cough medication, an inhaler, and other pills for my breathing... so fortunately I got home, got on the sofa with my meds and the puppies and we were there all except for the very necessary done... all other stuff was put off until I felt better. Then both my cardiac doctor and my PCP BOTH still here the pneumonia in my lungs. So, I had another round of antibiotics, also my 2nd infusion of Rituxan has been postponed until my lungs are completely clear on an X-ray.... and in the mean time I am hurting like hell due to the lack of a biologic...I t has been a very rouogh 3 or 4 days... Jim is home and he is of course working much harder not having the wheelchair and relying solely on the cane... and me just trying to get used to all of the things that are different now as he takes over a new "home" and new ways to discover how to do things. So, we are "okay" he does to Outpatient Therapy on Wednesday, tomorrow... in Waxahachie..... and for me I am working on getting these teeth all pulled and the "mini implants" put in ... along with insurance to hopefully pay 60 percent of it! Again we take a step forward daily and learn to adapt to this new course... this new pathway of life.....
Monday, March 17, 2014
An Autoimmune Arthritic Systemic Life: More on the Continuing Saga of "Rhia's Law" If it ...
An Autoimmune Arthritic Systemic Life: More on the Continuing Saga of "Rhia's Law" If it Will Happen Then It Will Be Rhia...Honestly, when I go back and read some of the things that I've been through, put up with, did do, did not do... and all of the "happen to me... it seems impossible that ONE person could have gone through so much in just 8 years! Of course there were other things well before all of the autoimmune illnesses began, and I thought those were horrible. I had moved several times. From Lancaster CA (Whish I loved and still do), back to TX to have a knee surgery, then from Ennis to Austin TX, where I rehabbed the knee an was ready to take a job, then something happened and I came back to Ft. Worth TX. Well that is when 9/11 happened. So, I quickly got back to Ennis (as quickly as I could at that time), and within 6 weeks was headed for Seattle WA. That is where my entire life changed "for the good". I got somewhat "healthy" ... I had a job a loved!!! .. I was making decent money... had a "man" in my life that I was not really sure of, but I did make good friends with his family, and other people around so by the time he pulled a stunt, went to Florida to see another "friend" who turned out to be a woman he had bought a cell phone to talk to every night. He Thought I did NOT know, but I found all of the bag, box and everything in the trunk of the car when I went o get groceries ... PLUS I KNEW E woULD NECER go through the halls for hours normally each night. He done a quick run through usually that took about 25 minutes and he was back. When it started to be an hour, more than an hour, 2 hours, 3 hours and I confronted him with cell phone box and bag in hand... he admitted he was "planning" to go to FL to "see" his friend... Well hell I am NOT stupid! So, he went all right... but I TOOK MY MONEY out of the acct... and left him ONLY WHAT WAS HIS... (He had already taken some out so he was screwed when he got there, and she really was WEIRD. and kind of not interested in him.... anyway... I thought after having to be "on the run" from a "husband" at that time I was trying to "divorce". The ONLY way I could keep him from abusing me physically, mentally and emotionally, was to GET out of TX! He still FOUND ME twice or three times! Each time I thought I was "safe", someone would tell him, and the next thing I know he is around "haunting" me again. Even after I had been in Seattle for over 4 years, divorced him, he got hold of my phone number and began calling and threatening myself and my "finance" then, Jim. Even when we came back to Texas for my daughters' wedding (his daughter) he had told everyone he would "take care" of both of us while we were there. Finally, some of my daughter's new husbands' "buddies" removed him from the premises and told him to stay the hell away. He had almost killed me several times in the past. I put up and "hid" the abuse for many years. I was scared he would hurt me worse, or the kids, or do something terrible. So, I kept my mouth shut to everyone. No body, but my kids knew it, and I would not allow them to tell anyone. I kept them away at the worst times with their friends. Little did I know he was not only "addicted" to Meth.... I knew he was an alcoholic.... but he had "meth" hidden under our shed in my back yard... lots of it there at the last I was told... I did not find out about the drug abuse until just a few months before I moved back to TX, in 2005! Dad had passed away, and even though I never wanted to leave Seattle I had to come back to help my Mom. By this time the "ex", had not only been "caught" and arrested, but was in jail for a LONG time! So, when we first got here, there was about a year or more we never had to be concerned about him. But, I STILL to this DAY have "night terrors" that I wake up screaming, scared to death he is hurting me and JIM, or hurting me somewhere in town.... I carry mace with me everywhere I go. And I still find myself looking over my shoulders, for him even though I have been away from him since 2001, he still "haunts me"....
But, ALL of that, as HORRIBLE and as bad as it was.... and it was bad... still does NOT compare with what these immune illnesses have done to me.... they have also turned my life inside out, they have caused me to be unable to do SO MANY things, I've so wanted to do... EVEN just EVERYDAY. ordinary things... I am always either dealing with a flare, or a surgery, or getting over an infection, or my mouth full of ulcers and knots, or my throat so sore I cannot stand to drink anything. We make plans and I get ill so we have to cancel them. I am supposed to be taking care of my Mom. And I feel as If sometimes "She" is having to "take care" of me!!! NOW these teeth.... and my vision again being so bad!!! Yet, if I go to the physicians most of them are no further along, so their answers are it is the Lupus, RA, Sjogren's, Raynaud's the medications, like the prednisone, which my own PCP calls it a "necessary evil"... if I have a flare, it is the only thing to help get it kind of under control... THEN when my Rheumatologist FINALLY gets hold of the ONE medication a biologic, that finally "HELPS' with the morning stiffness, the pain in my legs and feet, the stiff and swollen fingers and thumbs, my wrists swollen and joints, the INSURANCE gives me A MAJOR SCREW UP, SO I GO 7 WEEKS WITHOUT MY MEDICATION! Which sent me into 2 MAJOR flares! Along with something that was a bacterial lung infection, which I though I was over, the flares came on, they gave me more antibiotics that caused me to have certain type of "colitis" caused by certain antibiotics, thus it was a nightmare because then my husband gets ill, and it seems we may have also contracted a stomach virus, but we could not find out because it took them A WEEK to get back lab work, rather than go ahead and treat me. Well, they finally "looked" at my lab work and said "nothing was wrong". THIS WAS ON A FRIDAY WHEN I CALLED THEM myself. So, the "FOLLOWING" TUESDAY I get a Call from the same doctors office, and the nurse says " the PA looked at your labs and you DO have a "BACTERIAL YEAST INFECTION IN YOUR COLON" AND they have "called in" medication for it!!!! There is MORE to the story about them, but you can be assured that I am Looking for another PCP!!!
Then of course is the entire matter of my teeth...
All of this is EFFECTING MY invitation to go to Washington DC for the Arthritis Foundation after I was invited to go. Now as I get ready, I am ill again, so I am not sure I will get to go Monday Morning!!!! I am totally devastated over the entire thing... and these are just "pieces" of what is happening... the "book" if I ever get to where I can write it will Tell ALL OF IT for sure!
Thank Goodness I have people praying for me all over the world! Wishing me positive thoughts That I will be "well enough" to go!!!!
What can I Say.. but I am so appreciative of those that are standing beside me holding my hand!!!!
Rhia
But, ALL of that, as HORRIBLE and as bad as it was.... and it was bad... still does NOT compare with what these immune illnesses have done to me.... they have also turned my life inside out, they have caused me to be unable to do SO MANY things, I've so wanted to do... EVEN just EVERYDAY. ordinary things... I am always either dealing with a flare, or a surgery, or getting over an infection, or my mouth full of ulcers and knots, or my throat so sore I cannot stand to drink anything. We make plans and I get ill so we have to cancel them. I am supposed to be taking care of my Mom. And I feel as If sometimes "She" is having to "take care" of me!!! NOW these teeth.... and my vision again being so bad!!! Yet, if I go to the physicians most of them are no further along, so their answers are it is the Lupus, RA, Sjogren's, Raynaud's the medications, like the prednisone, which my own PCP calls it a "necessary evil"... if I have a flare, it is the only thing to help get it kind of under control... THEN when my Rheumatologist FINALLY gets hold of the ONE medication a biologic, that finally "HELPS' with the morning stiffness, the pain in my legs and feet, the stiff and swollen fingers and thumbs, my wrists swollen and joints, the INSURANCE gives me A MAJOR SCREW UP, SO I GO 7 WEEKS WITHOUT MY MEDICATION! Which sent me into 2 MAJOR flares! Along with something that was a bacterial lung infection, which I though I was over, the flares came on, they gave me more antibiotics that caused me to have certain type of "colitis" caused by certain antibiotics, thus it was a nightmare because then my husband gets ill, and it seems we may have also contracted a stomach virus, but we could not find out because it took them A WEEK to get back lab work, rather than go ahead and treat me. Well, they finally "looked" at my lab work and said "nothing was wrong". THIS WAS ON A FRIDAY WHEN I CALLED THEM myself. So, the "FOLLOWING" TUESDAY I get a Call from the same doctors office, and the nurse says " the PA looked at your labs and you DO have a "BACTERIAL YEAST INFECTION IN YOUR COLON" AND they have "called in" medication for it!!!! There is MORE to the story about them, but you can be assured that I am Looking for another PCP!!!
Then of course is the entire matter of my teeth...
All of this is EFFECTING MY invitation to go to Washington DC for the Arthritis Foundation after I was invited to go. Now as I get ready, I am ill again, so I am not sure I will get to go Monday Morning!!!! I am totally devastated over the entire thing... and these are just "pieces" of what is happening... the "book" if I ever get to where I can write it will Tell ALL OF IT for sure!
Thank Goodness I have people praying for me all over the world! Wishing me positive thoughts That I will be "well enough" to go!!!!
What can I Say.. but I am so appreciative of those that are standing beside me holding my hand!!!!
Rhia
Tuesday, January 14, 2014
"Unwell" ... and if you stay long enough, you shall find and see a very different side of me...
....Right Now I know I am a bit IMPAIRED....
cont. from FB post.
... for me it is worth mentioning. I became a HUGE" Matchbox 20 “ fan when I was living in Seattle. I had bought their first two CD’s(and yes then CD’s were still a huge market) LOL! Both of them really had some songs on their that “not only touched me back then” BUT it was as if every word they had written, sang, and played music to spoke to this very inner core of my being. I recall walking on Alki (West Seattle looking over the Sound back to the City) Beach, and I played those two CD’s and could walk for hours. There is something un EVERY song, that Rod Thomas sings that just expresses (even now and especially back then) in which sounded like many of my poems and short prose. My live at that time was such an incredibly wondrous, almost esoteric tempo to it, thus something about most of those lyrics, just reached out and “grabbed” me. Anyone that is a Matchbox Twenty fan, knows the song, “Unwell”. It seemed to be the “theme” of my life at that time! Now, I’m not saying “illness” as far as being physically sick, I really was not “mentally” or “emotionally” challenged either. Yet, for some of those looking outside to within me, may have thought to themselves, she seems a little “Unwell”! The fact was those years in Seattle, especially the last three, were the years that taught me SO MUCH in regards to my strength in all ways, my courage to venture out, to a HUGE city, thousands of miles from any family, or anyone I really “knew” that well; in more ways than I can count, I felt each day, I was “Less” “UNWELL”. Not only all of the above, but I rented my own apartment all by myself (may sound silly to some but for me it was a first; I bought my “own” first “very good” used Honda & knew without any help I could pay my car payment, living expenses, and so on all by myself. I “gained” an independence in my those years more than any other in a lifetime! I interviewed all through the downtown part of the city (LOL! anyone who knows Seattle, knows it has some HUGE hills to go up and down in with very busy city traffic), and in fact had taken two previous jobs I had loved being an apartment manager at both! This new one was at a banking institute and at that time it was MEGA busy due to ALL the interest rates, and the “Fannie May” and all of that boon at that time. I got hired on to help be the assistant to the lady that did all of the last paperwork for home loans. I had to know everything from what a Title Policy needed and looked for, the note, the deed of trust, insurance, flood insurance, all of the truth in lending information….. I was responsible for making sure we had ALL of that paperwork and it was correct before they could “close” on the home loan. We also “sold” off “blocks” of them. Of course that was to have more funds that would ultimately turn into more blocks of loans that were sold off also. You get the picture. My salary was MORE money that I had ever made at any job in my life! Now even though was was a fact, I still had those rent, car and living expenses to think about. But I had figured all of that out and knew I would be fine. :) I got insurance coverage, I kind of worked my “own” hours. I was a morning person. So, I would come in at 7 am, way before any of the rest of them showed up. My direct boss, bless her heart had a young son, she was single, or about to be, and she usually showed up about 9:45 or so. LOL!! That mattered not, because as soon as 8 hours rolled around, I could leave. So, I went home early most days also. )BY THE WAY this is PRE AUTOIMMUNE ILLNESSES DIAGNOSIS) days… I did suffer from severe migraines, did all my life, and they put me down at least 2 days when I had one. Anyway, dream life for me… not rich by no means at all. But, I saved a bit here and there and would buy a new outfit, or treat myself to something like a little TV I bought for my apartment back then, etc. Anyway, I am sure many people that “knew” me then, often wondered if I didn’t have a “screw or two loose”, or was missing a few cards from the deck, a brick or two out of the wall etc… because I was “eccentric”. I “danced” life to my own tunes playing in my head. I wrote more poetry and short prose there than ever. I didn’t have “friends” per se, other than some online that we had known one another for a long time. I dressed as I wanted (at that time I only weighed like 118 pounds and had a waistline that was tiny like Dolly Parton’s… BUT not the “TOP” of the hour glass like she did” HAHAHA!!… I loved clothes and shoes… yet with it just me, and my bills, I bargain hunted on the weekends at the Mall nearby, and bought one thing etc… as I could afford it. Yet, even though I felt “business” dressed, and I was… I honestly believe the supervisor OVER my own supervisor was quite jealous! Never did figure that one out… the ONLY thing I DID figure out is that she was a “backstabbing, manipulating, ladder climbing, crush the persons under you, and a plain “witch” of a boss and a woman. Okay, now to pull all of this “insanity” together… Hey good word for this “insanity” …….LOL!!! That song by Rob Thomas” “ Unwell” was the theme of my life… I even would quote some of it at times when it was appropriate, “Oh, no, I not crazy, I’m just a little “Unwell”… and if you stay you will see a different side of me”. I still “dance to my own “weird” tune inside my head”…. I am NOT one to “go along” with the crowds, and I REFUSE to HURT< BACKSTAB, MANIPULATE …. and all of those other “nasty words” to ANYONE! I am NOT a Ladder climber! And if I did NOT get the “promotion” or raise for some reason, as far as I was concerned, then I needed to do a “better” job… and those things like more money, a further up position, more responsibility… all would come in good time. I remain the same. I will “take up” for the guy or gal being stomped on, I think that is why I just about HATE politics, I am NOT a “used car sale man” (even hough I did do that for a few months in my twenties), … you get the picture… if MY OWN SKILLS, personality, aura, …. does not put me in that place, then I need to “turn my sails” a different direction and get with the winds of change that shall make my sail into my own smooth river happen. There are so many days, that I say just this… I’m not Crazy, I’m just a little Unwell, and if you will stay long enough, you shall see a different side of me…. and it is very true… even here in Facebook, a few of those who have gotten to really “know” ME, not just the illnesses me, etc… but this complex, but simple, conundrum, and dichotomy that makes up the wholeness that I am… of course the “autoimmune illnesses” and age have “changed” me in many ways… yet that creative, tend to flow on a different rivers path “me” is still very much alive and “Well”!!!! “She” does not show up as much as far as to others outside my very personal life very much, yet, if you “stay” a while… you shall see that “different side” of me… … And to “honor” that song… Here are the lyrics… and they just tell a story that was a piece of my lifetime….
"UnWell"
Lyrics written by Rob Thomas off of Matchbox Twenty
"More Than You Think You Are CD"
All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something
Hold on
Feeling like Im headed for a breakdown
And I don't know why
[chorus]
But Im not crazy, Im just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
Im not crazy, Im just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me
Im talking to myself in public
Dodging glances on the train
And I know, I know they've all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow Ive lost my mind
[chorus]
But Im not crazy, Im just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
Im not crazy, Im just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be
Ive been talking in my sleep
Pretty soon they'll come to get me
Yeah, they're taking me away
[chorus]
But Im not crazy, Im just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
Im not crazy, Im just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be
Yeah, how I used to be
How I used to be
Well, Im just a little unwell
How I used to be
How I used to be
Im just a little unwell
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