Let us see how long we can drag out this frustration.
I had another ultrasound done this afternoon, having gone back to the hospital instead of the other "imaging" specialists here in town who did my CT and I was not impressed with them at ALL. Today, we saw two large lymph nodes (yes, even I, not the rocket scientist, but knowledgeable enough to know what I am looking at) on scan. Normally, they are not seen on scan as this large, but can often be seen on a regular basis. However, the tech of course can not tell my anything that she may "think" she sees as she is not qualified to do so, that is the radiologists job. My question is WHY is this taking so long??
This past weekend I had to start yet another round of prednisone or admit to the ER yet again. I received copies of records dating back for the last 5 stays at the local hospital dating back to 2008, for the infamous, non-hernia repair in the same area. This was cleared up in a sense as to the scar tissue being cut away, but only a small, mesh plug used to repair a so-called hernia. Also found in these records was that in 4/10 on an ER visit in which this same area had acted up, a scan showed a DVT, ..... hmmmm ..... why was I not told about this potential danger at the time. This past visit, 5/14 to the ER imaging showed no signs of DVT, but, an irregular EKG, and elevated D-Dimer test, indicating the possible presence of DVT or PE, and multiple "cytes" blood work results in which were elevated and/or low, indicating a problem. That must be what they meant when on follow up they stated your labs came back "relatively normal." WTF is that suppose to mean?? It is either normal or not, and I am not a patient who has ever shown any sort of irregularities in this area of my labs, except on this recent infection called pneumonia in February. I am confused, a bit ticked off, and perhaps need to find myself including Hillary in the fighting process to make sure that I am not being used as a vulnerable oversight when I show up in obvious pain and distress as anyone who knows me, deals with me on a daily basis is wondering how I "do it" these days as these people are stating that they would not know how to keep going day in, and day out, in this fashion, or feeling and looking like I have, SHIT, according to my daughter upon meeting me in the registration area this afternoon.
Ok ... well ... it is almost 8 pm and I have to go to bed as I am exhausted, and tomorrow brings another day at the grind where I am minimally appreciated at best by the uppers recently.
So ... we wait some more. If we don't have any sort of game plan by end of week, my daughter says I am en route to a Phoenix hospital for another opinion.
Peace and Light
et
Tuesday, May 31, 2011
Monday, May 30, 2011
An absolutely EXCELLENT article from the Boston Globe
The following article was sent to me by my cousin, Bridget, who has been one of my most faithful, humorous followers over the past couple of years, in part, because I think she "gets me." I hope she knows how much I appreciate all the sentiment, prayer, humor, and outpouring of love I have felt from her contribution to my fight.
She could not have forwarded this info on soon enough given my latest hit of breathing issues, and my having been in bed, or on the couch since I arrived home from work on Friday, and my daughter wanting to drive me the two hours to a Phoenix hospital in search of a diagnosis. I told her I would consider it after tomorrows ultrasound and potential biopsy. Not knowing if one has anything to do with the other, but having done a little more research into my past medical issues and what is happening now. On to the article ....
The article below, a research study by the Joslin Clinic in Boston, to where I too, was consulted on as a child being diagnosed in 1972, and again, when I was pregnant with my daughter, in 1988-89. I have to agree with a good portion of the article. The very first paragraph having been spoken to me and my parents shortly after my coming out of the coma. Was a tad harsh in my recollection, and I believe played a large part in my behavior as an adolescent. As far as the "mother" statements in the article, I couldn't agree more. I know for me, my mother was the one who was willing to learn, put herself in heart wrenching positions, and no doubt, at times, wanted to kill me herself for being so difficult at times. The pioneering spirit of New England, and her own personal tragedies, gave to her the "this is it, let's deal with it" mentality. She too, would tell you today, that I put more than a few of those gray hairs on her head. We did, however, overcome our differences on my health, and my approach to my life and outcome of such, with respect and admiration, research and live and learn. This having been told to me many times over the years. I don't think anyone but a mother, could totally grasp the magnitude of such an affliction, or blessing as some would call it on a family. My father on the other hand, to this day, has no clue as to not only what I have coped with, what the disease process is or the potential outcome of a day-to-day existence, but believes that I can "throw up my insulin" if I get sick. What does a comment like that tell you about realistic comprehension of what was going on right under his roof, for so many years.
Thanks Bee, for tonights blog entry .... I was running out of bitches .... and this information is totally interesting too, given they are now looking into the stem cell area. I feel like a "trail-blazing" woman having gone beyond some of the US research to undergo my recent treatment against FDA approval, and know that there is hope for change, and cure if we could just get past some of the politics.
Enjoy the read:
http://www.boston.com/lifestyle/health/articles/2011/05/30/joslins_study_of_50_year_diabetes_patients_indicates_what_has_made_them_survive_thrive/?page=1
Peace and Light
et
She could not have forwarded this info on soon enough given my latest hit of breathing issues, and my having been in bed, or on the couch since I arrived home from work on Friday, and my daughter wanting to drive me the two hours to a Phoenix hospital in search of a diagnosis. I told her I would consider it after tomorrows ultrasound and potential biopsy. Not knowing if one has anything to do with the other, but having done a little more research into my past medical issues and what is happening now. On to the article ....
The article below, a research study by the Joslin Clinic in Boston, to where I too, was consulted on as a child being diagnosed in 1972, and again, when I was pregnant with my daughter, in 1988-89. I have to agree with a good portion of the article. The very first paragraph having been spoken to me and my parents shortly after my coming out of the coma. Was a tad harsh in my recollection, and I believe played a large part in my behavior as an adolescent. As far as the "mother" statements in the article, I couldn't agree more. I know for me, my mother was the one who was willing to learn, put herself in heart wrenching positions, and no doubt, at times, wanted to kill me herself for being so difficult at times. The pioneering spirit of New England, and her own personal tragedies, gave to her the "this is it, let's deal with it" mentality. She too, would tell you today, that I put more than a few of those gray hairs on her head. We did, however, overcome our differences on my health, and my approach to my life and outcome of such, with respect and admiration, research and live and learn. This having been told to me many times over the years. I don't think anyone but a mother, could totally grasp the magnitude of such an affliction, or blessing as some would call it on a family. My father on the other hand, to this day, has no clue as to not only what I have coped with, what the disease process is or the potential outcome of a day-to-day existence, but believes that I can "throw up my insulin" if I get sick. What does a comment like that tell you about realistic comprehension of what was going on right under his roof, for so many years.
Thanks Bee, for tonights blog entry .... I was running out of bitches .... and this information is totally interesting too, given they are now looking into the stem cell area. I feel like a "trail-blazing" woman having gone beyond some of the US research to undergo my recent treatment against FDA approval, and know that there is hope for change, and cure if we could just get past some of the politics.
Enjoy the read:
http://www.boston.com/lifestyle/health/articles/2011/05/30/joslins_study_of_50_year_diabetes_patients_indicates_what_has_made_them_survive_thrive/?page=1
Peace and Light
et
Sunday, May 29, 2011
No energy for even frustration
Remembering this Memorial Day ....
So my frustration is minimal at best.
I am so wiped out just from trying to breathe, never mind walk and talk at the same time. There is something wrong and I am beyond frustration now with what it could be, or why the staff at the local hospital, the doctor, and anyone else who has had their hand in this scenario over the past 8-9 months. I can't think straight, in part due to a lack of breath, which no doubt means not enough oxygen. I began taking prednisone again this morning, only I am not going to be taking it in the high doses started previously. There has been some mild relief, but then too, I have been up all night, and spent all day sleeping on the couch. I get dizzy if I move to fast, hahahah ... like I couldn't get out of my own way if my life depended on it. My daughter apparently talking with her nursing staff last night at work, was suggested that perhaps if not better in the next few days or sooner, that we take a trip to Phoenix and have a more experienced, larger facility do a once over. It would seem that the local hospital, due to budget cuts, staff cuts, etc. is becoming known again as "Yava-die." I have been saying for months, listening to the happenings there with patients and expectations of staff that pretty soon there will be a major law suit. I am hoping it is not mine, but I am seriously considering such due to the length of time issues have gone untreated, and untreated successfully, yet the price to me, not only physically, emotionally, but financially, is beyond belief. ENOUGH!!!
I am scheduled to undergo another ultrasound on Tuesday afternoon here at this local hospital. If nothing is found or investigated to determine what the hell is going on. I will seek that second opinion with all records and results in tow. This latest, or continued down slide has in no way, anything to do with my stem cell treatment. In fact, it is my opinion that had I not had my stem cells I would be in much worse shape right now, if not dead!! It is, at this very moment, I just feel beat, depressed is sort of an understatement, as I do try and remain optimistic, but with the whole just trying to breathe, and getting through a day at work, which BTW, this past week I only made 3 days of 8 hours, and back to falling asleep shortly after arriving home. This is NOT life, especially if you knew the work atmosphere where I am employed. NEVER, in all my years of working, even as a teenager, have I met so many people, work so hard at doing nothing and getting kudos for it while complaining they "don't have the time" or blaming others for why they can't get their jobs done. It is such BS that hell, if I am going to die off soon, I might as well do it while on EIT time, or short-term disability. I'm contributing to killing myself by working for a company who doesn't give a crap about their employees. Although it might seem this has become the American Way. I recently said to HT that I believe this country has really declined in all aspects of life, and what is good. What was once the American Dream, has (in my opinion) turned into American Greed .... hhhmmmmm from where I sit, this is only working for very few, and they reside way up top, looking down on how to screw the little guys. It brings me to a story I just saw on the news a little while ago, about all the people who are suffering following the twisters that have ravaged the mid-section and south this past couple of weeks. Where is their help? This country hasn't followed through on the "words" spoken to those who were effected by Katrina, how many years ago was that now??? It is totally disgusting .... you can't believe anything that is spoken by our government, on any level these days. Along with all those suffering people, children, etc. we have our troops, our Veterans, none of them being cared for in a manner that even remotely measures up to what they, and their families have sacrificed for us, the little people. The health of, the mental health of, our military families are some of this countries most poor. How sad is that ..... ??
I don't know, it would seem that what I am fighting for is never going to happen, and the frustration levels I have encountered, loop holes, political BS, and misinformation is and has become the norm. It will take more than what I can dish out to make any sort of difference, or bring about change.
So ... this has nothing to do with me really, but on this special holiday ... try and reflect what this country was based on, the people who came from other parts of the world to make a new life, not always good, not always bad, but they knew what it was to work hard, protect family, etc. Let's reflect on the ultimate sacrifices made so that we can speak our minds, practice multiple religious beliefs, our freedoms .... and what we could do for them now to not just say Thank you, but perhaps make a gesture that would truly make a difference, be felt, and much appreciated.
Thank You!!
In Peace and Light
et
So my frustration is minimal at best.
I am so wiped out just from trying to breathe, never mind walk and talk at the same time. There is something wrong and I am beyond frustration now with what it could be, or why the staff at the local hospital, the doctor, and anyone else who has had their hand in this scenario over the past 8-9 months. I can't think straight, in part due to a lack of breath, which no doubt means not enough oxygen. I began taking prednisone again this morning, only I am not going to be taking it in the high doses started previously. There has been some mild relief, but then too, I have been up all night, and spent all day sleeping on the couch. I get dizzy if I move to fast, hahahah ... like I couldn't get out of my own way if my life depended on it. My daughter apparently talking with her nursing staff last night at work, was suggested that perhaps if not better in the next few days or sooner, that we take a trip to Phoenix and have a more experienced, larger facility do a once over. It would seem that the local hospital, due to budget cuts, staff cuts, etc. is becoming known again as "Yava-die." I have been saying for months, listening to the happenings there with patients and expectations of staff that pretty soon there will be a major law suit. I am hoping it is not mine, but I am seriously considering such due to the length of time issues have gone untreated, and untreated successfully, yet the price to me, not only physically, emotionally, but financially, is beyond belief. ENOUGH!!!
I am scheduled to undergo another ultrasound on Tuesday afternoon here at this local hospital. If nothing is found or investigated to determine what the hell is going on. I will seek that second opinion with all records and results in tow. This latest, or continued down slide has in no way, anything to do with my stem cell treatment. In fact, it is my opinion that had I not had my stem cells I would be in much worse shape right now, if not dead!! It is, at this very moment, I just feel beat, depressed is sort of an understatement, as I do try and remain optimistic, but with the whole just trying to breathe, and getting through a day at work, which BTW, this past week I only made 3 days of 8 hours, and back to falling asleep shortly after arriving home. This is NOT life, especially if you knew the work atmosphere where I am employed. NEVER, in all my years of working, even as a teenager, have I met so many people, work so hard at doing nothing and getting kudos for it while complaining they "don't have the time" or blaming others for why they can't get their jobs done. It is such BS that hell, if I am going to die off soon, I might as well do it while on EIT time, or short-term disability. I'm contributing to killing myself by working for a company who doesn't give a crap about their employees. Although it might seem this has become the American Way. I recently said to HT that I believe this country has really declined in all aspects of life, and what is good. What was once the American Dream, has (in my opinion) turned into American Greed .... hhhmmmmm from where I sit, this is only working for very few, and they reside way up top, looking down on how to screw the little guys. It brings me to a story I just saw on the news a little while ago, about all the people who are suffering following the twisters that have ravaged the mid-section and south this past couple of weeks. Where is their help? This country hasn't followed through on the "words" spoken to those who were effected by Katrina, how many years ago was that now??? It is totally disgusting .... you can't believe anything that is spoken by our government, on any level these days. Along with all those suffering people, children, etc. we have our troops, our Veterans, none of them being cared for in a manner that even remotely measures up to what they, and their families have sacrificed for us, the little people. The health of, the mental health of, our military families are some of this countries most poor. How sad is that ..... ??
I don't know, it would seem that what I am fighting for is never going to happen, and the frustration levels I have encountered, loop holes, political BS, and misinformation is and has become the norm. It will take more than what I can dish out to make any sort of difference, or bring about change.
So ... this has nothing to do with me really, but on this special holiday ... try and reflect what this country was based on, the people who came from other parts of the world to make a new life, not always good, not always bad, but they knew what it was to work hard, protect family, etc. Let's reflect on the ultimate sacrifices made so that we can speak our minds, practice multiple religious beliefs, our freedoms .... and what we could do for them now to not just say Thank you, but perhaps make a gesture that would truly make a difference, be felt, and much appreciated.
Thank You!!
In Peace and Light
et
Saturday, May 28, 2011
Giving Thanks on This Memorial Day Weekend
Greetings to my faithful followers!!
On this Memorial Day Weekend .... I would like to #1 - Thank all those who have given of themselves, their loved ones, etc to defend not only my safety, but my freedom of speech and a few other things I do that would not be possible in other areas of the world. I am forever grateful for your service and sacrifice on my behalf..... and for that, I / we ... should remember ... memorably. I salute you all .... past and present!!!
On another note, given as I have an extra day this weekend to not only push my body and get some much needed things back into place so I can move on to the next project, I can rest and reflect. The last few weeks have been a pure hell for me in regard to getting my body to function at a level that surpasses that of a 90-year-old woman. The inability to breathe at a level that allows for free and fluid movements is frustrating at best. My head has been full of all that allergy crap that makes those who suffer allergies understand. On top of that, all the steroid use, the lymph node swelling and associated maladies that seemed to have moved in to dampen my spirits .... my mind is back to being somewhat blank, a feature in which my daughter is most disappointed as I made almost immediate change for the better right after my stem cell treatment. I am hoping this will be short-lived. Although my endocrinologist was thrilled with my overall numbers this past visit, I, on the other hand, was disappointed I didn't see decline in my A1c. I do know, that it is all directly related to the steroid use, but that still doesn't make me feel better. It is just one more frustration.
With the latest ER visit and related followup visits, and still, no real answers, yet continued weird happenings, i.e., like right now .... my vision has gone haywire again, like that aura sort of stuff you get going on when you suffer from migraines, only I can feel the muscles in my eyes making me feel crossed in the eyes, and then I get dizzy. Hillary swears it is a form of low blood pressure known as orthostatic hypotension as it gets totally undoable if I stand up too fast. Now, for those who know me personally, one could get a vision of me bent over, trying to pull things off the floor level, ass and all and then coming up fast enough to take you right back down again. Yesterday at work, my mouse took a header off the back of the tray under the desk. So I bent forward off my chair, proceeded to crawl under the desk to retrieve the mouse, and bamb ... fell my happy ass right off the chair!!! The whole time seeing "stars" if you will as far as my vision goes. What could I do ... I proceeded to sit there and laugh myself strong again while a couple of coworkers looked and tried to figure out how I landed in such a position.
It is this sort of "cover up" as I am now seeing it, that is bringing me down. I don't want to continue to "piss and moan" about how I don't feel good, it is old, for most of you, but without a doubt, for me!! I try very hard to stay positive, to think that all these issues will pass, as they have in the past, things move forward, life goes on .... but lately, I wonder how long I may be a part of it....?? I take part in this FB page in which transplant recipients talk about what they have been through in regard to the islet transplant, the one in which I was rejected. Now, please, don't take this the wrong way, my goal, as I thought was the majority of this group, was to find a cure!! I am totally thrilled that these folks have made such improvements, being able to go many years now without insulin. However, I am fully aware, more so now than prior, that not all people are candidates for transplants of this manner. One, the antirejection drugs, which were my biggest fear, and I am now so glad I was not taken in as part of the trial. I do not believe I would have fared well. Not only that, I brought to the attention of the board the question about ... what, when this procedure gets FDA approved, will they tell potential recipients??? It takes more than one treatment as it has been proven that one cadaver does not produce enough cells for the transplant to take and be productive. 2. NOT everyone will be eligible for one reason or another, as in my case, a high PRA, making match difficult. Is it fair to lead the public on like this, or for these people, who are amazing in their own right, to now only tout this as the only possible cure??? I have had to step back, due to my frustration levels and the fact that not only in this particular arena, but in my work environment as well, I am frustrated beyond belief with small minded, closed minded, inability to look outside the box and think that there could be more than one way to make the final CURE be a reality for more than just the few who match, or that in the business world, micromanaging doesn't usually work, and causes much stress along the lines of employees who do their job, others jobs, and clean up messes that others create over and over, and yet .... get no appreciation for their efforts, just walked over a little more.
In this aspect, I can see why so many people are frustrated on so many levels today in society. It seems as though (only my opinion at this point) there are no more "sense of pride," "work ethics," moral compass that leads one to do the right thing. It is more ... as doing the right thing, is a matter of who is defining it, and in my opinion, again, it is only defined by those who will benefit first, and only them, and not the big picture, the overall better of the world. Maybe I think on too big a scale, but ... I have been fighting with this small mentality for too long. I can't thank those who I have encountered over the years, doctors, nurses, hospital staff, researchers, people who I have met and become friends, who see the fight at hand, and are open minded to what a potential could mean. It is an issue that I remain passionate about, I am just down, tired, and not sure how to approach the next step. The ultimate vision should be a cure for everyone, not just the ones' who can afford it, or will be the best match, etc .... think about it ... anti-rejections drugs are boku' expensive, not all people react well to them, the match factor, the number of donors needed to make one person a positive "potential" cure ... etc ....
Think about it people .... for anyone who has read research over the years ... the cure is out there and so close. It has been squashed on so many levels at so many times .... not just for diabetes, but for what I feel is cancer, Parkinson's perhaps even AIDS .... so why? .... why? don't the people have this treatment available to them?? I still feel it is the multi-billion dollar cash-cow known as pharmaceuticals!!! we are going to allow them to rule, to run our lives, to kill us all with the side effects which certain agencies let slide and then wind up yanking these great products from the market based on things like "sudden death!!!"
Ok ... well .... I think this ramble has gone on long enough. I try to remain positive, but I must admit, honestly, I feel like I am losing this battle, and in turn, will lose my own battle. I am only one person, a spec in the big scheme of things. I am unsure of how to proceed with this mission I thought I could accomplish in the awareness arena. Life is about to take a new road change .... on so many levels, which road will I take this time? Where will I land? Will I be happy in the end? Will I make a difference, and will anyone really care??
Ok ... well ... More of my own verbiage for me to chew on and ponder ... LOL ..... Thanks to Mrs D. and Aunt Ann for your continued comments and encouragement. Bee and Deb for keeping me in the humor and grounded. Yes, Ann, I am sure, without a doubt my mother would be proud of me .... unfortunately, lately, I am in child mode and would prefer to have her here with me fighting the good fight, or preparing for a trip to the ocean to clear our souls of the negativity. I do thank you for acknowledging her and how she may have felt about me and my fight. She was one of my biggest fans .... and when I am low like this, wish so deeply she was here to talk it all through ... maybe then I wouldn't have to type all this and throw it out into the world wide web areana for all to see and read. However, I do believe, given what I see as to who and where this is all being read, that something I am doing is making a difference somewhere, in someone's life.
A peaceful and enjoyable weekend to all!!!
PEACE and LIGHT
et
On this Memorial Day Weekend .... I would like to #1 - Thank all those who have given of themselves, their loved ones, etc to defend not only my safety, but my freedom of speech and a few other things I do that would not be possible in other areas of the world. I am forever grateful for your service and sacrifice on my behalf..... and for that, I / we ... should remember ... memorably. I salute you all .... past and present!!!
On another note, given as I have an extra day this weekend to not only push my body and get some much needed things back into place so I can move on to the next project, I can rest and reflect. The last few weeks have been a pure hell for me in regard to getting my body to function at a level that surpasses that of a 90-year-old woman. The inability to breathe at a level that allows for free and fluid movements is frustrating at best. My head has been full of all that allergy crap that makes those who suffer allergies understand. On top of that, all the steroid use, the lymph node swelling and associated maladies that seemed to have moved in to dampen my spirits .... my mind is back to being somewhat blank, a feature in which my daughter is most disappointed as I made almost immediate change for the better right after my stem cell treatment. I am hoping this will be short-lived. Although my endocrinologist was thrilled with my overall numbers this past visit, I, on the other hand, was disappointed I didn't see decline in my A1c. I do know, that it is all directly related to the steroid use, but that still doesn't make me feel better. It is just one more frustration.
With the latest ER visit and related followup visits, and still, no real answers, yet continued weird happenings, i.e., like right now .... my vision has gone haywire again, like that aura sort of stuff you get going on when you suffer from migraines, only I can feel the muscles in my eyes making me feel crossed in the eyes, and then I get dizzy. Hillary swears it is a form of low blood pressure known as orthostatic hypotension as it gets totally undoable if I stand up too fast. Now, for those who know me personally, one could get a vision of me bent over, trying to pull things off the floor level, ass and all and then coming up fast enough to take you right back down again. Yesterday at work, my mouse took a header off the back of the tray under the desk. So I bent forward off my chair, proceeded to crawl under the desk to retrieve the mouse, and bamb ... fell my happy ass right off the chair!!! The whole time seeing "stars" if you will as far as my vision goes. What could I do ... I proceeded to sit there and laugh myself strong again while a couple of coworkers looked and tried to figure out how I landed in such a position.
It is this sort of "cover up" as I am now seeing it, that is bringing me down. I don't want to continue to "piss and moan" about how I don't feel good, it is old, for most of you, but without a doubt, for me!! I try very hard to stay positive, to think that all these issues will pass, as they have in the past, things move forward, life goes on .... but lately, I wonder how long I may be a part of it....?? I take part in this FB page in which transplant recipients talk about what they have been through in regard to the islet transplant, the one in which I was rejected. Now, please, don't take this the wrong way, my goal, as I thought was the majority of this group, was to find a cure!! I am totally thrilled that these folks have made such improvements, being able to go many years now without insulin. However, I am fully aware, more so now than prior, that not all people are candidates for transplants of this manner. One, the antirejection drugs, which were my biggest fear, and I am now so glad I was not taken in as part of the trial. I do not believe I would have fared well. Not only that, I brought to the attention of the board the question about ... what, when this procedure gets FDA approved, will they tell potential recipients??? It takes more than one treatment as it has been proven that one cadaver does not produce enough cells for the transplant to take and be productive. 2. NOT everyone will be eligible for one reason or another, as in my case, a high PRA, making match difficult. Is it fair to lead the public on like this, or for these people, who are amazing in their own right, to now only tout this as the only possible cure??? I have had to step back, due to my frustration levels and the fact that not only in this particular arena, but in my work environment as well, I am frustrated beyond belief with small minded, closed minded, inability to look outside the box and think that there could be more than one way to make the final CURE be a reality for more than just the few who match, or that in the business world, micromanaging doesn't usually work, and causes much stress along the lines of employees who do their job, others jobs, and clean up messes that others create over and over, and yet .... get no appreciation for their efforts, just walked over a little more.
In this aspect, I can see why so many people are frustrated on so many levels today in society. It seems as though (only my opinion at this point) there are no more "sense of pride," "work ethics," moral compass that leads one to do the right thing. It is more ... as doing the right thing, is a matter of who is defining it, and in my opinion, again, it is only defined by those who will benefit first, and only them, and not the big picture, the overall better of the world. Maybe I think on too big a scale, but ... I have been fighting with this small mentality for too long. I can't thank those who I have encountered over the years, doctors, nurses, hospital staff, researchers, people who I have met and become friends, who see the fight at hand, and are open minded to what a potential could mean. It is an issue that I remain passionate about, I am just down, tired, and not sure how to approach the next step. The ultimate vision should be a cure for everyone, not just the ones' who can afford it, or will be the best match, etc .... think about it ... anti-rejections drugs are boku' expensive, not all people react well to them, the match factor, the number of donors needed to make one person a positive "potential" cure ... etc ....
Think about it people .... for anyone who has read research over the years ... the cure is out there and so close. It has been squashed on so many levels at so many times .... not just for diabetes, but for what I feel is cancer, Parkinson's perhaps even AIDS .... so why? .... why? don't the people have this treatment available to them?? I still feel it is the multi-billion dollar cash-cow known as pharmaceuticals!!! we are going to allow them to rule, to run our lives, to kill us all with the side effects which certain agencies let slide and then wind up yanking these great products from the market based on things like "sudden death!!!"
Ok ... well .... I think this ramble has gone on long enough. I try to remain positive, but I must admit, honestly, I feel like I am losing this battle, and in turn, will lose my own battle. I am only one person, a spec in the big scheme of things. I am unsure of how to proceed with this mission I thought I could accomplish in the awareness arena. Life is about to take a new road change .... on so many levels, which road will I take this time? Where will I land? Will I be happy in the end? Will I make a difference, and will anyone really care??
Ok ... well ... More of my own verbiage for me to chew on and ponder ... LOL ..... Thanks to Mrs D. and Aunt Ann for your continued comments and encouragement. Bee and Deb for keeping me in the humor and grounded. Yes, Ann, I am sure, without a doubt my mother would be proud of me .... unfortunately, lately, I am in child mode and would prefer to have her here with me fighting the good fight, or preparing for a trip to the ocean to clear our souls of the negativity. I do thank you for acknowledging her and how she may have felt about me and my fight. She was one of my biggest fans .... and when I am low like this, wish so deeply she was here to talk it all through ... maybe then I wouldn't have to type all this and throw it out into the world wide web areana for all to see and read. However, I do believe, given what I see as to who and where this is all being read, that something I am doing is making a difference somewhere, in someone's life.
A peaceful and enjoyable weekend to all!!!
PEACE and LIGHT
et
Tuesday, May 24, 2011
Riding the wave .... again
This is going to be a quick, semi-relief, post ...
Saw the PCP today, not thrilled with what transpired as I have been through this "ride" a couple of times not only with myself, but with my mother as well.
There was "nothing notably abnormal" on the CT. Doc is positive the mass is a lymph node, as am I, just not sure what has it all "blown" up currently as it has been there for almost 3 years now, first being told it was scar tissue, then a hernia, and upon "hernia" repair, being told by surgeon, "I don't think that is what the problem is," However, no guidance, no educated guesses, no directive for follow up ... so I let it be and now I am sitting here with my swollen right leg up on the back of the couch. I am a sexy sight I am .... LOL. The dog is out cold beside me as she too, had a vet appointment today. She fared much better than I even though she got injections in both thighs, she got an excellent bill of health!!
I am looking at a couple of more imaging tests, like another ultra sound. Now this is where I get a little ticked off .... a major money making scam. I was in the ER a little over a week ago (seems like eternity at this point), they did an ultra sound of my right leg looking for a blood clot, when I asked the tech if she could run that probe a little higher and check out the mass, which was also mentioned to the ER doc, she stated "orders are to look for a blood clot, we don't go that high for that." Well ... How f'in stupid is that???
I didn't fall off the truck last night, a blood clot can form anywhere ... especially in the veins and arteries which run through the groin. Why .... WHY do they think people are all stupid!!??? This sort of crap really does elevate my blood pressure as now I must wait for an approval for another ultra sound, the time that takes to clear, then to land an appointment, and again, if something shows, the biopsy, which will require a freaking auth before they do it as well, so it will not be done the same day. Now, why do doctors, insurance companies more, feel it ok to inflict undue anxiety on people? The longer they mess around with this sort of diagnostic BS, I am 1, missing work, 2., still feeling like crap, 3., wondering anxiously about my "stemmie" status, and 4 .... why I still don't feel as good as I did a month after treatment even with pneumonia!!!????
Anyway ... can barely keep my eyes open as I did not sleep very well at all last night, tossing, turning, awake every hour or so, the whole drenching night sweat thing, and sedating myself to what would normally put me to sleep, did not, in double dose. So tonight ..... we SLEEP. .... no help required!!
Thanks to all who follow, suggestions, similar experiences, etc. .... always welcome!!
G'night to all and to all, a G'night!!!
Peace and Light
et
Saw the PCP today, not thrilled with what transpired as I have been through this "ride" a couple of times not only with myself, but with my mother as well.
There was "nothing notably abnormal" on the CT. Doc is positive the mass is a lymph node, as am I, just not sure what has it all "blown" up currently as it has been there for almost 3 years now, first being told it was scar tissue, then a hernia, and upon "hernia" repair, being told by surgeon, "I don't think that is what the problem is," However, no guidance, no educated guesses, no directive for follow up ... so I let it be and now I am sitting here with my swollen right leg up on the back of the couch. I am a sexy sight I am .... LOL. The dog is out cold beside me as she too, had a vet appointment today. She fared much better than I even though she got injections in both thighs, she got an excellent bill of health!!
I am looking at a couple of more imaging tests, like another ultra sound. Now this is where I get a little ticked off .... a major money making scam. I was in the ER a little over a week ago (seems like eternity at this point), they did an ultra sound of my right leg looking for a blood clot, when I asked the tech if she could run that probe a little higher and check out the mass, which was also mentioned to the ER doc, she stated "orders are to look for a blood clot, we don't go that high for that." Well ... How f'in stupid is that???
I didn't fall off the truck last night, a blood clot can form anywhere ... especially in the veins and arteries which run through the groin. Why .... WHY do they think people are all stupid!!??? This sort of crap really does elevate my blood pressure as now I must wait for an approval for another ultra sound, the time that takes to clear, then to land an appointment, and again, if something shows, the biopsy, which will require a freaking auth before they do it as well, so it will not be done the same day. Now, why do doctors, insurance companies more, feel it ok to inflict undue anxiety on people? The longer they mess around with this sort of diagnostic BS, I am 1, missing work, 2., still feeling like crap, 3., wondering anxiously about my "stemmie" status, and 4 .... why I still don't feel as good as I did a month after treatment even with pneumonia!!!????
Anyway ... can barely keep my eyes open as I did not sleep very well at all last night, tossing, turning, awake every hour or so, the whole drenching night sweat thing, and sedating myself to what would normally put me to sleep, did not, in double dose. So tonight ..... we SLEEP. .... no help required!!
Thanks to all who follow, suggestions, similar experiences, etc. .... always welcome!!
G'night to all and to all, a G'night!!!
Peace and Light
et
Monday, May 23, 2011
Another 1st Day Back ...
Hello,
I made it through the day. I am currently exhausted only being home 2 hours. My leg is very uncomfortable. I got a call from the doctor's office, but only to confirm my appointment with her in the morning. I also returned home from work today to find a letter from the insurance company stating that they approved Thursdays CT scan, but would not cover any further tests unless a prior authorization was in place PRIOR to setting a date of service. Now ... here is my take on that one, it would appear that a doctor's order of STAT means absolutely nothing in regard to whether one has insurance or not. That those at the insurance companies, and most of those I will tell you have nothing more than a BS, and that is if we are lucky, calling the shots on MY life, over that of a MEDICAL DOCTOR!!!
Tell me folks, what is wrong with this picture??? I will make sure that someone pays dearly if needed treatment goes undone any longer than it already has. What is the difference in this sort of action in comparison to what some feel is socialist, or communist medical care that goes on in other countries. I have seen this sort of treatment and insurance company BS play out too many times already, and if I too, must be one of thier victims, someone is going to pay, and many are going to hear about it.
I am really tired and am uncomfortable, as my right leg is pretty much been "asleep" since before 3 pm. I will post the so-called findings tomorrow, .... or will try depending on my frame of mind. Hillary and I have had discussions to date, she wants to be with me for my 11:15 appointment, however, an appointment for Maggie had already been made and Hillary will be doing that at 11:30. I will do this one in physical presence, on my own, and knowing I have, again, many people with me in spirit. I know what some of you are thinking, but my Maggie needs to be healthy to look after me as well. She has been in recent weeks sort of clingy and I wonder if it is due to her own allergies, or she senses something wiht me that she can't verbalize. She has been more close, like sleeping on me instead of just near me.
I wish everyone a restful evening ... (If I can't succeed, perhaps you can on my behalf)
Thanks to Mom D and Bee for your comments .... your honesty is much appreciated. :D
Peace and Light
et
PS: I am thinking that in this recent photo of Maggie (above) with a friend of Hilly's, that maybe she doesn't care whose ass she is curled up with .... lol ... she just wants to be one of the girls!!!
I made it through the day. I am currently exhausted only being home 2 hours. My leg is very uncomfortable. I got a call from the doctor's office, but only to confirm my appointment with her in the morning. I also returned home from work today to find a letter from the insurance company stating that they approved Thursdays CT scan, but would not cover any further tests unless a prior authorization was in place PRIOR to setting a date of service. Now ... here is my take on that one, it would appear that a doctor's order of STAT means absolutely nothing in regard to whether one has insurance or not. That those at the insurance companies, and most of those I will tell you have nothing more than a BS, and that is if we are lucky, calling the shots on MY life, over that of a MEDICAL DOCTOR!!!
Tell me folks, what is wrong with this picture??? I will make sure that someone pays dearly if needed treatment goes undone any longer than it already has. What is the difference in this sort of action in comparison to what some feel is socialist, or communist medical care that goes on in other countries. I have seen this sort of treatment and insurance company BS play out too many times already, and if I too, must be one of thier victims, someone is going to pay, and many are going to hear about it.
I am really tired and am uncomfortable, as my right leg is pretty much been "asleep" since before 3 pm. I will post the so-called findings tomorrow, .... or will try depending on my frame of mind. Hillary and I have had discussions to date, she wants to be with me for my 11:15 appointment, however, an appointment for Maggie had already been made and Hillary will be doing that at 11:30. I will do this one in physical presence, on my own, and knowing I have, again, many people with me in spirit. I know what some of you are thinking, but my Maggie needs to be healthy to look after me as well. She has been in recent weeks sort of clingy and I wonder if it is due to her own allergies, or she senses something wiht me that she can't verbalize. She has been more close, like sleeping on me instead of just near me.
I wish everyone a restful evening ... (If I can't succeed, perhaps you can on my behalf)
Thanks to Mom D and Bee for your comments .... your honesty is much appreciated. :D
Peace and Light
et
Sunday, May 22, 2011
Another new beginning
Good Evening ...
As I sit here ready to hit the pillows as I have to return to work in the morning. Still in discomfort, still with no word of what we may be dealing with yet, I reflect.
In re-reading yesterday's post, I have come to the conclusion that over the years, my trust in family loyalty was very much misplaced. The only loyalty I needed to be concerned with is no longer here. I made no deathbed promises I couldn't keep, or were totally unrealistic. I did what I promised her I would do, I did for her, what she had done for me since birth, what she would be doing for me today, and that is that. As for the loyalty I was disillusioned into believing over the years that in a bad situation we would all pull together and support each other. Oh, how wrong I was on that one ... LOL ... the saying that you can pick your friends, but you can't pick your family rings so true. I can honestly say, I have, despite the diminishing of the population over the years, some of the best friends a person could ever be blessed with. I am, and will be, forever grateful for that friendship and love.
With that being said, I am not perfect, I have never claimed to be. I have been hurt, I no doubt have hurt, and I do not go out of my way to hurt people intentionally. I have learned over the years that we are who we are, and often times there are people who do not approve or agree with our outlooks. That is fine, if you don't like me, stay away from me. I too, will do the same. I hardly go looking to associate with those who feel it is okay to hurt others to gain for personal benefit. I have always tried to be true to my feelings, not always playing out to the best situations. But, I recall one situation back in the early 90s in which I had a verbal blow up with a family member, or 2-3 and it cast me out for a long time. Oh well, it's too bad that what I was saying was beyond truth and that this person on some level, still today, thinks that she is all that and more, when everyone knew she was a mental case, yet, let's keep the peace. Oh BS!!! There are times in life when I just can't take this sugar coating of people instead of calling them out on the carpet and making them face the actions they put forth and the reactions or effects those "actions" left on others. I'm sorry, I have no regrets on some of my verbal explosions over the years. I even had my PCP back east tell me at this point in time, (90s) that it would be good for me if I did it more often..... LOL ... I have been known to be a "stuffer," and I can tell you, it doesn't always play out pretty. In that, I have learned that by stuffing all these negative feelings usually blows up into exacerbated hurt instead of just throwing it out there when it is happening, dealing with it, perhaps shed some tears, raise your voice, let it be known, and let it go. I can honestly say that in that respect, those that are in my life on a regular basis, knows this is how I prefer to work. I also know, that some of these loved ones are uncomfortable with this method sometimes. However, I do believe, that we all evolve, and grow from these experiences, and therefore, our relationships deepen. It may also be a reason I am still single. I have yet to meet a man, even the ones I call friends today, that can openly just voice their feelings on a subject without a long, often time, no real response, not sure what this is all about, but it is definitely a "Guy thing." :D
Okay ... I am doing a lot of rambling on lately. Not sure my basis for this, I believe it is an uncertainty about my future. I am having a hard time not knowing what my stem cell status is given the latest developments???
I wish everyone a healthy, happy week ahead!!
"Air Hugs" back at'cha Deb ... I love it!!!
Peace and Light
et
As I sit here ready to hit the pillows as I have to return to work in the morning. Still in discomfort, still with no word of what we may be dealing with yet, I reflect.
In re-reading yesterday's post, I have come to the conclusion that over the years, my trust in family loyalty was very much misplaced. The only loyalty I needed to be concerned with is no longer here. I made no deathbed promises I couldn't keep, or were totally unrealistic. I did what I promised her I would do, I did for her, what she had done for me since birth, what she would be doing for me today, and that is that. As for the loyalty I was disillusioned into believing over the years that in a bad situation we would all pull together and support each other. Oh, how wrong I was on that one ... LOL ... the saying that you can pick your friends, but you can't pick your family rings so true. I can honestly say, I have, despite the diminishing of the population over the years, some of the best friends a person could ever be blessed with. I am, and will be, forever grateful for that friendship and love.
With that being said, I am not perfect, I have never claimed to be. I have been hurt, I no doubt have hurt, and I do not go out of my way to hurt people intentionally. I have learned over the years that we are who we are, and often times there are people who do not approve or agree with our outlooks. That is fine, if you don't like me, stay away from me. I too, will do the same. I hardly go looking to associate with those who feel it is okay to hurt others to gain for personal benefit. I have always tried to be true to my feelings, not always playing out to the best situations. But, I recall one situation back in the early 90s in which I had a verbal blow up with a family member, or 2-3 and it cast me out for a long time. Oh well, it's too bad that what I was saying was beyond truth and that this person on some level, still today, thinks that she is all that and more, when everyone knew she was a mental case, yet, let's keep the peace. Oh BS!!! There are times in life when I just can't take this sugar coating of people instead of calling them out on the carpet and making them face the actions they put forth and the reactions or effects those "actions" left on others. I'm sorry, I have no regrets on some of my verbal explosions over the years. I even had my PCP back east tell me at this point in time, (90s) that it would be good for me if I did it more often..... LOL ... I have been known to be a "stuffer," and I can tell you, it doesn't always play out pretty. In that, I have learned that by stuffing all these negative feelings usually blows up into exacerbated hurt instead of just throwing it out there when it is happening, dealing with it, perhaps shed some tears, raise your voice, let it be known, and let it go. I can honestly say that in that respect, those that are in my life on a regular basis, knows this is how I prefer to work. I also know, that some of these loved ones are uncomfortable with this method sometimes. However, I do believe, that we all evolve, and grow from these experiences, and therefore, our relationships deepen. It may also be a reason I am still single. I have yet to meet a man, even the ones I call friends today, that can openly just voice their feelings on a subject without a long, often time, no real response, not sure what this is all about, but it is definitely a "Guy thing." :D
Okay ... I am doing a lot of rambling on lately. Not sure my basis for this, I believe it is an uncertainty about my future. I am having a hard time not knowing what my stem cell status is given the latest developments???
I wish everyone a healthy, happy week ahead!!
"Air Hugs" back at'cha Deb ... I love it!!!
Peace and Light
et
Saturday, May 21, 2011
End of the world ...
As I am still here, coping with all the same BS I was yesterday, and not as well as I expected. I am unprepared, tired, and honestly, scared to death as to how to cope so that my daughter will be taken care of. I know in certain aspects, she is and will, knowing those that truly love her without the restrictions and tallying of who did what for who over her head. She already has more going for her than MOST her age.
I still have had no call on results of the CT, and the insurance company is apparently going to be an issue. If what is being "suspected" becomes reality, there is going to be a lawsuit, and I will win. The woman who acted as my PCP for several years had multiple mis-steps in diagnoses over the years, one landing her a letter from my endocrinologist, whom she felt she knew more than as a Physicians Assistant, and calling me noncompliant for refusing her instructions. She never truly examined the area in question prior to shipping me off for surgery and therefore, I am going to have her charged with negligence along with a couple of other things.
Hillary and I were talking this morning, too emotional. Not that I would expect any one of my siblings, or thier spoiled offspring to make any sort of connection, Hillary will without a doubt, tear a new oriface to any one of them looking for information. They should be careful of the term Karma, in which I have heard the kids throw around, as they have turned out to be very selfish human beings. Not one of them knew their grandmother on a level that my Hillary does/did, or me either for that matter, and never will. My daughter has more knowledge of family history, on so many levels, health, personal, and some of my brothers encounters as well, I don't believe she has ever held this against them as they have turned on me, her mother., and allowed for her to be shut out. SHE has done nothing wrong, but don't think for a minute, she can't hold her own when approached by an adult, unlike some of the offspring. It was okay to just turn and go about your business because my mother was no longer on this earth, leaving me and Hillary to deal with my father, because in their words, "I'm not taking care of him, he was an asshole to us growing up." Now really, LMAO ..... I can't help but laugh when I read this statement in print coming from grown, adult men, pushing 60!!! "childhood issues" .... holy crap!! Hillary has been stepping up more and more lately to help me with him, and he has the capacity to kill us both. Thanks guys for ALL your help. Yes, where my brothers are concerned, I am bitter, disappointed, hurt, and it seems to appear that they will always feel they are right in their actions of this situation, very selfish, childish, and so in need of therapy ... LOL .... as my mother use to say, "Dumb-ass Irish Mentality" .... deny it and it does not exist, so I guess it will all be my fault, except for those who have witnessed the happenings, even met some of my brothers, just to say after the fact, "your brothers seemed like nice guys, but what a bunch of AH's!" .... This really amuses me as I know it isn't me, it is the perception of those that watch from the outside and see it all very clearly. This is no "Walton" family by any means. Motto should be with the going gets tough, the tough get running .... fast, in the other direction, and never look back.
In any event, I can safely say that my brothers will not be a part of this fight, and I don't want ANY negative energy floating around me while I try to fight this, and I am going to be forward by stating this very well may be my last fight. I am very tired, with many things to get information on. I am going to shoot for stem cells to be a part of the treatment, but no doubt until after they kill off every thing else. We will know more this coming week. All I know, is they better get with the program, my aunt was diagnosed with lymphoma and died 2 weeks to the day after diagnosis. We need more info. I have not been well in respect to constantly being tired this past week, the pain which remains from last weeks ER visit, and nausea which has been pretty constant since the prednisone, which is what I associated it with. Apparently too much going on in my body at the same time.
LMAO .... and then wonder why some are predicting the end of the world. Well ... I was all ready to send my naked ass off into the planetary unknown .... yet .... at 6:45 pm ... I still sit here waiting. My dog has been on top of me for over a week, Hillary seems to think she knows something we don/t. I am going to go with she just really loves being close to me. :D
To those who follow, and believe in the more evidence based world. I, again, thank you for your following me. I will be curious as to how I am to manage my diabetes with what is the potential of Tuesdays visit. Sorry this post was sort of rambling .... I have a lot on my mind.
Peace and Light
et
I still have had no call on results of the CT, and the insurance company is apparently going to be an issue. If what is being "suspected" becomes reality, there is going to be a lawsuit, and I will win. The woman who acted as my PCP for several years had multiple mis-steps in diagnoses over the years, one landing her a letter from my endocrinologist, whom she felt she knew more than as a Physicians Assistant, and calling me noncompliant for refusing her instructions. She never truly examined the area in question prior to shipping me off for surgery and therefore, I am going to have her charged with negligence along with a couple of other things.
Hillary and I were talking this morning, too emotional. Not that I would expect any one of my siblings, or thier spoiled offspring to make any sort of connection, Hillary will without a doubt, tear a new oriface to any one of them looking for information. They should be careful of the term Karma, in which I have heard the kids throw around, as they have turned out to be very selfish human beings. Not one of them knew their grandmother on a level that my Hillary does/did, or me either for that matter, and never will. My daughter has more knowledge of family history, on so many levels, health, personal, and some of my brothers encounters as well, I don't believe she has ever held this against them as they have turned on me, her mother., and allowed for her to be shut out. SHE has done nothing wrong, but don't think for a minute, she can't hold her own when approached by an adult, unlike some of the offspring. It was okay to just turn and go about your business because my mother was no longer on this earth, leaving me and Hillary to deal with my father, because in their words, "I'm not taking care of him, he was an asshole to us growing up." Now really, LMAO ..... I can't help but laugh when I read this statement in print coming from grown, adult men, pushing 60!!! "childhood issues" .... holy crap!! Hillary has been stepping up more and more lately to help me with him, and he has the capacity to kill us both. Thanks guys for ALL your help. Yes, where my brothers are concerned, I am bitter, disappointed, hurt, and it seems to appear that they will always feel they are right in their actions of this situation, very selfish, childish, and so in need of therapy ... LOL .... as my mother use to say, "Dumb-ass Irish Mentality" .... deny it and it does not exist, so I guess it will all be my fault, except for those who have witnessed the happenings, even met some of my brothers, just to say after the fact, "your brothers seemed like nice guys, but what a bunch of AH's!" .... This really amuses me as I know it isn't me, it is the perception of those that watch from the outside and see it all very clearly. This is no "Walton" family by any means. Motto should be with the going gets tough, the tough get running .... fast, in the other direction, and never look back.
In any event, I can safely say that my brothers will not be a part of this fight, and I don't want ANY negative energy floating around me while I try to fight this, and I am going to be forward by stating this very well may be my last fight. I am very tired, with many things to get information on. I am going to shoot for stem cells to be a part of the treatment, but no doubt until after they kill off every thing else. We will know more this coming week. All I know, is they better get with the program, my aunt was diagnosed with lymphoma and died 2 weeks to the day after diagnosis. We need more info. I have not been well in respect to constantly being tired this past week, the pain which remains from last weeks ER visit, and nausea which has been pretty constant since the prednisone, which is what I associated it with. Apparently too much going on in my body at the same time.
LMAO .... and then wonder why some are predicting the end of the world. Well ... I was all ready to send my naked ass off into the planetary unknown .... yet .... at 6:45 pm ... I still sit here waiting. My dog has been on top of me for over a week, Hillary seems to think she knows something we don/t. I am going to go with she just really loves being close to me. :D
To those who follow, and believe in the more evidence based world. I, again, thank you for your following me. I will be curious as to how I am to manage my diabetes with what is the potential of Tuesdays visit. Sorry this post was sort of rambling .... I have a lot on my mind.
Peace and Light
et
Thursday, May 19, 2011
Update
Hi Everyone!!
Just wanted to let you know that I had the CT scan done this morning. Not the most pleasant experience, but I survived. I am thinking that the Western definition of STAT, means "when I get around to looking at it." The tech/RN was very nice, comforting, yet could not get a line in after two shots. He called in the "doctor" to do it, That took the next 40 minutes, and him thinking he was funny at this point, I think, stating that it was my lucky day, he hadn't had any coffee yet either, and he wasn't hung over from last night!! I am sorry as I do use humor in trying to cope with some of these unpleasant episodes, but we usually get past the pleasantries first, and get a small grip on the persons involved. This got me to thinking .... was he just being humorous?? I have held up ER staff, OR staff, outpatient nursing and surgical facilities just to get a line going on me. This guy used an ultrasound machine to help guide him and you should see my arm this evening!! and sore, holy mother of God!!! When it was all over, I thought, while driving to my dermatology appointment, which I was now late for, that there was no way in hell that I was returning to this particular facility in the event a biopsy of this area of my body was to be cut open, sucked out, or any other type of dissection. I will ask to go to the hospital, perhaps not much better, but ... I can at least say that my daughter has connections, has networked well, and that most of her colleagues like me and want me to get the best possible care. Needless to say, no word yet. I also have some areas in which were clipped off, frozen to destroy, and several areas on my skin that are now in the 6 month "watch mode" due to irregularities. Nothing new, and I have not been the most compliant in keeping up with my dermatology follow ups.All in all, I made it through the day, a little dazed and confused, and more blank then normal, but ... with the exceptions of the bags under my eyes, perhaps tomorrow will bring a new outlook.
Thanks to all of you who follow my roller coaster life of health care issues. The prayers, the good vibes, the concern, the comments and opinions, they mean the world to me!!!
Peace and Light
et
Just wanted to let you know that I had the CT scan done this morning. Not the most pleasant experience, but I survived. I am thinking that the Western definition of STAT, means "when I get around to looking at it." The tech/RN was very nice, comforting, yet could not get a line in after two shots. He called in the "doctor" to do it, That took the next 40 minutes, and him thinking he was funny at this point, I think, stating that it was my lucky day, he hadn't had any coffee yet either, and he wasn't hung over from last night!! I am sorry as I do use humor in trying to cope with some of these unpleasant episodes, but we usually get past the pleasantries first, and get a small grip on the persons involved. This got me to thinking .... was he just being humorous?? I have held up ER staff, OR staff, outpatient nursing and surgical facilities just to get a line going on me. This guy used an ultrasound machine to help guide him and you should see my arm this evening!! and sore, holy mother of God!!! When it was all over, I thought, while driving to my dermatology appointment, which I was now late for, that there was no way in hell that I was returning to this particular facility in the event a biopsy of this area of my body was to be cut open, sucked out, or any other type of dissection. I will ask to go to the hospital, perhaps not much better, but ... I can at least say that my daughter has connections, has networked well, and that most of her colleagues like me and want me to get the best possible care. Needless to say, no word yet. I also have some areas in which were clipped off, frozen to destroy, and several areas on my skin that are now in the 6 month "watch mode" due to irregularities. Nothing new, and I have not been the most compliant in keeping up with my dermatology follow ups.All in all, I made it through the day, a little dazed and confused, and more blank then normal, but ... with the exceptions of the bags under my eyes, perhaps tomorrow will bring a new outlook.
Thanks to all of you who follow my roller coaster life of health care issues. The prayers, the good vibes, the concern, the comments and opinions, they mean the world to me!!!
Peace and Light
et
Tuesday, May 17, 2011
Yes, I believe in God
Hello Everyone ...
I'm sorry in delay of any recent post.
I have not been feeling well these last 2-3 weeks and been blaming all of these irritating happenings on the effects of prednisone. So allow me to recap ... for the past couple of weeks I have had this unattractive swelling going on all over my body. Along with this swelling came an all over ache, skin itching beyond belief, and a couple of other maladies as some would refer, to which I am just totally down about. All this came to a flying height on Saturday. I had a "to-do" list that was a mile long, working in the yard, spraying weeds, raking dog piles, etc., in a nutshell ... NONE of this occurred!! Instead, I was in pain that even I couldn't handle, every joint I own was inflamed and stiff to the point of non-mobility, I lost my lunch, returned to bed, tried to get up a few hours later to no avail.... I took myself to the ER. Upon arrival I thought, great, I might get in quick, no such luck. I was taken in immediately for triage and then proceeded to spend the next two hours going from one chair to another trying to find comfort only to land in a make-shift couch curled up, yet again, in the fetal position. It was 6:35 pm when I was finally escorted back into a room. By this time, my attempt to fight off tears was fairly obvious as I had been "dripping" into my sweatshirt while curled up.
The doctor came in and assessed what had been going on, prednisone, my stemmies, the pneumonia, etc. ... a line was started but no fluid was given, lots of blood was drawn .... then I was hit with a big ass dose of morphine and Toradol together. I started to feel groggy, and eventually began to feel my body relax. A little while later (time meant nothing to me now) the nurse came in and informed me I had a fever and administered some Tylenol. At this point, Hillary had come down off her shift on the 1st floor to see what was happening and let me know that she got the ok to leave early and be with me. I told her she could return as I was groggy and we were waiting on tests to be done. She eventually came back to be with me after my nurse told Hillary that the doctor had checked "every box on the lab sheet" (sort of giving way that he had no clue). After a chest X-ray, EKG, and an ultrasound of my right leg, (this seeming to be where they began to put focus due to the pain taking precedent on the right side) no blood clots were located. That, apparently seemed to the the number one thing they wanted to rule out due to the swelling, and excruciating pain I was feeling in places like EVERY joint, especially behind my knees, my hips, shoulders, neck, and lower back. My tongue was also swollen as it had been for a little over a week. Co-workers had noticed my words seemed slightly slurred, Hillary noticing that not only my speech being jumbled, but that I was again dropping things .... like I did prior to my stem cell treatment.
All of this I find a little depressing given as to how well I felt for the 3 weeks post-stemmies. Then the pneumonia stay, the allergy induced asthma and all the prednisone. Now .... what I get this morning. I had a 10:30 am with my PCP, a bump up from Thursdays' appointment. After what seemed like a long recap of my ER visit, and last weeks appointment, review of the blood pressures, etc, she examined my key point areas of pain. A mass, which has been an area of complaint for me for the last couple of years, being told by the last PCP (the one mentioned a couple of times in previous posts) which was surgically opened to repair a so-called hernia, is now a massive area of concern. I was told by previous PCP this was a hernia, with little to no examination and sent to a surgeon, who did go in and repair a VERY small hernia in which he stated to me did not require surgical intervention and that he "didn't believe that was the problem." That was it, no suggestions, no follow up. ..... my life goes on. After she poked, probed, prodded, and made some not so encouraging facial expressions, I was asked if she could do labs?? Geezzz ... didn't we get what we needed on Saturday? She drew to check for Valley Fever, something that seems to be prominent out here in the desert. It is a fungus that blows around in the dirt out here and apparently can cause some pretty nasty residuals. You never really get rid of it, you will always be a carrier. It is not contagious, it is just blown around in the dirt. OH FLIPPIN' JOY!!! Along with that, as people who carry Vally Fever, should not be on prednisone .... (this became a red flag for me), but ... that nasty lymph node which presented a couple of years ago and the lame diagnosis by the PCP who had not once done a full exam, is back to haunt me. Along with a few of the other symptoms in which I presented, I am now being ordered to under go a CT and needle biopsy of the lymph nodes.
I'm scared, unsure, and very tired. I believe in God, a higher power, bigger than I, one who has kept the ultimate eye on me for many years, and yet, here we go again. What happened to that golden phrase my mother always told me when I felt things were getting to much .... "God only gives us as much as he knows we can handle." Guess what .... I have been handling one thing after another for what seems like ... a lifetime. When will it stop, a small reprieve, a short time to enjoy life on my own terms??? Perhaps some healthy outings, some casual travel, a little time on the beach again, maybe even fall in love??? Some big dreams perhaps, but some of these "dreams" have kept me going for a long time, dreaming isn't quite doing it anymore without the physical ability to pull it off.
I am awaiting the call as to when this will happen, my guess is it will not be today as they need to get an insurance auth, but possibly tomorrow. Hillary has left town for a couple of days and .... well ... I will need to pull up my big girl panties and go it alone. Some things, I get very anxious about, I think this is going to be one of them, and my "happy place" seems to be further and further in the distance, hard to imagine, what will I do if this comes back more than I am capable of handling at this particular point in my life??? I have many questions ... and more of them seem to be about my own abilities to carry on with dignity, humor and grace ...
Got to go feed my baby-dog ... she is right here at my feet, and has been pretty much on top of me for the last few days ... think she knows something I don't ??
Peace and Light to All!!!
et
I'm sorry in delay of any recent post.
I have not been feeling well these last 2-3 weeks and been blaming all of these irritating happenings on the effects of prednisone. So allow me to recap ... for the past couple of weeks I have had this unattractive swelling going on all over my body. Along with this swelling came an all over ache, skin itching beyond belief, and a couple of other maladies as some would refer, to which I am just totally down about. All this came to a flying height on Saturday. I had a "to-do" list that was a mile long, working in the yard, spraying weeds, raking dog piles, etc., in a nutshell ... NONE of this occurred!! Instead, I was in pain that even I couldn't handle, every joint I own was inflamed and stiff to the point of non-mobility, I lost my lunch, returned to bed, tried to get up a few hours later to no avail.... I took myself to the ER. Upon arrival I thought, great, I might get in quick, no such luck. I was taken in immediately for triage and then proceeded to spend the next two hours going from one chair to another trying to find comfort only to land in a make-shift couch curled up, yet again, in the fetal position. It was 6:35 pm when I was finally escorted back into a room. By this time, my attempt to fight off tears was fairly obvious as I had been "dripping" into my sweatshirt while curled up.
The doctor came in and assessed what had been going on, prednisone, my stemmies, the pneumonia, etc. ... a line was started but no fluid was given, lots of blood was drawn .... then I was hit with a big ass dose of morphine and Toradol together. I started to feel groggy, and eventually began to feel my body relax. A little while later (time meant nothing to me now) the nurse came in and informed me I had a fever and administered some Tylenol. At this point, Hillary had come down off her shift on the 1st floor to see what was happening and let me know that she got the ok to leave early and be with me. I told her she could return as I was groggy and we were waiting on tests to be done. She eventually came back to be with me after my nurse told Hillary that the doctor had checked "every box on the lab sheet" (sort of giving way that he had no clue). After a chest X-ray, EKG, and an ultrasound of my right leg, (this seeming to be where they began to put focus due to the pain taking precedent on the right side) no blood clots were located. That, apparently seemed to the the number one thing they wanted to rule out due to the swelling, and excruciating pain I was feeling in places like EVERY joint, especially behind my knees, my hips, shoulders, neck, and lower back. My tongue was also swollen as it had been for a little over a week. Co-workers had noticed my words seemed slightly slurred, Hillary noticing that not only my speech being jumbled, but that I was again dropping things .... like I did prior to my stem cell treatment.
All of this I find a little depressing given as to how well I felt for the 3 weeks post-stemmies. Then the pneumonia stay, the allergy induced asthma and all the prednisone. Now .... what I get this morning. I had a 10:30 am with my PCP, a bump up from Thursdays' appointment. After what seemed like a long recap of my ER visit, and last weeks appointment, review of the blood pressures, etc, she examined my key point areas of pain. A mass, which has been an area of complaint for me for the last couple of years, being told by the last PCP (the one mentioned a couple of times in previous posts) which was surgically opened to repair a so-called hernia, is now a massive area of concern. I was told by previous PCP this was a hernia, with little to no examination and sent to a surgeon, who did go in and repair a VERY small hernia in which he stated to me did not require surgical intervention and that he "didn't believe that was the problem." That was it, no suggestions, no follow up. ..... my life goes on. After she poked, probed, prodded, and made some not so encouraging facial expressions, I was asked if she could do labs?? Geezzz ... didn't we get what we needed on Saturday? She drew to check for Valley Fever, something that seems to be prominent out here in the desert. It is a fungus that blows around in the dirt out here and apparently can cause some pretty nasty residuals. You never really get rid of it, you will always be a carrier. It is not contagious, it is just blown around in the dirt. OH FLIPPIN' JOY!!! Along with that, as people who carry Vally Fever, should not be on prednisone .... (this became a red flag for me), but ... that nasty lymph node which presented a couple of years ago and the lame diagnosis by the PCP who had not once done a full exam, is back to haunt me. Along with a few of the other symptoms in which I presented, I am now being ordered to under go a CT and needle biopsy of the lymph nodes.
I'm scared, unsure, and very tired. I believe in God, a higher power, bigger than I, one who has kept the ultimate eye on me for many years, and yet, here we go again. What happened to that golden phrase my mother always told me when I felt things were getting to much .... "God only gives us as much as he knows we can handle." Guess what .... I have been handling one thing after another for what seems like ... a lifetime. When will it stop, a small reprieve, a short time to enjoy life on my own terms??? Perhaps some healthy outings, some casual travel, a little time on the beach again, maybe even fall in love??? Some big dreams perhaps, but some of these "dreams" have kept me going for a long time, dreaming isn't quite doing it anymore without the physical ability to pull it off.
I am awaiting the call as to when this will happen, my guess is it will not be today as they need to get an insurance auth, but possibly tomorrow. Hillary has left town for a couple of days and .... well ... I will need to pull up my big girl panties and go it alone. Some things, I get very anxious about, I think this is going to be one of them, and my "happy place" seems to be further and further in the distance, hard to imagine, what will I do if this comes back more than I am capable of handling at this particular point in my life??? I have many questions ... and more of them seem to be about my own abilities to carry on with dignity, humor and grace ...
Got to go feed my baby-dog ... she is right here at my feet, and has been pretty much on top of me for the last few days ... think she knows something I don't ??
Peace and Light to All!!!
et
Saturday, May 14, 2011
A week from hell ...
Happy Saturday Kids!!
Well ... all I can say is it has been a week from hell.
I seem to be undergoing changes which I can only attribute to the prednisone use for 8 out of 13 weeks since my stem cell treatment. As I had stated last week, my endocrinologist told me another 4-6 weeks before my body clears it. Okay, I had shown her the effects of the swelling going on, to which in this past week has exacerbated beyond what I anticipated, and far more than I can handle. Along with all the physical issues going on, like the constant throbbing in my legs, to which at this moment, my right leg is aching and throbbing from the top of my foot up to behind my knee and is beginning to work it's way up the back of my thigh. This is uncomfortable beyond description for me. I have also been incredibly cranky, irritable, down right bitchy!!! and my daughter will tell you as much as I have been saying it, this is NOT me!! (Don't get me wrong, I love to bitch). This is random and extreme, (words of my daughter to help in describing to my PCP on Thursday).
I came home from work on Tuesday, called in sick on Weds., went to see my PCP on Thursday morning, did an afternoon at the office, and only a 1/2 day yesterday. I can't stand myself, I can't imagine how those around me feel about me currently, no doubt wanting to duck tape my mouth shut. Every morning this week, I have come close to getting out of my car and chocking the shit out of someone who seems to be in this incredible hurry to get someplace. I'm sorry, but weaving in and out of traffic because you didn't leave in time for work is not my problem!! Along with that, WHY must you think you can handle driving, as well as talking on the phone, texting, putting on your mascara, and still feel the need to speed and weave??? Perhaps you should leave a few minutes earlier and consider traffic, better yet, JUST BE LATE!!! Not always a woman either, my finger has flown out the window along with a few choice words to these people in the past week in which no real change was made as they continued to weave their way to the next red light only to have to stop. WHY ... I ask is there never a cop around in times like this?? Traffic is heavy enough that people like this certainly stick out. I am so irritable, that I want to just smack the next stupid person I encounter. Slap them into reality, life is NOT all about you!!! I am in it too, and I am trying really hard to live it out a few more days!! So smarten up!! People seem so rude out here at times. Men especially(not all of them, but a good majority), like their mentality is I should be barefoot, pregnant and fetching them their next Budweiser, otherwise I am just taking up space!! Not this one pal!! If you ram my ass with a carriage at the grocery store I expect an "excuse me" or an "I'm sorry." All I ever get out here is no eye contact, and I was in THEIR way. Common courtesy and street smarts are not all that common in this area from what I have experienced and it is wearing pretty thin on me, especially under the influence of this "roid rage." Now, I'm not using this as an excuse, but the spewing of my emotions, or what I am thinking at any given moment has certainly come out of my mouth like "word vomit" in the past couple of weeks. I cry at the drop of a hat, for no reason, and if you were to ask my daughter, I don't cry enough, and lately over stupid stuff ... like watching Toy Story 3 .... REALLY!?!!??
Earlier this week I consulted with a colleague at work, a psychiatrist, in which I trust his judgement and overall knowledge. I feel he is one of the best doctors we have on staff, and personally, don't think he would steer me in the wrong direction. He told me that the effects of prednisone can cause manic symptoms. Hillary spouts back with "she is SO not manic!" His response to that is that there is also something called "irritable mania." I thought he was teasing me ... he WAS NOT!!! I don't believe there is any sort of mania going on here ... LOL ... or my house would be flippin' spotless at this point!! All I know, is that I am cranky beyond belief and my body hurts to the point where it feels like it is going to explode due to the swelling going on, and it is BAD!! I feel like a freakin' Macy's Day parade balloon the last few days but lunchtime. Ok ... so I go to the PCP on Thursday morning, she is telling me she doesn't think it is the steroid..... hello!!! Let's not go looking for anything else that it could be when the evidence, and symptoms clearly point to the steroid use. On researching even deeper, all the things that have happened recently, the heartburn, itching, vomiting and nausea, can all be attributed to the prednisone. My colleague also stated, which parallelled info I got off the Mayo Clinic website, is that I was told 4-6 weeks, but that in some patients it could take months!!!
All my labs came back normal with the exception of my A1c. She did do a urine test the other day, not sure what the results of this was. She places me on HCTZ (A BP/diuretic combo) and Ativan for a week and asks me to check my BP twice a day as that too, has elevated. I NEVER have elevated blood pressure, if anything it is low and I suffer from that whole dizzy thing if I get up too fast, i.e., orthostatic hypotension. She asks me about hormones, and history of depression. I am all to familiar with depression having suffered several bouts since childhood, and know the signs. She states "I don't want you to fall through the cracks." Again, really?? There is a family history of both high blood pressure and depression. My point is this person treated me with large doses of steroids and all these symptoms clearly relate to that treatment. I am not, nor have I ever been a text book patient, why would it start now?? I see her again on Thursday. My colleague states that "it will go away, and I will return to normal", however, I find that a rather vague outlook. I want more details as what I am experiencing is so far beyond pleasant on so many levels, I am having a hard time coping. He wished me luck, and Hillary the BEST of luck. (I'm thinking, and know, that she is taking the brunt of my bad moods and I don't mean it). I am just unpredictable on so many levels I find it safest to withdraw, or just go to bed as anything that I want to get done, is no doubt going to irritate me as I want it done when I ask you to do it, like the yard work I asked to be completed this week so I could go out and mow and spray this weekend. Not done, my irritation beyond boiling point at the moment. It is best for me to walk away, or better yet, just go to bed and put my legs up as they really are beyond painful.
OK ... I have asked a couple of my docs about the affect on my stemmies. All I get for response is "well, with no real data available, we can't tell." Again, too flipping vague for my liking. There is data out there somewhere, again, not in the US, but somewhere they are keeping track. I am at a point, and it could be my state of mind on this crap currently, how long should one continue to fight?? I want to undergo the stem cell treatment once more and see if I get the results I feel I should have had the 1st round had I not gone into it fighting infection to start. I do blame that on the PCP I had prior to 12-10 as she was only interested, in my opinion in making quota and collecting a copay. She should have ordered a chest x-ray long before I had one done, in the ER, 4 months later!!! Again, a mess up on her part that I am paying for. It is these sorts of establishments who call themselves health professionals that really burn my ass!!! If it is all about money, I really do mean nothing, so why would they care about any positive result?? The more a patient comes back, the more cash added to the cow. Let's prescribe useless medications, with high costs and exorbitant side effects ... yeah .... that is how we make a living .... to hell with the patient or better put #12345, because on so many levels, that seems to be what most are to good percentage of todays' providers. I can say I have been lucky to have encountered what I feel to be a large number of forward thinking doctors and nurses, and teachers, who see where I am coming from. However, this is NOT what they are taught to bring forward and to me .... that should be considered a crime!!!
On that note, I am taking my cranky person to the shower (I will try not and drown her) and then ... well ... will see which direction I head.
Have a wonderful weekend everyone!!
Peace and Light (and personally wishing for some tranquility)
et
Well ... all I can say is it has been a week from hell.
I seem to be undergoing changes which I can only attribute to the prednisone use for 8 out of 13 weeks since my stem cell treatment. As I had stated last week, my endocrinologist told me another 4-6 weeks before my body clears it. Okay, I had shown her the effects of the swelling going on, to which in this past week has exacerbated beyond what I anticipated, and far more than I can handle. Along with all the physical issues going on, like the constant throbbing in my legs, to which at this moment, my right leg is aching and throbbing from the top of my foot up to behind my knee and is beginning to work it's way up the back of my thigh. This is uncomfortable beyond description for me. I have also been incredibly cranky, irritable, down right bitchy!!! and my daughter will tell you as much as I have been saying it, this is NOT me!! (Don't get me wrong, I love to bitch). This is random and extreme, (words of my daughter to help in describing to my PCP on Thursday).
I came home from work on Tuesday, called in sick on Weds., went to see my PCP on Thursday morning, did an afternoon at the office, and only a 1/2 day yesterday. I can't stand myself, I can't imagine how those around me feel about me currently, no doubt wanting to duck tape my mouth shut. Every morning this week, I have come close to getting out of my car and chocking the shit out of someone who seems to be in this incredible hurry to get someplace. I'm sorry, but weaving in and out of traffic because you didn't leave in time for work is not my problem!! Along with that, WHY must you think you can handle driving, as well as talking on the phone, texting, putting on your mascara, and still feel the need to speed and weave??? Perhaps you should leave a few minutes earlier and consider traffic, better yet, JUST BE LATE!!! Not always a woman either, my finger has flown out the window along with a few choice words to these people in the past week in which no real change was made as they continued to weave their way to the next red light only to have to stop. WHY ... I ask is there never a cop around in times like this?? Traffic is heavy enough that people like this certainly stick out. I am so irritable, that I want to just smack the next stupid person I encounter. Slap them into reality, life is NOT all about you!!! I am in it too, and I am trying really hard to live it out a few more days!! So smarten up!! People seem so rude out here at times. Men especially(not all of them, but a good majority), like their mentality is I should be barefoot, pregnant and fetching them their next Budweiser, otherwise I am just taking up space!! Not this one pal!! If you ram my ass with a carriage at the grocery store I expect an "excuse me" or an "I'm sorry." All I ever get out here is no eye contact, and I was in THEIR way. Common courtesy and street smarts are not all that common in this area from what I have experienced and it is wearing pretty thin on me, especially under the influence of this "roid rage." Now, I'm not using this as an excuse, but the spewing of my emotions, or what I am thinking at any given moment has certainly come out of my mouth like "word vomit" in the past couple of weeks. I cry at the drop of a hat, for no reason, and if you were to ask my daughter, I don't cry enough, and lately over stupid stuff ... like watching Toy Story 3 .... REALLY!?!!??
Earlier this week I consulted with a colleague at work, a psychiatrist, in which I trust his judgement and overall knowledge. I feel he is one of the best doctors we have on staff, and personally, don't think he would steer me in the wrong direction. He told me that the effects of prednisone can cause manic symptoms. Hillary spouts back with "she is SO not manic!" His response to that is that there is also something called "irritable mania." I thought he was teasing me ... he WAS NOT!!! I don't believe there is any sort of mania going on here ... LOL ... or my house would be flippin' spotless at this point!! All I know, is that I am cranky beyond belief and my body hurts to the point where it feels like it is going to explode due to the swelling going on, and it is BAD!! I feel like a freakin' Macy's Day parade balloon the last few days but lunchtime. Ok ... so I go to the PCP on Thursday morning, she is telling me she doesn't think it is the steroid..... hello!!! Let's not go looking for anything else that it could be when the evidence, and symptoms clearly point to the steroid use. On researching even deeper, all the things that have happened recently, the heartburn, itching, vomiting and nausea, can all be attributed to the prednisone. My colleague also stated, which parallelled info I got off the Mayo Clinic website, is that I was told 4-6 weeks, but that in some patients it could take months!!!
All my labs came back normal with the exception of my A1c. She did do a urine test the other day, not sure what the results of this was. She places me on HCTZ (A BP/diuretic combo) and Ativan for a week and asks me to check my BP twice a day as that too, has elevated. I NEVER have elevated blood pressure, if anything it is low and I suffer from that whole dizzy thing if I get up too fast, i.e., orthostatic hypotension. She asks me about hormones, and history of depression. I am all to familiar with depression having suffered several bouts since childhood, and know the signs. She states "I don't want you to fall through the cracks." Again, really?? There is a family history of both high blood pressure and depression. My point is this person treated me with large doses of steroids and all these symptoms clearly relate to that treatment. I am not, nor have I ever been a text book patient, why would it start now?? I see her again on Thursday. My colleague states that "it will go away, and I will return to normal", however, I find that a rather vague outlook. I want more details as what I am experiencing is so far beyond pleasant on so many levels, I am having a hard time coping. He wished me luck, and Hillary the BEST of luck. (I'm thinking, and know, that she is taking the brunt of my bad moods and I don't mean it). I am just unpredictable on so many levels I find it safest to withdraw, or just go to bed as anything that I want to get done, is no doubt going to irritate me as I want it done when I ask you to do it, like the yard work I asked to be completed this week so I could go out and mow and spray this weekend. Not done, my irritation beyond boiling point at the moment. It is best for me to walk away, or better yet, just go to bed and put my legs up as they really are beyond painful.
OK ... I have asked a couple of my docs about the affect on my stemmies. All I get for response is "well, with no real data available, we can't tell." Again, too flipping vague for my liking. There is data out there somewhere, again, not in the US, but somewhere they are keeping track. I am at a point, and it could be my state of mind on this crap currently, how long should one continue to fight?? I want to undergo the stem cell treatment once more and see if I get the results I feel I should have had the 1st round had I not gone into it fighting infection to start. I do blame that on the PCP I had prior to 12-10 as she was only interested, in my opinion in making quota and collecting a copay. She should have ordered a chest x-ray long before I had one done, in the ER, 4 months later!!! Again, a mess up on her part that I am paying for. It is these sorts of establishments who call themselves health professionals that really burn my ass!!! If it is all about money, I really do mean nothing, so why would they care about any positive result?? The more a patient comes back, the more cash added to the cow. Let's prescribe useless medications, with high costs and exorbitant side effects ... yeah .... that is how we make a living .... to hell with the patient or better put #12345, because on so many levels, that seems to be what most are to good percentage of todays' providers. I can say I have been lucky to have encountered what I feel to be a large number of forward thinking doctors and nurses, and teachers, who see where I am coming from. However, this is NOT what they are taught to bring forward and to me .... that should be considered a crime!!!
On that note, I am taking my cranky person to the shower (I will try not and drown her) and then ... well ... will see which direction I head.
Have a wonderful weekend everyone!!
Peace and Light (and personally wishing for some tranquility)
et
Monday, May 9, 2011
Something to look at ...
http://www.diabetespower.org.uk/
Check this site out!! This young lady is amazing in her determination to promote awareness.
I can attest, I didn't have this sort of outlook when I was a kid. I was all about the "why bother," life looked pretty grim for me, and there didn't seem to be a cure or better treatments in sight. Science has come a LONG way since the 70's, now lets get this moving so we CAN see a cure in our life time. If for no other reason, how about so the children of today, have a much more positive outlook on tomorrow!!
These people gather and share experiences on the FaceBook page "Pancreatic Islet Cell Transplant Recipients." This is an open page to gain knowledge, share experiences, etc.
I hope everyone has a great day ... I am still feeling incredibly achy and stiff with my head feeling much too heavy to carry around on my shoulders. Not sure how much of the day I am going to get in, but I will give it my best shot.
Peace and Light to all!!
Check this site out!! This young lady is amazing in her determination to promote awareness.
I can attest, I didn't have this sort of outlook when I was a kid. I was all about the "why bother," life looked pretty grim for me, and there didn't seem to be a cure or better treatments in sight. Science has come a LONG way since the 70's, now lets get this moving so we CAN see a cure in our life time. If for no other reason, how about so the children of today, have a much more positive outlook on tomorrow!!
These people gather and share experiences on the FaceBook page "Pancreatic Islet Cell Transplant Recipients." This is an open page to gain knowledge, share experiences, etc.
I hope everyone has a great day ... I am still feeling incredibly achy and stiff with my head feeling much too heavy to carry around on my shoulders. Not sure how much of the day I am going to get in, but I will give it my best shot.
Peace and Light to all!!
Sunday, May 8, 2011
Guess who caught the latest "crud"?
Good Evening, I hope all the Mom's had a wonderful day, as I am sure each and everyone of you deserve it. Personally, I think we should at least get a long weekend.
I wasn't as productive as I had hoped to be this weekend. Yesterday was a bust with the traveling around to get errands done. Today, well ... I haven't felt so great since Friday afternoon. It would seem that a new line of "crud" is going around and I think I am in the early stages. Belly is sort of angry. I am still dealing with the prednisone issues. My blood sugars have been a little on the high side today too (we all know this could indicate illness, infection, etc). I am really starting to wonder how much all of this is affecting my stemmies. In spite of the improved gut, the swelling and an obviously lowered immune system seem to be winning. I am so bloated, and swollen (you can see how much by the tightness in my skin) which is totally gross in my humble opinion. I am still from head to toe. I am about to head off to bed soon, as soon as my blanket is done in the dryer. :)
We are are having some work done on the house this week and are slowly weeding through stuff that isn't all ours since we moved in 2 years ago. However, I don't see us getting near what we want to done due to $$ and well, no man around I can call my own...LOL... or to hand the Honey Do List off too. I am SO much better in the stamina department since treatment, but still, get run down seemingly fast. Now this ... ?? Really, it seems never ending sometimes. I am going to be posting a link here in the next day or two to a site out of the UK by a young woman (and her mom too, I believe) who is absolutely amazing in her knowledge and drive to promote awareness of Type 1. She has been posting on the Islet Transplant site on Facebook. Wonderful site with lots of people undergoing, underwent, or looking to take part in the Islet Cell Transplant Trials. These folks are amazing and I wish them such success. They have been doing very well and it is exciting to watch the progress, and the human spirit in motion, as well as the fears and anxieties that come along with this sort of undertaking having lived with this disease for as long as some have. This was the trial in which I was rejected from based on my elevated PRA. :( I often wonder what I would be like now if I had been able to participate??? Just a "what if" question.
Ok kids ... this old lady .... heheh ... is about to hit the pillows hard. Not sure how work will go tomorrow, I feel that uncomfortable right now so will have to play it by ear, or gut and body.
I wish everyone a restful evening, and a wonderful week ahead!!
Peace and Light
et
I wasn't as productive as I had hoped to be this weekend. Yesterday was a bust with the traveling around to get errands done. Today, well ... I haven't felt so great since Friday afternoon. It would seem that a new line of "crud" is going around and I think I am in the early stages. Belly is sort of angry. I am still dealing with the prednisone issues. My blood sugars have been a little on the high side today too (we all know this could indicate illness, infection, etc). I am really starting to wonder how much all of this is affecting my stemmies. In spite of the improved gut, the swelling and an obviously lowered immune system seem to be winning. I am so bloated, and swollen (you can see how much by the tightness in my skin) which is totally gross in my humble opinion. I am still from head to toe. I am about to head off to bed soon, as soon as my blanket is done in the dryer. :)
We are are having some work done on the house this week and are slowly weeding through stuff that isn't all ours since we moved in 2 years ago. However, I don't see us getting near what we want to done due to $$ and well, no man around I can call my own...LOL... or to hand the Honey Do List off too. I am SO much better in the stamina department since treatment, but still, get run down seemingly fast. Now this ... ?? Really, it seems never ending sometimes. I am going to be posting a link here in the next day or two to a site out of the UK by a young woman (and her mom too, I believe) who is absolutely amazing in her knowledge and drive to promote awareness of Type 1. She has been posting on the Islet Transplant site on Facebook. Wonderful site with lots of people undergoing, underwent, or looking to take part in the Islet Cell Transplant Trials. These folks are amazing and I wish them such success. They have been doing very well and it is exciting to watch the progress, and the human spirit in motion, as well as the fears and anxieties that come along with this sort of undertaking having lived with this disease for as long as some have. This was the trial in which I was rejected from based on my elevated PRA. :( I often wonder what I would be like now if I had been able to participate??? Just a "what if" question.
Ok kids ... this old lady .... heheh ... is about to hit the pillows hard. Not sure how work will go tomorrow, I feel that uncomfortable right now so will have to play it by ear, or gut and body.
I wish everyone a restful evening, and a wonderful week ahead!!
Peace and Light
et
Happy Mother's Day
I wish all my followers, the fill-in Mom, the friends and family who are mothers a VERY HAPPY MOTHER's DAY!!! I wish for all to feel the love and admiration placed upon us as mothers, even when we are not the most popular on any one particular subject.
Enjoy YOUR day!!!
Below is an article I was just reading, thought some of you may find it interesting. Copy and Paste the address into your browser.
http://www.usatoday.com/news/health/2010-08-02-stem-cells_N.htm
I would love to find a way to get myself into a job position in which I could help the researchers, the makers of the technology to bring the cells to life, i.e., Adistem, etc, I have the background, I now have the personal experience, how about the data needed to make this a reality in the states?? I am dumbfounded by the info that can be found with the institutes abroad that are collecting data, and going places. I WANT to be a part of this. Anyone have info on this area?? I would love to get more info, or direction as to how I could obtain this information. If the US isn't going to take this further, I will find a way to get to where scientists, doctors, and society, etc are willing to get it to the people who need it.
Again, I am always open to comments, educational information, other outlooks, etc. We are never too old to learn, and as a society, we must open our minds to what the potential long term effects will show.
In good health!!
Peace and Light
et
Enjoy YOUR day!!!
Below is an article I was just reading, thought some of you may find it interesting. Copy and Paste the address into your browser.
http://www.usatoday.com/news/health/2010-08-02-stem-cells_N.htm
I would love to find a way to get myself into a job position in which I could help the researchers, the makers of the technology to bring the cells to life, i.e., Adistem, etc, I have the background, I now have the personal experience, how about the data needed to make this a reality in the states?? I am dumbfounded by the info that can be found with the institutes abroad that are collecting data, and going places. I WANT to be a part of this. Anyone have info on this area?? I would love to get more info, or direction as to how I could obtain this information. If the US isn't going to take this further, I will find a way to get to where scientists, doctors, and society, etc are willing to get it to the people who need it.
Again, I am always open to comments, educational information, other outlooks, etc. We are never too old to learn, and as a society, we must open our minds to what the potential long term effects will show.
In good health!!
Peace and Light
et
Friday, May 6, 2011
Emotional Overload
Good Friday Evening to Everyone!!
Ok .. well, I guess I haven't checked in all week. So shall we recap the week? As I sit here not knowing if I am hot or cold, feet and lower legs continue to swell, overly emotional, not knowing if it is because it is Mother's Day weekend, or residual prednisone "rage.
Now, I was hoping that all this prednisone crap would have been out of my system by now, NOT!! Might as well start the weeks recap with my trip to Phoenix on Monday to see my endocrinologist.
She was thrilled to see my numbers in spite of the labs revealing an A1c of 8.1!! I was not thirlled with this, but I knew it was all related to the prednisone. She too, tole me that it would be another 4-6 weeks before my body was clear of the steroids. Four to six weeks of this ... the bloating, the achey joints, the emotional spurts. I am thinking that some of the emotions are coming to surface just because it is mother's day. My mother has been gone from this plane for almost 3 years now (10/08)and not a day goes by that she is not in my thoughts, or something that happens doesn't throw a reminder at me as to what she missed out on seeing. My undergoing the stem cell treatment, which I just know she was with me on the day in February, the upcoming graduation of Hillary with her RN, and no doubt a hundred other things that will happen in the future that she would have loved to have been a part of. I am not sure, perhaps it is in part a combination of the prednisone and the emotions that keep creeping in on so many levels. I am a big girl now and should be able to cope with the loss of my mother at my age, I understand it all on the levels involved, sometime, I just ... get lost in the "what ifs." Life for me never seems to be predictable. I sort of like that predictable, so I don't get tossed into the realm of chaos, which is where most of my life seems to go.
Back to the appointment, I was not happy about the next month and anticipated uncomforable aches to come. Dr. Phillips was very happy that my numbers reflected much fewer lows, and when I did have a low (4) they were caught well before the critcal level and came back faster and not with the overboard high rebounds. That too, was a positive. I told her about how I was no longer on my Cymbalta for the pain of neuropathy and fibromyalgia, that my gut was doing amazingly well and a benefit I did not expect. We discussed what being on the steroids for 8 weeks out of the last 12 since treatment may have played on the effect of the stem cells?? With no real data currently to evaluate the effects of any such treatments, it will have to be a wait and see. I am hoping to undergo a second treatment with in the next 7 - 12 months and am working with those involved to see that it happens as hoped. All my other labs came back within a normal range. That always makes doc happy. My thyroid, my cholesterol, and kidney function tests were all within or below the levels for a long term diabetic. She also told me that as long as I was staying hydrated and that I was getting rid of it on a higher than normal range (whizing) that it would and/or should be ok. I worry about taking steroids for anything due to the fact they wreak havok on the body. This is something that always bothers me with phramaceuticals. Think about some of the ads we see on television these days ... the side effect list is often times so long, with effects that are far worse than the problem to be treated why would we want to take some of this stuff?? I have learned how to use a lot of natural products to treat many things that have come up over the years. Now these can have side effects as well depending on the problem, and the natural treatment, however, in my opinion, it is well worth trying this sort of fix first than dish out an astronomical amount of money to figure out that you can't take something, or that it didn't work for you, or worse, you suffer some of these horrible, ill effects that will no doubt trigger another issue.
The encounter was very positive. She stated that considering how sick I was, stating "you were VERY sick, you needed to be on this stuff" I looked great!! I still feel pretty good given how sick I was, but I looked really good that first 3-4 weeks after treatment. I feel that the effect of that has diminished somewhat, and that could just be how I feel both physically and emotionally currently.
Work has been incredibly stressful for me lately. I don't know what to do as I feel this place is being run by the monkeys. Too much lack of communication, too much of the upper echelon trying to micro manage to the point of outright stupidity. People who don't and won't share the information needed for so many other people to get thier jobs done in not only a timely manner, but within compliance as well. I can't help but feel it is a sinking ship with all this budget BS going on in the state of AZ and multiple staff members leaving or have already left. Some of us, and in my department alone, I can count the people who have busting thier asses to cover others who work so hard at doing nothing, yet still have a job. I have found out personally that the whole "open door" policy they have is complete and total BS!!! I don't trust the HR person as far as I could throw them and that isn't very far. Another supervisor, caught in outright lies, I have asked what I would have to do to get fired ... damn ... apparently it is an open game!! I am just not sure how good this is for me, I want to work, I have worked hard to go back to work after 10 years of being considered disabled, and just wait around to die. Again, BS ... I would like to continue my education, perhaps in an area that would push me into this science I have become so passionate about. But ... How?? What can I do, where can I apply what I know, to put my best professional foot forward to get it here to help others?? Part of me really would consider moving to another country if I thought for one minute I could make a difference.
Basically, the rest of the week was pretty uneventful. We had 3 trees, and 10 shrubs planted this week to try and privatize our little corner lot. I like my privacy, I would like more seclusion as far as property, but ... this is the dream dump I will most likely die in. Hillary is my co-owner and she isn't looking to stay here as she is growing old of the mentality in this state as well. I don't really care where I call home. Home is were I lay my head at night, where I can come home and feel safe. I have made some wonderful friends, but, I also left some wonderful, long-term friends when I left the east coast. My daughter keeps telling me that to find a "date, you have to leave the house." Well, she may be right, but I work hard all week, I want to be able to come home and be comfortable in my surroundings, work on my own personal space, and then share it with my friends. I live a very simple life, I don't need any more out of this world excitement. Companionship is something I have missed for many years. In part, I think, is that others can find me intimidating, so I have been told. I have been accused in past relationships of ... well ... being too independant, not needy enough, or my all time favorite, you're an enigma .... LMAO .... it's not you, it's me. Whatever, I have come to a point in my life where this sort of encounter means a waste of my time. I am the person I am, I can't help it. Part of who I am today is based on the situations I have overcome, and ... as I type for the entire world to read, have some trust issues ... although I have tried hard to overcome these lurking intrusions, there are still some people who will take advantage of any situation if they think it will benefit them. I try not to go there first, but you know that there is a saying for that too ... fool me once, shame on me, fool me twice ... or something like that.
Ok ... well ... it is WAY past my bedtime tonight and I am totally exhausted so will be headed for LaLa Land with my fur ball, poor thing has terrible allergies going on. She is literally laying on the couch beside me with her head hanging off and snoring like no man I have ever known. I feel so bad for her as she can't complain to me, and I am not sure, but I think I can relate to her discomfort.
On that note ... I wish everyone a very restful evening, and a very happy Mother's Day weekend!!
Peace and Light
et
Ok .. well, I guess I haven't checked in all week. So shall we recap the week? As I sit here not knowing if I am hot or cold, feet and lower legs continue to swell, overly emotional, not knowing if it is because it is Mother's Day weekend, or residual prednisone "rage.
Now, I was hoping that all this prednisone crap would have been out of my system by now, NOT!! Might as well start the weeks recap with my trip to Phoenix on Monday to see my endocrinologist.
She was thrilled to see my numbers in spite of the labs revealing an A1c of 8.1!! I was not thirlled with this, but I knew it was all related to the prednisone. She too, tole me that it would be another 4-6 weeks before my body was clear of the steroids. Four to six weeks of this ... the bloating, the achey joints, the emotional spurts. I am thinking that some of the emotions are coming to surface just because it is mother's day. My mother has been gone from this plane for almost 3 years now (10/08)and not a day goes by that she is not in my thoughts, or something that happens doesn't throw a reminder at me as to what she missed out on seeing. My undergoing the stem cell treatment, which I just know she was with me on the day in February, the upcoming graduation of Hillary with her RN, and no doubt a hundred other things that will happen in the future that she would have loved to have been a part of. I am not sure, perhaps it is in part a combination of the prednisone and the emotions that keep creeping in on so many levels. I am a big girl now and should be able to cope with the loss of my mother at my age, I understand it all on the levels involved, sometime, I just ... get lost in the "what ifs." Life for me never seems to be predictable. I sort of like that predictable, so I don't get tossed into the realm of chaos, which is where most of my life seems to go.
Back to the appointment, I was not happy about the next month and anticipated uncomforable aches to come. Dr. Phillips was very happy that my numbers reflected much fewer lows, and when I did have a low (4) they were caught well before the critcal level and came back faster and not with the overboard high rebounds. That too, was a positive. I told her about how I was no longer on my Cymbalta for the pain of neuropathy and fibromyalgia, that my gut was doing amazingly well and a benefit I did not expect. We discussed what being on the steroids for 8 weeks out of the last 12 since treatment may have played on the effect of the stem cells?? With no real data currently to evaluate the effects of any such treatments, it will have to be a wait and see. I am hoping to undergo a second treatment with in the next 7 - 12 months and am working with those involved to see that it happens as hoped. All my other labs came back within a normal range. That always makes doc happy. My thyroid, my cholesterol, and kidney function tests were all within or below the levels for a long term diabetic. She also told me that as long as I was staying hydrated and that I was getting rid of it on a higher than normal range (whizing) that it would and/or should be ok. I worry about taking steroids for anything due to the fact they wreak havok on the body. This is something that always bothers me with phramaceuticals. Think about some of the ads we see on television these days ... the side effect list is often times so long, with effects that are far worse than the problem to be treated why would we want to take some of this stuff?? I have learned how to use a lot of natural products to treat many things that have come up over the years. Now these can have side effects as well depending on the problem, and the natural treatment, however, in my opinion, it is well worth trying this sort of fix first than dish out an astronomical amount of money to figure out that you can't take something, or that it didn't work for you, or worse, you suffer some of these horrible, ill effects that will no doubt trigger another issue.
The encounter was very positive. She stated that considering how sick I was, stating "you were VERY sick, you needed to be on this stuff" I looked great!! I still feel pretty good given how sick I was, but I looked really good that first 3-4 weeks after treatment. I feel that the effect of that has diminished somewhat, and that could just be how I feel both physically and emotionally currently.
Work has been incredibly stressful for me lately. I don't know what to do as I feel this place is being run by the monkeys. Too much lack of communication, too much of the upper echelon trying to micro manage to the point of outright stupidity. People who don't and won't share the information needed for so many other people to get thier jobs done in not only a timely manner, but within compliance as well. I can't help but feel it is a sinking ship with all this budget BS going on in the state of AZ and multiple staff members leaving or have already left. Some of us, and in my department alone, I can count the people who have busting thier asses to cover others who work so hard at doing nothing, yet still have a job. I have found out personally that the whole "open door" policy they have is complete and total BS!!! I don't trust the HR person as far as I could throw them and that isn't very far. Another supervisor, caught in outright lies, I have asked what I would have to do to get fired ... damn ... apparently it is an open game!! I am just not sure how good this is for me, I want to work, I have worked hard to go back to work after 10 years of being considered disabled, and just wait around to die. Again, BS ... I would like to continue my education, perhaps in an area that would push me into this science I have become so passionate about. But ... How?? What can I do, where can I apply what I know, to put my best professional foot forward to get it here to help others?? Part of me really would consider moving to another country if I thought for one minute I could make a difference.
Basically, the rest of the week was pretty uneventful. We had 3 trees, and 10 shrubs planted this week to try and privatize our little corner lot. I like my privacy, I would like more seclusion as far as property, but ... this is the dream dump I will most likely die in. Hillary is my co-owner and she isn't looking to stay here as she is growing old of the mentality in this state as well. I don't really care where I call home. Home is were I lay my head at night, where I can come home and feel safe. I have made some wonderful friends, but, I also left some wonderful, long-term friends when I left the east coast. My daughter keeps telling me that to find a "date, you have to leave the house." Well, she may be right, but I work hard all week, I want to be able to come home and be comfortable in my surroundings, work on my own personal space, and then share it with my friends. I live a very simple life, I don't need any more out of this world excitement. Companionship is something I have missed for many years. In part, I think, is that others can find me intimidating, so I have been told. I have been accused in past relationships of ... well ... being too independant, not needy enough, or my all time favorite, you're an enigma .... LMAO .... it's not you, it's me. Whatever, I have come to a point in my life where this sort of encounter means a waste of my time. I am the person I am, I can't help it. Part of who I am today is based on the situations I have overcome, and ... as I type for the entire world to read, have some trust issues ... although I have tried hard to overcome these lurking intrusions, there are still some people who will take advantage of any situation if they think it will benefit them. I try not to go there first, but you know that there is a saying for that too ... fool me once, shame on me, fool me twice ... or something like that.
Ok ... well ... it is WAY past my bedtime tonight and I am totally exhausted so will be headed for LaLa Land with my fur ball, poor thing has terrible allergies going on. She is literally laying on the couch beside me with her head hanging off and snoring like no man I have ever known. I feel so bad for her as she can't complain to me, and I am not sure, but I think I can relate to her discomfort.
On that note ... I wish everyone a very restful evening, and a very happy Mother's Day weekend!!
Peace and Light
et
Sunday, May 1, 2011
New Spring look
Spring is upon us and it has been heating up here in the desert southwest.
I will be heading out to do some more cleaning up in the yard to prepare for my new trees and shrubs coming to be planted on Tuesday morning ... I can't wait to see this new outlook on our bare corner lot. We should have done this when we had the house placed ... again, live and learn.
Changed the page outlook to reflect my outlook for the spring ... and blue is one of my favorite colors!! All the shades of blue ... reminds me of the ocean I seem to be so far away from the past 11 years. I will be commemorating 11 years here in AZ in July ... doesn't seem possible given all the things that have happened and transpired over the years. I was asked this past week on a phone call from an old friend from back east, would I ever return? Absolutely not!! I have no desire to return to that sort of weather, my body would not tolerate it, especially the long, cold, damp winters. I would not live long returning to the East, which was in part why I was written the letter by my doctor back there to get me to a place like here. I am, however, contemplating going somewhere else within the next couple of years as Hillary has plans to head off in pursuit of her "trauma" training in the nursing field and expanding her education and career. So ... I wonder where I will land. A large part of me would like to relocate to Europe somewhere, but I have no clue as to how to accomplish that legally and be able to work, other than marrying ... LMAO ... and that is SO NOT in the cards as life sits currently.
Ok ... with that tidbit out there, I am taking my very sore body out into the yard for a while as HT is sleeping and I need to call it an early night with the 4 hours drive time I need to put in tomorrow along with working the morning. Will try and update on the happenings of my appointment soon.
I wish everyone a wonderful day!!
Peace and Light
et
I will be heading out to do some more cleaning up in the yard to prepare for my new trees and shrubs coming to be planted on Tuesday morning ... I can't wait to see this new outlook on our bare corner lot. We should have done this when we had the house placed ... again, live and learn.
Changed the page outlook to reflect my outlook for the spring ... and blue is one of my favorite colors!! All the shades of blue ... reminds me of the ocean I seem to be so far away from the past 11 years. I will be commemorating 11 years here in AZ in July ... doesn't seem possible given all the things that have happened and transpired over the years. I was asked this past week on a phone call from an old friend from back east, would I ever return? Absolutely not!! I have no desire to return to that sort of weather, my body would not tolerate it, especially the long, cold, damp winters. I would not live long returning to the East, which was in part why I was written the letter by my doctor back there to get me to a place like here. I am, however, contemplating going somewhere else within the next couple of years as Hillary has plans to head off in pursuit of her "trauma" training in the nursing field and expanding her education and career. So ... I wonder where I will land. A large part of me would like to relocate to Europe somewhere, but I have no clue as to how to accomplish that legally and be able to work, other than marrying ... LMAO ... and that is SO NOT in the cards as life sits currently.
Ok ... with that tidbit out there, I am taking my very sore body out into the yard for a while as HT is sleeping and I need to call it an early night with the 4 hours drive time I need to put in tomorrow along with working the morning. Will try and update on the happenings of my appointment soon.
I wish everyone a wonderful day!!
Peace and Light
et
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