Hi !!
Well ... going back to the past ... today would have been my 25th wedding anniversary!!
No real loss here. I have been single for 17 years now, technically was a member of the "institution" for 10 years. That is so another blog ... LOL.
I thought for today, seeing as the work week is only in day 2 that I would just leave a fact or two to ponder.
Type I diabetics make up a very small percentile of the diabetic population at only 5-6 %. It seems to me that a good majority of the research and attention goes to those who suffer from Type II. This fact sort of irks me in a way, in that, Type II can be a genetically predisposed disease, BUT .... it is also a lifestyle disease in which epidemic numbers (even children) are developing the disease due to poor choices like lack of exercise, poor diet, etc. In Type II diabetics, although they may at one point have to be on insulin, it is essentially the body's inability to utilize the insulin produced in the body. In Type I (that is me) the body has attacked my own immune system, killing the beta cells, and the pancreas no longer produces the insulin needed to break the carbohydrates consumed into energy used by the body. Mode of survival .... insulin injections. I am incredibly lucky to have been on a pump for the past 12 years or I would most likely already be dead. (Doctors on the east coast in 1997 had told me to "put your affairs in order.") Yeah .... right!!! They forgot who they were dealing with. My research began another phase, and here I am still today.
I have lived with this disease for 37 years now. I have seen many advances. I have had my share of related complications; my first eye hemorrhage at age 17 with both eyes having been through laser surgery for retinopathy; digestive issues; heart issues. I am now beginning to have neuropathic nerve damage showing in my feet. (Maybe I should have laid off the 3 inch pumps long before I did) LOL. Living with Type I, I have learned (fairly early on) that my humor would play key in keeping me on track. You cannot freak out every time a BS goes above range, etc. It is life as a clown in a matter of speaking. It is always managing something, life and how life is going to effect you long-term. A sort of juggling act. At this point in time, I am having a semi-difficult time keeping all my balls in the air at one time .... LOL ... I love euphemisms!!!
Anyway ... that is all the time I have for today. I hope to have more info in the coming weeks as the paperwork and records are almost complete and in the hands of the transplant team at the University of California - San Francisco, I have to gather some records myself and get them ready for mailing off as well. I am really getting excited about this in a weird sort of way. I realize it may not work, but I do have an incredible amount of hope in the process.
Enjoy your evening !!
et
Tuesday, September 29, 2009
Sunday, September 27, 2009
Day 2 - testing
Morning !
Okay, not sure I can do this Day 1, Day 2 .... so titles may vary.
It is 6L41 Sunday morning, I am usually up by 4;30 - 5:00 AM. My Maggie likes to watch the sun come up and the stars disappear. I leave for work M-F by 6:15-30. Week days can be long, and like for so many weekends, so not long enough.
On July 5, 2009, my first birthday without my mother, (she passed away 10/27/08) I was doing some of my usual medical reading and research. Something I have done, like reading the obituaries, since I was in high school. I happen to come upon the clinical trials page of the JDRF (Juvenile Diabetes Research Foundation). On reading through some of the information, I came upon the Islet Transplant Trial. This trial is in its second phase on humans and has had remarkable success thus far. After spending the afternoon reading, and contemplating, I sent off an email requesting more information and started yet another round of investigation into this finding.
20+ years ago, while pregnant with my daughter, the Edmonton Protocol was underway and I was asked to take part in the pump trial. I opted not to having seen the size of the thing at the time and I was already lugging around an extra 40 pounds of baby! I worked very hard to keep things under control while pregnant, having discovered that my unstable blood sugars had most likely been a large cause of the miscarriages I had suffered prior to the successful child. It was a long, hairy (no pun intended) 9 months. I was on multiple insulin injections, 6-8 times a day, and just as many, if not more finger pricks. There are many things, (glucose monitors, insulin pumps, insulin pens) that were not available or even in production, when I was first diagnosed in 1972.
The technology of managing this disease has come almost full circle since being diagnosed. I remember the glass test tubes, the dipsticks, it was horrible. As a kid of 9, having had experienced what I did and almost afraid to tell anyone (I saw rubber room in my future at that point), I believe my life changed forever in more ways than one. I don't remember much of my life prior to being diagnosed, your basic dysfunctional family I guess. Two things come to mind, a friend, moved away, I got a "virus." and missed the first month of school, and walking through a Kmart, gulping back a 2 liter bottle of Coke and having it go right through (literally) me by the time we hit the back of the store. Not much was clear after that, one last remembrance was me collapsing on the steps to the hospital. I spent a long time, almost 6 weeks in the hospital. At that time, I am not sure they had any real grip on the process of management.
I was taken to the Children's Hospital in Boston, who believed in a little less stringent management protocol. "Let the kid be a kid" .... to a point. With the Joslin Clinic right across the street, they were much more structured, weighing and measuring of food, etc. I do remember my mother saying something to the effect of "I have 6 kids!" I did pick up on the whole process, but putting that process into play, was a long, difficult road for me and a no doubt living hell for my mother. I had a huge chip on my shoulder, I did not make life easy by any means. I pushed the envelope every chance I got. I did not like being told I couldn't do something, I still don't. I was told "you shouldn't get pregnant, you can't wear a pump." Watch me!! I am an only girl, if the boys can do it, why can't I? (always seemed to be my thought process). In theory, I can most likely do it better!!! LOL ;P
Again, (get used to it, I do it a lot) I am sort of rambling off track here. There is a lot of ground to cover.
I have learned a lot about myself, my body, and this disease over the years. Especially seeing as I made it past 21!!! LOL .... guess that is a perfect example of "don't tell me what to do" ...LOL.
In the coming months, lots of the past methods of doing things, blended with the science of today will hopefully help to clarify the big picture of where we stand today in regard to being close to a cure. I know that with any transplant, patients are required to take immunosuppresant drugs, to ward off rejection, which is sort of a major trade off if you think about it. To those of us that have opted to plow ahead, most of us have thought long and hard about the risks, benefits, and alternatives that lie ahead, and what we are willing to do to continue on this earth. .
I would love to make this sort of a Q&A forum until we get to the point of actual happenings.
I am 90% complete with all my paperwork and medical records being sent to the UCSF for review. I have met the criteria for transplant. Two endocrinologists, have told me, do it now while you have the opportunity, as "these lows are going to kill you if they continue." No sugar coating there hey??!! I could be looking at going to San Francisco to meet the team and review the paperwork, and protocol by the end of the year. That is 5 months from the time of inquiry, to this point. I was told that for many patients, it takes a year or better to get all their paperwork in, never mind getting to begin the testing process. It is a very frightening experience, but also, for me, a totally exciting experience to look forward to.
Let's get it said right from the get-go, I am not afraid to die, I am afraid of the mess I am going to leave behind. This lack of fear on my part with whatever may happen to us when we leave here, is brought to me by the 3 (that I can recall) near death experiences I have encountered over the years, the first being at age 9. It has a way of holding a place in the back of your mind as to how we might live of lives. Perserverance in the face of adversity ... lol ... I love that line!!
Okay ... dog has to go out ... I will review and try to check in on a daily or every other day basis until we get things really rolling.
Thanks for coming along!!
B
Okay, not sure I can do this Day 1, Day 2 .... so titles may vary.
It is 6L41 Sunday morning, I am usually up by 4;30 - 5:00 AM. My Maggie likes to watch the sun come up and the stars disappear. I leave for work M-F by 6:15-30. Week days can be long, and like for so many weekends, so not long enough.
On July 5, 2009, my first birthday without my mother, (she passed away 10/27/08) I was doing some of my usual medical reading and research. Something I have done, like reading the obituaries, since I was in high school. I happen to come upon the clinical trials page of the JDRF (Juvenile Diabetes Research Foundation). On reading through some of the information, I came upon the Islet Transplant Trial. This trial is in its second phase on humans and has had remarkable success thus far. After spending the afternoon reading, and contemplating, I sent off an email requesting more information and started yet another round of investigation into this finding.
20+ years ago, while pregnant with my daughter, the Edmonton Protocol was underway and I was asked to take part in the pump trial. I opted not to having seen the size of the thing at the time and I was already lugging around an extra 40 pounds of baby! I worked very hard to keep things under control while pregnant, having discovered that my unstable blood sugars had most likely been a large cause of the miscarriages I had suffered prior to the successful child. It was a long, hairy (no pun intended) 9 months. I was on multiple insulin injections, 6-8 times a day, and just as many, if not more finger pricks. There are many things, (glucose monitors, insulin pumps, insulin pens) that were not available or even in production, when I was first diagnosed in 1972.
The technology of managing this disease has come almost full circle since being diagnosed. I remember the glass test tubes, the dipsticks, it was horrible. As a kid of 9, having had experienced what I did and almost afraid to tell anyone (I saw rubber room in my future at that point), I believe my life changed forever in more ways than one. I don't remember much of my life prior to being diagnosed, your basic dysfunctional family I guess. Two things come to mind, a friend, moved away, I got a "virus." and missed the first month of school, and walking through a Kmart, gulping back a 2 liter bottle of Coke and having it go right through (literally) me by the time we hit the back of the store. Not much was clear after that, one last remembrance was me collapsing on the steps to the hospital. I spent a long time, almost 6 weeks in the hospital. At that time, I am not sure they had any real grip on the process of management.
I was taken to the Children's Hospital in Boston, who believed in a little less stringent management protocol. "Let the kid be a kid" .... to a point. With the Joslin Clinic right across the street, they were much more structured, weighing and measuring of food, etc. I do remember my mother saying something to the effect of "I have 6 kids!" I did pick up on the whole process, but putting that process into play, was a long, difficult road for me and a no doubt living hell for my mother. I had a huge chip on my shoulder, I did not make life easy by any means. I pushed the envelope every chance I got. I did not like being told I couldn't do something, I still don't. I was told "you shouldn't get pregnant, you can't wear a pump." Watch me!! I am an only girl, if the boys can do it, why can't I? (always seemed to be my thought process). In theory, I can most likely do it better!!! LOL ;P
Again, (get used to it, I do it a lot) I am sort of rambling off track here. There is a lot of ground to cover.
I have learned a lot about myself, my body, and this disease over the years. Especially seeing as I made it past 21!!! LOL .... guess that is a perfect example of "don't tell me what to do" ...LOL.
In the coming months, lots of the past methods of doing things, blended with the science of today will hopefully help to clarify the big picture of where we stand today in regard to being close to a cure. I know that with any transplant, patients are required to take immunosuppresant drugs, to ward off rejection, which is sort of a major trade off if you think about it. To those of us that have opted to plow ahead, most of us have thought long and hard about the risks, benefits, and alternatives that lie ahead, and what we are willing to do to continue on this earth. .
I would love to make this sort of a Q&A forum until we get to the point of actual happenings.
I am 90% complete with all my paperwork and medical records being sent to the UCSF for review. I have met the criteria for transplant. Two endocrinologists, have told me, do it now while you have the opportunity, as "these lows are going to kill you if they continue." No sugar coating there hey??!! I could be looking at going to San Francisco to meet the team and review the paperwork, and protocol by the end of the year. That is 5 months from the time of inquiry, to this point. I was told that for many patients, it takes a year or better to get all their paperwork in, never mind getting to begin the testing process. It is a very frightening experience, but also, for me, a totally exciting experience to look forward to.
Let's get it said right from the get-go, I am not afraid to die, I am afraid of the mess I am going to leave behind. This lack of fear on my part with whatever may happen to us when we leave here, is brought to me by the 3 (that I can recall) near death experiences I have encountered over the years, the first being at age 9. It has a way of holding a place in the back of your mind as to how we might live of lives. Perserverance in the face of adversity ... lol ... I love that line!!
Okay ... dog has to go out ... I will review and try to check in on a daily or every other day basis until we get things really rolling.
Thanks for coming along!!
B
Saturday, September 26, 2009
Day 1 of the blog
Ok ... having never done this blog stuff before. The first few days/maybe weeks of this will be sort of a test for tweeking. Now, all you "techies" are going to help me with this, right?
Well ... the profile to the right should get everyone started on the shady past...LOL. I am always open to questions, if you don't get an answer, then you know you most likely crossed a line in which it will not be answered on the world wide web. I do still like my sense of privacy. In this forum, I will be invading my own privacy, by sharing some pretty intense happenings in the trial process of a potential cure for Type I diabetics and some perhaps not so well-known facts about the disease.
Let the test begin ....
et63
Well ... the profile to the right should get everyone started on the shady past...LOL. I am always open to questions, if you don't get an answer, then you know you most likely crossed a line in which it will not be answered on the world wide web. I do still like my sense of privacy. In this forum, I will be invading my own privacy, by sharing some pretty intense happenings in the trial process of a potential cure for Type I diabetics and some perhaps not so well-known facts about the disease.
Let the test begin ....
et63
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