What an afternoon it has been.
At 2:38 I received a phone call from a patient advocate out of Las Vegas. We were on the phone for over an hour with details, questions, explainations, itinerary, lodging, transport, follow up labs, etc. IT WAS ALL GOOD!!!
I am scheduled (confirmed once they receive my $2500 deposit) to undergo the Adipose stem cell treatment on September 14th at 8:00 AM. It seems almost too good to be true, but have heard from many people who have undergone this sort of treatment that the results are well worth it. The procedure will take 4-5 hours, they remove (liposuction) a golf ball amount of fat from my own body, spin it, clean it, remove the cells, and then infuse them back into my body via IV drip over a 2-3 hour period. All done in the same day, then they return me to my hotel suite in Brownsville to return back to Phoenix the next day. Minimal time out of work. Cost effective compared to the travel expenses figured out to do the San Francisco trip for 18 months with 45+ days of lodging. I would be a fool not to undergo this at this phase of my life. My endocrinologist here in Phoenix totally supports my decision to do this and will support and supervise me over the process. If in six months (that is the ball park timeframe given) we don't feel I have met optimal results, I can (and most likely will) undergo the placenta stem cell treatment for free. I opted to do the adipose first for a couple of reasons. First, the cells are from my own body, less rejection factor, it is showing very good results in diabetics (not really sure why? That is a research effort that was in its infancy), and ... if it doesn't produce the results I am looking for, they will do the other for free. works for me, as this way, I have a better shot with the two infusions of stem cells in my body in less than a year. Can only help, and hopefully, not only with my insulin intake, but also my bones and pain factors. This treatment has MANY positive outcome potentials!!!
I have looked into the airfare, very doable, and am tempted to book it now, but will wait to see if I am going to have a travel companion, or if I will go it alone. The 290 for ground services, due the night of arrival, for things like my hotel suite, transportation to and from the airport, the hotel to the clinic and back, breakfast at the hotel, an advocate with me at all times (even if I have a travel companion). It is well worth that to have them make all the arrangements. The treatment is $10K, minus the 2500 deposit. The deposit confirms my appointment, balance due after the procedure as I will have that opportunity after meeting with the doctor to back out.... WHICH I HAVE NO INTENTION OF DOING.
(30 minute break)
Just got of the phone with Hillary, she totally agrees with me undergoing this procedure. She is just concerned about me going alone. I told her, it would be nice to have someone with me who not only knows me, but understands the disease and what happens to me when I get that deer in the headlight look of the lights are on, but there is no one home. I will be VERY meticulous about my monitoring, and will ask for guidance from not only the doctor doing the procedure, but my own endocrinologist, Dr. Carrie Phillips in Phoenix. She has agreed to work with me on this as I had said before, I am running out of options, and I scare her. I doubt very much I will see any drastic results in the three day timeframe, but ... again, the monitoring will have to kick up a notch for the next few months to stay on top of it as my insulin needs drop.
Well ... I need to try and calm myself down ... I still have many other responsibilities, and a few added expenses now. I just know, in the long run, it is going to pay off, 10-fold.
Sleep well everyone!!
Will touch base again soon.
Peace and Light in Love
eliza
Friday, July 30, 2010
and suddenly .....
Hi All !!
Just an update.
I have been working long hours/days at the clinic. I am totally exhausted in every sense of the word. My face looks like it develops 2-3 more wrinkles every night. I have been described by co-workers in the past 2 weeks alone as "pitiful", "exhausted," and the all time favorite, "You look like shit!" Thanks!! I am so glad I pushed myself to get out of bed to come and deal with this too.
I have been pushing myself..... way too hard .... and hurting no one except myself. Today, I awoke at my usual 5:00 just to get very dizzy and fuzzy and unstable and decided, no knowing exactly what the problem is/was (sinuses, exhaustion, weather, etc) that I was going to stay home today and remain in bed. I hate doing that when I have SO much to get done at the office, but .... you know that saying ...???
Anyway .... I had sent an email to the ISCI to request a status update on the Adipose treatment. Having previously been told mid-August, I was thrilled to receive a response within 15 minutes from a contact here in the Las Vegas area. She sent me information on the doctor, the area of the clinic, etc. Arrangements are being made to have phone contact later this afternoon. (With little energy currently, I am hopefully optimistic!!)
My passport application was sent out to be renewed just yesterday, and after the phone call I will get started on the financing of it all. If need be, I will take out a loan for this, as I am not ready to call it quits yet, and I am afraid that if I can't undergo this treatment, I might as well just go about life aimlessly, selling off most so that when I do "expire" (got to love that expression) Hilly won't be stuck cleaning up as much mess as I have had to deal with since my mother's passing and waiting on my father. He has not allowed for much "cleaning up" to happen in the past two years, like he is going to get rich or something. He has no concept of what is involved, or how much emotional, as well as physical energy it takes out of me to make that happen. As long as he is content, to hell with anyone else. It's all about him. Having been diagnosed at age 9, it amazes me he has no concept what-so-ever as to what could potentially happen to my life if I don't address them head on and deal with them. The mentality of "if I ignore it, it will go away, or doesn't exist," is NOT an option for me!!!
So ... with that being said ... LOL ... I am going to get a small rest today. Look forward to my phone conversation with the representative later this afternoon, and HOPEFULLY ..... a plan!!! to undergo this treatment and see what happens for me. The fact that my endocrinologist was very supportive of this, providing I did not bring her pamphlets in a language she could not read...LOL... was very encouraging for me. I know that this may not be a cure, but it will with no doubts make my life easier to cope with, has the potential to drastically reduce or eliminate my insulin intake, thus making control and the danger of the drastic lows less, that would be a positive benefit for me at this point. They are more and more occuring, and quick to send me down to unresponsive status. I stare blankly .... one girl at work, is so keen on .... she's getting stupid, she has the totally blank look on her face, or I begin talking to myself like I can't remember what I am doing. She is all over me to correct it before an EMT is required. I, and my coworkers too, keep an excellent eye on me. It at times seems like I am being baby-sat, but deep down, I know they are just concerned, and don't want anything bad to happen. Then .... well.... there are those who think they understand, but really don't, as to how dangerous it can beomce VERY quickly. Even my doctor spent my 20 minute appointment last week shaking her head at me, stating on a couple of occasions how much "you scare me!"
Keep the faith for me..... please .... I am getting very worn out. I want my life to be somewhat of value, I don't want to work so hard and not be able to enjoy anything, or only have enough energy to go to work, and NOTHING else. (which is what it has been like now for a few months.) I am tired, but am still very hopeful, have some of my fight back, in a more reserved manner than before, but back.
Will update again this weekend.
Peace and Light in Love
Eliza
PS: Check out the new link off to the right on Lauren's Hope Medical ID jewelry. I was told that I should be wearing an ID. I was against them mostly due to the tacky/cheesy look of them, and therefore have not worn one since I was in middle school. Anyway ... I ordered a beautiful awareness ID for comparable pricing as many of the "cheesy" companies. Check out the website ... some of them are really pretty!! ( They have manly stuff too!!! :D )
Just an update.
I have been working long hours/days at the clinic. I am totally exhausted in every sense of the word. My face looks like it develops 2-3 more wrinkles every night. I have been described by co-workers in the past 2 weeks alone as "pitiful", "exhausted," and the all time favorite, "You look like shit!" Thanks!! I am so glad I pushed myself to get out of bed to come and deal with this too.
I have been pushing myself..... way too hard .... and hurting no one except myself. Today, I awoke at my usual 5:00 just to get very dizzy and fuzzy and unstable and decided, no knowing exactly what the problem is/was (sinuses, exhaustion, weather, etc) that I was going to stay home today and remain in bed. I hate doing that when I have SO much to get done at the office, but .... you know that saying ...???
Anyway .... I had sent an email to the ISCI to request a status update on the Adipose treatment. Having previously been told mid-August, I was thrilled to receive a response within 15 minutes from a contact here in the Las Vegas area. She sent me information on the doctor, the area of the clinic, etc. Arrangements are being made to have phone contact later this afternoon. (With little energy currently, I am hopefully optimistic!!)
My passport application was sent out to be renewed just yesterday, and after the phone call I will get started on the financing of it all. If need be, I will take out a loan for this, as I am not ready to call it quits yet, and I am afraid that if I can't undergo this treatment, I might as well just go about life aimlessly, selling off most so that when I do "expire" (got to love that expression) Hilly won't be stuck cleaning up as much mess as I have had to deal with since my mother's passing and waiting on my father. He has not allowed for much "cleaning up" to happen in the past two years, like he is going to get rich or something. He has no concept of what is involved, or how much emotional, as well as physical energy it takes out of me to make that happen. As long as he is content, to hell with anyone else. It's all about him. Having been diagnosed at age 9, it amazes me he has no concept what-so-ever as to what could potentially happen to my life if I don't address them head on and deal with them. The mentality of "if I ignore it, it will go away, or doesn't exist," is NOT an option for me!!!
So ... with that being said ... LOL ... I am going to get a small rest today. Look forward to my phone conversation with the representative later this afternoon, and HOPEFULLY ..... a plan!!! to undergo this treatment and see what happens for me. The fact that my endocrinologist was very supportive of this, providing I did not bring her pamphlets in a language she could not read...LOL... was very encouraging for me. I know that this may not be a cure, but it will with no doubts make my life easier to cope with, has the potential to drastically reduce or eliminate my insulin intake, thus making control and the danger of the drastic lows less, that would be a positive benefit for me at this point. They are more and more occuring, and quick to send me down to unresponsive status. I stare blankly .... one girl at work, is so keen on .... she's getting stupid, she has the totally blank look on her face, or I begin talking to myself like I can't remember what I am doing. She is all over me to correct it before an EMT is required. I, and my coworkers too, keep an excellent eye on me. It at times seems like I am being baby-sat, but deep down, I know they are just concerned, and don't want anything bad to happen. Then .... well.... there are those who think they understand, but really don't, as to how dangerous it can beomce VERY quickly. Even my doctor spent my 20 minute appointment last week shaking her head at me, stating on a couple of occasions how much "you scare me!"
Keep the faith for me..... please .... I am getting very worn out. I want my life to be somewhat of value, I don't want to work so hard and not be able to enjoy anything, or only have enough energy to go to work, and NOTHING else. (which is what it has been like now for a few months.) I am tired, but am still very hopeful, have some of my fight back, in a more reserved manner than before, but back.
Will update again this weekend.
Peace and Light in Love
Eliza
PS: Check out the new link off to the right on Lauren's Hope Medical ID jewelry. I was told that I should be wearing an ID. I was against them mostly due to the tacky/cheesy look of them, and therefore have not worn one since I was in middle school. Anyway ... I ordered a beautiful awareness ID for comparable pricing as many of the "cheesy" companies. Check out the website ... some of them are really pretty!! ( They have manly stuff too!!! :D )
Tuesday, July 20, 2010
Not unitl August
Hello All!!
I hope everyone is enjoying their summer. It would appear that a majority of the US is undergoing a heatwave.
I went to Phoenix today to visit with my endocrinologist. Appointment went as well as can be expected. She will continue to do all the usual following. We discussed that stem cell treatment. She was very supportive of my undergoing this treatment given all my lows. She spent a good portion of the appointment shaking her head. When I ask "what am I suppose to do" she states we need to do something about these lows. Again, she shakes her head and states "they really worry me for you." Well.... they worry me too!! They are scary, she admits that she feels I am handling the situation as well as can be expected. She acknowledged my being very down in regard to being rejected from the islet study. She agrees that in regard to the stem cell treatment, even if it doesn't stop my need for insulin, it will, like the islets, reduce my symptoms of the low blood sugars thus reducing my risk of danger and/or death. I tell her that I am totally exhausted, that if and when my blood sugars drop at work that it takes me several hours depending on the severity of them to bounce back, leaving me in a sort of brain death. It sucks. She acknowledges my fear and frustration. She is a very nice woman, much younger than I, but on her game just the same. She also checked my feet, she is always crawling me about my feet. How I shouldn't wear open toed shoes ... etc. etc ... LOL ... I told her about just being cut loose from the boot in which I had been sporting since just after my last appointment three months ago!! Today ... me sporting my Birkenstocks ... LOL.
Okay ... well .... it is looking like August before I get work on the Adipose stem cell treatment. I have opted to try this first, the cells coming from my own fat tissue. Not like I don't have enough of that to spare. If after 4-6 months we see no real benefit, I will undergo the placenta stem cell treatment in hopes of better results. I am holding out hope and continue to pray for yet more time on this planet. I still have some things I would like to do, see, feel, etc. A girl at work made a comment to me last week stating, "Everyone I talk to who has met you or has anything to do with you, just loves you!!! I don't get it." She laughs uncontrollably, stating that at times, often when "stupid", I can be a tad difficult, but seem to bounce back with the diversity card. This too shall pass. It just takes a whole lot longer these days. I bottomed out at work a couple of weeks ago, Nika, my gaurdian angel in one of the offices, is helping me, keeping an eye on me, when my boss comes back and starts talking rather quickly. She states to my boss that "she is a little on the stupid side at the moment", my boss waves it off and continues talking. Nika then proceeds to explain to her that when I am in this state, I am not comprehending a thing that is being said to me. It is no wonder I still have a job, or that they feel I am so good at what I do. For the most part, almost everyone knows what happens in these episodes, some better than others, and they all keep a watchful eye on me. Unfortunately, I feel rather "needy" at times and not always worthy of the attention when it disrupts not only my productivity, but that of my co-workers as well. I have found myself in deep thought recently as to how long I can continue at the current pace I have been pushing myself to maintain...?????
So, as soon as I hear, you folks will hear.
Again, thanks for the continued support and prayers. I very much appreciate them.
I need to get my passport updated so I will be ready to travel.
Be well and enjoy the summer!!!
Peace and Light
et
I hope everyone is enjoying their summer. It would appear that a majority of the US is undergoing a heatwave.
I went to Phoenix today to visit with my endocrinologist. Appointment went as well as can be expected. She will continue to do all the usual following. We discussed that stem cell treatment. She was very supportive of my undergoing this treatment given all my lows. She spent a good portion of the appointment shaking her head. When I ask "what am I suppose to do" she states we need to do something about these lows. Again, she shakes her head and states "they really worry me for you." Well.... they worry me too!! They are scary, she admits that she feels I am handling the situation as well as can be expected. She acknowledged my being very down in regard to being rejected from the islet study. She agrees that in regard to the stem cell treatment, even if it doesn't stop my need for insulin, it will, like the islets, reduce my symptoms of the low blood sugars thus reducing my risk of danger and/or death. I tell her that I am totally exhausted, that if and when my blood sugars drop at work that it takes me several hours depending on the severity of them to bounce back, leaving me in a sort of brain death. It sucks. She acknowledges my fear and frustration. She is a very nice woman, much younger than I, but on her game just the same. She also checked my feet, she is always crawling me about my feet. How I shouldn't wear open toed shoes ... etc. etc ... LOL ... I told her about just being cut loose from the boot in which I had been sporting since just after my last appointment three months ago!! Today ... me sporting my Birkenstocks ... LOL.
Okay ... well .... it is looking like August before I get work on the Adipose stem cell treatment. I have opted to try this first, the cells coming from my own fat tissue. Not like I don't have enough of that to spare. If after 4-6 months we see no real benefit, I will undergo the placenta stem cell treatment in hopes of better results. I am holding out hope and continue to pray for yet more time on this planet. I still have some things I would like to do, see, feel, etc. A girl at work made a comment to me last week stating, "Everyone I talk to who has met you or has anything to do with you, just loves you!!! I don't get it." She laughs uncontrollably, stating that at times, often when "stupid", I can be a tad difficult, but seem to bounce back with the diversity card. This too shall pass. It just takes a whole lot longer these days. I bottomed out at work a couple of weeks ago, Nika, my gaurdian angel in one of the offices, is helping me, keeping an eye on me, when my boss comes back and starts talking rather quickly. She states to my boss that "she is a little on the stupid side at the moment", my boss waves it off and continues talking. Nika then proceeds to explain to her that when I am in this state, I am not comprehending a thing that is being said to me. It is no wonder I still have a job, or that they feel I am so good at what I do. For the most part, almost everyone knows what happens in these episodes, some better than others, and they all keep a watchful eye on me. Unfortunately, I feel rather "needy" at times and not always worthy of the attention when it disrupts not only my productivity, but that of my co-workers as well. I have found myself in deep thought recently as to how long I can continue at the current pace I have been pushing myself to maintain...?????
So, as soon as I hear, you folks will hear.
Again, thanks for the continued support and prayers. I very much appreciate them.
I need to get my passport updated so I will be ready to travel.
Be well and enjoy the summer!!!
Peace and Light
et
Tuesday, June 22, 2010
Snail progress
Hi !!
As I approach my 47th birthday (1 year from when I approached the trial) I find myself wondering ... how many more may I be able to have? (hoping to make at least 50, Hilly has this "pin the junk on the hunk game" she is dying to play at a party :P) Seriously, I do wonder, not preoccupied mind you, but always in the back of my mind. What will the future hold for me?
In my continued reading and research I have been in contact with the International Stem Cell Institute. I have also been in contact with the folks at UCSF and with my request for my records and test results that were done while in San Francisco for the trial testing, they have agreed to send those to me and wished me the very best and to "keep us posted" on my progress and happenings.
Now ... I know that people are most likely thinking I am crazy, but I do not believe that in the true sense of the definition. People have been undergoing stem cell therapy/treatment for many years (15-18 in some areas of the world) and with REMARKABLE results for many diseases and afflictions to include; heart disease; MS; neurodegenerative diseases; arthritis, and YES .... type I diabetes!! This is my ultimate goal (along with falling in love for real just once before I die...LOL). When the paperwork is all in order I will fax it all off to be reviewed. For now, I am going to keep the details sort of hush-hush as I don't want to put myself in that "all positive, everything is going to go great" mentality and setting myself up for the same sort of devastating disappointment I felt with I was rejected from the Islet trial. I really did take that hit hard.
I will say this about stem cell treatment. It will be much faster, I will have to travel, but not for weeks at a time, and will be able to go about my life with no more than the monitoring of my BGs as the cells grow and begin to do their stuff (which could take 3-6 months. The great thing about stem cells is that there is no immunosuppressant drugs involved, therefore, less risk of other organ damage or failure. It is amazing science .... one only needs to have an open mind to the science and outcome. Now, why would the US want to jeopardize all that pharmaceutical income by actually curing a disease when there is so much potential to keep folks on a drug the rest of their lives?? Politics .... not one of my favorite subjects. So, in my continued determined state of mind I will continue to fight for what I believe is the right action not only for me, but for so many others that can benefit. Not only that, I am going to scream from the rooftops when it all goes well and I can promote the treatment to those I know and love who suffer from this disease, and hope that others might see the best in it.
Of course, for me, the funding will remain an issue, but not remotely close to what would have had to come into play for travel back and forth to California for 18 months. It is a relatively doable amount and hopefully with only one treatment. It can take a couple of treatments given the disease, type of cells used, and a couple of other (what I consider minor) factors.
I will plug on in the meantime.
I am awaiting on the paperwork. I am still working, more than ever. Hillary is about to start her 2nd semester in the nursing program and continues to support my decision to make my future a little brighter and much more healthy.
So ... please stay tuned for more information and I will post as I get information about the actual treatment program and when I hope to have it take place.
Thanks again, to all of you who have continued to keep me in your prayers, and support my decision on keeping me around for a little while longer. I have never really been one who was aware of what her purpose was here on this plane, but, I do feel that this venture is part of it. Consider me the sacrificial lamb if you will for those who may be skeptical. It's all good!! For if nothing else, I came into your life, touched you in some manner, and lingered there for some reason. Only the Big Guy knows my destination for sure, but I hope that my being a part of your lives has made a difference in some small way.
Peace and Light
et
As I approach my 47th birthday (1 year from when I approached the trial) I find myself wondering ... how many more may I be able to have? (hoping to make at least 50, Hilly has this "pin the junk on the hunk game" she is dying to play at a party :P) Seriously, I do wonder, not preoccupied mind you, but always in the back of my mind. What will the future hold for me?
In my continued reading and research I have been in contact with the International Stem Cell Institute. I have also been in contact with the folks at UCSF and with my request for my records and test results that were done while in San Francisco for the trial testing, they have agreed to send those to me and wished me the very best and to "keep us posted" on my progress and happenings.
Now ... I know that people are most likely thinking I am crazy, but I do not believe that in the true sense of the definition. People have been undergoing stem cell therapy/treatment for many years (15-18 in some areas of the world) and with REMARKABLE results for many diseases and afflictions to include; heart disease; MS; neurodegenerative diseases; arthritis, and YES .... type I diabetes!! This is my ultimate goal (along with falling in love for real just once before I die...LOL). When the paperwork is all in order I will fax it all off to be reviewed. For now, I am going to keep the details sort of hush-hush as I don't want to put myself in that "all positive, everything is going to go great" mentality and setting myself up for the same sort of devastating disappointment I felt with I was rejected from the Islet trial. I really did take that hit hard.
I will say this about stem cell treatment. It will be much faster, I will have to travel, but not for weeks at a time, and will be able to go about my life with no more than the monitoring of my BGs as the cells grow and begin to do their stuff (which could take 3-6 months. The great thing about stem cells is that there is no immunosuppressant drugs involved, therefore, less risk of other organ damage or failure. It is amazing science .... one only needs to have an open mind to the science and outcome. Now, why would the US want to jeopardize all that pharmaceutical income by actually curing a disease when there is so much potential to keep folks on a drug the rest of their lives?? Politics .... not one of my favorite subjects. So, in my continued determined state of mind I will continue to fight for what I believe is the right action not only for me, but for so many others that can benefit. Not only that, I am going to scream from the rooftops when it all goes well and I can promote the treatment to those I know and love who suffer from this disease, and hope that others might see the best in it.
Of course, for me, the funding will remain an issue, but not remotely close to what would have had to come into play for travel back and forth to California for 18 months. It is a relatively doable amount and hopefully with only one treatment. It can take a couple of treatments given the disease, type of cells used, and a couple of other (what I consider minor) factors.
I will plug on in the meantime.
I am awaiting on the paperwork. I am still working, more than ever. Hillary is about to start her 2nd semester in the nursing program and continues to support my decision to make my future a little brighter and much more healthy.
So ... please stay tuned for more information and I will post as I get information about the actual treatment program and when I hope to have it take place.
Thanks again, to all of you who have continued to keep me in your prayers, and support my decision on keeping me around for a little while longer. I have never really been one who was aware of what her purpose was here on this plane, but, I do feel that this venture is part of it. Consider me the sacrificial lamb if you will for those who may be skeptical. It's all good!! For if nothing else, I came into your life, touched you in some manner, and lingered there for some reason. Only the Big Guy knows my destination for sure, but I hope that my being a part of your lives has made a difference in some small way.
Peace and Light
et
Tuesday, June 8, 2010
Hello Everyone!!
It has been almost a month since my last post. So much is going on, still, again, always. I have been doing lots of reading and research, made multiple phone calls. Weeded out those that I don't feel right about in my gut, or for other, what seems like obvious reasons, and again, have the "butterfly feeling" in my gut. It is all a good thing and a step I am so ready to take. I am still in the filling out all the paperwork process, and will need to decide in the next few weeks which way I want to play this hand. I also want to talk with my neurologist and endocrinologist to ensure their support and help with the monitoring of me after the fact. Thank God, I have lived with this disease long enough to know the ins and outs of tweeking my insulin based on any number of scenarios. Not only that, I have been called "obsessive" at times in regard to how often I check my blood sugar. I try to keep a reality grip, but with no real warnings anymore, better safe than sorry right.
I have begun boosting my immune system again, with my whole food supplements, as well as my FRS (started that again just to keep up with my extra work load; another total story). I have such great feelings about this stem cell treatment but am also trying to keep my expectations in check. Research has proven great things, but the idea of going to another country can be a little intimidating. I need to have someone with me who can be aware of me and my symptoms. I, of course, can't be afraid to let whomever travels with me know that I think there may be something wrong. What I find so promising, is there are no immunosuppressants involved, its all about regenerating my own body. How cool is that???
We still have the issue of money, but I think we only need to come up with about $15K and there is the possibility that I can take a loan, and they are going to see about a "scholarship" .... LOL .... Hell, if this works, I will be the freaking poster child. I would nothing better then to show the US government that they are denying so many people, not just Type I diabetics, of potential cures, better quality of life, and all the things that go along with that feeling.
So ... pray, rub your rocks, what ever it is you do to send good karma out to me as I embark on what I truly believe will make the difference.
I will post again soon.
Thank you all for continuing to support me in my venture for continued life.
Peace and Love
et
I have begun boosting my immune system again, with my whole food supplements, as well as my FRS (started that again just to keep up with my extra work load; another total story). I have such great feelings about this stem cell treatment but am also trying to keep my expectations in check. Research has proven great things, but the idea of going to another country can be a little intimidating. I need to have someone with me who can be aware of me and my symptoms. I, of course, can't be afraid to let whomever travels with me know that I think there may be something wrong. What I find so promising, is there are no immunosuppressants involved, its all about regenerating my own body. How cool is that???
We still have the issue of money, but I think we only need to come up with about $15K and there is the possibility that I can take a loan, and they are going to see about a "scholarship" .... LOL .... Hell, if this works, I will be the freaking poster child. I would nothing better then to show the US government that they are denying so many people, not just Type I diabetics, of potential cures, better quality of life, and all the things that go along with that feeling.
So ... pray, rub your rocks, what ever it is you do to send good karma out to me as I embark on what I truly believe will make the difference.
I will post again soon.
Thank you all for continuing to support me in my venture for continued life.
Peace and Love
et
Monday, May 10, 2010
My desperation is in full bloom
After the last post ... I googled this Dr. Radar ... only to find a page plus in "quack watch," fraud claims, shading dealings, etc. It would appear that my desperation was/is in full bloom.
I will do much more research on any type of stem cell therapy I look to receiving in the future before I post.
Up until this point, I have researched doctors involved in the treatments I sought. Even prior to this venture, when I just needed a surgery. I would want to know where you went to school, were you board certified in your claimed specialty, how long you been in practice, etc.
I am sorry ... talk about slapping myself in the face!!! I know that money is going to be the biggest issue for me making my life a long lived reality. But I refuse to be stupid about it. Apparently, it would seem, that I still have some pulling of my head to do so that it isn't so far up my ass I can't see straight.
Time for bed as I am exhausted from the emotional roller coaster of this ride.
g'night!!
et
I will do much more research on any type of stem cell therapy I look to receiving in the future before I post.
Up until this point, I have researched doctors involved in the treatments I sought. Even prior to this venture, when I just needed a surgery. I would want to know where you went to school, were you board certified in your claimed specialty, how long you been in practice, etc.
I am sorry ... talk about slapping myself in the face!!! I know that money is going to be the biggest issue for me making my life a long lived reality. But I refuse to be stupid about it. Apparently, it would seem, that I still have some pulling of my head to do so that it isn't so far up my ass I can't see straight.
Time for bed as I am exhausted from the emotional roller coaster of this ride.
g'night!!
et
Does intervention come this fast ???
I no sooner hit post on the last blog entry when my cell phone rang.
I had inquired about a stem cell procedure to be done outside the US.
The call came from a man who lives right here in AZ. He and his wife had their son treated for a "can't do anything more" seizure disorder. Hope was dim. They took him to be treated by Dr. William Radar, two years ago. They have had remarkable results. This gentleman shared my outlook about the US government, politics, religion and what happens when you tie all three together in regard to healthcare and those we love.
I am in yet another process. To save my life and hopefully, my hope anyway, to make some noise about why and who is holding up these sorts of treatments in this country. How shameful is it that I would have to travel to another country where these sorts of treatments have been going on for 15-20 years. This particular doctor, treating patients, many type one diabetics, for 15 years!!!
I may not be completely "cured" but this would not require antirejection drugs, and if nothing more, will, as would the islet cell transplant, stop my critical lows allowing me to regain better control.
The problem for me will remain, the funds to get me there and pay for the procedure.
So ... now .... how do I get people to support me in my effort to undergo stem cell therapy??? I know that there are many people out there that believe in this science, and I have stated for a long time that I believe this is where many diseases will eventually end. Please help me continue with the fight.
I should be getting another couple of calls in the next few days in regard to what is expected, review of my case, and approximate expectations of such a treatment on my current status.
Thanks again for the continued support.
PS: The quilt tickets are not yet gone, we contemplated pulling a name from the hundred we sold already, but were holding out hope that something else would come along. Perhaps .... that something has arrived.
et
I had inquired about a stem cell procedure to be done outside the US.
The call came from a man who lives right here in AZ. He and his wife had their son treated for a "can't do anything more" seizure disorder. Hope was dim. They took him to be treated by Dr. William Radar, two years ago. They have had remarkable results. This gentleman shared my outlook about the US government, politics, religion and what happens when you tie all three together in regard to healthcare and those we love.
I am in yet another process. To save my life and hopefully, my hope anyway, to make some noise about why and who is holding up these sorts of treatments in this country. How shameful is it that I would have to travel to another country where these sorts of treatments have been going on for 15-20 years. This particular doctor, treating patients, many type one diabetics, for 15 years!!!
I may not be completely "cured" but this would not require antirejection drugs, and if nothing more, will, as would the islet cell transplant, stop my critical lows allowing me to regain better control.
The problem for me will remain, the funds to get me there and pay for the procedure.
So ... now .... how do I get people to support me in my effort to undergo stem cell therapy??? I know that there are many people out there that believe in this science, and I have stated for a long time that I believe this is where many diseases will eventually end. Please help me continue with the fight.
I should be getting another couple of calls in the next few days in regard to what is expected, review of my case, and approximate expectations of such a treatment on my current status.
Thanks again for the continued support.
PS: The quilt tickets are not yet gone, we contemplated pulling a name from the hundred we sold already, but were holding out hope that something else would come along. Perhaps .... that something has arrived.
et
I need Divine Intervention ... and some guidance
Hello all!!
This could very well be one of the longest posts made to date.
I need to vent .... BIG TIME!!
1. I am a Jack Kervokian fan!!
2. I believe in euthanasia ... and hope that when I get to that point, I am allowed to just go, with my dignity in tact. Pain free of course.
3. I am so incredibly frustrated with the political happenings in this great country we live in. I am referring to the issue that effects me directly and has for a good portion of my life. HEALTH CARE!!
I don't think it has been any great secret that I have been deeply down, depressed for the last several weeks since learning of my rejection from the Islet Cell Transplant Trial. It was all looking so good, to the point they gave me the green light to wrap up the process, and BOOM!! That last blood test, the PRA antibody at 63%. Well .... in the real world, this result would NOT play the part it played in the trial. I believe that my daughter was right on the $$$ with her thought that the FDA and the NIH want only the best possible outcomes for the trial process so that it can be FDA approved. If this was the "REAL WORLD" ... and it become very clear in the aspect that the whole organ pancrease transplant has been offered to me three times now.
Ok ... lets look at this picture.
Why .... because I am/would still wait a little longer for a potential donor. That PRA reading is still going to be 63%, and at the current time, I still have very good kidney function. That was one risk/benefit I was willing to take with the islet trial that I am not willing to take with the pancrease transplant. I would risk losing my kidney function, no doubt sooner than later, and then I would be on the long waiting list for a kidney. Something my loving daughter isn't willing to give up "cause they don't grow back." LOL
So ... lets go to another irk ... WHY .... why is the USA holding up this process? Why are therapies such as adult stem cell therapy (such as that in which Sandra took her son to South America to have done)being done all over the world with excellent results. Why ... is the US so far behind that of other countries in finding a cure, or at this point, a much more human method of treating and managing Type I diabetes. Let me sum it up .... in one word!!! PROFIT !!!
That's right... money ... think about it. Why would the US want to come close to a cure when there are so many phamaceutical companies sitting on Capital Hill with all those politians. Who is getting rich here ... who is benefitting ... well it most certainly is not those of us who suffer with these dreaded diseases. WHY ... would a cure be unleased when there is all this money to be made.
Let me tell you a little bit about my life. I have spent my whole adult life, since turning 18 and falling off my mom's insurance trying to maintain health insurance that would cover my medications. Think of how pissed I was when I wasn't working and pregnant with my daughter to have found out my husband at the time had lost his job and didn't even tell me!!! That she was delivered and then the two of us spending 7 days in the hospital, her in ICU for a day or two. A pricely little venture. Or those insurance companies that required me to be on the job for a year before they would even cover me due to a pre-existing illness. People can bash places like France, Italy, Canada for thier socialized medicine, but it has more pluses than we have going on here in the US. I spent almost $15,000 last year on doctor visits, medications, and pump supplies. Then my tax adviser wants to know what I do for fun?? REALLY !!! What the hell is left when I dish out that sort of $$ just to maintain my life force?? NOTHING!! I have a mortgage, your basic utilities, my yard looks like it belongs to someone who is from the ghetto. There is nothing extra by any means. I spent ten years out of work because I was told to "put your affairs in order." That was in 1996 ... I tried to keep working, but who wants to employ someone that keeps crashing to the point she doesn't even know where she is, never mind what she is doing or who she is talking too? So ... I stopped. Then I spent the next two years trying to prove that this was killing me and making my life totally unmanagable. My PCP at the time finally told me "It's time to hang your pride up and let them know what you live with." You have no idea what that did to me.
That would bring me back to my current mental status. I have been hit that hard again. I am devastated. I am frustrated. I am PISSED!!! I am pissed that like so many others in this country, I am fighting to stay alive, fighting to remain a vital participant in society. During that time, I move across the country. A move I don't not for one minute regret because the weather here in AZ is very good to my bones and body. I am stiff... but no where near what I was living in the cold, humid atomosphere of New England. I went back to college, figured I would use my medical knowledge to make some money. Got certified in medical transcription. Got a job, by shear stroke of luck, and have since (5years) gone even further in my education and last November became certified as a Medical Coding Associate. Now, I had plans to continue my education even a little further and go for the next level and get my BA in Health Information Technology. Well ... I have to be honest. Lately, I don't give a rats ass if I wake up. I am that tired. But, then I get pissed at our society and our govenment for the hold they have on our doctors, researchers, and scientists. Those who had dedicated thier careers to finding cures and acceptable treatments for some of the worst disease on the planet.
So ... again ... WHY!??!! Why are we going to allow the government to hold the keys to if we live or die?? Or that the next generation of children will have to go one day knowing what I have had to learn and know from an age that was just way too young. We have diabetes, childhood cancer, Parkinson's disease (this one has a personal meaning for me as well, my mother suffered from this), spinal injuries. They all sit on the cusp of great advancement ... and that advancement has been proven in other countries for many years. I have discovered in the last couple of weeks that I too, could pursue the adult stem cell therapy in which Sandra took her son out of the country for. One big problem. I don't have the money. I have been a single mother for the past 17 years. I could make lots of excuses as to why I don't have that sort of cash, but why? A good portion of the country is living below the poverty level. I wonder ... how many of those families are dealing with a chronic, deadly, or incurable disease??
My latest quest is that I leave the US to undergo this treatment. With much less risk than a whole organ transplant. In Germany, I can have the procedure done ... 7 days in country with follow up labs that can be done here, for the bargin price of $17,000 .... and that is just for the procedure. I wonder how some of these facilities feel when they have so many patients coming from the US. I can't help but feel that people that can afford to take this sort of action, are so very blessed. As Sandra had stated to me, and what parent wouldn't, do all they can to save thier child?? KUDOS to her and her husband for making that choice!! and that they were able to financially do it.
I told my daughter last week that I was seriously thinking of smoking lots of dope, and becoming some sort of political radical for the healthcare movement!! Oh, by the way, I am all for the legalization of marijuana as well.
I don't know where to turn, I don't know how to come up with these sorts of funds. I am tired of those people who scream religious fanaticism when the term "stem cell" is mentioned. Perhaps they don't know anyone who has ever had to deal with a devastating, deadly, life altering disease. Maybe they should, as I have LOTS of faith in a God that I believe has placed me here on earth for a very good reason. I wish I knew what that reason is, but if it means I have to die for it, so be it. I will do what I have to do to make sure that the science that is out there and ready to be put into place ... takes place!! and sooner rather than later.
I need to seek out some professional guidance. I am going to drill every medical professional I know with intelligence and a working knowledge of the science for guidance in my search. Of all the doctors I deal with on a regular basis in my own life, only one of them, and she isn't a doctor, she is a PA, was in enthusiastic support of my undergoing the trial. Someone out there must have the balls (sorry, I can't think of any better word as my fingers type along this fast) to help and give thier opinions in helping me achieve this goal. I want to maintain my hope. I have prayed hard, and tried to clear my head as to what I should do. Not one person who has been supporting me in this venture has told me to give it all up. On the contrary, they all have told me to take the time I need to regroup, but PLEASE DON'T GIVE UP!!
For that sort of support, I can not thank them enough. They see far further into me than I do at times. I have a knack for turning certain things off until I feel I am ready to plow ahead and let it all go.
We have been working with Maggie to train her to pick up on the scent of my low blood sugars. Which I think she is actually catching onto. The problem is getting her to grab my attention when my blood sugar is 28 like it apparently was last week when I have absolutely no recollection as to how or when I somehow managed to plow my way to the kitchen, or shut my pump off... it is all becoming too familiar, and too damn frightening to think of what might happen if I am alone. A trainer will be working with us in a couple of weeks. Hopefully, and she feels confident, we can teach Maggie to act as my service dog when alone.
For me to undergo a stem cell therapy, would, if nothing else, bring me the joy of lessened lows, less drastic, less fatal/critical. How can I possibly explain these situations to someone who has never witnessed one, or experienced on themselves?? I wouldn't wish an episode of such on anyone.
Please help!!!! I am begging that anyone, someone you know, or a friend knows, help me find the funding, the knowledge to get to where I want to go, and help the others that are deperately waiting for positive results and not empty political promises.
Thanks for letting me rant off ... these are things I am very passionate about and I will not in any way, shape, or form, apoligize for my beliefs. I have been listening to these sorts of promises since the mid-70's "Oh, one day scientists hope" .... come on people ... the scientists are hoping that the politians get thier hands out of the pot!!!
Peace and Love to all for the continued love and support!!
eliza
This could very well be one of the longest posts made to date.
I need to vent .... BIG TIME!!
1. I am a Jack Kervokian fan!!
2. I believe in euthanasia ... and hope that when I get to that point, I am allowed to just go, with my dignity in tact. Pain free of course.
3. I am so incredibly frustrated with the political happenings in this great country we live in. I am referring to the issue that effects me directly and has for a good portion of my life. HEALTH CARE!!
I don't think it has been any great secret that I have been deeply down, depressed for the last several weeks since learning of my rejection from the Islet Cell Transplant Trial. It was all looking so good, to the point they gave me the green light to wrap up the process, and BOOM!! That last blood test, the PRA antibody at 63%. Well .... in the real world, this result would NOT play the part it played in the trial. I believe that my daughter was right on the $$$ with her thought that the FDA and the NIH want only the best possible outcomes for the trial process so that it can be FDA approved. If this was the "REAL WORLD" ... and it become very clear in the aspect that the whole organ pancrease transplant has been offered to me three times now.
Ok ... lets look at this picture.
Why .... because I am/would still wait a little longer for a potential donor. That PRA reading is still going to be 63%, and at the current time, I still have very good kidney function. That was one risk/benefit I was willing to take with the islet trial that I am not willing to take with the pancrease transplant. I would risk losing my kidney function, no doubt sooner than later, and then I would be on the long waiting list for a kidney. Something my loving daughter isn't willing to give up "cause they don't grow back." LOL
So ... lets go to another irk ... WHY .... why is the USA holding up this process? Why are therapies such as adult stem cell therapy (such as that in which Sandra took her son to South America to have done)being done all over the world with excellent results. Why ... is the US so far behind that of other countries in finding a cure, or at this point, a much more human method of treating and managing Type I diabetes. Let me sum it up .... in one word!!! PROFIT !!!
That's right... money ... think about it. Why would the US want to come close to a cure when there are so many phamaceutical companies sitting on Capital Hill with all those politians. Who is getting rich here ... who is benefitting ... well it most certainly is not those of us who suffer with these dreaded diseases. WHY ... would a cure be unleased when there is all this money to be made.
Let me tell you a little bit about my life. I have spent my whole adult life, since turning 18 and falling off my mom's insurance trying to maintain health insurance that would cover my medications. Think of how pissed I was when I wasn't working and pregnant with my daughter to have found out my husband at the time had lost his job and didn't even tell me!!! That she was delivered and then the two of us spending 7 days in the hospital, her in ICU for a day or two. A pricely little venture. Or those insurance companies that required me to be on the job for a year before they would even cover me due to a pre-existing illness. People can bash places like France, Italy, Canada for thier socialized medicine, but it has more pluses than we have going on here in the US. I spent almost $15,000 last year on doctor visits, medications, and pump supplies. Then my tax adviser wants to know what I do for fun?? REALLY !!! What the hell is left when I dish out that sort of $$ just to maintain my life force?? NOTHING!! I have a mortgage, your basic utilities, my yard looks like it belongs to someone who is from the ghetto. There is nothing extra by any means. I spent ten years out of work because I was told to "put your affairs in order." That was in 1996 ... I tried to keep working, but who wants to employ someone that keeps crashing to the point she doesn't even know where she is, never mind what she is doing or who she is talking too? So ... I stopped. Then I spent the next two years trying to prove that this was killing me and making my life totally unmanagable. My PCP at the time finally told me "It's time to hang your pride up and let them know what you live with." You have no idea what that did to me.
That would bring me back to my current mental status. I have been hit that hard again. I am devastated. I am frustrated. I am PISSED!!! I am pissed that like so many others in this country, I am fighting to stay alive, fighting to remain a vital participant in society. During that time, I move across the country. A move I don't not for one minute regret because the weather here in AZ is very good to my bones and body. I am stiff... but no where near what I was living in the cold, humid atomosphere of New England. I went back to college, figured I would use my medical knowledge to make some money. Got certified in medical transcription. Got a job, by shear stroke of luck, and have since (5years) gone even further in my education and last November became certified as a Medical Coding Associate. Now, I had plans to continue my education even a little further and go for the next level and get my BA in Health Information Technology. Well ... I have to be honest. Lately, I don't give a rats ass if I wake up. I am that tired. But, then I get pissed at our society and our govenment for the hold they have on our doctors, researchers, and scientists. Those who had dedicated thier careers to finding cures and acceptable treatments for some of the worst disease on the planet.
So ... again ... WHY!??!! Why are we going to allow the government to hold the keys to if we live or die?? Or that the next generation of children will have to go one day knowing what I have had to learn and know from an age that was just way too young. We have diabetes, childhood cancer, Parkinson's disease (this one has a personal meaning for me as well, my mother suffered from this), spinal injuries. They all sit on the cusp of great advancement ... and that advancement has been proven in other countries for many years. I have discovered in the last couple of weeks that I too, could pursue the adult stem cell therapy in which Sandra took her son out of the country for. One big problem. I don't have the money. I have been a single mother for the past 17 years. I could make lots of excuses as to why I don't have that sort of cash, but why? A good portion of the country is living below the poverty level. I wonder ... how many of those families are dealing with a chronic, deadly, or incurable disease??
My latest quest is that I leave the US to undergo this treatment. With much less risk than a whole organ transplant. In Germany, I can have the procedure done ... 7 days in country with follow up labs that can be done here, for the bargin price of $17,000 .... and that is just for the procedure. I wonder how some of these facilities feel when they have so many patients coming from the US. I can't help but feel that people that can afford to take this sort of action, are so very blessed. As Sandra had stated to me, and what parent wouldn't, do all they can to save thier child?? KUDOS to her and her husband for making that choice!! and that they were able to financially do it.
I told my daughter last week that I was seriously thinking of smoking lots of dope, and becoming some sort of political radical for the healthcare movement!! Oh, by the way, I am all for the legalization of marijuana as well.
I don't know where to turn, I don't know how to come up with these sorts of funds. I am tired of those people who scream religious fanaticism when the term "stem cell" is mentioned. Perhaps they don't know anyone who has ever had to deal with a devastating, deadly, life altering disease. Maybe they should, as I have LOTS of faith in a God that I believe has placed me here on earth for a very good reason. I wish I knew what that reason is, but if it means I have to die for it, so be it. I will do what I have to do to make sure that the science that is out there and ready to be put into place ... takes place!! and sooner rather than later.
I need to seek out some professional guidance. I am going to drill every medical professional I know with intelligence and a working knowledge of the science for guidance in my search. Of all the doctors I deal with on a regular basis in my own life, only one of them, and she isn't a doctor, she is a PA, was in enthusiastic support of my undergoing the trial. Someone out there must have the balls (sorry, I can't think of any better word as my fingers type along this fast) to help and give thier opinions in helping me achieve this goal. I want to maintain my hope. I have prayed hard, and tried to clear my head as to what I should do. Not one person who has been supporting me in this venture has told me to give it all up. On the contrary, they all have told me to take the time I need to regroup, but PLEASE DON'T GIVE UP!!
For that sort of support, I can not thank them enough. They see far further into me than I do at times. I have a knack for turning certain things off until I feel I am ready to plow ahead and let it all go.
We have been working with Maggie to train her to pick up on the scent of my low blood sugars. Which I think she is actually catching onto. The problem is getting her to grab my attention when my blood sugar is 28 like it apparently was last week when I have absolutely no recollection as to how or when I somehow managed to plow my way to the kitchen, or shut my pump off... it is all becoming too familiar, and too damn frightening to think of what might happen if I am alone. A trainer will be working with us in a couple of weeks. Hopefully, and she feels confident, we can teach Maggie to act as my service dog when alone.
For me to undergo a stem cell therapy, would, if nothing else, bring me the joy of lessened lows, less drastic, less fatal/critical. How can I possibly explain these situations to someone who has never witnessed one, or experienced on themselves?? I wouldn't wish an episode of such on anyone.
Please help!!!! I am begging that anyone, someone you know, or a friend knows, help me find the funding, the knowledge to get to where I want to go, and help the others that are deperately waiting for positive results and not empty political promises.
Thanks for letting me rant off ... these are things I am very passionate about and I will not in any way, shape, or form, apoligize for my beliefs. I have been listening to these sorts of promises since the mid-70's "Oh, one day scientists hope" .... come on people ... the scientists are hoping that the politians get thier hands out of the pot!!!
Peace and Love to all for the continued love and support!!
eliza
Sunday, April 25, 2010
Out of the US
This post is aimed at collecting information on foriegn therapies.
I have been doing a lot of reading, and am slightly confused as to the where and why of some of it.
Sandra, know what I do about your journey, would you be willing to share some info with me on how you came to use the facility in Argentina? I have decided that if it is at all possible, I may engage the thought of traveling out of the US to get what I need to extend my life. I have various thought processes on this decision. One, being that I am so tired of the US Government, the FDA, and the multiple other agencys that have thier hands in the process of science that is truely being held up in the US due to the folks that have thier hands in the decison making. Some of these therapies have been going on in other countries for years, WHY? must we get held up in the US, people losing thier battles everyday not just in Type I, but many other devestating diseases. I no longer feel that the US has the "best medical care in the world." How can I? When the rest of the world is flying by us in so many areas, research, education, funding, etc.
You can call this a political rant if you want, but I have watched this for years, and where my own health is concerned, I am tired of waiting. I got bumped from the islet trial based on one blood test. A test that really only put me in a list in which it might take a little longer to find a suitable match. Well .... how much longer will I have to wait for FDA approval? Given the results that are being shown with this advancement, and has been shown for almost 20 years, how much longer? will the US goverenment hold it up, until they can decide who is going to make the most money off it? Who will truely benefit, the rich, how many insurance companies will limit payment of such treatment, and who will be the lucky recipients of such.
Politics is taking over the freedoms in which so many have fought and died for.
If you have information that you may share with me in regard to the treatment you/your son recieved in Argentina, please contact me at my email address: elizatyler5@gmail.com.
Much appreciation ..... and I will continue to make posts as I progress in the next phase of my journey. I can't give up just yet, but I am getting very tired, and frustrated with my health status and trying to keep up with life as most know it.
Thanks!!
Continued Peace and light to you all!!
et
I have been doing a lot of reading, and am slightly confused as to the where and why of some of it.
Sandra, know what I do about your journey, would you be willing to share some info with me on how you came to use the facility in Argentina? I have decided that if it is at all possible, I may engage the thought of traveling out of the US to get what I need to extend my life. I have various thought processes on this decision. One, being that I am so tired of the US Government, the FDA, and the multiple other agencys that have thier hands in the process of science that is truely being held up in the US due to the folks that have thier hands in the decison making. Some of these therapies have been going on in other countries for years, WHY? must we get held up in the US, people losing thier battles everyday not just in Type I, but many other devestating diseases. I no longer feel that the US has the "best medical care in the world." How can I? When the rest of the world is flying by us in so many areas, research, education, funding, etc.
You can call this a political rant if you want, but I have watched this for years, and where my own health is concerned, I am tired of waiting. I got bumped from the islet trial based on one blood test. A test that really only put me in a list in which it might take a little longer to find a suitable match. Well .... how much longer will I have to wait for FDA approval? Given the results that are being shown with this advancement, and has been shown for almost 20 years, how much longer? will the US goverenment hold it up, until they can decide who is going to make the most money off it? Who will truely benefit, the rich, how many insurance companies will limit payment of such treatment, and who will be the lucky recipients of such.
Politics is taking over the freedoms in which so many have fought and died for.
If you have information that you may share with me in regard to the treatment you/your son recieved in Argentina, please contact me at my email address: elizatyler5@gmail.com.
Much appreciation ..... and I will continue to make posts as I progress in the next phase of my journey. I can't give up just yet, but I am getting very tired, and frustrated with my health status and trying to keep up with life as most know it.
Thanks!!
Continued Peace and light to you all!!
et
Sunday, April 11, 2010
Just to let you know ...
I know, it has been 10 days since my last post.
I am just not myself since my trip. I was tired coming home, I was tired going in, excitement, anticipation, etc ... the waiting... the missing father, the sibling which got cut off out/off with no apparent effect on them or their lives, not that I would of or should of expected anything more from any of them. Deeply sad and disappointing .... we can't control others .... I know I can't. I have tried, as stated many times, that I tried to understand their positions, and this particular selfish act on the parts of all of them .... totally disgusting in my opinion. So ... hope they all rest well at night, but can't help but feel there are at least a couple of them that just drown in all out in their Bud bottles and blame me, or someone else for their misfortunes, misguided ways..... whatever.
In any event, my father continues to be a major sucker of my energy and what little of it I may have after trying to put in my hours at work, is very little. My blood sugars have been crashing much more frequently or so it seems since my return from SF in the last two weeks. I want to believe that it is a stress response, but I can't be positive. My mind is really starting to takes it toll on Hillary. She gets so frustrated with me sometime. I can't blame her really, I get totally frustrated with myself.... most days!! I crashed the other night 10 minutes before Michael Buble' took the stage, by the time Hillary ran to the concession to grab a coke, I was "flush and soaked" ....and looking like I was going down according to HT. She just kept telling me to drink the coke ... drink the coke!!! It had dropped to 32 from 153 when we left for the train an hour or so prior. It has occurred everyday, sometimes twice a day in the past two weeks. I think I am starting to pick up a pattern, getting a sort of aura (like when you get a migraine) and the spots start a flying. I get all freaked and weird... I find it scary as I can't seem to get a grip on things and loose all sense of any reality and safety.
Anyway ... I am just trying to get by these last couple of weeks. I have been suffering with terrible allergies this season. Trip to Phoenix this weekend was horrible for that as all the citrus is in bloom. What a nauseating smell in large quantity and I believe I swell all over as a result of my lovely screwed up immune system. I am SO glad I had my sinuses and nose fixed last spring as I can still remember how bad it could get. This is pretty minor given what it used to be like. It is my body's response with the swelling, Maggie took me a hauling the other night so my wrist is out again, I twisted my ankle, and I cut the end of my index finger with a knife yesterday morning at Jim and Pam's. I don't think they thought I looked so great either ... but are always there to just hang out and have a few laughs with us. They baby sat Maggie while Hillary and I went to the concert. Hillary left for home Friday night, and I came home yesterday with Maggie, who by the way, has been sleeping EVER since we left Tempe!! We got home at 5:00 yesterday afternoon!!! Was a wild weekend for the dogs, and Momma looks like I went to the dogs.
Anyway ... just an FYI that I have a call into the center in Tucson with UMC as they too have some phenomenal doctors, one being from Argentina and internationally known for his work in cell therapy. He also sits on a subcommittee with Dr. Peter Stock who I met in SF. We will see what happens here, as they told me I may not wait as long for a donor here in AZ as people do in CA for a multitude of reasons. Either way, whatever happens, I will wait longer because of this antibody. I am really not ready for a whole organ transplant. I am not sure, that without the support of someone being close I would undergo it at all, and I have decided that two years, when Hillary is off and running with her degree .... I want her to be done with me. I did not give birth to her so that she can sit around here and take care of me as I fall apart. I know she will worry, but she needs to get on living her own life. We can always discuss this topic later.
Tomorrow is Monday, It is the start of HIM week ... oh boy, whoopee !! I can only come up with the energy to participate in the antics maybe three out of the 5 days. Tomorrow I will be photographer as I am going to have to take my dad to the doctor after work ... I see me being sucked lifeless by 6:00 pm. Other than the depression over the disappointment, and trying to just listen to my body, which many people don't always understand .... I just want to rest, sleep, drink a ton of water, get some yard work done, of which NONE was accomplished this weekend. I need to come back, get back on the horse so to speak ... it was a hard hit for me, along with the rest of life, it was too much for my body to handle all at once.
Thanks for not giving up on me just yet. I still have plans to get something done, stem cells are a potential option, but not sure it will happen while I am still at a point I would qualify to participate. I can hope that the FDA gets their finger out of their asses and moves the things that should get approved along, which would in actuality at least get me on a list. I knew this was a potential threat, but with all that had come back a go right off the bat, to have the last test blow me out of the water, was shell-shock at best.
Got to go collect for work.
Have a wonderful evening and a fantastic week!!
Love and Light
et
PS: I am sorry, I am not, nor have I ever been a politically correct individual, I think that is part of what has happened to this country ... lets not ruffle any ones feathers, lets not tell it like it is, or the truth for that matter. This is who I am, who I have always been, and I am not going to change it now. :D
I am just not myself since my trip. I was tired coming home, I was tired going in, excitement, anticipation, etc ... the waiting... the missing father, the sibling which got cut off out/off with no apparent effect on them or their lives, not that I would of or should of expected anything more from any of them. Deeply sad and disappointing .... we can't control others .... I know I can't. I have tried, as stated many times, that I tried to understand their positions, and this particular selfish act on the parts of all of them .... totally disgusting in my opinion. So ... hope they all rest well at night, but can't help but feel there are at least a couple of them that just drown in all out in their Bud bottles and blame me, or someone else for their misfortunes, misguided ways..... whatever.
In any event, my father continues to be a major sucker of my energy and what little of it I may have after trying to put in my hours at work, is very little. My blood sugars have been crashing much more frequently or so it seems since my return from SF in the last two weeks. I want to believe that it is a stress response, but I can't be positive. My mind is really starting to takes it toll on Hillary. She gets so frustrated with me sometime. I can't blame her really, I get totally frustrated with myself.... most days!! I crashed the other night 10 minutes before Michael Buble' took the stage, by the time Hillary ran to the concession to grab a coke, I was "flush and soaked" ....and looking like I was going down according to HT. She just kept telling me to drink the coke ... drink the coke!!! It had dropped to 32 from 153 when we left for the train an hour or so prior. It has occurred everyday, sometimes twice a day in the past two weeks. I think I am starting to pick up a pattern, getting a sort of aura (like when you get a migraine) and the spots start a flying. I get all freaked and weird... I find it scary as I can't seem to get a grip on things and loose all sense of any reality and safety.
Anyway ... I am just trying to get by these last couple of weeks. I have been suffering with terrible allergies this season. Trip to Phoenix this weekend was horrible for that as all the citrus is in bloom. What a nauseating smell in large quantity and I believe I swell all over as a result of my lovely screwed up immune system. I am SO glad I had my sinuses and nose fixed last spring as I can still remember how bad it could get. This is pretty minor given what it used to be like. It is my body's response with the swelling, Maggie took me a hauling the other night so my wrist is out again, I twisted my ankle, and I cut the end of my index finger with a knife yesterday morning at Jim and Pam's. I don't think they thought I looked so great either ... but are always there to just hang out and have a few laughs with us. They baby sat Maggie while Hillary and I went to the concert. Hillary left for home Friday night, and I came home yesterday with Maggie, who by the way, has been sleeping EVER since we left Tempe!! We got home at 5:00 yesterday afternoon!!! Was a wild weekend for the dogs, and Momma looks like I went to the dogs.
Anyway ... just an FYI that I have a call into the center in Tucson with UMC as they too have some phenomenal doctors, one being from Argentina and internationally known for his work in cell therapy. He also sits on a subcommittee with Dr. Peter Stock who I met in SF. We will see what happens here, as they told me I may not wait as long for a donor here in AZ as people do in CA for a multitude of reasons. Either way, whatever happens, I will wait longer because of this antibody. I am really not ready for a whole organ transplant. I am not sure, that without the support of someone being close I would undergo it at all, and I have decided that two years, when Hillary is off and running with her degree .... I want her to be done with me. I did not give birth to her so that she can sit around here and take care of me as I fall apart. I know she will worry, but she needs to get on living her own life. We can always discuss this topic later.
Tomorrow is Monday, It is the start of HIM week ... oh boy, whoopee !! I can only come up with the energy to participate in the antics maybe three out of the 5 days. Tomorrow I will be photographer as I am going to have to take my dad to the doctor after work ... I see me being sucked lifeless by 6:00 pm. Other than the depression over the disappointment, and trying to just listen to my body, which many people don't always understand .... I just want to rest, sleep, drink a ton of water, get some yard work done, of which NONE was accomplished this weekend. I need to come back, get back on the horse so to speak ... it was a hard hit for me, along with the rest of life, it was too much for my body to handle all at once.
Thanks for not giving up on me just yet. I still have plans to get something done, stem cells are a potential option, but not sure it will happen while I am still at a point I would qualify to participate. I can hope that the FDA gets their finger out of their asses and moves the things that should get approved along, which would in actuality at least get me on a list. I knew this was a potential threat, but with all that had come back a go right off the bat, to have the last test blow me out of the water, was shell-shock at best.
Got to go collect for work.
Have a wonderful evening and a fantastic week!!
Love and Light
et
PS: I am sorry, I am not, nor have I ever been a politically correct individual, I think that is part of what has happened to this country ... lets not ruffle any ones feathers, lets not tell it like it is, or the truth for that matter. This is who I am, who I have always been, and I am not going to change it now. :D
Thursday, April 1, 2010
Time to adjust
Hello ...
Sorry I haven't posted this week. I have had a really stressful, chaotic week, personally and at work.
I have inquired on some info regarding what it means for me in the long run given my PRA results. I will explain in a more detailed blog entry over the weekend.
Just wanted to touch base, let everyone know I am still alive, and that it has just been a really hard week for me trying to ingest all the information and trying to muster up the energy to continue on, My inquiry on the whole organ transplant is a decision I am not yet ready to commit too. I am confident that I can be placed on a list and that the wait will just be longer than I had hoped. But, given the information I received, this would hold true regardless of the type of transplant I would be waiting for.
Know that I am trying to regroup and get my mind back into a good place, preferrably before my body gives out completely. In all the chaos of work, this news (which really has hit me hard, coping and processing it is not in my time committments) and trying to get my father settled and still dealing with his lack of reality (his driving, his living situation, etc.) I am just spent, totally exhausted, and several times this week have hit the pillows prior to seven PM.
On that note, tomorrow is Friday, and I have many things I want to accomplish this weekend in regard to spring cleaning ... hahahahaha ..... we will see how far I get with that project, and of course my taxes need to be completed.
Wishing everyone peace and tranquility!!
g'night
et
Sorry I haven't posted this week. I have had a really stressful, chaotic week, personally and at work.
I have inquired on some info regarding what it means for me in the long run given my PRA results. I will explain in a more detailed blog entry over the weekend.
Just wanted to touch base, let everyone know I am still alive, and that it has just been a really hard week for me trying to ingest all the information and trying to muster up the energy to continue on, My inquiry on the whole organ transplant is a decision I am not yet ready to commit too. I am confident that I can be placed on a list and that the wait will just be longer than I had hoped. But, given the information I received, this would hold true regardless of the type of transplant I would be waiting for.
Know that I am trying to regroup and get my mind back into a good place, preferrably before my body gives out completely. In all the chaos of work, this news (which really has hit me hard, coping and processing it is not in my time committments) and trying to get my father settled and still dealing with his lack of reality (his driving, his living situation, etc.) I am just spent, totally exhausted, and several times this week have hit the pillows prior to seven PM.
On that note, tomorrow is Friday, and I have many things I want to accomplish this weekend in regard to spring cleaning ... hahahahaha ..... we will see how far I get with that project, and of course my taxes need to be completed.
Wishing everyone peace and tranquility!!
g'night
et
Thursday, March 25, 2010
Devastating hit
Hi everyone ....
Well ... yesterday at lunch time I had spoken with Joan, one of the transplant nurses. In our conversation, she stated that Debbie was still waiting on one test to return from PA, and that she didn't see any reason I couldn't start my logs to begin the final heave-ho. Well ... I was all pumped at that point, the final stretch, everything that had been done with the exception of this one test, had come back a go, and the team seemed very optimistic for my acceptance into the trial and to work with me as well. Then ... 4:15pm comes, I am in a meeting with my boss, Tina, and my cell phone begins to ring. I look at the number and immediately recognize it as Debbie's from UCSF. I told Tina, I really needed to take this call, she waits with me for a minute, then leaves the room as I believe, in hind sight, she heard my questionable tone change. Debbie stated that my PRA (Panel Reactive Antigen) had come back high, over the NIH limit. As she continued talking, I guess I was numb, as I missed some of what she said, and only upon my asking, "does this mean I am not eligible?" She responded that the cut off for this antigen regarding the trial is 50%, mine came back at 63%tile!! What did this mean? Where does this leave me? What am I to do, if all my doctors are telling me this is my only option right now, and I would be a fool not to take this chance .... what am I to do???
Well ... upon further discussion it is explained to me. PRA which is an antibody for which my only way of obtaining such a high level would have been from multiple pregnancy and miscarriage, as I have never had a blood transfusion, and this would have been my first and only transplant. The "anti-human" antibody ... Hillary explained in perfect terms to me upon my arrival home .... your body didn't want those little monsters in you, so it attacked, developing the antibody. She then proclaimed to me that she was "THE MIRACLE CHILD AHHHHHHHHHHH!!!" and I laughed through my tears. I was devastated last night, numb, exhausted from all the emotional stress of not only the transplant process, but all the family crap that has gone on in recent couple of years, since losing my mother.
What it means at this point. I was told, that although the NIH (National Institute of Health) makes the protocol guidelines and cutoff scores, this does not make me ineligible for transplant. ONLY the trial. The results of this trial may be public sooner than anyone thinks. Now, for the other depressing fact. It would appear that due to this 63% antigen factor, I will most likely wait longer for a suitable match with my donor, as well as a potential "desensitizing" treatment known as "plasmapheresis" or a treatment of cleansing my blood of the antibodies. This is something I still need to do some reading on, as it is all biology type stuff.
In a nut shell .... I am very down. This is something I guess I would rather have found out now, given the fact my health is failing, in spite of the results, I still have good kidney function, but I am uncontrollable and it gets worse with each passing week. I too, am sick, with no doubt, a strep infection, living with Hillary who had it last week, and all the stress, emotional and physical that has gone on in just the last two weeks, is catching up with me. I had to come home a couple of hours early today from work, as I couldn't swallow, couldn't keep my eyes open, hurt all over, and am just down. I would like nothing more than to curl up and be left alone.... for like 3-4 days until I could gather my strength again and come out fighting.
Suggestions were made to appeal to the NIH, but Hillary had the perfect scenario for that one. She stated that the NIH is government driven, thus our illustrious FDA. When in trials, they want the best of the best, the people that are most likely to prevail as "success" stories, not the possible rejects such as myself. (Also a risk of the elevated PRA - rejection), therefore, they make the cutoff at that 50% mark, the good 50 stay, the bad 50 go. In spite of this thought process, it is not uncommon 30-40% of all transplant patients, not just for the islets, are likely to have an elevated PRA. So ... that gives me continued hope.
I just need some time to rejuvenate my energy, my strength, my mindset. I feel like I have been beaten up and thrown out with the trash. I need to refocus and I have already started on that. I was told by Debbie, that wonderful little woman who has worked with me for the past 8 months in this process, very upset about having to make the call to me. Telling me how "excited everyone on the floor was to be working with someone like me who was driven, and 'not a whiner' ... that made me laugh!! The doctors and nurses alike all were just so optimistic that I would be a "go" and then this .... have offered up to answer any of my questions and help offer another alternative. I can't help but think that perhaps Doc Peter has eyes for an entire pancreas transplant ... lol ... I know ... I still have to wait for the most difficult of donor matches. But ... I see this as all too possible if I undergo the treatments to help cleanse my system of this antibody ... Hillary asked me this evening if that was something I was considering ... and I responded Yes ... even if it fails, I have the opportunity to gain more controllable blood sugars again, without the drastic, dangerous drops that take me down so hard I lose whole days, and often times a weekend, just coming back from one of these bad episodes. I am tired, and I am not sure how much longer I can keep up this rate of enthusiasm. I want to continue life, but I don't want to do it restricted to my home, or unable to work, and carry on with my simple pleasures of human connections.
So ... fund raising will continue for a while .... I hope to have some input from my new friends, Doc Andy, Doc Peter, (can't remember the names of the other two doctors, but they too, very personable), and of course, Debbie and Joan, who I could feel their disappointment in my being denied into the trial, would keep me in the front of the "what about" list, and hopefully, together, we will come up with a fix for me .... at this point, I would settle for just a patch!!!
Please keep the faith in my pursuit of accomplishing better health in living with this dreaded disease. I have seen the science come a long way in 37 years, as the endocrinologist in SF said, "you must remember the old days" .... LOL .... an appreciation for my long trip perhaps?? .... and the knowledge I have gained thus far. I look to learn even more, but have to admit, this biological breakdown gets mighty confusing the more in depth it gets.
Be well, please remain faithful on my behalf, as well as those kids to come after me!!
Peace and Love
(and a hug tonight too!!... as I could sure use one)
et
Sunday, March 21, 2010
Latest Fundraising Effort
Hi ... a photo of the bracelets which are the latest fundraising effort.
They are baby blue; with small handprint (indicating Juvenile) and the words Hope for a cure!
They are $3 each and are considered an adult large .... fits most comfortably.
Please help .... as stated before ... all proceeds go toward travel expenses and anything left over will be donated to the JDRF ... the organization who backs so much research for this dreaded disease.
THANK YOU !!!!
Bracelets can be ordered through me here on the blog or my FB page, or through Hillary, and/or myself personally. Order 10 or more and we will pay postage.
Welcome this weeks Guest Blogger
Please Welcome, my friend, coworker, travel companion, baby-sitter .... you get the picture.
It is with heartfelt gratitude and appreciation that I present to you this weeks guest blogger, she has stories to tell .... given her fear of needles, the business in which had to be dealt with, and the long travel day in both directions .... I HAD A BLAST!!! Thank you .... do it again??? :D
So please give her a warm response ... lol ... and enjoy your musings as I try and get some photos off my camera. It has been a HELLACIOUS week and now I am sick, Hillary is sick, and tomorrow is Monday .... again.
Peace and Light
et
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Without further adue .... Heeeeeeeeeeerrrrrrre's Deb-Deb !!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hello to all friends, family, and followers of Eliza’s incredible journey. My name is Deb Schultz, but a few refer to me as “Deb-Deb.” I’ve decided to accept the invitation made by Eliza to guest blog for her this week. It’s the least I could do for her following our trip and the week she’s had. My question is, “can you suffer from jet lag if your vacation didn’t even involve an airplane?”
I’ve only had the honor of knowing and working with “Lizer” (as I call her) for the past 3 ½ years. At first, I preferred to keep my distance. I just worked quietly and listened. She sounded pretty tough sometimes, maybe had a hard edge to her. That’s probably why I didn’t know until the last year or so about her digestion … shall we say issues? Let’s just say that Lizer isn’t like the gals back in MN who I chose to be friends with. One afternoon prior to heading out to the back yard at work to take a break, she turned to me and said “pull my finger” as she pointed her crooked little index finger in my direction. Well, I’ve only known of men to actually expel when fingers are pulled, so I was curious as to why Lizer would tell me to do this. So, I did ~ HELLO!!
Now, fast forward to Lizer inquiring about her potential involvement in the Islet Transplant Clinical Trial via e-mail one weekend approximately six months back. She came to work that following Monday and informed us that she had e-mailed someone about becoming involved and that potentially it could mean a road trip to San Francisco. I do believe that I immediately shot my arm up like “oooh, oooh, Mr. Kotter” fashion, and said, “count me in ~ I’ve never been to San Francisco!” You see, I’ve always been up for road trips to places I’ve haven’t seen. Most of the trips I’ve been on have been with my husband, but I just had a feeling that Lizer and I could have a good time. Well, last week it came to pass…the trip to San Francisco that is.
I packed for every possible scenario. I had my GPS bitch for assisting us in finding our way, I had snacks (in part thanks to Kate, a very thoughtful
co-worker), I had my beading supplies, and a good book, but I also had my can of spray. The one that was a powder fresh scent and within easy reach while riding shotgun.
We left Chino Valley area close to 6:00 a.m. Saturday, March 6th. Approximately 13 ½ hours later we were driving across the Bay Bridge, paying our toll to enter into San Francisco. We hadn’t even listened to the radio at all the whole day. I didn’t even nap! My husband would be the first to tell you how unusual that is. I’m usually propped up against the window with my travel pillow and snoozin’ away within 30 minutes of a long road trip. We only stopped a couple of times along the way to grab a bite and then void. The closer we got to our destination, the more pumped I could feel myself becoming. Lizer shared a story about a trip she had with her mom and Hilly where her mom kept answering Hilly’s question of “are we almost there” by saying “we’re creepin’ up on it.” Eventually it was determined that Lizer’s mom had been reading the map upside down! They had been creepin’ up on their destination for quite a while! The last two hours of our drive were definitely the longest. We were beginning to get a little tired, but Lizer believed we were oh so close. Then, all of a sudden, there was the Bay Bridge. We didn’t expect to have to pay a toll to cross, but when we voiced our surprise at that the toll, the toll booth worker exclaimed, “welcome to San Francisco!” … and so it began.
We had an agenda to some degree. Monday would be “meet the staff” at the hospital. We HAD to cross the Golden Gate Bridge at some point. I had a few addresses for bead stores if time permitted. We both wanted to eat in Chinatown. Lizer wanted to see the Pacific Ocean for the first time. We both wanted to eat seafood. Lizer wanted to walk around Haight-Ashbury area, and I had no clue what that even was. Oh yeah, we were gonna take S.F. and cram it into our agenda for the next week.
Some of the highlights as I remember them are when we arrived at the hospital to meet the staff and we’re on the floor we’re supposed to be to meet Debbie, the staff person that Lizer has been e-mailing with and talking to on the phone for the past six months. Problem is we just didn’t have the room number of where to meet her, so we’re inquiring with a passerby. Then, from some number of rooms down the hallway to our left comes this voice that says, “I think I know that voice, is that Eliza?” Sure enough, here comes Debbie around the corner of the doorway with a big grin. Just so you all know, this wasn’t the only time Eliza’s voice was recognized before meeting someone personally. I don’t even want to share the details about walking on Haight-Ashbury window shopping when Lizer announces how clean the window of this bistro shop is where they have bistro tables inside next to the window as she starts to feel the glass, to which there wasn’t any. It was wide open. When she realized this, she cocked her head back (you know that way she does) and begins to cackle. Before long everyone sitting in that window area inside the bistro enjoying their coffees, etc. were laughing right along with Lizer. She just has a way of attracting a crowd occasionally. I continued to hear them laugh as we ventured down the block.
At the risk of making this the longest blog that Lizer has posted to date, I just have to share about the day she almost killed me. Oh yeah, that was when we got lost, the GPS bitch wasn’t helpin’ us out so she got unplugged and shoved in the glove box, and Lizer made a left-hand turn (apparently illegally). Neither one of us saw the huge signs prohibiting the left-hand turn. However San Francisco’s finest informed us, after pulling us over via a bull horn, about all three of those huge signs in addition to a plethora of other S.F. tidbits in the 30 minutes he chatted with the two of us. You’ll be happy to know that Lizer batted her baby blues and no ticket was issued. FYI - it was a double fine zone as well.
There are so many more of these stories that I could share, but if I make this blog that much longer I’ll be hearing about it from Lizer (‘cuz she’s gonna have to cut and paste it in sections to her blog site). Let’s just say that the goals of the week were met. Lizer hasn’t yet received word on all of the tests performed, but she’s still in the running. As great as the trip in itself was, unfortunately Lizer’s re-entry back into life in Chino Valley this week has been tough to say the least. It is when I hear of all the struggles of her week that she’s dealt with in addition to living a life with Type I diabetes that my heart just grieves for her. How much more can one person take? If anyone deserves this opportunity to change their life for the better, it most assuredly is Lizer! I say “bring it on!”
As a side note: Lizer? Thanks for having the courage to inquire about being involved in this transplant in S.F. Thanks for not killing me last week while on our virgin journey. Thanks for the phenomenal conversations. Thanks for just being you. I am believing that you will receive this transplant, it will be timely, it will go smoothly, and you and I can build on this friendship for many more years to come!
Bring it on!
Deb-Deb
It is with heartfelt gratitude and appreciation that I present to you this weeks guest blogger, she has stories to tell .... given her fear of needles, the business in which had to be dealt with, and the long travel day in both directions .... I HAD A BLAST!!! Thank you .... do it again??? :D
So please give her a warm response ... lol ... and enjoy your musings as I try and get some photos off my camera. It has been a HELLACIOUS week and now I am sick, Hillary is sick, and tomorrow is Monday .... again.
Peace and Light
et
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Without further adue .... Heeeeeeeeeeerrrrrrre's Deb-Deb !!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hello to all friends, family, and followers of Eliza’s incredible journey. My name is Deb Schultz, but a few refer to me as “Deb-Deb.” I’ve decided to accept the invitation made by Eliza to guest blog for her this week. It’s the least I could do for her following our trip and the week she’s had. My question is, “can you suffer from jet lag if your vacation didn’t even involve an airplane?”
I’ve only had the honor of knowing and working with “Lizer” (as I call her) for the past 3 ½ years. At first, I preferred to keep my distance. I just worked quietly and listened. She sounded pretty tough sometimes, maybe had a hard edge to her. That’s probably why I didn’t know until the last year or so about her digestion … shall we say issues? Let’s just say that Lizer isn’t like the gals back in MN who I chose to be friends with. One afternoon prior to heading out to the back yard at work to take a break, she turned to me and said “pull my finger” as she pointed her crooked little index finger in my direction. Well, I’ve only known of men to actually expel when fingers are pulled, so I was curious as to why Lizer would tell me to do this. So, I did ~ HELLO!!
Now, fast forward to Lizer inquiring about her potential involvement in the Islet Transplant Clinical Trial via e-mail one weekend approximately six months back. She came to work that following Monday and informed us that she had e-mailed someone about becoming involved and that potentially it could mean a road trip to San Francisco. I do believe that I immediately shot my arm up like “oooh, oooh, Mr. Kotter” fashion, and said, “count me in ~ I’ve never been to San Francisco!” You see, I’ve always been up for road trips to places I’ve haven’t seen. Most of the trips I’ve been on have been with my husband, but I just had a feeling that Lizer and I could have a good time. Well, last week it came to pass…the trip to San Francisco that is.
I packed for every possible scenario. I had my GPS bitch for assisting us in finding our way, I had snacks (in part thanks to Kate, a very thoughtful
co-worker), I had my beading supplies, and a good book, but I also had my can of spray. The one that was a powder fresh scent and within easy reach while riding shotgun.
We left Chino Valley area close to 6:00 a.m. Saturday, March 6th. Approximately 13 ½ hours later we were driving across the Bay Bridge, paying our toll to enter into San Francisco. We hadn’t even listened to the radio at all the whole day. I didn’t even nap! My husband would be the first to tell you how unusual that is. I’m usually propped up against the window with my travel pillow and snoozin’ away within 30 minutes of a long road trip. We only stopped a couple of times along the way to grab a bite and then void. The closer we got to our destination, the more pumped I could feel myself becoming. Lizer shared a story about a trip she had with her mom and Hilly where her mom kept answering Hilly’s question of “are we almost there” by saying “we’re creepin’ up on it.” Eventually it was determined that Lizer’s mom had been reading the map upside down! They had been creepin’ up on their destination for quite a while! The last two hours of our drive were definitely the longest. We were beginning to get a little tired, but Lizer believed we were oh so close. Then, all of a sudden, there was the Bay Bridge. We didn’t expect to have to pay a toll to cross, but when we voiced our surprise at that the toll, the toll booth worker exclaimed, “welcome to San Francisco!” … and so it began.
We had an agenda to some degree. Monday would be “meet the staff” at the hospital. We HAD to cross the Golden Gate Bridge at some point. I had a few addresses for bead stores if time permitted. We both wanted to eat in Chinatown. Lizer wanted to see the Pacific Ocean for the first time. We both wanted to eat seafood. Lizer wanted to walk around Haight-Ashbury area, and I had no clue what that even was. Oh yeah, we were gonna take S.F. and cram it into our agenda for the next week.
Some of the highlights as I remember them are when we arrived at the hospital to meet the staff and we’re on the floor we’re supposed to be to meet Debbie, the staff person that Lizer has been e-mailing with and talking to on the phone for the past six months. Problem is we just didn’t have the room number of where to meet her, so we’re inquiring with a passerby. Then, from some number of rooms down the hallway to our left comes this voice that says, “I think I know that voice, is that Eliza?” Sure enough, here comes Debbie around the corner of the doorway with a big grin. Just so you all know, this wasn’t the only time Eliza’s voice was recognized before meeting someone personally. I don’t even want to share the details about walking on Haight-Ashbury window shopping when Lizer announces how clean the window of this bistro shop is where they have bistro tables inside next to the window as she starts to feel the glass, to which there wasn’t any. It was wide open. When she realized this, she cocked her head back (you know that way she does) and begins to cackle. Before long everyone sitting in that window area inside the bistro enjoying their coffees, etc. were laughing right along with Lizer. She just has a way of attracting a crowd occasionally. I continued to hear them laugh as we ventured down the block.
At the risk of making this the longest blog that Lizer has posted to date, I just have to share about the day she almost killed me. Oh yeah, that was when we got lost, the GPS bitch wasn’t helpin’ us out so she got unplugged and shoved in the glove box, and Lizer made a left-hand turn (apparently illegally). Neither one of us saw the huge signs prohibiting the left-hand turn. However San Francisco’s finest informed us, after pulling us over via a bull horn, about all three of those huge signs in addition to a plethora of other S.F. tidbits in the 30 minutes he chatted with the two of us. You’ll be happy to know that Lizer batted her baby blues and no ticket was issued. FYI - it was a double fine zone as well.
There are so many more of these stories that I could share, but if I make this blog that much longer I’ll be hearing about it from Lizer (‘cuz she’s gonna have to cut and paste it in sections to her blog site). Let’s just say that the goals of the week were met. Lizer hasn’t yet received word on all of the tests performed, but she’s still in the running. As great as the trip in itself was, unfortunately Lizer’s re-entry back into life in Chino Valley this week has been tough to say the least. It is when I hear of all the struggles of her week that she’s dealt with in addition to living a life with Type I diabetes that my heart just grieves for her. How much more can one person take? If anyone deserves this opportunity to change their life for the better, it most assuredly is Lizer! I say “bring it on!”
As a side note: Lizer? Thanks for having the courage to inquire about being involved in this transplant in S.F. Thanks for not killing me last week while on our virgin journey. Thanks for the phenomenal conversations. Thanks for just being you. I am believing that you will receive this transplant, it will be timely, it will go smoothly, and you and I can build on this friendship for many more years to come!
Bring it on!
Deb-Deb
Thursday, March 18, 2010
Could someone tell me what day it is??
Hi All!!
I believe it is Thursday.
I got an email from Joan at UCSF today, telling me that some of the tests are still pending (most likely blood according to Kathy - Thanks) but that everything that has come back so far is okay.
Dad is alert again today, cranky and still not knowing why he is there. I left at 6 as I had to pick up the dog, and Hillary is still there after her shift. I am so tired that I feel like I am moving, even when I am not. I have been fighting this nauseating feeling off and on all day. I don't know if I am getting sick, or it is just all the stress of the last 14 days and no real time for me to process all that is happening. I am being told, and I know that I must do this, but it is so much easier said than done and that is I need to reduce my stress levels and TAKE CARE OF ME!!
That is all I can handle for tonight ... hope to have my camera back tomorrow so that I can perhaps post a couple of photos of my trip to SF. All I really want right now is to crawl in a hole someplace where no one can find me and just sleep .... just nonstop, no emergencies, no stress, no one needing me for anything ..... for just a day or two. I am beginning to feel extremely overwhelmed..... and with all that is going on now, how can I possibly try and push the fundraising, the yard work, my work, my continued education, etc ..... my juggling act is beginning to have balls flying everywhere.
To all I wish a peaceful and comforting night!!
Peace and light
et
I believe it is Thursday.
I got an email from Joan at UCSF today, telling me that some of the tests are still pending (most likely blood according to Kathy - Thanks) but that everything that has come back so far is okay.
Dad is alert again today, cranky and still not knowing why he is there. I left at 6 as I had to pick up the dog, and Hillary is still there after her shift. I am so tired that I feel like I am moving, even when I am not. I have been fighting this nauseating feeling off and on all day. I don't know if I am getting sick, or it is just all the stress of the last 14 days and no real time for me to process all that is happening. I am being told, and I know that I must do this, but it is so much easier said than done and that is I need to reduce my stress levels and TAKE CARE OF ME!!
That is all I can handle for tonight ... hope to have my camera back tomorrow so that I can perhaps post a couple of photos of my trip to SF. All I really want right now is to crawl in a hole someplace where no one can find me and just sleep .... just nonstop, no emergencies, no stress, no one needing me for anything ..... for just a day or two. I am beginning to feel extremely overwhelmed..... and with all that is going on now, how can I possibly try and push the fundraising, the yard work, my work, my continued education, etc ..... my juggling act is beginning to have balls flying everywhere.
To all I wish a peaceful and comforting night!!
Peace and light
et
Wednesday, March 17, 2010
Just an update
Hi ~
No word yet from SF. I know that no news is suppose to be good news, but was hoping to hear as I was told by Monday or Tuesday. I will wait another day or two as it isn't like I have my hands full at this moment.
Just in from hospital. Dad took a 360 degree turn for the worst last night only moments apparently after I left the room. He was agitated upon my leaving and I felt it best that he get some rest, and asked the nurse to keep an eye on him and perhaps check to see if he wanted something to help him sleep. It would seem the Ativan backfired as I was told it often does in elderly patients. He became even more agitated and then became combative which of course required more meds to offset the Ativan. They gave him Haldol and Fentynal. Upon my arrival this morning (late) he was out cold and unresponsive to any sort of stimulation without great irritation and agitation. He was mumbling all sorts of weird things. So I let him be and returned to work as he was out cold, falling asleep mid-sentence. Needless to say, they had to cancel the MRI of his abdomen as he needs to be able to comprehend directions and be alert. I did speak with the kidney doctor at this time. She seems to believe that although the MRI will be much better than the ultrasound, it is still not optimal given that they don't want to aggravate the kidneys with contrast dye (which is very hard on the kidneys). Seems to be theory that it could be cancer. If so, then I am correct in my call that I do believe he is about to do his journey to the other side. It is not like I don't know the classic signs, this isn't the first time, the second time, or the third time, recently, and in my lifetime. I felt bad leaving him tonight, as I don't care who you are, or what you may have done in your life, I don't believe anyone should have to die alone. Hillary called the hospital a few minutes ago to ask them to call her should they need her assistance during the night. He listens to her, and she has a knack for calming him down and making him know that it will be okay. She is scheduled to work tomorrow and they moved dad to the fourth floor this morning (out of ICU) and that is her floor so she will be able to check on him and do the oversight. She told me this evening that I need to break, as I look like crap, feel like crap, and have had multiple stress related high blood sugars since returning home on Saturday.
Ok .... I need to go to bed, it is ten and I still have to work.
Hope to have an update on the testing from SF and if I can start the last 30 days of logs.
Be well !!
Peace and Light
et
No word yet from SF. I know that no news is suppose to be good news, but was hoping to hear as I was told by Monday or Tuesday. I will wait another day or two as it isn't like I have my hands full at this moment.
Just in from hospital. Dad took a 360 degree turn for the worst last night only moments apparently after I left the room. He was agitated upon my leaving and I felt it best that he get some rest, and asked the nurse to keep an eye on him and perhaps check to see if he wanted something to help him sleep. It would seem the Ativan backfired as I was told it often does in elderly patients. He became even more agitated and then became combative which of course required more meds to offset the Ativan. They gave him Haldol and Fentynal. Upon my arrival this morning (late) he was out cold and unresponsive to any sort of stimulation without great irritation and agitation. He was mumbling all sorts of weird things. So I let him be and returned to work as he was out cold, falling asleep mid-sentence. Needless to say, they had to cancel the MRI of his abdomen as he needs to be able to comprehend directions and be alert. I did speak with the kidney doctor at this time. She seems to believe that although the MRI will be much better than the ultrasound, it is still not optimal given that they don't want to aggravate the kidneys with contrast dye (which is very hard on the kidneys). Seems to be theory that it could be cancer. If so, then I am correct in my call that I do believe he is about to do his journey to the other side. It is not like I don't know the classic signs, this isn't the first time, the second time, or the third time, recently, and in my lifetime. I felt bad leaving him tonight, as I don't care who you are, or what you may have done in your life, I don't believe anyone should have to die alone. Hillary called the hospital a few minutes ago to ask them to call her should they need her assistance during the night. He listens to her, and she has a knack for calming him down and making him know that it will be okay. She is scheduled to work tomorrow and they moved dad to the fourth floor this morning (out of ICU) and that is her floor so she will be able to check on him and do the oversight. She told me this evening that I need to break, as I look like crap, feel like crap, and have had multiple stress related high blood sugars since returning home on Saturday.
Ok .... I need to go to bed, it is ten and I still have to work.
Hope to have an update on the testing from SF and if I can start the last 30 days of logs.
Be well !!
Peace and Light
et
Monday, March 15, 2010
I hate Monday's
Good evening all,
Okay ... well, it is 8:00PM, I left the house at 6:30 this morning. I have been to the hospital twice today to see my dad and talk with the doctors, they located my camera in NV and will be mailing that back to me, and .... I worked my 8 plus hours .... very chaotic given what was there, and what came my way, in regard to not only work, but attitudes for something I didn't do as I was not even there last week. Just sort of took it all in stride and tried to deal with it all as it seemed to hit me. I still have some work to do here to drop off at one facility tomorrow before I head back to my office to deal with my work.
No call from the transplant nurse today. I hope that one more day will get me my call, and nothing is or has come back as non-qualifying. Will keep that special thought and prayer in the back of my mind for tomorrow.
Dad update - Work up tests came to the same conclusion that was made back in 11/08. He is not a surgical candidate. They will not operate due to the fact that his kidney function in now shot, his heart is 99% blocked, his carotids are 70% blocked on both sides, he had no viable leg veins for harvesting on for bypass, and would no doubt either die on the table, or end up on a ventilator. He does not want that as he feels that is not life. I give him credit for that. He has also developed some sort of internal bleed as his blood numbers are dropping. As I was getting ready to leave at lunch time I/we were approached by a case manager who provided info and applications for long-term care, tonight, I addressed this as well as a hospice option. Dad feels that he will think about it, but I do believe, as he verbalized it to me that he is going to die. :( I just can't believe, and am still not positive that he is comprehending all of it, that he is (perhaps in a brief lucid thought process, that he is aware of the severity of the situation given that he told my cousin Nancy that he was going home in two days. So in the morning I will see how he responded to the transfusion. He understands that the hospital's job is to keep him alive, period. A nursing home will do pretty much the same. A hospice setting will allow palliative care, comfort, allow him to go naturally on his terms (or at least his body's) and keep him comfortable as well. He understands and told me that he and my mother had discussed all this prior, I often wondered how much of this type of conversation he comprehended. I know that sometimes he can tell a story that seems very believable, and then in a split second that lucidness is gone and he is off on some other sort of tangent or tall tale. Other care people also saw this in the last 48 hours and stated "dementia. " I will do what needs to be done to make sure that his final days are as comfortable as possible, but see no real reason to prolong the ultimate outcome by allowing costly, and non-useful tests on a man that can not be fixed and for the monetary gain of the healthcare system. I believe in helping ourselves die with dignity, we do it for our animals, why can we not do it for our elderly, critically ill, fatal diseases without being negligent about it, or making it sound like a horrible thing?? I certainly hope that when I am done with my fight, and I have nothing left to give, that someone helps me to pass over to the other side with a little dignity and comfortably.
That is my soap box for tonight .... Hillary and I have done all we can do on our own for today. God willing, tomorrow is another day, and we will tackle what happens then .... then.
Sweets dreams all my angels ....
Peace and Light
et
Okay ... well, it is 8:00PM, I left the house at 6:30 this morning. I have been to the hospital twice today to see my dad and talk with the doctors, they located my camera in NV and will be mailing that back to me, and .... I worked my 8 plus hours .... very chaotic given what was there, and what came my way, in regard to not only work, but attitudes for something I didn't do as I was not even there last week. Just sort of took it all in stride and tried to deal with it all as it seemed to hit me. I still have some work to do here to drop off at one facility tomorrow before I head back to my office to deal with my work.
No call from the transplant nurse today. I hope that one more day will get me my call, and nothing is or has come back as non-qualifying. Will keep that special thought and prayer in the back of my mind for tomorrow.
Dad update - Work up tests came to the same conclusion that was made back in 11/08. He is not a surgical candidate. They will not operate due to the fact that his kidney function in now shot, his heart is 99% blocked, his carotids are 70% blocked on both sides, he had no viable leg veins for harvesting on for bypass, and would no doubt either die on the table, or end up on a ventilator. He does not want that as he feels that is not life. I give him credit for that. He has also developed some sort of internal bleed as his blood numbers are dropping. As I was getting ready to leave at lunch time I/we were approached by a case manager who provided info and applications for long-term care, tonight, I addressed this as well as a hospice option. Dad feels that he will think about it, but I do believe, as he verbalized it to me that he is going to die. :( I just can't believe, and am still not positive that he is comprehending all of it, that he is (perhaps in a brief lucid thought process, that he is aware of the severity of the situation given that he told my cousin Nancy that he was going home in two days. So in the morning I will see how he responded to the transfusion. He understands that the hospital's job is to keep him alive, period. A nursing home will do pretty much the same. A hospice setting will allow palliative care, comfort, allow him to go naturally on his terms (or at least his body's) and keep him comfortable as well. He understands and told me that he and my mother had discussed all this prior, I often wondered how much of this type of conversation he comprehended. I know that sometimes he can tell a story that seems very believable, and then in a split second that lucidness is gone and he is off on some other sort of tangent or tall tale. Other care people also saw this in the last 48 hours and stated "dementia. " I will do what needs to be done to make sure that his final days are as comfortable as possible, but see no real reason to prolong the ultimate outcome by allowing costly, and non-useful tests on a man that can not be fixed and for the monetary gain of the healthcare system. I believe in helping ourselves die with dignity, we do it for our animals, why can we not do it for our elderly, critically ill, fatal diseases without being negligent about it, or making it sound like a horrible thing?? I certainly hope that when I am done with my fight, and I have nothing left to give, that someone helps me to pass over to the other side with a little dignity and comfortably.
That is my soap box for tonight .... Hillary and I have done all we can do on our own for today. God willing, tomorrow is another day, and we will tackle what happens then .... then.
Sweets dreams all my angels ....
Peace and Light
et
Sunday, March 14, 2010
I'm home
Hi Everyone!!
Arrived home yesterday about 1 ... Deb's husband Tim came and picked her up at my place which was way cool as I was wiped. Got all my bags in, reconnected with Maggie, started the wash so I could prep for work tomorrow, etc. I spoke with a couple of people upon my arrival and attempted to connect with my father to let him know I arrived safely and that I brought him some salt water taffy only to discover that he did not answer his phone. After a couple of hours, I tried again, then worry set in. I called and checked with my cousin Nancy and her friend Brian and they said they had not seen or spoken with him. I let another hour go by. Called again, no answer, threw Maggie in the car and headed to his place. Upon arrival we found the door locked, blinds open, looking like he had been in there, but no where to be seen. I didn't have a key to get in and Hillary was working. I went to the hospital, got Hillary's key and returned very unsure of what I may find. I was worried and pissed at the same time knowing that he had asked to be taken to the casino today with Hilly. Anyway .... got in ... no dad. Maggie was sniffing all over as if something was amiss. Anyway ... It seemed as though he had just gone out ... but I was questionable as the kitchen light was still on and his jackets were still hanging on the chair. I had Hillary check with the ER who had told her he was not there. Apparently, however, he was there and had been rushed to the cath lab and then admitted to CICU where he remained until this morning when I finally got a call from a nurse stating that he had called EMS yesterday for crushing chest pain. He is now critical but stable and being kept comfortable until a consult tomorrow to determine if now they can operate. Not sure why as in November 2008 he was deemed an unviable for surgery. He has known cardiovascular disease, and has been on the decline since prior to my mother's passing. I know you have heard me complain about the care of this man in recent months being noncompliant with his meds and still smoking and eating crap in my opinion. So I sort of gave up arguing with him as he is a big boy and capable of making his own call.
Hillary and I had a chat with him prior to me taking Hillary home earlier and he stated that he and my mom had discussed the matters at hand today, and he seemed fairly clear on what was going on in that aspect. So .... I guess ... tomorrow, Hillary will be working on the 4th floor and readily available to meet with the doctors should they present and not give me enough warning to get to YRMC with enough time. I will have some flexibility this week as I have to travel between campuses to cover for the other coder who is on vacation.
Anyway ... I am home.
My trip to UCSF went totally and completely without snag!!!! I was thrilled, they were thrilled and totally enthusiastic about me participating in this trial. With only 8 people taking place in SF I am holding out hope my tests pass the smell test. If they do, I will be required to do 30 days of logs at 3 levels of testing. All requirements for the trial via NIH protocol. If and when those are completed and data entered into the data base, I will be placed on the list. Then ... it is wait. Deb made comment that at the rate they drive in SF and that most donors were/are local that they must get a donor a day and my wait should be fairly short.
Below is a photo that we had taken on the Golden Gate Bridge the day after my discharge ( I think). I took in so much information and so many sight stimulation that I am not sure I remember it all. Certain things .... LMAO .... will be permanently burnt into my brain. If you get the chance, check out FB page of Deborah Schultz and her SF photo album. she posted many photos from our sight seeing adventures, as well as a few very unflattering photos of myself .... Gee .... Thanks Deb-Deb!! We had a wonderful week, lots of laughing, in spite of the business at hand. I hope to have some good news in that respect in the next day or two. As for my dad, only God knows at this point. He seems to have a good hour, then a bad hour, and having done this many times before, know that means nothing in the scheme of things.
(The photo went up above) I really don't like laptops.
talk later, and again, thank you for the continued support and prayers!!
Peace and Light
et
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