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
Sunday, April 25, 2010
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
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