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
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