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What a roller coaster ride! I think I'd be looking for a med center that specializes in this sort of thing. Maybe Mayo Clinic or Johns Hopkins or MD Anderson. Often these places know treatments that are not generally available and how to get signed on for them. It sounds like you have the time to research it and talk to people, but I would definitely get a second opinion in a place that has more extensive experience in this specific problem. I know it sounds scary to travel or to start over, but I have seen that be the answer.
I'm not sure where you are, but maybe there is a major med center not too terribly far from you. I'm praying that you connect with the right people quickly. I don't see how he can live a normal life the way it is. I would not accept that without a fight.
I am so sorry for all of the stress and turmoil that you are going through. I know how the medical system can make you feel vulnerable and helpless, and afraid to demand answers. I have been there with a sick child. I will never allow myself to surrender control again. (My story had a happy ending, but was terrible to live through). I will always seek medical professionals who will respect my right to make knowledgeable choices, and will help me do that. Most doctors, in this type of serious condition, are happy to have you seek a second opinion.
Keep "talking" to us! We care!
Joy
On another note ENJOY BRAZIL...can you smuggle me in your suitcase I sure could use a vacation

"To accomplish great things, we must not only act, but also dream, not only plan, but also believe" ----"Anatole France"
"Joyously grasp the ties that bind you, for they lead straight to the heart"---"Wm."
Kimberly...
I had a bad week last week. I went to the dentist for oral surgery a bit over a week ago. For some reason he had a hard time getting the novacaine to numb the area where he wanted to work. I've never had that problem before. He wanted to give up and send me to someone else, but I talked him into waiting and trying again and it finally worked.
I wish I'd counted the shots--I'm guessing 15-20. The work proceeded fine without pain or problems. He guessed that it might take a day for my mouth to wake up. It took an hour and a half. So, where did all that Novacaine go? I suppose into my blood stream. I felt very lightheaded and strange that day, but the odd thing was that apparently it triggered a major depression. I cried for most of 3 days. Everytime the thought came to mind "Why am I so emotional?", I would start crying again. About 4-5 days later I came out of the fog and realized that the last clarity of thought I had had was before the trip to the dentist. It had to be the drugs circulating in my head!
Well, during that bout, I did manage one binge on crackers, where I ate a whole sleeve of ritz crackers. Aside from that I have done a reasonably good (but not perfect) job of sticking to meals only, and eating high protein foods.
I did have one surprise blood sugar/dumping related reaction to a snack. I bought some no-sugar-added "Naked" juice and added it to a cup of low carb vanilla yogurt. I thought that would be a healthy treat. Well, I did not adequately look at the carb count on the juice, and I had a major sleepy reaction for the next hour!
Weight? I think I have lost 2 lbs, but the biggest benefit is that I do not have the sluggish carb-laden feeling I had been living with.
Something else I did for me--I refilled my Vitamin D prescription and started back on them, after letting that lapse for a few months. (Does it bother anyone else to pay $2.50 per pill for a vitamin??? And that is WITH insurance!)
I am on the countdown for my 4 week trip to Brazil. I will try to post to my facebook page, so if you are interested, "friend me" there...
Let me hear how you are doing. This is a safe place, whether you are doing well or not!
Joy
"To accomplish great things, we must not only act, but also dream, not only plan, but also believe" ----"Anatole France"
"Joyously grasp the ties that bind you, for they lead straight to the heart"---"Wm."
Kimberly...
Thee is much truth here Reenie, but we must be careful not to use this as an excuse to throw in the towel. Most of us are perfectionists. If we can't diet perfectly, why try. If we slip up and eat a bite of chocolate, we give up and eat the whole cake (or bag of M&Ms). We may not be able to attain and maintain size 0 status without 100% obsession. That is reality. And that is not a price I am willing to pay. BUT, I can maintain a healthy middle of the road weight by using common sense, and breaking free of unhealthy carb addictions and binging. I can feel good, and feel good about myself. And I can focus the remaining 98% of my attention on living.
Just my take...
Joy
Joy
I can see how that could apply to all of us! I do find in older people (and thus, increasingly, in myself) an attitude of "I'm not going to live forever, so I may as well enjoy today." What is forgotten in that is the reduction in quality of life we may be bringing on ourselves. It is so obviously simple when someone else states it the way your mom did!
I am learning that I can't control anyone else's decisions. Heck, I can't even control mine most of the time. Loving means accepting people the way they are, not how we would have them to be. We can bring up options, but we have to hand over the choices to them, as long as they are competent to choose for themselves, even if they choose foolishly. It is SO hard to do that!
Joy
scene you do not want to have in the store. So just do what you will & keep hope &
praying that she will get it eventually.
Maybe you can start getting her to LOVE herself again & that will change her attitude as well.
Yeah, the only reason I even went to this appt is the State of AZ thought I needed it!!
So to keep them happy I went. Total waste of time in my opinion.