Re: Kim..deep fried Twinkie

[Guest guest]

Ruth

I am so glad that you were able to go to the fair, but some of that food you describe sounds out of this world. How do people come up with this stuff? It does feel so good when you go to something like this and actually get to enjoy and participate while you are there, like old times for awhile. I am genuinely happy you were able to attend and enjoy yourself. God willing you will be able to go again next year.

I understand what you mean by wanting to understand what is at the bottom of everything, causing what is going on with you. I have my ns dx and several other dx's to boot at this point. But still want to understand exactly what is happening and no one can tell me this, explain things to me. This frustrates and upsets me and is one reason that I at times hesitate on certain medications. I dont like treating something that is being presumed or second guessed. Even with my "attacks" there is disagreement and guessing going on - I get sick of it and confused - when I came here and my Dr who I trust and have faith in started questioning my Drs there who I trust and have faith in I just lost all faith in any of them and got very disheartened and upset with all of them bickering in front of me basically. I lost it a little and have withdrawn from them I guess. Its like if you cant pull it together in this serious of a case and stop putting things in the patients hands for crying out loud!!!! I need direction from them. I dont need them telling me well maybe its this or that, we arent sure , then this Dr acting like because they said that they are idiots, and he is superior but he doesnt really give me answers either becuase he doesnt have the right "test results" in front of him but then saying a bunch of Dr talk that is a circle that I can see through and in the end not providing me direction or actual care and relief. It is making me the very very sick patient advocate for myself. i have just lost it and said enough. i cant do it anymore, actually physically i cant. i was running around falling down in seizures and tias everyday doing what they all wanted me to do getting sicker and sicker, trying to tell them so politily that it was all too much for me, then telling them not so nicely, while they were witnessing it in front of them. wella athem, they saw it in front of them, and nothing changed. so i took it in my own hands and put myself in the hospital - my hospital - my bed. where i could rest and take care of myself, which is what i needed.

but back to you and wanting to understand what is happening to you. a dx is absolutely necessary you are right. by the way, i most often have perfectly normal test results. and this has been the case so often. normal blood work. ive had normal mris. ive had normal cts. what are you having that is normal? i had all these normal at the same time while at the same time haveing very very abnormal muscle and nerve biopsies and spinal taps. For me different things have been abnormal and normal together at the same time. But there have been times certainly that the normal things they would look at, blood work for exampt was normal and CT. Sometimes they have to look a little deeper than the average test results I think. I know invasive testing is not done without a good cause though.

I hope that you get some answers soon, I know waiting can seem forever.

Take care,

Kim

NS Moderator

PS. you are right about Germany, they do have the most delicious sweets! we were hoping to go to the chrismas markets in november, but i beleive this is out, there is no way im feeling up to it, even for just a couple days. where did you live in Germany?