Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Thanks Sandrea, actually, the reunion went much better than expected. I was in full swing, I tell ya. They all got quite a show! LOL..........I was stumbling around, incoherent speech, having to be escorted to the bathroom by my lovely daughter, who so willingly offers a hand without being asked......she just KNOWS when I need it!!!! My younger son (17) also stopped and waited for me, put out a strong arm for my support and even carried my purse out when we left (again, without me even asking - he just instinctively grabbed it!) God bless em! I hadn't been to this annual event in 3-4 years, so, it was a surprise for extended family members to see me in this new way! I have always been very energetic, talk a mile a minute, smiling, laughing, joking......and was a bit nervous to see the reactions I might get - but was pleasantly surprised by all the love and support people showed me. I also get speech problems when I really push myself, and Sunday was again, full blown. But everyone was very patient in letting me stutter and mumble my way thru a sentence, head jerking the whole time! It's funny, I kinda feel like I 'came out of the closet' with this disease. Part of me was embarrassed to be seen like that, yet part of me knows that this is just another way to get the word out. People NEED to see us like this, to wake them up and realize, this is neither fake nor easy to deal with. This disease CHANGES LIVES COMPLETELY! I'm glad I went..............thanks for asking. STL Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 You know Aylwin, it was good for people to see it - I guess my pride gets in the way more than I'd like to THINK it does.........it went VERY well and I'm really glad I went. Thanks for your support and encouragement hon, STL Jane Aylwin wrote: Jane, I wish you luck with this. Be a proud survivor of this! You deserve a medal - we all do LOL! Nothing to be ashamed of, and don't let anyone put it on you. It's good for people to see the reality. Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Way to go Jane!!! Sounds to me (from your post about it) like a true personal triumph. Love, Aylwin xoxox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 That is wonderful Jane. I know it must be hard to let folks see you in your condition, but a relief to know that your family understands now what you are like and can be supportive. You're right, it is like coming out. LOL. You sound like you've got fantastic kids, how lucky you are. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Thanks - those kids sure can come thru when I least expect them to. And you're right, it is nice to be out in the open about it. It shows people that " NO - it is NOT just being tired " the way most people think! One small step................lol Sandrea Kornblum wrote: That is wonderful Jane. I know it must be hard to let folks see you in your condition, but a relief to know that your family understands now what you are like and can be supportive. You're right, it is like coming out. LOL. You sound like you've got fantastic kids, how lucky you are. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Thank you...........I feel really good about it ! STL jane Aylwin wrote: Way to go Jane!!! Sounds to me (from your post about it) like a true personal triumph. Love, Aylwin xoxox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Yes Jane I have been diagnosed with ME. I was goin to mention to those that think they are lieing by using ME as their diagnosis. Just say you have Myagic Encepliopathy and you won't be lieing. the mylitis indicated the Neuro connection or I've been told. Also, I am sorry that I'm a complete nut but I did recently read that there are tests to determine ME without question. There are three such tests and none are evasive. It was in something posted here on thread. God Bless, > SO you have a doc, here in the states who actually diagnosed you with ME? Hmmmmmmmmmmm............I need to re-read ME symptoms again..........off I go! > Sorry to hear you are in the hole, please take good care until you can peek you're head out again, my prayers and thoughts are with you hun.....CYA soon! > Much Love, > STL Jane > > wrote: Jane, > > The first main symptom I knew was Fatigue and yet I now have the > neurological symptoms of ME of which I was diagnosed. I wonder if in > many cases...one leads to the other? Food for thought anyway. > > /Duthchie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Yes Jane I have been diagnosed with ME. I was goin to mention to those that think they are lieing by using ME as their diagnosis. Just say you have Myagic Encepliopathy and you won't be lieing. the mylitis indicated the Neuro connection or I've been told. Also, I am sorry that I'm a complete nut but I did recently read that there are tests to determine ME without question. There are three such tests and none are evasive. It was in something posted here on thread. God Bless, > SO you have a doc, here in the states who actually diagnosed you with ME? Hmmmmmmmmmmm............I need to re-read ME symptoms again..........off I go! > Sorry to hear you are in the hole, please take good care until you can peek you're head out again, my prayers and thoughts are with you hun.....CYA soon! > Much Love, > STL Jane > > wrote: Jane, > > The first main symptom I knew was Fatigue and yet I now have the > neurological symptoms of ME of which I was diagnosed. I wonder if in > many cases...one leads to the other? Food for thought anyway. > > /Duthchie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Your not kidding Aylwin, I have the involentary movements that I guess are mild siezures. I always thought siezures where when you did not know what happend or were not aware at the time what was happening. At either rate, we do learn as we progress and I knew I met a new level in this disease the past few weeks. Just part of life I guess. Hope your hangin in there > > Hi , you know, the neuro stuff got a lot worse for me later on, not > in the first round (18 mo), second whack, 6 months later and much worse, > seizures, you name it.if there's one thing you can say about this disease, > it's full of surprises, changes all the time, you never know where you are > from one moment to the next. XOX Aylwin xox > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Your not kidding Aylwin, I have the involentary movements that I guess are mild siezures. I always thought siezures where when you did not know what happend or were not aware at the time what was happening. At either rate, we do learn as we progress and I knew I met a new level in this disease the past few weeks. Just part of life I guess. Hope your hangin in there > > Hi , you know, the neuro stuff got a lot worse for me later on, not > in the first round (18 mo), second whack, 6 months later and much worse, > seizures, you name it.if there's one thing you can say about this disease, > it's full of surprises, changes all the time, you never know where you are > from one moment to the next. XOX Aylwin xox > Quote Link to comment Share on other sites More sharing options...
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