Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Kathy, Welcome to the group, I am also new and in limbo, awaiting a muscle biopsy, have you seen any neurological Dr's or your family physician? for your information, their are over 40 neuromuscular diseases, and it takes time to find out which one. we are here to help. markb --- jstkathy52004 JstKathy5@...> wrote: > > Especially in light of how seriously ill some of you > are...but I > just don't know where else to go. > > I haven't been dx yet...still in limbo... > > It's the fatigue...I used to have it on > weekends...then after > work...now, I can't get past 1pm without thinking to > myself, " I've > got to make it, just a few more hours, just a few > more hours " . > > My legs are like jelly. I went to the store, and > came back. > Couldn't even do my grocery shopping. > > And it's not like I'm sleepy, I'm not. I just lay > around all day > and feel just fine. But as soon as I'm active again > (active being > relative, I mean just doing dishes or starting to > vacume) I feel > like crap all over again. > > I don't know what to say to people when they ask me > what's wrong. I > don't know how to explain to my co-workers while I > look like a truck > hit me. I don't have an *answer*, so it looks like > I'm being 'lazy' > or 'trying to get attention' or any number of things > that go through > peoples heads when someone is 'too tired' to do > anything. > > Maybe I don't have Mito. I keep thinking maybe I > have cancer or > something...something they haven't found yet...What > else would make > me feel like this? The myoclonus is all but gone > thanks to the > Lamictal, so that's a relief. But two years ago I was > going to the > gym 3x a week, dancing once a week, pottery class > once a week, girls- > night every Thursday, you couldn't keep me still! > > Now I'm a shadow. > > And I don't know what to do. I feel alone in this. > > Thank you for letting me vent here. > > ~Kathy~ > > ===== Planet Earth - a subsidiary of Microsoft® we have no bugs in our software, Never!, we do have undocumented added features, that you will find amusing, at no added cost, to you, at this time. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Kathy, Welcome to the group, I am also new and in limbo, awaiting a muscle biopsy, have you seen any neurological Dr's or your family physician? for your information, their are over 40 neuromuscular diseases, and it takes time to find out which one. we are here to help. markb --- jstkathy52004 JstKathy5@...> wrote: > > Especially in light of how seriously ill some of you > are...but I > just don't know where else to go. > > I haven't been dx yet...still in limbo... > > It's the fatigue...I used to have it on > weekends...then after > work...now, I can't get past 1pm without thinking to > myself, " I've > got to make it, just a few more hours, just a few > more hours " . > > My legs are like jelly. I went to the store, and > came back. > Couldn't even do my grocery shopping. > > And it's not like I'm sleepy, I'm not. I just lay > around all day > and feel just fine. But as soon as I'm active again > (active being > relative, I mean just doing dishes or starting to > vacume) I feel > like crap all over again. > > I don't know what to say to people when they ask me > what's wrong. I > don't know how to explain to my co-workers while I > look like a truck > hit me. I don't have an *answer*, so it looks like > I'm being 'lazy' > or 'trying to get attention' or any number of things > that go through > peoples heads when someone is 'too tired' to do > anything. > > Maybe I don't have Mito. I keep thinking maybe I > have cancer or > something...something they haven't found yet...What > else would make > me feel like this? The myoclonus is all but gone > thanks to the > Lamictal, so that's a relief. But two years ago I was > going to the > gym 3x a week, dancing once a week, pottery class > once a week, girls- > night every Thursday, you couldn't keep me still! > > Now I'm a shadow. > > And I don't know what to do. I feel alone in this. > > Thank you for letting me vent here. > > ~Kathy~ > > ===== Planet Earth - a subsidiary of Microsoft® we have no bugs in our software, Never!, we do have undocumented added features, that you will find amusing, at no added cost, to you, at this time. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Hi Kathy, Welcome to our group. It was not to long ago that I was invited to join. I felt kind of funny since I didn't have a diagnosis either. I still don't for that matter. My grandaughter does now however. This week I go in to see Dr. Enns at Stanford. Hopefully he will be able to help. I know the road you are on. It is long lonely and confusing. It has been 15 years for me. I remember feeling the way you are describing. I would look at others and watch what they did and wonder how in the world are they able to do that. You have found a great group of people. We are here to give each other support, information and sometimes a shoulder to cry on. Welcome. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 Kathy I also had to take my son for sensory integration training. It sounds like you are getting the hang of doing what you can in a way that you can. About the diabetes - my blood sugar level goes up when tired or stressed and especially if I have overdone physically. This is backwards from most diabetes where exercise brings it down. It may be that the exercise you are doing is causing the diabetes to flare along with a crash (what we call it when you can't do anything more, no matter how much you want to). laurie > > Reply-To: > Date: Mon, 06 Sep 2004 15:42:44 -0000 > To: > Subject: Re: Don't mean to complain > > Thanks all of you. Thank you, thank you. > > Yes, I know my body, and I'm not lazy. Not in the least. > > And I was/am a single mom too, and had to be super woman 24/7. It > was sensory integration training for my autistic son 2x a week, it > was counseling and tutoring for my other 'special ed' son 2x a week, > it was meeting with UCLA's Autism Project, it was this and that and > this and that (which I know many here can relate too). > > So I guess I'm still in 'super mode' and it just ain't workin'!! > > GREAT suggestions on making accomodations!! Wonderfull! Did my > weeks worth of dishes sitting on a chair. Put some music on, tapped > my feet. I vacumed 'part' of the living room, then sat down and > watch some news on the tv (gonna be verrrrry hot here in southern > calif again today). Then went back and did another part. I sat on > the toilet (small bathroom) and cleaned the sink and counter tops. > And so on.... > > I can't tell you how much better I feel!! Whoo hoo, I'm > an " accomodating " super woman!! > > I'm hoping this will pass. It has in the past, but again, it's > never been this bad for this long. > > Called neuro and left message on Friday about the fatigue and about > my 'speech arrest' (probably the newly diagnosed frontal lobe > epilepsy) so I'm hoping she'll call back tomorrow. > > You guys are the best!! > > One quick question: I'm type II diabetic, and I " ve noticed that my > blood sugar gets totally out of control prior to these episodes. I'm > only on Actos in the morning, but there are times I'm in the 300's > without ANY CHANGE in my diet. I get the 'uh oh' feeling when they > go up because I can almost count on my neuro symptoms flaring up > again. > > Does this happen to any of you that are diabetic? > > ~Kathy~ > > > > > > >>> >>> Medical advice, information, opinions, data and statements > contained herein >>> are not necessarily those of the list moderators. The author of > this e mail is >>> entirely responsible for its content. List members are reminded > of their >>> responsibility to evaluate the content of the postings and > consult with their >>> physicians regarding changes in their own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who > sends one is >>> automatically moderated or removed depending on the severity of > the attack. >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 Kathy I also had to take my son for sensory integration training. It sounds like you are getting the hang of doing what you can in a way that you can. About the diabetes - my blood sugar level goes up when tired or stressed and especially if I have overdone physically. This is backwards from most diabetes where exercise brings it down. It may be that the exercise you are doing is causing the diabetes to flare along with a crash (what we call it when you can't do anything more, no matter how much you want to). laurie > > Reply-To: > Date: Mon, 06 Sep 2004 15:42:44 -0000 > To: > Subject: Re: Don't mean to complain > > Thanks all of you. Thank you, thank you. > > Yes, I know my body, and I'm not lazy. Not in the least. > > And I was/am a single mom too, and had to be super woman 24/7. It > was sensory integration training for my autistic son 2x a week, it > was counseling and tutoring for my other 'special ed' son 2x a week, > it was meeting with UCLA's Autism Project, it was this and that and > this and that (which I know many here can relate too). > > So I guess I'm still in 'super mode' and it just ain't workin'!! > > GREAT suggestions on making accomodations!! Wonderfull! Did my > weeks worth of dishes sitting on a chair. Put some music on, tapped > my feet. I vacumed 'part' of the living room, then sat down and > watch some news on the tv (gonna be verrrrry hot here in southern > calif again today). Then went back and did another part. I sat on > the toilet (small bathroom) and cleaned the sink and counter tops. > And so on.... > > I can't tell you how much better I feel!! Whoo hoo, I'm > an " accomodating " super woman!! > > I'm hoping this will pass. It has in the past, but again, it's > never been this bad for this long. > > Called neuro and left message on Friday about the fatigue and about > my 'speech arrest' (probably the newly diagnosed frontal lobe > epilepsy) so I'm hoping she'll call back tomorrow. > > You guys are the best!! > > One quick question: I'm type II diabetic, and I " ve noticed that my > blood sugar gets totally out of control prior to these episodes. I'm > only on Actos in the morning, but there are times I'm in the 300's > without ANY CHANGE in my diet. I get the 'uh oh' feeling when they > go up because I can almost count on my neuro symptoms flaring up > again. > > Does this happen to any of you that are diabetic? > > ~Kathy~ > > > > > > >>> >>> Medical advice, information, opinions, data and statements > contained herein >>> are not necessarily those of the list moderators. The author of > this e mail is >>> entirely responsible for its content. List members are reminded > of their >>> responsibility to evaluate the content of the postings and > consult with their >>> physicians regarding changes in their own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who > sends one is >>> automatically moderated or removed depending on the severity of > the attack. >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 Kathy I also had to take my son for sensory integration training. It sounds like you are getting the hang of doing what you can in a way that you can. About the diabetes - my blood sugar level goes up when tired or stressed and especially if I have overdone physically. This is backwards from most diabetes where exercise brings it down. It may be that the exercise you are doing is causing the diabetes to flare along with a crash (what we call it when you can't do anything more, no matter how much you want to). laurie > > Reply-To: > Date: Mon, 06 Sep 2004 15:42:44 -0000 > To: > Subject: Re: Don't mean to complain > > Thanks all of you. Thank you, thank you. > > Yes, I know my body, and I'm not lazy. Not in the least. > > And I was/am a single mom too, and had to be super woman 24/7. It > was sensory integration training for my autistic son 2x a week, it > was counseling and tutoring for my other 'special ed' son 2x a week, > it was meeting with UCLA's Autism Project, it was this and that and > this and that (which I know many here can relate too). > > So I guess I'm still in 'super mode' and it just ain't workin'!! > > GREAT suggestions on making accomodations!! Wonderfull! Did my > weeks worth of dishes sitting on a chair. Put some music on, tapped > my feet. I vacumed 'part' of the living room, then sat down and > watch some news on the tv (gonna be verrrrry hot here in southern > calif again today). Then went back and did another part. I sat on > the toilet (small bathroom) and cleaned the sink and counter tops. > And so on.... > > I can't tell you how much better I feel!! Whoo hoo, I'm > an " accomodating " super woman!! > > I'm hoping this will pass. It has in the past, but again, it's > never been this bad for this long. > > Called neuro and left message on Friday about the fatigue and about > my 'speech arrest' (probably the newly diagnosed frontal lobe > epilepsy) so I'm hoping she'll call back tomorrow. > > You guys are the best!! > > One quick question: I'm type II diabetic, and I " ve noticed that my > blood sugar gets totally out of control prior to these episodes. I'm > only on Actos in the morning, but there are times I'm in the 300's > without ANY CHANGE in my diet. I get the 'uh oh' feeling when they > go up because I can almost count on my neuro symptoms flaring up > again. > > Does this happen to any of you that are diabetic? > > ~Kathy~ > > > > > > >>> >>> Medical advice, information, opinions, data and statements > contained herein >>> are not necessarily those of the list moderators. The author of > this e mail is >>> entirely responsible for its content. List members are reminded > of their >>> responsibility to evaluate the content of the postings and > consult with their >>> physicians regarding changes in their own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who > sends one is >>> automatically moderated or removed depending on the severity of > the attack. >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
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