Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Hey Aylwin - No, I didn't know that was common for MS patients, but yes, I have been tested and they have confirmed no MS. How are things going with you hon? Does it take a while for you to 'even out' with this weather change? Take good care, STL Jane " J. Catchpole " wrote: Hi Jane, you know, people with MS can't stand the heat. Have you been checked for that? Oh, it's all such a mystery anyway. Anyway I'm glad that you are picking up! TC, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Hey Aylwin - No, I didn't know that was common for MS patients, but yes, I have been tested and they have confirmed no MS. How are things going with you hon? Does it take a while for you to 'even out' with this weather change? Take good care, STL Jane " J. Catchpole " wrote: Hi Jane, you know, people with MS can't stand the heat. Have you been checked for that? Oh, it's all such a mystery anyway. Anyway I'm glad that you are picking up! TC, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Morning Jane, well I never know if I will “even out” as you say, or if the shift is a harbinger of the kind of winter I’m gonna have…this disease is sooo unpredictable! I am definitely having a harder time now, plus all the pain stuff (arthritic/inflammatory) is ramping up merrily <sigh>. Just gotta ride the roller coaster hey? At least this year I am undergoing some kind of diagnostic process, even though the docs involved have no clue about ME <BIG sigh>. We’ll see about the neurologist. Also this year for the first time, I have a caregiver in place for helping with housework, shopping etc. a few hours a week. How goes the good patch for you? Enjoy it hon! TC, Aylwin xox _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of Jane Sent: Tuesday, September 25, 2007 3:05 PM To: CFAlliance Subject: RE: How is Sandrea Doing?? Hey Aylwin - No, I didn't know that was common for MS patients, but yes, I have been tested and they have confirmed no MS. How are things going with you hon? Does it take a while for you to 'even out' with this weather change? Take good care, STL Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Morning Jane, well I never know if I will “even out” as you say, or if the shift is a harbinger of the kind of winter I’m gonna have…this disease is sooo unpredictable! I am definitely having a harder time now, plus all the pain stuff (arthritic/inflammatory) is ramping up merrily <sigh>. Just gotta ride the roller coaster hey? At least this year I am undergoing some kind of diagnostic process, even though the docs involved have no clue about ME <BIG sigh>. We’ll see about the neurologist. Also this year for the first time, I have a caregiver in place for helping with housework, shopping etc. a few hours a week. How goes the good patch for you? Enjoy it hon! TC, Aylwin xox _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of Jane Sent: Tuesday, September 25, 2007 3:05 PM To: CFAlliance Subject: RE: How is Sandrea Doing?? Hey Aylwin - No, I didn't know that was common for MS patients, but yes, I have been tested and they have confirmed no MS. How are things going with you hon? Does it take a while for you to 'even out' with this weather change? Take good care, STL Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Try to avoid pine unless it's been dried properly or it smokes. Take care of you. Big gentle huggles. Love ya, Di J. Catchpole wrote: > Hi Sandrea, Well, last year I had troubles coping with the wood. So, this > year, the person I have coming to help me (paid caregiver who does what I > need – housework, shopping, whatever) is going to load up the inside woodbox > (right next to the stove) with appropriate sized pieces and lots of kindling > every week. I’m not gonna chop or haul a thing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Try to avoid pine unless it's been dried properly or it smokes. Take care of you. Big gentle huggles. Love ya, Di J. Catchpole wrote: > Hi Sandrea, Well, last year I had troubles coping with the wood. So, this > year, the person I have coming to help me (paid caregiver who does what I > need – housework, shopping, whatever) is going to load up the inside woodbox > (right next to the stove) with appropriate sized pieces and lots of kindling > every week. I’m not gonna chop or haul a thing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi Aylwin, I think there is a lot of truth in what you say about how hard it was to be at the event. I was just talking to my therapist today about feeling disconnected from the others although I was there and talking etc. And I do think that I was trying so hard to not show that I was having any sort of health issues and to be " normal " and that was a true struggle because I was so totally burned out before I even got there. I think that it would have been easier to have someone I could relate to more. But, I also think that some of it is simply because I do not have the best social skills or self esteem. It is something I work on when I can, but having this illness makes it much harder to do so in a natural way. I truly am glad that I went but I guess disappointed at how totally hard it was and that got in the way big time. Still, if I hadn't gone I would have been very distressed because it is the only fun thing I have gotten to do in years and the only " vacation " I have gotten to have. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi Aylwin, I think there is a lot of truth in what you say about how hard it was to be at the event. I was just talking to my therapist today about feeling disconnected from the others although I was there and talking etc. And I do think that I was trying so hard to not show that I was having any sort of health issues and to be " normal " and that was a true struggle because I was so totally burned out before I even got there. I think that it would have been easier to have someone I could relate to more. But, I also think that some of it is simply because I do not have the best social skills or self esteem. It is something I work on when I can, but having this illness makes it much harder to do so in a natural way. I truly am glad that I went but I guess disappointed at how totally hard it was and that got in the way big time. Still, if I hadn't gone I would have been very distressed because it is the only fun thing I have gotten to do in years and the only " vacation " I have gotten to have. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 All wood should be dried at least a year before being burnt indoors. If not, it will smoke, but also it releases the sap into your chimney. Which if let build up, can cause a fire. I don't have a wood stove, but I do have a fireplace. Vickie " Di ) " wrote: Try to avoid pine unless it's been dried properly or it smokes. Take care of you. Big gentle huggles. Love ya, Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2007 Report Share Posted September 27, 2007 All wood should be dried at least a year before being burnt indoors. If not, it will smoke, but also it releases the sap into your chimney. Which if let build up, can cause a fire. I don't have a wood stove, but I do have a fireplace. Vickie " Di ) " wrote: Try to avoid pine unless it's been dried properly or it smokes. Take care of you. Big gentle huggles. Love ya, Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 Morning Aylwin - I understand the roller coaster ride - UGH! It's wonderful you have a caregiver to help you out some, that must be a Godsend for you? With this move, I've been doing really quite well until the last few days. Since my son will be in town this weekend, we decided to have our housewarming party Saturday. I think my hubby has invited everyone he's ever met (he's very excited about the new house, very proud of if - he's worked very hard to rehab this house and it did turn out beautifully!) Needless to say, having been in here only a couple of weeks, not every picture will be hung nor furniture in every room, but I do what I can and have to just get over all the little stuff I won't get done before the party! For me,that is about the hardest part - NOT having the house picture perfect and being the best little hostess, ya know? But, what is............IS! LOL I have been blessed with a girlfriend who's back in town for the first time in 10 years and she is ALL OVER this housewarming, she bought and sent out invitations, she and her fiancee are coming over today to help prepare the house and bringing large amounts of food for it! Set up tables outside, my gosh, she's renting a tank to set up balloons all around! I think she's into this more than I !!!! I figure, if I can only sit in a chair for the day, that's ok! Anyone who DOESN'T know how bad this gets, will get a good view, right? Maybe they will learn something? LOL Take good care and I hope this is NOT a sign of how difficult the winter will be for you hon. STL Jane " J. Catchpole " wrote: Morning Jane, well I never know if I will “even out” as you say, or if the shift is a harbinger of the kind of winter I’m gonna have…this disease is sooo unpredictable! I am definitely having a harder time now, plus all the pain stuff (arthritic/inflammatory) is ramping up merrily . Just gotta ride the roller coaster hey? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2007 Report Share Posted September 28, 2007 Hi Sandrea, yes, I have had those feelings when trying to be at some event, is why I know the territory! You are out, but paying a heavy price…that no one sees…and if you have social issues it’s that much harder. I’m still glad you went though! Sometimes we just HAVE to try…to be human…to do something normal that we want to do. Good for you for doing it! Try and remember the fun of it more than the struggle…after all, you DID go and you DID have fun! TC, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 Hope the party goes really well and just have a good time and don't worry about what isn't done or what you can't do. It is so great you have a good friend nearby now as friends are so wonderful to have. And it is great that she is involved in the party. Who better to help out than a close friend and more power to her if she is really into it. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Oh Sandrea, she has been a Godsend..........we have been friends since we were 5, but been out of touch the past 8 years (don't really know what happened??) ANYWAY, last December, she called, out of the blue and after a few minutes of conversation, we discovered we BOTH have ME and Fibro!! Can you believe it? She's more the Fibro end and I the ME end, but still? How strange is THAT? The party went well, thanks to her........she came over early, as soon as she heard me on the phone. It was a " bad " day for me, couldn't speak well, function well, certainly couldn't hostess well.........and she said, " I'll hop in the shower and be there in 1/2 an hour " ......God love her, she didn't do her makeup or hair or anything, and she was going to see people she hadn't seen in 10 years or more! She was having a " good " day and came to my rescue. Took care of some pre-cleaning and then took care of everything like cleaning up as the day wore on, taking care of the trash, refilling the bowls of food and washing dishes thru-out the day.......she was amazing! I know I have a true friend in her - other friends may offer to help, but she dropped EVERYTHING to do so, I can never repay her for this.........well, maybe I can???? Because of Sharon, the day was perfect!!!! Sandrea Kornblum wrote: Hope the party goes really well and just have a good time and don't worry about what isn't done or what you can't do. It is so great you have a good friend nearby now as friends are so wonderful to have. And it is great that she is involved in the party. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Quite true Aylwin. I am glad I went and I did have some fun. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Wow that is great... your friend sounds awesome. Maybe on a day that you are having a good day you can do something special for her? That would be cool. Wish I had friends like that. Okay.... just wish I had friends. LOL Huggles! Vickie Jane wrote: Oh Sandrea, she has been a Godsend..........we have been friends since we were 5, but been out of touch the past 8 years (don't really know what happened??) ANYWAY, last December, she called, out of the blue and after a few minutes of conversation, we discovered we BOTH have ME and Fibro!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2007 Report Share Posted October 3, 2007 Exactly Vickie, that's what I'm thinking. She is only in town (since April) to care for her parents. She has put her entire life on hold to do so. When I'm up and about again, I want to take them dinner, a meal my family has made for years that her family just LOVES! As a small way to show her just how much she's done for me! STL Jane vickie englebright wrote: Wow that is great... your friend sounds awesome. Maybe on a day that you are having a good day you can do something special for her? That would be cool. Wish I had friends like that. Okay.... just wish I had friends. LOL Huggles! Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2007 Report Share Posted October 3, 2007 That is so wonderful that your friend was there for you when you needed her. And to be back in touch after all of this time and find out you have much in common as ell. I'm jealous! LOL Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 -I agree with you Sandrea, I have a friend that has this DD and some added problems but has adopted a " Mother " figure so our relationship is not as close as it could be. In other words, she has someone to come in and cook, clean etc should she need it and also has 3 young children. My kids are grown and gone and I to be honest cannot hardly take the over stimulation of her children when she does drop by. Since I moved to OHIO from MICHIGAN, My support group/friends were left behind. I really don't have anyone either. NOt sure if that is a blessing or a curse yet but it's what it is for now. God Bless, -- In CFAlliance , vickie englebright wrote: > > Wow that is great... your friend sounds awesome. Maybe on a day that you are having a good day you can do something special for her? That would be cool. Wish I had friends like that. Okay.... just wish I had friends. LOL > Huggles! > Vickie > > Jane wrote: > Oh Sandrea, she has been a Godsend..........we have been friends since we were 5, but been out of touch the past 8 years (don't really know what happened??) ANYWAY, last December, she called, out of the blue and after a few minutes of conversation, we discovered we BOTH have ME and Fibro!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 Hi Dutchie/ Dear, wouldn’t it be loverly if we all had a mommy type nearby to help out with things!! I can hardly take kids these dats either. Just toasts me out…after I moved, a friend came by with her 5 yr. old (I’ve known since he was born and love him lots) to help unpack…and he did a big brat display – it just toasted me out for days! Oh well, no grandkids, so no worries for awhile anyway…’ve lived in the same place for over 9 yrs. and I’ve just LOST most of my friends…the very few who remain are my angels though! It’s actually far easier for me to interact this way as it takes the least energy and can be done at will, unlike a phone call, or a visit. Honestly I’m not often up for visits anyway, as much as I wish it were different. Anyway I do hope that you’re picking up a bit dear. XOX Aylwin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2007 Report Share Posted October 5, 2007 It was a VERY strange coincidence. During our first phone conversation in all those years, she talked quite a bit about things going on with her and then asked about me, what I was doing now, etc. I started by saying I lost my job, due to some medical issues, not really wanting to go into all that in our first conversation. Telling her I had to file for disability and then WHAM! She asks me " do you have CFS? " I about fell off the chair....of ALL the medical problems you could have, WHY on earth did she pick that one out of the sky, ya know? That's when she said, " I have it too, that and FM " ............I couldn't believe my ears!!! I had called her over the years, but she never returned my calls. I had no idea why this was happening, so I quit calling. We had been best friends for 40 years, she was my maid of honor, and now, nothing! I didn't understand - when I told her that I had called, she said she was living with a guy who was very possesive at that time, and he wouldn't give her messages! What a goof. All she said was, " something told me to call you..........I just had this nagging that I should call - I guess now we know why " It is wonderful to have her back in my life again. I'm sorry she is in town for such difficulty with her parents and such, but I'm SO grateful she's back for my own selfish reasons. She has someone to vent her frustrations to and for that, I am thankful I can be there for her! Sandrea Kornblum wrote: That is so wonderful that your friend was there for you when you needed her. And to be back in touch after all of this time and find out you have much in common as ell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2007 Report Share Posted October 5, 2007 Well, I truly wish I had some friends around here both for assistance and for friendship. I have a couple of friends but rarely see them or hear from them, so I don't really feel like we are friends much any longer. I know that folks can be too much to deal with sometimes, but I think I would like to give it a try and have the opportunity to turn folks down rather than not have anyone at all. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2007 Report Share Posted October 5, 2007 Yes, my last couple of local friends are floating away too…not from lack of love, but just the healthy busy lives they lead. We are miles apart in lifestyle, and have less and less in common the sicker I get. All I can say is come for tea, as I can’t really go anywhere or have a party or whatever. I try to hold up my end by calling or emailing them, but too often these days I’m the thing they let slide <sigh>, and sometimes I don’t even hear back. Ah well. I’m your friend, and you are mine. These kinds of friendships (maintained by phone/email) are much more sustainable for me anyway. Still, it’s a lonely life. XO Aylwin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2007 Report Share Posted October 5, 2007 It is great to have support from this site. I too lost most of my friends now. As I have to live day by day. Doesn't work with folks who have to put you on their monthly planner. I used to do all the work for the friendships. Going to their houses, traveling etc.... now that I can't no one recipercates to include family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2007 Report Share Posted October 6, 2007 I know I am very fortunate to have Sharon, my party-saving friend, in town right now. But as winter is settling in, I am sure she will be moving back to her home in Florida, taking her parents with her soon. I had forgotten how nice it is for someone to have your back and I will miss her terribly when she goes, even though we don't get to see each other NEAR as much as we would both like - she is so busy taking care of her parents, I don't know how she is doing it? I am going to make an effort to re-connect with some of my friends that live close by, just to do a spur of the moment game night or something! They know I cannot be the planner I always was and they understand it will be quite spontaneous. I think it helps us ALL to socialize once in a while. Is there an old co-worker, neighbor or one of your distancing friends you can call over just to watch a movie or order pizza or something? Sandrea Kornblum wrote: Well, I truly wish I had some friends around here both for assistance and for friendship. I have a couple of friends but rarely see them or hear from them, so I don't really feel like we are friends much any longer. Quote Link to comment Share on other sites More sharing options...
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