Guest guest Posted October 6, 2007 Report Share Posted October 6, 2007 -Hi Alywin, I guess things are just the way they should be in that " Mommy " figure dept. Who knows if we could take that either! We would likely trade one bad thing for just another! LMAO!! To update you, I went to the surgeon yesterday and I have a severe case of spinal stenosis. I have it in the area below and above the titanium and it explains my falling, numbness,added pain, and one I haven't mentioned here was " urine leakage " . He is very concerned about the problem with bladder as it is indicative of the severity and need for surgery but when do you stop and say ....no more?! I could have the surgery, it be the last straw with this DD and be more likely for infection because of my ammunity or even worse problems with sedation because of my heart. After all is said and done, the report stated it is a " degenerative disease " in progression. I could in 12 months be right back where I am today. I don't mean to sound depressing but I've had ENOUGH! No more poking, prodding and being in a level of pain that I cry out to Jesus! I will take my chances where I am now. On a good note, I am getting a Standard Poodle and training her for Assist. I've done my homework on the breed specific to this type of training and no shedding or dander to worry about. Yes she will be groomed and kept short cept for a girly doo or bow here and there lol but I finally got the word today that she is mine. I won't do it alone but will take instruction from my Friend with ME and Groomer that also has a standard poodle assist named athan. He is awsome! Well, I will close now on a good note. I hope your hanging in there too! God Bless yah! XXOO (by the way, those arn't the symbols I was talking about) Sometimes in your text, just before a word there is a like half circle and two lines through it or some other wierd symbols mixed up in your letters that I wondered about. Bye! Huggz! Going back to my name! **if it aint broke, don't fix it!** -- In CFAlliance , " J. Catchpole " wrote: > > 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2007 Report Share Posted October 6, 2007 --Hi Sandrea, I hear you about the " friends " but you know what? I question that it's because we are ill that it happens. I think in this day and age where both parents are forced to work full time plus to make ends meet, their own children fall by the wayside much less any " Friends " getting time from them. It's a sign of the times I think. Just because the world of life has halted to a crawl with us doesn't mean it has for them. I wish I could send someone your way hun! Love you! - In CFAlliance , " 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. 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 7, 2007 Report Share Posted October 7, 2007 It is too sad how this disease seperates us from the outside world.......thank God for the friends we make here - the friends who stand by us, understand us and have big soft shoulders and tender ears to listen with. You will always have a friend in me XO STL Jane " J. Catchpole " wrote: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2007 Report Share Posted October 7, 2007 Hi , I am so sorry that the news was not good…but better to know than not to know what is going on. To me that’s always a comfort in a strange way. I certainly think that surgery is a risky business for PWME and, as you say, with the cardiac issues as well and the fact that it is on the march anyway. I have decided that I would not ever have surgery again. I am interested that a lot of folks here have started talking about their arthritis and spinal issues – wonder how much of that goes with ME over time…an unexamined area I think. But it is my perception with inflammatory disease in general that a lot of us end up with those kinds of issues. (I have had urinary issues as well dear, I don’t have any stenosis though). So the most important thing is pain/symptom management and I hope the dox have some good solutions for you in that department. That’s great about the dog!!! Sounds like you have chosen well and that you have good support for the process…a friend of mine just got a golden doodle – a mix of golden lab and poodle. I hope that you will be very happy with her! Alas, I could not even keep up with darling little Seven, the Papillion…the information said they were good disability dogs…but he was totally high stimulation/activity needs and I’m just the opposite. The good news is that a dear friend had totally fallen in love with him, and so has taken him on. She lives in a big house in the city with 9 adults who are doting on him and he gets to go all over with Geri! She had been looking for the perfect dog for 4 years, and Papillions especially…has lots of experience with toy dogs etc. We realized that he went on to her in a lot better shape than he came to me in…I did lotsa good love and training rehab with him, and he needed that! He is very happy. I love and miss him, but not the part about trying to keep up with a little ping pong ball! I’m very relieved that there was a perfect place for him, or I could not have let him go. I went through a lot of heartache but all’s well that ends well. I guess it will just be my darling old Rubydog and I…we both move at the same speed LOL! I think those weird symbols are a font thing…I don’t type them, but sometimes they show up in my emails…go figure? Anyway my dear I am sad about your back but it’s good that you made your decision and can be at peace with it. XOX Aylwin _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of Sent: Saturday, October 06, 2007 3:26 PM To: CFAlliance Subject: Re: How is Sandrea Doing?? -Hi Alywin, I guess things are just the way they should be in that " Mommy " figure dept. Who knows if we could take that either! We would likely trade one bad thing for just another! LMAO!! To update you, I went to the surgeon yesterday and I have a severe case of spinal stenosis. I have it in the area below and above the titanium and it explains my falling, numbness,added pain, and one I haven't mentioned here was " urine leakage " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2007 Report Share Posted October 7, 2007 Hi All, well I had a nice little unexpected social offer…it’s our Canadian Thanksgiving this weekend and nothing was happening because I could not gather my lot together because of work schedules etc. But a friend I hardly ever see, called and said she and her partner were going to cook and bring over thanksgiving dinner tomorrow! Isn’t that nice? I get too overstimulated (=brain crash) in larger groups but this will just be the three of us. And they will leave when I get tired! I’m quite socially starved too these days so I am looking forward to this. Turns out that my son and his girlfriend are going away for Xmas, so we have all committed to come together and have a family Turkey day between now and then. We just have to find a time that works between work shifts and ferry schedules! This is always way too much for me, but hey, they are my family and that’s all there is to it. Tc All, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 I can surely understand how hard much you will miss your friend when she leaves. But the great thing is that you reconnected with her and perhaps now you can talk on the phone and keep up your relationship and then maybe she will come back and visit at some point. I think your idea of reconnecting with some friends is a good one and I hope that it works out well. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Well, I think there is something to that. But I also think that people prioritize what matters to them and really good friends want to make time for their friends. At least that is the way I have always felt toward my friends. I guess not everyone feels like that. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Aw , That is distressing about your spinal stenosis stuff. I can understand though that at some point you have to say enough is enough and consider what the end benefit will be. What I wonder is what you can do to keep your condition tolerable without having the surgery. The bladder stuff you can't really do much about besides moving to depends or something like that I guess. But as far as the other symptoms and falling down and such, have you an electric wheelchair to get out and about in and maybe use in your house. Or is there some other way to keep yourself safe as the disease progresses. I realize the assistance dog can help with balance and such. I am so happy you have learned the dog is yours. I grew up with only poodles in the house due to allergies and they are very smart loving dogs. And they tend to live a good amount of time. I will be interested in hearing about the training process and what the dog will be able to help you with etc. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Morning Jane, yes, I am feeling almost cloistered these days…nunlike…(no I’m not Catholic!). I have always been ½ hermit and ½ super-social…so the hermit half is doing fine LOL…and it’s true, you and others in this group are as much my friends as any around here…and you lot understand! Thank you dear. Aylwin xox _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of Jane Sent: Sunday, October 07, 2007 3:59 AM To: CFAlliance Subject: Re: How is Sandrea Doing?? It is too sad how this disease seperates us from the outside world.......-thank God for the friends we make here - the friends who stand by us, understand us and have big soft shoulders and tender ears to listen with. You will always have a friend in me XO STL Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Hi Sandrea, are you answering me? I try to have the charitable view, because so few friends have stuck by me at all. I think that they have good intentions, but the gap between their lifestyles and my own is so great, and growing greater by the day. These days I have more in common with you all than my healthy friends, sad to say. TC, Aylwin xo _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of Sandrea Kornblum Sent: Tuesday, October 09, 2007 6:47 AM To: CFAlliance Subject: Re: How is Sandrea Doing?? Well, I think there is something to that. But I also think that people prioritize what matters to them and really good friends want to make time for their friends. At least that is the way I have always felt toward my friends. I guess not everyone feels like that. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 I am so happy you are getting to have a holiday dinner and have some socialization. I agree with you it is so necessary and can really perk us up quite a lot emotionally even if it wrecks havoc physically. If you can balance it so when you need to have them leave they do then that is all the better. What does Thanksgiving dinner consist of there? Here it is turkey, stuffing, cranberry sauce, sweet potatoes pumpkin pie. Can't remember what else. AT least that is traditional, some folks have their own traditions. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Sandrea, I could not have said it better my dear. Most of us suffering from this DD have yet another thing in common and it's always being the one that kept old friendships thriving. I have always made the phone call and trips or they would never happen, I'm sure of that! Well, I just don't have it in me anymore and I've moved from the state so...other than knowing a few of my neighbors and Mail Master because I have to pick up my mail daily, I am pretty much alone even though my hubby is here too but works alot or is sleeping. If I had one wish, it would be that we lived closer together so that on a good day, I could do something nice for my special friends! XXOO huggles! > > Well, I think there is something to that. But I also think that people > prioritize what matters to them and really good friends want to make > time for their friends. At least that is the way I have always felt > toward my friends. I guess not everyone feels like that. > Sandrea > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 I've heard of communities trying to start of for folks like us with various types of support available and all. I think it would be nice to live somewhere like that where we would be surrounded by folks like us and also have assistance and good care. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hi Sandrea, yes, we have the same kind of dinner…OK the vegetarians don’t LOL, but that is the traditional dinner more or less. Sadly, my friends came down with sore throats and fevers, so we had to rebook for later. Oh well…Now my daughter (24 yrs. old) is here for a visit, so delightful but a burnout too fer sure. TC, Aylwin xox _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of Sandrea Kornblum Sent: Tuesday, October 09, 2007 8:50 PM To: CFAlliance Subject: Re: How is Sandrea Doing?? I am so happy you are getting to have a holiday dinner and have some socialization. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Yes Aylwin I was answering you. AT least I think so. I am thinking so well at the moment. Did I offend you somehow? I was trying to say that really good friends stand by their friends regardless of the circumstances. I do find I have more in common with members of this group than outside friends at the moment, but I think that I try to stand by my friends whatever is going on and however they are and I guess am saddened and hurt when I don't get the same treatment back. If I can be caring and supportive as sick as I am, why can't others offer me the same. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 Yes Sandrea, I am really happy that we reconnected after these last few years. It was the first time since I was 5 that we were EVER out of touch. I have vowed that I will FINALLY go down and visit her in Florida! I always wanted to, but financially, we just never could. I have invited 4 other couples over for tomorrow night, to just hang out, maybe play some games or cards or something. I figure, if I'm not really up for it,I can curl up in a chair close by and just listen - it's still nice to have friendly faces around, and at least the sound of others having fun will be a lovely break from staring at the TV. Fortunately, I don't feel the need to 'hostess' if I'm not able you know? They all know how this dd works by now!!! Thanks and take good care, ok? You've got a lot going on right now and you're in my prayers.......... STL Jane Sandrea Kornblum wrote: I can surely understand how hard much you will miss your friend when she leaves. But the great thing is that you reconnected with her and perhaps now you can talk on the phone and keep up your relationship and then maybe she will come back and visit at some point. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 Jane, Sounds like a lot of fun. Hope you enjoy yourself tremendously. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2007 Report Share Posted October 13, 2007 Hi Sandrea, no I wasn’t offended! I just get confused sometimes ‘cuz I can’t remember what I write! I was just suggesting that you put “Hi Aylwin” or whatever at the top of your replies for this old brain fogged grrl! I agree 100% with what you are saying! TC xox Aylwin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Thanks Sandrea - to show support and caring, especially with all you are going thru, means a lot to me. We did have a nice time, I paid for it on Sunday, but it was well worth it! You are in my thoughts and prayers - I wish you much peace and strength. STL Jane Sandrea Kornblum wrote: Jane, Sounds like a lot of fun. Hope you enjoy yourself tremendously. Sandrea Quote Link to comment Share on other sites More sharing options...
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