Jump to content
RemedySpot.com

Barbara

Rate this topic


Guest guest

Recommended Posts

-- Barbara

I put you on the map. We have 40 people on it.

Let me know if thats works you copying

and pasting it.

Joyce M.

Joyce,

It's Barbara , New York City. But I'd like to access the map. I saw someone else couldn't do so either. I copied and pasted your address for it.

Barbara B.

Link to comment
Share on other sites

  • 2 weeks later...

-- Re: websites info - Joyce

Barbara you know i had no idea what a digest

Was . You don't get any pictures.

Everything comes in a big long line.

The things you get are different then the things we send.

I Didn't have a clue.

The map link i sent didn't look anything like the one

you got. I looked and clicked on it. No Map.

So i went back and clicked on my link and it worked.

What the heck is a digest a different kind of computer.

I still don't understand.

Do a lot of people on the crew have digest.

http://www.geocities.com/joyce5119/ Our_Map.html

See if this works on your regular mail.

You would laugh if i told you want i thought a digest

was. When everyone was complaining about digest

awhile back. I thought they were complaining that i

was writing to long of letters. You know like a Readers

Digest. LoL.

My only secret is that i keep websites in my Documents

For fast reference . i have a computer with lots of

memory so that's not a problem.

Joyce M.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

Link to comment
Share on other sites

  • 1 year later...

-

Sometimes I just think "Oh to heck with it all, I'll just deal with the pain" but then I remember that I can't do that either. It didn't work ! Very frustrated. I just want to go back to work, see the kids, have a paycheck, and get my life back (and maybe be able to eat more than a quarter of a grilled cheese without getting sick). With the Levorphanol I could manage on 4mg four times daily but then the stomach (actually my vestibular system) blew apart with the increase to 6mg. That's why we went back to just the 2mg four times daily and the duragesic patch. I'll be trying this week to move from 75 patch to the 100 patch and hope that the side effects don't worsen otherwise we will make the swtich to injectable oxymorphone next week. We've planned, in any event, for an injection of it next week to see how this rapidly growing older body responds to it. (Oh, #$%, do I really hit 52 this month? How did

that happen?)

SInce I had a drug reaction last week after two days of one-half the normal starting dose of Lamictal, he also started me back on Neurontin (which did nothing at 3600mg a day). Apparently, he wants a "membranous barrier" (what the $%^ is that?!?!) in place because of the myositis so he's now re-starting it but for a different reason. I give up.

Last night, after the other appt., I went to the first night of a group that will meet 4 times for patients at the clinic who have diagnosed with this SAME/myositis thing. It was weird. It seemed like the focus was on ways to improve your pain levels and symptoms without meds....Well, duh. Everyone in the group, myself being the exception, was having to go off narcotics because of the myositis so the focus seemed to be on how much better you are when you don't take meds. Well, DUH again. That's what I had been doing for 13 years and woudl have liked to still be doing but it just wasn't working anymore. So there's all this pep talk stuff going on and they had this guy there who talked about how much better his life was on fewer meds. Well, DUH....Here I am with the same doc trying to get me to go on meds and I'm not exactly doing so well getting the doses to go up so

how is this guy's story helpful? I'll keep going because I made a commitment to myself to go but I will ask my doc about it next week. One big freaking DUH here. BarDUHra (venting....thanks for the moment)KM86@... wrote:

Oh Barbara. I sure hope they come up with some answers for you quickly. I couldn't tolerate the Levorphanol either. Right now, I'm on liquid morphine for breakthrough pain. Other than that it's Ultram. He also has me on Phenergan to help with the nausea. I'm still losing weight, but not as quickly as you. I'm now down 39 lbs---so much for neurontin causing weight gain.

In a message dated 1/3/2005 11:47:54 PM Eastern Standard Time, RSD-CRPSofAmerica writes:

Subject: Re: Re: Another new drug, Lyrica? - GInnyGinny - I know that you were were really hoping for a chance of a trial on remicade. Sorry that it just desn't seem to be in the cards for you right now. Have they run any tests to see whay you might be running the continuous fever? I saw my doc today and, given that I have had so many side effects with the various narcotics that we've tried since Oct., he's talking about possibly going with my learning to give myself injections of oxymorhpone. I'm going to to try to increase the patch again this week and I see how I do with the nausea and constipation before we meet again next week. A very tough decision since I've avoided being on narcotics for the entire time that I've

had RSD and really would rather not be on them now. Something has to give though. Even take the low dosage of levorphanol and a low dose patch, I have trouble keeping food down and have lost over 30 pounds in 2 and a half months. Last week I had a drug reaction to one of the other meds to boot. I won't complain about the weight loss, but this sure isn't the way to do it. Hope you have a decent night. You're right...It's hardly ever simple.

Link to comment
Share on other sites

Barbara,

I can hear how frustrated you are.. I know, because due to a lot of reasons, work being one of them, I had to get off all meds. Some I am allergic to and wish I could take, the others just did not work for me. I can't imagine having to try and go through that again..

BUT, I'm sure that your Drs. will finally find a way for you to get back to work. You'll find something that works for you. Thank God you have such a wonderful doc trying to get you there.

I know that patience is difficult (believe me, I am the queen of impatience!).. but please, try.

Hugs,

Jo

Link to comment
Share on other sites

Tricia - Glad that you're legs are doing better. My Catholic guilt just wouldn't have been able to handle another slam. I really enjoyed the visit too. Bring your Mom more often ! BarbaraTricia Skiba wrote:

Barb - You'll be happy to know that my legs have shrunk to an only slightly abnormal size. Though I would never dream of blaming anything on your stairs (well, maybe those splinters in my butt might be related, but I'm trying not to sweat the small stuff). Edema is wonderful....but then, I can't really complain about it because I know how to make it stop....it's just that I'm not ready to do that yet, especially after yesterday's visit with the neurologist. If more of the same is really all I have in my future, then I can suffer through balloon legs for a few more weeks. Sad to say, but at this point it beats the alternative. Hope you're doing well with all of those cards you're making. Who knows, maybe you have a side business starting? I am gonna lay low today, though.....my favorite show FINALLY starts again tonight, so my TV will come in handy for once. Take care and thanks again for the coffee and chat yesterday.....mom's grateful, too. Poor woman is bored out of h! er

mind. Guess we know how she feels ;) Hugs, TriciaBARBARA TORREY wrote:

Tricia - What are you doing there sitting in front of the computer when you should be keeping those legs up. I'm not gonna wanna see treetrunk innards when they pop, girl.....Plus I just know that you'll blame it on fighting your way up and down the stairs at my house. Booohooo It will all be my fault. Seriously, dear friend, take it easy and give yourself a quiet day tomorrow to hopefully let the leg dust settle. Isn't edema grand? For now, I will leave the goosing out in the yard with the llamas and geese (who miss you and your mom already). BarbaraTricia Skiba wrote:

Dawn - Thanks for the well wishes. Barb's right, I usually do try to read through the emails just to see how everyone is doing (though, lately I've not been quite so great at that.) but with the SAME kicking up something awful right now, by the time I'm done reading my legs resemble tree trunks and I need to put them up before they pop. As a matter of fact, I'm off now to put them up as I've been going all day.....what with a trip to the neurologist in Boston (which, while it would make for a lovely family comedy, was in no practical way beneficial) and errands afterwards, plus a short visit to see Barb I've actually begun to lose feeling in my legs they're so swollen.

Sorry that things haven't been going so well for you lately. Try to hang in there and hopefully things will start to even out for you a bit.....you sure could use the break. Thanks again for thinking of me. I think of you all often, as well, and will try to be better about popping in more often.....no goosing required, thank you very much Barb :) Okay, really uncomfortable now so I gotta go......I wish everyone a good evening and will hopefully talk to you all soon. Hugs, Tricia

Please let Tricia know that I think about her and hope that she is feeling better and comes back to the group soon! Take Care and LOL!

Dawn

P.S. Thanks for the advice with the water. I have been drinking cranberry juice with gingerale like crazy!

BARBARA TORREY wrote:

Dawn - Thanks for your support. Yesterday the doc talked about going to injectable meds next week if we can't get somewhere this week with all of the side effects. I'm glad to hear that you're tryig to keep the fluids going strong. You're right about being careful about dehydration. I was in a bad place with that two weeks ago and my labs were a mess. Try to keep water at your side at all times and just keep sipping. Ugh. It will get you through it. I've gotten to the point that I rarely eat much solid food....just too difficult. I can make a mean smoothie though. Barbara

Link to comment
Share on other sites

Barb - Thanks. I'm sore, but my bounce back from yesterday's fiasco is actually going better than my previous two trips out to Boston (for much more pleasant reasons). Here ya about the Catholic guilt.....as a fellow member of the "club" will try and hold my contributions to a minimum. Will bring mom now that she's not otherwise occupied.....wait a sec, this hasn't been some elaborate plan of yours just to be her friend has it (**sniff, sniff**) Only kidding, just have conspiracy on the brain today.....been watching Alias reruns ;) TriciaBARBARA TORREY wrote:

Tricia - Glad that you're legs are doing better. My Catholic guilt just wouldn't have been able to handle another slam. I really enjoyed the visit too. Bring your Mom more often ! BarbaraTricia Skiba wrote:

Barb - You'll be happy to know that my legs have shrunk to an only slightly abnormal size. Though I would never dream of blaming anything on your stairs (well, maybe those splinters in my butt might be related, but I'm trying not to sweat the small stuff). Edema is wonderful....but then, I can't really complain about it because I know how to make it stop....it's just that I'm not ready to do that yet, especially after yesterday's visit with the neurologist. If more of the same is really all I have in my future, then I can suffer through balloon legs for a few more weeks. Sad to say, but at this point it beats the alternative. Hope you're doing well with all of those cards you're making. Who knows, maybe you have a side business starting? I am gonna lay low today, though.....my favorite show FINALLY starts again tonight, so my TV will come in handy for once. Take care and thanks again for the coffee and chat yesterday.....mom's grateful, too. Poor woman is bored out of h! er

mind. Guess we know how she feels ;) Hugs, TriciaBARBARA TORREY wrote:

Tricia - What are you doing there sitting in front of the computer when you should be keeping those legs up. I'm not gonna wanna see treetrunk innards when they pop, girl.....Plus I just know that you'll blame it on fighting your way up and down the stairs at my house. Booohooo It will all be my fault. Seriously, dear friend, take it easy and give yourself a quiet day tomorrow to hopefully let the leg dust settle. Isn't edema grand? For now, I will leave the goosing out in the yard with the llamas and geese (who miss you and your mom already). BarbaraTricia Skiba wrote:

Dawn - Thanks for the well wishes. Barb's right, I usually do try to read through the emails just to see how everyone is doing (though, lately I've not been quite so great at that.) but with the SAME kicking up something awful right now, by the time I'm done reading my legs resemble tree trunks and I need to put them up before they pop. As a matter of fact, I'm off now to put them up as I've been going all day.....what with a trip to the neurologist in Boston (which, while it would make for a lovely family comedy, was in no practical way beneficial) and errands afterwards, plus a short visit to see Barb I've actually begun to lose feeling in my legs they're so swollen.

Sorry that things haven't been going so well for you lately. Try to hang in there and hopefully things will start to even out for you a bit.....you sure could use the break. Thanks again for thinking of me. I think of you all often, as well, and will try to be better about popping in more often.....no goosing required, thank you very much Barb :) Okay, really uncomfortable now so I gotta go......I wish everyone a good evening and will hopefully talk to you all soon. Hugs, Tricia

Please let Tricia know that I think about her and hope that she is feeling better and comes back to the group soon! Take Care and LOL!

Dawn

P.S. Thanks for the advice with the water. I have been drinking cranberry juice with gingerale like crazy!

BARBARA TORREY wrote:

Dawn - Thanks for your support. Yesterday the doc talked about going to injectable meds next week if we can't get somewhere this week with all of the side effects. I'm glad to hear that you're tryig to keep the fluids going strong. You're right about being careful about dehydration. I was in a bad place with that two weeks ago and my labs were a mess. Try to keep water at your side at all times and just keep sipping. Ugh. It will get you through it. I've gotten to the point that I rarely eat much solid food....just too difficult. I can make a mean smoothie though. Barbara

Link to comment
Share on other sites

Nah..... not a scheme at all, friend.

Tricia Skiba wrote:

Barb - Thanks. I'm sore, but my bounce back from yesterday's fiasco is actually going better than my previous two trips out to Boston (for much more pleasant reasons). Here ya about the Catholic guilt.....as a fellow member of the "club" will try and hold my contributions to a minimum. Will bring mom now that she's not otherwise occupied.....wait a sec, this hasn't been some elaborate plan of yours just to be her friend has it (**sniff, sniff**) Only kidding, just have conspiracy on the brain today.....been watching Alias reruns ;) TriciaBARBARA TORREY wrote:

Tricia - Glad that you're legs are doing better. My Catholic guilt just wouldn't have been able to handle another slam. I really enjoyed the visit too. Bring your Mom more often ! BarbaraTricia Skiba wrote:

Barb - You'll be happy to know that my legs have shrunk to an only slightly abnormal size. Though I would never dream of blaming anything on your stairs (well, maybe those splinters in my butt might be related, but I'm trying not to sweat the small stuff). Edema is wonderful....but then, I can't really complain about it because I know how to make it stop....it's just that I'm not ready to do that yet, especially after yesterday's visit with the neurologist. If more of the same is really all I have in my future, then I can suffer through balloon legs for a few more weeks. Sad to say, but at this point it beats the alternative. Hope you're doing well with all of those cards you're making. Who knows, maybe you have a side business starting? I am gonna lay low today, though.....my favorite show FINALLY starts again tonight, so my TV will come in handy for once. Take care and thanks again for the coffee and chat yesterday.....mom's grateful, too. Poor woman is bored out of h! ! er

mind. Guess we know how she feels ;) Hugs, TriciaBARBARA TORREY wrote:

Tricia - What are you doing there sitting in front of the computer when you should be keeping those legs up. I'm not gonna wanna see treetrunk innards when they pop, girl.....Plus I just know that you'll blame it on fighting your way up and down the stairs at my house. Booohooo It will all be my fault. Seriously, dear friend, take it easy and give yourself a quiet day tomorrow to hopefully let the leg dust settle. Isn't edema grand? For now, I will leave the goosing out in the yard with the llamas and geese (who miss you and your mom already). BarbaraTricia Skiba wrote:

Dawn - Thanks for the well wishes. Barb's right, I usually do try to read through the emails just to see how everyone is doing (though, lately I've not been quite so great at that.) but with the SAME kicking up something awful right now, by the time I'm done reading my legs resemble tree trunks and I need to put them up before they pop. As a matter of fact, I'm off now to put them up as I've been going all day.....what with a trip to the neurologist in Boston (which, while it would make for a lovely family comedy, was in no practical way beneficial) and errands afterwards, plus a short visit to see Barb I've actually begun to lose feeling in my legs they're so swollen.

Sorry that things haven't been going so well for you lately. Try to hang in there and hopefully things will start to even out for you a bit.....you sure could use the break. Thanks again for thinking of me. I think of you all often, as well, and will try to be better about popping in more often.....no goosing required, thank you very much Barb :) Okay, really uncomfortable now so I gotta go......I wish everyone a good evening and will hopefully talk to you all soon. Hugs, Tricia

Please let Tricia know that I think about her and hope that she is feeling better and comes back to the group soon! Take Care and LOL!

Dawn

P.S. Thanks for the advice with the water. I have been drinking cranberry juice with gingerale like crazy!

BARBARA TORREY wrote:

Dawn - Thanks for your support. Yesterday the doc talked about going to injectable meds next week if we can't get somewhere this week with all of the side effects. I'm glad to hear that you're tryig to keep the fluids going strong. You're right about being careful about dehydration. I was in a bad place with that two weeks ago and my labs were a mess. Try to keep water at your side at all times and just keep sipping. Ugh. It will get you through it. I've gotten to the point that I rarely eat much solid food....just too difficult. I can make a mean smoothie though. Barbara

Link to comment
Share on other sites

- LOL Well, that explains why the nail polish remover that I bought yesterday didn't work. WIl get some new stuff tomorrow, weather permitting. Thanks. Barbara (How are you doing?)KM86@... wrote:

Barbara

oops. It has to have acetone in the nailpolish remover. Forgot to mention that.

In a message dated 1/8/2005 2:14:23 PM Eastern Standard Time, RSD-CRPSofAmerica writes:

Date: Sat, 8 Jan 2005 05:26:57 -0800 (PST) Subject: Re: PatchesDeb - Thanks for all of the advice and for even looking it up. Since others here mentioned the nail polish remover before I had heard from you, I tried it. It didn't work, although the nail polish remover that I have doesn't have acetone in it.. Guess I'm just going to have to settle with the chessboard look.

Link to comment
Share on other sites

  • 2 weeks later...

Jai - I can understand you're being worried about the seizure especially given that you, like many of us here, can't have an MRI. What about an EEG? I've seen plenty of kids where they've been able to pick the seizure stuff on an EEG. Just worried about you, kiddo. Barbarajaismonkey@... wrote:

In a message dated 1/22/2005 6:43:51 A.M. Eastern Standard Time, RSD-CRPSofAmerica writes:

Did he have to return to Iraq after his 10-day? Sorry to hear that you're having such pain in your feet. Perhaps when you see our doc he can juggle the SCS a bit to give you better relief. Also worried about that seizure....Do the know where that's coming form? Good grief, girl....Time for a overhaul. Thinking of you - Barbara

Hi Barbara,

Yes he had to go back to Iraq on Jan20th. He gets another R+R in about 4 months. I am very worried about the seizures. So far the CAT scans look OK. They wanted to do an MRI but cant because I have the SCS. They told me I could not drive for 3 months after the seizure, no biggie because I have not driven in 5 years because of the nature of the disability. One of my dreams is to drive again so I am praying that this seizure business is not going to be a problem. I DO need an overhaul LOL!!!!!!! How are you doing? I hope OK. Thank you for thinking of me!!! Take care, Love Jai

Link to comment
Share on other sites

Jai...I am glad you could enjoy the visit with your friend. I am sorry that you haven't been feeling well and am worried about your seizure. My son had seizures when he was younger and his was dx with an EEG. He did also have an MRI but that was normal except for a gray area that always shows up in children with autism. I found my son seizing when he was 3 yrs old...he had fallen out of bed or I wouldn't have even known. He was on anti-seizure meds for 3 yrs and then after not having another seizure for 2 yrs he was taken off his meds and has been lucky enough to be seizure free since. I hope that everything will work out for you and that your flare up clears up fast...Hugs..GinnyBARBARA TORREY wrote:

Jai - I can understand you're being worried about the seizure especially given that you, like many of us here, can't have an MRI. What about an EEG? I've seen plenty of kids where they've been able to pick the seizure stuff on an EEG. Just worried about you, kiddo. Barbarajaismonkey@... wrote:

In a message dated 1/22/2005 6:43:51 A.M. Eastern Standard Time, RSD-CRPSofAmerica writes:

Did he have to return to Iraq after his 10-day? Sorry to hear that you're having such pain in your feet. Perhaps when you see our doc he can juggle the SCS a bit to give you better relief. Also worried about that seizure....Do the know where that's coming form? Good grief, girl....Time for a overhaul. Thinking of you - Barbara

Hi Barbara,

Yes he had to go back to Iraq on Jan20th. He gets another R+R in about 4 months. I am very worried about the seizures. So far the CAT scans look OK. They wanted to do an MRI but cant because I have the SCS. They told me I could not drive for 3 months after the seizure, no biggie because I have not driven in 5 years because of the nature of the disability. One of my dreams is to drive again so I am praying that this seizure business is not going to be a problem. I DO need an overhaul LOL!!!!!!! How are you doing? I hope OK. Thank you for thinking of me!!! Take care, Love Jai

Link to comment
Share on other sites

Faye - No. No plans for the weekend other than to visit my closest friend who was hospitalized again last night. I was supposed to spend the say and overnight with her today but she ended up going in late last night.

Still very cold here. Just bitter. Staying warm is a major feet.....I'm thinking of making a major sized mitten for my entire body. Brrrrr. When the heck is Spring going to land?

Barbara

Link to comment
Share on other sites

Thanks, Faye. Sometimes when we are the ones being "taken care of," we forget the needs of the ones of those taking care of us. Such a delicate balancing act. While I'm still the only one taking care of me, I hope that I never forget what it can feel like to be on the other side. Maybe all of us should take a moment today to let the ones in our live know how much we appreciate all of their efforts......Maybe it's their day for a special dinner (ok...so you're hurting? Order take-out.), a lovingly drawn bubble bath with candles and music, a freshly laundered blanket, and a sweet tuck-in. BarbaraFAYE PAPPLE-MURRAY wrote:

Hi Barbara - How very right you are, and how nicely eloquated.

Link to comment
Share on other sites

  • 2 weeks later...

Thanks, Jo. My friend didn't mind my being there...I minded. She had just gotten out of the hospital for hemorrhaging (4 units of blood needed) and was also diagnosed with an aortic aneurysm this week. I'm better off at home and needed my space just to deal with all of the feelings that I'm having. I think the pain is a little better than it was and I imagine he will increase the ketamine again when I speak with him. Thanks, Jo. Hope you're doing ok. Barbarajomal1@... wrote:

I hope you're able to read your email. I am so sorry that you've got to go through THIS now. I'm sure your friend doesn't mind having you.. I wish I was closer.

I will keep you in my thoughts and prayers, hoping and praying that the oral ketamine and lidocaine gets you off the pain meds..

Hugs,

Jo

Link to comment
Share on other sites

Hi Barbara!

Congratulations so far on the use of the ketamine and the results you have had so far.

I hope it works the way it should and your pain levels go down or go away completely.

That would be a miracle in my book. I spoke briefly with my doctor in regard to the ketamine, and he was not real comfortable with the thought of using it at all. Will be thinking of you and praying for that miracle. Keep us posted. A friend always, ConnieBARBARA TORREY wrote:

Thanks, Jo. My friend didn't mind my being there...I minded. She had just gotten out of the hospital for hemorrhaging (4 units of blood needed) and was also diagnosed with an aortic aneurysm this week. I'm better off at home and needed my space just to deal with all of the feelings that I'm having. I think the pain is a little better than it was and I imagine he will increase the ketamine again when I speak with him. Thanks, Jo. Hope you're doing ok. Barbarajomal1@... wrote:

I hope you're able to read your email. I am so sorry that you've got to go through THIS now. I'm sure your friend doesn't mind having you.. I wish I was closer.

I will keep you in my thoughts and prayers, hoping and praying that the oral ketamine and lidocaine gets you off the pain meds..

Hugs,

Jo

Link to comment
Share on other sites

  • 2 weeks later...

Faye - Okay, Faye. I will have a buffet here on Tuesday for anyone here that's interested. Gotta wash your own plates though since I might be sleeping.

Infusion nurse just left. I love it when they change the dressing ! It's the only opportunity I get to scratch. I can also try to get my nap in. I tried earlier but knew that they were coming but not the exact time so I was sort of suspended in that pre-sleep space. Nap time. Smell ya later. BarbaraFAYE PAPPLE-MURRAY wrote:

Hi Barbara - I'm coming to your house to eat whatever they don't eat! - geez that Atkins "crap" sounds really kind of yummy how you describe it - maybe you could get a job hawking their books or something....I have an idea - what ever you buy at the grocery store that you don't open, as soon as they leave - take it back for a refund - also - some grocery stores have a policy where if you buy the store brand and you don't like it for whatever reason, even if it's open you can take it back for a refund - it's dirty - but you get your money back.... Lie like a rug....... And I don't think your heart is any tarnished at all.

About family - don't get me started....it is incredible that your one sister comes to visit - she cares about you....the 2 mile "island" sister - well, maybe you are better off with her so far away from you. Maybe she was the kind that would have looked to you for support and "stuff" - and since she knows it should be the other way around - she can't figure out how to do that, so she simply does nothing. I had friends like that....when I had the bar and always had "all access" passes to concerts, I had lots of friends - when I was bedridden for 8 months, I didn't see any of them, not to shovel my driveway, pick up stuff from the grocery store, visit - nothing....now I have one girlfriend that I actually see in person. I truly believe I have gotten the better end of the deal.

About planning to eat at your house - just say because of the new medicene, etc - that you prefer to eat your meals at the house because you are still having bouts of nausea at times from eating? "insert excuse here"? Be a rug Barb! .

I have no heart - I left it at the bar one night, when I owned it,

some jerk thought it was a new jello shooter - long gone now...full of poop!

Any ways - what time is dinner? and is snacking allowed throughout the day? Love ya my friend - have a nice day! - FayeBARBARA TORREY wrote:

Well, Faye, I think I've got a few plans for the cooking. The difficulty is that althought my sister is on the Atkins diet, she cheats her butt off (lol or on) whenever she comes up from the Cape plus a good friend of ours (who is diabetic) is coming too. Lovely news and I am looking forward to it. They live on Cape Cod...about 3 hours or so from here and very dear of them to come. My sister has a very difficult situation (her daughter is at home and on full life support) yet she still has been trying to manage to get up her about every six weeks. Incredibly kind of her. I see her more often than the sister that lives 2 miles away. Honest.

What inevitably happens is that I spend the extra bucks on the protein and stuff that works for her and then she wants to go out to eat. Gonna complain here and I know it sounds awful of me (and I really shouldn't given how she extends herself) since I know you won't tell a soul. I really don't have the $$ to both buy all this food (which I won't end up eating because of the nausea and appetite issues) and also spend the money to hit restaurants. I don't want to hurt her feelings so I've been keeping my mouth shut. I guess I'm going to have to say something and plan that we will eat here. Now don't I sound like an ungrateful wench (you can skip the heart of gold part....it's more likely pretty rusty)?

I'm going to get the stuff for, among other things, pecan crusted chicken breasts with a light dijon sauce (she can leave that part off), chili and cornbread, stuffed pork chops (can leave the stuffing out of hers or fill hers with broccoli and cheese) plus the other various and sundry things that you need to have on hand for guests/family. Since she loads the protein during the day I'll make sure that I have plenty of hamburg and cheeses on hand for her snacks throughout the day. I'll pretty much stick to my smoothies and juice but will try bits of what I make.

Prayers going for all of us. I enjoy your letters and your kind thoughts. The heart of gold appears to be a more apt description of you. Barbara

Link to comment
Share on other sites

Faye - Okay, Faye. I will have a buffet here on Tuesday for anyone here that's interested. Gotta wash your own plates though since I might be sleeping.

Infusion nurse just left. I love it when they change the dressing ! It's the only opportunity I get to scratch. I can also try to get my nap in. I tried earlier but knew that they were coming but not the exact time so I was sort of suspended in that pre-sleep space. Nap time. Smell ya later. BarbaraFAYE PAPPLE-MURRAY wrote:

Hi Barbara - I'm coming to your house to eat whatever they don't eat! - geez that Atkins "crap" sounds really kind of yummy how you describe it - maybe you could get a job hawking their books or something....I have an idea - what ever you buy at the grocery store that you don't open, as soon as they leave - take it back for a refund - also - some grocery stores have a policy where if you buy the store brand and you don't like it for whatever reason, even if it's open you can take it back for a refund - it's dirty - but you get your money back.... Lie like a rug....... And I don't think your heart is any tarnished at all.

About family - don't get me started....it is incredible that your one sister comes to visit - she cares about you....the 2 mile "island" sister - well, maybe you are better off with her so far away from you. Maybe she was the kind that would have looked to you for support and "stuff" - and since she knows it should be the other way around - she can't figure out how to do that, so she simply does nothing. I had friends like that....when I had the bar and always had "all access" passes to concerts, I had lots of friends - when I was bedridden for 8 months, I didn't see any of them, not to shovel my driveway, pick up stuff from the grocery store, visit - nothing....now I have one girlfriend that I actually see in person. I truly believe I have gotten the better end of the deal.

About planning to eat at your house - just say because of the new medicene, etc - that you prefer to eat your meals at the house because you are still having bouts of nausea at times from eating? "insert excuse here"? Be a rug Barb! .

I have no heart - I left it at the bar one night, when I owned it,

some jerk thought it was a new jello shooter - long gone now...full of poop!

Any ways - what time is dinner? and is snacking allowed throughout the day? Love ya my friend - have a nice day! - FayeBARBARA TORREY wrote:

Well, Faye, I think I've got a few plans for the cooking. The difficulty is that althought my sister is on the Atkins diet, she cheats her butt off (lol or on) whenever she comes up from the Cape plus a good friend of ours (who is diabetic) is coming too. Lovely news and I am looking forward to it. They live on Cape Cod...about 3 hours or so from here and very dear of them to come. My sister has a very difficult situation (her daughter is at home and on full life support) yet she still has been trying to manage to get up her about every six weeks. Incredibly kind of her. I see her more often than the sister that lives 2 miles away. Honest.

What inevitably happens is that I spend the extra bucks on the protein and stuff that works for her and then she wants to go out to eat. Gonna complain here and I know it sounds awful of me (and I really shouldn't given how she extends herself) since I know you won't tell a soul. I really don't have the $$ to both buy all this food (which I won't end up eating because of the nausea and appetite issues) and also spend the money to hit restaurants. I don't want to hurt her feelings so I've been keeping my mouth shut. I guess I'm going to have to say something and plan that we will eat here. Now don't I sound like an ungrateful wench (you can skip the heart of gold part....it's more likely pretty rusty)?

I'm going to get the stuff for, among other things, pecan crusted chicken breasts with a light dijon sauce (she can leave that part off), chili and cornbread, stuffed pork chops (can leave the stuffing out of hers or fill hers with broccoli and cheese) plus the other various and sundry things that you need to have on hand for guests/family. Since she loads the protein during the day I'll make sure that I have plenty of hamburg and cheeses on hand for her snacks throughout the day. I'll pretty much stick to my smoothies and juice but will try bits of what I make.

Prayers going for all of us. I enjoy your letters and your kind thoughts. The heart of gold appears to be a more apt description of you. Barbara

Link to comment
Share on other sites

Cathy

Best of luck at the doc visit today

i am iin constant turmoil. new grand daughter. taken away from parentbecause of buse. seen first pictures of her yesterday. she is now 5months old. i want to find them and take them out. for hurting her.haveto go to cancer dr, today. she ordred this visit. tired and in a lot ofpain. burns still killing me. plus all this stress joe is having a lotof medical problems. trying to keep him from aving another major strokeor going off deep end. but beside this everything is fine as frogshare. wish you were feeling better. i look fowardto spring. this meansto me new life. so maybe things will work out. thanks for caring andwrite when eer you can. thanks for teh explanation about ketamine , itsounds like a weird drug. wish your mytositis would go away. whatcaused this disease anyway. love ya cathy

Link to comment
Share on other sites

i am iin constant turmoil. new grand daughter. taken away from parent

because of buse. seen first pictures of her yesterday. she is now 5

months old. i want to find them and take them out. for hurting her.have

to go to cancer dr, today. she ordred this visit. tired and in a lot of

pain. burns still killing me. plus all this stress joe is having a lot

of medical problems. trying to keep him from aving another major stroke

or going off deep end. but beside this everything is fine as frogs

hare. wish you were feeling better. i look fowardto spring. this means

to me new life. so maybe things will work out. thanks for caring and

write when eer you can. thanks for teh explanation about ketamine , it

sounds like a weird drug. wish your mytositis would go away. what

caused this disease anyway. love ya cathy

Link to comment
Share on other sites

Cathy ..i am so sorry that you are going through so much emtional wise. I can't imagine what you are going through when it somes to finding out that your grandaughter was abused. i hope all goes well with your drs appt and that joe has some relief of stress so he does not get worse. Please let us know how the drs visit goes..Hugs..Ginnyfishthatsmiles@... wrote:

i am iin constant turmoil. new grand daughter. taken away from parentbecause of buse. seen first pictures of her yesterday. she is now 5months old. i want to find them and take them out. for hurting her.haveto go to cancer dr, today. she ordred this visit. tired and in a lot ofpain. burns still killing me. plus all this stress joe is having a lotof medical problems. trying to keep him from aving another major strokeor going off deep end. but beside this everything is fine as frogshare. wish you were feeling better. i look fowardto spring. this meansto me new life. so maybe things will work out. thanks for caring andwrite when eer you can. thanks for teh explanation about ketamine , itsounds like a weird drug. wish your mytositis would go away. whatcaused

this disease anyway. love ya cathy

Link to comment
Share on other sites

Cathy,

So sorry for being nosey, but what exactly happened to your Grandbaby? Is it your daughters or sons child! What the heck did they do to a five month old baby and do they have any other children? You see I am a huge advocate for children and animal abusers! Neither can defend themselves when it comes to abuse and I just get sick thinking about anyone hurting either! I know it is not the same at all, but my dog Holly was severely abused and that is the reason I adopted her! I wasn't even sure if I was ready for another dog, but driving home thinking about what she went through had myself and my Mom in tears! So I went home and emptied the car and an hour later I had Holly in the car and she has been with me since and I love her more than anything and spoil her wrotten!!! For an animal to be abused and still find it in her heart to love people amazes me!

I really hope that you and your husband are able to see your grandchild soon and the baby's parents get some help for what they did! Take Care and hope that you are feeling better soon. Best Wishes to your husband also and hope that he feels better! LOL Always!

Dawn

fishthatsmiles@... wrote:

i am iin constant turmoil. new grand daughter. taken away from parentbecause of buse. seen first pictures of her yesterday. she is now 5months old. i want to find them and take them out. for hurting her.haveto go to cancer dr, today. she ordred this visit. tired and in a lot ofpain. burns still killing me. plus all this stress joe is having a lotof medical problems. trying to keep him from aving another major strokeor going off deep end. but beside this everything is fine as frogshare. wish you were feeling better. i look fowardto spring. this meansto me new life. so maybe things will work out. thanks for caring andwrite when eer you can. thanks for teh explanation about ketamine , itsounds like a weird drug. wish your mytositis would go away. whatcaused

this disease anyway. love ya cathy

Link to comment
Share on other sites

Faye -

Grandchildren are terrific. I remember in the wee hours of the morning when what was then to be my nephew-in-law and I were sharing coffee while the rest of the bums in the house slept, we got talking about a really bizarre assortment of topics. Knowing how dearly I loved kids, he asked if I had regrets that I had never had a child of my own. I remember looking over at him and saying, "Oh, Tod. Not the same, for sure, but I've actually 'had' more children than most people could imagine." FIlled up a bit, I added "what I truly regret is that I will never have a grandchild." Bless this man, not missing a beat, he looked at me and responded,"Oh, Barb. Of course you will. You will have ours."

In a bit of a wee funk yesterday, I happened to drive by their house (2 miles away), and threw caution to the wind...dropping in without calling first. As my niece and her husband now enter the beginning of their six month of pregnancy, I can't even begin to express my joy and excitement for them, for their parents, and for myself. I can't wait to meet the little boy who will join the world in very early July. What I had initially planned to be a "Okay, three minutes, how pregnant are you looking?" turned into over three hours of pouring over catalogues to look at cribs, the coordinating sheets, bedskirts, quilts, and what-not. We laughed hysterically over the memory of her lifting her shirt to me when she was a pre-teen, preciously innocenct and unguarded, asking "Do you think that this could be breast tissue?"

Another great memory that we shared went back to the day that was the day of my mother's wake. My sister was an emotional mess and two hours before the stores were to close, she realized that none of her three kids had "appropriate" clothes. "Not to worry," I say.

"I'll take them." I scooped up all three of them and off to the mall we drove. With less than five minutes before the mall was scheduled to close, this same niece decides out of nowhere that she just has to have her first bra. I raised my eyes skyward and thought "Oh, for the love of God." We did it.

When I returned to their home, however, I realized that somehow I realized that I had not one dress to my name....didn't own one, and hate "frocks." There are blessings....My sister, a clotheshorse, had a perfectly simple navy blue dress still with the original tags in the back of her closet. She had forgotten that she had ever even purchased it and it fit me to a tee.

I'll be broke by the time that my "grandchild" arrives. To live next door? Hmmmm...two miles away is just perfect, I think. Love 'em up, Faye. Also very glad to hear that the germs have appeared to take leave of your house. Love- Barbara

FAYE PAPPLE-MURRAY wrote:

Hi Barbara - Andy is still working everyday, this morning he was up at 4 and gone....... But my grand daughter is here so the world is sunnier and the house is messier and noisier. The house next door to us just got repo-d by the bank, and our back yards connect and our fenced together....so my oldest daughter is going to look at the place - nothing I'd like more than having 4 grandkids right next door, kind of ?, I think - still while they are on the other side of town....it would be great in one way, lots of ways really - "if it is meant to be it will happen, if not it never was".

Link to comment
Share on other sites

  • 2 weeks later...
Guest guest

Barbara,

thank you for your support and the answers to the questions I have.

We know for a fact that is is RSD. I don't know how effective this

therapy would be if all. I just heard about it from a physical

therapist the other night and have been trying to educate myself on

the treatments and whatnot. The therapist informed me that the

therapy used to treat lymphedema (compression therapy) has also been

used to treat some patients with RSD. He said he had used it on one

patient and had miraculous results. I'm not sure what to use. My

father has not had much done to help with his RSD, mainly because no

one knows much about it, let alone what to do for treatment. He just

bears through the pain and keeps on living. It is through God's

strenght that he is able to do this. Thank you for the warm welcome.

i appreciate it.

Kathleen

> Kathleen - So sorry about your dad's struggle with this and your

having to watch how it effects him Re the lymphedema thing, that was

raised very early on as a question for me. The ultimate diagnosis

agreed upon by all, however, was RSD. If your Dad's docs think that

offering the treatment that would be ordinarily used for lymphedema

might worth a shot, I'd think about considering it but not after

first asking " Could this in any possible way aggravate the RSD if it

is RSD and not lymphedema. " Their response might help you and your

dad in your choice of treatment decision.

> All that being said, welcome to the group ! Barbara

>

Link to comment
Share on other sites

Guest guest

Barbara,

no he has not been seen by anyone at the Pain Management

Clinic...Where is it located? Do they do anything else with RSD other

than pain? I guess right now is a starting point or even better, a

rough plan - of where to go, what to do, ect. My father is more

knowledgeable on the subject of RSD. Like I've already said, I'm just

beginning to learn. I'm just trying to find out the steps he should

take to start coping with this through the help of those few people

that are knowledgeable in this field.

God bless,

Kathleen

> Kathleen - Has he been seen by folks at a Pain Management Clinic

and received blocks or anything? It's a good place to start and they

would work in concert with his other doc. Barbara

>

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...