Lupus FAQ

Question:

Ok guys, I’m trying to catch up but I’m floored with over 300 posts to read! Tomorrow (Monday) is George’s day in Richmond. He has his out-patient procedure prior to radioactive implants on May 3. So he will not be very comfortable tomorrow night. We leave first thing in the morning to drive 2 hours to the hospital (MCV) in Richmond. First he sees the anesthesiologist and then his radiation oncologist where he will have the studies done. Afterwards we will go to my nephew’s restaurant for dinner. We’ll be starving as George cannot eat anything and is going there with a very clean system!! He is only allowed liquids until after the procedure. So we will pig out on the best Italian food imaginable!! Then drive home later in the evening. Long day, but it will be nice to see my nephew if the restaurant is not too busy – which is rare. Then maybe it will be back to normal around here for a few days. I must admit I’m beginning to wonder just what is normal! I love taking the photos for the Cooperative Extension Research Station. Nothing like combining my two favorite things horticulture and photography. And the folks there are just great. This is going to be a wonderful project that will probably last longer than I originally expected. Then of course there is work: the j-o-b. It helps pay the medical bills so I won’t complain too much. I’m trying really hard not to get sick. I can’t afford to flare. Both ears are killing me and I doubt that is lupus! Try common ear infections. Now, what the heck can I do about them? Can’t take a decongestant. So maybe Tuesday I’ll catch up? Probably not! Although a nap would be nice. I took a lazy day today as my husband had all the computers going so I did laundry and tried to read a book but I kept drifting off to sleep. Now to bed! See ya either late Monday night or hopefully Tues- if I don’t work. Bev

Response:

Bev, Our thoughts and prayers will be with both you and George tomorrow. Enjoy your dinner at your nephews and have a few xtra bites for me.  I love really good Italian food (one of the things that I miss about New York) and we don’t have a good restaurant around here. So good to hear that you are enjoying your picture taking position.  Too bad you aren’t making your living doing that.  Would be nice to be doing something that you really enjoyed. As for your ears, if it is an infection you will need to see a doctor and get them taken care of.  Even if it is allergies you would be better off with a doc checking them!  I know that you have avoided taking care of yourself and such because of the medical bills etc that you and your husband are accumulating with his treatment.  No insurance if I remember correctly….BUT don’t ignore your medical problems….cheaper when you catch them when just beginning. Have a very safe trip and remember that we are all pulling for George. Hugs, Sherry "Beverley" <pottings…@sybercom.net> wrote in message

news:uc73ptqp55btea@corp.supernews.com… – Hide quoted text — Show quoted text -> Ok guys, I’m trying to catch up but I’m floored with over 300 posts to read! > Tomorrow (Monday) is George’s day in Richmond. He has his out-patient > procedure prior to radioactive implants on May 3. So he will not be very > comfortable tomorrow night. We leave first thing in the morning to drive 2 > hours to the hospital (MCV) in Richmond. First he sees the anesthesiologist > and then his radiation oncologist where he will have the studies done. > Afterwards we will go to my nephew’s restaurant for dinner. We’ll be > starving as George cannot eat anything and is going there with a very clean > system!! He is only allowed liquids until after the procedure. So we > will pig out on the best Italian food imaginable!! Then drive home later in > the evening. Long day, but it will be nice to see my nephew if the > restaurant is not too busy – which is rare. Then maybe it will be back to > normal around here for a few days. I must admit I’m beginning to wonder just > what is normal! > I love taking the photos for the Cooperative Extension Research Station. > Nothing like combining my two favorite things horticulture and photography. > And the folks there are just great. This is going to be a wonderful project > that will probably last longer than I originally expected. > Then of course there is work: the j-o-b. It helps pay the medical bills so I > won’t complain too much. > I’m trying really hard not to get sick. I can’t afford to flare. Both > ears are killing me and I doubt that is lupus! Try common ear infections. > Now, what the heck can I do about them? Can’t take a decongestant. > So maybe Tuesday I’ll catch up? Probably not! Although a nap would be nice. > I took a lazy day today as my husband had all the computers going so I did > laundry and tried to read a book but I kept drifting off to sleep. > Now to bed! See ya either late Monday night or hopefully Tues- if I don’t > work. > Bev

Response:

Huge hugs to you and George. Judith – trying to catch up on all the posts "Beverley" <pottings…@sybercom.net> wrote in message

news:uc73ptqp55btea@corp.supernews.com… – Hide quoted text — Show quoted text -> Ok guys, I’m trying to catch up but I’m floored with over 300 posts to read! > Tomorrow (Monday) is George’s day in Richmond. He has his out-patient > procedure prior to radioactive implants on May 3. So he will not be very > comfortable tomorrow night. We leave first thing in the morning to drive 2 > hours to the hospital (MCV) in Richmond. First he sees the anesthesiologist > and then his radiation oncologist where he will have the studies done. > Afterwards we will go to my nephew’s restaurant for dinner. We’ll be > starving as George cannot eat anything and is going there with a very clean > system!! He is only allowed liquids until after the procedure. So we > will pig out on the best Italian food imaginable!! Then drive home later in > the evening. Long day, but it will be nice to see my nephew if the > restaurant is not too busy – which is rare. Then maybe it will be back to > normal around here for a few days. I must admit I’m beginning to wonder just > what is normal! > I love taking the photos for the Cooperative Extension Research Station. > Nothing like combining my two favorite things horticulture and photography. > And the folks there are just great. This is going to be a wonderful project > that will probably last longer than I originally expected. > Then of course there is work: the j-o-b. It helps pay the medical bills so I > won’t complain too much. > I’m trying really hard not to get sick. I can’t afford to flare. Both > ears are killing me and I doubt that is lupus! Try common ear infections. > Now, what the heck can I do about them? Can’t take a decongestant. > So maybe Tuesday I’ll catch up? Probably not! Although a nap would be nice. > I took a lazy day today as my husband had all the computers going so I did > laundry and tried to read a book but I kept drifting off to sleep. > Now to bed! See ya either late Monday night or hopefully Tues- if I don’t > work. > Bev

Response:

Question:

If she’s already found something else to do then I don’t think she is resting! Bev "Sherry" <hurst…@NoSpam.invalid> wrote in message

news:CrJca.2668$c71.162@newssvr19.news.prodigy.com… – Hide quoted text — Show quoted text -> Judith, > The state of CA must be getting a good soaking as it has been raining here > since last night.  So much for the plans for our weekend…unless we work in > the yard and take a shower at the same time. > Sorry that you missed the chance for the shoot!  Maybe it is intended that > you have one more weekend of rest. > Hugs, > Sherry > "J Rogow" <JRo…@SpammenotNewsguy.com> wrote in message > news:b4vl7201die@enews4.newsguy.com… > > There was a shoot planned this morning, I felt good, planned > > to go have some much needed fun – and . . . Rain! > > So, I’m getting some more volunteer PR stuff done instead. > > Judith, pouting in "sunny" SoCal

Response:

"Sherry" <hurst…@NoSpam.invalid> wrote in message

news:CrJca.2668$c71.162@newssvr19.news.prodigy.com… > Judith, > The state of CA must be getting a good soaking as it has been raining here > since last night.  So much for the plans for our weekend…unless we work in > the yard and take a shower at the same time. > Sorry that you missed the chance for the shoot!  Maybe it is intended that > you have one more weekend of rest.

Well, I’ll need it – now. (See previous post) Judity – sulking in SoCal

Response:

I never learned to rest . . . perhaps I should do so now? "Beverley" <beverly.brow…@verizon.net> wrote in message

news:F6Kca.7924$IM3.5818@nwrddc03.gnilink.net… – Hide quoted text — Show quoted text -> If she’s already found something else to do then I don’t think she is > resting! > Bev > "Sherry" <hurst…@NoSpam.invalid> wrote in message > news:CrJca.2668$c71.162@newssvr19.news.prodigy.com… > > Judith, > > The state of CA must be getting a good soaking as it has been raining here > > since last night.  So much for the plans for our weekend…unless we work > in > > the yard and take a shower at the same time. > > Sorry that you missed the chance for the shoot!  Maybe it is intended that > > you have one more weekend of rest. > > Hugs, > > Sherry > > "J Rogow" <JRo…@SpammenotNewsguy.com> wrote in message > > news:b4vl7201die@enews4.newsguy.com… > > > There was a shoot planned this morning, I felt good, planned > > > to go have some much needed fun – and . . . Rain! > > > So, I’m getting some more volunteer PR stuff done instead. > > > Judith, pouting in "sunny" SoCal

Response:

There was a shoot planned this morning, I felt good, planned to go have some much needed fun – and . . . Rain! So, I’m getting some more volunteer PR stuff done instead. Judith, pouting in "sunny" SoCal

Response:

Judith, The state of CA must be getting a good soaking as it has been raining here since last night.  So much for the plans for our weekend…unless we work in the yard and take a shower at the same time. Sorry that you missed the chance for the shoot!  Maybe it is intended that you have one more weekend of rest. Hugs, Sherry "J Rogow" <JRo…@SpammenotNewsguy.com> wrote in message

news:b4vl7201die@enews4.newsguy.com… – Hide quoted text — Show quoted text -> There was a shoot planned this morning, I felt good, planned > to go have some much needed fun – and . . . Rain! > So, I’m getting some more volunteer PR stuff done instead. > Judith, pouting in "sunny" SoCal

Response:

Sounds like a plan – except I’m exhausted right now and achy – how about a rain check? "Wende" <n…@cox.net> wrote in message

news:6ZM2a.46718$IX4.19908@news1.central.cox.net… – Hide quoted text — Show quoted text -> ok, I can fly into Vegas. My sister and her family live there, you pick me > up and we will go do something!! Just thought I would pipe up. I will talk > to you later. Wende > "J Rogow" <JRo…@SpammenotNewsguy.com> wrote in message > news:b2f2ub01i6b@enews2.newsguy.com… > > "Grace Casselman" <gr…@casselman.net> wrote in message > > news:3E4B08D6.53F3B7FD@casselman.net… > > > Calgary, Alberta. > > > > Yeah, perhaps we could share accommodations – I forget where you live? > > Stampede country! > > I rode in the parade once. > > You’d have to fly into Vegas and have me pick you up, then.

Response:

All the Usenet posts disappeared! Grace, I know we were talking about trade shows. BJ – undoubtedly it’s cold there (Bruce, too) KC had her claws out And loads of nice people needed hugs.

Response:

Yes, but I don’t think I had any more to say about them… just, yes, I’ve been to several of the big shows, but I haven’t travelled much in the last couple of years… But it’s kind of fun; if I find myself heading off to one, I’ll have to check to see if you’re going! Who do you write for? Grace.  From:              "J Rogow" <JRo…@SpammenotNewsguy.com>  Organization:              http://extra.newsguy.com  Newsgroups:              alt.support.lupus All the Usenet posts disappeared! Grace, I know we were talking about trade shows. BJ – undoubtedly it’s cold there (Bruce, too) KC had her claws out And loads of nice people needed hugs.

Response:

Hi Grace, as of an hour or so ago, she e-mailed me the following" It’s a server problem, and I’m too miserable today to bother reloading.  Will just have to hope I haven’t missed anything important." So she can’t see your post as of the moment, but hopefully she’ll get feeling better and be able to correct the problem and be back to respond. Just lettying ya know. Hugs J – Hide quoted text — Show quoted text -Grace Casselman wrote: > Yes, but I don’t think I had any more to say about them… just, yes, > I’ve > been to several of the big shows, but I haven’t travelled much in the > last > couple of years… > But it’s kind of fun; if I find myself heading off to one, I’ll have to > check to see if you’re going! Who do you write for? > Grace. >  From: >              "J Rogow" <JRo…@SpammenotNewsguy.com> >  Organization: >              http://extra.newsguy.com >  Newsgroups: >              alt.support.lupus > All the Usenet posts disappeared! > Grace, I know we were talking about trade shows. > BJ – undoubtedly it’s cold there (Bruce, too) > KC had her claws out > And loads of nice people needed hugs.

Response:

"Grace Casselman" <gr…@casselman.net> wrote in message

news:3E4AAD28.FB893678@casselman.net… > Yes, but I don’t think I had any more to say about them… just, yes, > I’ve > been to several of the big shows, but I haven’t travelled much in the > last > couple of years… > But it’s kind of fun; if I find myself heading off to one, I’ll have to > check to see if you’re going! Who do you write for?

Yeah, perhaps we could share accommodations – I forget where you live?

Response:

Calgary, Alberta. – Hide quoted text — Show quoted text -> Yeah, perhaps we could share accommodations – I forget where you live?

Response:

"Grace Casselman" <gr…@casselman.net> wrote in message

news:3E4B08D6.53F3B7FD@casselman.net… > Calgary, Alberta. > > Yeah, perhaps we could share accommodations – I forget where you live?

Stampede country! I rode in the parade once. You’d have to fly into Vegas and have me pick you up, then.

Response:

ok, I can fly into Vegas. My sister and her family live there, you pick me up and we will go do something!! Just thought I would pipe up. I will talk to you later. Wende "J Rogow" <JRo…@SpammenotNewsguy.com> wrote in message

news:b2f2ub01i6b@enews2.newsguy.com… – Hide quoted text — Show quoted text -> "Grace Casselman" <gr…@casselman.net> wrote in message > news:3E4B08D6.53F3B7FD@casselman.net… > > Calgary, Alberta. > > > Yeah, perhaps we could share accommodations – I forget where you live? > Stampede country! > I rode in the parade once. > You’d have to fly into Vegas and have me pick you up, then.

Response:

In article <B8E2115B.62A6%paulalo…@comcast.net>, Paula Love <paulalo…@comcast.net> wrote [ >Tomorrow I go to my onocologist and try to convince him to take out the >problem >Tomorrow night i go to the russian circus with mother in law (we do NOT get >along)

Ask the oncologist to deal with MIL? -- Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

OMG never thought of that!! I’ll ask him, thanx! Paula from AL – Hide quoted text — Show quoted text -> From: Andy <a…@kitzbuhel.demon.co.uk> > Organization: meathome > Newsgroups: alt.support.lupus > Date: Wed, 17 Apr 2002 11:02:38 +0100 > Subject: Re: ArrrgggH! > In article <B8E2115B.62A6%paulalo…@comcast.net>, Paula Love > <paulalo…@comcast.net> wrote > [ >> Tomorrow I go to my onocologist and try to convince him to take out the >> problem >> Tomorrow night i go to the russian circus with mother in law (we do NOT get >> along) > Ask the oncologist to deal with MIL? > -- > Andy [Editor, Austrian Philatelic Society] > For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> > For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> > For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

Hi Judith, Will it be warm at Belleview? BJ-seeking heat. "J Rogow" <JRo…@ridgenet.net> wrote in message

news:a9iice0hqf@enews4.newsguy.com… – Hide quoted text — Show quoted text -> OK, we have 11 hours, 30 "I needs", 11 days, and a time to be named > later. > The grand prize is getting to bunk in with me at Belleview<g> > "ruth tay" <ruth…@mcn.org> wrote in message > news:ruthtay-1604021755320001@ha-1o-men-p4-m09.mcn.org… > > In article <a9hni401…@enews4.newsguy.com>, "J Rogow" > > <JRo…@ridgenet.net> wrote: > > > Wednesday is my second appointment with Dr. H.  I’ll get the results > > > of the blood work, and we’ll decide on a treatment plan. > > > Also, Saturday is the big social event – no stress *there*<g>. > > > Monday I have the head knots removed. > > > Thursday is MOTH’s surgery. > > > Want to start a pool on the nervous breakdown? > > How about 11 days after Moth  comes home about May 6.  Memories of the > fun > > you had on Saturday will keep you steady until then.   ruth

Response:

I sure *hope* so.  It is low 50s here now since Bruce took all out heat away. "BJ" <B…@sk.nojunk.ca> wrote in message

news:ubr4oagucn9s0e@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Judith, > Will it be warm at Belleview? > BJ-seeking heat. > "J Rogow" <JRo…@ridgenet.net> wrote in message > news:a9iice0hqf@enews4.newsguy.com… > > OK, we have 11 hours, 30 "I needs", 11 days, and a time to be named > > later. > > The grand prize is getting to bunk in with me at Belleview<g> > > "ruth tay" <ruth…@mcn.org> wrote in message > > news:ruthtay-1604021755320001@ha-1o-men-p4-m09.mcn.org… > > > In article <a9hni401…@enews4.newsguy.com>, "J Rogow" > > > <JRo…@ridgenet.net> wrote: > > > > Wednesday is my second appointment with Dr. H.  I’ll get the results > > > > of the blood work, and we’ll decide on a treatment plan. > > > > Also, Saturday is the big social event – no stress *there*<g>. > > > > Monday I have the head knots removed. > > > > Thursday is MOTH’s surgery. > > > > Want to start a pool on the nervous breakdown? > > > How about 11 days after Moth  comes home about May 6.  Memories of the > > fun > > > you had on Saturday will keep you steady until then.   ruth

Response:

> Maybe she really wants your company, and doesn’t know how to ask?

its not that and its a looooonngg story

Response:

Paula, want to swap mother in law stories????  LOL  I have one from hell and 35 years with her son. Sherry "Paula Love" <paulalo…@comcast.net> wrote in message

news:B8E2328C.62D7%paulalove3@comcast.net… – Hide quoted text — Show quoted text -> > Maybe she really wants your company, and doesn’t know how to ask? > its not that and its a looooonngg story

Response:

In article <a9hni401…@enews4.newsguy.com>, "J Rogow" <JRo…@ridgenet.net> wrote: > Wednesday is my second appointment with Dr. H.  I’ll get the results > of the blood work, and we’ll decide on a treatment plan. > Also, Saturday is the big social event – no stress *there*<g>. > Monday I have the head knots removed. > Thursday is MOTH’s surgery. > Want to start a pool on the nervous breakdown?

How about 11 days after Moth  comes home about May 6.  Memories of the fun you had on Saturday will keep you steady until then.   ruth

Response:

OK, we have 11 hours, 30 "I needs", 11 days, and a time to be named later. The grand prize is getting to bunk in with me at Belleview<g> "ruth tay" <ruth…@mcn.org> wrote in message

news:ruthtay-1604021755320001@ha-1o-men-p4-m09.mcn.org… – Hide quoted text — Show quoted text -> In article <a9hni401…@enews4.newsguy.com>, "J Rogow" > <JRo…@ridgenet.net> wrote: > > Wednesday is my second appointment with Dr. H.  I’ll get the results > > of the blood work, and we’ll decide on a treatment plan. > > Also, Saturday is the big social event – no stress *there*<g>. > > Monday I have the head knots removed. > > Thursday is MOTH’s surgery. > > Want to start a pool on the nervous breakdown? > How about 11 days after Moth  comes home about May 6.  Memories of the fun > you had on Saturday will keep you steady until then.   ruth

Response:

"Paula Love" <paulalo…@comcast.net> wrote in message

news:B8E2328C.62D7%paulalove3@comcast.net… > > Maybe she really wants your company, and doesn’t know how to ask? > its not that and its a looooonngg story

I have lots of time, and need a diversion<g>.

Response:

>But – for the Russian Circus, isn’t it worth the aggrivation?  Is it Circus >Moscow?

shes paying its for the grandchild and she wont take him by himself.

Response:

"Paula Love" <paulalo…@comcast.net> wrote in message

news:B8E22033.62C2%paulalove3@comcast.net… > >But – for the Russian Circus, isn’t it worth the aggrivation?  Is it Circus > >Moscow? > shes paying its for the grandchild and she wont take him by himself.

Maybe she really wants your company, and doesn’t know how to ask?

Response:

We’d both better get to perking up, then<g> "BJ" <B…@sk.nojunk.ca> wrote in message

news:ubpcq81fci4sfb@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Judith, > Don’t worry about not being positve. We all deal with our own sh**, and it > is as rotten for one, as it is for another. I don’t feel all that +today > either, even though K seems to be feeling better. It is cold and dreary here > too. Maybe that’s why. > BJ-in tune with you today > "J Rogow" <JRo…@ridgenet.net> wrote in message > news:a9i9r602v2s@enews4.newsguy.com… > > For some reason today is *dismal* – maybe the chilly weather. > > May I be positive tomorrow, instead, please? > > Have a fantastic trip – wish I were going along. > > "Sherry" <sstof…@inreach.com> wrote in message > > news:4a0v8.2695$FR1.316287092@news.inreach.com… > > > I can relate to the not a positive day but I know that your attitude > > also > > > has lots to do with it also!  So keep positive thoughts. All will be > > fine. > > > MOTH will come thru with flying colors and not be as bad a pt as you > > are > > > thinking.  But sure sounds like a busy week.  Maybe good to have it > > all > > > happening at once. > > > I am flaring and just in time for my trip.  Went to the doc yesterday > > and he > > > is talking about Methotrexate.  Not wanting to start it just before I > > leave > > > so will rediscuss after I get back Till then will just keep everything > > the > > > same and hope for the best. > > > Darn it can’t make up its mind if it is winter, spring or summer in > > this > > > neck of the woods.  Had gusts of wind 40-50 mph hour day before > > yesterday > > > (thinned the plums on the fruitless plum tree what a mess and blew > > about 4 > > > big rigs over in the western part of our county), snow as low as > > Sonora > > > (about 40 miles "up" the road from here) and to think a few days ago I > > was > > > in shorts and a tank top. > > > Will be thinking of you and keeping you both in my prayers. > > > Hugs, > > > Sherry > > > "J Rogow" <JRo…@ridgenet.net> wrote in message > > > news:a9htuv025ur@enews4.newsguy.com… > > > > Thanks, I guess this isn’t a very positive day. > > > > "Sherry" <sstof…@inreach.com> wrote in message > > > > news:A7_u8.2683$Ty1.315091056@news.inreach.com… > > > > > Judith,  Everything will be fine!  You like the new doc, the tests > > may > > > > only > > > > > confirm what you already know so no big surprises there I’m sure. > > You > > > > know > > > > > your body and how you feel and you stay up on what everything > > might > > > > be.  The > > > > > head knot removal will go just fine and so will the MOTH’s > > surgery! > > > > Just > > > > > don’t cause yourself more "pain" by worry.  One day at a time, > > smile > > > > and a > > > > > positive outlook!  NO Breakdown! > > > > > Hugs, > > > > > Sherry > > > > > "J Rogow" <JRo…@ridgenet.net> wrote in message > > > > > news:a9hni401nu6@enews4.newsguy.com… > > > > > > Wednesday is my second appointment with Dr. H.  I’ll get the > > results > > > > > > of the blood work, and we’ll decide on a treatment plan. > > > > > > Also, Saturday is the big social event – no stress *there*<g>. > > > > > > Monday I have the head knots removed. > > > > > > Thursday is MOTH’s surgery. > > > > > > Want to start a pool on the nervous breakdown?

Response:

"Sherry" <sstof…@inreach.com> wrote in message

news:vO1v8.2700$262.317334583@news.inreach.com… > Yikes, your list is rather interesting!  The mother-in-law one I can relate > to (mine lives next door long story), the cyst on the ovary I can relate to, > but only time I had milk was after delivery of my son, the headaches I can > relate to also as I can’t remember too many headache free days in years and > years. > I think that we should just meet in Bev’s garden and to heck with Belvue! > They wouldn’t know what to do with all of us anyway.

Bellevue, would put us all in separate rooms! Throw away the keys. We better not chance it. Lurking! Wende

Response:

"Paula Love" <paulalo…@comcast.net> wrote in message

news:B8E2115B.62A6%paulalove3@comcast.net… > Today I have sinus pressure so bad i can barely see > Tomorrow I go to my onocologist and try to convince him to take out the > problem > Tomorrow night i go to the russian circus with mother in law (we do NOT get > along)

But – for the Russian Circus, isn’t it worth the aggrivation?  Is it Circus Moscow? > The 26th I go to my new kidney doc, have no clue what hes gonna do, trying > to find out why i got protein and human skin in my urine. (OH happy bday to > me then)

I imagine I’ll be up to *here* with MOTH and his post op traumas, so HAPPY BIRTHDAY in advance. > THEN May 24rd i finally go to my eye doc to see if that is why i have had a > headache since last june. > And in the middle of all this one of the cycts on my ovaries bursts and im > producing milk like i just had a baby.

Yipes! > You get the room at belvue and Ill bunk with you!!!!

Maybe I’d better order a suite<g>?

Response:

For some reason today is *dismal* – maybe the chilly weather. May I be positive tomorrow, instead, please? Have a fantastic trip – wish I were going along. "Sherry" <sstof…@inreach.com> wrote in message

news:4a0v8.2695$FR1.316287092@news.inreach.com… – Hide quoted text — Show quoted text -> I can relate to the not a positive day but I know that your attitude also > has lots to do with it also!  So keep positive thoughts. All will be fine. > MOTH will come thru with flying colors and not be as bad a pt as you are > thinking.  But sure sounds like a busy week.  Maybe good to have it all > happening at once. > I am flaring and just in time for my trip.  Went to the doc yesterday and he > is talking about Methotrexate.  Not wanting to start it just before I leave > so will rediscuss after I get back Till then will just keep everything the > same and hope for the best. > Darn it can’t make up its mind if it is winter, spring or summer in this > neck of the woods.  Had gusts of wind 40-50 mph hour day before yesterday > (thinned the plums on the fruitless plum tree what a mess and blew about 4 > big rigs over in the western part of our county), snow as low as Sonora > (about 40 miles "up" the road from here) and to think a few days ago I was > in shorts and a tank top. > Will be thinking of you and keeping you both in my prayers. > Hugs, > Sherry > "J Rogow" <JRo…@ridgenet.net> wrote in message > news:a9htuv025ur@enews4.newsguy.com… > > Thanks, I guess this isn’t a very positive day. > > "Sherry" <sstof…@inreach.com> wrote in message > > news:A7_u8.2683$Ty1.315091056@news.inreach.com… > > > Judith,  Everything will be fine!  You like the new doc, the tests may > > only > > > confirm what you already know so no big surprises there I’m sure. You > > know > > > your body and how you feel and you stay up on what everything might > > be.  The > > > head knot removal will go just fine and so will the MOTH’s surgery! > > Just > > > don’t cause yourself more "pain" by worry.  One day at a time, smile > > and a > > > positive outlook!  NO Breakdown! > > > Hugs, > > > Sherry > > > "J Rogow" <JRo…@ridgenet.net> wrote in message > > > news:a9hni401nu6@enews4.newsguy.com… > > > > Wednesday is my second appointment with Dr. H.  I’ll get the results > > > > of the blood work, and we’ll decide on a treatment plan. > > > > Also, Saturday is the big social event – no stress *there*<g>. > > > > Monday I have the head knots removed. > > > > Thursday is MOTH’s surgery. > > > > Want to start a pool on the nervous breakdown?

Response:

Hi Judith, Don’t worry about not being positve. We all deal with our own sh**, and it is as rotten for one, as it is for another. I don’t feel all that +today either, even though K seems to be feeling better. It is cold and dreary here too. Maybe that’s why. BJ-in tune with you today "J Rogow" <JRo…@ridgenet.net> wrote in message

news:a9i9r602v2s@enews4.newsguy.com… – Hide quoted text — Show quoted text -> For some reason today is *dismal* – maybe the chilly weather. > May I be positive tomorrow, instead, please? > Have a fantastic trip – wish I were going along. > "Sherry" <sstof…@inreach.com> wrote in message > news:4a0v8.2695$FR1.316287092@news.inreach.com… > > I can relate to the not a positive day but I know that your attitude > also > > has lots to do with it also!  So keep positive thoughts. All will be > fine. > > MOTH will come thru with flying colors and not be as bad a pt as you > are > > thinking.  But sure sounds like a busy week.  Maybe good to have it > all > > happening at once. > > I am flaring and just in time for my trip.  Went to the doc yesterday > and he > > is talking about Methotrexate.  Not wanting to start it just before I > leave > > so will rediscuss after I get back Till then will just keep everything > the > > same and hope for the best. > > Darn it can’t make up its mind if it is winter, spring or summer in > this > > neck of the woods.  Had gusts of wind 40-50 mph hour day before > yesterday > > (thinned the plums on the fruitless plum tree what a mess and blew > about 4 > > big rigs over in the western part of our county), snow as low as > Sonora > > (about 40 miles "up" the road from here) and to think a few days ago I > was > > in shorts and a tank top. > > Will be thinking of you and keeping you both in my prayers. > > Hugs, > > Sherry > > "J Rogow" <JRo…@ridgenet.net> wrote in message > > news:a9htuv025ur@enews4.newsguy.com… > > > Thanks, I guess this isn’t a very positive day. > > > "Sherry" <sstof…@inreach.com> wrote in message > > > news:A7_u8.2683$Ty1.315091056@news.inreach.com… > > > > Judith,  Everything will be fine!  You like the new doc, the tests > may > > > only > > > > confirm what you already know so no big surprises there I’m sure. > You > > > know > > > > your body and how you feel and you stay up on what everything > might > > > be.  The > > > > head knot removal will go just fine and so will the MOTH’s > surgery! > > > Just > > > > don’t cause yourself more "pain" by worry.  One day at a time, > smile > > > and a > > > > positive outlook!  NO Breakdown! > > > > Hugs, > > > > Sherry > > > > "J Rogow" <JRo…@ridgenet.net> wrote in message > > > > news:a9hni401nu6@enews4.newsguy.com… > > > > > Wednesday is my second appointment with Dr. H.  I’ll get the > results > > > > > of the blood work, and we’ll decide on a treatment plan. > > > > > Also, Saturday is the big social event – no stress *there*<g>. > > > > > Monday I have the head knots removed. > > > > > Thursday is MOTH’s surgery. > > > > > Want to start a pool on the nervous breakdown?

Response:

Yikes, your list is rather interesting!  The mother-in-law one I can relate to (mine lives next door long story), the cyst on the ovary I can relate to, but only time I had milk was after delivery of my son, the headaches I can relate to also as I can’t remember too many headache free days in years and years. I think that we should just meet in Bev’s garden and to heck with Belvue! They wouldn’t know what to do with all of us anyway. Sherry "Paula Love" <paulalo…@comcast.net> wrote in message

news:B8E2115B.62A6%paulalove3@comcast.net… – Hide quoted text — Show quoted text -> Today I have sinus pressure so bad i can barely see > Tomorrow I go to my onocologist and try to convince him to take out the > problem > Tomorrow night i go to the russian circus with mother in law (we do NOT get > along) > The 26th I go to my new kidney doc, have no clue what hes gonna do, trying > to find out why i got protein and human skin in my urine. (OH happy bday to > me then) > THEN May 24rd i finally go to my eye doc to see if that is why i have had a > headache since last june. > And in the middle of all this one of the cycts on my ovaries bursts and im > producing milk like i just had a baby. > You get the room at belvue and Ill bunk with you!!!! > Paula from AL > > From: "J Rogow" <JRo…@ridgenet.net> > > Organization: http://extra.newsguy.com > > Newsgroups: alt.support.lupus > > Date: Tue, 16 Apr 2002 10:42:34 -0700 > > Subject: ArrrgggH! > > Wednesday is my second appointment with Dr. H.  I’ll get the results > > of the blood work, and we’ll decide on a treatment plan. > > Also, Saturday is the big social event – no stress *there*<g>. > > Monday I have the head knots removed. > > Thursday is MOTH’s surgery. > > Want to start a pool on the nervous breakdown?

Response:

Today I have sinus pressure so bad i can barely see Tomorrow I go to my onocologist and try to convince him to take out the problem Tomorrow night i go to the russian circus with mother in law (we do NOT get along) The 26th I go to my new kidney doc, have no clue what hes gonna do, trying to find out why i got protein and human skin in my urine. (OH happy bday to me then) THEN May 24rd i finally go to my eye doc to see if that is why i have had a headache since last june. And in the middle of all this one of the cycts on my ovaries bursts and im producing milk like i just had a baby. You get the room at belvue and Ill bunk with you!!!! Paula from AL – Hide quoted text — Show quoted text -> From: "J Rogow" <JRo…@ridgenet.net> > Organization: http://extra.newsguy.com > Newsgroups: alt.support.lupus > Date: Tue, 16 Apr 2002 10:42:34 -0700 > Subject: ArrrgggH! > Wednesday is my second appointment with Dr. H.  I’ll get the results > of the blood work, and we’ll decide on a treatment plan. > Also, Saturday is the big social event – no stress *there*<g>. > Monday I have the head knots removed. > Thursday is MOTH’s surgery. > Want to start a pool on the nervous breakdown?

Response:

On Tue, 16 Apr 2002 10:42:34 -0700, "J Rogow" <JRo…@ridgenet.net> wrote: >Wednesday is my second appointment with Dr. H.  I’ll get the results >of the blood work, and we’ll decide on a treatment plan. >Also, Saturday is the big social event – no stress *there*<g>. >Monday I have the head knots removed. >Thursday is MOTH’s surgery. >Want to start a pool on the nervous breakdown?

I’ll take a piece of that action!  Put me down for next Saturday at 9:00 AM.

Response:

I can relate to the not a positive day but I know that your attitude also has lots to do with it also!  So keep positive thoughts. All will be fine. MOTH will come thru with flying colors and not be as bad a pt as you are thinking.  But sure sounds like a busy week.  Maybe good to have it all happening at once. I am flaring and just in time for my trip.  Went to the doc yesterday and he is talking about Methotrexate.  Not wanting to start it just before I leave so will rediscuss after I get back Till then will just keep everything the same and hope for the best. Darn it can’t make up its mind if it is winter, spring or summer in this neck of the woods.  Had gusts of wind 40-50 mph hour day before yesterday (thinned the plums on the fruitless plum tree what a mess and blew about 4 big rigs over in the western part of our county), snow as low as Sonora (about 40 miles "up" the road from here) and to think a few days ago I was in shorts and a tank top. Will be thinking of you and keeping you both in my prayers. Hugs, Sherry "J Rogow" <JRo…@ridgenet.net> wrote in message

news:a9htuv025ur@enews4.newsguy.com… – Hide quoted text — Show quoted text -> Thanks, I guess this isn’t a very positive day. > "Sherry" <sstof…@inreach.com> wrote in message > news:A7_u8.2683$Ty1.315091056@news.inreach.com… > > Judith,  Everything will be fine!  You like the new doc, the tests may > only > > confirm what you already know so no big surprises there I’m sure.  You > know > > your body and how you feel and you stay up on what everything might > be.  The > > head knot removal will go just fine and so will the MOTH’s surgery! > Just > > don’t cause yourself more "pain" by worry.  One day at a time, smile > and a > > positive outlook!  NO Breakdown! > > Hugs, > > Sherry > > "J Rogow" <JRo…@ridgenet.net> wrote in message > > news:a9hni401nu6@enews4.newsguy.com… > > > Wednesday is my second appointment with Dr. H.  I’ll get the results > > > of the blood work, and we’ll decide on a treatment plan. > > > Also, Saturday is the big social event – no stress *there*<g>. > > > Monday I have the head knots removed. > > > Thursday is MOTH’s surgery. > > > Want to start a pool on the nervous breakdown?

Response:

Thanks, I guess this isn’t a very positive day. "Sherry" <sstof…@inreach.com> wrote in message

news:A7_u8.2683$Ty1.315091056@news.inreach.com… – Hide quoted text — Show quoted text -> Judith,  Everything will be fine!  You like the new doc, the tests may only > confirm what you already know so no big surprises there I’m sure.  You know > your body and how you feel and you stay up on what everything might be.  The > head knot removal will go just fine and so will the MOTH’s surgery! Just > don’t cause yourself more "pain" by worry.  One day at a time, smile and a > positive outlook!  NO Breakdown! > Hugs, > Sherry > "J Rogow" <JRo…@ridgenet.net> wrote in message > news:a9hni401nu6@enews4.newsguy.com… > > Wednesday is my second appointment with Dr. H.  I’ll get the results > > of the blood work, and we’ll decide on a treatment plan. > > Also, Saturday is the big social event – no stress *there*<g>. > > Monday I have the head knots removed. > > Thursday is MOTH’s surgery. > > Want to start a pool on the nervous breakdown?

Response:

Social Butterfly . . . ME?!?!?!? Good gads, my social life is almost non-existent. Your bet is duly noted, I think it will be a bit longer than that, if only because he will sleep the first 24 hours. Thanks for the good wishes, I’ll remember them when he is cutting into my scalp. Judith, apprehensive in SoCold "BJ" <B…@sk.nojunk.ca> wrote in message

news:uboren28n5tb4a@corp.supernews.com… – Hide quoted text — Show quoted text -> My bet is 12hours after MOTH gets home after his surgery or when he has > asked you to wait on him for the 30th time. Which ever comes sooner. Good > luck with Dr. H., and the knot removal. You will do fine Saturday. You are > our social butterfly anyway. > BJ-Sk. > "J Rogow" <JRo…@ridgenet.net> wrote in message > news:a9hni401nu6@enews4.newsguy.com… > > Wednesday is my second appointment with Dr. H.  I’ll get the results > > of the blood work, and we’ll decide on a treatment plan. > > Also, Saturday is the big social event – no stress *there*<g>. > > Monday I have the head knots removed. > > Thursday is MOTH’s surgery. > > Want to start a pool on the nervous breakdown?

Response:

Judith,  Everything will be fine!  You like the new doc, the tests may only confirm what you already know so no big surprises there I’m sure.  You know your body and how you feel and you stay up on what everything might be.  The head knot removal will go just fine and so will the MOTH’s surgery!  Just don’t cause yourself more "pain" by worry.  One day at a time, smile and a positive outlook!  NO Breakdown! Hugs, Sherry "J Rogow" <JRo…@ridgenet.net> wrote in message

news:a9hni401nu6@enews4.newsguy.com… – Hide quoted text — Show quoted text -> Wednesday is my second appointment with Dr. H.  I’ll get the results > of the blood work, and we’ll decide on a treatment plan. > Also, Saturday is the big social event – no stress *there*<g>. > Monday I have the head knots removed. > Thursday is MOTH’s surgery. > Want to start a pool on the nervous breakdown?

Response:

My bet is 12hours after MOTH gets home after his surgery or when he has asked you to wait on him for the 30th time. Which ever comes sooner. Good luck with Dr. H., and the knot removal. You will do fine Saturday. You are our social butterfly anyway. BJ-Sk. "J Rogow" <JRo…@ridgenet.net> wrote in message

news:a9hni401nu6@enews4.newsguy.com… – Hide quoted text — Show quoted text -> Wednesday is my second appointment with Dr. H.  I’ll get the results > of the blood work, and we’ll decide on a treatment plan. > Also, Saturday is the big social event – no stress *there*<g>. > Monday I have the head knots removed. > Thursday is MOTH’s surgery. > Want to start a pool on the nervous breakdown?

Response:

Wednesday is my second appointment with Dr. H.  I’ll get the results of the blood work, and we’ll decide on a treatment plan. Also, Saturday is the big social event – no stress *there*<g>. Monday I have the head knots removed. Thursday is MOTH’s surgery. Want to start a pool on the nervous breakdown?

Response:

Question:

My first big lesson in Lupus was: ANYONE who tells you what to expect is a first-class idiot!!! I think my Rheumy would be the first to tell you that she is dumbfounded by the complications that I have had. I never know what to expect day to day. I never envisioned taking the type and number of drugs that I take everyday. I never thought I’d say that I’d rather sleep than take a walk, but I do. But most importantly…I survive AND everyday I find something to smile about. Sonja – Hide quoted text — Show quoted text -Paula Love <paulalo…@comcast.net> wrote in message <news:B8E07A26.61F9%paulalove3@comcast.net>… > Ya I know its a loaded question but when a doc says you should have expected > this or that with lupus its kinda irratating!! So the million dollar > question is, What can you expect with lupus? Whats gonna happen? what can be > done about it? > Now as someone that has dealt with this for a few years (not telling how > many!) I know its different for each person and level of lupus activity. But > if you had to how would you answer those questions?? > Thanx for not shooting the curious! (lol) > Paula from AL

Response:

Expect the worse and than be grateful it isn’t happening at the moment! Lupus can attack almost any part of your body and wreck havoc! Mostly we are just sick and tired of being sick and tired! Bev "Paula Love" <paulalo…@comcast.net> wrote in message

news:B8E07A26.61F9%paulalove3@comcast.net… – Hide quoted text — Show quoted text -> Ya I know its a loaded question but when a doc says you should have expected > this or that with lupus its kinda irratating!! So the million dollar > question is, What can you expect with lupus? Whats gonna happen? what can be > done about it? > Now as someone that has dealt with this for a few years (not telling how > many!) I know its different for each person and level of lupus activity. But > if you had to how would you answer those questions?? > Thanx for not shooting the curious! (lol) > Paula from AL

Response:

Ya I know its a loaded question but when a doc says you should have expected this or that with lupus its kinda irratating!! So the million dollar question is, What can you expect with lupus? Whats gonna happen? what can be done about it? Now as someone that has dealt with this for a few years (not telling how many!) I know its different for each person and level of lupus activity. But if you had to how would you answer those questions?? Thanx for not shooting the curious! (lol) Paula from AL

Response:

Hi Paula, You just never know what to expect. Nobody can answer that because of all the unknowns. So far I don’t have kidney involvement, others do. I have a lot of blood problems. You may never develop that. I guess you just have to take each thing as it comes alone. Deal with it when and if you get it. Then you find out the treatment options, and make a decision. I hope this isn’t a stupid answer to your question. I don’t know how else to explain it. BJ-in windy Sk. "Paula Love" <paulalo…@comcast.net> wrote in message

news:B8E07A26.61F9%paulalove3@comcast.net… – Hide quoted text — Show quoted text -> Ya I know its a loaded question but when a doc says you should have expected > this or that with lupus its kinda irratating!! So the million dollar > question is, What can you expect with lupus? Whats gonna happen? what can be > done about it? > Now as someone that has dealt with this for a few years (not telling how > many!) I know its different for each person and level of lupus activity. But > if you had to how would you answer those questions?? > Thanx for not shooting the curious! (lol) > Paula from AL

Response:

Question:

Hi Everyone, I hope the weekend was a good one. I have a question about my blood tests. What is the MCV, and the MCH ? What is the significance of reading that are above the normal range? My hemaglobin is in the low range of normal. Just thought I would mention this, in case it is important along with the other readings. You are all so smart. I know someone will have an answer. I will report on trip to see FIL and the dog illness later. I am so tired that I had trouble holding my arms up to do my hair. I had to go to the city today for my B12 and blood test. BJ-gathering blankets and teddies for sleep

Response:

BJ. The MCV is mean corpuscular volume: The MCH mean corpuscular hemoglobin: MCHC mean corpuscular hemoglobin concentration: But I do not know the significance of them being in the above normal range. Glad that you are home.  Get some rest and then report in on the trip!!!! Hugs, Sherry "BJ" <B…@sk.nojunk.ca> wrote in message

news:uak43e3t5m75ff@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Everyone, > I hope the weekend was a good one. I have a question about my blood tests. > What is the MCV, and the MCH ? What is the significance of reading that are > above the normal range? My hemaglobin is in the low range of normal. Just > thought I would mention this, in case it is important along with the other > readings. You are all so smart. I know someone will have an answer. > I will report on trip to see FIL and the dog illness later. I am so tired > that I had trouble holding my arms up to do my hair. I had to go to the city > today for my B12 and blood test. > BJ-gathering blankets and teddies for sleep

Response:

Hi BJ Welcome back and hope you’re resting comfy with blankets and teddies. Missed ya MCV and MCH and hemoglobin are mentioned here  http://www.mtio.com/lupus/lfalt1.htm what it all means I don’t know. MCV mentions B12. J – hoping someone else can fill you in. – Hide quoted text — Show quoted text -BJ wrote: > Hi Everyone, > I hope the weekend was a good one. I have a question about my blood tests. > What is the MCV, and the MCH ? What is the significance of reading that are > above the normal range? My hemaglobin is in the low range of normal.

Response:

BJ, welcome back, funny thing was, I had no access to the Group, and did not know you were gone. J gave a good site as to what is normal and what not in blood tests. Just read that and I was told that mine are like yours.  NOT to worry, was told that it had to do with hydration in your body also.  LAY MAN’s term.  How much water you got in there .  LOL. So as long as it is not out of wack big time, don’t worry about it. Sometimes meds can also give a false reading and if the reading is right, then the doctors have to look at OTHER blood tests to determine IF something is hay wire.  YOUR is ok,  only again, if it is WAY OUT of wack along with other stuff… good to be here again janers

Response:

Hi J, Thank you. I told my husband that if I posted I knew you would have a website in no time. I went there and do understand the meaning. The number of megaloblastic red cells is increasing. I am just not sure why that would be happening. I have pernicous anemia, but am getting treatment. Perhaps I need my shots more often. I see my rheumy this month, so  I will ask her. You are a peach.    BJ-in awe of your brain "J" <jwoot…@execulink.com> wrote in message

news:3CAA458A.F11ED193@execulink.com… – Hide quoted text — Show quoted text -> Hi BJ > Welcome back and hope you’re resting comfy with blankets and teddies. > Missed ya > MCV and MCH and hemoglobin are mentioned here >  http://www.mtio.com/lupus/lfalt1.htm > what it all means I don’t know. MCV mentions B12. > J – hoping someone else can fill you in. > BJ wrote: > > Hi Everyone, > > I hope the weekend was a good one. I have a question about my blood tests. > > What is the MCV, and the MCH ? What is the significance of reading that are > > above the normal range? My hemaglobin is in the low range of normal.

Response:

In article <OCoq8.1496$G5.159233…@news.inreach.com>, "Sherry" <sstof…@inreach.com> wrote: > BJ. > The MCV is mean corpuscular volume: > The MCH mean corpuscular hemoglobin: > MCHC mean corpuscular hemoglobin concentration: > But I do not know the significance of them being in the above normal range.

Measures coagulation rates. High numbers *could* but not definitely mean a higher risk for DVT, PE and other clotting problems. There’s another test that would determine that more accurately. Ask the doctor to be sure – I’m just a person who has a lot of tests done.

Response:

Question:

Big hugs for each of you. PLEASE make the neuro take a more thorough history tomorrow, or ask him if he really wants you as patients. You may not have a lot to lose there. My GP washed his hands of my headaches the other day, and told me to ditch my neuro and get a new one, so I know how disconnected and unsupported you feel right now. Make sure that doctor hears you tomorrow; make him listen. You and your dh are articulate, intelligent medical consumers, and don’t deserve the casual treatment he gave the dh. And whine all you want – I was whining here last night. We’re the ones who understand WHY you’re whining. guys get some real help from the guy tomorrow. Ginnie and  =^..^= Clooney – Hide quoted text — Show quoted text – This is that worst it’s been for Bernie in years.  You know he’s a cluster head. he’s been on the lithium, the depokate, too for past two years, gained 50 or 60 pounds on that. Our GP has washed his hands of us, as we knew he would, been 7 years. This neuro I’m not pleased with, 2nd appt istomorrow.  This neuro didn’t even ask for history, nor do any examination on the dh. Now I’m trying to get into Philly center (thomas Jefferson HA clinic) with the guys Dr. Goadsby recommended.  I think I had 20 hours sleep last week and the dh about 15…I’m exhausted..he’s worried about my lupus and lack of sleep I’m worried about him in suicide mode (but I don’t think he’ll go there). He was to go to Spain this week on business, but thank the lord, his boss is understanding and said Okay, what can we do to help, that in itself is unique. I’m just venting…I’m so tired, so is he…both of us wanna jump off the roof, and now we have a 2 story roof and not just a rancher (one story)…sigh.  I know we’ll get thru it we always have..but yes I’m whining…I have his son’s wedding coming up, a trip to hawaii (that dh says won’t go to, because of the clusters, that sucks big time), a contracter I’m dealing with at my fathers homem and a job that we’ve been give WARN notices on…I’m not sure who is gonna commit hari kari first!!! Just a few hugs you all…I need it big time…I’m tied of crying myself to sleep after his Cluster has sent him to bed.  So much for the whine of the night, anyone got a good unused white burnguny from france?  I don’t have the headaches but I can drink it…but it’s a small consulation…sigh. love and hugs wishing you pain free days and nights — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _          (       / )       |  ) ) _,,,/ (,,_      /, . ‘`~   ~-.  ;-;;,_     |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

With oodles of cat purrs, meatloaf meditations and prayers. Hang in there – you both *will* prevail and come through this. *hugs* helen s Waffles, Francis and Marble Get rid of the suckers before sending a reply! Any speliong mistakes aR the result of my cats sitting on the keyboaRRRDdd

Response:

This is that worst it’s been for Bernie in years.  You know he’s a cluster head. he’s been on the lithium, the depokate, too for past two years, gained 50 or 60 pounds on that. Our GP has washed his hands of us, as we knew he would, been 7 years. This neuro I’m not pleased with, 2nd appt istomorrow.  This neuro didn’t even ask for history, nor do any examination on the dh. Now I’m trying to get into Philly center (thomas Jefferson HA clinic) with the guys Dr. Goadsby recommended.  I think I had 20 hours sleep last week and the dh about 15…I’m exhausted..he’s worried about my lupus and lack of sleep I’m worried about him in suicide mode (but I don’t think he’ll go there). He was to go to Spain this week on business, but thank the lord, his boss is understanding and said Okay, what can we do to help, that in itself is unique. I’m just venting…I’m so tired, so is he…both of us wanna jump off the roof, and now we have a 2 story roof and not just a rancher (one story)…sigh.  I know we’ll get thru it we always have..but yes I’m whining…I have his son’s wedding coming up, a trip to hawaii (that dh says won’t go to, because of the clusters, that sucks big time), a contracter I’m dealing with at my fathers homem and a job that we’ve been give WARN notices on…I’m not sure who is gonna commit hari kari first!!! Just a few hugs you all…I need it big time…I’m tied of crying myself to sleep after his Cluster has sent him to bed.  So much for the whine of the night, anyone got a good unused white burnguny from france?  I don’t have the headaches but I can drink it…but it’s a small consulation…sigh. love and hugs wishing you pain free days and nights — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _                (       / )       |  ) ) _,,,/ (,,_                /, . ‘`~   ~-.  ;-;;,_                 |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

I’m a newbie here, and don’t know you, Mary, but I still wish you and dh some sleep, first of all.  Then you can try to deal with the headaches and the lupus.  Or maybe, get rid of the headaches so sleep will come.  My heart goes out to you both. Jenni

Response:

Mary.. I just hate to hear that you’re having such a bad time.  I’ve already read Bob’s note to you and he has some great information — I hope it helps. Keep writing to us.  We’ve got great big arms here and give nice warm hugs whenever they’re needed. ((((((((((((((((((((((((((Mary and DH)))))))))))))))))))))))))))) Liz

– Hide quoted text — Show quoted text – This is that worst it’s been for Bernie in years.  You know he’s a cluster head. he’s been on the lithium, the depokate, too for past two years, gained 50 or 60 pounds on that. Our GP has washed his hands of us, as we knew he would, been 7 years. This neuro I’m not pleased with, 2nd appt istomorrow.  This neuro didn’t even ask for history, nor do any examination on the dh. Now I’m trying to get into Philly center (thomas Jefferson HA clinic) with the guys Dr. Goadsby recommended.  I think I had 20 hours sleep last week and the dh about 15…I’m exhausted..he’s worried about my lupus and lack of sleep I’m worried about him in suicide mode (but I don’t think he’ll go there). He was to go to Spain this week on business, but thank the lord, his boss is understanding and said Okay, what can we do to help, that in itself is unique. I’m just venting…I’m so tired, so is he…both of us wanna jump off the roof, and now we have a 2 story roof and not just a rancher (one story)…sigh.  I know we’ll get thru it we always have..but yes I’m whining…I have his son’s wedding coming up, a trip to hawaii (that dh says won’t go to, because of the clusters, that sucks big time), a contracter I’m dealing with at my fathers homem and a job that we’ve been give WARN notices on…I’m not sure who is gonna commit hari kari first!!! Just a few hugs you all…I need it big time…I’m tied of crying myself to sleep after his Cluster has sent him to bed.  So much for the whine of the night, anyone got a good unused white burnguny from france?  I don’t have the headaches but I can drink it…but it’s a small consulation…sigh. love and hugs wishing you pain free days and nights — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _          (       / )       |  ) ) _,,,/ (,,_      /, . ‘`~   ~-.  ;-;;,_     |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

A big hug from me too! I know how it is to be so tired and not well yourself and on the same time fighting to make life better for your loved one(s). For me that part is over now but I remember how exausted and sometimes angry you could be. I do hope you can get some help now – I`ll pray for that – and if I had a big bottle of French burgundy I would send it somehow. Alas France is very far away for the moment. Love and Peace – Alexandra

– Hide quoted text — Show quoted text – This is that worst it’s been for Bernie in years.

Response:

((((((((((((((Mary & Bernie)))))))))))))))) Mary, i dunno if admiration goes anywhere with you, but i admire you greatly….always have.  It’s gotta be tiring….being someone on whom people trust, look to for advice, look to for getting "everything" done…that is one tiring job.  Even Superman can’t handle all that….but then again, Superman doesn’t have a newsgroup! The days are tiring.  The weeks, the months, the hours…..all seem to drudge on occasion. You are loved.  You are warmly regarded.  Sleep in peace, and we can gab later…. Deep peace on you & Bernie, Lavon – Hide quoted text — Show quoted text – This is that worst it’s been for Bernie in years.  You know he’s a cluster head. he’s been on the lithium, the depokate, too for past two years, gained 50 or 60 pounds on that. Our GP has washed his hands of us, as we knew he would, been 7 years. This neuro I’m not pleased with, 2nd appt istomorrow.  This neuro didn’t even ask for history, nor do any examination on the dh. Now I’m trying to get into Philly center (thomas Jefferson HA clinic) with the guys Dr. Goadsby recommended.  I think I had 20 hours sleep last week and the dh about 15…I’m exhausted..he’s worried about my lupus and lack of sleep I’m worried about him in suicide mode (but I don’t think he’ll go there). He was to go to Spain this week on business, but thank the lord, his boss is understanding and said Okay, what can we do to help, that in itself is unique. I’m just venting…I’m so tired, so is he…both of us wanna jump off the roof, and now we have a 2 story roof and not just a rancher (one story)…sigh.  I know we’ll get thru it we always have..but yes I’m whining…I have his son’s wedding coming up, a trip to hawaii (that dh says won’t go to, because of the clusters, that sucks big time), a contracter I’m dealing with at my fathers homem and a job that we’ve been give WARN notices on…I’m not sure who is gonna commit hari kari first!!! Just a few hugs you all…I need it big time…I’m tied of crying myself to sleep after his Cluster has sent him to bed.  So much for the whine of the night, anyone got a good unused white burnguny from france?  I don’t have the headaches but I can drink it…but it’s a small consulation…sigh. love and hugs wishing you pain free days and nights — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _          (       / )       |  ) ) _,,,/ (,,_      /, . ‘`~   ~-.  ;-;;,_     |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

Thank you all so very much for the love and support.  You have no idea how wonderful it feels to read your response (even if it makes me cry, it gets out a bit of pent up stress . And to all of you who sent personal emails thank you so much.  I’m gonna keep them and then research all the information you have sent and make sure the dh reads it as well! I’ll try to reply soon! He appreciates your support. We did see the neuro today and we’re going to keep him on the meds he was on (going of the lithium was NOT a good thing for bernie), plus up the topamax to 200 mgs day.  And Bernie said, "GOD FORBID, lets try the prednisone again!"  He really hates that stuff but is gonna do it anyway (that’s desperation).  We decided to stick with the imitrex as the Axert Formulary with our insurance only allows 6 pills a month and we still have to pay $30 for those…and bernie didn’t notice much difference. So the doctor did give us 100 mgs imitrex tabs (dh usually has 50 mgs), he wrote 9 and I said no insurance will give us 18, so doc changed the script. Bernie has decided the stadol goes down the toilet (literally), he really doesn’t like that stuff, really made him ill and too funky feeling.  Any Inhalent is wrong as his nose gets very stuffed.  And the DH is really against any narcotic drug (that’s just him), especially after the stadol experience LOL.  It’s not fun gurking when you are at a kip 10.  I told him if he banged bowl with his head that wasn’t a good Idea, if he broke it he’d have to replace it LOL (we do try to keep sense of humor rather than yelling at each other). And yes we have 02 tanks in this house out the kazoo, and bernie carries 2 E tanks in his car, that’s his first line of defense as an abortive and usually the most constant in results with imitrex in tow. So basically the neuro is going the standard routes, and bernie’s not into experimental right now.  But he definitely wants to try the Jefferson Clinic. So we are trying to get into the Jefferson clinic, I have one ASHMer trying to help, and I’ll see what I can do myself and grab others for help as well.  Dr. Young seems to be the one to see, but Young or Silberstein. As they are partners I’m sure consult each other. Again thank you all for your great love and support I can’t tell you how much it means! And I’ll keep you informed as we progress on a new journey! hugs, wishing you all pain free days and nights! — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _                (       / )       |  ) ) _,,,/ (,,_                /, . ‘`~   ~-.  ;-;;,_                 |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

Mary/Bernie, Sounds like a plan to me. I know how the Stadol can be. It did help me so I continued to use it, even though it always made me VERY cranky. So, whether i had the cluster or the stadol, everyone wanted to stay away from me and leave me alone. There really isn’t a *good* narcotic for clusters, as they come and go usually within an hour. I had the best luck with methadone so maybe the long acting ones are the best. The problem there is that it takes such a large dose to even touch the pain, you then need to decide if you want to be heavily drugged 24 hours a day. In between the pain, the narcotics will effect you more, but when I was getting 12 attacks a day, there wasn’t much *down time*! I always hated the prednisone too! After about three days, I felt like I was a tuna, packed in oil. The large doses that are required for relief aren’t fun at all. Just looking at the family photo albums, we can always tell when I was on prednisone. I’m the one that looks like a chipmunk. It would allow me to catch my breath and get a few days of sleep. Best of luck at jefferson! When you have questions about the different types of surgery, rattle my cage. BobW

– Hide quoted text — Show quoted text – Thank you all so very much for the love and support.  You have no idea how wonderful it feels to read your response (even if it makes me cry, it gets out a bit of pent up stress . And to all of you who sent personal emails thank you so much.  I’m gonna keep them and then research all the information you have sent and make sure the dh reads it as well! I’ll try to reply soon! He appreciates your support. We did see the neuro today and we’re going to keep him on the meds he was on (going of the lithium was NOT a good thing for bernie), plus up the topamax to 200 mgs day.  And Bernie said, "GOD FORBID, lets try the prednisone again!"  He really hates that stuff but is gonna do it anyway (that’s desperation).  We decided to stick with the imitrex as the Axert Formulary with our insurance only allows 6 pills a month and we still have to pay $30 for those…and bernie didn’t notice much difference. So the doctor did give us 100 mgs imitrex tabs (dh usually has 50 mgs), he wrote 9 and I said no insurance will give us 18, so doc changed the script. Bernie has decided the stadol goes down the toilet (literally), he really doesn’t like that stuff, really made him ill and too funky feeling.  Any Inhalent is wrong as his nose gets very stuffed.  And the DH is really against any narcotic drug (that’s just him), especially after the stadol experience LOL.  It’s not fun gurking when you are at a kip 10.  I told him if he banged bowl with his head that wasn’t a good Idea, if he broke it he’d have to replace it LOL (we do try to keep sense of humor rather than yelling at each other). And yes we have 02 tanks in this house out the kazoo, and bernie carries 2 E tanks in his car, that’s his first line of defense as an abortive and usually the most constant in results with imitrex in tow. So basically the neuro is going the standard routes, and bernie’s not into experimental right now.  But he definitely wants to try the Jefferson Clinic. So we are trying to get into the Jefferson clinic, I have one ASHMer trying to help, and I’ll see what I can do myself and grab others for help as well.  Dr. Young seems to be the one to see, but Young or Silberstein. As they are partners I’m sure consult each other. Again thank you all for your great love and support I can’t tell you how much it means! And I’ll keep you informed as we progress on a new journey! hugs, wishing you all pain free days and nights! — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _          (       / )       |  ) ) _,,,/ (,,_      /, . ‘`~   ~-.  ;-;;,_     |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

Mary and Bernie….. I know exactly where your family is right now. We were in the same position last year at this time. The winter clusters are the worst IMHO. Add the winter doldrums, lack of light, fewer things to enjoy during those brief moments you do have, when you’re actually feeling up to it. It seems that life consists only of pain and working to try to catch up on what you’re not been able to do. A feeling of falling deeper into the abyss with each waking moment. The feeling of complete exhaustion but the fear of knowing what hell, sleep will bring. Yes, I think that Dr. Young is the guy to see if you’re out on the east coast. I would try to make him aware of the emergency situation. I would be sure to mention that Dr. Goadsby sent you to him. I don’t know of his email addy, if he even has one, but several people here have seen Young and may be able to supply that for you. If not, maybe you could locate it online or get it from his office.  I know Bernie isn’t up to trying the shroom treatment. It isn’t the easiest thing to try, even if you want to, when you are in such a terrible cluster cycle. You need to be med free except for O2 and a few others for 5 days to clear the receptors. Opiods *may* be only needed to be stopped for 2-3 days. The jury is still out on that…..I only mention this because if he *is* up for it…let me know. There is a Great pain doc here in the chicago area that was a great deal of help to me. If it looks like it’ll be a while before you see Dr. Young, and would consider seeing him…let me know and I’ll do the prep work for you. There are only two other options that I know of that *may* break a cycle prematurely……DHE IV (3 to 5 days depending on the doc…). I think Dr. Young and his associates offer this but am not sure. (you might want to ask when you speak to his office) I know Dr. Ninan Matthew in Houston does this and has good success with it. The cycle returns after a while for a good percentage (depends who you get the stats from) of people, but at the very least, it should give a much needed break that might allow Bernie to sleep for a while and for all of you to regain some strength. The other, which has worked well for me in the past, is the IV-histamne treatment at the Diamond Headache Clinic. It broke my cycle 3 out of 4 times. I’ve seen it work on many many people. Of course, there are some people that it doesn’t work for, but they are usually at least made, better off than before, allowing the meds to work better. However, this is a 13 day hospital stay. As it is still winter in some places ( I can’t believe we had another near blizzard here today) it might do some good for Bernie to do his "pacing" outside in the cold air. (below 55 degrees for best results). It does abort clusters for many people in shorter than usual times…scares the neighbors sometimes, but what the hell are neighbors for, anyway! I’ll do whatever I can. If you’d like me to speak to Bernie, or you, or both, email your phone #. I’d be happy to discuss any and all options or just lend an ear and shoulder. There is also new research being done, primarily by a doctor in Italy, with a drug called Aricept that is showing good promise. Some doctors here have been willing to discuss the treatment with the Doc in Italy to determine how the treatment is best used and willing to follow the clinical trial regimen. You may want to mention the word Aricept to both Dr. Young and/or the neuro you’re going to see. {{{hugs}}} to you both as I know this is a family affair and please let me know what more I can do. BobW

– Hide quoted text — Show quoted text – This is that worst it’s been for Bernie in years.  You know he’s a cluster head. he’s been on the lithium, the depokate, too for past two years, gained 50 or 60 pounds on that. Our GP has washed his hands of us, as we knew he would, been 7 years. This neuro I’m not pleased with, 2nd appt istomorrow.  This neuro didn’t even ask for history, nor do any examination on the dh. Now I’m trying to get into Philly center (thomas Jefferson HA clinic) with the guys Dr. Goadsby recommended.  I think I had 20 hours sleep last week and the dh about 15…I’m exhausted..he’s worried about my lupus and lack of sleep I’m worried about him in suicide mode (but I don’t think he’ll go there). He was to go to Spain this week on business, but thank the lord, his boss is understanding and said Okay, what can we do to help, that in itself is unique. I’m just venting…I’m so tired, so is he…both of us wanna jump off the roof, and now we have a 2 story roof and not just a rancher (one story)…sigh.  I know we’ll get thru it we always have..but yes I’m whining…I have his son’s wedding coming up, a trip to hawaii (that dh says won’t go to, because of the clusters, that sucks big time), a contracter I’m dealing with at my fathers homem and a job that we’ve been give WARN notices on…I’m not sure who is gonna commit hari kari first!!! Just a few hugs you all…I need it big time…I’m tied of crying myself to sleep after his Cluster has sent him to bed.  So much for the whine of the night, anyone got a good unused white burnguny from france?  I don’t have the headaches but I can drink it…but it’s a small consulation…sigh. love and hugs wishing you pain free days and nights — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _          (       / )       |  ) ) _,,,/ (,,_      /, . ‘`~   ~-.  ;-;;,_     |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

Big hugs and good thoughts winging their way across the miles. Suzie

Response:

Mary, Dr. Young is great.  He is understanding and does not talk down to you.  It took me months to get in for my first appt 3 years ago.  I haven’t been in 17 months (need to take a vacation day to go) but go in on 4/18.  Bad cluster cycle here, too. It is worth the time it takes to get into Jefferson.  They do a psychological test/exam the first appt.  They told me I wasn’t crazy, imagining it, or just making things worse than they were.  I left my neuro in tears when he pretty much told me off about my headaches and made me feel like I was looking for attention a few years ago.  Dawn H. from this group kept telling me to go to Dr. Young, and I finally did.  It was the best thing I did for myself- physically and mentally.  I am sure I would do better if I could get there more often, but it is not that easy.  My husband and I both take a vacation day when I go, so I don’t have to drive.  (I thank God every day for having the wonderful family I have!) Good luck! -Jo in PA

– Hide quoted text — Show quoted text – Thank you all so very much for the love and support.  You have no idea how wonderful it feels to read your response (even if it makes me cry, it gets out a bit of pent up stress . And to all of you who sent personal emails thank you so much.  I’m gonna keep them and then research all the information you have sent and make sure the dh reads it as well! I’ll try to reply soon! He appreciates your support. We did see the neuro today and we’re going to keep him on the meds he was on (going of the lithium was NOT a good thing for bernie), plus up the topamax to 200 mgs day.  And Bernie said, "GOD FORBID, lets try the prednisone again!"  He really hates that stuff but is gonna do it anyway (that’s desperation).  We decided to stick with the imitrex as the Axert Formulary with our insurance only allows 6 pills a month and we still have to pay $30 for those…and bernie didn’t notice much difference. So the doctor did give us 100 mgs imitrex tabs (dh usually has 50 mgs), he wrote 9 and I said no insurance will give us 18, so doc changed the script. Bernie has decided the stadol goes down the toilet (literally), he really doesn’t like that stuff, really made him ill and too funky feeling.  Any Inhalent is wrong as his nose gets very stuffed.  And the DH is really against any narcotic drug (that’s just him), especially after the stadol experience LOL.  It’s not fun gurking when you are at a kip 10.  I told him if he banged bowl with his head that wasn’t a good Idea, if he broke it he’d have to replace it LOL (we do try to keep sense of humor rather than yelling at each other). And yes we have 02 tanks in this house out the kazoo, and bernie carries 2 E tanks in his car, that’s his first line of defense as an abortive and usually the most constant in results with imitrex in tow. So basically the neuro is going the standard routes, and bernie’s not into experimental right now.  But he definitely wants to try the Jefferson Clinic. So we are trying to get into the Jefferson clinic, I have one ASHMer trying to help, and I’ll see what I can do myself and grab others for help as well.  Dr. Young seems to be the one to see, but Young or Silberstein. As they are partners I’m sure consult each other. Again thank you all for your great love and support I can’t tell you how much it means! And I’ll keep you informed as we progress on a new journey! hugs, wishing you all pain free days and nights! — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _          (       / )       |  ) ) _,,,/ (,,_      /, . ‘`~   ~-.  ;-;;,_     |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

the good die young….   and lady I know you and Bernie ain’t been good. <HUGE WINK ((((((((((((((((Mary & Bernie))))))))))))))) Ronnie

HEY….HEY…..HEEEEEEY!!!!! Us cluster people start out good A wink is as good as a nod to a blind man! BobW

Response:

Bob Boo Mary will know what the wink is for….  They both have a thing for back yards    :-) Ronnie

– Hide quoted text — Show quoted text – the good die young….   and lady I know you and Bernie ain’t been good. <HUGE WINK ((((((((((((((((Mary & Bernie))))))))))))))) Ronnie HEY….HEY…..HEEEEEEY!!!!! Us cluster people start out good A wink is as good as a nod to a blind man! BobW

Response:

I have to tell you this one was hard to read.  I feel so bad that things are going South on both of you.    Has Bernie ever tried the Wold method?  I have heard of so many ppl being let go (so to say) because the doctor can’t fix or find out where ppl’s  *pain*  comes from. There is a train coming at you full speed,  best thing to do is lay down in the middle of the track,  have it go over you and then grab on to the back and ride that sucker into a better time and place.   (hope you can figure out what I said)  They say only the good die young….   and lady I know you and Bernie ain’t been good. <HUGE WINK ((((((((((((((((Mary & Bernie))))))))))))))) Ronnie

– Hide quoted text — Show quoted text – This is that worst it’s been for Bernie in years.  You know he’s a cluster head. he’s been on the lithium, the depokate, too for past two years, gained 50 or 60 pounds on that. Our GP has washed his hands of us, as we knew he would, been 7 years. This neuro I’m not pleased with, 2nd appt istomorrow.  This neuro didn’t even ask for history, nor do any examination on the dh. Now I’m trying to get into Philly center (thomas Jefferson HA clinic) with the guys Dr. Goadsby recommended.  I think I had 20 hours sleep last week and the dh about 15…I’m exhausted..he’s worried about my lupus and lack of sleep I’m worried about him in suicide mode (but I don’t think he’ll go there). He was to go to Spain this week on business, but thank the lord, his boss is understanding and said Okay, what can we do to help, that in itself is unique. I’m just venting…I’m so tired, so is he…both of us wanna jump off the roof, and now we have a 2 story roof and not just a rancher (one story)…sigh.  I know we’ll get thru it we always have..but yes I’m whining…I have his son’s wedding coming up, a trip to hawaii (that dh says won’t go to, because of the clusters, that sucks big time), a contracter I’m dealing with at my fathers homem and a job that we’ve been give WARN notices on…I’m not sure who is gonna commit hari kari first!!! Just a few hugs you all…I need it big time…I’m tied of crying myself to sleep after his Cluster has sent him to bed.  So much for the whine of the night, anyone got a good unused white burnguny from france?  I don’t have the headaches but I can drink it…but it’s a small consulation…sigh. love and hugs wishing you pain free days and nights — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _          (       / )       |  ) ) _,,,/ (,,_      /, . ‘`~   ~-.  ;-;;,_     |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

Mary we are moving Monday from right here on the water  (think fog) to inland with 6 acres of yards,  fields and woods.  We are keeping the boat over at the Marina so we will be able to fog-it again  <wink     It will be interesting to see if higher elevation and no humidity has any effect on my head. Hoping for the best for you and Bernie.. Ronnie

– Hide quoted text — Show quoted text – ROTFLMAO.  Well now we are in a neighborhood where back yard is visable to all the neighbors!  heheheheh…or maybe sigh…he has a headache (no nookie!) love and hugs Bob Boo Mary will know what the wink is for….  They both have a thing for back yards    :-) Ronnie the good die young….   and lady I know you and Bernie ain’t been good. <HUGE WINK ((((((((((((((((Mary & Bernie))))))))))))))) Ronnie HEY….HEY…..HEEEEEEY!!!!! Us cluster people start out good A wink is as good as a nod to a blind man! BobW — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _          (       / )       |  ) ) _,,,/ (,,_      /, . ‘`~   ~-.  ;-;;,_     |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

ROTFLMAO.  Well now we are in a neighborhood where back yard is visable to all the neighbors!  heheheheh…or maybe sigh…he has a headache (no nookie!) love and hugs – Hide quoted text — Show quoted text – Bob Boo Mary will know what the wink is for….  They both have a thing for back yards    :-) Ronnie the good die young….   and lady I know you and Bernie ain’t been good. <HUGE WINK ((((((((((((((((Mary & Bernie))))))))))))))) Ronnie HEY….HEY…..HEEEEEEY!!!!! Us cluster people start out good A wink is as good as a nod to a blind man! BobW

– Mary f.        <No Kitty!  it’s MY POT PIE!           _         _                (       / )       |  ) ) _,,,/ (,,_                /, . ‘`~   ~-.  ;-;;,_                 |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (When I wake up, I’m gonna get a CAT scan, "the santa clause")

Response:

Question:

Went back to the heart doc today. He said after doing the 48 hour monitor and stress test it’s looking more and more like lupus is attacking my heart. He says this is very serious(can even be a killer) and wants to do a heart biopsy asap. Said to think about it this week- end and let him know Monday. I don’t know what to do! 5 pieces of my heart cut out sounds so scary. But lupus attacking my heart is scary too. What should I do? SUSAN

Response:

hi! one question do u trust u’r doc? if so do what he thinks is best!!! doc usally don’t like doing unneasusary things…. cathy "susan matthews" <crazyka…@webtv.net> wrote in message

news:15209-3C523BD9-43@storefull-294.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Went back to the heart doc today. He said after doing the 48 hour > monitor and stress test it’s looking more and more like lupus is > attacking my heart. He says this is very serious(can even be a killer) > and wants to do a heart biopsy asap. Said to think about it this week- > end and let him know Monday. I don’t know what to do! 5 pieces of my > heart cut out sounds so scary. But lupus attacking my heart is scary > too. What should I do? > SUSAN

Response:

I agree with cathy!!  if you trust your doc then go for it if not then find some one you do trust!!  belive it or not doc’s hate putting us though that kinda of pain!!  i know mine do!!    Trin "cathy" <chattycathy1…@hotmail.com> wrote in message

news:m%s48.7477$Ki1.721141@typhoon.nyroc.rr.com… – Hide quoted text — Show quoted text -> hi! one question do u trust u’r doc? if so do what he thinks is best!!! doc > usally don’t like doing unneasusary things…. > cathy > "susan matthews" <crazyka…@webtv.net> wrote in message > news:15209-3C523BD9-43@storefull-294.iap.bryant.webtv.net… > > Went back to the heart doc today. He said after doing the 48 hour > > monitor and stress test it’s looking more and more like lupus is > > attacking my heart. He says this is very serious(can even be a killer) > > and wants to do a heart biopsy asap. Said to think about it this week- > > end and let him know Monday. I don’t know what to do! 5 pieces of my > > heart cut out sounds so scary. But lupus attacking my heart is scary > > too. What should I do? > > SUSAN

Response:

Hi Susan, That is a big decision. I can’t tell you what to do. If you have faith in this doctor, than perhaps you should comply. The only thing that I wondered about is the treatment for this. I believe that it would be high dose pred. Could the doctor try the treatment to see if it works? He seems very sure that lupus is the cause anyway. Why not go on that assumption and avoid the surgery? I thought about this for a while before I replied. Somehow this makes some sense to me. I hope it doesn’t cofuse you futher. I will be thinking about you. I know how I agonized over whether or not I should let them do an open lung biopsy. Let us know what you decide. Hugs, BJ "susan matthews" <crazyka…@webtv.net> wrote in message

news:15209-3C523BD9-43@storefull-294.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Went back to the heart doc today. He said after doing the 48 hour > monitor and stress test it’s looking more and more like lupus is > attacking my heart. He says this is very serious(can even be a killer) > and wants to do a heart biopsy asap. Said to think about it this week- > end and let him know Monday. I don’t know what to do! 5 pieces of my > heart cut out sounds so scary. But lupus attacking my heart is scary > too. What should I do? > SUSAN

Response:

I think I’d beg for meds first!!! Ask doc what they do if they decide it is lupus after the biopsy and why can’t you try it before the biopsy? (Oh, I hope that makes sense.) If all else fails then do biopsy. I’m not so sure it is a very horrible thing to have done – but I really don’t want someone sticking needles in my heart. Most biopsies are done with hollow needle things and all they are removing is very tiny little cores. But the heart is one big muscle. Yes, it is serious. And so is the biopsy but they aren’t cutting out big chunks of your heart. I know a Susan Matthews – like that isn’t a common name but did you ever live in York County? The web is making the world a very small place.  :-) Bev "susan matthews" <crazyka…@webtv.net> wrote in message

news:15209-3C523BD9-43@storefull-294.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Went back to the heart doc today. He said after doing the 48 hour > monitor and stress test it’s looking more and more like lupus is > attacking my heart. He says this is very serious(can even be a killer) > and wants to do a heart biopsy asap. Said to think about it this week- > end and let him know Monday. I don’t know what to do! 5 pieces of my > heart cut out sounds so scary. But lupus attacking my heart is scary > too. What should I do? > SUSAN

Response:

Question:

KCat wrote: >   so just a little > capsaicin from those lovely little red peppers was enough to cause > that for me.

Well, I’ll be…you’re a wealth of knowledge KCat.  8 years ago after some bowel bleeding my ex-doc sent me for one of those bowel explorations. Nothing found.  About a month later, I had another salad with very tiny amounts/pieces of red pepper in it.  Same thing happened!   Big to-do because of an allergy eh? 4 years ago, to help with some of my pains, I bought various skin creams, one of which contained capsaicin.  It felt great at first, but woke up soon after with my skin on fire.  Had to treat my arms and shoulders with cold compresses.  What a mistake that experiment was ! J

Response:

On Sun, 27 Jan 2002 23:21:24 GMT, J <jwoot…@rogers.com>  wrote: >KCat wrote: >>   so just a little >> capsaicin from those lovely little red peppers was enough to cause >> that for me. >Well, I’ll be…you’re a wealth of knowledge KCat.  8 years ago after some >bowel bleeding my ex-doc sent me for one of those bowel explorations. >Nothing found.  About a month later, I had another salad with very tiny >amounts/pieces of red pepper in it.  Same thing happened!   Big to-do >because of an allergy eh?

yeah – it creeps up on us… I’d eaten peanut butter since I was able to gum white bread (months old?).  then at 30 it just started getting worse each time I ate it until one night – a night which reminded me of the birthing scene in AlienIII or IV or whatever it was – well, I’ve not eaten it since. Technically I might get away with it once or twice as I do with tree nuts now and then – but eventually it would knock me off my keester again so it’s not worth trying. >4 years ago, to help with some of my pains, I bought various skin creams, >one of which contained capsaicin.  It felt great at first, but woke up >soon after with my skin on fire.  Had to treat my arms and shoulders with >cold compresses.  What a mistake that experiment was !

I made the same mistake.  I was having really nasty paresthesia on my neck and shoulder.  I’d never had that before and I asked my boss (MD-PhD).  She said it wasn’t uncommon – Paresthesia by the way feels like a colony of ants has taken up residence in your skin/muscles.  I still get it now and then when too long in one position.  Anywho – I tried the capsaicin cream, intentionally.  Like you at first it felt warm and soothing.  But by the end of the day my neck and shoulder looked like I’d tried to bake myself to death.  it blistered badly and I never touched the stuff again. for some people it can really help with joint pain because apparently it overwhelms the Substance P (that which in some way controls the pain nerve perception of pain) in the area it is applied. But for lupies it’s a bad idea either as topical treatment or as part of our diet.  I’ll have to go digging but it actually triggers some kind of response directly related to lupus.

Response:

On Tue, 29 Jan 2002 21:42:05 +0000, Andy <a…@kitzbuhel.demon.co.uk> wrote: >In article <4c4e5u4n7lvn9u3sr330pl0ijqdokoe…@4ax.com>, Wes Johnston ><wesle…@msn.com> wrote >>Hi CB, >>If this reaction is from the peppers, then it is more than just an >>feeling of minor discomfort when they are eaten.  It is pain, real >>pain, from the tongue all the way down.  No amount of cold liquid, >>bread, or rice can put out the fire.Then cramps, nausea,  and more >>burning in the gut, and all the way out, if you know what I mean. >One pepper-pain-reliever worth trying is natural yoghurt.

I shoulda thunk of that.  At Indian food restaurants they always give you little bowls of thin, mildly seasoned yoghurt.  It takes the fire off the meal.  And it tastes wonderful too.

Response:

Is the red area around the eyelid margin? This was the case with my son.  It was diagnosed as blepharitis (an eyelid infection).  The treatment we were told to do involved washing his eyelids with a very diluted mixture of baby shampoo and water (a drop of baby shampoo in a cup of water).  We were to dip a cotton ball in the mixture and very gently wipe across his eyelids (with his eyes closed) a couple times a day.  Plus he had prescription antibiotic eye ointment.   I don’t know if this is what you have.  Don’t guess.  Call your doctor and let him/her have a look at your eyes. Dry eyes require a little extra special care. As for the plugs, getting them put in doesn’t hurt.  My son has had it done four times.   Sandra

Response:

In article <4c4e5u4n7lvn9u3sr330pl0ijqdokoe…@4ax.com>, Wes Johnston <wesle…@msn.com> wrote >Hi CB, >If this reaction is from the peppers, then it is more than just an >feeling of minor discomfort when they are eaten.  It is pain, real >pain, from the tongue all the way down.  No amount of cold liquid, >bread, or rice can put out the fire.Then cramps, nausea,  and more >burning in the gut, and all the way out, if you know what I mean.

One pepper-pain-reliever worth trying is natural yoghurt. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

On Tue, 29 Jan 2002 04:41:28 GMT, CB White <cwhite0…@fsinet.net> wrote: >Whoa! How did I miss this information? Hot peppers/capsaicin can trigger bad >reactions in lupies? Can you tell me what reactions the dietary version >might trigger?

My understanding is that it actually induces inflammation in some people.  I will have to try to find a reply to my question about this in Hamline’s archives (good freakin’ luck!).  I am also under the impression that Solanins (Nightshades – including pepper, potato, tomato, etc) can increase photosensitivity – but that may be an ill-founded impression. Let me get back to you – unless someone else has an answer?

Response:

Hi CB, If this reaction is from the peppers, then it is more than just an feeling of minor discomfort when they are eaten.  It is pain, real pain, from the tongue all the way down.  No amount of cold liquid, bread, or rice can put out the fire.Then cramps, nausea,  and more burning in the gut, and all the way out, if you know what I mean. If I’m lucky, I throw up, and that shortens the process.  Until I figured it out, I thought I was having recurrent bouts of food poisoning. By the way, I tried the capsaicin cream once on my ankle and my knee. It burned so intensely that I had to wash it off.  It caused a serious burn, and I had to have it treated in the ER.  It was as though I had a terrible sunburn. On Tue, 29 Jan 2002 04:41:28 GMT, CB White <cwhite0…@fsinet.net> wrote: – Hide quoted text — Show quoted text ->in article ks4b5ug57vrm6ilblcgmfq1k71flv87…@4ax.com, KCat at >kcdoc…@ghg.net wrote on 1/28/02 12:14 PM: >> tried the capsaicin cream, intentionally.  Like you at first it felt >> warm and soothing.  But by the end of the day my neck and shoulder >> looked like I’d tried to bake myself to death.  it blistered badly and >> I never touched the stuff again. for some people it can really help >> with joint pain because apparently it overwhelms the Substance P (that >> which in some way controls the pain nerve perception of pain) in the >> area it is applied. But for lupies it’s a bad idea either as topical >> treatment or as part of our diet.  I’ll have to go digging but it >> actually triggers some kind of response directly related to lupus. >Whoa! How did I miss this information? Hot peppers/capsaicin can trigger bad >reactions in lupies? Can you tell me what reactions the dietary version >might trigger?

Response:

in article ks4b5ug57vrm6ilblcgmfq1k71flv87…@4ax.com, KCat at kcdoc…@ghg.net wrote on 1/28/02 12:14 PM: > tried the capsaicin cream, intentionally.  Like you at first it felt > warm and soothing.  But by the end of the day my neck and shoulder > looked like I’d tried to bake myself to death.  it blistered badly and > I never touched the stuff again. for some people it can really help > with joint pain because apparently it overwhelms the Substance P (that > which in some way controls the pain nerve perception of pain) in the > area it is applied. But for lupies it’s a bad idea either as topical > treatment or as part of our diet.  I’ll have to go digging but it > actually triggers some kind of response directly related to lupus.

Whoa! How did I miss this information? Hot peppers/capsaicin can trigger bad reactions in lupies? Can you tell me what reactions the dietary version might trigger?

Response:

On Mon, 28 Jan 2002 16:06:17 -0500, Wes Johnston <wesle…@msn.com> wrote: >Funny you should mention that.  I have not been able to eat spicy food >for at least 4 years now.  I used to suck up Buffalo wings, Sechuan, >etc.  Now it causes extreme, overwhelming pain on my tongue, and all >the way down my throat.  

sounds like a reaction to the capsaicin in the peppers.   However, folks should also know that vinegar used to pickle peppers (watch it!) is hard on the gut for some people too.  it might cause burning in the throat if you’re very sensitive but I’d be more inclined to blame the pepper or pepper extracts. >I can’t even taste the food!  It seems as >though I can counteract this sensation if I am on massive doses of >Benadryl.  The reason I know this is because I used it a few years ago >when I had so much trouble sleeping.  Only then could I eat spicy food >without pain.  Weird, huh?  Damn, I wish I could figure myself out.

I don’t think it’s that weird – but then, my hubby says I’m weird. (see "toeing the line" below).

Response:

"KCat" <kcdoc…@ghg.net> wrote in message

news:ks4b5ug57vrm6ilblcgmfq1k71flv87rhi@4ax.com… > On Sun, 27 Jan 2002 23:21:24 GMT, J <jwoot…@rogers.com>  wrote: > I made the same mistake.  I was having really nasty paresthesia on my > neck and shoulder.  I’d never had that before and I asked my boss > (MD-PhD).  She said it wasn’t uncommon – Paresthesia by the way feels > like a colony of ants has taken up residence in your skin/muscles.  I > still get it now and then when too long in one position.  Anywho – I > tried the capsaicin cream, intentionally.  Like you at first it felt > warm and soothing.  But by the end of the day my neck and shoulder > looked like I’d tried to bake myself to death.  it blistered badly and > I never touched the stuff again. for some people it can really help > with joint pain because apparently it overwhelms the Substance P (that > which in some way controls the pain nerve perception of pain) in the > area it is applied. But for lupies it’s a bad idea either as topical > treatment or as part of our diet.  I’ll have to go digging but it > actually triggers some kind of response directly related to lupus.

I have to be very careful as several of the Mexican herbs – used in almost all recipes in this area – make me miserable.  Eating in a new restaurant is always an adventure! Judith, from SoCal where they even put chilis in clam chowder!

Response:

In article <ks4b5ug57vrm6ilblcgmfq1k71flv87…@4ax.com>, KCat <kcdoc…@ghg.net> wrote [about peppers being bad for Lupies] My wife has discovered (by trial and error) that chili in food means her gullet locks shut. Once you start reading the labels, it’s amazing how many foods have chili in them! Sweet peppers, however, don’t seem to be a problem. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

- Hide quoted text — Show quoted text -On Mon, 28 Jan 2002 12:14:56 -0600, KCat <kcdoc…@ghg.net> wrote: >On Sun, 27 Jan 2002 23:21:24 GMT, J <jwoot…@rogers.com>  wrote: >>KCat wrote: >I made the same mistake.  I was having really nasty paresthesia on my >neck and shoulder.  I’d never had that before and I asked my boss >(MD-PhD).  She said it wasn’t uncommon – Paresthesia by the way feels >like a colony of ants has taken up residence in your skin/muscles.  I >still get it now and then when too long in one position.  Anywho – I >tried the capsaicin cream, intentionally.  Like you at first it felt >warm and soothing.  But by the end of the day my neck and shoulder >looked like I’d tried to bake myself to death.  it blistered badly and >I never touched the stuff again. for some people it can really help >with joint pain because apparently it overwhelms the Substance P (that >which in some way controls the pain nerve perception of pain) in the >area it is applied. But for lupies it’s a bad idea either as topical >treatment or as part of our diet.  I’ll have to go digging but it >actually triggers some kind of response directly related to lupus.

Funny you should mention that.  I have not been able to eat spicy food for at least 4 years now.  I used to suck up Buffalo wings, Sechuan, etc.  Now it causes extreme, overwhelming pain on my tongue, and all the way down my throat.  I can’t even taste the food!  It seems as though I can counteract this sensation if I am on massive doses of Benadryl.  The reason I know this is because I used it a few years ago when I had so much trouble sleeping.  Only then could I eat spicy food without pain.  Weird, huh?  Damn, I wish I could figure myself out.

Response:

there are probably some mild corticosteroid creams the doc could give you – but you have to use them very sparingly around the eyes because this skin is already quite thin. This will sound strange but… do you wear nail polish?  what about your hand soap or any other chemical you might be into on a regular basis (thinking of "chemicals" in a very broad term – cleaners, medications, make-up, nail polish, and so on). One case that I saw in an immunology course was a woman who had horrible swelling around her eyes that was red and had a bad rash along with it.  They discovered that she was often reaching up to rub her eyes (we all do it during day don’t we – it’s a habit to rub our eyes when we’re tired or stressed or just taking a break from our work).  Turned out she had an allergy to the nail polish and because the skin around the eyes and the mucous membranes there are so sensitive (much more so than the skin of our fingertips and elsewhere) the allergy was causing her eyes to swell and look horrible.  within a short time after stopping the nail polish – the problem went away. So consider something that you might be using daily that could be an allergen – even an "antibacterial soap" or your shampoo or the like could be the culprit.  this area is really sensitive – I once ate a nice spicy Chinese entree and tho I washed my hands afterward, apparently at some point I reached up and touched one eyelid.  We took our customary saturday post-lunch nap and I awoke with that eye swollen shut and a huge "blister" on the eyelid.  so just a little capsaicin from those lovely little red peppers was enough to cause that for me. Claritin does take effect immediately to some degree  in most folks *but* it works best, (as do all anti-histamines) when taken daily and therefore results will be more noticeable after a week or so. On Sat, 26 Jan 2002 09:11:00 -0800 (PST), Jacqu…@webtv.net – Hide quoted text — Show quoted text -(Jacqueline)  wrote: >Hi all…. > HELP, I have bad rash around the eye: red  skin rash, burning and >driving me nuts. The dr. gave me clariton for alergy, but the skin is >red, and almost looks like black eyes. I have tried everything in the >house to get relief. > I have my tear ducs plugged for dry eye, and have Sjorens, lupus, >fibro, reynaurds, and few other wonderful things. > I feel bad for you all and wish we could find a cure >        thank you in advance ….. > love >            Jacquie >God Bless

Response:

Hi all….  HELP, I have bad rash around the eye: red  skin rash, burning and driving me nuts. The dr. gave me clariton for alergy, but the skin is red, and almost looks like black eyes. I have tried everything in the house to get relief.  I have my tear ducs plugged for dry eye, and have Sjorens, lupus, fibro, reynaurds, and few other wonderful things.  I feel bad for you all and wish we could find a cure         thank you in advance …..  love             Jacquie God Bless

Response:

I have no magic but have you tried something as simple as Neosporin? Plain Neosporin. Plain Neosporin is the same stuff as can go into the eyes, the last time I checked it was, anyway so it won’t hurt you if it melts a wee bit. Cool wet wash cloth? How did they plug your tear ducts? I thought clariton takes ages for it to work – has to build in your system or something like that? Bev "Jacqueline" <Jacqu…@webtv.net> wrote in message

news:23629-3C52E324-86@storefull-103.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Hi all…. >  HELP, I have bad rash around the eye: red  skin rash, burning and > driving me nuts. The dr. gave me clariton for alergy, but the skin is > red, and almost looks like black eyes. I have tried everything in the > house to get relief. >  I have my tear ducs plugged for dry eye, and have Sjorens, lupus, > fibro, reynaurds, and few other wonderful things. >  I feel bad for you all and wish we could find a cure >         thank you in advance ….. >  love >             Jacquie > God Bless

————————————————————————— – —- – Hide quoted text — Show quoted text –

Response:

Question:

Hi im new to this list but i think that is a good idea and i agree with the disclaimer part too even the chats have to have disclaimers now cuz you know there will be one really whacked individual out there that takes it to seriously if it isnt miraculous I mean think about it they have to put DO NOT USE IN SHOWER on a hair dryer ROFL Nancy

Response:

In article <meor4ugn37cco9bbj22shvqrkuunv3t…@4ax.com>, KCat <kcdoc…@ghg.net> wrote >Hi all, >I didn’t know how to title this. >First Question:  In the new FAQ, does anyone object to a section >devoted to products that can be useful to us.  I do not mean >supplements or anything of questionable medical validity.  I mean >things like the UV blocking clothing, hats, sunblocks, etc.  The >subsection would be in Section 5 and would have the URL and a brief >description of the product.  

Sounds a good idea – such things are indeed Frequently Asked. I think the FAQ should discuss the possible advantages of these products, and then say "Here are some suppliers BUT PLEASE NOTE that we are not saying that any particular product will help any given person, nor that one supplier is better or worse than another". >Second Question: [] >Third: Should this list include products that are not necessarily >online but available in most countries.  Or perhaps that should be a >section under "treatment"?

I agree that "not-online things" should appear somewhere. >I currently have Solumbra, Sun Protective Clothing (Canada) and >Wristies listed.

Anyone in Oz reading this? There were many antisun products there, I recall someone saying a year or three ago? — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

In article <20020123033821.19991.00005…@mb-bk.aol.com>, BarrellRnr <barrell…@aol.com> wrote >Hi im new to this list but i think that is a good idea and i agree with the >disclaimer part too even the chats have to have disclaimers now cuz you know >there will be one really whacked individual out there that takes it to >seriously if it isnt miraculous I mean think about it they have to put DO NOT >USE IN SHOWER on a hair dryer ROFL >Nancy

I prefer the tale about having to put "Not to be used for haircuts" on rotary lawn mowers… — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

This sounds good to me KCat. It would be especially helpful for a new "lupie" to have access to those web sites. Most of us know about them. But a new somebody wouldn’t. barbtoo

Response:

KCat, I think it is a great idea that you have. I would add www.dermadoctor.com    it has Total block 65.  I love it and it is clear too. they also have other sun block and sun screen products.  as well as sun clothing, like jackets and hats.   The total block is much cheaper on that site than the www.fallene.com  site where it is made. don’t know any more right now. But indeed it is a great idea of yours so how ya doing?  Heard from Kim?  I have not lately. janers

Response:

Sounds like a very good idea.  And, THANKS for spending all this time to update. Jackie "KCat" <kcdoc…@ghg.net> wrote in message

news:meor4ugn37cco9bbj22shvqrkuunv3tcer@4ax.com… – Hide quoted text — Show quoted text -> Hi all, > I didn’t know how to title this. > First Question:  In the new FAQ, does anyone object to a section > devoted to products that can be useful to us.  I do not mean > supplements or anything of questionable medical validity.  I mean > things like the UV blocking clothing, hats, sunblocks, etc.  The > subsection would be in Section 5 and would have the URL and a brief > description of the product. > Second Question:  If you have found a product you like particularly > for symptomatic relief (bed type, clothing type, sunblock, and so on.) > and know it has a URL, please feel send me the link information and I > will investigate it. > Third: Should this list include products that are not necessarily > online but available in most countries.  Or perhaps that should be a > section under "treatment"? > I currently have Solumbra, Sun Protective Clothing (Canada) and > Wristies listed.

Response:

KCat <kcdoc…@ghg.net> wrote in message

news:meor4ugn37cco9bbj22shvqrkuunv3tcer@4ax.com… > Hi all, > I didn’t know how to title this. > First Question:  In the new FAQ, does anyone object to a section > devoted to products that can be useful to us.  I do not mean > supplements or anything of questionable medical validity.  I mean > things like the UV blocking clothing, hats, sunblocks, etc.  The > subsection would be in Section 5 and would have the URL and a brief > description of the product.

ANYthing that can help us belongs in the FAQ – Hide quoted text — Show quoted text -> Second Question:  If you have found a product you like particularly > for symptomatic relief (bed type, clothing type, sunblock, and so on.) > and know it has a URL, please feel send me the link information and I > will investigate it. > Third: Should this list include products that are not necessarily > online but available in most countries.  Or perhaps that should be a > section under "treatment"? > I currently have Solumbra, Sun Protective Clothing (Canada) and > Wristies listed.

Response:

I think that is a neat idea. Why don’t you add the link for your special seamless socks? Maybe you should consider a disclaimer in that section just something to say that the products and companies are listed because they have been recommended by satisfied users within the group and that they are listed without (BF—damn I hate when I do this) compensation or endorsement. You might be able to check the sites for links and logos from the companies. Bev "KCat" <kcdoc…@ghg.net> wrote in message

news:meor4ugn37cco9bbj22shvqrkuunv3tcer@4ax.com… – Hide quoted text — Show quoted text -> Hi all, > I didn’t know how to title this. > First Question:  In the new FAQ, does anyone object to a section > devoted to products that can be useful to us.  I do not mean > supplements or anything of questionable medical validity.  I mean > things like the UV blocking clothing, hats, sunblocks, etc.  The > subsection would be in Section 5 and would have the URL and a brief > description of the product. > Second Question:  If you have found a product you like particularly > for symptomatic relief (bed type, clothing type, sunblock, and so on.) > and know it has a URL, please feel send me the link information and I > will investigate it. > Third: Should this list include products that are not necessarily > online but available in most countries.  Or perhaps that should be a > section under "treatment"? > I currently have Solumbra, Sun Protective Clothing (Canada) and > Wristies listed.

Response:

Hi all, I didn’t know how to title this. First Question:  In the new FAQ, does anyone object to a section devoted to products that can be useful to us.  I do not mean supplements or anything of questionable medical validity.  I mean things like the UV blocking clothing, hats, sunblocks, etc.  The subsection would be in Section 5 and would have the URL and a brief description of the product.   Second Question:  If you have found a product you like particularly for symptomatic relief (bed type, clothing type, sunblock, and so on.) and know it has a URL, please feel send me the link information and I will investigate it. Third: Should this list include products that are not necessarily online but available in most countries.  Or perhaps that should be a section under "treatment"? I currently have Solumbra, Sun Protective Clothing (Canada) and Wristies listed.

Response:

Question:

Hi Dot, You have been through a lot. I can see that. I hope you will talk to us as much as you can. I am sure you will be able to help someone too. Don’t worry about meds messing up your memory. It is a common thing around here. I get like that too when I am very sick. There are times when it is hard to concentrate. Hoping to talk soon, BJ "Dot S." <das…@webtv.net> wrote in message

news:28286-3C352BE3-634@storefull-256.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> i just wanted to say thank you to everyone  who responded , im 31 this > month and iv been to hell and back since i was 18 starting with lupus > then working my way to every test and treatment possible to try to save > my kidneys but that just didnt happen so i was on dialysis for seven and > a half years untill i got  that sick i just didnt want to go on ,my mom > called my 2sisters and my brother and 2 transplants latter im still > going ad still have lupus i undestand everything you are all going > through so if i can help with any questions please let me know ill try > to answer them if i can still remember the meds i take kind of make me > forget things i guess that is a small  price to pay to stay alive. most > of all it is nice to talk to someone who knows what im still going > through…thanks again DOT

Response:

i just wanted to say thank you to everyone  who responded , im 31 this month and iv been to hell and back since i was 18 starting with lupus then working my way to every test and treatment possible to try to save my kidneys but that just didnt happen so i was on dialysis for seven and a half years untill i got  that sick i just didnt want to go on ,my mom called my 2sisters and my brother and 2 transplants latter im still going ad still have lupus i undestand everything you are all going through so if i can help with any questions please let me know ill try to answer them if i can still remember the meds i take kind of make me forget things i guess that is a small  price to pay to stay alive. most of all it is nice to talk to someone who knows what im still going through…thanks again DOT

Response:

Question:

I took place at 5am here. I don’t know if it was cloudy or not. It is hard to see through closed eyes. BJ "Andy" <a…@kitzbuhel.demon.co.uk> wrote in message

news:S9iFoUAcbC+7EwkV@kitzbuhel.demon.co.uk… – Hide quoted text — Show quoted text -> In article <R2VJ7.1793$mv.49414…@tomcat.sk.sympatico.ca>, BJ > <B…@sk.nojunk.ca> wrote > >As that what you have been doing too, Andy? > No – its dull and overcast here, and anyway the peak display is at 10am > local time so I can’t see it. > — > Andy [Editor, Austrian Philatelic Society] > For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> > For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> > For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

On Sun, 18 Nov 2001 19:08:07 GMT, "BJ" <B…@sk.nojunk.ca>  wrote: >Hi KCat, >I was wondering about you. You seemed to be so quiet lately. How have you >been? >Fondly, >BJ

honestly, kinda overwhelmed with all the posts and being back on lupus-l  (what was I thinking?) It’s the Holiday week (Our US Thanksgiving) so we are relaxing when we can.  otherwise, I’m fine…

Response:

KCat, I am glad to hear that things are okay. Enjoy your holiday. Fondly, BJ "KCat" <kcdoc…@ghg.net> wrote in message

news:khrivtgd9jcckl51p7hc7injiq0t7smlko@4ax.com… – Hide quoted text — Show quoted text -> On Sun, 18 Nov 2001 19:08:07 GMT, "BJ" <B…@sk.nojunk.ca>  wrote: > >Hi KCat, > >I was wondering about you. You seemed to be so quiet lately. How have you > >been? > >Fondly, > >BJ > honestly, kinda overwhelmed with all the posts and being back on > lupus-l  (what was I thinking?) > It’s the Holiday week (Our US Thanksgiving) so we are relaxing when we > can.  otherwise, I’m fine…

Response:

In article <lk+3MYAkdB+7E…@kitzbuhel.demon.co.uk>, Andy <a…@kitzbuhel.demon.co.uk> wrote: > In article <rGTJ7.1782$mv.18939…@tomcat.sk.sympatico.ca>, BJ > <B…@sk.nojunk.ca> wrote > >Hi KCat, > >I was wondering about you. You seemed to be so quiet lately. How have you > >been? > Watching shooting stars, I expect. > — > Andy [Editor, Austrian Philatelic Society] > For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> > For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> > For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Andy  I hope the meteor shower was as spectacular in England as it was for us in Northern California.  I was awakened at 2:30 A.M. by what I thought were flashlights outside our bedroom window.  I got up and went outside it was a cloudless night.  The sky was pitch black with more stars than I could ever remember seeing and then meteors were blazing all over the sky.  I stood  there all alone and just was overwhelmed by the wonder of it all.  KCat   I hope you were seeing it too    cheers  ruth

Response:

Hi KCat, I was wondering about you. You seemed to be so quiet lately. How have you been? Fondly, BJ "KCat" <kcdoc…@ghg.net> wrote in message

news:keqfvtku0h0rs46l7nsivkn27epd7heanc@4ax.com… – Hide quoted text — Show quoted text -> On Sun, 18 Nov 2001 16:09:49 GMT, in alt.support.lupus "BJ" > <B…@sk.nojunk.ca> wrote: > >Hi Everyone, > >My good thing report actually involves someone else on the group. I feel > >inspired by the courage and positive attitude of someone who has gone > >through so much, not only with her illness, but with other problems too. She > >has just finished a difficult round of treatment and is already talking > >about plans with her family. Even while all this was going on, she thought > >of others here and showed concern for them. > >Thank you Cindy. > >Hugs, > >BJ > AMEN!  Thank you Cindy. You are a Blessing. > KCat

Response:

In article <rGTJ7.1782$mv.18939…@tomcat.sk.sympatico.ca>, BJ <B…@sk.nojunk.ca> wrote >Hi KCat, >I was wondering about you. You seemed to be so quiet lately. How have you >been?

Watching shooting stars, I expect. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

As that what you have been doing too, Andy? BJ "Andy" <a…@kitzbuhel.demon.co.uk> wrote in message

news:lk+3MYAkdB+7EwTe@kitzbuhel.demon.co.uk… – Hide quoted text — Show quoted text -> In article <rGTJ7.1782$mv.18939…@tomcat.sk.sympatico.ca>, BJ > <B…@sk.nojunk.ca> wrote > >Hi KCat, > >I was wondering about you. You seemed to be so quiet lately. How have you > >been? > Watching shooting stars, I expect. > — > Andy [Editor, Austrian Philatelic Society] > For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> > For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> > For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

In article <R2VJ7.1793$mv.49414…@tomcat.sk.sympatico.ca>, BJ <B…@sk.nojunk.ca> wrote >As that what you have been doing too, Andy?

No – its dull and overcast here, and anyway the peak display is at 10am local time so I can’t see it. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

Hi Everyone, My good thing report actually involves someone else on the group. I feel inspired by the courage and positive attitude of someone who has gone through so much, not only with her illness, but with other problems too. She has just finished a difficult round of treatment and is already talking about plans with her family. Even while all this was going on, she thought of others here and showed concern for them. Thank you Cindy. Hugs, BJ

Response:

On Sun, 18 Nov 2001 16:09:49 GMT, in alt.support.lupus "BJ" <B…@sk.nojunk.ca> wrote: >Hi Everyone, >My good thing report actually involves someone else on the group. I feel >inspired by the courage and positive attitude of someone who has gone >through so much, not only with her illness, but with other problems too. She >has just finished a difficult round of treatment and is already talking >about plans with her family. Even while all this was going on, she thought >of others here and showed concern for them. >Thank you Cindy. >Hugs, >BJ

AMEN!  Thank you Cindy. You are a Blessing. KCat

Response: