Deanna

April 16, 2004

Just when I or Mike need a carton of cigs

> How often do you go to the reservation? I'm there every friday

after I pick up.

>

April 16, 2004

Just when I or Mike need a carton of cigs

> How often do you go to the reservation? I'm there every friday

after I pick up.

>

April 16, 2004

Just when I or Mike need a carton of cigs

> How often do you go to the reservation? I'm there every friday

after I pick up.

>

April 16, 2004

Whoa.......you are a speed demon! I have to admit 110 is a little to fast for me! Geez......I am getting old! UGH!!!!!

Karol

Karol & hehehehehe

Ahhhhh the thruway..... hehehehehe when I go on the thruway I am doing a minimum of 90 mph.... I know the signs say 65 but there is NO WAY I am going to go that slow.... I pushed my intreped up to 110 on the thruway a few times from Buffalo to Rochester and it was fun!!!!!! I was on the thruway Monday (had to go to indian res. for smokes) and I pushed the new van to 90 but I didn't want to push her any farther so I stayed at around 80 hehehehehe I just love the thruway and people are passing me at times too on the thruway....Deanna> I've never had a speeding ticket. Had close calls, but no tickets. When you get on the thruway up here or the expressway, it's all going, no stop lights or crap like that. You can just keep going and going. And believe me, there are plenty of people passing by me! Especially those cars with lights on top of them!!!> > "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

April 16, 2004

Whoa.......you are a speed demon! I have to admit 110 is a little to fast for me! Geez......I am getting old! UGH!!!!!

Karol

Karol & hehehehehe

Ahhhhh the thruway..... hehehehehe when I go on the thruway I am doing a minimum of 90 mph.... I know the signs say 65 but there is NO WAY I am going to go that slow.... I pushed my intreped up to 110 on the thruway a few times from Buffalo to Rochester and it was fun!!!!!! I was on the thruway Monday (had to go to indian res. for smokes) and I pushed the new van to 90 but I didn't want to push her any farther so I stayed at around 80 hehehehehe I just love the thruway and people are passing me at times too on the thruway....Deanna> I've never had a speeding ticket. Had close calls, but no tickets. When you get on the thruway up here or the expressway, it's all going, no stop lights or crap like that. You can just keep going and going. And believe me, there are plenty of people passing by me! Especially those cars with lights on top of them!!!> > "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

April 16, 2004

Whoa.......you are a speed demon! I have to admit 110 is a little to fast for me! Geez......I am getting old! UGH!!!!!

Karol

Karol & hehehehehe

Ahhhhh the thruway..... hehehehehe when I go on the thruway I am doing a minimum of 90 mph.... I know the signs say 65 but there is NO WAY I am going to go that slow.... I pushed my intreped up to 110 on the thruway a few times from Buffalo to Rochester and it was fun!!!!!! I was on the thruway Monday (had to go to indian res. for smokes) and I pushed the new van to 90 but I didn't want to push her any farther so I stayed at around 80 hehehehehe I just love the thruway and people are passing me at times too on the thruway....Deanna> I've never had a speeding ticket. Had close calls, but no tickets. When you get on the thruway up here or the expressway, it's all going, no stop lights or crap like that. You can just keep going and going. And believe me, there are plenty of people passing by me! Especially those cars with lights on top of them!!!> > "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

April 25, 2004

Thank you hon, I didn't think so either. I just didn't want to remove

her photo album in case I was wrong...

> Lori Q is not a member anymore. I haven't heard from her in awhile

but she wasn't feeling good. And of course Debs is still a member. I

heard from her a couple of weeks ago.

>

April 25, 2004

Thank you hon, I didn't think so either. I just didn't want to remove

her photo album in case I was wrong...

> Lori Q is not a member anymore. I haven't heard from her in awhile

but she wasn't feeling good. And of course Debs is still a member. I

heard from her a couple of weeks ago.

>

April 25, 2004

Thank you hon, I didn't think so either. I just didn't want to remove

her photo album in case I was wrong...

> Lori Q is not a member anymore. I haven't heard from her in awhile

but she wasn't feeling good. And of course Debs is still a member. I

heard from her a couple of weeks ago.

>

May 19, 2004

Thanks, I'm ok. My kidneys definitely have permanent damage, but it's not

as bad as they originally thought it would be after the flare I have had.

So, I consider myself lucky.

My pancreas is ok now, after I've starved myself for a few days. But I

finally lost some weight and have about 9 more to go to get back to my

pre-steroid weight. I know that is not your problem, you could probably use

some of the weight I have lost, but getting back to my 140 is extremely

important for my self esteem.

I still get spasticity. My hands hurt like hell when it happens, and

no-one seems to know why this is happening. We only know this is not

neurotic as it does not happen spontaneously. I happens whenever I use them

too much. Same with my neck. There's some movements of my head that cause

the tendons to spasm. My legs do it when I walk to much.

I have been taking care of 4 kids now. In addition to my 3 boys I have a 5

year old. I've been helping my friend. She has a lot of problems, her

husband left her when her son was only 1. She has no family here in the

states and she is not well. Just last night she had to go to the ER thinking

she would have to stay. Thankfully, they let her go, but a year ago she was

hospitalized for two months.

He stayed overnight. He's a good boy, and there have always been people

helping me when I needed it. I'm glad I can help her in return.

Mojo

my appointment.....

> >

> > > Well... As you can see I was not hospitalized.

> > >

> > > Went to my appointment today with the lung dr. Did all those

> not so

> > > fun breathing tests and of course passed them as usual. (well I

> > > should say there was no change from all the previous tests)

> > >

> > > Went in talked with the doctor he says - I don't know what to

> tell

> > > you, all your tests we have done in the past 3 weeks prove to

> show us

> > > your fine, but from what your describing sounds all to be heart

> > > related but even all the heart tests we have performed are

> showing no

> > > change. I was like - Look, my quality of life sucks, I can't

> breath,

> > > I can't lay down without going into a coughing frenzy which then

> > > leads into me either vomitting or losing my breath and turning

> blue.

> > > SOMETHING is NOT right!

> > > He told me to get up on the table and lay down so he could hear

> what

> > > I was describing and he finally heard it. Then as I went into a

> > > coughing frenzy he helped me up and said hang on a second. He

> comes

> > > back and says " we're going to do a bronchoscopy on you and see

> if

> > > there is some sort of obstruction going on in there " As much as

> I

> > > hate that test I was like fine. So went and did the god awful

> test

> > > and he says well good news and bad news - the good news as I

> have

> > > been telling you all along is that you don't have emphasema, you

> > > don't have lung cancer, the bad news is I don't know what is

> causing

> > > this but call me Friday and hopefully I will have some more

> answers.

> > > I just said you know this is sad when I would rather hear you

> tell me

> > > I had cancer or emphasema so that at least I knew what the heck

> was

> > > going on, what was causing all this -- but NO - again no

> answer - He

> > > even brought in 2 other lung docs, they went thru all the tests,

> > > listened to me, and all said the same damn thing.

> > > So I am screwed...

> > >

> > > My throat and nose hurt from the novacaine and scope so I am

> going to

> > > go back to the couch and get in my sitting position and try to

> get

> > > some much needed rest. I just wanted to update those of you who

> were

> > > intrested.

> > >

> > > Take care all and have a good night.

> > >

> > > Hugs

> > > Deanna

> > >

> > > " The LUPIES Store " Come check out our store...

> > > http://www.cafepress.com/thelupies

> > >

> > > " The LUPIES Web Page "

> > > http://www.itzarion.com/lupusgroup.html

> > >

> > > " The LUPIES online photo albums! "

> > > Check out what your fellow Lupies look like...

> > > http://www.picturetrail.com/lupies

> > >

May 19, 2004

Thanks, I'm ok. My kidneys definitely have permanent damage, but it's not

as bad as they originally thought it would be after the flare I have had.

So, I consider myself lucky.

My pancreas is ok now, after I've starved myself for a few days. But I

finally lost some weight and have about 9 more to go to get back to my

pre-steroid weight. I know that is not your problem, you could probably use

some of the weight I have lost, but getting back to my 140 is extremely

important for my self esteem.

I still get spasticity. My hands hurt like hell when it happens, and

no-one seems to know why this is happening. We only know this is not

neurotic as it does not happen spontaneously. I happens whenever I use them

too much. Same with my neck. There's some movements of my head that cause

the tendons to spasm. My legs do it when I walk to much.

I have been taking care of 4 kids now. In addition to my 3 boys I have a 5

year old. I've been helping my friend. She has a lot of problems, her

husband left her when her son was only 1. She has no family here in the

states and she is not well. Just last night she had to go to the ER thinking

she would have to stay. Thankfully, they let her go, but a year ago she was

hospitalized for two months.

He stayed overnight. He's a good boy, and there have always been people

helping me when I needed it. I'm glad I can help her in return.

Mojo

my appointment.....

> >

> > > Well... As you can see I was not hospitalized.

> > >

> > > Went to my appointment today with the lung dr. Did all those

> not so

> > > fun breathing tests and of course passed them as usual. (well I

> > > should say there was no change from all the previous tests)

> > >

> > > Went in talked with the doctor he says - I don't know what to

> tell

> > > you, all your tests we have done in the past 3 weeks prove to

> show us

> > > your fine, but from what your describing sounds all to be heart

> > > related but even all the heart tests we have performed are

> showing no

> > > change. I was like - Look, my quality of life sucks, I can't

> breath,

> > > I can't lay down without going into a coughing frenzy which then

> > > leads into me either vomitting or losing my breath and turning

> blue.

> > > SOMETHING is NOT right!

> > > He told me to get up on the table and lay down so he could hear

> what

> > > I was describing and he finally heard it. Then as I went into a

> > > coughing frenzy he helped me up and said hang on a second. He

> comes

> > > back and says " we're going to do a bronchoscopy on you and see

> if

> > > there is some sort of obstruction going on in there " As much as

> I

> > > hate that test I was like fine. So went and did the god awful

> test

> > > and he says well good news and bad news - the good news as I

> have

> > > been telling you all along is that you don't have emphasema, you

> > > don't have lung cancer, the bad news is I don't know what is

> causing

> > > this but call me Friday and hopefully I will have some more

> answers.

> > > I just said you know this is sad when I would rather hear you

> tell me

> > > I had cancer or emphasema so that at least I knew what the heck

> was

> > > going on, what was causing all this -- but NO - again no

> answer - He

> > > even brought in 2 other lung docs, they went thru all the tests,

> > > listened to me, and all said the same damn thing.

> > > So I am screwed...

> > >

> > > My throat and nose hurt from the novacaine and scope so I am

> going to

> > > go back to the couch and get in my sitting position and try to

> get

> > > some much needed rest. I just wanted to update those of you who

> were

> > > intrested.

> > >

> > > Take care all and have a good night.

> > >

> > > Hugs

> > > Deanna

> > >

> > > " The LUPIES Store " Come check out our store...

> > > http://www.cafepress.com/thelupies

> > >

> > > " The LUPIES Web Page "

> > > http://www.itzarion.com/lupusgroup.html

> > >

> > > " The LUPIES online photo albums! "

> > > Check out what your fellow Lupies look like...

> > > http://www.picturetrail.com/lupies

> > >

May 19, 2004

I think after living with Lupus for ummmm 10 years or so, we should

get an honorary medical degree! I guarantee we study as much (if not

more) and we can certainly be empathetic! Hmmmm Jerri Beasley, MD -

not a bad ring to it huh? LOL Even " real " doctors are

just " practicing " right? LMBO

Hugs,

Jerri

> hehehehe I wish he would - my rhuemy pops in as he has an acct with

> the group and you never know he may just pass it onto the others...

> But I like the idea of you all doing research on trying to figure

out

> what the heck is wrong with me =) hehehehehe

>

> I would have my insurance pay the one who discovers the problem if

I

> could... lol

>

> Thank you for bringing a smile and some laughter into my life.

>

> Hugs

> Deanna

May 22, 2004

How can I be bouncing when I don't receive any email from the group?

Makes no sense to me.....

> Your address is bouncing. I just unbounced myself and see you are

on there too. Must be a roadrunner thing. It sure isn't from too many

emails.

>

May 22, 2004

How can I be bouncing when I don't receive any email from the group?

Makes no sense to me.....

> Your address is bouncing. I just unbounced myself and see you are

on there too. Must be a roadrunner thing. It sure isn't from too many

emails.

>

May 22, 2004

How can I be bouncing when I don't receive any email from the group?

Makes no sense to me.....

> Your address is bouncing. I just unbounced myself and see you are

on there too. Must be a roadrunner thing. It sure isn't from too many

emails.

>

May 25, 2004

When I was on imuran for a long, long time, they told me that medication causes cancer. I keep having check ups, everything is ok and I hope it's the same with Cellcept. I also have a possibility of being on it sometime in the future, and my doc did say once I go on it it'll probably be for life.

So, try and not think about it. Just hope it works and that you finally start feeling better.

Good luck

Mojo

update and cellcept

Hi all,

I wanted to Welcome all the new members, say Happy Birthday to those I missed, and wish those that had Anniversaries a Happy Anniversary.

I have not been around much lately due to my health. It seems it has just gotten worse so for me to be online much is not an easy feat in itself. I still can not lay down without losing breath, and I have gone for all the heart testing and I pass those with flying colors. Every test they have run me through comes back fine, I even had a bronchoscopy last Wednesday with a biopsy that came back normal. Everyone is just chalking this up to put the blame on Lupus!!! I feel they are all just idiots and don’t want to take the actual time to investigate so they take the easy route and put the blame on the lupus and send me back to the rheumy. Thank God, I have an awesome rheumy who doesn’t mind taking the time to research, investigate, etc. He just wishes that the other doctors would communicate with him as to “WHY” they feel it is the lupus. He is as fed up with my other doctors as I am and says I am much to polite to these other doctors J ( I just say screw them to him ) he says he would be much more nastier J

I saw the rheumy today and the new course of action which I knew was coming was to put me on Cellcept. So I just took my first pill about 10 mins ago. One of the side effects is lymphoma – but at this point I don’t care if I get cancer because at least doctors out there know how to treat it – All my doctors know I don’t care if I get diagnosed with cancer as they all know what I have been through and in my opinion cancer seems easier to treat than this damn lupus. Several family members have died of cancer, and are still going through cancer so I know what to expect if I do indeed come down with it. It is sad to say but at this point what else can I say or do.

If this Cellcept does not help (which we are hoping it will) this was the last medicine that we can try before I end up having to go through chemo and all that. So in a way I guess I am prepared for a cancer dx if it comes to it.

Several of my docs wanted to up my depression med because they say I am too depressed – but HELLO wouldn’t they be this way too if none of their doctors were willing to investigate and research what is really going on? My rheumy says I don’t need to up my dose that I am actually taking all this reasonably well, even he doesn’t know how I cope. Lol

My rheumy also gave me a new script for a new muscle relaxer to see if it will help my pain since I have to try to sleep sitting upright and omg I ache all over. Both the rheumy and I agree that since being taken off the methotrexate all my symptoms turned for the worse – the downfall is that I can not go back on it due to my thrombocytopenia and my blood doc says if I continue on it I could have another stroke and the next stroke could be my last. I look back now and really realize just how much of a wonder drug methotrexate truly was for me and keeping my lupus controlled.

Well, I am going to go lay down, I wish you all well and know that your all in my thoughts and prayers always.

Take care…

Hugs,

Deanna

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

May 25, 2004

When I was on imuran for a long, long time, they told me that medication causes cancer. I keep having check ups, everything is ok and I hope it's the same with Cellcept. I also have a possibility of being on it sometime in the future, and my doc did say once I go on it it'll probably be for life.

So, try and not think about it. Just hope it works and that you finally start feeling better.

Good luck

Mojo

update and cellcept

Hi all,

I wanted to Welcome all the new members, say Happy Birthday to those I missed, and wish those that had Anniversaries a Happy Anniversary.

I have not been around much lately due to my health. It seems it has just gotten worse so for me to be online much is not an easy feat in itself. I still can not lay down without losing breath, and I have gone for all the heart testing and I pass those with flying colors. Every test they have run me through comes back fine, I even had a bronchoscopy last Wednesday with a biopsy that came back normal. Everyone is just chalking this up to put the blame on Lupus!!! I feel they are all just idiots and don’t want to take the actual time to investigate so they take the easy route and put the blame on the lupus and send me back to the rheumy. Thank God, I have an awesome rheumy who doesn’t mind taking the time to research, investigate, etc. He just wishes that the other doctors would communicate with him as to “WHY” they feel it is the lupus. He is as fed up with my other doctors as I am and says I am much to polite to these other doctors J ( I just say screw them to him ) he says he would be much more nastier J

I saw the rheumy today and the new course of action which I knew was coming was to put me on Cellcept. So I just took my first pill about 10 mins ago. One of the side effects is lymphoma – but at this point I don’t care if I get cancer because at least doctors out there know how to treat it – All my doctors know I don’t care if I get diagnosed with cancer as they all know what I have been through and in my opinion cancer seems easier to treat than this damn lupus. Several family members have died of cancer, and are still going through cancer so I know what to expect if I do indeed come down with it. It is sad to say but at this point what else can I say or do.

If this Cellcept does not help (which we are hoping it will) this was the last medicine that we can try before I end up having to go through chemo and all that. So in a way I guess I am prepared for a cancer dx if it comes to it.

Several of my docs wanted to up my depression med because they say I am too depressed – but HELLO wouldn’t they be this way too if none of their doctors were willing to investigate and research what is really going on? My rheumy says I don’t need to up my dose that I am actually taking all this reasonably well, even he doesn’t know how I cope. Lol

My rheumy also gave me a new script for a new muscle relaxer to see if it will help my pain since I have to try to sleep sitting upright and omg I ache all over. Both the rheumy and I agree that since being taken off the methotrexate all my symptoms turned for the worse – the downfall is that I can not go back on it due to my thrombocytopenia and my blood doc says if I continue on it I could have another stroke and the next stroke could be my last. I look back now and really realize just how much of a wonder drug methotrexate truly was for me and keeping my lupus controlled.

Well, I am going to go lay down, I wish you all well and know that your all in my thoughts and prayers always.

Take care…

Hugs,

Deanna

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

May 25, 2004

When I was on imuran for a long, long time, they told me that medication causes cancer. I keep having check ups, everything is ok and I hope it's the same with Cellcept. I also have a possibility of being on it sometime in the future, and my doc did say once I go on it it'll probably be for life.

So, try and not think about it. Just hope it works and that you finally start feeling better.

Good luck

Mojo

update and cellcept

Hi all,

I wanted to Welcome all the new members, say Happy Birthday to those I missed, and wish those that had Anniversaries a Happy Anniversary.

I have not been around much lately due to my health. It seems it has just gotten worse so for me to be online much is not an easy feat in itself. I still can not lay down without losing breath, and I have gone for all the heart testing and I pass those with flying colors. Every test they have run me through comes back fine, I even had a bronchoscopy last Wednesday with a biopsy that came back normal. Everyone is just chalking this up to put the blame on Lupus!!! I feel they are all just idiots and don’t want to take the actual time to investigate so they take the easy route and put the blame on the lupus and send me back to the rheumy. Thank God, I have an awesome rheumy who doesn’t mind taking the time to research, investigate, etc. He just wishes that the other doctors would communicate with him as to “WHY” they feel it is the lupus. He is as fed up with my other doctors as I am and says I am much to polite to these other doctors J ( I just say screw them to him ) he says he would be much more nastier J

I saw the rheumy today and the new course of action which I knew was coming was to put me on Cellcept. So I just took my first pill about 10 mins ago. One of the side effects is lymphoma – but at this point I don’t care if I get cancer because at least doctors out there know how to treat it – All my doctors know I don’t care if I get diagnosed with cancer as they all know what I have been through and in my opinion cancer seems easier to treat than this damn lupus. Several family members have died of cancer, and are still going through cancer so I know what to expect if I do indeed come down with it. It is sad to say but at this point what else can I say or do.

If this Cellcept does not help (which we are hoping it will) this was the last medicine that we can try before I end up having to go through chemo and all that. So in a way I guess I am prepared for a cancer dx if it comes to it.

Several of my docs wanted to up my depression med because they say I am too depressed – but HELLO wouldn’t they be this way too if none of their doctors were willing to investigate and research what is really going on? My rheumy says I don’t need to up my dose that I am actually taking all this reasonably well, even he doesn’t know how I cope. Lol

My rheumy also gave me a new script for a new muscle relaxer to see if it will help my pain since I have to try to sleep sitting upright and omg I ache all over. Both the rheumy and I agree that since being taken off the methotrexate all my symptoms turned for the worse – the downfall is that I can not go back on it due to my thrombocytopenia and my blood doc says if I continue on it I could have another stroke and the next stroke could be my last. I look back now and really realize just how much of a wonder drug methotrexate truly was for me and keeping my lupus controlled.

Well, I am going to go lay down, I wish you all well and know that your all in my thoughts and prayers always.

Take care…

Hugs,

Deanna

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

June 3, 2004

HAPPY ANNIVERSARY !!!

HUGS, M.M.

June 9, 2004

I am not doing great, although I'm not doing bad either. I'm just real,

real tired. Finals are over, and so is pretty much the school year. It's all

in my earlier message to . Sorry, hands are already hurting and I want

to finish typing, so please read that.

I wish I could rest more, but there is never enough time. Now, I'm pretty

happy that the summer is starting, but that means I will be constantly busy

with the boys and won't have much time for myself at all. Summer always gets

a bit crazy, so I already have to rethink on what I can do to maybe have

someone watch them at the swimming pool one day a week or something like

that, otherwise I will go crazy. Sebastian is leaving for Poland on the 26th

of July. He will be at a full time camp (that's with sleeping), doing

kayaking, horseback riding, and other outdoor stuff for almost three weeks.

Then he's going off to my friends and my hubby's family and returning to the

states September 1. I know I will miss him dearly, but I will also rest a

bit. He's very helpful but he can also be a pain in the butt with his

bossing the other two around and being real noisy. Usually when the other

two are around without him it is much, much quieter.

Ok, that's it. I can't type much more. One more message to the whole group

to boast about loosing more weight and then I'm done. Karate is next.

Mojo

> Hi hon,

> How was your weekend? Ours was wonderful, you can read an update in

> the posting I just wrote MM.

>

> Thank you for the anniversary wishes they meant alot.

>

> How are you feeling? Well wanted to touch base and let you know I was

> thinking about you...

>

> Much love sweetie,

> Deanna

>

> " The LUPIES Store " Come check out our store...

> http://www.cafepress.com/thelupies

>

> " The LUPIES Web Page "

> http://www.itzarion.com/lupusgroup.html

>

> " The LUPIES online photo albums! "

> Check out what your fellow Lupies look like...

> http://www.picturetrail.com/lupies

>

June 9, 2004