guilt trip

[Guest guest]

Hey folks,

I decided to stay home today from work cause I don't feel good and now

I feel so guilty. My question to the group is, am I giving in too

easily on days I probably could go, like am I babying myself? Or, is it

good sense to take a day when I'm feeling waffley (my description)>

Lately, when I get tired, like when I was taking a walk aroung my

block, I lose my coordination. It's not a fun feeling. I was almost

home, thank God, but all of sudden, I did not have coordination. One

foot, two foot kind of thing. I think other members here have written

about this. Also, lately when I walk I feel like an ape,using the

outside of my soles for placement and the inside of my foot kind of up.

Anyone dealing with this?? I think it's also a balance thing. My toes

are numb most of the time.

So, my office is also really cool about missing work so I can do this

whenever I want. This is why I feel guilty. We are not that busy today,

I know. When do you guys give in and throw in the towel?? I had a

stomach bug yesterday and it seems to me that when I get the usual bug

that's going around, I have more symptoms with sarc. I seem to have

more fatigue, pain etc. Anyone else?? Bonnie B.

[Guest guest]

Hi Bonnie,

You have to do what is best for you. The biggest scare I ever had

was on a day that I should have taken off but didn't. Call it pig

headed, foolish pride, or just plain stupid…all I know is there must

have been a guardian angel sitting on my shoulder because I don't

have any idea how I made it home. I literally had to drag myself

inside the house. It took days before I had enough strength to be up

& around again.

I think we all know what how tough it is to recover when we push

ourselves past our limits. My thought, better to stay home & rest

when I need to rather than pay the price afterwards...a day of rest

might save many days of recovery.

I do find that the `bug of the day' hits me harder especially during

a flare. The bugs that involve my sinuses are especially bad which

is not surprising with the resident sarc. Fatigue is a big factor

too as even a simple cold will often knock me off my feet for a day

or two.

My toes go numb from time to time so I'm familiar with the feeling

you are describing. My issue is related to pressure on the nerves

from disc degeneration / arthritis. The numbness comes & goes

depending upon the pressure / position of my spine.

I believe that the medical term for the foot position that you are

describing is supination aka underpronate:

(http://www.singingpodiatrist.com/podiatry/supination.shtml)

I also found a reference to Metatarsalgia (

http://www.steenwyk.com/meta.htm ) . The symptoms of Metatarsalgia

include numbness of the toes. Supination is listed as one of the

potential causes...might be worth a visit to a podiatrist for a

professional opinion, especially since orthotics may correct the

issue.

Hope that helps. Peace.

Tony

[Guest guest]

Rose,

Thanks for your thoughtful answer. I'm fortunate to work still and more fortunate to work for a group of surgeons that treat us like family. After I posted that this morning, I had a moment of panic, thinking that another of my coworkers would not go in today either. We've had over 5 inches of rain here since Sunday and she lives on the river. Needless to say, she floods alot. I got dressed and called insaying I'd be late. Our nurse Kim told me to stay home, they would cover and they didn't want what I was carrying!! Such a sweetie! I hate this whole thing some days. And that's where I get mixed up. Right now, while I'm typing, my whole hands are hurting and cramping. I just get so annoyed, as we all do, at the limitations sarc throws our way on any given day. I make quilts. Not just on the bed type, but ones that go more into artistic, creative types. I use hand dyed batik fabrics from Bali, many colors and shades and when I want to sew, I want to SEW!!! Guess who I have to address first?? Hello, hands?? Feel like doing something today?? Hmm?? Eyes, how about you?? Can you please not drip on my quilting??? Makes the fabric wet... Y'know the drill. I'm just being cranky. Want to out and about.

I'm also really upset and had to turn the tv off because of Virigina Tech. My youngest is off to a tech school next year. We all are heart broken here.

Bonnie BSee what's free at AOL.com.

[Guest guest]

Bonnie, here comes my old reliable "It depends!" It sounds like your office staff would be fine without you for that day. The thing about sarc, or many chronic illnesses, is that when you are feeling a little "off" or "waffley" and you push yourself too hard, you can start up a major flare. So I think it's okay & smart to "baby" yourself--that means that you are paying attention to how you feel & trying to avoid getting worse. Now the "it depends" part has to do with the type of work someone does & how it would affect the workplace & workers. For example, I was a certified nurse-midwife in a busy hospital clinic practice. If I wasn't physically able, it would have been unsafe for me to cover labor & delivery, but I might be able to see some clinic patients. If I didn't feel that I could do that, I might offer to take call, getting the after-hours calls for the midwife on call. We have a lot of people call with cold symptoms, needing prescription refills, muscle pains, etc. So I would handle those calls & only call the other midwife with the more serious things, like women in labor, baby not moving, possible kidney infection, etc. That would help her get a little more sleep, so I felt that I was contributing. With our practice, if one of the midwives couldn't work, someone else usually had to give up a day off, or try to cover both clinic and labor & delivery, which is difficult if there are patients in labor. An important part of midwifery philosophy is to stay with our laboring moms; the word midwife actually means "with woman." So, unlike most doctors, we usually don't work in the office until the baby is coming, then run over & catch it.

So, in conclusion, you have to know your body & accept your limitations, accept the fact that you are not indispensable, make absolutely sure that you do not attempt to work when it would be unsafe for you or anyone else, and be creative--if you know that your coworkers will be swamped, is there something you could do from home to lighten their load?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: guilt tripDate: Tue, 17 Apr 2007 11:26:57 -0000

Hey folks, I decided to stay home today from work cause I don't feel good and now I feel so guilty. My question to the group is, am I giving in too easily on days I probably could go, like am I babying myself? Or, is it good sense to take a day when I'm feeling waffley (my description)> Lately, when I get tired, like when I was taking a walk aroung my block, I lose my coordination. It's not a fun feeling. I was almost home, thank God, but all of sudden, I did not have coordination. One foot, two foot kind of thing. I think other members here have written about this. Also, lately when I walk I feel like an ape,using the outside of my soles for placement and the inside of my foot kind of up. Anyone dealing with this?? I think it's also a balance thing. My toes are numb most of the time.So, my office is also really cool about missing work so I can do this whenever I want. This is why I feel guilty. We are not that busy today, I know. When do you guys give in and throw in the towel?? I had a stomach bug yesterday and it seems to me that when I get the usual bug that's going around, I have more symptoms with sarc. I seem to have more fatigue, pain etc. Anyone else?? Bonnie B.

Exercise your brain! Try Flexicon.

[Guest guest]

Thanks Tony,

I do pronate some now. Didn't used to though, so I'm thinking it has something to do with the numbness and balance. My neurologist was the one to ask me if my arches had always been that high. I didn't know if it was important or not. I hate when they ask a question and then don't tell you why. I think they are higher now but never really paid alot of attention to it. Thanks so much for the links. I have seen a podiatrist last year for another issue and maybe I'll give him a call. I'm kind of off doctors right now. I'd rather watch "House". Bonnie BSee what's free at AOL.com.

[Guest guest]

Tony, those are some excellent suggestions. I appreciate the information & websites regarding foot positions. I would also encourage anyone with diabetic neuropathy or other neuropathy of the feet to see a podiatrist who specializes in diabetic footwear. There are many options in footwear that improve comfort & reduce risk of blisters, pressure sores, etc. My local diabetic support group had a podiatrist speak at one of their meetings & she offered a free consultation visit to everyone at the meeting. Unfortunately, that's one of the many things that I never got around to, but I would still like to do it.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: guilt tripDate: Tue, 17 Apr 2007 13:54:05 -0000

Hi Bonnie,You have to do what is best for you. The biggest scare I ever had was on a day that I should have taken off but didn't. Call it pig headed, foolish pride, or just plain stupid…all I know is there must have been a guardian angel sitting on my shoulder because I don't have any idea how I made it home. I literally had to drag myself inside the house. It took days before I had enough strength to be up & around again. I think we all know what how tough it is to recover when we push ourselves past our limits. My thought, better to stay home & rest when I need to rather than pay the price afterwards...a day of rest might save many days of recovery.I do find that the `bug of the day' hits me harder especially during a flare. The bugs that involve my sinuses are especially bad which is not surprising with the resident sarc. Fatigue is a big factor too as even a simple cold will often knock me off my feet for a day or two.My toes go numb from time to time so I'm familiar with the feeling you are describing. My issue is related to pressure on the nerves from disc degeneration / arthritis. The numbness comes & goes depending upon the pressure / position of my spine. I believe that the medical term for the foot position that you are describing is supination aka underpronate: (http://www.singingpodiatrist.com/podiatry/supination.shtml) I also found a reference to Metatarsalgia ( http://www.steenwyk.com/meta.htm ) . The symptoms of Metatarsalgia include numbness of the toes. Supination is listed as one of the potential causes...might be worth a visit to a podiatrist for a professional opinion, especially since orthotics may correct the issue.Hope that helps. Peace.Tony

The average US Credit Score is 675. The cost to see yours: $0 by Experian.

[Guest guest]

Bonnie,

I thought I would pipe in a little here. I didn't try to pace myself as

far as work went and now I can't any longer. If you have a good group

of coworkers who understand then God bless them. I have been home for

three years now and it has taken 2 1/2 of those to get used to not

working.

I am glad that you have an artistic outlet when your body allows you to

do it. S. paints, I do mosaics and you quilt. There are days I

know that you probably can't get your hands to move but just remember

they will probably be working in a day or so, so just be patient.

Take care of your self and get better.

Terri G.

>

> Rose,

> Thanks for your thoughtful answer. I'm fortunate to work still and

more

> fortunate to work for a group of surgeons that treat us like family.

After I

> posted that this morning, I had a moment of panic, thinking that

another of my

> coworkers would not go in today either. We've had over 5 inches of

rain here since

> Sunday and she lives on the river. Needless to say, she floods alot. I

got

> dressed and called insaying I'd be late. Our nurse Kim told me to stay

home,

> they would cover and they didn't want what I was carrying!! Such a

sweetie! I

> hate this whole thing some days. And that's where I get mixed up.

Right now,

> while I'm typing, my whole hands are hurting and cramping. I just get

so annoyed,

> as we all do, at the limitations sarc throws our way on any given day.

I make

> quilts. Not just on the bed type, but ones that go more into artistic,

> creative types. I use hand dyed batik fabrics from Bali, many colors

and shades and

> when I want to sew, I want to SEW!!! Guess who I have to address

first?? Hello,

> hands?? Feel like doing something today?? Hmm?? Eyes, how about you??

Can you

> please not drip on my quilting??? Makes the fabric wet... Y'know the

drill.

> I'm just being cranky. Want to out and about.

> I'm also really upset and had to turn the tv off because of Virigina

Tech.

> My youngest is off to a tech school next year. We all are heart broken

here.

> Bonnie B

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

[Guest guest]

Bonnie, I sent a message about watching House just before I read this one from you! Great minds think alike, hmmm?

Ramblin' Rose

Moderator

From: quiltenbe@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: guilt tripDate: Tue, 17 Apr 2007 14:30:26 EDT

Thanks Tony,

I do pronate some now. Didn't used to though, so I'm thinking it has something to do with the numbness and balance. My neurologist was the one to ask me if my arches had always been that high. I didn't know if it was important or not. I hate when they ask a question and then don't tell you why. I think they are higher now but never really paid alot of attention to it. Thanks so much for the links. I have seen a podiatrist last year for another issue and maybe I'll give him a call. I'm kind of off doctors right now. I'd rather watch "House". Bonnie B

See what's free at AOL.com.

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[Guest guest]

Bonnie, I'm sorry you had a bad day today. I can relate to that. Also to the fact that I can't always do the creative stuff I want to do either. I used to sew but cutting out the patterns was murder on my back. Even when I paint I can only do it for an hour a day or I pay big consequences. I keep an rug underneath my easel cuz I'm dropping the paint brush as I get tired or my hands go numb. I tell myself that this is what creates my 'style' of painting. lol...whatever works , right? Count your blessings when you have someone who even tries to understand. take it easy and don't be so hard on yourself. hugs S.quiltenbe@... wrote: Rose, Thanks for your thoughtful answer. I'm fortunate to work still and more fortunate to work for a group of surgeons that treat us like family. After I posted that this morning, I had a moment of panic, thinking that another of my coworkers would not go in today either. We've had over 5 inches of rain here since Sunday and she lives on the river. Needless to say, she floods alot. I got dressed and called insaying I'd be late. Our nurse Kim told me to stay home, they would cover and they didn't want what I was carrying!! Such a sweetie! I hate this whole thing some days. And that's where I get mixed up.

Right now, while I'm typing, my whole hands are hurting and cramping. I just get so annoyed, as we all do, at the limitations sarc throws our way on any given day. I make quilts. Not just on the bed type, but ones that go more into artistic, creative types. I use hand dyed batik fabrics from Bali, many colors and shades and when I want to sew, I want to SEW!!! Guess who I have to address first?? Hello, hands?? Feel like doing something today?? Hmm?? Eyes, how about you?? Can you please not drip on my quilting??? Makes the fabric wet... Y'know the drill. I'm just being cranky. Want to out and about. I'm also really upset and had to turn the tv off because of Virigina Tech. My youngest is off to a tech school next year. We all are heart broken here. Bonnie B See what's free at AOL.com.

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[Guest guest]

Barb,

I can't stress enough about the importance of taking care of yourself. If you're not up to par-- stay home. There is no guilt in doing what is best for you.

When we rest-- becuase our bodies have been sending those "STOP" signals-- stomach bugs, viruses, infections, exhaustion, headaches, body aches-- the hardest part is to listen!

If you take the time you need to rest and regain your strength, you will be more effective when you are able to go into work.

As far as the coordination issues, the fatigue does make things worse. A walk around the block and the subsequent loss of balance, etc-- may be a sign that you have "desaturated." What this means is that you haven't taken a deep breath, and the air trapping that is in your lungs is sending carbon dioxide thru your blood stream, instead of oxygen.

You may want to test this theory by paying extra attention to your breathing as you exercise. Exhale FULLY--(like they have you do when you're doing a PFT test) and then inhale slowly, and really focus on that exhalation. In pulmonary rehab, they teach "pursed" lip breathing-- inhale on the exertion phase, exhale thru pursed lips, 2x as long as the inhalation.

You may see a marked difference just from doing this.

The other thing we forget is that when we are tired, or we've been exercising, even a simple walk around the block, is that our body - as we start to desaturate- has to keep the vital organs functioning. So it diverts the oxygen to the heart and brain-- and our hands and feet do become more numb.

If we are breathing shallowly, and most everyone does-- we end up hyperventilating-- the exact same problem as described above.

So- rest when you need to-- and BREATH!!!!!!!!!

tAKE care,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Right now, while I'm typing, my whole hands are hurting and cramping. I just get so annoyed, as we all do, at the limitations sarc throws our way on any given day.

Barb,

I can so relate! The hands hurting and cramping may be telling you that your B vitamin level, along with potassium-- may be out of kilter. (What the heck is kilter anyway?) But if it's off- there's physical hell to pay.

so, drink some juice, get a banana-- and if you have it-- take some MSM. We truly need those minerals.

Tracie************************************** See what's free at http://www.aol.com.

[Guest guest]

Thanks ,

I am so jealous that you can paint!! I'vs been thinking about taking some watercolor classes at my local comm.college. Don't know that I have any talent but I've always wanted to learn. My dad was a painter in his spare time. I have a few of his works. Mostly semi nudes of my mom, which are hard to display in my home right now... Kids and all... Kind of hard to explain. He was good though, and did other subjects. What do you paint?? BonnieBSee what's free at AOL.com.

[Guest guest]

Teri, what kind of work did you do?? I would go absolutely nuts if I couldn't work at all. I know what you mean. So much of how we used to define ourselves is by what we do. How we justify our lives on earth. But, that being said, I'm starting to come to the realization that I am more than my paycheck. I truly love my job but I had a cooworker say to me once" you should just do nothing on your days off so you can still work hard". I was stunned. What exactly is living if you live just to work?? I know you guys will understand. If I don't clean some or quilt or garden, yes, my hands, legs, fatigue, etc. would be less. But, what kind of life is that?? So, we pace ourselves. Most of the time we can judge when to stop. Sometimes, we even listen to that warning. heh, heh, Bonnie bSee what's free at AOL.com.

[Guest guest]

thanks, I will but some of the msm stuff. have to give it a try cause I really don't take many meds if I can help it. Bonnie BSee what's free at AOL.com.

[Guest guest]

She's really not lazy or a bi"**h, she just does not have a CLUE as to what living with this is really like for us. Similar to most people we interact with. I think of the spoon story that appeared on these hallowed boards as a good comparison. It would be nice if people "got it". I tell people now, that it's like ms and arthritis rolled into one. MS has been the one docs throw at me most so I don't feel like I'm being dramatic or anything. Most people have at least heard of ms and understand it's not something to take lightly. I actually had a cop stop me one day, pulling out of handicap space to check my handicap card. He saw me take the placard off the visor as I pulled out and thought I was a phony. I can't see well to begin with, so the placard gets in my way. I told him I had ms, cause he never would have heard of sarc. Next thing you know, he's hitting on me!! Not what I expected, that's for sure!! Bonnie BSee what's free at AOL.com.

[Guest guest]

Well said, Miss Terry!!See what's free at AOL.com.

[Guest guest]

I was pushing myself so much at work and then coming home and trying to renovate my house outside and in. I short cut my sleep, ate improperly and kept pushing myself to downsize 30 yrs of stuff in a short period of time. I own my own home and I am single and I pushed myself to the limits with rummage sales etc. Now I am paying a high price. I lost my eyesight right before Christmas and then was diagnosed with neurosarcoidosis in early February. I had all the MS symptoms but with my previous history of sarcoid attacks and my normal results coming back, they are saying it is NS. I have 3 lesions on my brain MRI and all the symptoms of memory loss, speech, falling, tripping, tremors etc and I ended up off of work for 2 months. I gradually have went back just going to 8 hrs but I am wiped when I come home and can only do about one thing and then get prepared for work. Had I known this would happen I would have done things differently but how did I know? They told me in 1980 with the major attack on my left lung and lymph nodes that I would probably only have the one attack. I have had small episodes but nothing like this.

I know I can't undo the damage. I got my eyesight back but my eye is damaged. I have gained so much weight from the monthly IV treatments and oral prednisone but they are tapering me as long as I do not have symptoms.

KatSee what's free at AOL.com.

[Guest guest]

Ahhh, Now I get the mosaicgirl moniker!! I'm a little slowwwww.... How did you get into mosaic's Terri? Do you have to break all those little pieces?? That must be hard on the old joints,no?? Bonnie BSee what's free at AOL.com.

[Guest guest]

Bonnie,

I worked in medicine most of my life; either as a medical assistant,

receptionist, office manager and the last two jobs (with the same

company) were medical assistant and then as I got worse, secretary in

the corporate office.

I have always loved learning and working with people. In the last job

(before I took the desk position) I was a medical assistant in the

OB/Gyn Department at Naval Medical Center Portsmouth. It is the largest

clinic on the eastern seaboard and I walked all day long. It helped me

stay slim and trim and I got the opportunity to mother a number of young

ladies and women and befriended a number of them that were my age. I

followed them from the beginning of the pregnancy to the end. I really

miss those days of bonding.

I did stained glass on the side and now that I am having vision issues,

I am moving on to mosaics. I occasionally will do a suncatcher or the

like but he mosaics will be more kind and giving and understanding when

I can see a straight line. Right now I am just trying to get my

workshop organized so the when I go to do some work, my brain isn't

fried just trying to find tools and such. My husband bought me some

shelves for everything and I can't quite get it straight. The nice

thing about it is when I sit to glue the pieces on, it is very easy

because it is a repetative task and my brain likes stuff like that.

I did not mean to write this much but sometimes I guess we just have

stuff stuck in us begging to come out. I hope everyone will say a

prayer for our Virginia Tech friends in order for them to get on with

the next few days with all of the media hounding them. Please pray for

those that were lost and injured. Our hearts are broken for these

families.

Terri G.

---

[Guest guest]

Bonnie, your coworker sounds like a lazy . . . okay, I'll say it: bitch. I wonder if SHE rests on her days off, so that she can work harder at her job. Doubt it. Too stupid for words.

Ramblin' Rose

Moderator

From: quiltenbe@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: guilt tripDate: Thu, 19 Apr 2007 11:24:45 EDT

Teri, what kind of work did you do?? I would go absolutely nuts if I couldn't work at all. I know what you mean. So much of how we used to define ourselves is by what we do. How we justify our lives on earth. But, that being said, I'm starting to come to the realization that I am more than my paycheck. I truly love my job but I had a cooworker say to me once" you should just do nothing on your days off so you can still work hard". I was stunned. What exactly is living if you live just to work?? I know you guys will understand. If I don't clean some or quilt or garden, yes, my hands, legs, fatigue, etc. would be less. But, what kind of life is that?? So, we pace ourselves. Most of the time we can judge when to stop. Sometimes, we even listen to that warning. heh, heh, Bonnie b

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[Guest guest]

Bonnie,

I agree with Rose. I forgot to include that in my post. I used to work

hard all week then sleep all weekend so I could do a great job at work.

How screwed up is that. Now I would be happy to only have to sleep on

the weekends. I pushed myself too hard and now I pay for it. When I am

flaring I have to sleep 3-4 hours during the day then go back to sleep 9

hours a night. Do you think I get much done now? My biggest thing is

grocery shopping; I might sleep the rest of the day after that.

I should have gotten my priorities straight first before I got like

this. But I didn't and now I deal with it. Don't make the same

mistake. Money isn't everything.

Terri G.

[Guest guest]

Bonnie, sorry if I overstated my case; you're a nicer person than I am! Maybe she isn't those things, but she sure seems insensitive. I guess I need to take some nice pills.

Ramblin' Rose

Moderator

From: quiltenbe@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: guilt tripDate: Thu, 19 Apr 2007 22:30:29 EDT

She's really not lazy or a bi"**h, she just does not have a CLUE as to what living with this is really like for us. Similar to most people we interact with. I think of the spoon story that appeared on these hallowed boards as a good comparison. It would be nice if people "got it". I tell people now, that it's like ms and arthritis rolled into one. MS has been the one docs throw at me most so I don't feel like I'm being dramatic or anything. Most people have at least heard of ms and understand it's not something to take lightly. I actually had a cop stop me one day, pulling out of handicap space to check my handicap card. He saw me take the placard off the visor as I pulled out and thought I was a phony. I can't see well to begin with, so the placard gets in my way. I told him I had ms, cause he never would have heard of sarc. Next thing you know, he's hitting on me!! Not what I expected, that's for sure!! Bonnie B

See what's free at AOL.com.

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[Guest guest]

Bonnie,

I actually (so far) have only done stained glass mosaics. I will try to

post one or two under temp photos. The last time I tried there was an

error. I have been buying plates, cups, etc at flea markets and garage

sales to try my hand at breaking them and making something from them but

I have not been inspired as of yet.

I have joined another yahoo group that is comprised of mosaic artists so

that I can learn about correct techniques, new materials, books, etc.

They are so inspiring and their work is breath taking. Even when I

don't feel like I can do anything, I browse mosaic galleries.

So, how long have you been quilting? Quilting has always intrigued me,

but I have never been able to sew. Stained glass and quilting are

similar; it is like putting a big puzzle together. You just use

different mediums. I tried painting too (watercolor, acrylic) but it

just moved too slow.

Well, I will talk to you later and will try to post a photo or two.

Terri G.

>

> Ahhh, Now I get the mosaicgirl moniker!! I'm a little slowwwww.... How

did

> you get into mosaic's Terri? Do you have to break all those little

pieces??

> That must be hard on the old joints,no?? Bonnie B

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

[Guest guest]

Tracie,

That explains a lot to me why I feel so much better when I take a deep breath of air when I am outside. I actually feel a lot better internally and could never figure out why. I know my building where I work is old with a new outside and the air is bad in there. When I go outside and I am feeling awful and I take tons of deep breaths it actually relieves some of the pain inside of me.

Thanks. I actually kept thinking like most sarcoid people that you are going nuts until you shared this.

KatSee what's free at AOL.com.

[Guest guest]

Terri, In regards to grocery shopping, before I was first diagnosed I went with my husband every week rountinely. After the symptoms and diagnosis, I couldn't go at all. By the time I got halfway thru the store, I was hurting so bad, I had to go sit in the car. There was a couple of times that I didn't, and I ended up passing out by the time we got home. That was 4 years ago. Since then my husband goes alone every week. I know he hates it, but he realizes I can't take it. Sometimes I feel so guilty when he gives me dirty looks and gets aggravated when he has to some weeks. I tried to suggest the carts with the seats, but he just won't agree to that. He doesn't want to "look different". It embarasses him. The same with other stores that I can't walk thru. If I go to the mall, I make it thru 2 stores then that's it. I have to home and take a long nap after, just like

you. Whew, did I go off about that subject, I guess your post just hit a nerve! lol Hugs, Debbie T. Co-Moderatormosaicgirl1 wrote: Bonnie,I agree with Rose. I forgot to include that in my post. I used to workhard all week then sleep all weekend so I could do a great job at work. How screwed up is that. Now I would be happy to only have to sleep onthe weekends. I pushed myself too hard and now I pay for it. When I amflaring I have to sleep 3-4 hours during the day then go back to sleep 9hours a night. Do you think I get much done now? My biggest thing isgrocery shopping; I might sleep the rest of the day after that.I should have gotten my priorities straight first before I got likethis. But I didn't and now I deal

with it. Don't make the samemistake. Money isn't everything.Terri G.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database