off topic

October 24, 2001

My daughter doesn't spit all the time, but she would spit during really bad

'meltdowns'. I have no idea why. Anybody

else?

K.

| I know this is off topic, but does anyone else have problems with

| their child spitting??? My grandson is 4 1/2 and he spits all the

| time and nothing seems to work to make him stop. Any suggestions

| that I can relay to his Mother? Thanks all.

October 24, 2001

It may be a oral motor issue.

Becky.

November 26, 2001

Re: off topic

> My daughter doesn't spit all the time, but she would spit during really

bad 'meltdowns'. I have no idea why. Anybody

> else?

>

> K.

>

> | I know this is off topic, but does anyone else have problems with

> | their child spitting

Our son's class had a " spitter " . It was absolutely horrible, no one wanted

to be around him! In the pool, he spit at my husband and my dh got a big

mouthful of water and spit it back at the boy! He never spit at my dh

again. Stop the habit at all costs! It's not healthy at all.

Love, Becky from OR

January 17, 2011

Well, Marla, mine are still plugged into a timer, so they are on from 4pm to 1am! I packed away a few more decorations today. Bit by bit!

Ramblin' RoseModerator COLTS STILL ROCK!

To: Neurosarcoidosis From: mebramer@...Date: Sat, 15 Jan 2011 20:34:57 -0700Subject: Re: Methotrexate reactions--rant

We still have our lights up too, but I forget to turn them on, but our cul da sac has 3 houses that are still turning them on, and I see a lot of business with them still on too. I've heard of people keeping a tree up all year and putting like now it would be valentines, then Easter, then I'm not sure what, I guess whatever you want. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Don't worry about your office; I just took down my Christmas tree today! We put it out back by the dining room window, like last year. It will probably stay there until spring, when we'll put it in the back of the yard to add to the "small animal habitat." I sat on a stool last night picking off every piece of tinsel; don't want a little chipmunk or bunny getting a bowel obstruction. A friend gave me some pine cones tonight, so the little kids & I will coat them with peanut butter & string them on the tree. Last year we added birdseed, but the squirrels got it all anyway, so this year I'm just using the peanut butter--less mess! Also going to string some old apples out there. Now I just need to start putting some of the other decorations away! The kids are teasing me because mine is the only house in the neighborhood with the Christmas lights still on. Lots of people leave the lights up, but nobody else is still turning them on! I don't care; it's makes me happy, so why not?!? Besides, it's easy for people to find our house.

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!)

To: Neurosarcoidosis From: mebramer@...Date: Thu, 13 Jan 2011 11:47:14 -0700

Subject: Re: Methotrexate reactions--rantThanks Rose, I know I'm doing better, I just thing that was not a good drug for me, and I don't feel the anxiety any more. If I get really tired, I can feel irritable, and I will take 1mg Lorazapam, which I take at night for the kicking legs, and it calms me in a nice way. less is better I'm thinking. I really need to get into my office and clean it up, I let it go over the holidays, but now's the time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Marla, sounds like things are starting to level out again for you. You're right that drugs can mess us up, but sometimes it's just the wrong drug for our system or situation. I've not heard of Lexapro for night sweats, but if it helps maybe another drug in that class would work, without all the side effects. Enjoy your study; I'm in a group that meets every week. We missed 3 weeks due to the holidays & folks being gone, so I'm looking forward to getting started again.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Tue, 11 Jan 2011 11:36:49 -0700

Subject: Re: Methotrexate reactions--rantBefore you start reading this, there is some Religion talk in it. Thanks a ton Rose, I think I figured one problem, my FP put me on Lexapro, for night sweats, at first I thought it was working, then had some night sweats, so I quit, then I thought well maybe it helped a little, went back on, that was last week, and I was a mess, the anxiety was crazy, now this week I feel so much better, I went off it again, I think it interacting in a neg. way with some of my other drugs, I really do feel much better, it's crazy what drugs do to us. I also started a Bible Study last night, it's a Beth study, don't know if any of you have done her studies before but there awesome, we are doing the book of Revelation, and I'm doing it with some nurses I use to work with at the hospital's L & D, so I am really excited about that, last night was my first night, and it was so good just to see these women I haven't seen in forever, and it all started with one of them calling me and asking if I still do Kay, so she ordered so when I took her her order we of started talking and she told me about this BS, and I was so excited, I just feel God lead me to her, earlier that day I was telling myself I need a good Bible Study, and he answered. How awesome is that. So I think I'm on the right road, and yes I do have a wonderful therapist to talk to, and I can call her whenever I need her. funny story, I was going to her every week when we were fighting for the Remicade, I was getting really depressed, she really helped me, and then I got the Remicade and felt better, after a couple more sessions she told me I didn't have to keep coming every week, I was doing good, and just call when I needed her. However, I have a son who has since he was little and still does pull his eyelashes out, he says he does it when hes bored? Other wise he's OK, sometimes he says I need to see Joe's Dr. Joe is my Bipolar child, who is doing very well right now, in fact awesome. So I tell my other son OK, but the next day he changes his mind. I think a lot of us have some kind of little annoying habit, it's just life. I pull my hair out when I'm reading in bed, lol. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Marla, thanks for the input. You're not crazy, you just do crazy things! There's a difference. I have a habit of pulling hangnails on my fingers. I know I should get the clippers & cut them off, but for some reason I keep picking & pulling until my finger is sore & bleeding. I used to run my fingers through my hair & pull out tangles. I would do that while watching TV until I had a pile of hair & my scalp was sore. Luckily my hair was so thick that it wasn't obvious. There is an actual medical condition, a type of OCD if I remember right, where people can pull out so much hair they have bald spots. This habit (or compulsion?) of pulling out my hair was one reason I started keeping it short. Marla, if you really want to quit biting your nails, try Bitter Yuk. You can get it at pet stores. I used it to keep my dog Annie from eating the carpet. It is NASTY! But there is the possibility that you will just substitute something else if you do it to cope with anxiety. My ex-husband used to smoke AND bite chew his nails. I would tell him that he was allowed just one oral fixation; didn't work! It must be very scary, wondering if the Remicade is still working. I don't remember if you are in therapy; maybe you need to talk to someone about your fears & anxiety. If you can't or don't want therapy, try journaling about it all. Just start writing--don't worry about spelling, punctuation, etc.--just write. It's hard for me to do, because I want to stop & rewrite (edit) what I'm writing, but when I just let the words flow, it releases the feelings. That can be frightening, but those feelings are there anyway. When you acknowledge them, you can actually deal with them, rather than living with this constant free-floating anxiety or (in my case) simmering resentment/anger; whatever is there, under the surface. This process can unearth some really painful memories, so you need someone to lean on if needed. Marla, you can call me any time, day or night, for this or any other situations. All those years catching babies gave me the ability to wake up at weird hours & go back to sleep without a problem. So you can really call me any time. Also, you don't have to keep what you've written; you may want to shred or burn it. I've written some pretty nasty stuff about people I love, that I would never want them to find later, but I had issues that I needed to deal with. So I destroy the writings once they've served their purpose.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: mebramer@...Date: Sat, 8 Jan 2011 18:19:48 -0700 Subject: Re: Methotrexate reactions--rant

Sorry guys I've been so busy, not sure what I've been doing, or don't remember, but I haven't had time to sit down at my computer, and my son's lap top cord broke, so while waiting for his cord to come he hijack mine, his came today, yea! I was reading on my phone, but replying on my phone is just too much for me. Anyway, I've been on Methotrexate for 7 years, I just this last year muscle cramps in places other then the legs, which I've had forever. but now I get them in strange places too. sometimes they leave a bruised feeling. I get infections on my finger nails too, but that's because I bite at the skin around my nails all the time, it's awful, and I need to stop doing it, I put antibiotic ointment on them, and they heal up, which is good. There are these great "blister" bandage, that heal really good, if you can't get one to heal, why do I know this, well I also pull the dry skin of my heels when I forget to do what Rose said you should do, put something thick on your hands, or feet when dry and put gloves or socks on them overnight, when I remember to do that I don't have a problem, when I don't I pull the skin of the bottom of my feet, then I end up putting a blister bandage on it, it heals it, when I usually leave it on until it starts to fall off, by then my sore is healed, there great. I guess now you all know how crazy I am. I need to be doing something while watching TV, I found out that I can do solitaire on my phone, which keeps my hands busy! Although I have been having some anxious feelings, I had my Remicade at the increased dose, but don't feel better, the doctor said it may take a couple dosages before I notice a difference, so I'm trying to be patient. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

This started out as a simple response, but turned into a one-woman gripe session, so get comfy! Regarding the leg cramps, according to drugs.com, muscle cramps are not listed as a side effect. However, that doesn't mean that an individual can't experience that as a side effect. I would look to other possible causes. Do you drink a lot of soda? The phosphorous can inhibit calcium absorption in your body, leading to cramps. Are you getting enough calcium? Too much or too little may cause cramps. Think about any other changes in your lifestyle recently--exercise, foods, shoes, etc. I have been plagued with calf cramps (Charley horses) and foot cramps since my teens, despite being a milk drinker & walker for most of my life. Shortly after the systemic sarc symptoms began in 2000-2001, I started having muscle cramps all over my body--places you wouldn't think of having muscles. The outside of my ankles, in my arms near my elbow while gesturing, just weird places. Plus all the usual muscle cramps. I tried quinine water, which didn't help, then my neuro put me on quinine sulfate tablets, which worked wonderfully for years, until the FDA decided to take it off the market. Arrrrggghhhhh! I don't understand the thinking of these agencies. Of course, quinine carries risks; every drug on the market does. The whole point is to weigh the risks & benefits. So the past few years I've just dealt with the cramps. When they get really bad, I take Baclofen for a few days & that seems to quiet them down a bit, but it doesn't work as well as the quinine. As long as I'm griping about regulatory agencies, I'll get this off my chest: it really bugs me when a bunch of toys are recalled because of small parts that can cause choking, or similar things. (I'm not talking about lead or cadmium.) The world is crammed with small objects that children can choke on. Maybe we should scoop up all the pebbles & lock them away somewhere, or ban marbles. The issue is adult supervision & common sense. Many years ago there was a popular toy called Jarts (I think). They were large feathered darts with a heavy metal tip. You placed rings on the ground & tossed the Jarts at the rings. Obviously, the tip could hurt someone if you hit them in the head with it, so we never let our kids play unless an adult was present. Well, apparently a very small number of children were killed over several years time from being hit in the head with a Jart, so the toy was banned. I don't want to sound uncaring, but thousands of kids are killed or seriously injured riding bikes, skateboards & skates, but they aren't banned! Same for riding in cars. Unfortunately, we will never make the world totally safe, for children or adults. Kids can hit each other with rocks, sticks, horseshoes, whatever. You teach & supervise them as best you can. Drugs, by their very purpose, are harmful. The trick is to reduce the potential for harm as much as possible, and then make educated judgments on the potential harm we can accept for the potential benefit. The FDA has done great good, such as slowing the approval of Thalidomide, while it was being widely used in Europe. As a result, there were far fewer babies born with severe limb defects in the U.S. But sometimes it feels like we have an overprotective, fussy old aunt--you might poke someone's eye out! You'll fall & break your neck! Are American consumers really so stupid that we can't make our own decisions, "choose our own poison?" Maybe we are. Oh, well, I'm done ranting now. I'll be interested to hear y'all's opinions of all this.Oh, almost forgot your fingernail problem! I don't know if you've tried this, but I used to do it when I was working in the hospital & washing my hands dozens of times a day. Even now, in the winter when my skin starts cracking at my thumbs, I do this & it helps. For just cracking, at bedtime, coat your hands liberally in baby oil or vaseline, then put on vinyl gloves like used in the hospital. Repeat nightly as needed. If it's just the thumbs, I cut the fingers off the gloves & put them over my thumbs to sleep, after applying salve to the thumbs. You could do the same thing with antibiotic ointment. Hope this suggestions helps. I'd also consider seeing a dermatologist; also rule out a fungal infection, which can cause problems like this. That's more common in the feet, but we are uncommon people, so consider everything!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Wed, 5 Jan 2011 08:11:39 +1100> Subject: Methotrexate reactions> > Hi guys,> > Happy New Year to us all!> > I'm just at 2 weeks on Meth now, and have started getting the occasional leg cramps when I'm in bed. Very very painful, and they leave my calves feeling quite bruised. It's a new symptom for me, anyway, and I'm wonderful if they're related to the Meth? Has anyone else had this as a side effect?> > I'm also getting small infections at the sides of my fingernails - not a huge problem of themselves, but they're not clearing up with antiseptic cream / salt water soaks etc - I have an artificial hip, and the biggest worry is that the infection will travel to the joint, in which case I could end up with major surgery again to remove it, clean out the infection, and replace it (shudder) - so I'm off to hunt down some emergency antibiotics today. > > It's weird on the Meth - the infected areas don't particularly hurt, and aren't incredibly red and inflamed like you'd normally get - really obvious evidence of how the Meth is suppressing my immune system!> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

May 17, 2011

A big AMEN to that one! Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

, I've noticed your email address is precise sewing. Do you sew professionally, as a hobby, or what? I used to sew all kinds of stuff. Made lots of my kids' clothes--Calvin Klein jeans, with the stitch pattern on the pockets & all. I made heavy-duty winter coats for my son & husband, flannel shirts with all the plaid matching at the seams & the pockets on the bias! Plus pearlized snaps. I made hoodies, all kinds of tee shirts, blouses with ruffles & pleats, then cross stitch or embroidery designs on them. Stuffed animals, personalized Christmas ornaments. I look back & think, " How on earth did I do all that? " I worked full-time, cooked regular meals (not cold cuts & chips; oops.), sewed, gardened & canned (30 qts. of cherries one year!), helped coach softball, plus practiced with all 3 kids. Now if I get my partials in & put on something besides pj's, it's a productive day. To quote a country song (sorry I don't remember who wrote or performed it), " I'm too young to feel this damn old. " Amen to that.

Ramblin' RoseCo-owner/Moderator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:16:34 -0700

Subject: Re: Re: Eye question - retianl detachment or some-other

Hey Mike,

On the MRI it looks like a big brain tumor that ingulfed my optic chiasm and some brain matter. but all my blood work and spinal fluid was normal so they did a brain biopsy to determine what it was. The results showed lymphocytic infiltrate with granulomatous features. The work up for systemic sarcoidosis was negative and CSF showed no evidence of infection but did show lymphocytic pleocytosis. I am on Prednisone now and slowly decreasing since the last MRI at the end of april showed no sign of inflammation in the optic nerves and brain. The swollen optic nerves took most of my sight in my left eye. Just trying to get through the side effects of the pred. and the new way of looking at things with one eye.

good luck.

To: Neurosarcoidosis

Sent: Sun, May 15, 2011 9:07:54 PMSubject: Re: Eye question - retianl detachment or some-other

Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it.

For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike

>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried.

> I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont

>

May 17, 2011

I sew all the time. I just recovered my wheel chair for the 2nd time. I also make all my grandkids clothes. Last year I made the boys suede jackets.

And I do the embroidery and all kinds of embellishments too. Got to keep busy.

Jackie

Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to inte rpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 17, 2011

I think it might have been a Garth song

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Tue, 17 May 2011 11:49:54 -0600Subject: Re: Off topic

A big AMEN to that one! Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

, I've noticed your email address is precise sewing. Do you sew professionally, as a hobby, or what? I used to sew all kinds of stuff. Made lots of my kids' clothes--Calvin Klein jeans, with the stitch pattern on the pockets & all. I made heavy-duty winter coats for my son & husband, flannel shirts with all the plaid matching at the seams & the pockets on the bias! Plus pearlized snaps. I made hoodies, all kinds of tee shirts, blouses with ruffles & pleats, then cross stitch or embroidery designs on them. Stuffed animals, personalized Christmas ornaments. I look back & think, "How on earth did I do all that?" I worked full-time, cooked regular meals (not cold cuts & chips; oops.), sewed, gardened & canned (30 qts. of cherries one year!), helped coach softball, plus practiced with all 3 kids. Now if I get my partials in & put on something besides pj's, it's a productive day. To quote a country song (sorry I don't remember who wrote or performed it), "I'm too young to feel this damn old." Amen to that.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:16:34 -0700Subject: Re: Re: Eye question - retianl detachment or some-other

Hey Mike,

On the MRI it looks like a big brain tumor that ingulfed my optic chiasm and some brain matter. but all my blood work and spinal fluid was normal so they did a brain biopsy to determine what it was. The results showed lymphocytic infiltrate with granulomatous features. The work up for systemic sarcoidosis was negative and CSF showed no evidence of infection but did show lymphocytic pleocytosis. I am on Prednisone now and slowly decreasing since the last MRI at the end of april showed no sign of inflammation in the optic nerves and brain. The swollen optic nerves took most of my sight in my left eye. Just trying to get through the side effects of the pred. and the new way of looking at things with one eye.

good luck.

To: Neurosarcoidosis Sent: Sun, May 15, 2011 9:07:54 PMSubject: Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 17, 2011

I wish I could still do that. I used to crochet a lot; thinking of taking that up again. I also used to do cross stitch, but between the shaky hands & problems with close-up vision, gave that up too. My first great-greatgrandbaby is due in 3 mos. It would be nice to crochet him a blanket.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Tue, 17 May 2011 13:25:23 -0500Subject: Re: Off topic

I sew all the time. I just recovered my wheel chair for the 2nd time. I also make all my grandkids clothes. Last year I made the boys suede jackets.

And I do the embroidery and all kinds of embellishments too. Got to keep busy.

Jackie

Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to inte rpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 17, 2011

Hey Rose,

I picked that email address because I was trying to start my own business in alterations. It was going good until.....well we know the rest...now I am trying to figure things out with the sight I have left. I picked precise sewing because I am so picky about how things look they have to be just so.... precise I am not quite as ambisious as you sewing all the kids clothes and all, but I do sew their costumes every year for halloween. They show me a picture of what they want to be and I can sew it. Right now, since I am unable to do my regular job, I am trying to sew things I can sell on a website called etsy.com. Since I can not drive far because of my vision and the prednisone side effects are taking its toll on me, I am trying to keep busy and earn $$ at the same time, so I am trying to make these purses for teens and sell on that sight. It is very challenging, I hate that it takes me a whole day

to make one thing,when it just took me a couple of hours before.

Thanks for noticing. you are very observant.

To: neurosarcoidosis Sent: Mon, May 16, 2011 10:14:59 PMSubject: Off topic

, I've noticed your email address is precise sewing. Do you sew professionally, as a hobby, or what? I used to sew all kinds of stuff. Made lots of my kids' clothes--Calvin Klein jeans, with the stitch pattern on the pockets & all. I made heavy-duty winter coats for my son & husband, flannel shirts with all the plaid matching at the seams & the pockets on the bias! Plus pearlized snaps. I made hoodies, all kinds of tee shirts, blouses with ruffles & pleats, then cross stitch or embroidery designs on them. Stuffed animals, personalized Christmas ornaments. I look back & think, "How on earth did I do all that?" I worked full-time, cooked regular meals (not cold cuts & chips; oops.), sewed, gardened & canned (30 qts. of cherries one year!), helped coach softball, plus practiced with all 3 kids. Now if I get my partials in & put on something besides pj's,

it's a productive day. To quote a country song (sorry I don't remember who wrote or performed it), "I'm too young to feel this damn old." Amen to that.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:16:34 -0700Subject: Re: Re: Eye question - retianl detachment or some-other

Hey Mike,

On the MRI it looks like a big brain tumor that ingulfed my optic chiasm and some brain matter. but all my blood work and spinal fluid was normal so they did a brain biopsy to determine what it was. The results showed lymphocytic infiltrate with granulomatous features. The work up for systemic sarcoidosis was negative and CSF showed no evidence of infection but did show lymphocytic pleocytosis. I am on Prednisone now and slowly decreasing since the last MRI at the end of april showed no sign of inflammation in the optic nerves and brain. The swollen optic nerves took most of my sight in my left eye. Just trying to get through the side effects of the pred. and the new way of looking at things with one eye.

good luck.

To: Neurosarcoidosis Sent: Sun, May 15, 2011 9:07:54 PMSubject: Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to

wait for the MRI and the neurologist to interpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an

appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may! be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 17, 2011

I picked up crocheting, after the sewing thing was getting too frustrating and was straining my one eye I have left. Now I am crocheting hats. Some days I will try and sew in the morning when my vision is better and then at night to keep from eating and drinking a lot of fluids I will keep my hands busy and make a hat. My mom bought me this book of 100 hat patterns. I have 94 patterns left to make. I told my family members to pick a hat and any color and I will make it for them. My sister wore her hat to work one day and four people wanted a hat just like it. My sister asked me what I wanted to charge for the hats and they then placed their order and a week later they got their hat. I wish it was always

that easy.

To: neurosarcoidosis Sent: Tue, May 17, 2011 2:49:54 PMSubject: RE: Off topic

I wish I could still do that. I used to crochet a lot; thinking of taking that up again. I also used to do cross stitch, but between the shaky hands & problems with close-up vision, gave that up too. My first great-greatgrandbaby is due in 3 mos. It would be nice to crochet him a blanket.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Tue, 17 May 2011 13:25:23 -0500Subject: Re: Off topic

I sew all the time. I just recovered my wheel chair for the 2nd time. I also make all my grandkids clothes. Last year I made the boys suede jackets.

And I do the embroidery and all kinds of embellishments too. Got to keep busy.

Jackie

Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to

wait for the MRI and the neurologist to inte rpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an

appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some s! urgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 17, 2011

Oh, my! I think alterations are much tougher than starting something from scratch. I could never get alterations right. I don't know how old you are , but I'm 62. When I was a kid, all the girls in my school had to take Home Ec in the 7th grade and again in 9th. The boys, of course, took shop, as this was before the revolution. I was horrible at sewing. In 7th grade we made a few small things, hankies or something, then for our term grade (like a final exam) we had to make a blouse, The sleeves were pretty bad, but the worst was the buttonholes. She didn't like my buttonholes, so I had to rip them out & do them over. I don't remember how many times she made me rip those things out, but by the time I was done, there were holes down the front of the blouse where the buttonholes were supposed to be, and I absolutely hated sewing! 2 years later I'm back in Home Ec, with the same teacher. The cooking part was great; I learned how to make yeast rolls, which I still do nearly 50 years later. But then came sewing. This time we had to make a dress. She didn't give us any guidance on the pattern, fabric, etc. I picked out a pattern I thought was pretty & bought this bright, bright blue fabric. The dress was a struggle, like the blouse, but I finally finished it. I put it on & hated it; it didn't fit my build at all & was so bright I couldn't possible hide in a corner or anything! The worst part was that we had to wear them in a fashion show for the entire school (less than 400 h.s. students, but still . . . . ). I begged her to let me out of it, but the woman had no mercy. I wore that stupid dress in that show & then threw it in the trash. I really did not intend to ever touch a sewing machine again! But after I was married with children, I decided to give it another try & found that I was good at it.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Tue, 17 May 2011 19:46:02 -0700Subject: Re: Off topic

Hey Rose,

I picked that email address because I was trying to start my own business in alterations. It was going good until.....well we know the rest...now I am trying to figure things out with the sight I have left. I picked precise sewing because I am so picky about how things look they have to be just so.... precise I am not quite as ambisious as you sewing all the kids clothes and all, but I do sew their costumes every year for halloween. They show me a picture of what they want to be and I can sew it. Right now, since I am unable to do my regular job, I am trying to sew things I can sell on a website called etsy.com. Since I can not drive far because of my vision and the prednisone side effects are taking its toll on me, I am trying to keep busy and earn $$ at the same time, so I am trying to make these purses for teens and sell on that sight. It is very challenging, I hate that it takes me a whole day to make one thing,when it just took me a couple of hours before.

Thanks for noticing. you are very observant.

To: neurosarcoidosis Sent: Mon, May 16, 2011 10:14:59 PMSubject: Off topic

, I've noticed your email address is precise sewing. Do you sew professionally, as a hobby, or what? I used to sew all kinds of stuff. Made lots of my kids' clothes--Calvin Klein jeans, with the stitch pattern on the pockets & all. I made heavy-duty winter coats for my son & husband, flannel shirts with all the plaid matching at the seams & the pockets on the bias! Plus pearlized snaps. I made hoodies, all kinds of tee shirts, blouses with ruffles & pleats, then cross stitch or embroidery designs on them. Stuffed animals, personalized Christmas ornaments. I look back & think, "How on earth did I do all that?" I worked full-time, cooked regular meals (not cold cuts & chips; oops.), sewed, gardened & canned (30 qts. of cherries one year!), helped coach softball, plus practiced with all 3 kids. Now if I get my partials in & put on something besides pj's, it's a productive day. To quote a country song (sorry I don't remember who wrote or performed it), "I'm too young to feel this damn old." Amen to that.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:16:34 -0700Subject: Re: Re: Eye question - retianl detachment or some-other

Hey Mike,

On the MRI it looks like a big brain tumor that ingulfed my optic chiasm and some brain matter. but all my blood work and spinal fluid was normal so they did a brain biopsy to determine what it was. The results showed lymphocytic infiltrate with granulomatous features. The work up for systemic sarcoidosis was negative and CSF showed no evidence of infection but did show lymphocytic pleocytosis. I am on Prednisone now and slowly decreasing since the last MRI at the end of april showed no sign of inflammation in the optic nerves and brain. The swollen optic nerves took most of my sight in my left eye. Just trying to get through the side effects of the pred. and the new way of looking at things with one eye.

good luck.

To: Neurosarcoidosis Sent: Sun, May 15, 2011 9:07:54 PMSubject: Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may! be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 17, 2011

That hat book sounds cool! I'll bet everybody loves their hats. One of the first things I crocheted was a huge afghan made up of 120 granny hexagons (like granny squares, but 6-sided). It had 4 or 5 shades of blue, plus white. It was absolutely gorgeous. I made it for my older brother & his sister. I later made another one for a friend; that one was shades of brown, orange & yellow. It was pretty too, but not as nice as the blue one. I wish I'd taken a picture of that first afghan, but I wasn't so much of a camera nut then as I am now! Well, it's after midnight here, so I'm going to wrap it up & try to sleep.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Tue, 17 May 2011 20:03:45 -0700Subject: Re: Off topic

I picked up crocheting, after the sewing thing was getting too frustrating and was straining my one eye I have left. Now I am crocheting hats. Some days I will try and sew in the morning when my vision is better and then at night to keep from eating and drinking a lot of fluids I will keep my hands busy and make a hat. My mom bought me this book of 100 hat patterns. I have 94 patterns left to make. I told my family members to pick a hat and any color and I will make it for them. My sister wore her hat to work one day and four people wanted a hat just like it. My sister asked me what I wanted to charge for the hats and they then placed their order and a week later they got their hat. I wish it was always that easy.

To: neurosarcoidosis Sent: Tue, May 17, 2011 2:49:54 PMSubject: RE: Off topic

I wish I could still do that. I used to crochet a lot; thinking of taking that up again. I also used to do cross stitch, but between the shaky hands & problems with close-up vision, gave that up too. My first great-greatgrandbaby is due in 3 mos. It would be nice to crochet him a blanket.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Tue, 17 May 2011 13:25:23 -0500Subject: Re: Off topic

I sew all the time. I just recovered my wheel chair for the 2nd time. I also make all my grandkids clothes. Last year I made the boys suede jackets.

And I do the embroidery and all kinds of embellishments too. Got to keep busy.

Jackie

Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to inte rpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some s! urgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 17, 2011

Yeah, that is how I learned how to sew too, through the home ec class in high school. don't remember much about the class, but how to sew really stuck. I graduated high school in 1984. I also took sewing in 4-H for nine years and displayed my projects in the county fair as well as did the fashion show at the fair, making our own entries. I have made suits and formal dresses and skirts. The biggest thing I have accomplished was making my wedding dress. My daughter loves it and can't wait until she can wear it. ....and to think I almost cut it up to make a baptismal gown for my kids when they were born.

To: neurosarcoidosis Sent: Tue, May 17, 2011 10:57:47 PMSubject: RE: Off topic

Oh, my! I think alterations are much tougher than starting something from scratch. I could never get alterations right. I don't know how old you are , but I'm 62. When I was a kid, all the girls in my school had to take Home Ec in the 7th grade and again in 9th. The boys, of course, took shop, as this was before the revolution. I was horrible at sewing. In 7th grade we made a few small things, hankies or something, then for our term grade (like a final exam) we had to make a blouse, The sleeves were pretty bad, but the worst was the buttonholes. She didn't like my buttonholes, so I had to rip them out & do them over. I don't remember how many times she made me rip those things out, but by the time I was done, there were holes down the front of the blouse where the buttonholes were supposed to be, and I absolutely hated sewing! 2 years later I'm back in Home Ec, with the

same teacher. The cooking part was great; I learned how to make yeast rolls, which I still do nearly 50 years later. But then came sewing. This time we had to make a dress. She didn't give us any guidance on the pattern, fabric, etc. I picked out a pattern I thought was pretty & bought this bright, bright blue fabric. The dress was a struggle, like the blouse, but I finally finished it. I put it on & hated it; it didn't fit my build at all & was so bright I couldn't possible hide in a corner or anything! The worst part was that we had to wear them in a fashion show for the entire school (less than 400 h.s. students, but still . . . . ). I begged her to let me out of it, but the woman had no mercy. I wore that stupid dress in that show & then threw it in the trash. I really did not intend to ever touch a sewing machine again! But after I was married with children, I

decided to give it another try & found that I was good at it.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Tue, 17 May 2011 19:46:02 -0700Subject: Re: Off topic

Hey Rose,

I picked that email address because I was trying to start my own business in alterations. It was going good until.....well we know the rest...now I am trying to figure things out with the sight I have left. I picked precise sewing because I am so picky about how things look they have to be just so.... precise I am not quite as ambisious as you sewing all the kids clothes and all, but I do sew their costumes every year for halloween. They show me a picture of what they want to be and I can sew it. Right now, since I am unable to do my regular job, I am trying to sew things I can sell on a website called etsy.com. Since I can not drive far because of my vision and the prednisone side effects are taking its toll on me, I am trying to keep busy and earn $$ at the same time, so I am trying to make these purses for teens and sell on that sight. It is very

challenging, I hate that it takes me a whole day to make one thing,when it just took me a couple of hours before.

Thanks for noticing. you are very observant.

To: neurosarcoidosis Sent: Mon, May 16, 2011 10:14:59 PMSubject: Off topic , I've noticed your email address is precise sewing. Do you sew professionally, as a hobby, or what? I used to sew all kinds of stuff. Made lots of my kids' clothes--Calvin Klein jeans, with the stitch pattern on the pockets & all. I made heavy-duty winter coats for my son & husband, flannel shirts with all the plaid matching at the seams & the pockets on the bias! Plus pearlized snaps. I made hoodies, all kinds of tee shirts, blouses with ruffles & pleats, then cross stitch or embroidery designs on them. Stuffed animals, personalized Christmas ornaments. I look back & think, "How on earth did I do all that?" I worked full-time, cooked regular meals (not cold cuts & chips; oops.), sewed, gardened & canned (30 qts. of cherries one year!), helped coach softball, plus practiced with all 3 kids. Now if I get my partials in & put on something

besides pj's, it's a productive day. To quote a country song (sorry I don't remember who wrote or performed it), "I'm too young to feel this damn old." Amen to that.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:16:34 -0700Subject: Re: Re: Eye question - retianl detachment or some-other

Hey Mike,

On the MRI it looks like a big brain tumor that ingulfed my optic chiasm and some brain matter. but all my blood work and spinal fluid was normal so they did a brain biopsy to determine what it was. The results showed lymphocytic infiltrate with granulomatous features. The work up for systemic sarcoidosis was negative and CSF showed no evidence of infection but did show lymphocytic pleocytosis. I am on Prednisone now and slowly decreasing since the last MRI at the end of april showed no sign of inflammation in the optic nerves and brain. The swollen optic nerves took most of my sight in my left eye. Just trying to get through the side effects of the pred. and the new way of looking at things with one eye.

good luck.

To: Neurosarcoidosis Sent: Sun, May 15, 2011 9:07:54 PMSubject: Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to

wait for the MRI and the neurologist to interpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an

appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some su! rgical intervention may! be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 17, 2011

I have made many afghans too. some of them I still have and so do my parents. They also were entered in the county fair for 4-H. I am trying to teach my daughter how to crochet, but she is catching on to the quilting thing instead. She loves do design them. This is her fourth year in quilting through 4-H and she keeps wanting to out do the year before.

Crocheting I find is easier to carry around than the sewing machine.

Good night for now.

To: neurosarcoidosis Sent: Tue, May 17, 2011 11:03:12 PMSubject: RE: Off topic

That hat book sounds cool! I'll bet everybody loves their hats. One of the first things I crocheted was a huge afghan made up of 120 granny hexagons (like granny squares, but 6-sided). It had 4 or 5 shades of blue, plus white. It was absolutely gorgeous. I made it for my older brother & his sister. I later made another one for a friend; that one was shades of brown, orange & yellow. It was pretty too, but not as nice as the blue one. I wish I'd taken a picture of that first afghan, but I wasn't so much of a camera nut then as I am now! Well, it's after midnight here, so I'm going to wrap it up & try to sleep.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Tue, 17 May 2011 20:03:45 -0700Subject: Re: Off topic

I picked up crocheting, after the sewing thing was getting too frustrating and was straining my one eye I have left. Now I am crocheting hats. Some days I will try and sew in the morning when my vision is better and then at night to keep from eating and drinking a lot of fluids I will keep my hands busy and make a hat. My mom bought me this book of 100 hat patterns. I have 94 patterns left to make. I told my family members to pick a hat and any color and I will make it for them. My sister wore her hat to work one day and four people wanted a hat just like it. My sister asked me what I wanted to charge for the hats and they then placed their order and a week later they got their hat. I wish it was always that easy.

To: neurosarcoidosis Sent: Tue, May 17, 2011 2:49:54 PMSubject: RE: Off topic I wish I could still do that. I used to crochet a lot; thinking of taking that up again. I also used to do cross stitch, but between the shaky hands & problems with close-up vision, gave that up too. My first great-greatgrandbaby is due in 3 mos. It would be nice to crochet him a blanket.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Tue, 17 May 2011 13:25:23 -0500Subject: Re: Off topic

I sew all the time. I just recovered my wheel chair for the 2nd time. I also make all my grandkids clothes. Last year I made the boys suede jackets.

And I do the embroidery and all kinds of embellishments too. Got to keep busy.

Jackie

Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to

wait for the MRI and the neurologist to inte rpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an

appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some s! ! urgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 18, 2011

I would rather build my own than fix someone else's. I love to sew and I think I am running out of people to give my creations to. lol But I will continue. Made granddaughters prom dresses this year. I get tired so easy that it takes longer. but I got it done.

I love to crochet too. I lose count a lot and end up either giving up or tearing it apart at least some of it. Oh well it keep me out of the bars. lol

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmoml ogist (as neccessary). From what I have read online, some surgical intervention may! be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 18, 2011

You are brave to make prom dresses! I made a long gown for my older daughter one year, trying to save money. Well, you know that time is money & I spent several weekends & nights working on that danged dress.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Wed, 18 May 2011 04:16:06 -0500Subject: Re: Off topic

I would rather build my own than fix someone else's. I love to sew and I think I am running out of people to give my creations to. lol But I will continue. Made granddaughters prom dresses this year. I get tired so easy that it takes longer. but I got it done.

I love to crochet too. I lose count a lot and end up either giving up or tearing it apart at least some of it. Oh well it keep me out of the bars. lol

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmoml ogist (as neccessary). From what I have read online, some surgical intervention may! be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 18, 2011

It's interesting how many of us sew, I don't do so much anymore, but I made my wedding dress too, and a lot of my clothes, my daughters baptismal gown, I love to sew, it's really a stress release, but I haven't done it in awhile. I do a lot of fixing, and alterations, hem all my husbands suits, etc.... I use to do blankets, esp baby, and I'm sure I will again some day, I hope!!

My husband even sews, but not clothes, he makes things he uses on his sail boat, there called butt buckets. Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

A big AMEN to that one! Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

, I've noticed your email address is precise sewing. Do you sew professionally, as a hobby, or what? I used to sew all kinds of stuff. Made lots of my kids' clothes--Calvin Klein jeans, with the stitch pattern on the pockets & all. I made heavy-duty winter coats for my son & husband, flannel shirts with all the plaid matching at the seams & the pockets on the bias! Plus pearlized snaps. I made hoodies, all kinds of tee shirts, blouses with ruffles & pleats, then cross stitch or embroidery designs on them. Stuffed animals, personalized Christmas ornaments. I look back & think, " How on earth did I do all that? " I worked full-time, cooked regular meals (not cold cuts & chips; oops.), sewed, gardened & canned (30 qts. of cherries one year!), helped coach softball, plus practiced with all 3 kids. Now if I get my partials in & put on something besides pj's, it's a productive day. To quote a country song (sorry I don't remember who wrote or performed it), " I'm too young to feel this damn old. " Amen to that.

Ramblin' RoseCo-owner/Moderator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: precisesewing@...Date: Mon, 16 May 2011 07:16:34 -0700

Subject: Re: Re: Eye question - retianl detachment or some-other

Hey Mike,

On the MRI it looks like a big brain tumor that ingulfed my optic chiasm and some brain matter. but all my blood work and spinal fluid was normal so they did a brain biopsy to determine what it was. The results showed lymphocytic infiltrate with granulomatous features. The work up for systemic sarcoidosis was negative and CSF showed no evidence of infection but did show lymphocytic pleocytosis. I am on Prednisone now and slowly decreasing since the last MRI at the end of april showed no sign of inflammation in the optic nerves and brain. The swollen optic nerves took most of my sight in my left eye. Just trying to get through the side effects of the pred. and the new way of looking at things with one eye.

good luck.

To: Neurosarcoidosis

Sent: Sun, May 15, 2011 9:07:54 PMSubject: Re: Eye question - retianl detachment or some-other

Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it.

For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike

>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried.

> I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont

>

May 18, 2011

I sew, sometimes (made my daughter's prom outfit), but am mainly an obsessed

knitter

xo

> It's interesting how many of us sew, I don't do so much anymore, but I made my

wedding dress too, and a lot of my clothes, my daughters baptismal gown, I love

to sew, it's really a stress release, but I haven't done it in awhile. I do a

lot of fixing, and alterations, hem all my husbands suits, etc.... I use to do

blankets, esp baby, and I'm sure I will again some day, I hope!!

> My husband even sews, but not clothes, he makes things he uses on his sail

boat, there called butt buckets.

>

> Marla

>

> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish Proverb

>

> A big AMEN to that one!

>

> Marla

>

> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish Proverb

>

> , I've noticed your email address is precise sewing. Do you sew

professionally, as a hobby, or what? I used to sew all kinds of stuff. Made

lots of my kids' clothes--Calvin Klein jeans, with the stitch pattern on the

pockets & all. I made heavy-duty winter coats for my son & husband, flannel

shirts with all the plaid matching at the seams & the pockets on the bias! Plus

pearlized snaps. I made hoodies, all kinds of tee shirts, blouses with ruffles

& pleats, then cross stitch or embroidery designs on them. Stuffed animals,

personalized Christmas ornaments. I look back & think, " How on earth did I do

all that? " I worked full-time, cooked regular meals (not cold cuts & chips;

oops.), sewed, gardened & canned (30 qts. of cherries one year!), helped coach

softball, plus practiced with all 3 kids. Now if I get my partials in & put on

something besides pj's, it's a productive day. To quote a country song (sorry I

don't remember who wrote or performed it), " I'm too young to feel this damn

old. " Amen to that.

>

> Ramblin' Rose

> Co-owner/Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

> To: Neurosarcoidosis

> From: precisesewing@...

> Date: Mon, 16 May 2011 07:16:34 -0700

> Subject: Re: Re: Eye question - retianl detachment or

some-other

>

> Hey Mike,

> On the MRI it looks like a big brain tumor that ingulfed my optic chiasm and

some brain matter. but all my blood work and spinal fluid was normal so they

did a brain biopsy to determine what it was. The results showed lymphocytic

infiltrate with granulomatous features. The work up for systemic sarcoidosis was

negative and CSF showed no evidence of infection but did show lymphocytic

pleocytosis. I am on Prednisone now and slowly decreasing since the last MRI at

the end of april showed no sign of inflammation in the optic nerves and brain.

The swollen optic nerves took most of my sight in my left eye. Just trying to

get through the side effects of the pred. and the new way of looking at things

with one eye.

> good luck.

>

> To: Neurosarcoidosis

> Sent: Sun, May 15, 2011 9:07:54 PM

> Subject: Re: Eye question - retianl detachment or

some-other

>

> Hello folks, (yes - its me - again )

> So - as of today (sunday) I have been to see my Optometrist, an

opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic

neuritis, and seems quite concerned that I get an MRI done on (whats keft of )

my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and

may be compressing on my optic nerve, or an occurence of an isolated OPticNerve

N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten

worse, but not much better. Neither mt family or myself have noticed any other

functional deficits associated with my original Dx of NeuroSarc, Just my

euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the

issue is the Pit-Adenoma being enlarged (encroaching compressing the optic

nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if

its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the

MRI and the neurologist to interpret it.

> For now, nothing to do but wait, (I'll just have another cup of tea)

> Hope everyone is managing

> regards

> Mike

>

> >

> > I don't post often, and I don't mean to seem like a 'whiner', but...

> > ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of

{rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl

Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then

in April 2007 Cataract surgery (left eye). both times my vision was 'saved' ,

restored to (almost) perfect. This past week I have had a psuedo-blind spot

appear in my central vision of my (guess where !!) left eye. I do have an

appointment with my eye Dr Thursday so he can have a look @ my left eye, and

hopefully refer me to an opthalmomlogist (as neccessary). From what I have read

online, some surgical intervention may be possible to save the vision in my left

eye, but...as much as I hate to say it....I'm worried.

> > I am wondering if anyone has any experience or ideas may be able to share ?

> > I do not like to ask, as I know some folks have\have had issues of their own

to deal with. Mant thanks in advance

> > Mike @ StCatharines, Ont

> >

>

May 19, 2011

All these recollections bring back a memory for me: at the end of our pre-grad year, my best friend made a jumpsuit (yes, that far back) as part her final home-ec project, but it was designed to show off her best assets in keeping with the times (think Abba/Mama Mia). It was a wonderful design, and all went well until the zipper which proved a challenge to find (about 30" if I recall). To pass in class, she put in a shorter zipper. But our big dance was the night she got her jumpsuit returned from the Home Ec teacher, and after hair, make-up etc which a bunch of us did at my house, we found Melinda still trying to get into the one-piece outfit even with the new zipper, which went up the back from below the waist to the neckline; Melinda was tall; about 5' 10" . . .

My Mom, who has always been a sewing whiz, was in on the project, too -- to no avail. . . so at the last minute, Mom hand-stiched my friend into her outfit and she looked as glamourous as she and we had all hoped.

Of course, this was all to impress a certain guy. . . and fortunately, it worked, but I had to carry scissors, needle and thread, and cut her out, then re-stitch her every time she made a trip to the washroom. She had a different outfit for our post-party pizza and get-together, so my responsibilties ended before the whole night was over. It was fun, and she and the guy are still a couple . . .married more than 30 y ears, and nearly 40 years after "the dance"

Her turn to help me came when I decided to make a couple of bathing suits (yes, to impress a guy) for our cottage vacation that summer. This was a cost-saving way to be "in style", except I chose the wrong fabrics . . .while the suits were quite flattering, and very up-to-the minute, the bikini two-piece fabric streched the moment it hit the water, so Melinda had to tie me back into the suit after I swam out to the raft the first time, then stick behind me later when I swam back to the dock. That became a tanning-only suit (before we knew better . . .) The other was worse: I used a "sharkskin" cotton (should have known from the name) to line a very sheer fabric -- to prevent see-through in the water -- only to find out it actually held water: the top and bottom both ballooned out with gallons of water I would have to manually dump from the top and bottom once I got out of the water. But it was the only water-usable suit I had that summer, so I had to go with it.

Don't sew much anymore; don't even mend well; hands are kind of useless. But I am thinking about knitting or trying to crochet as my first grandchild due in October, and it seems to be what grandmas do . . .

Cheers, and thanks for the memories.

To: neurosarcoidosis From: mamadogrose@...Date: Thu, 19 May 2011 00:42:07 -0400Subject: RE: Off topic

You are brave to make prom dresses! I made a long gown for my older daughter one year, trying to save money. Well, you know that time is money & I spent several weekends & nights working on that danged dress.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Wed, 18 May 2011 04:16:06 -0500Subject: Re: Off topic

I would rather build my own than fix someone else's. I love to sew and I think I am running out of people to give my creations to. lol But I will continue. Made granddaughters prom dresses this year. I get tired so easy that it takes longer. but I got it done.

I love to crochet too. I lose count a lot and end up either giving up or tearing it apart at least some of it. Oh well it keep me out of the bars. lol

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmoml ogist (as neccessary). From what I have read online, some surgical intervention may! be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 19, 2011

Prom gown that's impressive! Wish I could knit, my sister in law tried to teach me, but I just couldn't get it. Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

I sew, sometimes (made my daughter's prom outfit), but am mainly an obsessed knitter

xo

> It's interesting how many of us sew, I don't do so much anymore, but I made my wedding dress too, and a lot of my clothes, my daughters baptismal gown, I love to sew, it's really a stress release, but I haven't done it in awhile. I do a lot of fixing, and alterations, hem all my husbands suits, etc.... I use to do blankets, esp baby, and I'm sure I will again some day, I hope!!

> My husband even sews, but not clothes, he makes things he uses on his sail boat, there called butt buckets.

>

> Marla

>

> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

>

> A big AMEN to that one!

>

> Marla

>

> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

>

> , I've noticed your email address is precise sewing. Do you sew professionally, as a hobby, or what? I used to sew all kinds of stuff. Made lots of my kids' clothes--Calvin Klein jeans, with the stitch pattern on the pockets & all. I made heavy-duty winter coats for my son & husband, flannel shirts with all the plaid matching at the seams & the pockets on the bias! Plus pearlized snaps. I made hoodies, all kinds of tee shirts, blouses with ruffles & pleats, then cross stitch or embroidery designs on them. Stuffed animals, personalized Christmas ornaments. I look back & think, " How on earth did I do all that? " I worked full-time, cooked regular meals (not cold cuts & chips; oops.), sewed, gardened & canned (30 qts. of cherries one year!), helped coach softball, plus practiced with all 3 kids. Now if I get my partials in & put on something besides pj's, it's a productive day. To quote a country song (sorry I don't remember who wrote or performed it), " I'm too young to feel this damn old. " Amen to that.

>

> Ramblin' Rose

> Co-owner/Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

> To: Neurosarcoidosis

> From: precisesewing@...

> Date: Mon, 16 May 2011 07:16:34 -0700

> Subject: Re: Re: Eye question - retianl detachment or some-other

>

> Hey Mike,

> On the MRI it looks like a big brain tumor that ingulfed my optic chiasm and some brain matter. but all my blood work and spinal fluid was normal so they did a brain biopsy to determine what it was. The results showed lymphocytic infiltrate with granulomatous features. The work up for systemic sarcoidosis was negative and CSF showed no evidence of infection but did show lymphocytic pleocytosis. I am on Prednisone now and slowly decreasing since the last MRI at the end of april showed no sign of inflammation in the optic nerves and brain. The swollen optic nerves took most of my sight in my left eye. Just trying to get through the side effects of the pred. and the new way of looking at things with one eye.

> good luck.

>

> To: Neurosarcoidosis

> Sent: Sun, May 15, 2011 9:07:54 PM

> Subject: Re: Eye question - retianl detachment or some-other

>

> Hello folks, (yes - its me - again )

> So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it.

> For now, nothing to do but wait, (I'll just have another cup of tea)

> Hope everyone is managing

> regards

> Mike

>

> >

> > I don't post often, and I don't mean to seem like a 'whiner', but...

> > ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some surgical intervention may be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried.

> > I am wondering if anyone has any experience or ideas may be able to share ?

> > I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance

> > Mike @ StCatharines, Ont

> >

>

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May 19, 2011

OK since we're talking a walk down memory lane, I made a hot lime green bathing suit with plastic rings holding the front of the top together, and on each side of the bottom. I had a friend with a pool, and we would sit by the pool and read, (after chores of course). Well one day her cousin, a couple years older, (not hot) but funny. Was hanging with us for the day, and I took a dive off the board, and my ring broke, the cousin was hanging in the swallow end, he says he heard it and put his head in the water just in time to see everything, one I don't believe him, I was pretty fast in grabbing the suit and pulling it back together, and two, I was 14 there was nothing to see.

Last suit I made with plastic rings, lol Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

All these recollections bring back a memory for me: at the end of our pre-grad year, my best friend made a jumpsuit (yes, that far back) as part her final home-ec project, but it was designed to show off her best assets in keeping with the times (think Abba/Mama Mia). It was a wonderful design, and all went well until the zipper which proved a challenge to find (about 30 " if I recall). To pass in class, she put in a shorter zipper. But our big dance was the night she got her jumpsuit returned from the Home Ec teacher, and after hair, make-up etc which a bunch of us did at my house, we found Melinda still trying to get into the one-piece outfit even with the new zipper, which went up the back from below the waist to the neckline; Melinda was tall; about 5' 10 " . . .

My Mom, who has always been a sewing whiz, was in on the project, too -- to no avail. . . so at the last minute, Mom hand-stiched my friend into her outfit and she looked as glamourous as she and we had all hoped.

Of course, this was all to impress a certain guy. . . and fortunately, it worked, but I had to carry scissors, needle and thread, and cut her out, then re-stitch her every time she made a trip to the washroom. She had a different outfit for our post-party pizza and get-together, so my responsibilties ended before the whole night was over. It was fun, and she and the guy are still a couple . . .married more than 30 y ears, and nearly 40 years after " the dance "

Her turn to help me came when I decided to make a couple of bathing suits (yes, to impress a guy) for our cottage vacation that summer. This was a cost-saving way to be " in style " , except I chose the wrong fabrics . . .while the suits were quite flattering, and very up-to-the minute, the bikini two-piece fabric streched the moment it hit the water, so Melinda had to tie me back into the suit after I swam out to the raft the first time, then stick behind me later when I swam back to the dock. That became a tanning-only suit (before we knew better . . .) The other was worse: I used a " sharkskin " cotton (should have known from the name) to line a very sheer fabric -- to prevent see-through in the water -- only to find out it actually held water: the top and bottom both ballooned out with gallons of water I would have to manually dump from the top and bottom once I got out of the water. But it was the only water-usable suit I had that summer, so I had to go with it.

Don't sew much anymore; don't even mend well; hands are kind of useless. But I am thinking about knitting or trying to crochet as my first grandchild due in October, and it seems to be what grandmas do . . .

Cheers, and thanks for the memories.

To: neurosarcoidosis From: mamadogrose@...Date: Thu, 19 May 2011 00:42:07 -0400

Subject: RE: Off topic

You are brave to make prom dresses! I made a long gown for my older daughter one year, trying to save money. Well, you know that time is money & I spent several weekends & nights working on that danged dress.

Ramblin' RoseCo-owner/Moderator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Wed, 18 May 2011 04:16:06 -0500

Subject: Re: Off topic

I would rather build my own than fix someone else's. I love to sew and I think I am running out of people to give my creations to. lol But I will continue. Made granddaughters prom dresses this year. I get tired so easy that it takes longer. but I got it done.

I love to crochet too. I lose count a lot and end up either giving up or tearing it apart at least some of it. Oh well it keep me out of the bars. lol

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: Eye question - retianl detachment or some-other

Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it.

For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike

>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmoml ogist (as neccessary). From what I have read online, some surgical intervention may! be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried.

> I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance

> Mike @ StCatharines, Ont>

May 19, 2011

ï»¿

Has anyone ever made the "leisure suits" Argh those were terrible. lol

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: Eye question - retianl detachment or some-other Hello folks, (yes - its me - again )So - as of today (sunday) I have been to see my Optometrist, an opthalmologist, and a Neurologist. The Opthalmologist has indicated Optic neuritis, and seems quite concerned that I get an MRI done on (whats keft of ) my head. A (previously identified) Pituitary Micro-Adenome may have enlarged and may be compressing on my optic nerve, or an occurence of an isolated OPticNerve N-sarc - but the MRI will gave to show what it may be. My eyesight hasnt gotten worse, but not much better. Neither mt family or myself have noticed any other functional deficits associated with my original Dx of NeuroSarc, Just my euesight.,,so her e I sit waiting for an MRI Appointment to be made. If the issue is the Pit-Adenoma being enlarged (encroaching compressing the optic nerve), that would pose issues of its own (transfenoidal pit- resection ? ), if its Sarcoid @ my optic nerve - more steroids - I'll just have to wait for the MRI and the neurologist to interpret it. For now, nothing to do but wait, (I'll just have another cup of tea)Hope everyone is managing regardsMike>> I don't post often, and I don't mean to seem like a 'whiner', but...> ...having ben Dx'd w\ NeuroSarc Dec 1995 , I was treated w\ high doses of {rednisone, Dilantin (seizures), and Cyclosporine. August 1996 i had a Retianl Viterectomy on my left eye to remove scarring (caused by the SarcMonster), then in April 2007 Cataract surgery (left eye). both times my vision was 'saved' , restored to (almost) perfect. This past week I have had a psuedo-blind spot appear in my central vision of my (guess where !!) left eye. I do have an appointment with my eye Dr Thursday so he can have a look @ my left eye, and hopefully refer me to an opthalmomlogist (as neccessary). From what I have read online, some su! rgical intervention may! be possible to save the vision in my left eye, but...as much as I hate to say it....I'm worried. > I am wondering if anyone has any experience or ideas may be able to share ?> I do not like to ask, as I know some folks have\have had issues of their own to deal with. Mant thanks in advance > Mike @ StCatharines, Ont>

May 19, 2011

My girl isn't a 'gown' type, am attaching a pic of her " jazz " outfit So it

was a dress with white top/blouson sleeves/short skirt, with a fully lined

fitted vest over the top, and the collar/tie. Because she stood out from the

crowd of girls-in-gowns, she ended up with her photo in the local paper!

There's an excellent web site, http://knitty.com which has tons of free pattern

and articles on knitting, and http://knittinghelp.com which has free videos.

Knitting helps keep me sane, it's a great meditative activity.

xo

> Prom gown that's impressive! Wish I could knit, my sister in law tried to

teach me, but I just couldn't get it.

>

> Marla

>

> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish Proverb

>

> On Wed, May 18, 2011 at 11:30 PM, Sutherland

wrote:

> I sew, sometimes (made my daughter's prom outfit), but am mainly an obsessed

knitter

>

> xo

>

> > It's interesting how many of us sew, I don't do so much anymore, but I made

my wedding dress too, and a lot of my clothes, my daughters baptismal gown, I

love to sew, it's really a stress release, but I haven't done it in awhile. I

do a lot of fixing, and alterations, hem all my husbands suits, etc.... I use

to do blankets, esp baby, and I'm sure I will again some day, I hope!!

> > My husband even sews, but not clothes, he makes things he uses on his sail

boat, there called butt buckets.

> >

> > Marla

> >

> > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish Proverb

> >

> > A big AMEN to that one!

> >

> > Marla

> >

> > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish Proverb

> >

> > , I've noticed your email address is precise sewing. Do you sew