Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 I've probably had it for at least 5 years (I had a 6th nerve palsy of 'unknown cause' then) and probably longer (10 or so - but misdiagnosed as fibromyalgia) .... but have only had a clearer diagnosis since about October last year. And it's only since then that I've had all the medication and side effects and bigger impacts ... I think I'll ask my GP about getting a referral to a psych when I see him next week (then it will be covered by government health care, so won't be too expensive). Thanks for your thoughts xo > > , > > How long have you had Sarc? I have had it fifteen years, and I HAD to go to a counselor for many years before I felt I could accept everything that goes along with this disease (the pain, the isolation, and, of course, my body image). I say going to a counselor can't hurt, so you might as well try it. > > > > > To: Neurosarcoidosis > Sent: Thu, March 24, 2011 6:31:23 PM > Subject: Re: Re: Hair > > Here's to feeling sassy!! Unfortunately my hair was thin and fine to start with, so this extra 'hit' from the meds isn't helping matters ... my hairdresser recommended some 'leave in' conditioners, which I'm starting using today. Plus I got some fancy pants colouring conditioner (Revlon Professional Nutri Colour Creme) - if nothing else, it's a nice treat, LOL. > > And I've been agreeing with every recent comment about weight gain UGH. I've put on about 12 kg (roughly 26 lb) since Oct last year, and I *wasn't* slender to start with. I feel so horrible, I hate the way my face and neck look now, especially. I just don't seem to be able to get over the mental hurdle involved .... yes, I'm thrilled that the Pred gave me back my vision (well, almost all of it), but I just can't handle the side effects, and how I look now. > > I've struggled to be happy with my body / appearance since I was a kid, got a fair bit of criticism from my parents about my weight, snide comments etc, and I've always been a curvy girl. > But now I wish I could get back to my 'curvy' size, and I'd be happy with that - I guess it's all relative isn't it! I keep telling myself that my friends and family don't care what I look like, and it's my personality that counts, but my emotional reaction to the way I look is still stronger ... I'm starting to think I should see a counsellor or something :/ Really quite depressed by it all. > > I eat a pretty good diet, homecooked meals most nights, plenty of fruit and veg, fairly low fat, etc etc. And my husband and I have started going for a swim once a week - I can't walk for exercise any more because my feet hurt too much. > > xo > > > > > > > > > > , > > > > I have very thick hair and it did dry out and break off. When I did iv > > cytoxan it really broke off. It was very long and I went to the hair > > dresser and had it cut off into a pixie. I decided I wanted to be sassy > > instead of watching it break off. I recently decided to do it again - > > not because of meds but because I needed a lift and wanted to feel sassy > > again! > > > > HTH - Terri G. > > > > > > > > > > Has anyone else got really dry hair when on immune suppressants? My > > hair is just horrible at the moment, and thinning ... I hope I don't go > > bald!! Eeeeeek! (I've been on Methotrexate, and have now swapped over to > > Imuran). > > > > > > xo > > > > > > > > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 , I have only been diagnosed for a year. But I am now going to start going to a therapist in a couple of weeks. I have been very depressed and not accepting the body and life changes. You are not alone in the depression thing. Hang in there. To: Neurosarcoidosis Sent: Thu, March 24, 2011 8:25:35 PMSubject: Re: Re: Hair , How long have you had Sarc? I have had it fifteen years, and I HAD to go to a counselor for many years before I felt I could accept everything that goes along with this disease (the pain, the isolation, and, of course, my body image). I say going to a counselor can't hurt, so you might as well try it. To: Neurosarcoidosis Sent: Thu, March 24, 2011 6:31:23 PMSubject: Re: Re: HairHere's to feeling sassy!! Unfortunately my hair was thin and fine to start with, so this extra 'hit' from the meds isn't helping matters ... my hairdresser recommended some 'leave in' conditioners, which I'm starting using today. Plus I got some fancy pants colouring conditioner (Revlon Professional Nutri Colour Creme) - if nothing else, it's a nice treat, LOL.And I've been agreeing with every recent comment about weight gain UGH. I've put on about 12 kg (roughly 26 lb) since Oct last year, and I *wasn't* slender to start with. I feel so horrible, I hate the way my face and neck look now, especially. I just don't seem to be able to get over the mental hurdle involved ... yes, I'm thrilled that the Pred gave me back my vision (well, almost all of it), but I just can't handle the side effects, and how I look now. I've struggled to be happy with my body / appearance since I was a kid, got a fair bit of criticism from my parents about my weight, snide comments etc, and I've always been a curvy girl.But now I wish I could get back to my 'curvy' size, and I'd be happy with that - I guess it's all relative isn't it! I keep telling myself that my friends and family don't care what I look like, and it's my personality that counts, but my emotional reaction to the way I look is still stronger ... I'm starting to think I should see a counsellor or something :/ Really quite depressed by it all.I eat a pretty good diet, homecooked meals most nights, plenty of fruit and veg, fairly low fat, etc etc. And my husband and I have started going for a swim once a week - I can't walk for exercise any more because my feet hurt too much.xo > > ,> > I have very thick hair and it did dry out and break off. When I did iv> cytoxan it really broke off. It was very long and I went to the hair> dresser and had it cut off into a pixie. I decided I wanted to be sassy> instead of watching it break off. I recently decided to do it again -> not because of meds but because I needed a lift and wanted to feel sassy> again!> > HTH - Terri G.> > > >> > Has anyone else got really dry hair when on immune suppressants? My> hair is just horrible at the moment, and thinning ... I hope I don't go> bald!! Eeeeeek! (I've been on Methotrexate, and have now swapped over to> Imuran).> >> > xo > >> > ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 I'm sorry I've been out of the picture, Therapy is good, when I was first dx I went, and again when dx with NS, and thinking about it again. As I have really been struggling with depression, I think it's because I decided not to pursue my Dream of being a Kay Director, I've tried and tried and it's just too hard, too much time, and the pace doesn't ever slow down, just can't do it. So I stopped going to meetings, which were pretty lifting, but just see no reason when I'm doing what the meeting is all about. don't know if that makes sense. I still have my wonderful customers, and will service them as long as they allow me too. My Mom is at her sister's right now too, and I miss her, it's nice having her around during the day. Thank you for the birthday greetings, I got a ton on Facebook too. Anyway, I think Therapy is a good idea, like I said I'm thinking of going back too. 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 have only been diagnosed for a year. But I am now going to start going to a therapist in a couple of weeks. I have been very depressed and not accepting the body and life changes. You are not alone in the depression thing. Hang in there. To: Neurosarcoidosis Sent: Thu, March 24, 2011 8:25:35 PMSubject: Re: Re: Hair , How long have you had Sarc? I have had it fifteen years, and I HAD to go to a counselor for many years before I felt I could accept everything that goes along with this disease (the pain, the isolation, and, of course, my body image). I say going to a counselor can't hurt, so you might as well try it. To: Neurosarcoidosis Sent: Thu, March 24, 2011 6:31:23 PMSubject: Re: Re: HairHere's to feeling sassy!! Unfortunately my hair was thin and fine to start with, so this extra 'hit' from the meds isn't helping matters ... my hairdresser recommended some 'leave in' conditioners, which I'm starting using today. Plus I got some fancy pants colouring conditioner (Revlon Professional Nutri Colour Creme) - if nothing else, it's a nice treat, LOL. And I've been agreeing with every recent comment about weight gain UGH. I've put on about 12 kg (roughly 26 lb) since Oct last year, and I *wasn't* slender to start with. I feel so horrible, I hate the way my face and neck look now, especially. I just don't seem to be able to get over the mental hurdle involved ... yes, I'm thrilled that the Pred gave me back my vision (well, almost all of it), but I just can't handle the side effects, and how I look now. I've struggled to be happy with my body / appearance since I was a kid, got a fair bit of criticism from my parents about my weight, snide comments etc, and I've always been a curvy girl.But now I wish I could get back to my 'curvy' size, and I'd be happy with that - I guess it's all relative isn't it! I keep telling myself that my friends and family don't care what I look like, and it's my personality that counts, but my emotional reaction to the way I look is still stronger ... I'm starting to think I should see a counsellor or something :/ Really quite depressed by it all. I eat a pretty good diet, homecooked meals most nights, plenty of fruit and veg, fairly low fat, etc etc. And my husband and I have started going for a swim once a week - I can't walk for exercise any more because my feet hurt too much.xo > > ,> > I have very thick hair and it did dry out and break off. When I did iv> cytoxan it really broke off. It was very long and I went to the hair> dresser and had it cut off into a pixie. I decided I wanted to be sassy > instead of watching it break off. I recently decided to do it again -> not because of meds but because I needed a lift and wanted to feel sassy> again!> > HTH - Terri G.> > > >> > Has anyone else got really dry hair when on immune suppressants? My> hair is just horrible at the moment, and thinning ... I hope I don't go> bald!! Eeeeeek! (I've been on Methotrexate, and have now swapped over to > Imuran).> >> > xo > >> > ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:- Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2011 Report Share Posted April 1, 2011 La, depression can be a part of the actual disease process, as well as from dealing with all the losses, fears, frustrations, etc. that we experience. Not everybody needs antidepressants, but if you find you are not coping well, you might consider it. Some of these meds also help relieve pain, and one of them, Cymbalta, specifically targets neuropathic pain. Re: depression, keep SAD (Seasonal Affective Disorder) in mind. These folks suffer depression related to the decrease in light during the winter months. So it's important to think carefully about any patterns in the depression. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: ladyt19119@...Date: Thu, 24 Mar 2011 20:36:26 -0700Subject: Re: Re: Hair , I have only been diagnosed for a year. But I am now going to start going to a therapist in a couple of weeks. I have been very depressed and not accepting the body and life changes. You are not alone in the depression thing. Hang in there. To: Neurosarcoidosis Sent: Thu, March 24, 2011 8:25:35 PMSubject: Re: Re: Hair , How long have you had Sarc? I have had it fifteen years, and I HAD to go to a counselor for many years before I felt I could accept everything that goes along with this disease (the pain, the isolation, and, of course, my body image). I say going to a counselor can't hurt, so you might as well try it. To: Neurosarcoidosis Sent: Thu, March 24, 2011 6:31:23 PMSubject: Re: Re: HairHere's to feeling sassy!! Unfortunately my hair was thin and fine to start with, so this extra 'hit' from the meds isn't helping matters ... my hairdresser recommended some 'leave in' conditioners, which I'm starting using today. Plus I got some fancy pants colouring conditioner (Revlon Professional Nutri Colour Creme) - if nothing else, it's a nice treat, LOL.And I've been agreeing with every recent comment about weight gain UGH. I've put on about 12 kg (roughly 26 lb) since Oct last year, and I *wasn't* slender to start with. I feel so horrible, I hate the way my face and neck look now, especially. I just don't seem to be able to get over the mental hurdle involved ... yes, I'm thrilled that the Pred gave me back my vision (well, almost all of it), but I just can't handle the side effects, and how I look now. I've struggled to be happy with my body / appearance since I was a kid, got a fair bit of criticism from my parents about my weight, snide comments etc, and I've always been a curvy girl.But now I wish I could get back to my 'curvy' size, and I'd be happy with that - I guess it's all relative isn't it! I keep telling myself that my friends and family don't care what I look like, and it's my personality that counts, but my emotional reaction to the way I look is still stronger ... I'm starting to think I should see a counsellor or something :/ Really quite depressed by it all.I eat a pretty good diet, homecooked meals most nights, plenty of fruit and veg, fairly low fat, etc etc. And my husband and I have started going for a swim once a week - I can't walk for exercise any more because my feet hurt too much.xo > > ,> > I have very thick hair and it did dry out and break off. When I did iv> cytoxan it really broke off. It was very long and I went to the hair> dresser and had it cut off into a pixie. I decided I wanted to be sassy> instead of watching it break off. I recently decided to do it again -> not because of meds but because I needed a lift and wanted to feel sassy> again!> > HTH - Terri G.> > > >> > Has anyone else got really dry hair when on immune suppressants? My> hair is just horrible at the moment, and thinning ... I hope I don't go> bald!! Eeeeeek! (I've been on Methotrexate, and have now swapped over to> Imuran).> >> > xo > >> > ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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