Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Hi Alison, my name is and I'm one of the moderators on the list and also suffer from this dreaded disease we like to call the sarc monster... I'm sorry to hear about your eye sight there was another person on here just yesterday that was having visual trouble, I believe her name is Madonna you may be of some help to her as she is scared, and rightly so...You know we all have our stories of how the disease hit us and some of them are similar and some are not, but please feel free to share you story with the group....We love to get to know new people... As for diarrhea, my stomach has been crampy for months now, even with a drink of water... sometimes I have diarrhea without cause, I plan to talk to my doc about next week when I go.. It's getting pretty bad.. and sarc can and will attack the gastric tract from top to bottom..So, if this is something that is bothering you significantly you may want to mention it to your physician.. and make sure what is going on.... Anyway, Glad your with us.... but sorry your sick... Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 honest I am feeling a little down about it to.. Feeling down about being chronically ill with a condition no one understands- either how we got it, or how to get us well-- is so perfectly normal. It may be the only thing in our life that is normal, but it's normal. Most of us are on some form of anti-depressant for depression (secondary to being chronically ill) and it is also prescribed as part of the pain management. Don't be afraid to talk to your MD's if you feel yourself getting to overwhelmed with the changes that are happening to your body. Know also, that you are not alone. There are 200+ people on this list-- 30 or more post very regularly. We will be here when you need us. I saw my optician yesterday morning and I have now only got 50% sight in my right eye. The optic nerve is VERY inflammed...The membrane covering both corneas are dry and damaged too, so now I have drops to use daily and an ointment to put in at night! I am so sorry that your vision is effected. I know that the thought of losing my eyesight is scarier to me than the thought of being wheelchair bound. I hope that your ophthalmologist is having you use Predforte drops 4 or more times a day? Also, when the cornea is dry-- it majorally effects your vision. You will probably see some slight clarity of vision by using artificial tears often. The cornea requires alot of moisture to be able to focus. Don't worry about using the tears too often-- they will not hurt your eyes at all. When you put the medication drops in--PredForte, wait 5 minutes before using the artificial tears. Aisha mentioned havig them give you IV solumedrol to get that optic nerve inflammation down. That is a very good idea. Not only will it help with the optic nerve, but also with any other part of the body that has inflammation. Also, it is so important that you see an Ophthalmologist(MD) instead of an optician or optometrist (OD). When a disease hits the eyes, and since sarcoid is considered a rarity-- it is very important that you have someone that has medical experience more than someone who primarily prescribes glasses. An OD can generally treat minor glaucoma but when it comes to this-- MD all the way. BTW, it was my ophthalmologist that originally diagnosed my sarcoidosis. I had bilateral iritis-- inflammation of the iris in both eyes-- that got me started on this path. He was also my boss. I had the pleasure of working for him for almost 7 years. He is still the one I go to with many of my questions. As for the diarrhea problem, sometimes it is horrendous, others not a bother. It seems to be stress induced-- I do know that is a correlation. Also know that there are no stupid or embarrassing questions-- well, maybe embarrassing, but we are all in this together. Most of our 2000 parts are fairly similar. After years of trying to find ways to deal with the SM (sarc monster) we are so used to talking body parts and functions (or dysfunctions) that it's no big deal. Hugs to you, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 that is what we are here for. Trying to answer questions, get answers to our questions and even VENT. By venting I mean getting down and using caps, cuss words screaming and yelling. Getting mad. This disease is noted for making us angry, frustrated and down right mad and family members and friends don't seem to understand us. Sharon Hello from the UK Hello there...I just wanted to say I don't know most of you here, but I have joined up for the Christmas card thingy...I am really looking forward to getting to know you all.I am having terrible trouble with this sarcoid at present, and if I am honest I am feeling a little down about it to..I saw my optician yesterday morning and I have now only got 50% sight in my right eye. The optic nerve is VERY inflammed...The membrane covering both corneas are dry and damaged too, so now I have drops to use daily and an ointment to put in at night!Could I jsut ask.....Does anyone get unexplained diaorria? (sp)...I don't feel ill, as far as I know I haven't eaten anything off, but last night and tonight has been....AWFUL!! Sorry about the question!!Love Alison~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Don't worry about the question Alison, we have stranger ones then that asked. And YES, I get it all the time, sometimes day after day, or a build up, then " explode " . I had it before some of the meds I'm on, but even worse now. The only thing I have found for the " discomfort " is an apple cinammon tea. Good luck, and hope your feeling better soon. Love and Prayers, Marla from Colorado. Hello from the UK > Hello there... > > I just wanted to say I don't know most of you here, but I have > joined up for the Christmas card thingy... > > I am really looking forward to getting to know you all. > > I am having terrible trouble with this sarcoid at present, and if I > am honest I am feeling a little down about it to.. > > I saw my optician yesterday morning and I have now only got 50% > sight in my right eye. The optic nerve is VERY inflammed...The > membrane covering both corneas are dry and damaged too, so now I > have drops to use daily and an ointment to put in at night! > > Could I jsut ask..... > > Does anyone get unexplained diaorria? (sp)... > I don't feel ill, as far as I know I haven't eaten anything off, but > last night and tonight has been....AWFUL!! > > Sorry about the question!! > > Love Alison > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 Hang in there - thanks for waving! We're Loving you and sending you healing energy! Hope you have the energy to come out of your lurk soon! Love, Jeri Quote Link to comment Share on other sites More sharing options...
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