Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 <He also tells me that I have had it from birth and have been fine up until now and he doesn't think that I will ever have problems from this any worse than I have now.> Amber, My nsg believes I've had my ACM since birth too. I have never been involved in any traumatic accidents so I agree that it's since birth. My birth was somewhat difficult & I think that was what actually caused the ACM, as I don't have any family history to indicate a hereditary condition. I'm 29 & have never had problems until the last couple of years. My nsg said that my age group is when people commonly present with head & neck problems of all kinds. It doesn't matter if you've never had problems before. If you have problems NOW, that's what matters. I hope you're able to find a better doctor soon! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Ehhhhhh. I don't know, nothing changes. My blood work is ok, I saw the rheumy yesterday, he doesn't seem to think I have an excuse to feel this way. Was asking me about winter blues. I told him yes, I get them but this is not it. I never get depressed and this has been dragging me down. It's not depression causing fatigue either, it's the other way around. I'm tired and therefore get depressed because I don't seem to be getting anywhere and I don't have the strenght to carry on. My kidneys are also fine. He doesn't think it's lupus fatigue because I'm not flaring. Can't I have the symptoms without flaring? I don't know. It's just not like me. I never get depressed. Yes, I get a little down and worn out, but not like this. This fatigue is getting to me. Mojo Mojo How are you feeling today? Doing any better? "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Oh ........ I hope you don't mind me butting in.......while I was reading your post i was thinking "she reminds me of me in the beginning"!!! Your e-mail screams control freak! Your not "doomy and gloomy"! However you are right, your have got to give that control up and hand it over to a higher power! I am a control freak.......and when I first got sick I went nuts, because I had rely on others to help me. If it wasn't for my friends here I would have gone absolutly bannanas!!!!!!!! I had to get to a point where I just quit fighting. Once I gave in my stress was less. But it was NOT easy! I stressed myself out just fighting not giving in! I'm not saying roll over and play dead.....but if those dishes don't get done, so what! If the laundry is piling up.....I save it for a "good" day. Trust me, your not alone.......and it will get better. Love, Becky Marie s wrote: Pam, Welcome to the group and thanks for responding to my post. I feel a little shamed stating that I'm not able to cope with things while everyone else seems to be doing fine. I don't mean to sound so doomy and gloomy, but that's how I feel at times. I'm not going to give up because living is the best game in town. It just makes it hard making it from one day to the next. I guess what is making it so hard is that I'm trying to do it all on my own. I have a great family that is very supportive of me, but no one truly understands unless they are going through it themselves. I have Jehovah more than anything ... I guess I'd better leave it in his hands and stop trying to do it all myself. I'm getting help, but when you're in pain and suffering you just want it to end. I've become impatient. I've always been that way. I have a lot of people helping me and that frustrates me more because things are out of my control and I have to depend on them to get things done. * Sigh * I won't give up. This is just hard, is all. Thanks again for being supportive. It is much appreciated. -. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 I have to disagree with you. I really don't think you will find many people here aggravated by your complaining. We actually don't even treat it as complaining. We see is as sharing your pain with us, and that is a good thing. It is easier to live if we have someone to share our problems with and we wouldn't be much of a support group if all we did was laugh. So, looking forward to hearing from you again, even if you have to complain some more. Mojo Re: I'm so depressed ... to > >Date: Mon, 12 Apr 2004 22:49:08 -0400 > > > > , please vent whenever you feel you need to. We are here and we do > >listen. > > > > Yes, you will live with this illness for as long as you will live, > >unless they find a cure. That is a possibility, hopefully that day will > >come soon for all of us. Then there is another possibility: maybe you won't > >always suffer this much, maybe you are just going through a very rough > >period. Maybe the better days are just ahead where you will go into > >remission. It is possible, believe me. I have been diagnosed 17 years ago, > >but I was in remission for a good 8 years during which time I was > >monitored, took some medication to treat the symptoms of the damage that my > >kidneys sustained when I first got sick, and I was pain free. During these > >8 years I was able to make my dream come true and have three wonderful > >children. I didn't get my BIG flare until my youngest was two years old. > >Now, I'm still hoping another long period of remission is somewhere ahead > >of me. Yes, my kidneys did get further permanent damage, yes there is more > >involvement now than the kidneys, but I'm sure sunny days are just ahead. > > > > It's the pits that you are going through all this right now. Weight gain > >is one of those things that really get me down and how can you loose it > >when your body doesn't let you exercise, when you are so depressed you just > >want to eat some more and even if you don't prednisone will make you gain > >some more. You just do your best, that's the most you can do. Getting > >disability denied is very depressing, but do not get discouraged. File > >again, take a lawyer if you don't have one already. Don't let the system > >beat you, you try and get from the system what you deserve. If you don't > >get it on your second try, make sure you claim again and go before a judge. > > > > Don't tell yourself that everything is ok when it isn't. Vent, talk to > >us or someone who will hear you out. Then do not loose hope for the better > >days. They will come and the sun will shine for you. > > > > Mojo > > _________________________________________________________________ > Is your PC infected? Get a FREE online computer virus scan from McAfee® > Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 > > > > > " The LUPIES Store " Come check out our store... > http://www.cafepress.com/thelupies > > " The LUPIES Web Page " > http://www.itzarion.com/lupusgroup.html > > " The LUPIES online photo albums! " > Check out what your fellow Lupies look like... > http://www.picturetrail.com/gallery/view?username=lupies > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 I'm sorry you can't find a doctor to help you. It seems like a common complaint. Try and hang in there. Hugs, /Mi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2008 Report Share Posted November 5, 2008 You're welcome! R. (52) Sarcoid/PF 3/2006 Carlsbad, California Subject: To To: Breathe-Support Date: Wednesday, November 5, 2008, 12:44 PM Thank you so much for the wonderful card! It was unexpected and the magnet has a central place on my fridge. So thoughtful. Hugs to you. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
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