Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 > Hi Aisha, > > I've been lurking for a while, its abit hard writing emails, it takes awhile for me to write.. I really appreciate everyone on the list, > it makes me realize that I am not alone in this. My most recent problem is that I need to undergo surgery on my thyroid, I have a Multinodal thyroid, > that is I have about 3 tumors on my thyroid that keeps growing and they can't operate right now because my lungs are very weak, and am only > using about 54% of it, because of the pulmonary sarcoidosis. They are also trying to bring down the prednisone. But the more they bring done the > prednisone the more the neurosarcoidosis acts up...like continuous headaches etc. They also don't know if they can take me off the pred. totally. > I feel like I am hanging in limbo. The only good thing so far as coming down off the pred. is that I've have lost about 14 llbs. > > Love > > Dusty > > Aisha Elderwyn wrote: > > > Hey Dusty!! > > > > I shall add your details!! How are things going hon? You've been real quiet > > of late! That nasty sarc playing up again - are you on the dreaded > > prednisone?? > > > > *HUG* > > > > " Music, reading, building doll houses, theatre, surfing, " > > > > Whoo hoo! Lots of us arty people here! Building Dolls houses.... now there > > must be a story behind that one. Do you sell them - how do you make them? I > > didn't know you were a music lover... tell me all!!!!!!!!!!! (my fav > > topic!!) > > > > Talk soon hon! > > Love A. > > > > ------------------------------------------------------------------------ > > Special Offer-Earn 300 Points from MyPoints.com for trying @Backup > > Get automatic protection and access to your important computer files. > > Install today: > > 1/2344/3/_/_/_/954904901/ > > ------------------------------------------------------------------------ > > > > View Members profiles, locations, hobbies and all that plus find out when their birthday are by visiting /files/ > > > > Visit The Members Lounge > > http://www.elderwyn.com/members > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 Hi Darling, *HUG* I am really sorry to hear that you are struggling so. " My most recent problem is that I need to undergo surgery on my thyroid, I have a Multinodal thyroid, that is I have about 3 tumors on my thyroid that keeps growing " Ohhhhh.... is that a result of hashimotos? " they can't operate right now because my lungs are very weak, and am only using about 54% of it, because of the pulmonary sarcoidosis. " Poor thing... " They are also trying to bring down the prednisone. But the more they bring done the prednisone the more the neurosarcoidosis acts up...like continuous headaches etc. They also don't know if they can take me off the pred. totally. " Have you tried imuran? I think you have to be weened off that too for an operation though " I feel like I am hanging in limbo. " I am sure you do. You sound like you are having a really rough time of it. Are you getting supported by family/friends or anyone?? I hope you are not having to go through this alone?? Well we are here for you always anyhow - you are never alone!! *HUGGLES* " The only good thing so far as coming down off the pred. is that I've have lost about 14 llbs. " *HURRAY* Now you can eat more chocolate.. and its ok to eat chocolate - said so - its theraputic Hang in there sweet one, and know that I am thinking of you. Do let us know when you have to go into hospital or when you next see your doctor etc. If you need to vent go for it! Love you sweet spirit! *hugs* Aisha. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2000 Report Share Posted August 31, 2000 Hi Aisha, Thank you for the lovely letter hon, how are YOU!! At the moment I am in a lot of joint pains especially my hand and fingers.... You just had an operation etc. ... are you recovering? The surgery went well, and am recovering. I now have to take thyroid meds for the rest of my life.. My doctor thinks that the Sarc may be starting to act up again (pulmonary), my last PFT's were not very good so she has order blood tests, a CT Scan another XRay, and another full Pulmonary function test (PFT). The headaches still continue, my memory and word finding are as bad as ever...and of course we can't forget the depression and panic attacks!!!!! Isn't life just wonderful!!!!!!! I am trying to hang in, and thank for your comforting words. Love Dusty Aisha Elderwyn wrote: Hello sugar, Thank you for the lovely letter hon, how are YOU!! You just had an operation etc ... are you recovering? Whats happeneing in Your world sweetie? Love you lots - gonna have the stuff on neurosarc up as soon as I get off my large chocolate enhanced butt and finish it! Hang in there sweetie! Love Aisha, your neurosuckydoisis buddy. ~~~~~~~~~~~~ “Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2000 Report Share Posted September 1, 2000 Hi Dusty, "At the moment I am in a lot of joint pains especially my hand and fingers.... " Ohhh me too. Do they swell up with fluid that goes hard? And then you cant really bend them well? "The surgery went well, and am recovering. I now have to take thyroid meds for the rest of my life.." I'm glad the surgery went well hon. Its just another pill!! ;-) "My doctor thinks that the Sarc may be starting to act up again (pulmonary), my last PFT's were not very good so she has order blood tests, a CT Scan another XRay, and another full Pulmonary function test (PFT). The headaches still continue, my memory and word finding are as bad as ever...and of course we can't forget the depression and panic attacks!!!!! Isn't life just wonderful!!!!!!! " *UGH* suckydoisis <--- thats what it should be called. Have they done a CRP, ESR and ACE? CT and X-ray - wow throrough! I hate doing PFT's they're exhausting. Panic attacks - are you on prednisone? My immunologist was telling me about one woman who had neurosarc and has fits every two years where she just goes totally psychotic. They give her IV prednisolone (I've had it *ugh*) and it helps her for the next two years. Just wondering if the prednisone helped? Memory? lol .... bad case of brain fog! damn disease. "I am trying to hang in, and thank for your comforting words." Keep hanging babe, we are right here for you always. *HUGS*Love Aisha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 I was asleep when you called. Email me sometimes. Quote Link to comment Share on other sites More sharing options...
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