I am so sorry for rambling on for so long...I find that when I write about this I tend to go on and on because I don't have anyone (except my poor husband)to vent to so the gates open and I have soooo very much to talk about...I guess it is such a relief to find ppl that share the same disease (that didn't sound right...but I hope you know what I mean)
Anyway, soon after my trip to KC, I was DX, and have been hospitalized about 5 times since, twice w/pneumonia. The last time I was hospitalized I was in a lot of back pain and found out I had a "broken back"........fr all the steroids I had developed osteoporosis and all the disks fr t-12 to l-4 were fractured ;( I am now in a back brace....
I was writing to introduce myself and give some history, but I did have a question too, if anyone cares to write if they too have the same symptoms. I just recently had a really bad "flare-up" and was in bed, could not get up except to go to the bathroom, ran a fever, and had the worst brain fog I've ever had. I honestly would think I needed to do something as simple as answer the phone, but I would drift back off into a deep sleep. I would wake up to a soaked pillow case and dripping wet hair...has anyone else ever had this. It's scary because I also have diabetes and I absolutely couldn't eat.... I had been in a coma about 3 yrs ago w/a blood sugar of 1400! All of this is just so very depressing at times I want to throw my hands up and say...forget it...but then here comes my dog and my angels...and I know I can't..... Thank you for listening and so very sorry I rambled on so much....
Never be sorry about venting thats what the group is for. Believe me u are not alone. I too are going through the brain fog and the sweating some times the sweating gets so bad I have to get out of bed and change my pillow case and my shirt. I not to long ago had a bad "flare" with the fever and the body hurting. My Dr in creased my steriods for the hudredth time, it helped me a whole lot but i just hate the fact of being on the medicine. I sometimes hate what us( lupus people) go though but like i always say, god will not put more on us than we can bare. I have an all some family support group too so that helps alot... I hope u have someone around u that is a very good support for u. I wish u the best...(big hugggggsss)
me too...and I am so glad lwl is here, even during the times I feel too sore to sit at computer
tanya said:
Never be sorry about venting thats what the group is for. Believe me u are not alone. I too are going through the brain fog and the sweating some times the sweating gets so bad I have to get out of bed and change my pillow case and my shirt. I not to long ago had a bad "flare" with the fever and the body hurting. My Dr in creased my steriods for the hudredth time, it helped me a whole lot but i just hate the fact of being on the medicine. I sometimes hate what us( lupus people) go though but like i always say, god will not put more on us than we can bare. I have an all some family support group too so that helps alot... I hope u have someone around u that is a very good support for u. I wish u the best...(big hugggggsss)
I'm 44 & was diagnosed in 2001. I too have been through the fog you describe and according to my dr I had a terrible infection that my body was trying to fight off but I don't believe it. I don't share the diabetes with you but I do share the osteoporosis. I was diagnosed 2 yrs ago after several breaks & a bone biopsy. Most happened by simply getting out of bed or off the couch! The meds they gave me (Forteo) costs $1000 per month & medicare would not approve so after a 3 month starter kit from the company I no longer take it even though my bone scan showed improvement. I also know the feeling of worthlessness (or it's to much to put my kids & husband through) but please hang in there, and feel free to contact me anytime!
Hi Bluesgirl. I am sorry you have this fog too. They did an EEG on me becuz I also have very poor memory recall. I have lesions on my brain but the doctor that did it wasn't concerned and said it could also be from the meds, but maybe fr the Lupus. Yup, I got the first fracture from bending slightly to get a pr of pants fr my dresser. I heard "pop" and felt it too...excruciating pain.....I know about the Forteo too! I called the pharmacy yesterday and they sd it would be 300 something, originally 1,000 something! Medicare did pay on it becuz of the fractures. My doc wrote an explanation with the auth. form becuz he knew they would try to deny it. I got a bone density, but he sd with the fractures that didn't matter, but still needed to be done. I think the guilt thing comes from not being able to do anything and help my husband out. He literally does everything and I cannot drive due to my back. The guilt turns to shame and the depression sets in..... My back has been like this for about 5 yrs(the lumbar) and the Nuerosurgeon wanted to do surgery, but my Rheumy won't auth. it becuz the Lupus has attacked my lungs..... It just seems that every time I go into the hosp they find something else! Again, sorry this so long-winded...lol You too can contact me anytime if you nd to talk... I esp feel so bad for those of you that still have children at home...that has got to be so so difficult.... My daughter and her 3 children live with us, but I can still rest when needed becuz the oldest is 13 and she can keep an eye on the others. Whew....
Bluesgirl32 said:
Hi Angel,
I'm 44 & was diagnosed in 2001. I too have been through the fog you describe and according to my dr I had a terrible infection that my body was trying to fight off but I don't believe it. I don't share the diabetes with you but I do share the osteoporosis. I was diagnosed 2 yrs ago after several breaks & a bone biopsy. Most happened by simply getting out of bed or off the couch! The meds they gave me (Forteo) costs $1000 per month & medicare would not approve so after a 3 month starter kit from the company I no longer take it even though my bone scan showed improvement. I also know the feeling of worthlessness (or it's to much to put my kids & husband through) but please hang in there, and feel free to contact me anytime!