Can I ask how they do nerve tests? It doesnt hurt does it?
Hi Corella- I just wanted to say hello. I feel like I was right where you were a few months ago regarding waiting for diagnosis and sort of distancing myself from it. Honestly, I thought I was losing my mind or was just simply lazy at times. Many of your symtoms are also mine from fatigue to mouth ulcers, mental fog, emotional stuff. (See brain fog, I can't even remember the whole list that I feel too, lol) I just wanted to say that since being diagnosed a lot of things in my life have improved. I don't know if it is partly just knowing I am not crazy, trying to appreciate my husband more and his understanding that I can't help this, etc the medication of all of the above but in many ways, I do feel better since knowing for sure. Physically, things are starting to improve with my medication so I am currently feeling fairly optomistic. Yes, it can be scary, absolutely, and I am aware that there are worse days ahead of me but for now, I am glad I was diagnosed. It is so much better than not knowing. I hope that makes sense and doesn't sound too Pollyanna-ish. (Sunny side of life-ish)
If it is SLE then I am going to be quite limited with medication, I cannot take steroids and chemo is out for the time being - I already have history of cancer in my family and I have been advised it can increase your risk of getting cancer.
I like going to the gym and went on Saturday and exhausted myself, so will go again when I feel stronger. The weather in Perth is too bad to cycle at the moment so I will get to the gym as and when I feel OK and I am learning to rest up and not push myself.
Its funny how when you get dry eyes, then some days they stream, when there are cooking smells or if there is a bushfire near by, my eyes sting like hell. My vision is a bit blurry today, I have started to wear my glasses for computer work so my eyes dont have to work so hard.
As for the dry mouth, I will confess to enjoying a mug of hot Milo with a measure of whiskey in it - I may have some right now.
Well i've got SLE mate, been on plaquenil and it does'nt suite me so i'm coming off it slowly steriods don't like me either.lol and like yourself a good history of cancer and strokes on my dads side, well i've had the strokes and my moms side is diabetes, fluid on the lungs and heart attacks but the doctor's keep checking me on most of the stuff because of my family history.
Just be careful pushing your body to hard, i've done it just around the home and my god i have suffered for it after.
Well how you wear glasses, i do for reading and walking out but i need new lenses, it's a good job my eyes are tested once a year which your surposed to with Lupus. I used to love my bit of whisky and lemonade but that's left my life through burning my system out, so just call me the tea hern.lol
My mouth and now my throat have been drier than my dogs biscuit today, and I have been weak on and off all day. I wonder if it is lupus or what else it could be, my thyroid us fine so doctor said. But whatever it is, I'm getting a variety of unpleasantness and if my mum were alive it would call for one of those 'mum hugs'
Oh Corella, stretch out your arms to the other side of the river, I'll give you a big mum hug
Diagnosed with Lupus - 22 June, 2010
Sjogrens Disease what i have cause those symptoms dry mouth and gullet, it drys your saliva up. I'm at the cup of tea's every 10mins mate and have to watch what i eat as it hurts swallowing certain foods.
I hope you less pain free today. xxx
Well today was a bit of a shock, I went for my Brazilian waxing appointment and the beauty therapist was doing her job and discovered that each time she used the hot wax I started bruising blue/dark red immediately. She said to me 'I hope you dont mind me telling you this, but I think you need to see your doctor because what I am doing should not cause this' - she then went on to tell me that she wouldnt be happy to wax me again until I have been seen. I then explained the health problem to her and she told me that she had an auto immune disease 7 years ago and they had to remove her spleen, that is why she recognised the quick bruising with hot wax.
Anyway, it was vigilant of her but no way can I imagine not having my wax (SO fed up with that one)
I wish there was something I could do with the pasty skin and bags under my eyes. I am going to talk to my GP on Monday to see if there are better painkillers and stuff I can take to stop my mouth/eyes being so dry.