WOW! I haven`t been on this forum for a few months and all kinds of doo-doo has hit the fan.
After spending a couple of hours reading it has become apparent that this little closed society had completely abandoned the right to speak freely, won`t allow its members to choose what they want to read or believe, and will send you for a `time out` if you don’t say what they like. When rights are denied society fails. So sad. Guess if you are going to play in their house you play by their rules.
Too bad, it made for some interesting reading, might have even helped some people or made them aware of some other point of view.
It looks like the sandbox is going to be cleared out and nobody is going to be able to play.
I read what I wrote earlier today and I sound really down and out. Maybe I am…but not as bad as I sound.
Norb, I go back to the neuro next week and we’re suppose to talk about weening. He said we’ll have to look at the “big picture and decide”. My big picture is no change, other than side effects, and maybe even some worsening. If anything has gotten worse….it is yet very subtle. I do notice alot more balance problems. But shoes make an important difference. New Balance is what I wear mostly but I do like to wear my flip flops…I need to stop tho…to save myself the embarassment. Maybe if I had a cane….b/c when I push a grocery cart, I feel safe. But, I’m not bad enough for a cane.
The highs and lows of the steroids are something. One day I am flying, I can be angry or sad within a minute. I could cry b/c the sun is shining. It’s like post partum depression almost. I shake. I hate the shakes. Even when I am not shaking on the outside, I am shaking on the inside. Noise bothers me. I am not myself. I want to be off the steroids.
I’m scared that nothing is working for me. When we started the steroids (b/c IVIG wasnt working), he said it was possible things have halted and that the disease is done. My symptoms would be residuals. Or, it’s progressing.
I feel like it’s the latter. While it’s all very very subtle…I notice. And, then, maybe, I think…what if I am just feeling worse b/c I am so worn out and tired ? An estate sale, two garage sales, hubby in another car accident, full time job, working to get mother in laws house ready on occcasion, mother, etc….I am a wee bit spent. Can the fatigue make it as if things are getting worse ? When do I go somewhere else and what more should be done ? What about another test ? What about an MRI on my brain ?
Oh, if it would just go away !
My sister asked me if I am taking the prednisone like i’m supposed to b/c I dont have the moon face. My face has gotten fuller. I can see it. Maybe she cant. Why do they ask such things. Why do they pretend to care sometimes and other times when I try to explain, they brush me off ? Do they WANT me to have the moon face ?
ok, here I go again….a mood swing…:)
One more week…I’m going to start getting off this stuff. How many mg’s do they ween at one time ?
I’ve been away too long without venting. I see there are many new-comers…welcome…and good health, you have found a new family.
peace to all.