MSNik

Hey there. Im so glad to hear from you. Boy, what a great life we lead- both of sitting home on a Friday night typing away!! LOL.

How am I doing? Okay..mostly. I have some really awful days, the pain in my hand never stopped. I was diagnosed because I woke up one day thinking my hand was "asleep"..and it stayed that way for a week, after ruling out carpal tunnel and a pinched nerve, a CT scan was ordered, resulting in being referred to a Neurologist, followed by an MRI, a Spinal Tap, and the rest is history...fastest dx Ive ever heard of, but not one I would want to wish on anyone.
So, after several relapses and a few optical neuritis bouts, the only REAL complaint I have is constantly feeling like my hand is in hot oil. It burns, tingles and whoever called this numbness obviously had a sense of humor! I would say it is anything but numb....however, 85% of the time I deal with it, and when it gets real bad, I take an ambien and go to sleep! I am on Rebif, and that brings me to why I wanted to write back. I have been on it for about 8 months now. I had all of my relapses and optical neuritis the first 5 months I was on it. They say that CRABS take about 6 months to really start to work...so, dont be discouraged if you have had some setbacks...the real test is once you are on it a FULL 6 months at FULL strength, then how do you do...time will tell. Im doing really well overall, and in fact had an MRI about 6 weeks ago, which showed nothing Active and nothing new. Ill take that!

Im stil working too, but only 4 days a week, at least thats all im supposed to be working. But, Im in marketing/sales, so in reality Im doing a full 40 hours. The phone rings and I answer it, thats my nature...even on my day off. Besides, if I let an account sit just because I have a day off, it might not be there when I get around to returning that call...I feel compelled to do the best job I can while Im still able. Youre still working too you said. What do you do? And, do you see yourself being able to do it for the unforseeable future? I really dont know if Ill be able to keep up with this job. I have a huge territory and it really grew fast. (I must be good at it, huh?) So, I dont know, but Im giving it the best shot I can in hopes that this will keep both my mind and my spirit alive!

Sometime I feel like The Beast is eating away at me too. Im having some marital problems which are steming from my own frustration with this disease. My husband is overall pretty great, but he really does try to pretend it isnt happening, doesnt exist and therefore doesnt really want to think about or talk about the future...maybe thats a good way to be, I dont know..but for me, its really frustrating. How can I ignore something which is so real?? And, on days when I get home from work late, and still have to cook, clean, do laundry, you know- wifely stuff- how can he NOT expect me to hit the couch and immediately zonk out?? ITs not like I sat around eating bon-bons all day! And, you know what? I hope that day NEVER comes. We have only been married 3 years, and this came as quite a shock to both of us- so Id have to say overall, hes doing a great job of being supportive, but he just doesnt get it- Im scared too. I might sound strong, but I am still scared of the unknown. He refuses to talk about it.

Anyway, I think I am going to try to go to bed. Its really late here. Big hugs to you, and THANK YOU. Seriously, you writing that, really made me feel good. And, remember, Im always here. Just look me up. I try to get on every other day or so...nite.