Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Of course we will all pray for you but I'll wish you the best of good luck too Hope it helps e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 you will be fine, most of the women on here went thru this and came out as Superstars!! Good luck on Wednesday and God bless, you will be in my thoughts sbstraus@... wrote: Think of me on Wed. morning between 7:30-9:30 Texas time. I'm nervous, but hoping for the best. Thanks for all your support and I will post as soon as I can walk up the stairs. Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 Good luck and don't worry! A few tips: Everyone recovers at a different pace. Take it easy and take your time. Don't be too quick to eat until you're told it's OK and play safe to avoid nausea. Wriggle your toes and move your legs every once in a while to help circulation. Before going to bed have your water in a glass within easy reach to save getting out of bed. Headphones or earplug are useful for blocking out any noise disturbing your sleep If you are one of the unlucky ones who gets nausea, ask for the nurses'advice about what aggravates and what eases it. Ask if the morphine pump may aggravate nausea. Resting the 'stomach' muscles helps avoid pain. Still, pain relief is a good idea before trying to get out of bed for the first time. Some women have bled after their operation and/or getting out of bed for the first time. One idea is to take in different size sanitary towels, although the hospital will have them too. Getting back into bed didn't hurt me as I took it slowly, sitting further down the bed and easing each leg in to bed one at a time, then lowering myself using arms as levers. It'll soon all be over and a load of worry will be off your mind! You'll sleep through the whole thing. Good reading material would be light and easy (not too funny as laughing hurts). Take in a notebook and pencil/pen too and tissues. Aztek Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2006 Report Share Posted May 17, 2006 Lots of luck and good thoughts coming your way. G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 , Prayers and good luck! Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Hi all and thanks for the prayer, best wishes and luck. What a day. Dr. Sheean @ UCSD, spent and hour with me. Thoroughly examing me. I was amazed at the results. I had no idea I had lost so much. I had adapted to compenstate. He thinks my direction is IBM (Inclusion Body Myositis). I will have another biopsy done, not scheduled yet, but from the last one, he believes he will see more this time. Seems only one muscle in my leg is allowing me to walk. My hands, I had no idea they were that week. I mean, I did, but again adapted for the use. My feet don't properly lift is why I stumble. I just thought they were stiff. My fall last week did crack my tail bone, so that is quite painful. Thought it was just bruised. It's so nice to finally know something. It opens more doors for me. Without a firm DX, no MDA or other nuerological research center will touch me. With MDA, you must fall into one of their 40 they treat. We always knew something happening. We faced it from the start when others would give the buts. Because we did our homework, kept our own records, directed our own treatment, this DX is just that. I plan to LIVE with this. I plan to stay postive. I don't plan to leave the group, if thats ok. Our symptoms and challenges are so common. I have been here since 2002 and you all have helped me to adapt, not lay down and cry. You helped me in finding the strength to go after so much. Thank you, Thank you, Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 , it does feel good to get a name to what we have doesn't it. i just looked up Inclusion body myositis. I'd never heard of it but it has some of the same as PLS but doesn't mention balance problems. well it doesn't matter to us what you have you're still family here so just stay as long as you what.......Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 There are other things as well that don't add up but I'm happy to reach a point where they can give it a name. Not that I'm happy to have any of this but the unknown was making me nuts. At some points I even thought I'm just crazy. Having a DX of this is better then nonspecific and in talking with others, through out their journey, some have had 2-3 different DX before they gave them ALS or PLS. The other is the fasiculations. I didn't see anything about them either and he even got see them in the office. Quote Link to comment Share on other sites More sharing options...
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