Getting through
I am still tired but with the sleep I have had it is not soo bad. I was looking at my address book today & was reminded how tired I used to be. Every page that has writing on it has pen marks on it. When I was writing it out I kept falling asleep & the pen would run off of the page. I am no where near that tired now.
The pills they put Bruce on worked. He lost 8 lbs in three days. He is to take today off of them. Take one dose tomorrow & the next day he is to get blood-work done.
I am going to SAC tomorrow to pick up the info I missed the last two nights. I can then take a test. I am picking up one of their cell phones & picking out the shifts I want. Shifts that I will be on call for the crisis line.
I am starting to show signs the steroids are waring off. I am getting more numbness across my chest & upper back. I also am loosing feeling in my legs & feet. I am having other symptoms as well. They are all caused from the lesion at T2 it is very big. I am going to try to put off taking the steroids as long as I can. I do not want to wait too long though. I do not want to get paralyzed again. I lose muscle too quickly when that happens.
I am making great gains in muscle tone. Months ago I could not "bridge" (when laying in bed with knees bent lifting your butt off of the bed). Three weeks ago when I was trying to do it I could take weight off of my butt. But I could not lift it. Last week I could quickly lift my butt off of the bed almost throwing it up but it would not stay up. I could not keep it up long enough to pull up cloths. Today I was able to pull up my pants myself while "bridging". I am making great progress. I want to keep it up.
I am going to call the MS clinic tomorrow. I want to ask how much longer I have to wait to get into the clinic. I want to ask how much longer I have to wait to see the doc. I wanted to know if the dose of the chemo should be increase. I am over 2 months over due for the chemo. I hope they get their act together soon. I was told the steroids would stop working at some point. It looks like I am going to have to do the 2-2.5 yr treatment. I am still hoping it will work although it has not as of yet. Well that is partly true. It was to stop the attacks & shrink the lesions. They are hoping if the lesions shrink my symptoms will subside. But the research I have read says there is no correlation to size & amount of lesions to the amount of disability. What the research says about that is....comparing lesion size & number. There are some with few lesions with great disability & there are some with many lesions with minor disability. They have also found that although the lesions do shrink with the chemo the amount of lessening of symptoms verys from none to little. But it has stopped new attacks. I was having a new attack every couple of months. So there is that. I was given the chemo to....as my doc said "how fast I was circuling the drain. He did not think I would live out the yr.
I have to accept the fact I may be paralyzed from the chest down in a few months. I am hoping the steroids will keep working. They are holding on longer then the doc said they would. I am going to try not to think about it. Just to enjoy one day at a time. I am going to do the volunteer work I will be able to do that even if I am paralyzed from the chest down. It will keep me focused on something other then what is happening to me. Helping others helps me more then it does them.
The pills they put Bruce on worked. He lost 8 lbs in three days. He is to take today off of them. Take one dose tomorrow & the next day he is to get blood-work done.
I am going to SAC tomorrow to pick up the info I missed the last two nights. I can then take a test. I am picking up one of their cell phones & picking out the shifts I want. Shifts that I will be on call for the crisis line.
I am starting to show signs the steroids are waring off. I am getting more numbness across my chest & upper back. I also am loosing feeling in my legs & feet. I am having other symptoms as well. They are all caused from the lesion at T2 it is very big. I am going to try to put off taking the steroids as long as I can. I do not want to wait too long though. I do not want to get paralyzed again. I lose muscle too quickly when that happens.
I am making great gains in muscle tone. Months ago I could not "bridge" (when laying in bed with knees bent lifting your butt off of the bed). Three weeks ago when I was trying to do it I could take weight off of my butt. But I could not lift it. Last week I could quickly lift my butt off of the bed almost throwing it up but it would not stay up. I could not keep it up long enough to pull up cloths. Today I was able to pull up my pants myself while "bridging". I am making great progress. I want to keep it up.
I am going to call the MS clinic tomorrow. I want to ask how much longer I have to wait to get into the clinic. I want to ask how much longer I have to wait to see the doc. I wanted to know if the dose of the chemo should be increase. I am over 2 months over due for the chemo. I hope they get their act together soon. I was told the steroids would stop working at some point. It looks like I am going to have to do the 2-2.5 yr treatment. I am still hoping it will work although it has not as of yet. Well that is partly true. It was to stop the attacks & shrink the lesions. They are hoping if the lesions shrink my symptoms will subside. But the research I have read says there is no correlation to size & amount of lesions to the amount of disability. What the research says about that is....comparing lesion size & number. There are some with few lesions with great disability & there are some with many lesions with minor disability. They have also found that although the lesions do shrink with the chemo the amount of lessening of symptoms verys from none to little. But it has stopped new attacks. I was having a new attack every couple of months. So there is that. I was given the chemo to....as my doc said "how fast I was circuling the drain. He did not think I would live out the yr.
I have to accept the fact I may be paralyzed from the chest down in a few months. I am hoping the steroids will keep working. They are holding on longer then the doc said they would. I am going to try not to think about it. Just to enjoy one day at a time. I am going to do the volunteer work I will be able to do that even if I am paralyzed from the chest down. It will keep me focused on something other then what is happening to me. Helping others helps me more then it does them.
Replies
That\'s the thing with this disease, there are no certainties, no guarantees. Everyone is different and reacts differently to treatments. As they say in Vegas, it\'s a crapshoot.
As long as we do the best we can with what we have and enjoy the things we can, we\'re doing good.
Just keep your \"eye on the prize\" .
Gentle hugs, Linda
kayce, from what i read, it sounds like you are making great progress in mind and body!! keep that attitude, i think being positive helps us stop obsessing about all that does and can go wrong. glad bruce saw some relief, hopefully it will continue.
thinking of you, connie
Hurray for \"bridging\"!! Good work! So happy, too, that Bruce is doing better. You are very wise to focus on others. It can be very difficult not to get wrapped up in our own stuff. This is a portion of what was read in our church service on Sunday: \"We thank you that this struggle will one day end, and we will stand before you in purity and joy to worship you with undivided hearts and fresh new bodies, entirely devoted to your will.\"--from the book, The Valley of Vision. Good and true thoughts.
Enjoy your day!
Linda