Hopefully better days to come
I have had an OK week. Even though I have been losing feeling & function for the past week, I did not let it get me down. I reminded myself the steriods worked very well the last time I got them. Being on the chemo made the steriods work better & longer. So on tues. I phoned the MS clinic & talked to the nurse. I wanted to know if the chemo could be pushed back a couple of weeks so I could get steriods. I was told before I got the first dose of the chemo that I could not have steriods two weeks before or after the chemo. Of course I get the next dose of chemo in just under two weeks. I talked to my doc from here today & explained that the nurse from the MS clinic said for him to call my MS doc. He did & they came up with a solution. In stead of giving me the full dose of steriods (1000 mg x 3 days IV) they are giving me 500 mg x 2 days. It should help since I can still move & the numbness is just starting. They both believe as I do, it is better to keep up the physio.
I am also getting better at not over doing it. It was a bad week for me phyically. So I did not do my exercises I do on my own. I also told my physio gal I could not do the bike. When she came in today to stretch me out, I was able to tell her I was in too much pain today. When I was up later, I talked to the head physio gal. She said I did the right thing,she was pleased I was able to take it ease for this week. She said it helps her to know I will not push myself too hard, & when I ask to do more either in time on the bike or different exercises. She said she does not have to worry that I am pushing to hard to fast. We are learning to trust each other.
I feel more comfortable here, with myself, & my disease. It is good that I could take this set back in stride. I do not even look at it as a set back. Just a new thing learned. I am going to ask to get high dose steriods every 4 weeks, I will keep my function waiting for the chemo to kick in. It really looks like I can make it home.
My home OT brought up another point. Her concern is my medical care may be too much for at home. Because I get infection easily she does not know if I can get the care. I will have to look at how often a home nurse can come in. It may also be possible that I may not need the super-pubic catheter for ever. The doc I saw said if I could cath myself & show that I can they would just pull it. They can clamp it off & see if I can manage, also if I can pee on my own the same thing. There might be also the possiblity that I can learn how to do the dressing. I think it is less likely I would get an infection at home. Without all of the hospital "bugs".
I am going to have to learn to note my symptoms, not just to take them. I was getting tired, I just thought I was over doing it. I was told that it was the first sign of the steriods waring off. I think not being dx for so long I leart to just take how I was feeling, not to try to do anything about it. Once again, it is another thing learned.
I was thinking of starting a log on my symptoms. It is easy for me to accept something new & ignore it. That is the only way I survived the last eight years. It did not matter what was going on I was told over & over again nothing was wrong. Last year even when my legs went numb I did not tell my doc, I was in so much pain for so long when the numbness came all of the pain my my legs left. It felt good, & it could have been the diabetes right. I know I was an idiot, but going to the doc one week earlier would not have made a difference. Also when things keep going wrong & you are told there is nothing wrong you start to believe that you are crazy, or you are making a big deal over nothing.
It is such a big difference having a doc who believes you. The family doc I have at home believes me, his only complaint about me is trying to fight through everything & not accepting the disease. I think it is good to fight, to try to get as good as you can. My MS doc believes the same thing. The doc I have here also believes me. It is such a difference, he respects my opinion. He says it is my body, it is my choice.
I am also getting better at not over doing it. It was a bad week for me phyically. So I did not do my exercises I do on my own. I also told my physio gal I could not do the bike. When she came in today to stretch me out, I was able to tell her I was in too much pain today. When I was up later, I talked to the head physio gal. She said I did the right thing,she was pleased I was able to take it ease for this week. She said it helps her to know I will not push myself too hard, & when I ask to do more either in time on the bike or different exercises. She said she does not have to worry that I am pushing to hard to fast. We are learning to trust each other.
I feel more comfortable here, with myself, & my disease. It is good that I could take this set back in stride. I do not even look at it as a set back. Just a new thing learned. I am going to ask to get high dose steriods every 4 weeks, I will keep my function waiting for the chemo to kick in. It really looks like I can make it home.
My home OT brought up another point. Her concern is my medical care may be too much for at home. Because I get infection easily she does not know if I can get the care. I will have to look at how often a home nurse can come in. It may also be possible that I may not need the super-pubic catheter for ever. The doc I saw said if I could cath myself & show that I can they would just pull it. They can clamp it off & see if I can manage, also if I can pee on my own the same thing. There might be also the possiblity that I can learn how to do the dressing. I think it is less likely I would get an infection at home. Without all of the hospital "bugs".
I am going to have to learn to note my symptoms, not just to take them. I was getting tired, I just thought I was over doing it. I was told that it was the first sign of the steriods waring off. I think not being dx for so long I leart to just take how I was feeling, not to try to do anything about it. Once again, it is another thing learned.
I was thinking of starting a log on my symptoms. It is easy for me to accept something new & ignore it. That is the only way I survived the last eight years. It did not matter what was going on I was told over & over again nothing was wrong. Last year even when my legs went numb I did not tell my doc, I was in so much pain for so long when the numbness came all of the pain my my legs left. It felt good, & it could have been the diabetes right. I know I was an idiot, but going to the doc one week earlier would not have made a difference. Also when things keep going wrong & you are told there is nothing wrong you start to believe that you are crazy, or you are making a big deal over nothing.
It is such a big difference having a doc who believes you. The family doc I have at home believes me, his only complaint about me is trying to fight through everything & not accepting the disease. I think it is good to fight, to try to get as good as you can. My MS doc believes the same thing. The doc I have here also believes me. It is such a difference, he respects my opinion. He says it is my body, it is my choice.
Replies
I like the \"team approach\" you now have on all fronts for your care. It really seems to be working for you and I think it has made things so much easier for you to fight this thing physically and not so much emotionally. It\'s so hard when we have been told for a long time that there\'s nothing wrong and we stop listening to our bodies and ignore them when they scream at us. It\'s good that you are listening carefully and taking note of your symptoms so your team can give you the best care possible. Thanks as always for your candor and insight. Gentle hugs. Linda
You said you had an \"okay\" week, but I think, reading through your journal, that you probably really had a good week. You learned so much about yourself, your doctors and your physcio\'s. It\'s funny how one person perceives differently from others. Read back through your journal, and tell me you didn\'t make progress this week. I think you will surprise yourself. Keep up the good work. Lynne
Kayce, you are such an inspiration! You are doing such a good job listening to your body and knowing when enough is enough. Keep up the good work!