Another mess up
What a day yesterday was. The weird thing is it did not upset me, a few months ago it would have.
I was told I had an appointment at the MS clinic. All I do when I go is talk to the doc & nurse, then he checks my legs for movement & strength. I can be in my wheelchair & go by access bus. When I got there I checked in with the secretary. She told me I did not have an appointment with the MS doc I was booked in the outpatient procedure unit for chemo. She called the nurse for the MS clinic & she came to talk to me. I could not have chemo then b/c I did not have the blood work & other tests done that need to be done before the chemo. So I came back here.
Bruce was very upset about it. He is afraid another mistake in my health care could kill me. He said the reason we are apart is so I get the care that I need. He also told me he is afraid I will get more lesions in my brain & will be unable to let them know when mistakes happen. I think he needs to know I will be taken care of if something happens to him.
I talked to my SW today about this. She told me she will talk to Bruce, most things are better since coming here. A few hrs after seeing the SW, she brought the charge nurse to my room. We talked about what we think happened (the mix up) & how to do things in the future. She is going to talk to the MS nurse, get the list of tests that need to be done. They are going to put down in writing for Bruce who is going to be responsible for what & when. They said this will never happen again.
For some reason this did not upset me. I was not hurt by it & something positive happened. A friend suggested a check list be made, with all of the tests & things that need to be done. Including meds that need to be ordered, the IV, everything that needs to be done. A day or two before chemo the charge nurse or my nurse of the day to go through it & make sure everything is checked off. I think it is a good idea & I am going to bring up the idea to the charge nurse tomorrow.
I have been a bit down in the dumps the last week. I was getting more paralisis so I asked for the steroids (last week). The chemo is supost to shrink lesions, from my symptoms it has not done so. When I talked to the MS nurse I told her I had ?'s for the MS doc. I want to know what % shrinkage can we expect. I also wanted to know how many doses will I need to see results. Also the norm dose is 12 mg /M skin. I take 8 mg/M skin. The doc did not want to overwhelm my system, to make my white cells drop too much. My white cells are at 8 (norm is 4-10) he said he would like them at 3. To slow down my inmume system, to stop it from attacking my nurves. So I asked if we should go to the 12 mg/M skin. Just so many things up in the air.
I think part of the reason for being down is my symptoms. The numbness is getting worse, even taking the steriods. My feet & legs are numb or partly numb all of the time. Sometimes I can not move my legs. I can no longer do the bike in physio, I do exercises on my own, to keep my legs moving & muscles stretched out. I also get numbness in the bottom of my chest. At times I can not move the bottom 2-3 ribs, so I can not take a deep breath. I was told eventually the steriods will no longer work. I am afraid I will go back to the way I was last sept, parilsed from the chest down. The parilsis also went high enough that I could barely breath. If that happens I will end up on a vent. It is the hope that the chemo will shrink the lesions before the steriods stop working.
Well there is nothing to do but move forward. I am trying not to focus on what could happen. Trying to focus on each day, to enjoy each day. To live life in the now and not the what if's.
I was told I had an appointment at the MS clinic. All I do when I go is talk to the doc & nurse, then he checks my legs for movement & strength. I can be in my wheelchair & go by access bus. When I got there I checked in with the secretary. She told me I did not have an appointment with the MS doc I was booked in the outpatient procedure unit for chemo. She called the nurse for the MS clinic & she came to talk to me. I could not have chemo then b/c I did not have the blood work & other tests done that need to be done before the chemo. So I came back here.
Bruce was very upset about it. He is afraid another mistake in my health care could kill me. He said the reason we are apart is so I get the care that I need. He also told me he is afraid I will get more lesions in my brain & will be unable to let them know when mistakes happen. I think he needs to know I will be taken care of if something happens to him.
I talked to my SW today about this. She told me she will talk to Bruce, most things are better since coming here. A few hrs after seeing the SW, she brought the charge nurse to my room. We talked about what we think happened (the mix up) & how to do things in the future. She is going to talk to the MS nurse, get the list of tests that need to be done. They are going to put down in writing for Bruce who is going to be responsible for what & when. They said this will never happen again.
For some reason this did not upset me. I was not hurt by it & something positive happened. A friend suggested a check list be made, with all of the tests & things that need to be done. Including meds that need to be ordered, the IV, everything that needs to be done. A day or two before chemo the charge nurse or my nurse of the day to go through it & make sure everything is checked off. I think it is a good idea & I am going to bring up the idea to the charge nurse tomorrow.
I have been a bit down in the dumps the last week. I was getting more paralisis so I asked for the steroids (last week). The chemo is supost to shrink lesions, from my symptoms it has not done so. When I talked to the MS nurse I told her I had ?'s for the MS doc. I want to know what % shrinkage can we expect. I also wanted to know how many doses will I need to see results. Also the norm dose is 12 mg /M skin. I take 8 mg/M skin. The doc did not want to overwhelm my system, to make my white cells drop too much. My white cells are at 8 (norm is 4-10) he said he would like them at 3. To slow down my inmume system, to stop it from attacking my nurves. So I asked if we should go to the 12 mg/M skin. Just so many things up in the air.
I think part of the reason for being down is my symptoms. The numbness is getting worse, even taking the steriods. My feet & legs are numb or partly numb all of the time. Sometimes I can not move my legs. I can no longer do the bike in physio, I do exercises on my own, to keep my legs moving & muscles stretched out. I also get numbness in the bottom of my chest. At times I can not move the bottom 2-3 ribs, so I can not take a deep breath. I was told eventually the steriods will no longer work. I am afraid I will go back to the way I was last sept, parilsed from the chest down. The parilsis also went high enough that I could barely breath. If that happens I will end up on a vent. It is the hope that the chemo will shrink the lesions before the steriods stop working.
Well there is nothing to do but move forward. I am trying not to focus on what could happen. Trying to focus on each day, to enjoy each day. To live life in the now and not the what if's.
Replies
Mt 6:34 \"So, never be anxious about the next day, for the next day will have its own anxieties. Sufficient for each day is its own badness.\"
You are so right. We can\'t waste today worrying about what might or might not come tomorrow. Today might end up being one of our best days and we would have let it slip by. You have such a wonderful attitude.
Gentle hugs and joined at the heart, Linda
Wow Kayce, you are so inspiring! In the face of struggles I can\'t even imagine, your last paragraph hit the nail on the head, speaking volumes about your character. I needed to read this today, and it has truly humbled me. I will follow in your example and try to live life in the now! I agree with Linda, you do have such a wonderful attitude!
I have and will think about you often and keep you in my prayers:) thanks for being the example you are.
~Tracy
ditto to all of the above.....but most of all I LOVE YOU!!! You are an amazing Angel!!!
You and Bruce are always in my daily prayers.
XO
Dee
Your journal entry and the comments you have received today speak volumes don\'t you know? You truly are an inspiration Kayce.