Hard times!!!!!
I have been having a hard time. I have slowly been getting worse. The steroids are not working as long any more. They have changed them to IV, as they are now making me sick. I finished the last treatment 1.5 weeks ago. I am already getting worse. I can not take them again so soon.
I saw my MS doc last week. We talked about the steroids not working any more. He said it was expected. He told me the chemo can only be giving 3-4 times. People who got more yr later are getting very ill. Heart problems & certain cancers. He did say he has been getting away with 3 or 4 doses. I told him about how sick my Hubby is. I asked about taking one more dose of the chemo. I brought up what happened the end of last summer (the end of Aug beginning of Sept 2011). The steroids were only working 2-3 weeks. Then I got a dose of chemo two weeks later. I expected them to ware off in a couple of weeks but they kept on working for 7.5 weeks total. They are now at the point of 2-3 weeks once again. Bruce & I talked & I would like a good summer. We do not know how much longer Bruce will live, so the summer is important to us. I am hoping they can do that surgery & he will keep on going for yrs to come. But we have learned to take one day at a time. To enjoy our visits together.
I was told at the MS clinic appointment I will be paralyzed again. The chemo (if it works) will buy me a few months but it is going to happen. Today it is hard to move my legs, to raise my right leg is very hard (it is hard to believe I was standing & taking steps last week) When this started to happen over the weekend I was upset. I did talk to physio about it & I am not standing, we are going to wait until after chemo & see if things get better. My arms are number & so are my legs. My groin if numb & can not tell if I have to go to the bathroom. I got that tight band about my lower ribs, from the bra strap down. So I can not move the lower ribs to take a deep breath. I find it scarey when my breathing is effected. I have desided to go on a vent should the need happen. I do not want to smother. That is too scarey to think about.
I have been noticing my mind is slowly getting worse. It is harder to think clearly when tired or hot. I am getting confused more often. When Bruce is joking around or being smart sometimes I have to tell him to stop b/c he is confusing me. He stops right away when I tell him.
I had my appointment with the physiologist today. I am getting cognitive testing to get a base line of where I am at. We talked about me getting worse & I had a good cry. We talked about the fact of me never going home, that I am "home" it was very upsetting.
What is there to do. I have to learn to accept that I will be paralyzed from the chest down & I am not leaving the Hospital. I am going to have to reach out to my supports. I am going to still volunteer however, it gives me something to do that is worthwhile. It makes me feel good.
I saw my MS doc last week. We talked about the steroids not working any more. He said it was expected. He told me the chemo can only be giving 3-4 times. People who got more yr later are getting very ill. Heart problems & certain cancers. He did say he has been getting away with 3 or 4 doses. I told him about how sick my Hubby is. I asked about taking one more dose of the chemo. I brought up what happened the end of last summer (the end of Aug beginning of Sept 2011). The steroids were only working 2-3 weeks. Then I got a dose of chemo two weeks later. I expected them to ware off in a couple of weeks but they kept on working for 7.5 weeks total. They are now at the point of 2-3 weeks once again. Bruce & I talked & I would like a good summer. We do not know how much longer Bruce will live, so the summer is important to us. I am hoping they can do that surgery & he will keep on going for yrs to come. But we have learned to take one day at a time. To enjoy our visits together.
I was told at the MS clinic appointment I will be paralyzed again. The chemo (if it works) will buy me a few months but it is going to happen. Today it is hard to move my legs, to raise my right leg is very hard (it is hard to believe I was standing & taking steps last week) When this started to happen over the weekend I was upset. I did talk to physio about it & I am not standing, we are going to wait until after chemo & see if things get better. My arms are number & so are my legs. My groin if numb & can not tell if I have to go to the bathroom. I got that tight band about my lower ribs, from the bra strap down. So I can not move the lower ribs to take a deep breath. I find it scarey when my breathing is effected. I have desided to go on a vent should the need happen. I do not want to smother. That is too scarey to think about.
I have been noticing my mind is slowly getting worse. It is harder to think clearly when tired or hot. I am getting confused more often. When Bruce is joking around or being smart sometimes I have to tell him to stop b/c he is confusing me. He stops right away when I tell him.
I had my appointment with the physiologist today. I am getting cognitive testing to get a base line of where I am at. We talked about me getting worse & I had a good cry. We talked about the fact of me never going home, that I am "home" it was very upsetting.
What is there to do. I have to learn to accept that I will be paralyzed from the chest down & I am not leaving the Hospital. I am going to have to reach out to my supports. I am going to still volunteer however, it gives me something to do that is worthwhile. It makes me feel good.
Replies
Oh Kayce, I\'m so very sorry. My heart and prayers go out to you and Bruce. I\'m glad you finally made the decision to vent should you need to. Hopefully all these past months of planning for this future event will pay off now. It is better to plan when the stress of the decision if not being taken out of your control.
Glad to hear you will continue with your volunteer work. It helps solidify that you are still of value, much!
Please look into software programs that you can use in the future should you lose capability to independently use your computer. Or maybe work with one of your supports now that they will help you keep in touch with the MS world.
My thoughts and prayers are with you guys every day sweetie. Take care.
Dear Kayce, I think of you and Bruce often and pray for you always. Your strength is evident in all you write and share with all of us. What a teacher you have become to all your friends at ds! you open my mind and heart every time i read your journal entry. thank you kayce. you will be hearing from me my friend. hugs and more, connie
do you remember early on we talked about our mutual love for books? i know reading is not an option right now, but from experience i know audio books are wonderful. i am sure someone could help you get some onto your computer and get you headphones...just a thought.
Kaycee, You are such an inspiration to me. Times I want to give up, I read your journal and it helps me. I wish there was a magic wand to wave at you and Bruce and make everything better.I pray for the two of you each and every night. I like the idea of you getting audio books, that would be great. I will chat later. Hang in there, the Monster could leave as fast as he came.
Kayce,
I am praying for you and sending happy thoughts your way. Enjoy the time you share with Bruce, and hopefully you can have a nice summer. Praying for good weather too! :) Take care Kayce, and hang in there! You are not alone!
Amy
I too hope that you & Bruce can have a good summer.
And I admire your courage writing about your fears.
I hope that the weather stays cooler so we can all enjoy a cooler summer.
I have only known you a short time and already consider you a dear friend.
Peace, Love and Hugs
Hey Kayce,
you have such a great way of looking at the positives in your life, there is so much medical attention towards ms these days that it is quite possible a breakthrough for your situation could be just around the corner, hang in there mate!