News from MS Doc
I saw my MS doc today. I am going to get 2 more doses of chemo then stop. It is too dangerous do use more, the long term damage to the body is too great. We talked about my symptoms. Although I am doing OK now for strength & movement, we talked about the steroids. The end of last summer the steroids were only lasting 2-3 weeks & not doing very well at keeping me moving. We decided then to use them when my breathing was affected. We did that in Sept two weeks after the chemo. I did so well I thought it was from the chemo. But the effects did ware off 7-8 weeks later. I kept taking the steroids but the effects wore off quicker & quicker. Now they are not lasting. The last few times I took the steroids. Took a dose three weeks last needed another. Took a dose two weeks later started to loose movement took another dose. Lasted 5 weeks now 2 week later I am getting the worsening of symptoms. So the weeks were 3-2-5-2 in between doses. It has been almost 6 months since I have had chemo I should be getting a dose in 3 weeks. I am hoping it will make the steroids work better once again. But it seems like 6 - 12 months I will be paralyzed once again, from the chest down. It is unclear if it will affect my breathing, I might have to go on a vent. I hope not but it is unclear.
It will give me the summer. Give me the summer to be with Bruce. Bruce is not well. The fluid they drained off of his chest is rate back on. Now he was told his liver is damaged & his spleen is enlarged. They increased the amount of fluid pills he is on, the one that takes the fluid off of his chest. The lung doc is going to talk to a thoracic surgeon to see about "taking out or closing off"(not sure what the doc said but one of them) the pathways from the liver,heart,spleen. Apparently they can put fluid on the chest, it does not good so the doc is going to try to stop it. When the fluid is bad Bruce can not eat because if he does eat he can not breath. I am soooooooooooo worried I do not know what to do. I read it allows me to escape to go some where else. I do not know how much longer Bruce can live.
I have been thinking back to last Sept. When I was paralyzed from the chest down. I remember thinking "I wish I had some time to get used to the idea of being paralyzed. Some time while being able to move & do things." It was sooo hard. Having to accept personal care. Someone putting me on the commode. Helping me wash (them washing my butt). Bowel care. Feeding me. Well I got my wish. I have had since the end of Sept movement. Slowly getting better. I am standing now working to be able to walk (at least for a little while). They still put me on the commode but I take care of the bowel care. They clean the site of my super-pubic catheter site. They help me shave (so they can put on the bandage & tape). They wash my legs, the whole back half of myself. When the paralysis comes back I will not be able to wash any part of my body myself. I will have to accept more help. I may or may not be able to feed myself. They will have to wash my pare-care & bowel care (not looking forward to that). But I am in a better frame of mind. Last year is was all so new. I was still very angry. Not being dx until it was too late. Having to live in hospital away from Bruce. I was angry at the way the nurses were treating me. Now most of that is worked out. When I was first here the nurses did not give me privacy. They would put me on the commode (my room was at the nurses station) & they would come in without knocking or leave my door open or come in & want to do my blood sugar. Now come on. Now the nurses give all of us privacy. Now when someone is on the commode they knock then ask through the door if you are done. My physiologist says I am a breath of fresh air. I insist the staff treat us like people. If I see a staff member treating others badly I will put in a complaint. I have been speaking up for those who can not speak up for themselves. Any-who I got my wish I got to get used to the idea of being paralyzed while still being able to move. Get used to personal care slowly. It still makes me sad.
Last week I saw my OT & my "chair people" & I had to talk about my symptoms. We also talked about my slow decline & I cried. It is hard to face. Even now I am numb in my feet, hands,low legs, low arms, groin, low belly, bottom of chest. At my bottom bra strap I am very numb & feel like I am being squeezed (the tightness is MS hug) it is not limited to feeling the tightness though I can not move my bottom 3-4 ribs so I can not take a deep breath. At present it is not all of the time about half of the time. I am also getting spasms in my left hand that hurt. I am also getting spasms in my legs where all of the muscles spasms at the same time. My legs lift off of the bed or what ever. The spasm last from 10-40 sec's then it stops & my legs drop. The spasms are any where I am numb. When I was paralyzed from the chest down the spasms included my chest & I could not breath when the spasms hit. It was scary.
When the paralysis starts to come back I will have to rely on my support systems.
It will give me the summer. Give me the summer to be with Bruce. Bruce is not well. The fluid they drained off of his chest is rate back on. Now he was told his liver is damaged & his spleen is enlarged. They increased the amount of fluid pills he is on, the one that takes the fluid off of his chest. The lung doc is going to talk to a thoracic surgeon to see about "taking out or closing off"(not sure what the doc said but one of them) the pathways from the liver,heart,spleen. Apparently they can put fluid on the chest, it does not good so the doc is going to try to stop it. When the fluid is bad Bruce can not eat because if he does eat he can not breath. I am soooooooooooo worried I do not know what to do. I read it allows me to escape to go some where else. I do not know how much longer Bruce can live.
I have been thinking back to last Sept. When I was paralyzed from the chest down. I remember thinking "I wish I had some time to get used to the idea of being paralyzed. Some time while being able to move & do things." It was sooo hard. Having to accept personal care. Someone putting me on the commode. Helping me wash (them washing my butt). Bowel care. Feeding me. Well I got my wish. I have had since the end of Sept movement. Slowly getting better. I am standing now working to be able to walk (at least for a little while). They still put me on the commode but I take care of the bowel care. They clean the site of my super-pubic catheter site. They help me shave (so they can put on the bandage & tape). They wash my legs, the whole back half of myself. When the paralysis comes back I will not be able to wash any part of my body myself. I will have to accept more help. I may or may not be able to feed myself. They will have to wash my pare-care & bowel care (not looking forward to that). But I am in a better frame of mind. Last year is was all so new. I was still very angry. Not being dx until it was too late. Having to live in hospital away from Bruce. I was angry at the way the nurses were treating me. Now most of that is worked out. When I was first here the nurses did not give me privacy. They would put me on the commode (my room was at the nurses station) & they would come in without knocking or leave my door open or come in & want to do my blood sugar. Now come on. Now the nurses give all of us privacy. Now when someone is on the commode they knock then ask through the door if you are done. My physiologist says I am a breath of fresh air. I insist the staff treat us like people. If I see a staff member treating others badly I will put in a complaint. I have been speaking up for those who can not speak up for themselves. Any-who I got my wish I got to get used to the idea of being paralyzed while still being able to move. Get used to personal care slowly. It still makes me sad.
Last week I saw my OT & my "chair people" & I had to talk about my symptoms. We also talked about my slow decline & I cried. It is hard to face. Even now I am numb in my feet, hands,low legs, low arms, groin, low belly, bottom of chest. At my bottom bra strap I am very numb & feel like I am being squeezed (the tightness is MS hug) it is not limited to feeling the tightness though I can not move my bottom 3-4 ribs so I can not take a deep breath. At present it is not all of the time about half of the time. I am also getting spasms in my left hand that hurt. I am also getting spasms in my legs where all of the muscles spasms at the same time. My legs lift off of the bed or what ever. The spasm last from 10-40 sec's then it stops & my legs drop. The spasms are any where I am numb. When I was paralyzed from the chest down the spasms included my chest & I could not breath when the spasms hit. It was scary.
When the paralysis starts to come back I will have to rely on my support systems.
Replies
hey kace I know how exactly you feel, I was in the exact same position as you when I was paralyses from the neck down and living in the hospital. the whole process is difficult and embarrassing to begin with but when they treat patients with no respect it is damn demoralizing and I remember thinking to myself how can these people get away with it.
It is like our bodies no longer belong to us, the lack of personal privacy I also hated, I remember wearing hospital gowns that only had three buttons in the back and my ass was always hanging out, my door would be open with the public walking by in full site, in today\'s world you would think they could design a better garment that would allow some personal dignity, or close the damn door.
and like you they always barged in without knocking, being extremely loud waking me out of a peaceful sleeps, felt like I was being tortured at Guantanamo Bay.. haha
well done your a voice being heard, I wish I would have been in your group, keep up the great work, it sounds like you are making a difference in others life\'s!
My dear friend, I want you to know how often I think of you and Bruce and wish we didn\'t live so far away from each other. Some day...
Yes, you have been such a supporter for those with no voice who are patients in your hospital. You will probably never know what a difference you have made for them.
Gentle hugs and joined at the heart, Linda
Praying for you and Bruce. Thanks for speaking out for yourself and others who cannot speak up. Linda is right, you may never know what a difference you\'ve made for so many.
You are amazingly blessed with great insights.
Thanks for sharing.
Linda
kayce, you are one amazing woman. i feel like i know you through your journal. thank you for sharing so much of yourself with us.i am glad you are looking at all of this with such strength and a strong voice in the face of all who do not understand. nothing is a given with our disease or bruce\'s issues, but facing it head on as you are, gives me the push to do the same.
prayers & hugs, connie
im praying for you it wont come back and you will be just you are now and bruce will get better .god brought you this far he can do miracles as he is doing how for you .just what you write you are a strong person it makes me think why im so up with the things that are happening to me .its nothing you are going through .your always in my thought and have a great day love ya girl april
Oh Kayce, so much you have to endure. You are a strong woman and will get through this all, because you have no choice, but you will do it with dignity. Your mind is sharp and that will keep the attendants on their toes.
I think of you and Bruce so often, and am very sorry to hear about his health. You must remain strong to endure the future. I will be continuing to pray for Bruce daily about his health. I will continue to pray for you to remain strong for what you may have to endure.
You make all my problems seem like something-nothing. I so admire you. I hope Bruce gets well and soon. You have no idea the inspiration you are to me. Thank you so very much!