Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Been having a rough time of it.
The steroids are waring off quicker & quicker. I was told this will happen. My MS doc told me steroids do not work forever. I thought the chemo would work better then it did.
I am not having the frequent attacks like I was, so there is that. The chemo worked for that. I am having trouble dealing with the disability.
This losing a piece of yourself a bit at a time. Knowing that in a few short months I will be paralyzed from the chest down. Slowly after the steroids I have to face the loss. I do not know how to deal with it.
I was able to stand & start to walk. Taking a few shaky steps. But I was doing it slowly moving forward. But then the steroids stop working as well as they once did. The effects of them are only holding a few days before I start the decline. I finished the last course of steroids Sunday & today I am getting worse once again. I am scheduled for chemo July 5. We are hoping the chemo will make the steroids work better.
It did that last yr. The steroids were only working for a couple of weeks. But after the chemo they worked for 7 weeks. It has been going down hill ever since.
I am scared. About chemo, there is some bad side effects that can happen, some of them life threatening. But I want the summer with Bruce, being ok. Being able to move.
I am also scared of how much I will lose. How quickly I will lose it. Last yr when I was first admitted to the long term hospital I now live in. My breathing was affected. I was asked over & over again if I wanted to live on a ventilator. It was a couple weeks after chemo so I was given steroids instead of waring off after a couple of weeks they kept on working. Now I am going to have to face the decision once again. I am hoping to put it off for 6 months b/c of the chemo I am going take.
I am upset with the disability. I would love to walk/cook or what ever. To be able to depend on myself. Most of the time I deal with it ok. Go on with my life. That is part of the reason I volunteer at the sexual assault center. Doing that makes me feel like I am making a difference
I am also (once again) having trouble with some of the staff here. I am going to have to go to the head nurse about the latest problem. I keep trying to tell myself the nurses are people too. They have problems just like everyone else. That it is not personal, they have bad days just like everyone else
Some how I will get through this.
Just having a bit a trouble dealing with it.
Thanks to everyone, the support helps more then you can know.
The steroids are waring off quicker & quicker. I was told this will happen. My MS doc told me steroids do not work forever. I thought the chemo would work better then it did.
I am not having the frequent attacks like I was, so there is that. The chemo worked for that. I am having trouble dealing with the disability.
This losing a piece of yourself a bit at a time. Knowing that in a few short months I will be paralyzed from the chest down. Slowly after the steroids I have to face the loss. I do not know how to deal with it.
I was able to stand & start to walk. Taking a few shaky steps. But I was doing it slowly moving forward. But then the steroids stop working as well as they once did. The effects of them are only holding a few days before I start the decline. I finished the last course of steroids Sunday & today I am getting worse once again. I am scheduled for chemo July 5. We are hoping the chemo will make the steroids work better.
It did that last yr. The steroids were only working for a couple of weeks. But after the chemo they worked for 7 weeks. It has been going down hill ever since.
I am scared. About chemo, there is some bad side effects that can happen, some of them life threatening. But I want the summer with Bruce, being ok. Being able to move.
I am also scared of how much I will lose. How quickly I will lose it. Last yr when I was first admitted to the long term hospital I now live in. My breathing was affected. I was asked over & over again if I wanted to live on a ventilator. It was a couple weeks after chemo so I was given steroids instead of waring off after a couple of weeks they kept on working. Now I am going to have to face the decision once again. I am hoping to put it off for 6 months b/c of the chemo I am going take.
I am upset with the disability. I would love to walk/cook or what ever. To be able to depend on myself. Most of the time I deal with it ok. Go on with my life. That is part of the reason I volunteer at the sexual assault center. Doing that makes me feel like I am making a difference
I am also (once again) having trouble with some of the staff here. I am going to have to go to the head nurse about the latest problem. I keep trying to tell myself the nurses are people too. They have problems just like everyone else. That it is not personal, they have bad days just like everyone else
Some how I will get through this.
Just having a bit a trouble dealing with it.
Thanks to everyone, the support helps more then you can know.
Amy
Feel free to say anything you need to say here. We're always here for you.
Gentle hugs and joined at the heart, Linda
I had an uncle that was taking them every day for years! He died suddenly and was a wreck.
My mother had MS as well and used steroids as well. She developed problems for them -- i.e. cataracts.
I have never had steroids and I don't want any of them.
They are a "quick fix" so to speak and I believe that they do more harm than good when taken too often.
As for chemo, I don't know what to say about it. I wouldn't consider it as I do not have cancer, I have MS.
Try to find something to take up your extra time and stay busy. I commend you for volunteering at the sexual abuse center. Maybe others can direct you to others sources/places.
In the meantime, I hope you feel better soon. I've gone up and down with this crap disease for years now.
Right now, I am doing fairly good and I am not going to let MS stop me from living my life, no I will not!
Hang in there ...
Be angry, be sad, be afraid, be lonely then stop. Repeat when necessary. Just dont forget to stop. Think of yourself as a toy train. All toy trains de-rail now and then. Pick yourself up, dust yourself off and get back on track. Never, never, never, never give up.
You will remain in my daily thoughts.
Thank goodness that you have Bruce. I hope that he can help you through this, esp. the part about the trouble with the staff. Having a person advocate for you would really mean something.
I wish you well. Please do something good for yourself every day and every hour. We are here with you.