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debbie-b
11-20-2013, 07:57 AM
Even though I had to stop MTX a couple of months ago, I was doing pretty good. The pain was mild to moderate, something I could live with.
Yesterday my husband and I went to an event, which was located on the second floor. We decided to walk up and not take the elevator. It turned out to be a mistake, I barely made it up the stairs, I was in agony with pain in my hip.
We also walked down the stairs ( yeah, I am a moran), the pain was worse, my right hip and my left foot hurt so much, I wanted to cry.
It was like my body was saying" STOP, you are over doing it.
I am all bummed out now, because I thought I was doing so well, until yesterday.

Debbie

Saysusie
11-20-2013, 09:45 AM
Debbie;
You are doing well! So many of us cannot walk up stairs at all, nor can we walk down stairs. Too many of us are confined to our beds or couches. So, you are doing well. I am sure that you are not doing as well as you'd like to be, but look at it this way: You made it up the stairs and down the stairs..you made it!!
Perhaps you can continue to take the stairs, but only in much smaller increments until your body tells you that you can do them all. So, consider this a small victory on your way to a larger victory. Yes, your body was not quite ready for the leap that you took, but perhaps, in time, it will be. Keep going, just do not overdo again.
I do hope that you feel better very soon. I am rooting for you (lol)

Peace and Blessings
Namaste
Saysusie

debbie-b
11-20-2013, 03:58 PM
Debbie;
You are doing well! So many of us cannot walk up stairs at all, nor can we walk down stairs. Too many of us are confined to our beds or couches. So, you are doing well. I am sure that you are not doing as well as you'd like to be, but look at it this way: You made it up the stairs and down the stairs..you made it!!
Perhaps you can continue to take the stairs, but only in much smaller increments until your body tells you that you can do them all. So, consider this a small victory on your way to a larger victory. Yes, your body was not quite ready for the leap that you took, but perhaps, in time, it will be. Keep going, just do not overdo again.
I do hope that you feel better very soon. I am rooting for you (lol)

Peace and Blessings
Namaste
Saysusie

Hi Susie,

I understand what you are saying and agree with you, that many other lupies are worse off than me, but for me it is a major setback. I have never had such a hard time, getting up or down the stairs. I was always able to climb stairs, slowly, but I did. This time I barely made it.
The main reason I have mentioned this, is because I thought I was doing pretty good, painwise, without the MTX.

Debbie

Abbyrition
11-27-2013, 11:48 PM
Hi Debbie,

I know we've posted a couple times back amd forth. Recentley I was told to stop my MTX as well, as well as the steroids. The MTX was because my hair was falling out by the handful daily. The steroids stopped because I wasn't getting the level of relief I felt I should be, in fact I didn't think they were doing much at all.

Well, something was helping and it's been taken away & now I'm in pain & severly low on spoons. I was out of bed today for all of 3 hours. Sad, just sad. The joint pain is horrible. I fear losing use of my hands again. Today I thought, I need puppet strings and a responsible puppet master. Puppets have all their joints on strings with someone else moving them.

I know Susie meant well, and I know somtimes it's helpful to be grateful for what we do have, as it could always be worse. I also know just because it could be worse doesn't deminish he pain we are in, the mental hurtles we have to go through when having a set back. It's like dealing with the diagnosis phase all over again. The desire to be the level of sick you were just last month, the bargains you whisper in the dark, "I promise not to wish to be well ever again, just let me have back what I had last month & I won't complain, or take for granted my body anymore." Loss is a horrible thing, but with this disease I've found so many different levels to the loss. The bad part is the loss doesn't just come and get it over with... It waits until you think you have a handle on that last loss and then hits you again.

I'm very sorry to those worse off than I am. I know this struggle can be hard at any step in the process. The statement of at least you still have use of your legs is the equivelant to someone saying "at least it's not cancer". I know Susie that you only meant well and support, but as someone identifying with Debbie's struggle right now your comment struck a personal chord. I hope you don't take offense at my words while I try to explain my feelings about how your comment made me feel.

And Debbie, I can only offer you sympathy and understanding! May you fond some relief to get you better, or at least back to your old normal soon! How does one make Thanksgiving dinner without using hands?

debbie-b
11-28-2013, 07:47 AM
Hi Debbie,

I know we've posted a couple times back amd forth. Recentley I was told to stop my MTX as well, as well as the steroids. The MTX was because my hair was falling out by the handful daily. The steroids stopped because I wasn't getting the level of relief I felt I should be, in fact I didn't think they were doing much at all.

Well, something was helping and it's been taken away & now I'm in pain & severly low on spoons. I was out of bed today for all of 3 hours. Sad, just sad. The joint pain is horrible. I fear losing use of my hands again. Today I thought, I need puppet strings and a responsible puppet master. Puppets have all their joints on strings with someone else moving them.

I know Susie meant well, and I know somtimes it's helpful to be grateful for what we do have, as it could always be worse. I also know just because it could be worse doesn't deminish he pain we are in, the mental hurtles we have to go through when having a set back. It's like dealing with the diagnosis phase all over again. The desire to be the level of sick you were just last month, the bargains you whisper in the dark, "I promise not to wish to be well ever again, just let me have back what I had last month & I won't complain, or take for granted my body anymore." Loss is a horrible thing, but with this disease I've found so many different levels to the loss. The bad part is the loss doesn't just come and get it over with... It waits until you think you have a handle on that last loss and then hits you again.

I'm very sorry to those worse off than I am. I know this struggle can be hard at any step in the process. The statement of at least you still have use of your legs is the equivelant to someone saying "at least it's not cancer". I know Susie that you only meant well and support, but as someone identifying with Debbie's struggle right now your comment struck a personal chord. I hope you don't take offense at my words while I try to explain my feelings about how your comment made me feel.

And Debbie, I can only offer you sympathy and understanding! May you fond some relief to get you better, or at least back to your old normal soon! How does one make Thanksgiving dinner without using hands?

Thank you for your post.
I do not take offence from your or Susies post, because I do know, that I am better off than some of our friends.
But as for me, I am getting worse and can't take any meds that would help me to be somewhat in the well area. The only point I was trying to make was that without the MTX I can't do the things I was able to do when I was on MTX.
I have autoimmune hepatitis and my liver is moderatly damaged, for that reason I can't take MTX, Celebrex or even Mobic or any other kind of Lupus medication. That just means that I will get to a point where I will get much worse.
I was always able to climb stairs, I had to do it slower than other people, but now I can barely do it, it is just a matter of time, where I can;t do it at all. Even walking is getting hard for me. What do have to look foreward to?
Like I said, I totally understand what Susie was saying and I did not take it as negative advise.
I wish you and everyone a very happy Thanksgiving and hope your hands will work for you. My hands are pretty wothless some days too.


Debbie