Aa
A change to my weekend plans
We had planned to drive over to PA tomorrow to visit with DJ (shadowsister) for a bit. I have not seen her since last June, when she was still in LA. Now she is only a short 6 hours away, but that does involve some advance planning.
Unfortunately she is having a horrible time and we have postponed my visit for another time. The spasms are relentless - and I'm not talking the kind of spasms you and I have. These spasms have literally cause fractures in her ribs and spine, because they occur with such violent force.
The pain management people upped her morphine levels again today, which really makes me angry and sad. Obviously morphine is not what she needs to deal with the neuropathic pain she has. If morphine were the answer, she would be better by now. She needs a neuropathic pain med.
But they can't/won''t give her anything else until they can wean her off the morphine. They can't wean her off until the pain is under control. IMO, the pain won't be under control with the morphine, it is just numbing her but not going at the source of the pain or trying to turn off that connection in her brain.
She recently told me that she did not survive her brush with death this winter to live her life like this - it is that bad.
Her left arm stopped working this week - I hope that is temporary. She needs both arms to handle her transfers to the wheelchair and her other chairs. They gave her oral steroids, but in a very small dose pack that won't begin to help.
Yes, I am disapointed that we aren't making that trip tomorrow. But I am more angry that the doctors aren't working outside the box to get relief for this dear woman. She sees the new MS neuro in Pittsburgh this week - I hope this doc has some extra tricks to try.
thanks for letting me vent a bit.
Lulu
Unfortunately she is having a horrible time and we have postponed my visit for another time. The spasms are relentless - and I'm not talking the kind of spasms you and I have. These spasms have literally cause fractures in her ribs and spine, because they occur with such violent force.
The pain management people upped her morphine levels again today, which really makes me angry and sad. Obviously morphine is not what she needs to deal with the neuropathic pain she has. If morphine were the answer, she would be better by now. She needs a neuropathic pain med.
But they can't/won''t give her anything else until they can wean her off the morphine. They can't wean her off until the pain is under control. IMO, the pain won't be under control with the morphine, it is just numbing her but not going at the source of the pain or trying to turn off that connection in her brain.
She recently told me that she did not survive her brush with death this winter to live her life like this - it is that bad.
Her left arm stopped working this week - I hope that is temporary. She needs both arms to handle her transfers to the wheelchair and her other chairs. They gave her oral steroids, but in a very small dose pack that won't begin to help.
Yes, I am disapointed that we aren't making that trip tomorrow. But I am more angry that the doctors aren't working outside the box to get relief for this dear woman. She sees the new MS neuro in Pittsburgh this week - I hope this doc has some extra tricks to try.
thanks for letting me vent a bit.
Lulu
I am so sorry for you DJ, I cannot imagine the suffering you must be in. My prayers will be for you.
Oh, this is terrible news!! I am so sorry for DJ. Poor baby, how awful this must be for her. It's so sad, I hope that she will be able to get some help to relax her spasms.
She needs to have people come in and do ROM's every day.
I'm just so sad for her. I will begin praying now. Red
She needs to have people come in and do ROM's every day.
I'm just so sad for her. I will begin praying now. Red
My gosh, I feel for DJ. What a terrible, terrible thing to have to experience. I hope she can make the new neuro appointment and am praying that things get better for her.
Sure makes you feel helpless....
Addi
I'm so sorry DJ is having these terrible symptoms again. Lu, please do what you can to talk her into keeping her neuro appt. this week. Without that she has little hope of getting the right treatment.
Will this be the first she's seen a neuro since her move?
ess
Will this be the first she's seen a neuro since her move?
ess
I just read your post and feel so sorry for your friend and pray that things improve soon. It was not so long ago that Shadowsister was posting and sharing her thoughts with eveyrone.
I can also sense how hard it is for you feeling helpless that there is little you can do to help. Maybe if she hears the support from friends on this site and feels everyone's love, it will help her.
I think you also need to hear that we are all there for you also and nobody knows better than you that we all need to be able to vent sometimes. It is a hard place to be for you when you were so looking forward to going to see her, but you have done your best.
Sending you both love, hugs and prayers
Sarah x
I can also sense how hard it is for you feeling helpless that there is little you can do to help. Maybe if she hears the support from friends on this site and feels everyone's love, it will help her.
I think you also need to hear that we are all there for you also and nobody knows better than you that we all need to be able to vent sometimes. It is a hard place to be for you when you were so looking forward to going to see her, but you have done your best.
Sending you both love, hugs and prayers
Sarah x
thanks for the update, nothing but positive thoughts, love and strength being sent her way!!!
You know, i was thinking about her yesterday and wanted to ask you how she is doing but I was too afraid of the answer I might get. I am such a chicken !
Hearing about her condition causes me pain..as it probably does a lot of us. She an amazing woman, I am not sure I could take the pain she is in. I fell in love with her reading her first post on here.
Please give her my love when ypou see her..
hugs , meg
Hearing about her condition causes me pain..as it probably does a lot of us. She an amazing woman, I am not sure I could take the pain she is in. I fell in love with her reading her first post on here.
Please give her my love when ypou see her..
hugs , meg
Shell and all, since you asked and I did not speak to DJ since Friday, I picked up the phone and called. I wish that I could report something cheery and upbeat, but that is not the case.
The spasms are rampant and unrelenting. I asked her to consider the ER - which is the last thing she ever wants to do because no one in the ER really understands the spasms or how to treat her! - and she said she would consider it.
She has the neuro appt on Thursday and I urged her to not cancel it, despite how bad off she is. Someone needs to see her in this condition and figure out the treatment plan.
We talked again about the morphine and she knows that is not the answer to treating her nerve pain. That is the only drug she is taking right now and she needs something else.
I cannot begin to describe the pain and despair in her voice or in my heart after talking with her. Please keep sending your good thoughts her way and upward, too. She needs them all right now.
-L
The spasms are rampant and unrelenting. I asked her to consider the ER - which is the last thing she ever wants to do because no one in the ER really understands the spasms or how to treat her! - and she said she would consider it.
She has the neuro appt on Thursday and I urged her to not cancel it, despite how bad off she is. Someone needs to see her in this condition and figure out the treatment plan.
We talked again about the morphine and she knows that is not the answer to treating her nerve pain. That is the only drug she is taking right now and she needs something else.
I cannot begin to describe the pain and despair in her voice or in my heart after talking with her. Please keep sending your good thoughts her way and upward, too. She needs them all right now.
-L
This is so sad. The medical community making things worse for her. It is one of the reasons I won't go to any pain meds like that EVER! It's so easy for them to throw that junk at us. We want relief but that stuff is more dangerous than MS could ever be...
I hope someone becomes her advocate. She needs a strong one!!
I hope someone becomes her advocate. She needs a strong one!!
oh my goodness. such a hard story to hear, can't even begin to imagine how she is coping. what strength that must take. i don't know her but am touched to the core by this. send her my love too.
xo
xo
Lu - I hope it's not a long postponement and that you visit her soon.
DJ if you read this dear, we wrap our cyber arms around you and pray this pain subsides.
=shell
DJ if you read this dear, we wrap our cyber arms around you and pray this pain subsides.
=shell
Hey im in PA...you guys come pick me up and the three of us will give a couple what fors. They cant take 3 of us down!! Thats just sad that they are restorting her to morphine. Your right lulu, something needs to be done..perhaps a nice little call to the Department of Health? Hmm..well she is in my prayers and i hope she gets better
Inny
Inny
Give DJ my best. I am more than upset she has to have such a struggle. Hope this new Doc is a winner.
Alex
Alex
I don't know your friend but I can't help but feel sadness for her,Its nice knowing she has someone that cares very much for her.Iam Soo sorry to hear of someone going through such pain,I will be praying for her.Take care and many hugs:)
I am so sorry to hear that. I know DJ would have loved to see you guys under any other circumstance but this.
It is a shame that they resorted to the path of least resistance, the morphine. She is caught up in a vicious cycle of covering up the symptoms rather than treating them. We should both drive up there and go have a talk with the idiot who got her in this mess. Like she told you, she has come too far for her quality of life to be taken away by being given the wrong pain management treatment.
What other options does she have though? I'm up for both of us meeting up there and having a talk with the idiot who put her on this regime. Let's go!
Please let her know that she is in my thought and especially my prayers. I
Julie
It is a shame that they resorted to the path of least resistance, the morphine. She is caught up in a vicious cycle of covering up the symptoms rather than treating them. We should both drive up there and go have a talk with the idiot who got her in this mess. Like she told you, she has come too far for her quality of life to be taken away by being given the wrong pain management treatment.
What other options does she have though? I'm up for both of us meeting up there and having a talk with the idiot who put her on this regime. Let's go!
Please let her know that she is in my thought and especially my prayers. I
Julie
This makes me so sad. She is such a wonderful soul and it is such a tragedy that she is unable to find a way to live without pain. Lulu, I can see why you are angry. Something different really needs to be done.
Bless you for being her friend and standing by her. Thank you for continuing to share her struggles so that we can all keep her in our prayers.
Bless you for being her friend and standing by her. Thank you for continuing to share her struggles so that we can all keep her in our prayers.
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