Aa
Shadowsister update
Our dear DJ continues to struggle - as most of you have already surmised she is possibly the most physically compromised by MS of all of us here yet continues to be a bright spot for many of us.
It has been a hel lish time for her and hasn't been getting any better lately. Because I believe we share the good and the bad of this disease, I asked if I could share this latest update with all of you, and with her permission I can tell you - for some of you this may be TMI but most of you will want to know -
She has been experiencing spasms everywhere in her body - she says its like Russian Roulette in that she doesn't know where its going to hit next. This of course is keeping her from getting much sleep and absolutely no rest. And in lots of pain.
Her morphine pump is working correctly but is not helping with the pain.
The doctor did a CAT scan last week to see if they can pinpoint the cause of the shooting pains she also is having. One of her previous cath changes there was a problem with hte changeout and a tip may still be in her and could be causing additional nerve damage.
She has ileus - her bowels are somewhat paralyzed but the doctor today said he could still hear faint sounds, which is good. On top of that she has edema from her kidneys not flowing.
She had a major episode of spasms and acid reflux which left her in a bad way. A spasm hit her tracheotomy tube and blew it out, making it unusable. she had to get another one from her corner pharmacy, at a small $$. She has the dropseys right now, and proceeded to drop her new one as well. She said unfortunately the 3 second rule doesn't apply to these - they cannot be used if contaminated. Needless to say, she was not happy about the extra expense.
DJ has another doctor appt. on Wednesday and one on Thursday. Her doctors are working hard to find a way to slow this next progression of her MS.
True to DJ's spirit, she continues to find good in so much, and wanted me to emphasize to all of you that she is "going to work through this and its not going to beat me." She says she intends to keep her word and stay more active here, once this all quiets down again.
Her computer keyboard is still on the fritz, so she is unable to answer a lot of your notes, but know that she reads each and every one of them and appreciates being thought of more than she can express.
DJ is a woman of immense faith, and appreciates all of your prayers and warm wishes, so keep them coming. Please take a moment sometime soon and think of DJ as she continues to battle this MiSerable disease.
my best,
Lulu
It has been a hel lish time for her and hasn't been getting any better lately. Because I believe we share the good and the bad of this disease, I asked if I could share this latest update with all of you, and with her permission I can tell you - for some of you this may be TMI but most of you will want to know -
She has been experiencing spasms everywhere in her body - she says its like Russian Roulette in that she doesn't know where its going to hit next. This of course is keeping her from getting much sleep and absolutely no rest. And in lots of pain.
Her morphine pump is working correctly but is not helping with the pain.
The doctor did a CAT scan last week to see if they can pinpoint the cause of the shooting pains she also is having. One of her previous cath changes there was a problem with hte changeout and a tip may still be in her and could be causing additional nerve damage.
She has ileus - her bowels are somewhat paralyzed but the doctor today said he could still hear faint sounds, which is good. On top of that she has edema from her kidneys not flowing.
She had a major episode of spasms and acid reflux which left her in a bad way. A spasm hit her tracheotomy tube and blew it out, making it unusable. she had to get another one from her corner pharmacy, at a small $$. She has the dropseys right now, and proceeded to drop her new one as well. She said unfortunately the 3 second rule doesn't apply to these - they cannot be used if contaminated. Needless to say, she was not happy about the extra expense.
DJ has another doctor appt. on Wednesday and one on Thursday. Her doctors are working hard to find a way to slow this next progression of her MS.
True to DJ's spirit, she continues to find good in so much, and wanted me to emphasize to all of you that she is "going to work through this and its not going to beat me." She says she intends to keep her word and stay more active here, once this all quiets down again.
Her computer keyboard is still on the fritz, so she is unable to answer a lot of your notes, but know that she reads each and every one of them and appreciates being thought of more than she can express.
DJ is a woman of immense faith, and appreciates all of your prayers and warm wishes, so keep them coming. Please take a moment sometime soon and think of DJ as she continues to battle this MiSerable disease.
my best,
Lulu
Friday update- Donna asked that I let you know the pain meds appear to have kicked in. The doctor really ccranked up the morphine and she was finally able to get some sleep last night. She appreciates all the prayers and thoughts sent her way - and she promises she will post her own update tonight or over the weekend. - Lulu
Also, roncart is absolutely right about checking out your cholesterol meds - I had to give up lipitor for that very reason. It is definiely a hot topic right now and if you want to read more send me a PM and I'll send you a link to a different site with conversations happening about this very subject.
be well all,
Lu
Also, roncart is absolutely right about checking out your cholesterol meds - I had to give up lipitor for that very reason. It is definiely a hot topic right now and if you want to read more send me a PM and I'll send you a link to a different site with conversations happening about this very subject.
be well all,
Lu
I am a newbie here and I wanted you to know that I am praying for you. I pray that God heals your ailments and comforts you in your time of despair. Having been tortured by nightly muscle spasms myself i cannot imagine having to live with them in all body parts day and night. On a personal note I just wanted to let you know that personally for me being on cholestrol pills worsened my muscle spasms immensely. I do not know if Dj or anyone else out there takes cholestrol pills but if you do it is worth giving them up for a week to see if it makes a difference for you as it did for me.I was on them for almost 5 years with no problem then 5 mos. ago I started to get nightly leg spasms. I was getting them 6 and 7 times a night.The zanaflex did not hold them off. I never gave those cholestrol pills a second thought until I read an article in my paper talking about leg cramps and cholestrol medicine. I told my husband I was going to stop taking them to see if it helped and it did. I still get some cramping during the day but at least I get to rest at night again. I hope this helps. God Bless.........roncart
Lulu, I read your latest update and started crying, and keep crying. DJ's starting to get grumpy; no small wonder. What lessons we are learning from this strong (in so many ways) and lovely lady! I feel like a wimp for complaining about my intercostal muscle spasms; they just hurt a little, not fracture my bones!
Oh, DJ, love, I hope they get a handle on the spasms and the pain; something good needs to come out of all those doctor's visits. You deserve some grumpy time, though I know your faith and strength won't let you stay there.
Sending you love and prayers and gentle hugs,
Kathy
Oh, DJ, love, I hope they get a handle on the spasms and the pain; something good needs to come out of all those doctor's visits. You deserve some grumpy time, though I know your faith and strength won't let you stay there.
Sending you love and prayers and gentle hugs,
Kathy
Please wish her well, I don' know how she copes, 3 fractured vertebrae! :(
She really is an inspiration to us all.
Mand
She really is an inspiration to us all.
Mand
Quick update - We chatted by phone for quite a while last night - the word from the doctor and the CT scan is DJ has 3 fractured vertebrae and several more that have collapsed. These have probably been caused by the intense spasms she experiences. No wonder she is in constant pain. And the spasms don't allow her time to heal either.
She is scheduled for more tests next week. And believe it or not, she is getting grumpy from all the doctor visits and the pain. :-) I would have been out of my mind months ago with what she has put up with.
as always,
L
She is scheduled for more tests next week. And believe it or not, she is getting grumpy from all the doctor visits and the pain. :-) I would have been out of my mind months ago with what she has put up with.
as always,
L
Thank you for posting about your struggles. You seem to remain a very positive person, and for that I am so grateful to have read your posts, it is inspirational. I wish you well, and hope things will turn for the better for you.
You will be in my thoughts and prayers,
Michelle
You will be in my thoughts and prayers,
Michelle
DJ -
You ask how do you thank us, and as I'm almost through Laura's update and then start reading your response, I'm asking myself, what words can describe the love and compassion back to her so she feels it just as strongly as she just poured it out.
All I can do is thank you DJ, because of how you give yourself to us, and how you fight and for how you love and for your strong faith.
Big hugs,
love,
shell
You ask how do you thank us, and as I'm almost through Laura's update and then start reading your response, I'm asking myself, what words can describe the love and compassion back to her so she feels it just as strongly as she just poured it out.
All I can do is thank you DJ, because of how you give yourself to us, and how you fight and for how you love and for your strong faith.
Big hugs,
love,
shell
You are such an inspiration! My current relapse seems like chump change compared to your daily battles and struggles.
I hope that the docs can get this latest relapse with the spasms under control SOON.
You and your family remain in thoughts and prayers.
Hugs,
Ren
I hope that the docs can get this latest relapse with the spasms under control SOON.
You and your family remain in thoughts and prayers.
Hugs,
Ren
DJ,
Just reading your post. Thinking of you and praying for you and hope your doc can give some relief.
Sally
Just reading your post. Thinking of you and praying for you and hope your doc can give some relief.
Sally
DJ, you are inspiring, and we all appreciate your sharing the downs as well as the ups with us. I hope they get some of these things smoothed out and functioning better for you. I'll be looking to see if you have any news tonight.
Bio
Bio
I hope all of you can feel the love I sending out to you. I can honestly say, " I would have a far more difficult time facing the long journey ahead of me, without your love & support."
I believe that because The Lord knew what was lying in front of me, He sent me to the "inspire web site" where Lulu saw my post that I was looking for a support group. She took the time to message me the link to "Med Help", I wasn't sure of what sort of support I would receive, but I have learn to trust that "gut" feeling, (mainly because I know I am in God's Hands.)
From the very first post I felt safe but not sure how much of "my journey" I should be completely honest about. See I didn't want to scare you, and I sure didn't want pity. I can tell you that there isn't any pity, but a whole lot of empathy and love. Believe me it's a two way street.
I have been blessed with a remarkable Family, Especially my Daughter Cheri. She has been with me from Day One, through 49 stays in the hospital, etc... but unless you are living with having MS it is nearly impossible to understand how many different ways MS can effect everyday life, how normal natural events like having a BM needs to be celebrated, even a small one, ;-) or how horribly painful such an event can be. ;-( Or how spilling numerous cups of coffee is irritating as (hello), but you keep pouring another cup and changing clothes...;-) We are a determined group of people, aren't we !!!
How do I ? THANK YOU FOR GIVING ME A PLACE WHERE I CAN LET "ALL HANG OUT" not just the MS stuff, but also express my faith,which is a huge part of me, share family stuff ..You have made me feel not just accepted but Loved and Cared about.
Lulu, you are such a "SWEETHEART" to setup a page that makes it so easy for me to reach every one with one post. Hopefully it wont be long and HP will figure out why my keyboard and computer Refuse To talk to one another... At least I do have the "On- Screen Keyboard" which I am getting better and speedier at using... See the trick is trying to find something positive when everything seems to not work..
Well, time is getting short, need to get ready to see Dr. Dahi and get the results of The CT scan, then it's off to the lab for more blood work followed up with more glamor shots of my tummy area. I'll try to get on line tonight and let you know what Dr, Dahi found on the scan...
SENDING ALL OF YOU HUGMOUNGEST HUGS, LOADS OF LOVE and saying morning prayers for each of you.
{{{{~!~}}}} DJ
PS; this isn't just about me, I am going to look at your pages to see how you are doing? I NEED & WANT TO KNOW what is happening in your Lives, "The Good, The Bad.....ETC
I believe that because The Lord knew what was lying in front of me, He sent me to the "inspire web site" where Lulu saw my post that I was looking for a support group. She took the time to message me the link to "Med Help", I wasn't sure of what sort of support I would receive, but I have learn to trust that "gut" feeling, (mainly because I know I am in God's Hands.)
From the very first post I felt safe but not sure how much of "my journey" I should be completely honest about. See I didn't want to scare you, and I sure didn't want pity. I can tell you that there isn't any pity, but a whole lot of empathy and love. Believe me it's a two way street.
I have been blessed with a remarkable Family, Especially my Daughter Cheri. She has been with me from Day One, through 49 stays in the hospital, etc... but unless you are living with having MS it is nearly impossible to understand how many different ways MS can effect everyday life, how normal natural events like having a BM needs to be celebrated, even a small one, ;-) or how horribly painful such an event can be. ;-( Or how spilling numerous cups of coffee is irritating as (hello), but you keep pouring another cup and changing clothes...;-) We are a determined group of people, aren't we !!!
How do I ? THANK YOU FOR GIVING ME A PLACE WHERE I CAN LET "ALL HANG OUT" not just the MS stuff, but also express my faith,which is a huge part of me, share family stuff ..You have made me feel not just accepted but Loved and Cared about.
Lulu, you are such a "SWEETHEART" to setup a page that makes it so easy for me to reach every one with one post. Hopefully it wont be long and HP will figure out why my keyboard and computer Refuse To talk to one another... At least I do have the "On- Screen Keyboard" which I am getting better and speedier at using... See the trick is trying to find something positive when everything seems to not work..
Well, time is getting short, need to get ready to see Dr. Dahi and get the results of The CT scan, then it's off to the lab for more blood work followed up with more glamor shots of my tummy area. I'll try to get on line tonight and let you know what Dr, Dahi found on the scan...
SENDING ALL OF YOU HUGMOUNGEST HUGS, LOADS OF LOVE and saying morning prayers for each of you.
{{{{~!~}}}} DJ
PS; this isn't just about me, I am going to look at your pages to see how you are doing? I NEED & WANT TO KNOW what is happening in your Lives, "The Good, The Bad.....ETC
DJ when I complain or feel like complaining I think of you and I am ashamed.
My you be touch by his hand and spirit as you continue to battle on.
Hugs and Prayers
terry
My you be touch by his hand and spirit as you continue to battle on.
Hugs and Prayers
terry
Lots of prayers headed your way that your upcoming appointments will be able to help you feel better.
ST
ST
Sending you all my good wishes to get some relief from all these problems. Please know that I and all of us think of you often with great affection.
ess
ess
DJ, you have taught all of us many lessions...the biggest one being, to never give in. Continue to fight with everything that we have.
We all gain such insipration from you. You touch more lives that you will ever know about. My little aches and pains are bearable, knowing what you endure everyday. That teaches me about having a strong spirit. YOU!
I love you with all my heart, even though we have never met. One day we will meet though.... That's a promise.
Heather
We all gain such insipration from you. You touch more lives that you will ever know about. My little aches and pains are bearable, knowing what you endure everyday. That teaches me about having a strong spirit. YOU!
I love you with all my heart, even though we have never met. One day we will meet though.... That's a promise.
Heather
I was just reading as you posted. I will add extra prayers for you tomorrow at opur noon service. Take care deqar heart. You are in the best hands...God's
gentle hugs
Maggie
gentle hugs
Maggie
You have such a wonderful advocate in Lulu. We appreciate knowing how you are doing even if you can't tell us yourself. But, hang in there dear lady and know our thoughts and prayers are with you and your doctors in trying to get to the bottom of this.
Love you lots,
Julie
Love you lots,
Julie
Thinking of you & hoping that you feel better soon! Thanks Lulu for the update.
Chrisy
Chrisy
Thanks for the update, Lulu. I think of DJ every day; her faith and positive outlook have touched me. Since I saw the pictures of her during your visit, it is easy for me to picture her lovely face when I'm feeling out of sorts, and know that my problems aren't as large as they seem, and can believe that things will get better.
You're in my prayers and my heart, DJ. I'm looking forward to the day when all this stuff you're going through quiets down so you can join us more often. I wish I could take your pain away.
Thinking of you with love,
Kathy
You're in my prayers and my heart, DJ. I'm looking forward to the day when all this stuff you're going through quiets down so you can join us more often. I wish I could take your pain away.
Thinking of you with love,
Kathy
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