MSNik
01-04-2008, 09:16 PM
Hey gang. Im shouting out for some support here from all of you. Thursday of next week, Im going in for surgery- female related and both physical and mental in my case....its been a long road of seeing both my Neuro and my Gyn trying to make a decision on this, and unfortunately, due to some recent developements, Im not really making this decision, its being made for me, but the end result is that im going in for the surgery and not liking it.
Im actually terrified of how this is going to affect my MS. Not so much the actual surgery, but the changes which are going to happen afterwards. Sorry to be so bunt (to all you guys) but since I am both going off of hormones, and quite possibly having some female parts removed (they wont know till they get in there if its necessary or not), I absolutely KNOW for sure that things are going to change in my system. How can they not? Ive been taking hormones (birth control) for almost 20 years.....according to all Ive read, its going to throw my system off in a huge way...and according to all the studies of estrogen and MS, this is the stupidest thing I could do- stopping taking the extra estrogen. And, again, according to all my docs BESIDES my MS docs, its a necessity at this point. So, Im going thru with it with serious reservations.
Ive been chatting on other healthboards about this stuff, trying to keep it out of the MS board, but now Im actually more worried about how its going to affect my MS and whether or not Im going to be relapsing shortly after this. Does anyone have any thoughts on this?
Really, just needed to vent tonight. Husband is more worried about the recovery time, then me at this point....thats kind of frustrating. Work is having a fit because it could be 2 days Im out, or 6 weeks....everything is so uncertain at this time....and NO one understands the whole "finalization" of doing this besides another woman who has been in this situation...so Im reaching out to you guys. This is real, happening, and scaring the heck out of me.
thanks for letting me vent.
Nikki
Im actually terrified of how this is going to affect my MS. Not so much the actual surgery, but the changes which are going to happen afterwards. Sorry to be so bunt (to all you guys) but since I am both going off of hormones, and quite possibly having some female parts removed (they wont know till they get in there if its necessary or not), I absolutely KNOW for sure that things are going to change in my system. How can they not? Ive been taking hormones (birth control) for almost 20 years.....according to all Ive read, its going to throw my system off in a huge way...and according to all the studies of estrogen and MS, this is the stupidest thing I could do- stopping taking the extra estrogen. And, again, according to all my docs BESIDES my MS docs, its a necessity at this point. So, Im going thru with it with serious reservations.
Ive been chatting on other healthboards about this stuff, trying to keep it out of the MS board, but now Im actually more worried about how its going to affect my MS and whether or not Im going to be relapsing shortly after this. Does anyone have any thoughts on this?
Really, just needed to vent tonight. Husband is more worried about the recovery time, then me at this point....thats kind of frustrating. Work is having a fit because it could be 2 days Im out, or 6 weeks....everything is so uncertain at this time....and NO one understands the whole "finalization" of doing this besides another woman who has been in this situation...so Im reaching out to you guys. This is real, happening, and scaring the heck out of me.
thanks for letting me vent.
Nikki
Sponsor
Tasia W
01-05-2008, 03:48 AM
Hi Nikki,
Definately, you are in my thoughts and prayers I am so sorry that this has not been the start of a good year for you! This surgery sounds inevitable and that you no longer have a choice in the matter. Without this surgery it sounds like your health is going to be further compromised?
Has your neuro talked to you about the physical affects of MS and undergoing surgery? Is there an increase of symptoms or flare ups following surgery?
As far as the pill go's I am not sure what to say. I have been on the pill for about three years now. Before that I was using alternate contraception. Honestly, I have not noticed much of change within myself from then and now. I actually had my worst flare up when I first went on the pill. Probably just a coincidence.
Is there any possibilities that you can continue to take hormones? So sorry Nikki instead of giving you fantastically educated answers I feel that I am asking you dumb questions. Fact is, everyday is a learning experience for me and I didnot know about the connection of the pill and MS until I began to read threads on this board.
I know that you are very very stressed! Think about yourself right now and noone else, it is your right. You take care of everyone around you and then get lost in the process. You may be out for 2 days, maybe 6 weeks....whatever downtime you need, take it cause you are strong and you are a survivor and "this too shall Pass" You need to recuperate not only physically but also mentally. Your life is being altered yet again! I am really feeling sad for you and wish that you were not being faced with this. If I could reach through the computer and give you a big hug I would!!
Nikki, do you like music? The reason I am asking you is because I just got myself a cheap mp3 player from walmart and I loaded my all-time favorite tunes on it. It was a boxing day Christmas present to myself because my hubby and I did not exchange gifts this year. I forgot how much music relaxes me, inspires me and makes me feel all around good. I didn't realize how much I missed it until I found it again. I got lost in the process of looking after everyone else and returned to something that means so much to my wellness. For you it may not be music, it might be something else... think about it and return to it. Right now this may be something that will help you both physically and mentally.
Sorry Nikki, I always try to keep it short but end up going on and on...Please keep venting away cause that is why we are all here.
I will be thinking of you next Thursday and I wish you wellness and strength!
Much hugs to you Nikki,
Tasia
Definately, you are in my thoughts and prayers I am so sorry that this has not been the start of a good year for you! This surgery sounds inevitable and that you no longer have a choice in the matter. Without this surgery it sounds like your health is going to be further compromised?
Has your neuro talked to you about the physical affects of MS and undergoing surgery? Is there an increase of symptoms or flare ups following surgery?
As far as the pill go's I am not sure what to say. I have been on the pill for about three years now. Before that I was using alternate contraception. Honestly, I have not noticed much of change within myself from then and now. I actually had my worst flare up when I first went on the pill. Probably just a coincidence.
Is there any possibilities that you can continue to take hormones? So sorry Nikki instead of giving you fantastically educated answers I feel that I am asking you dumb questions. Fact is, everyday is a learning experience for me and I didnot know about the connection of the pill and MS until I began to read threads on this board.
I know that you are very very stressed! Think about yourself right now and noone else, it is your right. You take care of everyone around you and then get lost in the process. You may be out for 2 days, maybe 6 weeks....whatever downtime you need, take it cause you are strong and you are a survivor and "this too shall Pass" You need to recuperate not only physically but also mentally. Your life is being altered yet again! I am really feeling sad for you and wish that you were not being faced with this. If I could reach through the computer and give you a big hug I would!!
Nikki, do you like music? The reason I am asking you is because I just got myself a cheap mp3 player from walmart and I loaded my all-time favorite tunes on it. It was a boxing day Christmas present to myself because my hubby and I did not exchange gifts this year. I forgot how much music relaxes me, inspires me and makes me feel all around good. I didn't realize how much I missed it until I found it again. I got lost in the process of looking after everyone else and returned to something that means so much to my wellness. For you it may not be music, it might be something else... think about it and return to it. Right now this may be something that will help you both physically and mentally.
Sorry Nikki, I always try to keep it short but end up going on and on...Please keep venting away cause that is why we are all here.
I will be thinking of you next Thursday and I wish you wellness and strength!
Much hugs to you Nikki,
Tasia
tuckersmom
01-05-2008, 08:44 AM
Nikki, I know you have had a real struggle with this. I can only say, you will be ok. No matter what. I remember sobbing for several hours the night before my gall bladder surgery 2 years ago. Not because of the gall bladder surgery but because of fear of relapse. I was terrified of what was going to happen with the MS. I had made sure I had no major things to take care of for the following couple of weeks and was mostly on "standby" or "alert" mode. Every day I woke up with the first thought being, "can I see out of both eyes, are my legs working, arms etc...". After 2 weeks, then a month then 2....nothing. It did not seem to have an effect on me at all (except I can eat fries now with doubling over in pain!:D. My neuro. had told me he could not predict what to expect and had seen some have issues with relapse but most did not.
Again, it's back to the "one step at a time". You know as well as any of us that the worry and fear can do more damage than anything else. Having had a complete hysterectomy, I can absolutely say there are benefits to not having periods anymore! If they take the ovaries, there are different ways to get the hormones you will need. That is one of the other benefits for me in using the Estriol for my MS. It takes care of the issues related to menopause.
We are all here. We will walk with you as best we can and if/when things come up, we will do whatever we can to help. Remember there are many, many prayers and good vibes being sent to you. Close your eyes on try to meditate on that when you start to get upset. Picture us all as you would guess we look like,,,, that should bring a little humor to the situation!
many hugs!
Lisa
Again, it's back to the "one step at a time". You know as well as any of us that the worry and fear can do more damage than anything else. Having had a complete hysterectomy, I can absolutely say there are benefits to not having periods anymore! If they take the ovaries, there are different ways to get the hormones you will need. That is one of the other benefits for me in using the Estriol for my MS. It takes care of the issues related to menopause.
We are all here. We will walk with you as best we can and if/when things come up, we will do whatever we can to help. Remember there are many, many prayers and good vibes being sent to you. Close your eyes on try to meditate on that when you start to get upset. Picture us all as you would guess we look like,,,, that should bring a little humor to the situation!
many hugs!
Lisa
cindys601
01-05-2008, 10:04 AM
Nikki~
I wanted to jump in and say that I'm thinking of you and your fears to come. Whenever something is coming that I totally dread, I just focus on getting it done, because once its over, the worries are less. Try to focus your energy in a deferent direction instead of worry because you know Lisa's right and the stress and worry will do more damage than the surgery itself!!
Secondly, your recovery time is the most essential piece. You need to give your body time to heal and relax. If your worrying about feeling better because you need to get back to work, it will only make you feel more tired and unready. Trust me, I do this to myself all the time and it's never to my benefit. DONT feel guilty about your needs. YOU are important and have to take care of yourself because your the only one who can or will.
So try to find a good book, some great music like Tasia said or do someting you really enjoy this week that you haven't done in a long time. When I'm stressed, I find a craft project to start. Crochet a blanket or something. I may never finish it but it takes my mind to another place, away from the things that are bothering me.
nikki, I know your worried but as you know, whatever is going to happen, will happen. You'll cope because your strong!! Maybe too, NOTHING will happen and you'll come out smelling like a rose!! You do have angels watching over you...:angel:
And remember that we're all here if you need us!!
cindy
I wanted to jump in and say that I'm thinking of you and your fears to come. Whenever something is coming that I totally dread, I just focus on getting it done, because once its over, the worries are less. Try to focus your energy in a deferent direction instead of worry because you know Lisa's right and the stress and worry will do more damage than the surgery itself!!
Secondly, your recovery time is the most essential piece. You need to give your body time to heal and relax. If your worrying about feeling better because you need to get back to work, it will only make you feel more tired and unready. Trust me, I do this to myself all the time and it's never to my benefit. DONT feel guilty about your needs. YOU are important and have to take care of yourself because your the only one who can or will.
So try to find a good book, some great music like Tasia said or do someting you really enjoy this week that you haven't done in a long time. When I'm stressed, I find a craft project to start. Crochet a blanket or something. I may never finish it but it takes my mind to another place, away from the things that are bothering me.
nikki, I know your worried but as you know, whatever is going to happen, will happen. You'll cope because your strong!! Maybe too, NOTHING will happen and you'll come out smelling like a rose!! You do have angels watching over you...:angel:
And remember that we're all here if you need us!!
cindy
MS for life
01-05-2008, 10:18 AM
Okay, I'll throw a laugh your way. I thought I wasn't having any visual changes, but lately I've been wondering. Then when I looked at your post, I thought it said "Needing a little vertical support here folks..." I read all the posts and was still confused, then my brain must have finally settled, because I realized what it really said. Well, here's your "virtual" support.
I have a sister just diagnosed with HPV virus, early stage cervical cancer and since she is probably (42 and divorced with one child) not going to have anymore children at this point in her life, the doctor wants to go in and remove as much of her insides as he can (I know that is not very technical). My point, I was diagnosed with MS and the next day she found this out. So, the stress on my poor family, six kids, was quite heavy at Christmas. My sister summed it up with, when you guys were kids you always did act like twins with some secret connection. Now you can't even get sick on your own. We'll just take one day at a time. Good luck, know you are trying to do what's best and the hubby will just have to deal with it if you are not able to recuperate on his time table. The same with work.
I have a sister just diagnosed with HPV virus, early stage cervical cancer and since she is probably (42 and divorced with one child) not going to have anymore children at this point in her life, the doctor wants to go in and remove as much of her insides as he can (I know that is not very technical). My point, I was diagnosed with MS and the next day she found this out. So, the stress on my poor family, six kids, was quite heavy at Christmas. My sister summed it up with, when you guys were kids you always did act like twins with some secret connection. Now you can't even get sick on your own. We'll just take one day at a time. Good luck, know you are trying to do what's best and the hubby will just have to deal with it if you are not able to recuperate on his time table. The same with work.
MSNik
01-05-2008, 10:43 AM
TO ALL OF YOU:
I love you guys. Thanks so much for sending out those words of wisdom right now. Each of you made a point which hit home, and I appreciate it.
Tasia, its not surprising that you had the worst relapse of your life when you started the pill, anytime you change hormones in your body, you are most subject to relapses....part of why Im so sure something is going to go really wrong with MY body when I stop the pill. Ive been on it roughly 20 years....
You also asked about music. Unfortunately, Im extremely sensitive to noises, there is nothing I can do about it, but the one thing I had to stop doing, is headphones, or ear bugs...they KILL me! I do listen to radio while driving in my car, keeping in mind, Im in the car the better part of 9 hours a day for work, but I find it to be distracting sometimes, not relaxing. I dont know why this is, but I keep trying. I used to LOVE music, now its more of a headache to me. Ill keep trying, Maybe Ill have to find a new venue of music to appreciate...
Lisa, what can I say? The very picture of you sobbing prior to gall bladder surgery is NOTHING new to me! Im already sobbing my eyes out laying in bed at night, and its still 5 days away. My husband thinks its all hormonal, but we know better. I am not planning a hysterectomy, instead only minor changes to my insides, but because of what they saw on the ultrasound, anything is possible right now, and they are planning for the worse. The doctor wont commit to anything, but he is making me sign all the releases because he thinks there is a better than 50-50 chance that Im having more removed then we orginally thought.
The whole close your eyes and picture what we look like- did you get that ffom me? I think I told someone once that I used to do that in the MRI, while I was trying to block out the noises and feeling of boredom. Its a great idea and a good way to pass the time, but Im not entirely convinced of what Ill be thinking as they take me down to surgery! But, I promise to think of each and every one of you while they are prepping me!
And, you of all people do understand the whole estriol thing. I dont know what is going to happen and at this point, cant begin to predict- but I will be letting you know. Promise you that!
Cindy, thank you for reminding me about the importance of recovery time. Youre absolutely right. WIth my husband being out of work, with my new promotion in play (and Im interviewing for another job currently and have had 2 rounds of interviews so far) Im putting more pressure on myself that necessary, Im sure....I just want this to be OVER and to FEEL BETTER. The idea that I could actually have more on my plate then I realize, is terrifying. But, thank you for reminding me to take care of me. Sometimes, I really want to run away and forget that I have responsiblities to others...maybe for one week, I can mentally check out. That would be nice.
And, MSforLife,
You cracked me up. If you want to say verticle, go ahead. What the heck? Most of my words are coming out backwards right now too. I am sorry to hear about your sister, and the timing of all this is awful. You did have alot on your plate for the holidays, didnt you? Youre comment about my hubby having to deal with his issues is also very true. I keep wanting to be perfect for everyone, and do everything right - its not going to happen this time around. For once I think im going to be begging for someone to look out for me. Hmmm. I wonder how to even begin doing that. I guess Ill have to figure it out as I go along. Should be interesting, and Ill keep you posted....ill be thinking of your sister, sending her virtual/verticle hugs!
All of you, thank you again. You all make my life alittle easier. Youre all so wise and full of wisdom. Most of you dont even realize how much you contribute when you are asked for support, do you? Youre all wonderful and I love you all. Have a great weekend and Ill try not to lose it between now and thursday. But I know if I do, where to come!
Big hugs,
Nikki
I love you guys. Thanks so much for sending out those words of wisdom right now. Each of you made a point which hit home, and I appreciate it.
Tasia, its not surprising that you had the worst relapse of your life when you started the pill, anytime you change hormones in your body, you are most subject to relapses....part of why Im so sure something is going to go really wrong with MY body when I stop the pill. Ive been on it roughly 20 years....
You also asked about music. Unfortunately, Im extremely sensitive to noises, there is nothing I can do about it, but the one thing I had to stop doing, is headphones, or ear bugs...they KILL me! I do listen to radio while driving in my car, keeping in mind, Im in the car the better part of 9 hours a day for work, but I find it to be distracting sometimes, not relaxing. I dont know why this is, but I keep trying. I used to LOVE music, now its more of a headache to me. Ill keep trying, Maybe Ill have to find a new venue of music to appreciate...
Lisa, what can I say? The very picture of you sobbing prior to gall bladder surgery is NOTHING new to me! Im already sobbing my eyes out laying in bed at night, and its still 5 days away. My husband thinks its all hormonal, but we know better. I am not planning a hysterectomy, instead only minor changes to my insides, but because of what they saw on the ultrasound, anything is possible right now, and they are planning for the worse. The doctor wont commit to anything, but he is making me sign all the releases because he thinks there is a better than 50-50 chance that Im having more removed then we orginally thought.
The whole close your eyes and picture what we look like- did you get that ffom me? I think I told someone once that I used to do that in the MRI, while I was trying to block out the noises and feeling of boredom. Its a great idea and a good way to pass the time, but Im not entirely convinced of what Ill be thinking as they take me down to surgery! But, I promise to think of each and every one of you while they are prepping me!
And, you of all people do understand the whole estriol thing. I dont know what is going to happen and at this point, cant begin to predict- but I will be letting you know. Promise you that!
Cindy, thank you for reminding me about the importance of recovery time. Youre absolutely right. WIth my husband being out of work, with my new promotion in play (and Im interviewing for another job currently and have had 2 rounds of interviews so far) Im putting more pressure on myself that necessary, Im sure....I just want this to be OVER and to FEEL BETTER. The idea that I could actually have more on my plate then I realize, is terrifying. But, thank you for reminding me to take care of me. Sometimes, I really want to run away and forget that I have responsiblities to others...maybe for one week, I can mentally check out. That would be nice.
And, MSforLife,
You cracked me up. If you want to say verticle, go ahead. What the heck? Most of my words are coming out backwards right now too. I am sorry to hear about your sister, and the timing of all this is awful. You did have alot on your plate for the holidays, didnt you? Youre comment about my hubby having to deal with his issues is also very true. I keep wanting to be perfect for everyone, and do everything right - its not going to happen this time around. For once I think im going to be begging for someone to look out for me. Hmmm. I wonder how to even begin doing that. I guess Ill have to figure it out as I go along. Should be interesting, and Ill keep you posted....ill be thinking of your sister, sending her virtual/verticle hugs!
All of you, thank you again. You all make my life alittle easier. Youre all so wise and full of wisdom. Most of you dont even realize how much you contribute when you are asked for support, do you? Youre all wonderful and I love you all. Have a great weekend and Ill try not to lose it between now and thursday. But I know if I do, where to come!
Big hugs,
Nikki
Pens'nChalk
01-05-2008, 11:10 AM
Hello Nikki,
You will be in my thoughts and prayers this week. You've offered so much helpful information and patient wisdom to so many others on this site. It's time now, as Tasia said, to let yourself relax. I'd always heard that maternity nurses have more fears in the labor room than most of us, and I'm guessing that your responsible pursuit of knowledge of MS and related issues has added to your apprehension. That's not said as a suggestion that you reach out less often for information, but rather that you allow the positives that you have found and shared to sink in, and let yourself trust in the doctors' parallel quest for information and treatment options. Far better to be here in this decade, experiencing this, than decades ago, when so much more was unknown, unanticipated, and so unaddressed. Have faith - in your own resilience, in your doctors' awareness, and in the fact that, as a teacher friend once told me, "June is on the calendar - I looked." This will be all in the past by then. Flip ahead on your calendar, find a date, mark it, and plan something precious for yourself on that day, trusting yourself to be whole and well and ready to celebrate:angel:.
You will be in my thoughts and prayers this week. You've offered so much helpful information and patient wisdom to so many others on this site. It's time now, as Tasia said, to let yourself relax. I'd always heard that maternity nurses have more fears in the labor room than most of us, and I'm guessing that your responsible pursuit of knowledge of MS and related issues has added to your apprehension. That's not said as a suggestion that you reach out less often for information, but rather that you allow the positives that you have found and shared to sink in, and let yourself trust in the doctors' parallel quest for information and treatment options. Far better to be here in this decade, experiencing this, than decades ago, when so much more was unknown, unanticipated, and so unaddressed. Have faith - in your own resilience, in your doctors' awareness, and in the fact that, as a teacher friend once told me, "June is on the calendar - I looked." This will be all in the past by then. Flip ahead on your calendar, find a date, mark it, and plan something precious for yourself on that day, trusting yourself to be whole and well and ready to celebrate:angel:.
cindys601
01-05-2008, 11:13 AM
Hi Nikki~
Your comment "Sometimes, I really want to run away and forget that I have responsiblities to others...maybe for one week, I can mentally check out. That would be nice."...
I think this all the time myself, I seriously start to think how I can do it, make plans in my head and all. How if I could just not have so much to do, so many people to take care of, less responsibilty, life would be so sweeeeet and I could REST!!!
Then BAM!! reality hits me and I know I'm here for a reason. Too much depends on that. Then I think to myself, just get through today and you'll be okay...;)
Tomorrows another day
Your comment "Sometimes, I really want to run away and forget that I have responsiblities to others...maybe for one week, I can mentally check out. That would be nice."...
I think this all the time myself, I seriously start to think how I can do it, make plans in my head and all. How if I could just not have so much to do, so many people to take care of, less responsibilty, life would be so sweeeeet and I could REST!!!
Then BAM!! reality hits me and I know I'm here for a reason. Too much depends on that. Then I think to myself, just get through today and you'll be okay...;)
Tomorrows another day
Avenue Q
01-05-2008, 02:18 PM
Nikki...from all the very caring and words of wisdom that have been posted. There really isn't much more to say except you need to think right now what's right for you. Your family is quite capable of taking care of themselves and the home. Right now its time to think of yourself and let your family take care of you and your needed recovery time. I know it sounds very selfish and any mother would find it difficult to reason with. But sometimes we aren't given choices.
I had the gallbladder surgery 4 years ago and I didn't have any changes with my MS, and I pray you won't as well. The stress level will probably be the worse thing you can do for yourself...Of course we all think of the worse and that's only human nature. Take the advice of all your board buddies, your always the one that seems to have words of inspiration for everyone. So now its your turn so collectively use the tips offered here and read if you can. Or do the virtual thing...and recall all the most pleasant things that you have done, or may have been rewarded for.
Your posts have always sent me a message of being a very confident women. You will get through this with the many prayers being sending your way and numerous well wishes.
I hope you hospital stay will be the shorter of days predicted and not the ladder. Just take one day at a time don't rush your recovery time that's most important for any recovery . Hey take advantage of it think of it as a mini vacation away from the normal hussle N bussle out here.
Your surgery sounds very much a necessity and I wish you well.. My thoughts and prayers are with you and all will be on board and wishing you well. Your a well liked and appreciated person on this board for all the information you post..
Follwing your surgery get your *** back as soon as possible...a little JERSEY humor ..smile :) and keep your chin up. Think good happy thoughts that's my percription for you. hugs
Lu:angel:
I had the gallbladder surgery 4 years ago and I didn't have any changes with my MS, and I pray you won't as well. The stress level will probably be the worse thing you can do for yourself...Of course we all think of the worse and that's only human nature. Take the advice of all your board buddies, your always the one that seems to have words of inspiration for everyone. So now its your turn so collectively use the tips offered here and read if you can. Or do the virtual thing...and recall all the most pleasant things that you have done, or may have been rewarded for.
Your posts have always sent me a message of being a very confident women. You will get through this with the many prayers being sending your way and numerous well wishes.
I hope you hospital stay will be the shorter of days predicted and not the ladder. Just take one day at a time don't rush your recovery time that's most important for any recovery . Hey take advantage of it think of it as a mini vacation away from the normal hussle N bussle out here.
Your surgery sounds very much a necessity and I wish you well.. My thoughts and prayers are with you and all will be on board and wishing you well. Your a well liked and appreciated person on this board for all the information you post..
Follwing your surgery get your *** back as soon as possible...a little JERSEY humor ..smile :) and keep your chin up. Think good happy thoughts that's my percription for you. hugs
Lu:angel:
taosdaphne
01-05-2008, 05:00 PM
Nikki, I can only share my own expeience. Back in 1994 I had 10 hours of major, major back surgery: fiusion of L2-L4 and a laminectomy. Day after surgery, when two burly guys were trying to help me stand, my legs turned to noodles and down I went to the floor. Everyone decided they would wait till I got to the rehab hospital to try again. In retrosspect this was my first real MS attack, and I spent 5 weeks in that rehab hospital working my rear off to get better, but it was a way slow road (5 weeks,back brace, etc.) . Whether the trauma of all that surgery brought it on or not, I don't know--but I woud def. talk about MS and surgery issues with surgeon,MS specalist, and anesthesiologist--there my be alternate drugs to knock you out, and you certainly won't be out for 10 hours!
Good luck and keep us posted.
Daphne
Good luck and keep us posted.
Daphne
april1848
01-05-2008, 09:07 PM
You are in my thoughts and prayers too, Nikki. Do use your recovery time to your advantage--the husband and job will wait.
I'm sad that you have to go through so many things at once. But you seem to be a very strong woman, and no doubt you will get through what's coming.
And everyone here is praying for you and wishing you well. Please keep us posted.
I'm sad that you have to go through so many things at once. But you seem to be a very strong woman, and no doubt you will get through what's coming.
And everyone here is praying for you and wishing you well. Please keep us posted.
MSNik
01-05-2008, 09:38 PM
APRIL, LU, DAPHNE and Penns N Chalk (and of course Cindy)-
Thank you all. You guys are so wonderful. Some of you are newcomers to this board and I have only "known" you a short time but you are so much a part of my extended family that all I can do is tell you Im so very grateful for your kind words and warm thoughts.
Pens'nChalk, what you said about picking a day on the calendar and doing something for myself- thats the best plan Ive heard in awhile...it relates to what Cindy and I were talking about, with checking out mentally for a few days. Instead of actually checking out, I think Im going to pick a date in March and go do a whole day of nothingness for ME. Whether it means a spa day or making plans to have a liquid lunch with a buddy I havent seen in awhile or even finding a quiet place in a park somewhere to read a good book, Im going to mark it as Nikki's day and do just that! I cant wait to pick that date..but first, I have to get thru next week...but thank you for the suggestion.
Cindy, when did "one day at a time' become an MS saying? I thought it was a 12 step thing...:D But youre right. Just get thru today, tomorrow has to be better. Ill be saying that on Wed night and thinking of you, ok? I find myself saying it quite a bit these days..."this too shall pass" is my mantra, affirmation and catch all for my thoughts anymore...but you know what? Today was good. I spent some quality time with my husband and a good friend of his who needed some emotional support. I came home to all these wonderfully supportive messages. Today, was a good day! (hope youre having one too)
Lu, thank you for your kindness and support. Youre absolutely right about what you wrote about thinking of this as a mini vacation and letting others take care of me. I appreciate that you said that I sound both confident as well as inspirational to others. On a normal week for me, I try to be both. I work so hard at showing our scared newbies that life isnt going to change drastically and that anything is possible to achieve- it IS. I fully believe that. But its times like this, when my weaknesses show and my sense of confidence leaves me. Thank you for reminding me that in general, im able to deal with things. I can and will deal with this too.
Daphne. Youve taught me so much about MS life and challenges. Your posts always leave me awe inspired. (snow shoes?!:D). You are absoutely right that communication is key with my doctors...unfortunately, this caused me quite a bit of stress. My MS doc and my Gyn do NOT agree on this whole thing....my MS doc is a huge proponent of birth control, hormones, etc..whereas my GYN is a huge proponent of me not having a stroke, blood clot or other problem. He is also been my doc for 12 years, where Ive only had an MS doc for 1.5. That being said, my GYN is also very aware of my history with cysts, problems and general health. My MS doc, being the specialist he is, is convinced that MS is the only disease in the world. I have had them communicate, even been in the room while one has spoken to the other. The bottom line was that I have to look at my overall health and worry about what is going on which cant be seen. I have to trust that the ultrasounds and tests Ive had by my GYN are Just as important as the MRIs my MS doc gives me. I kind of had to make up my own mind on what way to handle this....until last week. Things changed, another cyst erupted and more problems arose...at this point, surgery is necessary. However, your point about alternative ways to have surgery are now making me think hard.
I will be discussing things further with my GYN and the anesthesiologist this week PRIOR to being put to sleep! Thank you for once again giving me some serious food for thought. Im sorry the experience you had was so horrible. I can only guess that since youve been doing so well for quite some time now, the back issues have been resolved and the MS appears to be very stable at this time. Hugs to you.
April Again, thank you for thinking of me as strong. Usually, I would say yes I am...these days, Im feeling just alittle overwhelmed and freaked out. But, the prayers you offer are gratefully accepted and I will keep you all posted. As soon as I can get online, Ill drop you a line to let you know my status...I loved your comment about the husband and job will wait. They will, wont they? I need to believe that more than anything else. I dont have the most supportive husband in the world, and right now, he is testing my patience and more...but, youre absolutely right. I have to put me first and he will have to prove his stuff this time around. Every now and then he comes thru and reminds me why I love him....cross your fingers this is one of those times.
Thanks to all of you. Hope you all have wonderful weekends and healthy weeks ahead. I am so grateful for your friendship. please know that.
Nikki
Thank you all. You guys are so wonderful. Some of you are newcomers to this board and I have only "known" you a short time but you are so much a part of my extended family that all I can do is tell you Im so very grateful for your kind words and warm thoughts.
Pens'nChalk, what you said about picking a day on the calendar and doing something for myself- thats the best plan Ive heard in awhile...it relates to what Cindy and I were talking about, with checking out mentally for a few days. Instead of actually checking out, I think Im going to pick a date in March and go do a whole day of nothingness for ME. Whether it means a spa day or making plans to have a liquid lunch with a buddy I havent seen in awhile or even finding a quiet place in a park somewhere to read a good book, Im going to mark it as Nikki's day and do just that! I cant wait to pick that date..but first, I have to get thru next week...but thank you for the suggestion.
Cindy, when did "one day at a time' become an MS saying? I thought it was a 12 step thing...:D But youre right. Just get thru today, tomorrow has to be better. Ill be saying that on Wed night and thinking of you, ok? I find myself saying it quite a bit these days..."this too shall pass" is my mantra, affirmation and catch all for my thoughts anymore...but you know what? Today was good. I spent some quality time with my husband and a good friend of his who needed some emotional support. I came home to all these wonderfully supportive messages. Today, was a good day! (hope youre having one too)
Lu, thank you for your kindness and support. Youre absolutely right about what you wrote about thinking of this as a mini vacation and letting others take care of me. I appreciate that you said that I sound both confident as well as inspirational to others. On a normal week for me, I try to be both. I work so hard at showing our scared newbies that life isnt going to change drastically and that anything is possible to achieve- it IS. I fully believe that. But its times like this, when my weaknesses show and my sense of confidence leaves me. Thank you for reminding me that in general, im able to deal with things. I can and will deal with this too.
Daphne. Youve taught me so much about MS life and challenges. Your posts always leave me awe inspired. (snow shoes?!:D). You are absoutely right that communication is key with my doctors...unfortunately, this caused me quite a bit of stress. My MS doc and my Gyn do NOT agree on this whole thing....my MS doc is a huge proponent of birth control, hormones, etc..whereas my GYN is a huge proponent of me not having a stroke, blood clot or other problem. He is also been my doc for 12 years, where Ive only had an MS doc for 1.5. That being said, my GYN is also very aware of my history with cysts, problems and general health. My MS doc, being the specialist he is, is convinced that MS is the only disease in the world. I have had them communicate, even been in the room while one has spoken to the other. The bottom line was that I have to look at my overall health and worry about what is going on which cant be seen. I have to trust that the ultrasounds and tests Ive had by my GYN are Just as important as the MRIs my MS doc gives me. I kind of had to make up my own mind on what way to handle this....until last week. Things changed, another cyst erupted and more problems arose...at this point, surgery is necessary. However, your point about alternative ways to have surgery are now making me think hard.
I will be discussing things further with my GYN and the anesthesiologist this week PRIOR to being put to sleep! Thank you for once again giving me some serious food for thought. Im sorry the experience you had was so horrible. I can only guess that since youve been doing so well for quite some time now, the back issues have been resolved and the MS appears to be very stable at this time. Hugs to you.
April Again, thank you for thinking of me as strong. Usually, I would say yes I am...these days, Im feeling just alittle overwhelmed and freaked out. But, the prayers you offer are gratefully accepted and I will keep you all posted. As soon as I can get online, Ill drop you a line to let you know my status...I loved your comment about the husband and job will wait. They will, wont they? I need to believe that more than anything else. I dont have the most supportive husband in the world, and right now, he is testing my patience and more...but, youre absolutely right. I have to put me first and he will have to prove his stuff this time around. Every now and then he comes thru and reminds me why I love him....cross your fingers this is one of those times.
Thanks to all of you. Hope you all have wonderful weekends and healthy weeks ahead. I am so grateful for your friendship. please know that.
Nikki
duttin
01-05-2008, 10:22 PM
Nikki,
Once Again Responding Late, Vision Has Been Very Poor.
I Wish I Could Tell Ya Everything Will Fine,but I Sincerly Beleive In The Power Of Positive Thinking.
You Have Great Trust In Your Gyn So Listen To Your Instincts And Gut Feeling.you Need The Surgery And In Your Last Post You Validated Why.
Theres A Very Good Chance That Your Ms Will Not Flair Up,i Have Had Anastesia Twice This Year And Have Done Quite Well With It.
If I Was There I'd Hold Your Hand And Help You Through This.
My Ms Was First Dx'd After My First Back Surgery In 1998,but The Surgery Was Tramatic .
I Can Understand Your Reasoning Of Being Scared As My Back Surgeon Wanted My 3rd Back Scheduled In Febuary.but I Won't Number One The Surgery Has Many Risk Factors,been On Solu-medrol,and I'd Prefer To Get Out Of This Attack,plus It Would Be Easier When The Kids Are Out Of School.
I Am Sending You Prayers,hugs,happy Thoughts And Many More Prayers.
Here's To Our Better Health For 2008,
T
Once Again Responding Late, Vision Has Been Very Poor.
I Wish I Could Tell Ya Everything Will Fine,but I Sincerly Beleive In The Power Of Positive Thinking.
You Have Great Trust In Your Gyn So Listen To Your Instincts And Gut Feeling.you Need The Surgery And In Your Last Post You Validated Why.
Theres A Very Good Chance That Your Ms Will Not Flair Up,i Have Had Anastesia Twice This Year And Have Done Quite Well With It.
If I Was There I'd Hold Your Hand And Help You Through This.
My Ms Was First Dx'd After My First Back Surgery In 1998,but The Surgery Was Tramatic .
I Can Understand Your Reasoning Of Being Scared As My Back Surgeon Wanted My 3rd Back Scheduled In Febuary.but I Won't Number One The Surgery Has Many Risk Factors,been On Solu-medrol,and I'd Prefer To Get Out Of This Attack,plus It Would Be Easier When The Kids Are Out Of School.
I Am Sending You Prayers,hugs,happy Thoughts And Many More Prayers.
Here's To Our Better Health For 2008,
T
MSNik
01-05-2008, 11:25 PM
Toni my dear friend and longtime supporter-
If you could be here to hold my hand, Id gladly allow you to! In fact, Id much rather you were here then hubby!! Thank you for your words...as always, they make me feel better.
I know youve been thru the mill with surgeries, and you do know what im going thru and how terrified I am. Its good to hear that anesthesia is not a "given" which will cause a flair up. That, is the last thing I need right now.
Yes "To our better health in 2008" All of us! Ill second those words as well.
I want you to wait on the surgery for yourself as well. Hopefully your kids will be there for you- I know your son has been a huge support to you during the IVs....and you do have to wait alittle while for the solumedrol to get out of your system. They questioned that with me at pre-op the other day. They said they ususally want at least 90 days post solumedrol if they can avoid doing surgery sooner, they will... meanwhile, whats the latest on the eyes? Is it getting any easier for you? Is there alot of pain at this time? I pray for you daily my friend. You deserve more. You give SO much. Thank you for sharing what you give, with me.
hugs and prayers.
Nikki
If you could be here to hold my hand, Id gladly allow you to! In fact, Id much rather you were here then hubby!! Thank you for your words...as always, they make me feel better.
I know youve been thru the mill with surgeries, and you do know what im going thru and how terrified I am. Its good to hear that anesthesia is not a "given" which will cause a flair up. That, is the last thing I need right now.
Yes "To our better health in 2008" All of us! Ill second those words as well.
I want you to wait on the surgery for yourself as well. Hopefully your kids will be there for you- I know your son has been a huge support to you during the IVs....and you do have to wait alittle while for the solumedrol to get out of your system. They questioned that with me at pre-op the other day. They said they ususally want at least 90 days post solumedrol if they can avoid doing surgery sooner, they will... meanwhile, whats the latest on the eyes? Is it getting any easier for you? Is there alot of pain at this time? I pray for you daily my friend. You deserve more. You give SO much. Thank you for sharing what you give, with me.
hugs and prayers.
Nikki
duttin
01-06-2008, 05:53 PM
Nikki,
Your Concerns And Being Scared Is Very Normal,how Long Will This Proceedure Take?
I Won't Have Surgery Until I'm Steroid Free For 6 Months,i Have A Pin Size Hole In The Spine That Is Causing Fluid To Fill The Thecal Sack At L4-l5 And I Won't Risk It After All The Steroids I've Been On This Past Year.
The Eyes Are Getting Better,it's Been A Very Slow Process.they Still Get Painful On Movement,the Vision Is Getting Better As Long As I Don't Overheat Myself Or Strain My Eyes.
I Have 7 New Books And I Can't Read Them.
Trying To Finish Real Estate Appraisal Course To Get My License,my Son Is Gonna Record Each Chapter,so I Can Try To Get This Next Book Done.
Your Surgery Will Go Fine,remain Positive,your Hubby Will Be Supportive,it Seems Like The Only Time They Really Are.at Least In My Case.
Try Not To Worry,i Know Thats Easier Said Then Done,the Added Worry Isn't Good For Your Ms And Worrying Don't Get Any Of Us Anywhere.
If It Cheers You Up Its To Be 65 Here Tomorrow Which Means This Warm Weather Is Coming Your Way.
Sending Ya Sun Shiney Days Along With Hugs And Prayers.
T
Your Concerns And Being Scared Is Very Normal,how Long Will This Proceedure Take?
I Won't Have Surgery Until I'm Steroid Free For 6 Months,i Have A Pin Size Hole In The Spine That Is Causing Fluid To Fill The Thecal Sack At L4-l5 And I Won't Risk It After All The Steroids I've Been On This Past Year.
The Eyes Are Getting Better,it's Been A Very Slow Process.they Still Get Painful On Movement,the Vision Is Getting Better As Long As I Don't Overheat Myself Or Strain My Eyes.
I Have 7 New Books And I Can't Read Them.
Trying To Finish Real Estate Appraisal Course To Get My License,my Son Is Gonna Record Each Chapter,so I Can Try To Get This Next Book Done.
Your Surgery Will Go Fine,remain Positive,your Hubby Will Be Supportive,it Seems Like The Only Time They Really Are.at Least In My Case.
Try Not To Worry,i Know Thats Easier Said Then Done,the Added Worry Isn't Good For Your Ms And Worrying Don't Get Any Of Us Anywhere.
If It Cheers You Up Its To Be 65 Here Tomorrow Which Means This Warm Weather Is Coming Your Way.
Sending Ya Sun Shiney Days Along With Hugs And Prayers.
T
MSNik
01-06-2008, 07:54 PM
Hi T. THe surgery is going to last from 1.5 hours to 4 hours, depending on what they need to do. Im starting to calm down a bit about the whole thing...of course, its only Sunday, check me out on Wed night! I still dont even know what time the surgery is, they said they would call on wed...
I am going to work M-T-W with the hopes of keeping busy and keeping my mind off of this...so, it should help.
I cant belive you are in for more back surgery. How did they even discover the hole and the leak? I agree you should wait the full 6 months for the surgery, no sense at all in tempting additional problems.
Im praying the husband comes thru. Hes been off work for two weeks so far, and so far my house is clean. I kid you not, hes on a rampage, donig things I never do, like baseboards, heavy moving of furniture...even scrubbed the walls in the shower up high, where I happen to never get to! Hes been great about all that. Hes taking up laundry tomororw. But, I wish he would go back to work...this is costing us a fortune and its not easy on me, knowing that each day Im out, I am not getting paid either. My stinking boss has put my benefits at the 3 months mark, even though Ive technically been there over a year, in his eyes, 37 hours a week isnt full time. That, started Jan 1.
I also have another job interview the tuesday after surgery, if I can keep it. I really hope to. THe job is also sales, not medical, but pharma. It wont be an easy job, but I think the company, a new pharma company which specializes in women's health (mostly OB-GyN and GI health) has alot of potential and I think I could be successful doing it with them..I also think they are large enough to know what they are doing and not make up the rules as they go along like my present company. It might be stresssful in the beginning, but I think a few months down the road I could really enjoy not working for the jerk I work for now. The downside is Id lose the company car, and that is really worth ALOT of money to me....
But, Ill keep you posted. THanks for checking in...continued feel good days with your eyes, ok? Good luck on the realtors license. That sounds like something you would excel at!
and yeah, the weather is supposed to be mid 50s tomrororw. Ill take it!
Hugs,
N
I am going to work M-T-W with the hopes of keeping busy and keeping my mind off of this...so, it should help.
I cant belive you are in for more back surgery. How did they even discover the hole and the leak? I agree you should wait the full 6 months for the surgery, no sense at all in tempting additional problems.
Im praying the husband comes thru. Hes been off work for two weeks so far, and so far my house is clean. I kid you not, hes on a rampage, donig things I never do, like baseboards, heavy moving of furniture...even scrubbed the walls in the shower up high, where I happen to never get to! Hes been great about all that. Hes taking up laundry tomororw. But, I wish he would go back to work...this is costing us a fortune and its not easy on me, knowing that each day Im out, I am not getting paid either. My stinking boss has put my benefits at the 3 months mark, even though Ive technically been there over a year, in his eyes, 37 hours a week isnt full time. That, started Jan 1.
I also have another job interview the tuesday after surgery, if I can keep it. I really hope to. THe job is also sales, not medical, but pharma. It wont be an easy job, but I think the company, a new pharma company which specializes in women's health (mostly OB-GyN and GI health) has alot of potential and I think I could be successful doing it with them..I also think they are large enough to know what they are doing and not make up the rules as they go along like my present company. It might be stresssful in the beginning, but I think a few months down the road I could really enjoy not working for the jerk I work for now. The downside is Id lose the company car, and that is really worth ALOT of money to me....
But, Ill keep you posted. THanks for checking in...continued feel good days with your eyes, ok? Good luck on the realtors license. That sounds like something you would excel at!
and yeah, the weather is supposed to be mid 50s tomrororw. Ill take it!
Hugs,
N
duttin
01-06-2008, 09:18 PM
Nikki,
The Back Surgery I Told My Neuro No Three Times And He Said I Had No Choice,they Found The Spinal Leak Through A Lumbar Mri As My Neuro Was Really Concerned With The Absent Reflexes On The Right.
It Has To Be Done Sooner Or Later,preferrably Later As I'm In No Rush.
I'd Like To Have A Long Talk With Your Boss,does He Realize How Much Work You Do From Home.many Facilities Do Consider 35 Hours Or More Full Time.
I Hope You Can Make Your Inteveiw,but Don't Push Yourself.it's Good That Hubby Has Been Helping You Out At Home,but It Don't Pay The Bills , So You Get The Added Stress.but Don't Stress Over The Bills And The Time You Need Off To Recover.
Take Sometime To Relax ,but Keep In Mind That This Surgery Is A Neccessity And Not Elective.
When You Get A New Job,your Boss Will Truelly Realize What A Gem And Dedicated You Are,you'd Be An Asset To Any Company.
Stay Positive And I'll Give My Eyes A Rest When They Need It
Hugs And Prayers
T
The Back Surgery I Told My Neuro No Three Times And He Said I Had No Choice,they Found The Spinal Leak Through A Lumbar Mri As My Neuro Was Really Concerned With The Absent Reflexes On The Right.
It Has To Be Done Sooner Or Later,preferrably Later As I'm In No Rush.
I'd Like To Have A Long Talk With Your Boss,does He Realize How Much Work You Do From Home.many Facilities Do Consider 35 Hours Or More Full Time.
I Hope You Can Make Your Inteveiw,but Don't Push Yourself.it's Good That Hubby Has Been Helping You Out At Home,but It Don't Pay The Bills , So You Get The Added Stress.but Don't Stress Over The Bills And The Time You Need Off To Recover.
Take Sometime To Relax ,but Keep In Mind That This Surgery Is A Neccessity And Not Elective.
When You Get A New Job,your Boss Will Truelly Realize What A Gem And Dedicated You Are,you'd Be An Asset To Any Company.
Stay Positive And I'll Give My Eyes A Rest When They Need It
Hugs And Prayers
T
april1848
01-07-2008, 07:57 PM
I had to post. Duttin, your courage and calm amaze me. You too, Nikki. I can't imagine having to think about surgery with all the other stuff I'm dealing with right now.
I'm glad your husband's been helping you out, Nikki. That's great. But I understand your wanting him to go back to work. My husband works, but he has zero benefits--self-employed tattoo artist. Every day I think what if I can't work? How will I get treatment? Maybe I can get disability and Medicare, but the husband can't. All of the planning for the future, the finances, along with the household, rests on my shoulders. He's been so great about certain things--injections, trying to find me a "cool" cane. But I need some help with the serious stuff, like insurance, retirement, and all of that.
Wow, I'm really, really angry with him. That felt good. But it's comforting to know that not everybody's husband is perfection.
Duttin-good luck with the real estate! We live in the same state, so maybe someday you can sell me my first (owned) house! I'll add you to my prayer list.
It was a beautiful day today, wasn't it?
I'm glad your husband's been helping you out, Nikki. That's great. But I understand your wanting him to go back to work. My husband works, but he has zero benefits--self-employed tattoo artist. Every day I think what if I can't work? How will I get treatment? Maybe I can get disability and Medicare, but the husband can't. All of the planning for the future, the finances, along with the household, rests on my shoulders. He's been so great about certain things--injections, trying to find me a "cool" cane. But I need some help with the serious stuff, like insurance, retirement, and all of that.
Wow, I'm really, really angry with him. That felt good. But it's comforting to know that not everybody's husband is perfection.
Duttin-good luck with the real estate! We live in the same state, so maybe someday you can sell me my first (owned) house! I'll add you to my prayer list.
It was a beautiful day today, wasn't it?
Bearygood
01-08-2008, 09:16 PM
Nikki, good luck with your surgery! Please try not to worry. I'm going with:
It will be FINE. ;)
It will be FINE. ;)
MSNik
01-08-2008, 10:02 PM
Thanks Bearygood!!! Appreciate you thinking of me!
N
N
MSNik
01-09-2008, 04:55 PM
Hi everyone. Just wanted to let you know the surgery is at 8 am. I have to be at the registration by 6:30 in the morning! Im actually grateful, as I dont know that I could have handled sitting around until noon to start this...
will post when I can and let you know how it all turns out. I thank each and everyone of you for your wishes and prayers!
Nikki
will post when I can and let you know how it all turns out. I thank each and everyone of you for your wishes and prayers!
Nikki
april1848
01-09-2008, 07:11 PM
I'll be sending happy thoughts your way tomorrow morning!
erika74
01-10-2008, 01:12 AM
Nikki Prayers being said for you. Erika
glamour girl
01-10-2008, 04:10 AM
Hey there Nikki,
Just found your post.. All the best for your surgery. Hope everything goes well wishing you a Speedy recovery hon.
Let your hubby & kids fuss over you for a change. Time to take care of you.
Hugs & Prayers xx
Just found your post.. All the best for your surgery. Hope everything goes well wishing you a Speedy recovery hon.
Let your hubby & kids fuss over you for a change. Time to take care of you.
Hugs & Prayers xx
Avenue Q
01-10-2008, 02:13 PM
Nikki, wishing you the very best this morning .:angel:
Tasia W
01-10-2008, 06:03 PM
Hi Nikki,
its 2pm here, and I have been at work thinking of you all day. Hope you are recovering well and not in pain:( Just wanted you to know we are all thinking of you.
T
its 2pm here, and I have been at work thinking of you all day. Hope you are recovering well and not in pain:( Just wanted you to know we are all thinking of you.
T