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
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RRMS- dx 05
Rebif 2005-2011
LDN Sept. 2011
"Every New Beginning Comes From Some Other Beginning's End"
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
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!. 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!
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...
And remember that we're all here if you need us!!
cindy
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.
. My neuro. had told me he could not predict what to expect and had seen some have issues with relapse but most did not.
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