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colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 8/24/2006 9:44 AM (GMT -6)   
Hi everyone...I had my Evoke testing on Tuesday and my Doctor also recieved the report from my Spinal Tap from last Thursday. I have a definete dx of MS. I knew thats the way it was going to come back,just a feeling inside me...but it certainly does not make the words any easier to hear "You have a 100% positive dx of Multiple Sclerosis"...I have to admit I have had a happy face on forever it seems...trying to make things easier for those around me. But that happy face is becoming very hard to keep on...especially when I am so scared! Like you all can relate,I dont know what my future holds,what will happen,etc. The stress of this all hasnt done any good for My Ulcerative Colitis...which is beginning to flare again...and with my daughter beginning Kindergarten on Monday,I worry about her well being. She knows that something has been going on with her Mommy. She told my Mother the other day "Grammy,did you know that My Momma might has another illness". I talked with Emily and explained that "YES,something was going on,and the doctors were trying to figure it out..once they figure it out then I will talk to you about it all". I just recieved all this information yesterday after I called the doctors office(for like the millionth time) and just said "tell me,yes or no"...I didnt want to wait for my appt on september 26th. She said "yes" and that she would have the doctor call me and talk with me. He did,and told me my results over the telephone. He called me again this morning and said he wanted to bump my appt to this tuesday...at that time he wants to talk to me more about MS and was going to give me video's to watch at home to decide what injection would work for me. So,this is all moving along rather fast...but I know that is a good thing. I think talking to my little girl will be harder then anything I have done in awhile. She was only one when I was dx with UC(the age my son is now)...so she knew NOTHING else,other then Mommy has UC...but with this all happening now I have seen a change in her. She is scared alot. She thinks everything will hurt her,bees,splinters,water in her ears...little things,but she makes them really BIG. I dont discuss my health or pain in front of my children,however I dont hide it from them either. I'm just so worried for her little mind to understand what is happening...and that she WILL be ok,and that Mommy WILL be ok. I am going to get my own emotions together,then I will sit down with her and discuss this....if any of you have small children...please advice me on where to begin,any advice will be very helpful. Thanks!
 
~Nichole~
 
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/24/2006 2:12 PM (GMT -6)   

Nicole, I'm so sorry you've been definitely diagnosed!

Is there a local chapter of the National MS Society in your area? You can check in the phone book (under something like "social service agencies") or go to their web site: www.nmss.org and see. They have lots of pamphlets and booklets you can use to help explain this to your children..and to others in your family.  I haven't looked at these publications in a long time, but they used to be really clear and simple, and there was even some books like coloring books for kids.

MS is hard enough to explain to adults, much less kids, as it is so variable in each person.  And, unlike some illnesses, it's not a matter of: "take these meds and you'll be fine in 6 months".  The picture is so much more hopeful now, though, with all the meds available.  After you've seen the videos and talked with your doctor, don't hesitate to come back and ask about the meds. I think there are folks on all of them here, and we can tell you about our experiences with whichever one you're considering.

Sounds like your kids are young.  I don't have kids, but have counselled folks in similar situations. Best advice I can give is this: you know your child better than anyone else. And you know how much information your child is able to receive and process at any one time.  She sounds young. Young children *most of all* need assurances that they're loved, that mommies illnesses aren't their fault, that they haven't done anything to make mommy sick (and even if they're bad, sometimes, that won't make mommy sick!), and that mommy will do everything she can to make sure she will be around for a long long time to take care of them.

They don't need details about what MS will or might do, what you need to do to in terms of shots, or medicines (I was talking to one person who was telling me her child was scared every time she injected her Betaseron. I asked, "...so why are you doing it in front of the child, anyway??  She doesn't need to be in the room while you do that!")  What they NEED is reassurances about your love, and your commitment to take care of them, no matter what.

And then, over time, as they get older, and you get more confident, you can offer more information. Or be watchful for their questions, and be ready to answer them. 

Sure, there will be times when they'll be upset because they want you to do stuff and you won't be able to.  They'll adjust..as will you. And you'll figure out how to be able to do the IMPORTANT stuff, and let other stuff go.

In the meantime, you need to take care of yourself.  Do something nice for yourself this afternoon, if it's only a cup of good tea and a few chapters of your favorite book.  You'll get past this, in time, and be able to move forward.  When you can do that, then it'll be time enough to talk with your kids.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 8/24/2006 2:52 PM (GMT -6)   
Hi Nicole,

I'm glad that you finally got your dx, at least now you know what you are dealing with for sure. It is scary to hear those words, even if it's something youre expecting, reality kinda sets in and all those thoughts start racing! I can tell you that despite the dx and all the thoughts you can adapt to whatever may or may not come. It's easier said than done but try not to worry about it too much, many people here who have had MS for a while will tell you that despite having it they still lead very happy productive lives :-)

We have five children, and although they were a bit older at dx than yours, I believe the youngest was 9 at the time, talking to them at their level of comprehension really does help. One thing we did that seemed to make a difference in their understanding was explaining to them that daddy may not feel too well sometimes and we may need their help with things. It seemed to make them feel involved. I'm not sure if this will work for your daughter but just a suggestion you can think about.

Let us know how things go, and if we can be of any help to you please let us know.

Kimber
 
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colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 8/24/2006 3:33 PM (GMT -6)   
Thank you both for your kind words of encouragement and advice with my kids. With Ryan(my son) I think it will be easy...he doesnt need an explanation,he is only 15 monthes old...so he will know nothing else. Emily will be five in just a couple of weeks and she is a pistol...she needs to know everything...how something works,why,when,etc,etc...I really like the idea of books/pamplets for children...I think this will make the talk much easier for me...sometimes I tend to explain TOO much and she doesnt need that. I am going to check into that website and go from there...I'm sure come Tuesday I will have a TON of questions..
 
~Nichole~
 
 
 

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