Dr. Carlos David at Lahey Clinic in Burlington MA. Good Luck!
I'm scheduled for 6/28 with Dr. Heffez here in Wisconsin. Where are you having yours done at?
YES, I am feeling the same way. My surgery is scheduled for 6/30 what day are you scheduled for? It's all I think about. I feel like nobody understands. I'm sleeping less and less as the date gets closer (not that I every slept good anyway). I am trying to do EVERYTHING I can while I can. I agree, just because people cannot see our pain doesn't mean there isn't any! It really makes me crazy that not even my DH gets it. He says he does but her really doesn't.
Everyone says that I look great and don't look like I have anything wrong with me. I am the type of person that likes to joke around and likes to have fun so I try not to let people besides my DH see how I really feel.
Yeah, well some of us just keep plugging along because what else can we do. They don't see me cry some morning when it kills me to get up.
I do have to say that some days I am pretty good. BUT on the days where I am in so much pain and dizzy and my arms and legs feel like pin cushions... and all the other stupid feelings I feel it makes me forget about the good days.
I just want to get it over with at this point. I am cleaning my house and working in my yard like crazy! Still going to work everyday but really don't want to.
No, nobody understands this crazy disease unless they have it. I'm just hoping most of the symptoms go away after I heal. Looking forward to visiting my son in Florida the week before surgery and just spending the rest of the summer at home after surgery.
Thank GOD for all of you because you make me feel like I'm NOT CRAZY!
xo Kim in NH
Just wanted to say I understand...I am just like you..and I have a high tolerance (or just plainly too strong willed) and I don't let things stop me. No matter what...even if it hurts me more. This strength is such a good thing to have but it can be bad too..
In my case, I had such a bad gait that my DH could not deny the fact that there was something seriously wrong...but even then, he didn't understand that there were things he could have done to make life easier...b/c I still did it all...even if I had to hobble along.
After surgery, I am having the same problem, my gait is a lot better and I am doing all the things I did before...but it's different. I am everyday, constantly, pushing through the pain. I too feel like I have done some of this to myself b/c I don't just drop into bed and say enough is enough, I can't do it anymore. But I can't do that...b/c I'm a mom and a wife and they need things from me. I just wish sometimes they knew how much of a struggle it is now to do the things I used to do before.
I have thought many times of writing a real heart to heart letter and getting my DH and family to read it..I can express myself so much easier that way. Maybe that is something that will work for you?
The problem is, that this is for the most part an invisible condition so we have to somehow figure out how to break through the wall to get our families to understand.
You don't want to give up that strength though..because that is what got me through the surgery and recovery...and it's what never let me stop pushing until I got answers..
Take care...I hope you break down that wall soon, I really do.
Carolyn
"Before you judge me walk a mile in my shoes".
No one can understand your pain and should not be so thoughtless, they should at least try to be supportive.
If you fracture your arm you are in a cast and it is obvious but with CM it is not so obvious.
Maybe you could print out a list of symptoms and leave it around for him to find or get someone from your NS office to chat with him or ask your family doctor to explain things to him.......
Ray
Honey, i can SO identify with you! My husband didnt get it either but about two weeks before surgery it finally started to sink in and if you saw any of the posts from when i was in surgery and icu, he was intent on keeping everyone up to date and so worried about me! Just dont give up and pray really hard that God will open your husband's eyes to what you are dealing with! Oh, and you do want him at the hospital so he can see what all you go through and i think talking to the other families who are going through the same thing helped my husband. As for the emotional stuff ... You are not alone in that either! I've been an emotional wreck for over a year now, but the two weeks prior to surgery you couldn't hardly speak to me without me getting upset. Two days before surgery i got a complete peace over me and didnt get upset even the mornin of until right when they took me to the OR, but i think thats just natural for anybody. Just wanted you to know you are not alone! Blessings ~ Shannon
No worries...yrs ago I did the same I pushed so much that I finally couldn't go nemore...that is when the crying started at work !!...I was mortified....I felt like I would go crazy if I kept it up...DH didn't understand then...but he does now...sometimes he is over protective and doesn't allow me to try some things....
But, listen to ur body if it says slow down..then slow down if it says stop then by all means stop...I stopped wearing makeup so people could see I felt like I looked....u don't have to complain, u just have to stop....
Ne time Sheila..that is y we r here : )
"selma"
Thanks for making me feel like I am normal and not "crazy" for having brain surgery. My husband went to ONE appt with me and that's it. Even when i traveled to TCI, I went alone. I'm at the point where I don't even want him at the hospital with me when I have the surgery because he doesn't understand not do I feel like he wants to. He doesn't understand that when I get worn out, I'm down for the count and I do'nt make much sense when talking and I start talking jibberish and just make no sense at all. I know he loves and cares for me but just doesn't understand what I am going thru since he gets sick maybe once a year and even then he's still up and at 'em.
I sure hope he has something hit him in the head real soon and realize that this is serious and I am not really fine right now. I sometimes wonder if I should let them see how I really feel instead of pushing thru the pain and setbacks that I encounter on a daily basis. But then again who wants to be around someone who is always complaining of pain and waht they can't do instead of what thye can do. Which for me is quite a bit since I do have a high tolerance for pain. Come to think of it now, no wonder why no one really gets me...they never see me in real pain because I don't show it. I always make the best of my situation and day at hand.
Again, thanks for listening...lol.
Sheila
Oh my goodness gracious YES !!!...what u r going thru is normal..I too would not take pain meds either bcuz it didn't help and made me even more fuzzy headed....I cried at dumb commercials on TV...yup...BTDT....I still am emotional...last 4 yrs I can cry at the silliest things.....and I am always surprised by it too.
Did ur DH go to ur Dr appointments with u?....does he not understand at all?...I know it is hard to get them to understand when there r plenty of drs that don't....I pray he finds an understanding when he sees what u go thru in the hospital. I was lucky in that when I finally got my dx, DH did research too, and understood many of my complaints over the last 30 yrs...it all fit for him too.I know u all r not as lucky to have an understanding spouse, I can only suggest u get them to go to each and every appointment to hear what the drs say.
Praying ur DH has an epiphany prior to ur surgery.
Hang in there : )
"selma"