Oh you can TOTALLY LAUGH!! My husband and I were trying to have a baby before my most recent pain spell started (and didn't stop, which was 9 mo ago) and I always joke that instead of a baby I got TN! Go figure ;) OH I should have added "trying to get pregnant" to my list of things I had to give up! That was a pretty big one.
That's actually one of the reasons why I'm moving fwd with MVD. I'm 28, I'm over this. I'm having it done at the University of Utah Hospital (I live in Salt Lake City, so its just a few miles away) by Dr. Paul House, who is the predecessor to Dr. Ronald Apfelbaum who has been a big player in the MVD game for yrs and believes in having it done within the first 8 yrs of diagnoses. Anyhow, I feel confident that this is the best decision for me and I'm going to the best Dr. and hospital. Dr. House does MVD several times a month and has never had any complications. I'm just 2 days away and I'm ready to ROCK! Let's do this thing ... can't wait to share my experience with you! XOXO
D McGinnis said:
Jessica - whether you intended it or not, I got a good laugh out of your list as it reminded me of ME. Please let me know how your MVD goes. Where are you having it done?
Oh...and I forgot, I had to give up singing! This is something I have done all my life and with this, it hurts like heck! :(
cris said:
great conversation! I have given up on:
chewing gum, cold foods (ALL of them...bummer), crunchy foods (have to cut salads into tiny pieces to eat...looks weird), any pressure on my left side - constantly waking myself up at night because I still roll over on this side, thinking 'on the fly' (makes it difficult when a student asks me a question sometimes...), initiating plans with friends / family - used to be the one that everyone came to and depended on... ugg)
NOT given up:
on myself...through faith and a good upbringing, I know I am strong and will try to remember who I am and where I have come from and what I have overcome in the past. This kicks my butt some days, but not every day...thankful for that.
...and Jackie, I am with you! Not gonna give up on THAT!!! :D
Driving, watching the sunrise/sunset, watching TV, reading (the biggest one), going for walks in the cold or wind, being on the computer, basically lots of my independence. Too much eye pain. I went from being an independent, intelligent person to someone who looks like a blind person (big dark glasses) and has to have help to do things. The medicine (Lyrica) has made me incapable of putting sentences together or pronouncing words sometimes.
However - I did not lose my eyesight and have a great husband, and am retired!! I live in the house of my dreams in the place I've always wanted to me. I had the career I wanted. I have so much to be grateful for and pray to God all the time thanking him for my blessings.
Here's to us, the great people who face great adversity and keep our sanity and perspective (most of the time). I heard a great saying the other day - as long as I wake up above ground I'm OK. That says it all!
YES! I have ATN mostly too ... but mine is mostly just red. I loved red wine and the idea of it makes me sick now. I switched to Pinot Grigio and Prosecco. The prosecco bubbles are refreshing to me.
diane said:
I have atypical and a huge trigger for me is wine - does anyone else get a huge pain increase with a sip of wine? Doesn't make sense?!
Driving, watching the sunrise/sunset, watching TV, reading (the biggest one), going for walks in the cold or wind, being on the computer, basically lots of my independence. Too much eye pain. I went from being an independent, intelligent person to someone who looks like a blind person (big dark glasses) and has to have help to do things. The medicine (Lyrica) has made me incapable of putting sentences together or pronouncing words sometimes.
However - I did not lose my eyesight and have a great husband, and am retired!! I live in the house of my dreams in the place I've always wanted to me. I had the career I wanted. I have so much to be grateful for and pray to God all the time thanking him for my blessings.
Here's to us, the great people who face great adversity and keep our sanity and perspective (most of the time). I heard a great saying the other day - as long as I wake up above ground I'm OK. That says it all!
After reading everyone's comments (for the 10th time! and still laughing) - it occurred to me that Sunshine is also triggering my pain - in the eyes. I was out running errands over the weekend and when in direct sunlight, my eyes starting watering and burning and stinging. So, damn, do I have to give up sunshine now too!!!!!
After reading everyone's comments...laughed at some, felt sad at some, learned ALOT. Still new here. So, the weight gain and idiocy is due to the meds? That makes me feel a little better. Also, I'll be damned if I'm gonna give up chocolate and coffee. I, too, am single and I need something to look forward to! Glasses are a hug problem for me... I never thought of wearing them outside of my ears. Thanks to whoever mentioned that. I can look stupid at home - like the dog cares? After reading what all of you have given up, my heart goes out to you.
I appreciate all of the friends I've made in the last 24 hours and everything I've learned so far. So, I guess I've given up feeling alone and like a freak. Thank you!
Mary, a tip for you. even when your TN is so bad you cannot eat as you cannot open your mouth: gently slip small pieces of chocolate onto the tip of your tongue. And eat as early in the day as possible.
I am laughing so hard. I think the McDonald's comment made laugh the hardest!!
I had to give ICE CREAM too and I think about it all of the time!! That one was just not fair! I had to give up my job and the paycheck and my friends there and my brain that went with it, but I truly think ice cream was harder.
Like many of you "divas", I had to give up my pride. I put on a hat pulled down and a scarf wrapped around my face and go out and without fail, get made fun of. So I have learned to laugh at my appearance!!
And I just have these huge meltdowns for small reasons. I mean sudden hysterical crying in front of people I know, in public. You talk about losing pride!! Whew!! I have to laugh about that one.
Before I found the right meds, I GAVE UP SOBRIETY. Honestly, drinking killed the pain. Of course it produced profound changes in my social life. Because of the difficulty in eating and the resulting facial contortions, I gave up dining out with friends. One of the miserable dynamics of the ATN/TN disorder is the effects on social intercourse. People freak out when they see the facial gymnastics required of the simplest tasks. Several friends (nurses) and family members came through for me by doing their best to dine with me. Life is better now.
Fashionable glasses,well all glasses! Till i get my bonus and can afford some super light ones.Which could be months away. :-( Which explains why I saw a lamb on the sports center.(turned out to be a siameas cat!)I seem to go into a daze most of the time as i have trouble focusing after a while.
Can't always find the right word or peoples names.Sometimes have to discribe people instead.Ie Long hair,shouts a lot,****head=my boss!
Yehh, I don't really feel like kissing too much lately....
SF Bill said:
Before I found the right meds, I GAVE UP SOBRIETY. Honestly, drinking killed the pain. Of course it produced profound changes in my social life. Because of the difficulty in eating and the resulting facial contortions, I gave up dining out with friends. One of the miserable dynamics of the ATN/TN disorder is the effects on social intercourse. People freak out when they see the facial gymnastics required of the simplest tasks. Several friends (nurses) and family members came through for me by doing their best to dine with me. Life is better now.
I have only had this for 4 1/2 months but it has changed alot of things for me. I have given up all acidic foods like salsa, pineapple and Italian foods (anything made with tomatoes and also peppers). As they set my mouth on fire.
Having an entire hot meal--by the time I chew each bite carefully the rest on the plate turns cold. And eating anything with lots of firm parts that I have to push around my mouth with my tongue. Mushy soft food that I can chomp up and down and swallow. Figured out tiny bits of brownies can be managed!
Anyone had to give up sour foods and drinks? I cannot even stand to eat lemon cake!! For some reason, even a sweet sour blend sends me into pain. I cannot imagine drinking lemonade again!
That makes my teeth ache just reading it!! So, that's a yes..
D McGinnis said:
Anyone had to give up sour foods and drinks? I cannot even stand to eat lemon cake!! For some reason, even a sweet sour blend sends me into pain. I cannot imagine drinking lemonade again!