You know..just having one of those days were you hate this disease. Well everyday I do, but Ive learned to cope it with for the most part..

But last night i stayed up pretty late and have been on the go all day long, now just getting a chance to rest. I also went for a 25 minute run today which is going to kick my ***....I got back and had to sit down for my legs could hold me up any longer. When am i going to learn?

My breathing isnt very good, yet better than sometimes. My eye is really bad, and i feel like im going to pass out.

It just kills me, because its my senior year, all my friends are out hanging out, and I cant. I used to be so active. Captain of my soccer team, playing on one of the best club teams, etc. It just kills me to see myself like this, and osmetimes i get depressed about it, and for what? i know its not just going to go away.

I even had my chest cracked open for it, and its still here.

Thanks for letting me vent..

When I get really really down like that I do something completely and utterly cheesy....I go out and perform a random act of kindness...I once put some gas in someone's car who I noticed was paying with change...Bought a dessert for a kid at a restaurant...I don't know why it works, but it puts things right back into perpective...you will also find you breathe a little easier. I hope that helps a little! SMILE!! Hey, and I have the same scar on my chest...Makes me feel like a superhero!!

TYSON

You remind me of my youngest son and sometimes I just want to hug you.

First off, have you spoken to your Dr about the high amount of pred? That has me worried. Second, wear that scar as a badge of honor! You earned it!

Now I really like Chefginny's idea, I never put the two together like she did but she is right, helping someone else will always make you feel better!

I am glad you are running again as I know how important that is to you, I have been doing a lot of driving to Ashville the past couple of days {hubby in hosp again} and I tell you it has worn my muscles out, I had to sit in my car for 10 min after I got home so that I had the strength to carry things in from the car.

We ALL know how you feel and we ALL have moments of depression or saddness but we ALL have each other to turn to.

Feel better young man and try to enjoy your last year of high school, remember your friends will be your friends even if you can't "party" as much as them and well I will tell you what I told my son when he said he wished he had gone to more parties....

Parties are just a place for other kids to talk trash about other kids and thats how rumors start and people get bad reputations.

I'm so sorry you're having such a hard time. I have days like that too. Sometimes I don't know if want to cry or break something or both. And I've got the same scar . . . I don't have any great advice except to say just keep doing what you're doing to help yourself and know that people here know what it's like and we support you. And let yourself have your feelings. They are legitimate and a reaction to something that is truly difficult. Take care.

ChefGinny- That is a really good idea, yet sometimes i dont even have the energy to do so, which is very sad. Yet I go to a school that is based off community service so much gets done through my means.
-Thanks

Joanmarie- Thanks I dont get alot of support through this as my aunt is so busy w her four kids, and my uncle always working. (mom and dad both alcoholics that live in a different state) So its nice to have someone here for me!
I noticed that your from NC! Where? Im from the research triangle, and being close to UNC has saved my life, i dont know if its worth the time coming here for a doctor if your MG gets out of hand but UNC is amazing.

I have not yet talked to him about the high dose of pred. But I know its not working to the full extent yet, or hardly atall. I think it should be helping more, yet I will call hopefully tomorrow.- I know the scar is a battle wound, that I made it through.

Im glad I can connect w you guys because I dont have anyone here that truely understand how it feels to be under the influence of this disease. I know the partying thing isnt a big deal to me. Its more the sports. I was the jock, and still aspire to be..but doesnt work.

Thanks Joan

Cowgirlup- Thanks for your uplifting message, I had sort of lost connection with the feelings for a moment. I know its okay to feel this way, yet I need to get a better grasp on it.

Thanks everyone.

Hi Tyson,

I'm so glad you can come here and vent, its good.

Yes its more than frustrating. I hate that I have to plan ahead for something as simple as New Years eve. I will be spending it home sleeping, because I want to go out to my big sisters place for the weekend, as my big brother will be there with his family. We will be spending the nights watching stars, talking etc etc. So now I have to rest for 2 days to have the energy to drive 30km!!!!!!!!! grr yep its frustrating.
And again, Iam glad you can come here to vent, (I'm glad I can come here and vent, and cry!!)
take care
Kate

Could I leave hugs for everybody in this beautiful forum ?? x 1,000,000

I felt attracted to this topic as I was going to post one very similar with the same title !

Thinking about you

Tyson,

I am more worried that you may be on to much pred, remember to much medication has bad effects on MG.

As for where I live, I live in the western part of the state, near App State {ASU} heck we still have a bout 4 inches of snow in our yard from that storm that came through on the 18th..LOL

As for your family support.. WE are now your family as well so remember you can always turn to us.

Redtail- I know what you mean, family takes alot of energy out, sometimes its not even worth the drive:P. But Sometimes it is. It must be really hard, and im I hope your drive goes well. I also know as i think most of us do, what you mean about the having to rest up for a few days before doing something extravagent. I HATEHATEHATE that. so much. But i do it well, i think...

Please get some rest before your trip, we dont want any crisis..


Joan- I am calling my doctor today to talk to him about it, yet hes on lunch break right now.

Oh yeah, I was in maine when that storm came through, impressive! But, thanks for the new family member Im feeling a little better today, yet need to rest alot..
Hope your feeling well.


Hope everyone is feeling as good as their MG will allow them to.

Thanks Tyson, I'm resting as we speak.
My family just happen to be amazing people. Everyday I count my blessings as to how they deal with my mg. My sister is my best friend, and looks after me, takes me shopping to drs appointments all the time,without ever complaining. I have a wonderful sister in law, who when I was first diagnosed often held me while I sobbed in her arms. Thats why I'm hanging out to go out to my big sisters, cos we all get on so well. I know how lucky Iam, and I am always telling my gorgeous family how much I appreciate them!!!
And Joanmarie is right, I consider this as my family here, I often tell you guys things I couldn't tell my biological family, they would worry to much, but you all understand.
Hope you all have a safe and untiring New Year. I'll be going to bed at my usual around 9!!!
take care
Kate