In a bad place..
 

My MG isnt bad right now, its not great, but im getting plex, which is making it feel better i assume. Yet, im feeling quite down about how my body is beginning to look. Im a 17 year old, please hear me out.

I want ot have nice 'abs' and a chest, and be able to lift weights, hell i even want to be able to go to the beach, but my doctor says no. Of course.

My stomach is looking disgusting to me. I know its just out of shape right now, but i want to be back to normal, as you all know how that feels, im sure.

But its annoying to me, that IM on my spring break, and cant hang out with my friends because i have to get my blood cleaned in the morning. Like, how many teenagers have to say that?


Im just having one of the pity days, where i hate my body, because of this lame disease, but it will pass...and not any too soon enough.

I have plex in 6 hours, so hopefully that will go well. Then an app. with my neuro.


I cant sleep, i just want to be normal. Again, as you all feel.

Hope you guys feel well.

Tyson, I can't sleep either but I'm a night owl. The Pred may be doing the insomnia thing on you.

I'm sorry you are having such a tough time. Give yourself a break - you have MG at age 17! That's a little bit much to ask of anyone. You're entitled to be grumpy or ticked or feel sorry for yourself from time to time. It's really an awful thing to happen to someone so young. Hell, it's hard at any age, this disease is so stupid.

I think that after a couple years of living with this disease and really understanding how it goes, you will be able to do some of the things you want. I honestly don't think you'll be able to do all of the things you want though. I guess you'll have to decide what things are the most important for you.

If you had friends who supported you in doing nothing, you could've gone to the beach, sat there and not talked much and kept cool and been okay. But I doubt that's how it would've gone. And that's the hard part - getting those around you to "get it" and support what you need to do to feel normal. Or rather support you to stay alive and out of a crisis.

My body isn't exactly how I'd like it to be either. I used to be "buff" like you. It sucks that I can't be in great shape like I used to. I do what I can with things like the "Body Blade" which I get more bang for my buck with. But I don't want to get into a crisis. I need to balance my life. And I got the two college degrees, was sort of wild, went on lots of road trips, etc. when I was young. You haven't even gotten out of high school. I'm sure it must be overwhelming.

Accepting getting sick may be the hardest thing ever. And all that goes with it. It will take time, so give yourself a chance to "grieve" and figure out what the new you will be like. And it may involve letting go of some friendships. I hate to say that but sometimes that's what it takes to live the life you want.

I have to tell you, being a "girl," that I don't look at guys for their abs. I want someone smart, kind, funny and who has tons of common sense. If they eat healthy and take care of themselves in other ways, that's good enough. And someone who is not a control freak like some of my former neuros! ;) I know YOU want to look good for you but healthy has to trump that right now.

I'm probably not helping, I'm sort of just shooting things out there. I hate having MG. I really friggin' hate it. It has put my life in the toilet. HOWEVER, I get to choose how I perceive my toilet. :cool: I decide if I'm having a good or bad day. That may sound awfully trite and simplistic to you but all we have control over is our perception of our life. And our perception of others.

I hope you can get to a place that makes you relatively happy. It might take a while, so go easy on yourself.

Annie

Tyson, you are in a spot where you do have some control over this issue. Learning about how your body processes food, and especially when you have to use Prednisone... can help control weight concerns.

Prednisone increases blood sugar, and dumps it right into your belly, as fat.

Following a metabolic syndrome targeting diet, will help that.
The Zone is one example (it balances low glycemic carbs with protein and good fats) . It is very useful for diabetics and those with insulin resistance. (which Prednisone creates)

Also sugar is very bad for your health in general. And while you have this extra time, here is a very good video from an Endocrinology clinic from UC medical school about why sugar is toxic to the body (specifically fructose).

This is a long video, but I suspect people who understand how their body is mishandling sugar, would stop drinking sugared sodas and other drinks:
http://neurotalk.psychcentral.com/thread116672.html

Since Mrs. D. was way more helpful than I was, I tried to think of something so that you could still work out. Those were very good suggestions she gave you, BTW. Diet changes are very helpful while on Pred.

You need to optimize the time you can spend working out. To do that, you need to think about timing, length of workout and kind of workout. The best time to work out is earlier in the day when you have more strength. Or after you have rested.

You are probably like most guys who see working out as the nonstop, do anything and everything workout. Maybe you should revamp how you see that. You can do as much with less if you do an easier, shorter workout a couple times a day. Although, you should probably only start with once a day to see how you do! ;) Maybe every other day.

This is going to sound almost painful to you, so I'm sorry about that. I have found three things to work for me with MG. One is a Total Gym. It's fluid, you can gain muscle strength and it does cardio to some degree. It costs money though, even the more commercial version. I love how it feels; it's like combining strength and dance almost. I used to dance.

Second is my recumbant bike. By isolating certain muscle groups on different days, I can keep from overdoing one or more of them. It's great for my legs and does give a good cardio/aerobic workout. You can add arm exercises while biking but with your odd heart rate thing going on, I wouldn't do too aerobics too much right now.

The third one will make you cringe: rubber bands. Those stretchy things with handles on them. Using them does not mean you are now a senior citizen! They are actually an easy way to gain strength in your arms. I don't know if you lift weights, but you should do less reps with MG (like 6 to 8 reps). And not so many sets of them, like only two or three. Sometimes I only do one.

Okay, so there is a 4th. I got the Body Blade a while ago. It is amazing how many muscle groups it works at one time. I wouldn't recommend it for you right now but it would make you feel like you have control over your body. It can literally strengthen muscles all over the body. Pretty amazing.

I know you are used to the "all out workout" but if you want to maintain your muscles and stay out of the ER, you need to think of working out differently.

Stay cool, with a fan blowing on you while doing anything. Stay hydrated, another way to keep your body cool. Have a snack and rest/nap afterwards. Everything you do you have to think about what it's doing to your MG. Pamper your MG.

And if you are still "feeling sorry" for yourself, go visit some quadrapalegic kids in a hospital. Put a scarf over your eyes and try to get around your world like people who are blind have to. Sometimes it actually does help to see how others, whom are worse off than you physically, get through their day. You have to get to that point where you accept your new reality and actually learn to embrace it and be okay with it.

:hug:
Annie