Well. I'm a little confused right now.

I've been skiing for the past week, without hardly any problems, just arm weakness and a few other things. Along w breathing when carrying my stuff around the mountain, but when skiing it was awesome. Or maybe it's catching up w me now.

While walking thru the airport I've gotten so I have to concentrate on breathing at some points and I'm very tired and very hot.

Why would this be happening now? Do u suggest I take a day off before going to school tomorrow?

Thx.

Hi Tyson!

As it stands now, you have experienced more in the last year with the up/down nature MG than many of us.

You are the best judge of what your body is telling you - and you have done a very good job of evaluating and balancing the pros and cons of your decisions over these last few months.

While I was not in favor of you skiing, I am really glad it worked out so well for you and delighted that you were able to have such fun with family and friends!

Sue

Tyson,

it seems that you and I have the same type of unpredictable, unstable truly "crazy" MG, where you can go from being near normal to near-crisis within minutes, hours and days. many times regardless of what you do.

I can fully understand your confusion. I don't know how familiar you are with "alice in wonderlad", but that has been the way I was feeling ever since I became ill.

I "changed" within days from a fairly normal physician mother and wife, who could get up in the morning, take the car, drive to work, be there as much as was needed, and come back at night etc. take the kids to their after school actrivites, do shopping, prepare dinner, go out with friends, take trips abroad etc. to someone who could not know any longer if something is near of far, heavy or light, and if she could do now what she was able to do five minutes ago. I could be talking to a colleague in the corridor and find myself collapsing in the middle of the sentence, struggling to breath. I could walk to the staff dining room, and not be able to go back. I could be at work in the morning, and in the ICU in the evening of the same day.

like you I was searching for someone to guide me in this "crazy" land I found myself in, and it took me a long time to understand that as confusing as it was, I was the best guide for myself. and many times those that were supposed to guide me, actually took me in very dangerous and useless detours that would lead no-where, and took a long time to get back from.

one of the things that was of tremendous help for me was my respirator. it gave me the true confidence I needed to do what I want, as I was no longer concerned of going into respiratory failure because I did too much.

the other was my wheelchair (as well as other similar aids), that made it possible for me to always get to where I want, even if it was a distance I was not able to walk. after all, no one in his right mind would walk from new york to philadelphia, but would use a device with wheels to get there (called a car), so for me it was the same, just for a shorter distance.

the idea I am trying to get through, is don't give up any of what you want to do, but find the way to do it, without risking yourself or becoming very ill for a long time.

and only you can eventually find what will work for you.

best,

alice

Tyson,

I am so happy you had a great time, but as you have learned by now sometimes when we do things the MG slaps us down after we are done.

I was really, really bad on Friday, really fought with my innerself about going to the hosp {decided not to} than on Saturday I was feeling so good that I went to Walmart with my husband, halfway through the store, I could hardly breath and almost went into panic mode, instead I sat and rested {which was very hard for me to have to do.. LOL}

Only you know what you can do. Maybe taking a day off from school is something you may need to do. Healthy people will say after a vacation, "I need a vacation to get over my vacation" So for us MGers it is even more true.

Rest young man and get your strength back, than go to school. That is what I would tell my own son.

Again, I have to say, I'm glad that you went and created some wonderful memories. It's important to live life, and enjoy it when your body allows you to do so.
You've been listening to your body, and I would encourage you to continue to do so, and continue to discuss these things with you neuro.
I'd probably tell my son to take a day off as well, but only you know your body.
My breathing tanks quickly, and it took me a long time to learn the signs. And yet, I still have times, when it will surprise me. So it's important to keep yourself balanced.
So happy all turned out well for you.
Much Love
Lizzie

Sue- Thanks, I dont know why, and im glad for it, but skiing didnt affect me at all! I did stay home today just to get anothers day rest. Yet my aunt is ridculing me for it, because of how much school ive missed this past year. And how is that my fault, and if i dont feel good, why should i go? I was also up half the night puking.


Alice- Im on the same page as you, i feel like we both have the uncontrolable beast. And it sucks, and im sorry you have to deal with it. Thank you very much for that message it really did come across as very powerful to me, for I now know that I am the best judge of myself, and what i can do. Yet there are some things i still have yet to learn.


Joan, Thanks It was an awesome time. Im sure me not feeling well has to do with the plane, + skiing+ everything.
Im sorry that you dont feel well, I wisih there was something i could do...(dont we all) Yet all i can do is tell you im here for support!

I will listen to my body, and did, as i stayed home today.

Lizzie- thanks. I will continue to do so for sure, my breathing is what scares me aswell..and i will learn to control it i hope..

Thanks again.



So, I thought, with having gone skiing, being at high elevations, etc, i would be okay to go for a little run this afternoon..I had been up for a while last night, puking and all and feeling tired from the plane right, etc. But i felt okay by 4, and decided to go for a run. So i did, and i stopped after 14 minutes (having to stop many times in between to catch my breath) Then at the end, i was very dizzy and way out of breath, and my lungs HURT, it hurt to breathe in, it hurt not to breath, it hurt, way more than it should have. So im thinking maybe its just because im out of shape..or was it the MG?

My aunt is mad, (whom i live with) Because of HOW MUCH SCHOOL IVE MISSED THIS YEAR. Really? Is that even something to say to me? She tries to compare her lymes disease to me, when its nothing in the same. I feel bad that she has it, yet dont compare your disease to mine in any manner. Ive been hospitalized 3 times because of this, and had 16 guages needles shoved in my elbows for 3 hours at a time, to make myself live, and your telling me, when you can go around doing everyday people things, that I need to go to school more? Ive gone ot school as much as i can, and sorry if i have a doctors appointment, that i HAVE to go to, sorry if i cant brush my teeth in the morning, or take a shower without fatiguing my arms.

Im just really sick of her right now, especially because we just got back from a trip which required TWO planes, and alot of walking through the airport.

she doesnt understand. And i wish i had a mom, who would understand. Yet right now, ive got a mom whos an alcoholic and drug user, that lives states away, and an aunt who doesnt understand.


Sorry for rambling on, i need to get to some hw, that was assigned over vacation.


Thanks for listening.

Tyson, My life has been imploding, so I haven't been around much.

I'm sorry you are not with your Mom but I sure do understand why that is necessary. I'm sorry her life is so difficult that she can't share it with you in a healthy way. Alcoholism/drug addiction (or any addiction) is an illness too and can be almost impossible for some people to recover from.

First, I'll bet that your Aunt can't justify the fact that you went on a ski trip and, because of that, you had to miss school. My parents would not have been very pleased by that either (who were both teachers). School is so important. So try to see it from her point of view. It might help with any future discussions.

Maybe a heart to heart with your Aunt might help. If not, maybe some facts would. There are 640 skeletal muscles in the human body. You have the possibility, having MG, for 1 to 640 of them to be weak at any given time. When they get weak, how weak and for how long is completely unpredictable - a fact which you still have not come to grips with yet (sorry, being blunt). If you can't quite comprehend this disease yet, you can't really expect someone who doesn't even have it to get it.

You saw the ski trip as only "How will my MG do, while I'm trying to have fun?" What you should have been asking is a lot more. How will my heart, brain and kidneys feel when they don't get enough oxygen? Will I have a heart attack? A stroke? How bad will I pay for going on the trip? A lack of oxygen will raise both your heart rate and blood pressure. Did you have sodium in any meals while on the trip? That makes things worse, adds fluid. You need to fully think things through before you do them.

And one more thing. Puking may be a "side effect" of Cellcept but puking a lot can and will do damage to your esophagus. You need to talk about this with whatever neuro you have chosen to go to. Damage like that in the body can lead to inflammation which can, down the road, lead to cancer.

You are still in the denial phase, from what I can gather. It's one thing to keep doing things in life when you have MG. It's quite another to not know yet where that envelope of danger is and to keep pushing it to find out.

And if your docs have not done an echocardiogram and/or stress test, then your heart has not been fully evaluated. An echocardiogram is where they put gel on your chest and look at the chambers of your heart and the arteries. Heart pain is not an MG symptom. Yes, a lack of oxygen due to weak muscles can cause heart pain but it needs to be checked out and definitively evaluated.

It's hard for people to have sympathy when we do things and then complain about how weak we are. I'm sure they're thinking "then why did you do that?" Well, sitting in bed or a chair all day isn't living and we do have to try to do things, knowing what will happen afterwards. But you are taking this "doing" to a whole new, dangerous level, in my opinion. I'm scared for you. Not overly concerned just appropriately concerned.

I doubt that I will ever "accept" this stupid disease. What I can come to grips with is NEVER wanting to end up in a hospital from a crisis again. So I will continue to temper anything I do with the appropriate amount of rest. Lately, it's taking more rest to make my muscles recover.

I'm not all that wise but I am sensible. If you want to live a long and happy life, you're going to have to figure out how to do it WITH the disease. Set yourself up for success by reducing as many energy consuming things around your house (like sitting instead of standing or using paper plates) and figure out a way to SAFELY balance activity with rest. I don't think you've figured that out yet. You do not want to be on a vent for a MONTH because you "like skiing." Or worse yet, in a cardiac ward recovering from a heart attack.

There was a story on the news tonight about a young child, about three I think, waiting for a heart transplant. They managed to wheel him outside in a wagon, wrapped with blankets, to see a turtle. Even he needed some kind of quality of life, something to occupy his mind and inspire him. Choices can make you feel better but they can also make things much worse.

I hope you can get your Aunt to understand all this. You need support and lots of love. Like I say in my book, "Having an illness can make you stronger but it can also snap you like a dry twig."

Please put yourself first . . . and that does not necessarily mean what you WANT to do.

All my best, as always, even though I'm pretty harsh on you sometimes.


Annie

And to add to the confusion . . .

You probably had an increase in adrenaline while skiing. Adrenaline "potentiates" acetylcholine, meaning it increases it. While that may have been good for your MG it may have been bad for your heart. The articles out there are complicated but here are some anyway.

http://www.madsci.org/posts/archives...0695.Bc.r.html

http://www.ncbi.nlm.nih.gov/pubmed/2427705

http://jp.physoc.org/content/101/2/224.full.pdf

http://www.sciencedirect.com/science...27f74885328555


This only makes me believe more that you need a full cardiac workup, including perhaps ultrasounds of the main arteries of the head like the carotid (due to the headaches).

Annie

Tyson,

I am sorry your Aunt is being selfish, and that is what she is doing. You have plenty of "moms" here. Heck if you lived more to the west of the state I would tell you to come on and stay here, we have an extra room and I can say I understand what you are going through.

Just remember you have support here, no matter what, WE all understand!

And a side note... I am feeling great. just had a small setback but all seems good now, isn't that how it always is though? LOL

Hi Tyson, ((((hugs)))) I have this saying, "NO GOOD DAY GOES UNPUNISHED" I'm an MG'er with Heart conditions, so what I'd recommend is for you to talk with your doctor, call them, tell them what you've been experiencing. It may just be muscle spasm in and around the heart. It can be very painful.
I'm not a doctor, so I won't say what you need, only your doctor can tell you that for certain. She give them a call and talk to the nurse, or who ever it is that you talk to there.
Your Aunt really needs to be educated on this disease. Does she go to the doctor's with you? If she doesn't maybe it's time she does. I know you love your Aunt and are just venting, we all have to do that from time to time, and yes our Loved ones, can do drive us a little crazy from time to time.
But wait for a moment to open, and then nab it for a heart to heart with her.
You could start out by saying something like, "you know aunt ---- , I've been feeling this in my muscles, and then they go away, and the moment I do this, or that, I feel this again. I read where this is MG, and it's very serious"
Something a long those lines.
I'm so sorry about your Mom, she is a hurting person who doesn't understand how to take of herself, and I'm sure you have a lot of compassion for her.
And even more importantly, will do everything in your power to take of yourself.
Your new to all this, and I do understand how that feels. You'll get there, just keep listening when you need to rest, Rest period.
Going running cause you felt like you could, I understand, but you will come to understand, even though I feel like I can, maybe I shouldn't do that to my body, as it just had a lot of fun, it needs to rest for a while.
Make sure you call your doctor.
Love Lizzie
p.s. Wanted to know if you've ever heard of Stanley Way? He is one of the very first person to help me understand MG. He runs marathons, and has MG. I also know of a women who had MG, and for the life of me I can't remember her struggles, but they were the worst I've ever heard, anyways, after so many years of getting treatment, and getting stable, she became, I believe a Lawyer. Here's a thing on Stan, http://www.athlinks.com/myResultsAdv.aspx?rid=38853213
Over the next couple of days, I'll find the other person's name,and her story. She e-mailed me personally, as she was involved in our local group, and is well known through them.
Many people with MG, can live a near normal life. But it was through much hard work, or patience. (((hugs)))