Hi Miacchris2,

welcome to the board, sorry its a bit belated, I've been off line for a while.

How are things going now?? Sounds like you've had a hard time of it lately. Its great you were able to get someone in to help you clean. A clean house certainly makes me feel better. My poor house is suffering at the moment, as I don't have any extra energy to clean, still it doesn't complain. I think I'll have to put in an extra effort today to clean it before my visitors arrive for christmas.

I hope the IVIG helps pick you up
take care
redtail

A little off topic, but had to comment to Erin's post on the 15th about "You used to be so thin"?

I too have had my battles with prednisone and weight. 5'2".....well over 200 pounds. Couldn't buy reams of materials big enough to cover my fatness........enough said.

So when I got soooo sick and went through Chemo again and then subsequently a year later I couldn't swallow and I lost a bunch of weight, and all my muscle mass (couldn't even hold a full cup).

Anyway, somebody who knew me when I was larger made a comment to me. "Oh, look at how much weight you lost. I wish I could lose weight like that - how did you do it?"

"I have cancer, got sick and couldn't swallow anything without it coming out my nose."

That pretty well ended that conversation.

Lydia

so how does one fight the blues?? WEll first, can you get outside at all?? Sit on the patio in the sunlight?? This time of year the lack of direct sunlight can add to depression. Many people use special lights to combat this.
Movies, go one of two ways, comedy or tear jerker. LOL Yes sounds odd, but if you need a good cry at least you have a "reason" If not get the funniest movie you can think of. (not sure where you are from, but there is one called redneck comedy tour with jeff foxworthy et al, laugh till ya hurt)
Surround yourself with positive people. some people are just ignorant beyond beleif. I too have a ton of pred wt gain. and I walk like a drunk. And I look stoned with low set eyes and the odd grimmace. but it is just me. I can't do a whole lot to change it all. But as others have said, ya gotta toughen up buttercup. LOL.
I will share a second. One of my pet peeves has always been overwt people. I could see no reason for it. Food in mouth disease is the leading cause of obesity in this country. I worked out two hours 6 days a week. Ate when I remembered to, was go go go. Metabolism never slowed down long enough to add wt to the bod. Then came prednisone. I fought it and fought it. I ate right, couldn't really "exercise" anymore and certainly not like I used to that is for certain. And little by little over the last years at 60mg a day I have packed it on. I disgust myself, but then I have to say hey, suck it up buttercup. Get your head outta your butt and live. MG doesn't define who we are. It should NOT ever do that. We are who we are and the MG is just a side not to an otherwise sterling life.
No I am not some polyanna smiling fool. I just know that if I am having a bad day, I allow it for ONE day. I can use that day to wallow in self pity, wring my hands and just be a brat about it all. Day two, get over it buttercup!! And jerk myself up by the bootstraps. We need that time to let it all go and just be. That really helps the psyche adjust and have time to assimilate the new developements.
Don't fight against it all!! You have to let it out. But don't make it your life. Like I said, say OK you, this is the time I am allowing self pity and big pity party. When the time is done, you gotta get on with it.
Find something to do with yourself. Handi-work. games. puzzle building. Volunteering to help someone else.
Are you sprititual? Do you have a relationship with God?? If so, talk to Him. He is there. He is always ready to cradle your heart and give comfort. You don't have to have some sort of fancy prayers either. Just let your heart flow out to Him. He already knows it, but to be able to just say it out loud, oh what a releif.
Also, is there anyone you can feel safe talking to?? OF course we are all here. We are always around. and it really helps to talk with others sometimes who just know and understand without some long drawn out explanation to give just because you are not able to do what everyone expects of you that day.
Got a pet? A creature who will love you just because you are you?? that can help immensly. Unconditional love. But get one that is easy to take care of.
Now is not the time to get a high maint puppy. How about a nice 3 year old dog/cat?? One who is past the wild and crazy days and is now just into long snuggles. Studies have shown that petting a dog will lower the blood pressure.
meditation, also a wonderful thing. You clear your mind totally and only allow in the thoughts you want. Totally zone out. You will be so refreshed after that. Then get positive thoughts going and move forward.
Like music?? I adore LOUD music. and if you can move to it that is all the better. Find some tunes, jack em up and dance around with abandon.
The main thing I guess I am trying to say is get the heck outta your own head for a while. It can be a very lonely scary place if you are feeling down and out.

well prob much longer than necessary, time for me to sign off and get to bed!!
hugs

Hi!

My daughter has MG, so I can relate.

I can give you free advise. I used to work several years ago in the Loss Mitigation Dept. of a Loan Servicing Company that helps people avoid foreclosure.

Thanks.

Rohm.

Hi, My name is Barbara.....I was diagnosed almost 5 yrs ago at 27 just after having my second daughter.......I was is shock.....I had a thyoma so large they had to crack amy chest open.......so I had to go live my ex inlaws because I couldn't lift the baby (who was born with the sympoms and was a Vanderbilt for a month getting feeding tube )------anyway-----I felt and still do......like I died and was left with the shell of a body.....no one understood, they still don't.....My deppression is so bad that most of the time I think why coudln'd I just got cancer adn died.....something someone knew about.......I still am not coping with what is going on......I have no support or understanding. My doctors have tried to expain it to my family but.....who can understand that someone can be fine one minute and have to go to bed the nextl.
Sorry I got off on myself, but just wanted you to know tht you aren't alone.

Hi mgmom

welcome to the board

I'm glad you've found this friendly board to come to!! I've just realised, I've had mg for 6 years and 2 weeks, well official diagnosis!

I know exactly what you mean about the cancer

Keep comming here for support and understanding, as we all help each other out, if you are having a bad day someone gives you support and vice versa.

Take care of yourself, and know you are not alone
redtail

I am so sorry you are having to go through this.......I am newly diagnosed (well, 10 months ago) and still have dark times, but Paxil has been a great help for me........It sounds like you have no support system........your family needs a jolt of reality.....No one wants to have MG.....none of us like being heavily medicated in order to survive, but we do what we have to in order to LIVE!!!!!!!

I am 34 with a 16 yr old son and hubby that is the best - most of the time......he still doesn't get the whole "feeling great one minute and crashinbg the next" but he is trying to.......cuz' I told him if he couldn't deal with it I'd leave him.........Sounds drastic, I know, but most of my family calls this my "lazy bone" disease - lazy bone? It danr near killed me - spent a lot of time in the ICU for a crisis.........My little sis and I were always very close until my diagnosis, now she gets mad when I have to work from home or can't watch my niece.........Family, can't live with them - can't live without them..........Do you have an MG support group where you live? I have one here in SA and it has really helped! I brought my hubby with me so he could hear others talk about this disease........MY FIL has been the best - truly. He always visits me @ the hosp and just sits there - no feigned or forced conversation........AS for the rest of them, they'll just have to suck it up and deal with it. I don;t have the time or the energy to have negative people around me anymore.........

You may want to ask your doc about some meds to deal with your depression...........It has really helped me out a lot!!!!!

Hang in there!!!! If you need to talk anytime, I'm here for you!

Erin Hermes