it is pretty silly of me complaining here.
I appreciate the kind words as always.
Erin-Im reluctant to take any medications that might diminish my mental alertness. I love my woodworking, and now with MG, I have to stay double focused constantly, I wouldnt want to add anything in my life that might put me at any tiny bit of risk.
Work(my job) is a bit shaky for me at later hours, but I get through it ok.
I never want to give up something I love to do, and working with woodworking machinery in this heat is pretty challenging lately. I know my limitations lately. Never thought I had many, now things changed.
I hope you feel better, I hope you all feel better.
Too bad none ofyou live near me, Id throw some steaks on the bbq and tell ya to come over when youre feeling good.

Allen,
It's NOT silly to complain on this site - what do you think we are here for? We all do it! All of us! As I said, you have been thrown a huge curve ball, and for that you SHOULD be angry - anger is a totally normal emotion. I worry about people who are always repressing their feelings - that scares me!:eek:

MG does cause brain fog - @ least for me.

Pred can also cause some pretty wicked side effects. You were hit with a double whammy. You are taking meds that are both dangerous AND effect your moods.

You know that I am pulling for you! You are going to get better soon! The firsr few yrs are always the hardest, b/c the meds get changed around so much and it is so hard on the body, but you WILL get there!

Love,
Erin

I had what the neurologists called an inflammation of my spinal column near my neck back in 1984, that caused me to have constant numbness in hands and feet whenever I moved my neck foward. I was on megadoses of dexamethasone, a powerful steroid, and besides the enormous weight gain, moon face, loss of taste, blurry vision, I totally lost my mind.
I was beginning to make no sense and was having strong feelings to end it all.
Amazing, I was young, had a beautiful wife, just had a baby boy(my wife said I didnt pick him up for 6 months, I just dont remember) and had a good career, but those steroids really did a number on me.
When I called the neuro, he made me come into his office immediately and started to get my dose down until I was off of it.
He became super concerned how my mind was effected by the steroid.
Thats the reason I told my new neuro, I just rather not take any prednisone.
Im trying to get up the courage to let him admit me into the hospital for a couple of days to get the IVIG.
I cant picture myself staying put in a hospital bed like that.
Just being honest.
gotta wonder about that year, cause on Memorial day 1985, I could not move my legs for hours and had to be carried by my mother and wife to the emergency room.

Please dont anyone take this the wrong way.

My only problem lately, is that I feel like I have a timebomb ticking away inside of me, and no matter what I do, Im helpless to stop it from going off.
That helpless feeling of not being able to control my illness is more devasting than the symptoms of the disease Im actually feeling.

Allen, I don't think any one of us would take how you feel the wrong way! It's how you feel and, therefore, important to you.

And saying it could be worse doesn't alleviate your fears or make you feel any better. How about "It could be better" and I hope it will be.

You are the only one who can decide how you are going to be able to handle the hand you've been dealt. And it'll probably take awhile before you come to terms with that and/or the anger you feel.

How about you cut yourself a break? How about you go out and do something you truly love to do. Have someone else drive you on a road trip. Go fishing. Float in a pool. Whatever makes you happy.

Yeah, we all have one disease or more that make our lives a living hell. I for one have had way too many problems in the past ten years and it makes it almost impossible for me to even survive every day. And I HATE that I have to often rely on others. But I'm the only one who can come to terms with all that. After this latest insult of having the "bad" kind of PVC's upon the littlest exertion from a bad, generic drug, I simply can't deal.

So, yeah, it could be worse but that's too negative an approach; at least for me. Figure out how you can make your life better - and ask some people to help you do that. You'd help someone else if you could, right?

Hang in there. Life really is good and so are the people in it. You can at least hold on to that.

Hugs,
Annie

Hey hon! I agree with Annie for the most part - you DO need to cut yourself some slack.

Pred CAN cause psychosis - for some people. It sounds like you need something else for right now!

The only thing I disagree with is the whole "It could be worse" versus "It could be better" - why ponder what is missing when we can focus on the here and NOW? I am not downplaying MG - it has made my life horrible and I hate it, but there are soooo many other truly horrible diseases that KILL people...........

You are totally in the right for being ****** off. But it does sound like you've got a GREAT support system, and lots of friends who love you (myself included).......it is hard, and there are days when I just cry and cry, but then I remond myself that IT COULD BE WORSE. Seeing 2 yr old kids fighting for their lives really puts things in perspective for me. Seeing a couple battling liver/bone cancer does it as well.

I may sound totally nuts, but I am trying to find the positive in this.

I hope this post finds you feeling better! You have been so strong through all of this.

Love,
Erin

Erin, I'm sorry, maybe I should clarify what I said.

I have never liked it when people say "It could be worse." I know people mean well when they say it. But you can't compare situations. Just because someone has something wrong like MG does that mean because someone has something wrong that is different or perceived as worse does that make what you have going on in your life better or okay? No.

Allen may "only" have ocular MG but it is kicking his butt. It doesn't matter if someone else has it worse off. He is the one having a hard time dealing with the loss of what he can do, etc. And feeling like it could get worse. At least that's what I gather from what he has written - not trying to speak for you, Allen!

That's why I like "It could be better." It is a more positive view of anyone's situation. The old making lemonade out of lemons. The problem is that everyone has a different time clock on how and when they deal with their problems. And some people can't handle a cut finger while others can handle heaps of crap loaded on them.

My point was that we all need to do whatever we can to "make it better" for ourselves. And ask for help. Don't compare what you are going through to what someone else is going through. Just do what is best for YOU.

I hope that clarifies my point. Allen, I just hope you can find something to get you through all this.

Annie

Hey there! You were right on - I was being insensitive. Granted, I wasn't trying to be, but was nonetheless. You cannot compare apples to oranges, and that is what I was doing.

MY way of thinking is that is could be worse, but then again, it is MINE. That is the only was I can cope with this disease, I should not have tried to force my views on another person.

What works for me won't always help others.

I thank you for bringing that to my attention!

Big hugs!
Erin