Allen, You are very talented. Everything is just so beautiful! Thanks for sharing. Take care.

Hugs,
Pat

thankyou for all the kind and encouraging words.

Im not as courageous as so many I see here by reading their posts.

Ive gone about my life always taking for granted the things I rely on most will always be the same way, just a little more achy and as I get old, and add some pounds, a little harder to do.

When all this started, and I was back in clinics for cat scans of my thymus, MRIs of the brain, it started to bring back horrible memories when I had cancer and multiple back surgeries. The endless doctors appts, the nothing to look foward too except more testing and then some, I used to get so depressed.
Its been years.

So many of you here have such beautiful postitive outlooks, bright personalities, overlooking the horrible hand we've been dealt(and I onlly have ocular version now).
Its not as easy for me to accept, being relatively healthy for 55 years, just a few short setbacks.
Its not easy for me to read about some gentleman being happy to be able to cut down a tree and then paying the price, or some young woman not having the strength to put barrettes in her daughters hair.
Its heart wrenching to me, I cant help it.
Im in this club now, a club I didnt want to join.

I dont know anyone(well I found out someone I know has it) who has this disease, non of my relatives know anyone with this disease, my doctor has no patients with this disease, my eye doctor says he once had a patient years and years ago with this, my friends and family dont understand why Im just not in the mood to go out at night and have to deal with the uncomfortness. They tell me I dont look sick, they will drive, we will take you home if your not feeling well..........they just dont get it.
I was so uncomfortable in the beginning, the mestinon torturing me, I just didnt want to have to be running looking for rest rooms every 10 minutes, something its hard to explain to someone.

Im sorry for the rant.

You are a good bunch of strong willed and courageous people.(and pleasent)

I wish remission for all of you, as soon as possible, so we can all go out to the beach and toss a frisbee around in the surf.

Ahhh you too are strong, you just don't know it yet. Where are you located? A friend of mine just told me her neighbor was just DX'ed with MG and he is about your age. I told her to tell him about this site maybe he will join as well. As for the fact that people say "you look healthy" we all suffer from that, sometimes I want to put a fake cast on because then people won't say anything..LOL

IM located on the western end of south nassau county, on Long Island.

Hi Allen,
It's good to meet you. Everyone here is so great! I can't tell you how much they have meant to me and how much they have helped me. Your woodworking is beautiful! You are really talented. I wish you lived nearby. My son is 25 and wants to learn how to build furniture. He would love to have someone like you to teach him. Take care and I hope you have a good day tomorrow.

ckitty

Hey Allen,

You never have to apologize for ranting...most of us have on occasion. With this disease still being considered rare, it's not easy to meet someone with MG. I don't know anyone in my area who has it. The nearest support group is 60 miles away in a rather large city. I've had it for going on 11 years and this is the first support group I've joined. I don't know how I managed so long without all the wonderful people here. I don't feel so isolated anymore and everyone here knows exactly what you are going through. As you know, those that don't have it, can't possibly understand. I know what you mean about having a hard time accepting it at your age. I'm 57 now, and I learned to accept it quite a few years ago and you will too. It just takes a little time. I wish you all the best and hope your neuro is right and you continue to have only ocular...many have. Take care and again, welcome!

Hugs
Pat

something I heard that I found incredible, the odds of this were probably 20 million to one-
I came home from work a few weeks ago, my daughters roomate from college was over for the weekend, she lives in the Buffalo are of NY state.
While my daughter mentioned my eye problems to her roomate, her roomate sat up and said, my father just retired because of his problems with Myasthenia.

I could not believe my ears.

If hes on this forum, Im Marissa's dad, please say hello.(I know its weird in all these years we never met)

Your stuff is brilliant.

Yeap we've all joined a club none of us ever imagined we would be in and if you want to rant come and join us. We all have a rant if we need to. We do it here as people understand what the daily battle can be like and we know it wont be held against us!

They are a brilliant bunch on this site and very supportive.

As someone else said you have to take it a day at a time, when you are up to doing the woodworking you do it. My thing is cleaning although my mother would have never ever thought that it would be! I like a clean and tidy house. However I have been in a slow decline for a while and the cleaning has had to be put on the backburner. Someone said and I can't remember who, "you'll have to live with the dust bunnies" and yes they are right! I was horrified at first, but its true. I can clean myself into a collapse and hospitalisation or I can learn to turn a blind eye. Its taken me 2 years to get to this. Sure I will clean if someone comes around, but I can't do it everyday and if I do, do it I have to limit other things I enjoy. So its a balancing act! And sometimes you get it wrong!! LOL.

Take care
Rach

I thought I could just go about business, since I only suffer from the tired eyes.
I went to my first class at night on weds night 7-10 pm.
I had to drive in traffic about an hour.
by the time I got there, my eyes decided they have had enough.
I constantly remind myself Im lucky to only have ocular Mg and dont suffer like so many do. Having reminded myself, it didnt seem to help.
I got out of my truck and had problems focusing my eyes were so beat.
I took a quarter of a tablet, and sat in the truck for 20 minutes and cooled off.
I went upstairs, the eyes got a bit stronger, but driving home at 10 was not easy. I wouldnt tempt fate again.
Its incredible that the more I try to lead a normal life the more the Mg, no matter how mild I have it, seems to drag me down to a level that makes it difficult for me to do simple things.
I havent been to school in 35 years, I figured Id have a good time.
The instructor was under 30, and the students were all under 30, and when I broke out in a heavy sweat, typical when the mestinon kicks in, I noticed them all looking at me like I was some type of rabid animal.
I laughed, and explained to them, no, I dont need the ac turned up or a break, its just a medication that makes me perspire. (but they still gave me looks. I guess a guy with a faucet running down his face is peculiar, but now I laugh it off)
My wife has agreed she will drive me to any classes in the future, and read a book while she waits for me.
Compromises have to be made, Im lucky my wife and kids lend me any time I need from them.

Im just noting this experience, only because Im amazed how difficult life can be even with just very mild symptoms of this crappy disease.
I wish you all strong days, and hope you can function and be happy, and enjoy family and friends any time you want.