[allen L]

I cant help it.
So many of you here have adjusted to the hardships and I know my case of MG is only ocular right now, but it has most definately effected(affected, more like INFECTED) my quality of life.
Im having a difficult time accepting this is the way I might have to spend out the remainder of my years. Im not happy, and Im really angry.
Ive had the living in todays world surgeries, back, melanoma, hernia, knee, the main course of ailments, and Ive been a bull my entire life, bounced back, never looked back.
I love life.
I never expect my wife or children to give up or sacrifice anything for me.
Ive become a hermit almost. Im so uncomfortable travelling anywhere at night, knowing my eyes want to shut, and dont cooperate with me sometimes.
I havent ventured too far away from home since I began the Mestinon and had some rough periods with my stomach, having been diagnosed with diverticulosis a year earlier. Not a good combo.
Im not a crybaby. Im not looking for sympathy, empathy, whatever its called.
I cannot believe the determination of so many of you here.
why arent so many of you cursing and kicking things?
Yeah, I know it wont help, but Im so angry Im one of the lucky ones chosen to have this disease.

I went to my Neuro on Monday.
He asked me how Im feeling.
I looked at him and said, how am I feeling? Using some choice 4 letter words, not directed at him ofcourse, I told him how angry and ticked off I was.
I spent the last almost 40 years working hard so I can enjoy my life when I got to this age, travel, being able to afford things I could never afford when I was younger. Now Im a prisoner of Myasthenia.
And I know Im not a prisoner, but not having the confidence that I can drive myself home from a night of poker with the boys, or take my wife out for an icecream at 8 pm, well, those are only the tiny points, But its all the small things that make life grand, and this MG, well, it takes away all the small qualities of life Ive always looked foward too, and worst of all, always took for granted.
Cant fight it. Nothing I can do, but wait to see if I get better, if Im one of the llucky ones, or wait till I get worse, and I dont like my odds.
My neuro suggested I might do well on IVIG.
I thought it was a few hours in an outpatient atmosphere.
He then informed me I have to go into a hospital for 2 days at least to be monitered the first time. After that, I should be able to arrange out patient.
Just hard for me to accept, sorry. Im not a happy camper these days.
Alot of you are inspirational to me. Youve overcome such incredible disabilities associated with this disease. I bow to you all.
Me, I want to punch out the first person that doesnt understand why I wont come over to their house on saturday night, or wont go to the movies with them. Im so tired trying to make anyone understand.
Im sorry about the ranting, Im just really angry with Myasthenia gravis.

[Joanmarie63]

I hear you! Must be the full moon. because to day I too am very angry, I actually fell today I haven't fallen in years! I feel so stupid, I mean whats up with that? I am 46 and fell right down on my knee in the road and yes I admit I cursed like a sailor and my poor son came running over and helped me up and said "I noticed you were wobbling, I was wondering if you were going to make it to the car" Ohhh I thought, well why didn't you stop me before I went into the street...LOL Anger in a normal feeling for us and we all have it, and it is GOOD for us to be able to express it! if we keep it bottled up inside it makes it worse on our MG so Allen, thank you for posting this because I wanted to and YOU helped me today

[AnnieB3]

Allen, I am so sorry (no pity intended) that MG is affecting your life in such a big way. It doesn't exactly help to know that it does that to the majority of us.

I go through a lot of anger phases. I hate that this stupid disease has gotten in the way of so many things I love to do. And it gets in the way of the little things I used to take for granted, like just sitting.

When I got sick, I sought out a psychologist who was an expert at helping people cope with diseases. She gave me a lot of coping tips that really do help. But the bottom line is that MG is just damn hard. You don't know from day to day how bad you will be doing. And I agree, it does often feel like a prison. For me, it feels like I have power over nothing; which isn't exactly true but it often feels that way.

I think it took five years to get to any degree of acceptance. Even so, I still get mad like you do on a regular basis. I'm grateful I am tenacious or what I've gone through (not just MG) would've killed me by now.

You just have to set up your life for success. I know, that sounds trite. But really, take some time to write down how you feel, what you might be able to do to make daily things easier, etc. Like blowing the air in the car on your face when you go out. Like having paper plates/spoon/cups (even though it's not environmentally friendly).

I'm glad your neuro was sympathetic and will try IVIG. Think of the time in the hospital as an investment in your health and well-being. Who gets something for nothing these days?

I do understand the level of anger. So many people can't deal with that emotion. It scares them. But it's so normal. One summer I had a pinata for my birthday just so I could hit something! There have to be ways that you can get out your anger so you could feel better. Anyone have any creative ideas for that for Allen? Like get a water pistol and shoot at things in your backyard. Or scream when no one's around. Or write.

I don't know what to tell you because there is no good answer. It's a constant struggle to deal. I think that life always surprises you though and you never know what good things can come your way to lighten your load.

Annie

[whirlwind123]

Boy, what you had to say sounds so familiar. I get so angry because I can't do what I used to ., my stamina is way down., and like you my eyes get so goofy you are fearful to drive any distance and especially at night. I know it was the last things I expected to hear when I kept suffering from double vision for 8 months and then was diagnosed with myasthenia gravis, I can still remember coming out of the opthamologist office after the diagnosis and my husband saying it will be okay., and I said no it won't. Lots of anger and I still get angry. I am learning how to deal with the disease. Resting when necessary and listening to my body. Everyone on this board has really helped me with the dealing, Thank goodness I found this board so soon after being diagnosed. I am a worrier always was so at first I worried about everything that could happen to me. Now I am a little calmer, and try not to think to much about what if??? Instead I try to think about right now. I just started a part time job., and my eyes get really goofy after all day at work., but mentally the job has helped me, and I rest alot when I get home., and I will do the job as long as I can. Take a day at a time., and yes anger is part of having the disease. Take Care, Nancy

[lovetogarden]

I get it allen. My myasthenia affects my breathing and that affects everything. I am very depressed right now because i am not a functional member of society. My breathing is so bad that i can't be left alone right now. My doctor just says he'll schedule this or that and never does it. I cannot make it out of town to another doctor because i don't have a way there. I'm sick of this disease and doctors playing around with my life. I have actually considered suicide or pumping up the meds on my own and I am a Christian, so this kind of thing would not usually be ok with my beliefs. But I am pretty fed up.

On a better day, I would tell you to hang in there. Right now, I can only empathize with you.

[allen L]

sorry. just cant get by the anger I feel.

[AnnieB3]

Allen, Getting past it doesn't happen overnight and, for me, it never goes away. It's learning to live with it that takes time. I'm sorry you are angry but it's so normal to feel that way.

Are you feeling a little suicidal? I hope I'm not insulting you by saying that. You just sound a bit like you've given up. Please don't, if you feel that way. And I hope I'm not making you angrier by saying this.

MG sucks. But I for one REFUSE to let it beat me down.

[redtail]

Yep I certainly get it.
I mean really, why on earth should me a 37 year old woman have to ring her nearly 70 year old Mum to take her to the doctor's appointment, because shes to dodgy to drive.
GRRRRRRRRRR( I would have liked to use stronger langauge, but its a public board)
But my bigest gripe(being a single woman), and I've never ever talked about this before, is, why go out and mingle who the hell would want someone like me, totally useless and not able to do anything like I use to...............Yep I'm angry, still even after nearly 7 years, cos this horrible disease took sooooo much away from me.......
Yep Allen, I know exactley where you are comming from, I'm just glad I can come here and rant and share with all of you, because you know first hand what I'm going throug, and always listen and care, oh and sorry for the rant
Kate

[Nicknerd]

I know exactly how you feel, Allen! The funny part is how seemingly excited the neurologists seem to have an 'MG patient.' Do any of you get that impression? When I first started exhibiting these symptoms, my initial neurologist almost seemed happy that I was an MGer, then would follow the head specialist in MG, the residents, etc. They seem to believe it's so treatable...I was so hopeful that my symptoms would go away, but i'm now realizing that this is something I'm going to be struggling with on a daily basis for a while into the future...My voice is somewhat normal now, but I still can't really sing, talk for too long, etc...The only real difference is that when I first start to talk, my voice is normal...As per usual, though, that old chestnut comes back...It's so irritating...The last few days in the hospital were very depressing for me...I was really begining to see the progressiveness/tenacity of this illness...I spoke with a speech pathologist who said that I should see one often to manage my symptoms...I thought the symptoms would go away, so why should they be 'managed'!

Anyway, all I can say is that things could really be worse, believe me! I know that it's bad to compare, and many people around me love to do that, and it can be annoying since it's no walk in the park dealing with this disease...But it really could be worse! All you can do is try to make it through...As cheese and cliche as it may sound, being hopeful will help...When I feel stressed/sad, my symptoms get worse...Also, I really do believe there is hope, especially since I've met someone who had pretty much the same disease-activity as me and seems to be asymptomatic now...

Take heart...The right combination of meds should help, and later, you might not need anything at all to manage your symptoms/disease...Don't get too down, even though it's hard not to...Things will get better!

Nicky

[motorhead]

i can relate allen. with me it's the weakness. i do rage a little in frustration when i drop a tool 'cause my hand just opens by itself or i can't lift or pull something, as my grandma used to say, "the air turns blue"! i too dislike relying on others. most of my life it's been the opposite. probably not much help. just saying you aint alone.