[erinhermes]

Hello all!

Spent the day on the sofa - hate that! Do any of you ever feel like Job? I'm serious here.....it just never seems to end! Once I'm doing better in one area the bottom just seems to drop out and I am left @ wits end!


I truly don't get it! I'm also questioning the whole piriformis syndrome b/c my leg now "pops" out of place - it really hurts! My walker has been a blessing but the fact that I am unable to walk without it really scares me - I just do not know where to turn right now.

My right foot and leg are now normal but my left is still swollen and hurts like hell.......I have to drag it behind me wherever I go, so driving is OUT for the time being......

The most upsetting thing is that a few weeks ago I was told there was no real rason for me to hurt like this and then *voila* my spine had a "small" fracture - no doubt due to the pred and now I am still in so much pain that I went to the emergency room for more xrays........

My MG has been fine through all of this - I AM thankful for that - but I just do not get why something ALWAYS has to be wrong...it almost feels like I am being punished for something.

The amount of meds I am on SHOULD make life bearable, but I still wake up screaming if I roll on my left side - there is something SERIOUSLY wrong here!

Then my poor mom fell yesterday (she has been taking care of me) and really hurt her back and my dad was robbed........wht?

Sorry. Just wanted to vent.

Erin

[redtail]

Oh Erin,

Please please don't apologize for venting, you have nothing to apologize for.
Oh honey, this just ain't fair, and no you arn't being punished for anything. Sometimes stuff just happens, and it always seems to happen all at once at some moments in our life. I'm sorry your Mum had a fall and your Dad was robbed (may the thieves armpits be infested with the fleas of a thousand camels!!!!!)

I really am truly grateful we all can come here at our worst and get a load off our chest, and we each in turn understand, it really helps me I know.

All I can say is I'm thinking of you, sending loads of hugs via the internet (((( ))))),
take care,
Kate
ps not offering any advice as my brain is on sleep mode at the moment!!

[DesertFlower]

Erin,

I have been thinking that I feel like Job, too. I feel bad to think it since I haven't had the troubles you have been having, since my MG is mostly under "control"..

My hip joints and knees have started to pop out of place, too, a lot so I am limping around and it doesn't feel good, I have never had problems like this! And I have all sorts of issues unrelated to MG that keep happening to me that aren't my fault and it just never stops. I just can't handle all these things, everything is falling apart and I don't know what to do. I think the world is against me and I am starting to believe that it will be my turn to die soon. So I am ranting, but also starting to feel desperate. I really can't deal with all the things that keep happening.

I hope the curse goes away, for you and for me and for everyone that has it. I am starting to get so cynical I don't even want to say too much about how I feel.

There are still positive things in my life and I am hanging on to every single one of them. I need them so badly...

[alice md]

Originally Posted by DesertFlower

Erin,

I have been thinking that I feel like Job, too. I feel bad to think it since I haven't had the troubles you have been having, since my MG is mostly under "control"..

My hip joints and knees have started to pop out of place, too, a lot so I am limping around and it doesn't feel good, I have never had problems like this! And I have all sorts of issues unrelated to MG that keep happening to me that aren't my fault and it just never stops. I just can't handle all these things, everything is falling apart and I don't know what to do. I think the world is against me and I am starting to believe that it will be my turn to die soon. So I am ranting, but also starting to feel desperate. I really can't deal with all the things that keep happening.

I hope the curse goes away, for you and for me and for everyone that has it. I am starting to get so cynical I don't even want to say too much about how I feel.

There are still positive things in my life and I am hanging on to every single one of them. I need them so badly...

Desertflower,

my grandfather, used to say to us when we were kids-look how resilient are all the desert plants- they have learned to survive with a very small amount of water, and pretty harsh conditions, and still flourish . and you should learn to do the same. always be happy with what you have, learn to use it wisely and try to make the most out of it. you may occasionally have to develop thorns outside, but always stay soft in your core.

he was a "weekend painter" and over my head I have one of his paintings-three relatively small and "weak" trees bending in the wind, and one big and "strong" one on the ground after it broke in the storm.

alice

and Erin,

I actually find Job's story very comforting,
we never know why we suffer, or how long this ordeal will be, but eventually things will get better and those who did not lose their faith in themselves and the world around them eventually have the good life they deserve in one way or the other. and although what has happened will leave some scars, those will graudally heal and slowly be forgotten, as life's good fortunes will take their place.

alice

[rach73]

Im so sorry hun that you feel like this.

It never rains but it pours is what we say over here. Or that everything comes in threes. Hopefully you have had all your three and things will start to get better.

Sending lots of love

Rach

[alice md]

Erin,

I just noticed that you mentioned that one of your legs is painful and swollen. did you tell this to your docs?

this could be a sign of deep vein thrombosis and would require anticoagulation ASAP.

alice

[AtlantaMG]

So sorry it has been pouring down on you lately. Hopefully soon you will start to feel better and get to have a good Christmas vacation.

[Nicknerd]

Hey Erin,

I know how you feel...I often feel like I've been cursed too, especially since the illness affects my speech mainly (much like some stories of afflictions that would affect some characters from the bible)...

I'm sorry that you're feeling so poorly lately...I hope that load gets lighter soon!

Nicky

[alice md]

Originally Posted by Nicknerd

Hey Erin,

I know how you feel...I often feel like I've been cursed too, especially since the illness affects my speech mainly (much like some stories of afflictions that would affect some characters from the bible)...

I'm sorry that you're feeling so poorly lately...I hope that load gets lighter soon!

Nicky

Nicky,

have you tried some speech therapy?
for me it was quite helpful to "learn" how to talk.
I learned to recognize when I better not speak at all, when I should use a very soft voice and speak slowly and when I can speak more normally.
it took a lot of trial and error to learn all of this, but now it never happens to me that people think I am "anxious" or "depressed" or out of my wits, when I talk with them. and no one asks me-where did you come running from? when I pick up the phone. and everyone around me has learned that there are times when I just can't talk and they have to wait patiently until I can.
and I believe that there are some around that are quite happy that I am talking less.

alice

[neutro]

Hi Erin,
You surely could have have done without that hip joint problem...
One idea crossed my mind, I've read somewhere that it is the muscles which keep the skeleton together, would it be possible that your problem is caused by muscle weakness or even atrophy?
Take care,
Maurice.