[erinhermes]

Hello all! I've had a tough week - barely able to get off the sofa or get anything done......it just seems that when I am doing better, something blindsides me and I am down for the count. Don't get me wrong, I am very appreciative for this site and all of my amazing drs, but in the last 6 months I've had whooping cough, pneumonia, multiple abcesses, etc........I just do not understand. I'll have 2-3 good days followed by a week in bed - do I have an aggressive type of MG or is this the "norm"?

Any input would really be appreciated!

Big hugs!
Erin

[nemsmom]

Originally Posted by erinhermes

Hello all! I've had a tough week - barely able to get off the sofa or get anything done......it just seems that when I am doing better, something blindsides me and I am down for the count. Don't get me wrong, I am very appreciative for this site and all of my amazing drs, but in the last 6 months I've had whooping cough, pneumonia, multiple abcesses, etc........I just do not understand. I'll have 2-3 good days followed by a week in bed - do I have an aggressive type of MG or is this the "norm"?

Any input would really be appreciated!

Big hugs!
Erin

Well Erin,

I have not been diagnosed with MG, don't think they are even considering it anymore. But that is how I am.

1 to 2 okay days that I usually push myself on and then at least a week to recover. I hate it.

Wow, sorry I know I had more I wanted to say but I just can't think. I'll talk to you soon, take care and get to feeling better.

Kristie

[stayathomemom]

Erin,
I'd say with all of the infections you have going on in your body right, your MG is going to be flaring like crazy. Those flares can be short-lived or be like mine is & gear up of a case of MG that was manageable for years.

I think once the infections are all cleared, you will have a fighting chance of getting your MG on a more even plane.

I recently had some plasmapheresis & IVIG,my Imuran has been raised A LOT and I'm back on Prednisone. A "low" dose of 15.

I haven't felt this good in a long time, but am so afraid it will be short- lived. I've been running around with my head chopped off.

I'm trying to buy school clothes for the children now; in case I'm down for the count in August.

My helper will stop coming for the most part when school starts.

My dh is rearranging his hours at work. He will be at home to get the children on the bus in the AM, just in case I can't. Kindergarten is all day here. My mother will meet the bus in the afternoons, if I can't. I just have to phone her.

Erin, MG is going wax & wane. Everyone's severity of it is going to be different.
I have learned to do things when I feel well, even if the timing doesn't make sense to anyone else. Christmas shopping in June? If that's when you feel well, do it then. Eating a steak at 6 AM? If that's when you can chew it, enjoy your meal.

Best of luck to you and try to stay cool in the severe heat.
Jenna

[suev]

Erin,

Hang in there! Only being here a short time - - I know you are a very optimistic, upbeat, and caring person. It is obvious that you reach out to others keep their spirits up (I can see that in your posts). So now it's time for you to receive the optimism and good wishes from others.

As frustrating as it is, don't fight 'slowing down'...in fact, maybe force yourself to slow down more - especially on your good days for the time being. Give your body good nutrition, good thoughts, and plenty of sleep (not just rest...sleep!)

I remember you saying in a recent post that you really pushed getting the closets cleaned - and it felt so good to accomplish something. Maybe you just over did it a bit and your body is telling you about that!! So...No More Closet Cleaning! (Most people I know would be delighted to hear that!!)

Stay out of heat (from a fellow Texan) - and know that everyone is thinking of you and wishing you better days.

Sue

[momma3love]

Hey Erin!
Sorry you are feeling so cruddy. The same does seem to happen to me too tho. I always seem to get sick whenever I start to feel better. I guess that's what we get for suppressing our immune systems and our immune systems being wacky. But I dont think you are alone on that problem.
I hope you feel better soon Erin. Hang in there and keep that positive attitude we all love!!

Originally Posted by erinhermes

Hello all! I've had a tough week - barely able to get off the sofa or get anything done......it just seems that when I am doing better, something blindsides me and I am down for the count. Don't get me wrong, I am very appreciative for this site and all of my amazing drs, but in the last 6 months I've had whooping cough, pneumonia, multiple abcesses, etc........I just do not understand. I'll have 2-3 good days followed by a week in bed - do I have an aggressive type of MG or is this the "norm"?

Any input would really be appreciated!

Big hugs!
Erin

[erinhermes]

Hey hon! Thank you so much for your kind words - they mean so much to me!

How are YOU doing? What are they considering now? Don't you HATE brain fog? It drives me CRAZY!

Today has been better. I slept until noon AND my hubby is coming HOME in a few hours - YIPPEE! I've spent the last couple of hours trying on different outfits and jewelry - I am so excited!

Hopefully Dr. I will have a plan to keep me more balanced........

Big hugs!
Erin

Originally Posted by nemsmom

Well Erin,

I have not been diagnosed with MG, don't think they are even considering it anymore. But that is how I am.

1 to 2 okay days that I usually push myself on and then at least a week to recover. I hate it.

Wow, sorry I know I had more I wanted to say but I just can't think. I'll talk to you soon, take care and get to feeling better.

Kristie

[Joanmarie63]

To tired for words right now so a hug will have to do
ERIN

[xmas 25]

hey erin-i sure hope today was a better one even if just some small way. how long was hubby gone? maybe you were prostrate with missing him. sorry i read alot of victorian books when i rest!! it will get better can't say when but it will!!

[erinhermes]

Hey there! You are so right about the infections.....my neuro says that I get sicker than any of his other patients......but I had a terrible dentist who shaved my teeth down waaaay too far for m crowns and have had over 30+ root canals to date!

I am so happy to hear you are feeling better! THat is awesome! How much Imuran are you on now?

THat is so smart to take care of the kids stuff now - you never know what 2morrow holds, but I bet in your case, you are going to feel GREAT for a long time!

It sounds like you hve a GREAT support system! That is so important!

Big hugs!
Erin

Originally Posted by stayathomemom

Erin,
I'd say with all of the infections you have going on in your body right, your MG is going to be flaring like crazy. Those flares can be short-lived or be like mine is & gear up of a case of MG that was manageable for years.

I think once the infections are all cleared, you will have a fighting chance of getting your MG on a more even plane.

I recently had some plasmapheresis & IVIG,my Imuran has been raised A LOT and I'm back on Prednisone. A "low" dose of 15.

I haven't felt this good in a long time, but am so afraid it will be short- lived. I've been running around with my head chopped off.

I'm trying to buy school clothes for the children now; in case I'm down for the count in August.

My helper will stop coming for the most part when school starts.

My dh is rearranging his hours at work. He will be at home to get the children on the bus in the AM, just in case I can't. Kindergarten is all day here. My mother will meet the bus in the afternoons, if I can't. I just have to phone her.

Erin, MG is going wax & wane. Everyone's severity of it is going to be different.
I have learned to do things when I feel well, even if the timing doesn't make sense to anyone else. Christmas shopping in June? If that's when you feel well, do it then. Eating a steak at 6 AM? If that's when you can chew it, enjoy your meal.

Best of luck to you and try to stay cool in the severe heat.
Jenna

[erinhermes]

Hey hon! How are YOU doing in this awful Texas heat? Are YOU OK?

I think you are right - I MAY have overdone it with the whole closet thing - I just hate lying around, but right now I think it's best to just RELAX and let my body heal............I have mild OD, so when I do feel well, I tend to try and get everything done, but regret it the next day..........I can be foolish @ times! LOL!

Thank you so much for your kind response - it means so much to me!

Big hugs!
Erin

Originally Posted by suev

Erin,

Hang in there! Only being here a short time - - I know you are a very optimistic, upbeat, and caring person. It is obvious that you reach out to others keep their spirits up (I can see that in your posts). So now it's time for you to receive the optimism and good wishes from others.

As frustrating as it is, don't fight 'slowing down'...in fact, maybe force yourself to slow down more - especially on your good days for the time being. Give your body good nutrition, good thoughts, and plenty of sleep (not just rest...sleep!)

I remember you saying in a recent post that you really pushed getting the closets cleaned - and it felt so good to accomplish something. Maybe you just over did it a bit and your body is telling you about that!! So...No More Closet Cleaning! (Most people I know would be delighted to hear that!!)

Stay out of heat (from a fellow Texan) - and know that everyone is thinking of you and wishing you better days.

Sue