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-   -   Done with my monthly IV IG! YAY! (https://www.neurotalk.org/myasthenia-gravis/86615-monthly-iv-ig-yay.html)

maryec 05-10-2009 06:43 PM

Erin, your so funny ! I have trouble with my eyes reading, & miss stuff sometimes, I always reread, if it sounds to funny ! LOL..... I have to laugh at myself sometimes.
Mary

momma3love 05-10-2009 07:01 PM

Hey Erin
 
I went on a cruise 2 years ago, but that was in the opposite direction. We went to Mexico and Jamaica. ;) I have been sorta dxed for 6 years, just positive last year. So I just had the surgery on the 14th. But anyway my point was, lol, that as long as I did not do too much walking I was ok. But that is hard to do on a huge ship and when you go on an excursion. I think the climate change was pretty tough at first tho. So I hope you will have time to adjust to it. I was really really scared to go too. But it was such an awesome experience for me and my kids. And thank goodness everything went ok.

I am glad you get to lower your pred. That stuff is horror, but so necessary. Glad to hear you are feeling better!!!:hug: Hope it all works out.

Quote:

Originally Posted by erinhermes (Post 508398)
Hi Becky! It WILL be great to have my PICC line pulled and not have have to make my weekly trek to the hosp to get it flushed/cleaned. They are so good to me there, but I hope I don't see that place for a looooooooong time!:D

I am already feeling the effects of the IV IG -was able to go to my hubby's show yesterday and did some shopping - it felt great, but as usual I overdid it and am paying for it today......It is just so hard to try and rest when I feel so good. I've already been chewed out by my neuro and will do my best....Lord knows I don't want to be back @ the Methodist!

It is so funny b/c I am so used to having my line that when I'm out in public and people stare I think "Dang, I must be looking gooooood today" until I realize that they are looking @ my line - not me! I laughed when I realized what they were staring @!

I cannot wait to be in remission and take less pills! It will be awesome! I just know it will happen! My neuro told me that people usually go into remission 1- 2 yrs after the thymus is removed - well, I've reached the 1 yr mark, so I a ready!

My hubby was able to get us a cruise on barter to Alaska. I am excited, but am also very nervous! I am not used to being that far away from Dr. I...........
To be honest I don't even know if I want to go..........I am scared. Does that makes me nuts? I mean I know I won;t get weak like I used to, but just the thought of getting that sick again makes me cry...........

Big, big hugs!
Erin:D









erinhermes 05-10-2009 10:58 PM

Hi Maryec!
 
Hey there! :D

We are a pair, aren't we? I have problems with my eyes as well, after a while they get sooooo tired and watery that I can barely see.....sigh......

What a great weekend! Mike made me breakfast in bed this morning and I was able to get my house cleaned - felt great!

You should see me with my line in.....it has become 2nd nature to me - my sis calls me frankie cuz' of all of my tubes, but it is well worth it.:D

I THINK the Imuran is finally kicking in cuz' I was able to walk .4 mile yesterday in the heat - stupid, stupid idea, but I still was able to DO IT! I was a drowned rat by the time I got to my hubby, but was proud - that (for me) is a lot of walking!

Can you imagine if my neuro DID approve implants? They'd prolly end up in my knees or something - with us MG'ers you never know! I am soooo glad I did not get them years ago - I bet I'd have some serious problems with them now...

Also, I know my ped is a bit high b/c when it is I start to get facial hair - woo-hoo(!) - and that is my body's way of saying to knock it down for the time being. I see Dr. I (my boyfriend) on the 13th - hopefully he will reduce it to 20 or 25..........

How was your weekend?

:hug:Erin:hug:



Quote:

Originally Posted by maryec (Post 508448)
Erin, your so funny ! I have trouble with my eyes reading, & miss stuff sometimes, I always reread, if it sounds to funny ! LOL..... I have to laugh at myself sometimes.
Mary


erinhermes 05-10-2009 11:10 PM

Hi momma3love!
 
Hey there! Thanks for making me feel like I'm not nuts.........I don't like vacations as it is, but my hubby loves them and really DESERVES this time and I love HIM so I go! I would much rather go in an RV, but Mike likes to fly, plus we have to get to Canada and by the time we got there it would be like a scene from that movie with Jack Nicholson - you know "redrum", "redrum" - lol!

MG is just scary! That is all there is to it! I'd love to take my dr with me, but no such luck! LOL!

Flying is another fear of mine - did I mention I'm OCD with control issues? We have had some really close calls - emergency landings and such - and that did not take the edge off for me! But, Mike does deserve this. He is the best! When we are in town we can never get away from customers and he now has high blood pressure. I've got to keep him around! I'd be the crazy dog lady with 50 dogs or something like that - can't turn them away!

Alaska will be great! I've been there b/4 and loved it! It is so beautiful and pristine..........We may go fishing in Ketchican and take the train in Skagway - they were a huge hit b/4..............

How was your weekend?

:hug:Erin:hug:



Quote:

Originally Posted by momma3love (Post 508457)
I went on a cruise 2 years ago, but that was in the opposite direction. We went to Mexico and Jamaica. ;) I have been sorta dxed for 6 years, just positive last year. So I just had the surgery on the 14th. But anyway my point was, lol, that as long as I did not do too much walking I was ok. But that is hard to do on a huge ship and when you go on an excursion. I think the climate change was pretty tough at first tho. So I hope you will have time to adjust to it. I was really really scared to go too. But it was such an awesome experience for me and my kids. And thank goodness everything went ok.

I am glad you get to lower your pred. That stuff is horror, but so necessary. Glad to hear you are feeling better!!!:hug: Hope it all works out.


neutro 05-11-2009 09:51 AM

I'm glad to read that you fully benefit from your IVIG's which make you capable again to do things you were doing "before"…
I would like also to point out that, if wonderful husbands are a blessing, wonderful wives do also exist…
I think also I pretty well know how you feel about your projected cruse to Alaska, we will be flying next week to Sicily for an 8-day tour, that will be our first "big" vacation since my MG started and I am also a little nervous, will every go smoothly? I liked to travel (and still do) but I'm doing it also for my wife, same as you…
Maurice.

ras1256 05-11-2009 10:20 AM

Erin, you are such a hoot!!! After my neck surgeries, the scars stuck out really bad (they are on the front of the neck) and people looked at me in horror. I finally got really honery and told them I was mugged and had my throat slit! You should have seen the reactions! I did tell them the truth then, but it was fun (sick, I know - my daughter says I'm evil).

I'll bet they were looking at how goooooood you look though, like you said - you have BOOBS!!!!!!!

I understand your worry about the cruise. I get nervous just about trying to go to the store, and after all your problems I certainly understand the hesitance to get too far from your doc. How soon is the cruise?

You definetly need to be sure that the doc on board is aware that you have MG, your problems with it, and has information about what to do. You can get on MGFA's website and request or download information for doctors. You may also want to see what your doc has to say about that trip at this time. I hope you are able to go! That would be so fun!

Take care of yourself! Make sure your PT is aware of your MG too, so they don't make you push too hard.

Loves ya!

rezmommy 05-11-2009 11:18 AM

Oh Erin, I am so happy for you .... finally some good news!

erinhermes 05-11-2009 03:57 PM

Hi Neutro!
 
Woo-hoo! Sicily! That sounds like fun!:D
And you are so right - wonderful wives do exist!
I wish EVERYONE felt as great as I do after IV IG - no idea why
they don't!:(
I wish my hubby didn't like to travel so much, but he has been through
Hell and back this last year and this means too much for me to back out
just b/c I don't like to travel!
How are you feeling? Are you strong today?
Big hugs!
Erin:D



Quote:

Originally Posted by neutro (Post 508682)
I'm glad to read that you fully benefit from your IVIG's which make you capable again to do things you were doing "before"…
I would like also to point out that, if wonderful husbands are a blessing, wonderful wives do also exist…
I think also I pretty well know how you feel about your projected cruse to Alaska, we will be flying next week to Sicily for an 8-day tour, that will be our first "big" vacation since my MG started and I am also a little nervous, will every go smoothly? I liked to travel (and still do) but I'm doing it also for my wife, same as you…
Maurice.


erinhermes 05-11-2009 04:08 PM

Hey Becky!
 
You are toooooo funny! I wish you lived closer! I think we could be the best of friends!

We have the same dark sense of humor! It is a rare and wonderful thing! Love it!

Trust me - they aren't looking @ me! Maybe my ginormous boobs or my PICC line, but not my face - not now!

The cruise is in July - perfect timing for the HOT Texas summers! I told my neuro about it, but am still scared! I should have married a neuro - but hindsight is 20/20, huh?

Hope you are having a great day!
Erin:hug:



Quote:

Originally Posted by ras1256 (Post 508695)
Erin, you are such a hoot!!! After my neck surgeries, the scars stuck out really bad (they are on the front of the neck) and people looked at me in horror. I finally got really honery and told them I was mugged and had my throat slit! You should have seen the reactions! I did tell them the truth then, but it was fun (sick, I know - my daughter says I'm evil).

I'll bet they were looking at how goooooood you look though, like you said - you have BOOBS!!!!!!!

I understand your worry about the cruise. I get nervous just about trying to go to the store, and after all your problems I certainly understand the hesitance to get too far from your doc. How soon is the cruise?

You definetly need to be sure that the doc on board is aware that you have MG, your problems with it, and has information about what to do. You can get on MGFA's website and request or download information for doctors. You may also want to see what your doc has to say about that trip at this time. I hope you are able to go! That would be so fun!

Take care of yourself! Make sure your PT is aware of your MG too, so they don't make you push too hard.

Loves ya!


ras1256 05-11-2009 07:41 PM

Well, with that cruise being in July that's a definite positive. What a great time to have an escape to a cooler climate! I sure hope it all works out and you can go COMFORTABLY.

I bet we would have a really fun time together. Wouldn't it be neat if we could all plan a place and time that we could all get to meet each other? I'm afraid that would be tough, considering how spread around the world we are, and the ups and downs that don't happen to everyone at the same time, but it sure would be fun! Maybe someday we will be able to at least get a few of us together.

My best friend lives in Amarillo, so maybe someday I'll get to take a long vacation and go tooling around Texas visiting there and you! I just need to quit having to use all my vacation time at work for stupid medical stuff!!!!

Talk to you soon!


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