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Old 05-10-2009, 11:10 PM #1
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Smile 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?

Erin



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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!!! Hope it all works out.
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Old 05-11-2009, 09:51 AM #2
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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…
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Old 05-11-2009, 10:20 AM #3
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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!
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Old 05-11-2009, 11:18 AM #4
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Oh Erin, I am so happy for you .... finally some good news!
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"Thanks for this!" says:
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Old 05-11-2009, 04:08 PM #5
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Heart 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



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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!
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Old 05-11-2009, 07:41 PM #6
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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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Old 05-09-2009, 04:13 PM #7
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A whole new wardrobe! Woohoo......that was sooo sweet. My husband brought home some beautiful roses and cooked steaks last night....I had a hard time cutting and chewing them...but they tasted awesome!!!!

I hope you get to feeling better now!

Steph



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Hello all! Just finished with my monthly IV IG - next month should be the last one for a while!

My neuro also reduced my pred to 30 - so hopefully I will be a little less "puffy" and be able to lose some weight. On the positive side, my DH bought me a whole new wardrobe - see? There is some good to come out of all of this!

All of my blood work came back GREAT - I guess all of those supplements are really doing there stuff! My neuro did reduce my IV IG to 150 mL an hour - down from 360, just in case - doesn't want me to have kidney damage! I just laughed! I am a walking pharmacy as it is!

Also got the results back from my MRI - bulging discs are the culprit - who knew they could hurt that much? He scheduled physical therapy for me, but until then I am going to take Becky's advise and ice down and then heat my back and take my pain meds............I refuse to be in pain in addition to everything else.

I was able to go shopping last night for gift bags for all of my nurses. They have been so kind and loving to me!

I am going to try and get disability - met a really sweet girl with Lupus who receives it and it has really helped her out.......she has a great lawyer!

I also have an appt with an oral surgeon on the 19th to discuss implants.

Great day, but boy am I tired! I am going to help my hubby with his radio show 2morrow and then be a BUM all weekend! It is going to be GREAT!

Take care!
Erin



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Old 05-09-2009, 10:47 PM #8
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Teeth Hey Steph!

Hey there! Great day today! It was hot, but I was able to get out of the house for a while and help my hubby! YAY!

We are so lucky to have such amazing husbands! What a blessing!

Hope you are feeling great today!

Big hugs!
Erin
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A whole new wardrobe! Woohoo......that was sooo sweet. My husband brought home some beautiful roses and cooked steaks last night....I had a hard time cutting and chewing them...but they tasted awesome!!!!

I hope you get to feeling better now!

Steph
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Old 05-09-2009, 11:05 PM #9
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Yes, good husbands are a blessing. He has been so patient with me...especially with all of this mess. God sent me a few wonderful angels to watch over me... (my mom and my husband)!

Today is a much better day...looking forward to tomorrow...since so far this week...everyday has been better than the last....I will be glad when headache is completely gone!

Steph




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Hey there! Great day today! It was hot, but I was able to get out of the house for a while and help my hubby! YAY!

We are so lucky to have such amazing husbands! What a blessing!

Hope you are feeling great today!

Big hugs!
Erin
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Old 05-14-2009, 10:52 AM #10
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I am very curious about your efforts to get on disability. It is looking more and more like I might have to go that route. Anything you can tell me would be a big help.
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