Yout doc will know about the heart pillow. Trust us, you'll want it. Without it coughing is just too painful!
I do know exactly what you are going through. For a while there, a gallon of milk was too heavy for me. It was awful!!!!
I think my doc told me I had to wait 6 weeks before drving again. You never know how quickly YOU'LL recover - it may only be a couple of weeks
before you are able to drive!
Don't try and lift the baby. You may drop her. I'm not trying to be a downer, but you have to rest as much as possible until your meds are worked out and you have your thymectomy.I learned that the hard way.
I know other people HATE steroids, but I love them! Granted, I am a lot heavier than I was, but I can do things now, so for me, they are great!
I am taking 20 mgs a day + 3-5 60 mg mestinon + the "big boy" 180 at night. Today I've only needed 2 thus far and feel like climbing a mountain!
The double vision is awful I know, but hopefully you'll be out and about like you were before MG.
My scar is almost gone! I'd take a pic, but I don' think anyone wants to see it (it is on my breastbone). In fact, one of my docs thought that I had it for a while, but I had surgery in April.
Why aren't you on steroids all the time? I don't get that! Granted they will make you gain weight, but they do make all of the difference in the world......
Have you had IV IG yet? Plasmaphoresis? I've had them both, and much perfer the IV IG! Granted, I am truly afraid of needles and the thought of one in my jugular was just too much for me to handle, but I did it anyway b/c my neuro told me I needed to.
My neuro called to check up on me today and was so wonderful! I am so blessed to have such a wonderful caring dr. He told me "baby, this is as good as it gets" and I should relax and enjoy my trip to Jamaica this weekend. I told him I'd been @ work decorating my home for the holidays and he just laughed and laughed! Usually he tells me to take it easy, but he knows how great I feel after my last round of IV IG and told me to enjoy it!!!
IV IG doesn't always agree with everyone, so you may want to ask your doc about it. For me, it has been GREAT (minus the PICC lines), but others haven;t been quite so lucky! Most of us feel AMAZING after it for months! It is definitely worth looking in to.
Gotta finish up my home! Happy Holidays! I look forward to hearing again from you!
Hang in there!
Erin
Quote:
Originally Posted by USMC_with_MG
Thanks for all of the great advice. I don't know what just happened to the post I just typed up, but let me try again. I have never heard of a heart pillow, but I already have a BedLounger pillow with arms, so I'll be able to sleep sitting up with it. How long does it usually take before you can drive a car again? I have a 4 year old daughter, 6 month old daughter, and my wife of 17 years. I usually take my kids to and from daycare, so I've been concerned when I'll be able to lift the baby again. Here is my story...I've been in the Marine Corps for 21.5 years and first developed MG in 2000. I'd always been given prednisone, and I would gain 20 pounds from it, then spend the rest of the year trying to get my weight back to Marine Corps standards. I'm 6'2" and 235lbs. I last took prednisone in July and in late August, early September, my symptoms came back worse than ever. Usually I would only have two mild bouts of MG per year, but its is more frequent now. This time I'm having severe muscle weakness and constant double vision. I can barely work, walk, do housework, lift the baby, play with kids, everything is rough. I'm taking 60mg mestinon, 2-3 at a time every 2 to 4 hours. Its like taking baby tylenol for me--not doing a darn thing. I have a new neuro now and he recommends the partial sternotomy versus going in through the neck. My wife is really concerned about my recovery and the scarring.
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