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A few questions......
Hello all! Went to see Dr. I on Wednesday - he thinks @ this point the amount of prednisone I'm on is hurting more than it is helping, so I'm going back to 40/20 alternate days versus 60/40......I will also be getting IV IG or the other every 3 weeks until I a weaned down to 20 mgs. of prednisone - YAY!
I won't lie. If I HADN'T had the IV IG before my last trip I don't know how I would have made it. For ME IV IG is great stuff!:D Are any of you on the same type program? 5 days of IV IG or the other every 3 weeks? How do you FEEL? Also, I am making small gift bags for the other neuro patients.I was thinking about going to the Dollar store and buying some Sudoku and crosswords, as well as cards, dice, and coffee mugs with chocolate inside. I'm also making some small homemade pillows. Can you think of ANYTHING I can add? We all know how boring being @ the hospital can be and some of those people are all alone....it makes me so sad!:( Any ideas? Any advice would be appreciated! Erin:D |
Erin, you are such a great person! I would never even think of bringing gifts for other people when I go to the doctor.
One idea is to take small pieces of paper with nice words on them, roll up like a scroll and tie a ribbon around it. My daughter gives me homemade cards like this, about 3 inches long rolled up to the diameter of a pencil. It is fun to untie and read. Next time I am alone waiting for my turn with the doctor I will imagine you there giving out gift bags. I will be smiling with no apparent reason why. How fun. |
Hi Desertflower!
Hey hon! Thanks for the kind words! I just KNOW how boring being stuck in the hospital can be.......a real downer! :(
What a GREAT idea! I love it!:D I bought some really neat parchment paper and can print out the words if my hands are too shaky!:D LOL! How are YOU feeling today? Love, Erin:hug: Quote:
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Only you Erin, I bet the hospital and Dr staff smile when they know you are coming because your attitude is so inspiring! :yahoo: I like DesertFlowers idea. Mints or hard candies to suck on is always a good idea because that way if they have weak facial muscles they can just let the candy "melt" and the flavor last a long time.
As for the IVIG and Pred.. I can't take pred as I react to badly to it and I am afraid to try the IVIG but if I go into a crisis I will try it :) Now when I did take Pred many years ago, I was on 60 everyday for a year and then weaned ogg it for a year, then remission :yahoo: Good luck my MG friend :) |
Hi Joanmarie!
Hi Joanmarie! They smile cuz' I bring them pizza! LOL! Actually I am just so grateful to the whole staff @ the Methodist
I love your ideas as well! They are great!:D Do you mind my asking why you are afraid of IV IG? Have you has a bad experience? For ME it has truly been GREAT! I don't even have to premed b/4 - just drink lots of fluids and I feel 100% It even gives the appearance of a mini eye job! LOL! As for the pred., I am so happy to be going down! My entire body is swollen and it is starting to give me major anxiety......Don't get me wrong, I'm still VERY grateful for it, I just need a break for a while!:D 40/20 should do the trick. I may be a little weaker for a while, but I am blessed enough to not HAVE to work @ this point, so I can stay on the sofa all day if need be! How are you doing? THank you for the ideas! I really appreciate them! love, Erin:hug: Quote:
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Wow Erin,
You are really amazing, thinking of everyone else in hospital!!!! In answer to you question, I get ivig, only when I crash, because in my nuero's words "IVIG is very expensive and hard to get hold of, and other people need it as well", end of story, I'm not bad enough to warrrant ivig unless I crash ie, double vision weakness etc etc, which is good I think cos its such a long and stressful day for me. Kate |
Hi Kate!
Hey hon! :hug:
How are you feeling? I am soooo looking forward to the next round of IV IG! I guess the dr's dx of acute MG is the reason I'm going to have it so often - I'm "lucky" that way:rolleyes: Funny. I don't feel lucky..... Maybe I'm in denial, but I don 't feel like I have acute MG........THe one thing I do know is how good everyone tells me I look after I have it done - guess I must look like hell before!LOL! We are FINALLY getting some cooler weather here! I cannot wait for our cold weather! You should have seen it in Allegany! It wwas in the 40's and I was outside wearing the thinnest pj's I own and no shoes - I could feel my face going down......Happiness is cool weather! Hope this finds you strong and happy! Love, Erin Quote:
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Erin,
The reason I am afraid to try IVIG is because I suffer bad reactions from anything I take. And well to be honest here, I am so tired of the side effects of things I would rather be weak from the MG only, at least than I know what the weakness is from and I can relax, but not knowing what a medication will do to me, well I just get to stressed out. |
When you've been on Pred for awhile and do that much of an increase, you can have signs of an adrenal crisis. Please be careful. Look for signs of sweating, feeling really out of it or really tired, blood pressure dropping, etc. I hope the decrease goes well. If not, you need to talk to your doc about going down more slowly.
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Erin... that is a great thing to do for other patients.
You are a really generous soul! |
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