I start IVIG

[Sunshine]

Neuro approved me to start IVIG this morning. A 4-6 hour infusion every two weeks, then three weeks, and then every four weeks.

Side effects range from none to dizzy, fever, pain in extremities, nausea.

I vote for none,

Will take work off Minday and Tuesday. My surf buddy volunteered to take me. She is an angel...

[agate]

This is such good news! I hope you'll let us know how it goes.

They don't know yet if it will be 4 hours or more, maybe even 6 hours? I hope you'll be comfortable and able to do something for distraction.

[Lazarus]

Great! Life will be better when you are storming through the world again!

[Virginia]

BBS, your insurance was prompt - a very good thing. I hope all goes well and I really liked what Linda had to say about storming through the world.

[Catdancer]

I hope this goes well for you.

[SuzE-Q]

I hope you get a double benefit!

[Sunshine]

Thank you :) I plan to look at the infusion center today so I know what am up against re noise, crowds, ugly vs pretty surroundings, hectic vs peaceful. I went to the hospitals radiology place a few months ago and it was laid out like a jail, just awful and dehumanizing.

[SalpalSally]

Great for you BBS! Hope it works for you!

[Sunshine]

I went and looked. I think there is room for improvement to make it less institutional. Just a big open room with a bunch of lazy boys chairs and people looking forlorn and invisible. Zero privacy...At least there was no blaring TV and it wasn't freezing cold.

Am hoping the technicians and nurses are very skilled and kind :)

Beggars cannot be choosers and I am grateful this will be paid for my Medicare and BCBS supplementary insurance. Very grateful. I start my engine at 9:00 a.m. Monday for the 4-6 hour infusion.

[Virginia]

If you get bored and feel like talking you might find some interesting people to talk to.

I know you are married and not in the market, but I had a single girlfriend who was getting a Tysabri infusion. While sitting there she and a man began to talk. This was quite a number of years ago and they are still dating. Your topic of conversation would just need to be different.

Personally, I would take a book and just try to enjoy the quite time. Maybe they will let your friend who is taking you stay with you. The first time around that might serve two purposes, to occupy your time and to help with the jitters that anyone would have.

[stillstANNding]

Good luck, BBS! I wish you many years of stability.

ANN

[Sunshine]

My friend insists on staying with me. I can easily entertain myself, but admit that I am glad she is coming for the first session, as I have the jitters about it, and she can advocate for me if it makes me very sick. If it goes very well, I might go on my own next time. My surfing posse numbers 18-- with 10 regulars. They want to assign a different surfer to go each time. I am touched by their generosity, but think that if it goes well, I might like the privacy.

Basically I am a bit of a loner at times...

[SalpalSally]

I understand being a loner!!

[agate]

I can understand that too. When I'm not feeling well, I want to be alone. I don't want people seeing me be miserable. And besides I need all my energy to cope with whatever is wrong. People can be helpful but you have to interact with them, and even that takes energy.

[Sunshine]

Surfed this morning. Another surfer is threatening to join us. It is 90 minutes from her house. It could work out well, as the two of them could chat, keep each other company as well. They are both women who have enormous generous spirits.

My legs gave out today. My own fault. I went in for "just one more wave, knowing o already was having a spasticity problem before, but the rest had settled it down, I broke my own rule of, "as soon as you get any kind of cramp, get out and stay out for the day"

So, I tried to pop up on what was the best wave of the day. The midriff muscles squeezed, the toes began to stick straight out, the feet went wonky.

I was able to walk backwards out of the ocean with the board. Then put the board down. Tried to walk-- at that point is was a nerve wracking hobble.

The adorable lifeguard spotted this, picked up my board and supervised my walk to a bench. Turns out her grandpa has MS.

Does everyone have MS?

I think that statistic of there being 400,000 people in USA with MS is a gross underestimate.