That is such great news about the port or shunt! It will be such a boost not to have to endure the trauma of trying to get a good stick. It should make things a little easier. Will be praying for icknerd.

Hang in there about your sister and niece moving. My son moved to San Diego (he is a research scientist) and my daughter is in Virginia (with my precious grandsons!). It's hard but you can still stay close. It's just important to make sure and keep phone calls at the top of your priority list. Web cams are great, too.

Thinking of you and wishing you good days ahead.

Hi Erin,
Im still very up and down almost hour by hour. Im certainly not the worst Ive ever been. Its just my muscles seem to be constantly fatigued instead of me getting some respite. Mestinon seems to be only lasting around 2 hours before I can feel everything becoming sluggish again.

Ive asked my consultant for all my test results but thats yet to elicit a response.

Ive heard nothing from the 4 people I have contacted and will now ask for a direct referal. It seems so much easier in the states to see different people here everything has to be done by referal.

Take care,
Love
Rach

Thanks for the info! I think of the 2 - IV IG gives me the BOOST sooner, but the actual plasma exchange will aid in my goal of remission!

Now I just have to wait for the mountain of paperwork to be handled by my insurance company in order to have my port/shunt put in!

Devon is STILL @ my sis' house, so it has been quiet, but we are planning on going to our friend's home 2morrow night for a spirited game of cards! YAY!
I NEED nights out like that! They are so thoughtful to have us over - that way I won't worry about my home looking like a tornado just blew through!

Do you have any plans for the weekend?

Big hugs!
Erin

How are you today, hon? Are you OK? I am being a big ol' wart hog - just relaxing on the sofa, gearing up for 2morrow - Lilli and I are going to have "girl" time and then Mike and I are planning on going to play cards - YAY!

Yep, the straw thing is a real deal breaker for me - just gives me the heebie jeebies and hurts like heck! I was hoping that my neuro would OK someone coming to our home to do my treatments, but he said there isn't anyone in own that he truly trusts with my health, so I'll have it done @ Cancer Care Centers and SLEEP wth my hubby! YAY!

I have met sooo many amazing people @ CCC! They are truly amazing! I love being around all of their positive energy! IT makes me appreciate EVERYTHING/EVERYONE even more!

Have a great weekend!
Erin

HEy there - movie star! How are you? Are you FINALLY feeling better? Have you gotten ANY rain there? It is truly miserable here in SA. We NEED rain right now!

I've got big bowls out for all of the critters, but am thinking about buying some troughs for them - I can't stand the thought of ANYTHING being hungry or thirsty!

I am being a bum today - it feels glorious! 2morrow will be a busy day, so I am trying to rest up NOW!

Big hugs!
Erin

Hey Shar! I am sooooo excited about the port/shunt! It will make my life so much easier!

I'm still kind of in shock about Lilli, is that nuts?It's like I'm stuck in the denial/anger/depression cycle. I still cry every night - just thinking about my beautiful baby girl going away, but can't control it, so I guess I'll have to go with it!

I'm already planning on writing her EVERY week, as well as sending videos and buying her a locket with our pic inside...........

Hope you are feeling GREAT today!
Erin

Hey sweetie! I know what you mean -I'm taking my mestinon every 2 hours instead of 4 right now, but this heat is wearing me out! I thought I'd have more ENERGY @ 40 mgs of pred, but not quite yet!

Hope you feel better soon!

love,
Erin

Erin,
I'm just trying to stay out of the heat. I have a busy weekend ahead with some heat involved, so I'm trying to conserve today. I've been doing real well since the IVIG last week, but just some twitching in the eyes which is driving me crazy....other than that...strength is good. Take care and stay cool!!
Hugs,
Simon