How am I today? I think it's official - exacerbation. I don't think I can ignore this any longer. I see the study doc on Tuesday and let's see what his assessment is. I don't think he's going to be very happy, I know I am not.

My feet and legs hurt so bad that I can hardly walk and vicodin is just taking the edge off enough so I can at last get some sleep. I don't think I've been this bad in a very long time. It hurts to walk. This is new. Not something I have experienced before and I don't know how to handle it.

This is burning pain, not the tinglies and prickles that I have had before. Last night laying in bed, my feet were also buzzing so bad I kept looking at them wondering what was going on (like I was going to see something )

It's not that I over did on my trip, it's been coming on for about 2-3 weeks. I am sure that the travelling didn't help along with trying to get a lot of stuff done before I left.

Geez, I almost hate to post on this thread in case I mess up my karma or something!!

I am sitting in my "mother-in law's" back yard basking in the sun and checking in on everyone. We are in Ilion, NY for our last scheduled wedding/shower/graduation (since May 1st!!). My sister in law married a bluegrass musician/pilot. ( or is it a pilot/bluegrass musician? both jobs are equally hard in my book!)

The wedding was yesterday. Everything was beautiful. It was here in the yard, with flowers everywhere, loads of Italian food ( these people are IRISH!!) a bluegrass band for the reception and all of my fiance's brothers and sisters here but one ( that would be 10 out of 11) along with respective spouses and children.

We camped out under the tent and just cleared our stuff away for the day. Everyone thinks we are nuts, especially with two kids with us! I swear it was about 55 degrees at night, with air mattresses and sleeping bags it was nice and cool, but they are all acting like it's polar weather and throwing blankets at us!!!

We went up to a lovely gorge and swam today, the water WAS freezing! We are off to a barbeque in an hour or so at one of the sibling's homes.

I actually feel GREAT. I helped strike huge tents and clean up all the wedding garbage, picked up the butts on the ground, watered the flowers, helped with breakfast and on and on and on and I am not even tired!!

I think the Tysabri is starting to work it's magic!!

I do know what your experiencing, that's part of what my exacerbation are like. Have you ever tried Baclofen? When my legs and feet get like that the Baclofen was a life saver for me.....of course your doctor may have a better idea.

The buzzing/vibrations are sensory....fun aren't they....NOT.

I'm betting the amount of time you were out in the heat had alot to do with it.....heat can trigger a full blown exacerbation in many of us.

Do you know if this will affect your participation in the Tovaxin Trial?

Not sure if you care for hugs but too bad
I added a few just to see if I could tick you off

Thanks LA. I can't take Baclofen. I've had the buzzing before so it's not new, but the burning sensation is. Heat has always bothered me, but not like this time. It usually goes away once I get my core temp down so that's why I know this is a "for real" exacerbation.

As for effecting the trial? I can do steroids once during the year long trial. So, I guess I will find out what the doc says next week. If the symptoms can be treated and I don't have any new or enhancing lesions, I guess we can just let it play itself out. I don't want to do steroids. I am not doing well on them at this point anymore. I am getting an MRI on Tuesday.

Tick me off? Nevah! Not you. Thanks and back at ya

Well, I'm about to rant. I've been in a mood the last few days with my personal, digital armageddon, and trying to make a lot of plans come together. Now this! (I'm a little hormonal today also)

I am so angry right now! It rarely happens, but I got so angry today, it actually made me cry. I was watching the show about bariatric surgery candidates and there was a woman featured who felt so sorry for herself, complained about how she couldn't do this, and couldn't do that, and how unfair it is, etc. etc. etc. The more I listened to her, the more furious I got. Before anyone jumps down my throat, yes, I do know what it is like to be morbidly obese, yes, I do know how hard it is to live like that, and yes, I do know how hard it is to lose the weight. Yes, I have done it, without surgery.

All of her whining infuriated me beyond belief! How dare she sit there and claim that she is powerless when I have NO OPTION for control of this disease, NO WAY to fix it, NO ONE who can undo what it has done to me, and NO HOPE of it changing me back to who I once was!?!!! I hate the weakness in her spirit and I hate how angry I am! How dare they want me to pity them?!? She is eating upwards of 6,000 calories PER DAY (that she admits)!

I think I need another nap.

This should prove conclusively that I am a way bigger beotch that some of you may have suspected.

Nope, still don't think your a beotch.

I have a hard time with self pity for any reason, mine or someone elses. I believe very strongly in making the best of what life deals you. Some things you can change and some things you can't but you do the best you can regardless.

Both my children are ADD and I have always told them not to use the ADD as an excuse for what you can't do or things you have trouble doing.

As far as the show you watched. I'm overwieght, have struggled with my weight for most of my life but in the end it's my choice to eat unhealthy or not.

What I have found to be true most of the time.....those that "wallow" in self pity are stuck. It could be depression over whatever is going on. It can also be that they are "stuck" in a cycle that you could even find in more than one family member.

Self-pity is also a way of thinking and until a person changes the way they think it will continue.

I am doing fair today.. I hurt,, it's just b/c we camped since Thurs and I sat too long in one spot. Plus, today was a really hard day for me...
(I am not complaining) BUT, it was probably the last day I would ever be in my Mom's home.

My sis and I finished packing her things, and then I told my Sis to go home. I wanted to scrub her floors myself and just be there for a while alone.

It was soooo hard to say Good bye to everything that once was....

I felt my Mom there w/me, but the only thing wrong was.... I didn't get that physical hug when I walked out and locked the door for the last time...

I turned to look back at her home just hoping that I would see her in the doorway waving... Like I said, a very hard day.....

That is hard, dm. But, I'm pretty sure I saw Mom waving at you, and I think she said, "See you later, kiddo. I'll hit you in the head one of these days!"

If she doesn't, you and I will...k?

I saw some Toad Hollow wine at Albertsons yesterday...

Sally, I'm sorry you feel so down. Remember that we are all here for you, kiddo.

Cindy, I keep meaning to get those furniture mover things. I know they would help a lot, but I can never remember to buy them.

Mary Ann, I am so very sorry about your mom. You will get through this. My mom died five years ago, and I still miss her like crazy.