Checking in...

[Guitar_grrrl]

Hi, everybody, it's been a while since I've officially checked in.  I lurk, and occasionally put in my $0.02 worth.

I'm getting my 17th Tysabri infusion this next Thursday, and, so far, so good.  The good news is, I've had no new major flares in two years, save for a couple of small ones here and there.  The bad news is, I'm progressing anyway, according to my neuro.  I had a new symptom crop up over the summer - I can no longer walk in one direction and look in another direction without falling over.  Window shopping is out of the question! lol!  My doc did a brief neuro exam, and said my bilateral Babinski reflexes are more pronounced, and he thinks I'm progressing, though slowly.

I'll take that...what else am I going to do?

In the mean time, I'm doing my darndest to live well, despite this stupid MeSsy MonSter!  I'm keeping in touch with my friends and family, I took the train to see my Dad, instead of driving (takes 6 hours either way) to save wear and tear on both my bod, and my car.  

I'm playing a couple of opening acts next weekend, though I'm not sure how many more of these I can do.  My arms and hands get too spastic after about 20 minutes.  Add the little adrenaline surge of playing in front of 50-80 people, and things misfire all over the place!  Luckily, both sets are only about 20 minutes.  I'm still trying to create music, though.  I'd like to record my new ones when I get time.

I'm eating super good, pure foods - no junk, and I'm doing my Yoga.  I've put on a few pounds, so I need to cut my portions back a bit. Babysitting my sweet little grandson (he's 15 months, now!), and napping while he naps.

Despite all the symptoms, the grinding fatigue, etc., I'm still trying to live in spite of it all!

[sllowe]

G-Girl!

Are you progressing with lesion load as well?

You stick it out, you continue on and make adjustments as you go. It's all you can do.

I couldn't be happier to read your status here today. The 02 cents and much more you give us is PRICELESS.

((((Hugs))))
shell

[Sarahsmom46]

You have come a long way lady.  The Tysabri certainly agrees with you and I'm not surprised that you found the one that works.  I wish we had a test that each of us could get at diagnosis that would tell us what drug would work best rather than do the "try this and see what happens" that we do today.  

It's ok to lurk, means you are still part of the family but just being quiet while you take care of the other things in life you need to take care of.  But, it is even better to see you back and posting.  I hope we can see some recent pics of that cutie grandbaby you are likely spoiling.  

Keeping eating healthy.  By the way, what have you changed in your diet and how has it changed your quality of life?  I am asking because now that I am in the hospital trying to recover from from several infections, my son and soon to be engaged daughter-in-law, say this is a sign that I need to change the way I eat.  The GF says she is now going to be the food police with me.  I don't want them telling me what I can eat and not eat, but I do understand their sincere concern for me so why not give it a try.  There is nothing wrong with eating healthy, right?!

Keep doing what you are doing to stay ahead of this MonSter.  

Hugs,

Julie

[anon07072023]

It's always good to see you on here.  I'm glad the Tysabri isn't giving you any problems.  Of course, you never want to hear that someone is progressing, but at least it's a slow progression.

I'm always trying to eat good.  I've been trying to pay more attention so that I eat more alkaline vs acidic foods.  

I think I'd pass out if I had to do anything in front of 50-80 people.  So...a very big kudos to you for continuing to perform.  

Hugs,
Kelly

[HVAC]

Sounds like you are doing well in spite of it all.

Hugs. Alex

[LisaJF]

YOU are an inspiration!

My god you are so active despite the physical obstacles you deal with!  Kudos to you!

I love that you're still doing your music despite the spasticity or cramps you may have!  What a woman!

Glad you came back to let us know how you're doing!

Lisa

[Lulu54]

You continue to have the positive attitude - I love it!  All the changes you have made to accomodate your MS are great - I know you will keep it up!

I'm impressed that you can keep up with your grandson.  Thats an age that takes lots of chasing.

Don't be a stranger and wait so long to jump in with your two cents.
hugs,
Lulu