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Posted: Wed Aug 05, 2009 11:48 am
by Chris55
Robbie--you are REALLY going to try "doxy" (as in an antibiotic?) When??? This is thrilling news! I just love it when people have the courage to "step outside the box". Be excited, be positive and I'll send up buckets of prayers and love for you!!! Please keep us posted...I am so excited for you!

JUST DO IT!

Posted: Wed Aug 05, 2009 11:49 am
by Chris55
P.S. ...and my offer always stands....

Posted: Wed Aug 05, 2009 3:34 pm
by robbie
just taken some of lews advice, it works good. will try the doxy chris just to see if it has any affect on me.

Posted: Wed Aug 05, 2009 4:02 pm
by patientx
Robbie,

I'm glad Lew gave you some good advice that seemed to help some, because I was trying to think of something good to write, and couldn't really come up with anything profound. Though I can't imagine what you're going through, I know it's gotta suck (ultimate understatement, I know). Hang in there. Just know that a lotta people would miss you, like all of us here at TIMS for starters.


Mike

Posted: Wed Aug 05, 2009 4:48 pm
by indigoinmotion
Robbie,
Know that you are not alone in this horrific situation... hang tough!!!

Chris55,
what is Suzy's supplement routine? Would you share??

Indigo

Posted: Wed Aug 05, 2009 5:39 pm
by catfreak
Robbie,

I am like patientx, nothing profound to say except we all care very much for you here and would miss you deeply. We are a family and sharing is always welcome.

Cat

Posted: Wed Aug 05, 2009 9:18 pm
by Billy
Robbie,

Sorry things are going bad. Lets think of the things that are going good for ya, sounds like you have a wife thats working with you (thats Fn' huge). So lets think of the things you can control. Keepin your self comfortable...I find pain killers help with my symptoms and make me feel good (sometimes great). Xanax and Ativan help with spasticity and chill me out. NEVER give up, but take advantage of the medication that is out there to make you feel good and help your symptoms. This way you feel as good as possible until something comes out in the future to help us. I don't believe in living in misery...but we have tools to help us. Live as comfortably as possible and enjoy what you can. I do think eating heathy and keeping in shape is good for us, but enjoy the hell out of life (do what you enjoy). Nothing like reading a good book on a bunch of vicodin and ativan while having some nice Port.
Live like a Rock Star, why the hell not..

Billy

Posted: Thu Aug 06, 2009 7:59 am
by Chris55
(Indigo--I will PM you about my daughter--I am sure folks on this site are tired of hearing about her!)

Robbie--a few more words for you (you have stayed on my mind). We all go down into that valley from time to time. I have always said if you are going to go down, go all the way. Get as low and sad and depressed as you can. Scream and cry and cry some more. Once you have expended all that energy, you have no where to go but up.

I know you are not in the mood for smiley faces...but they say we never really know how we effect others. You have been one of the most significant posters on this forum for me (and others, I am sure.) You have brought me peace in the midst of my anguish on many occasions. You have no idea how special you are to me.

It kills me to think you are suffering and there is really nothing I can do for YOU! Again, thank you for just being who you are and know how much we all love and genuinely care about you!

Posted: Thu Aug 06, 2009 9:14 am
by robbie
i'm sure it will pass thanks everyone, i could feel this way for years if i knew i would get better but i am just not as optomistic as you all are but belive me i wish i was.

Posted: Thu Aug 06, 2009 10:32 am
by robbie
i wil try the doxy as soon as i can and who knows.

Posted: Thu Aug 06, 2009 12:57 pm
by scoobyjude
Good luck Robbie with the doxy. I hope it can bring you some relief. I think that even those of us who try to be optimistic understand where you're at right now. I for one never understood true despair until this damned disease. It's a fight everyday to go on but I hope that you won't give up. I appreciate your honesty and candor even when it hurts to hear it. You have touched more lives than you probably realize.