[Andrea Barnett Budin]

Hi NEDdie,

Well, first the good news. Yay for the big things like no progression.

I know how we get tired of being tired, tired of the horrid symptoms. I hate yours. Off balance for starters. Scary. Shaking hand/arm -- is that a thing a neurologist should look at? Let him figure out what no one else can. Onc says, not his department. Okay then.

I understand the very last thing we want to do is go for ANOTHER doc appointment. And/or ANOTHER test. But sounds to me, this is what you need to do.

Having discovered endocrinology, I don't know how I managed all those years without such a person in my life. Glucose, thyroid, blood tests not one of my many docs ever ever broached! And much was and continues to be discovered. Glucose tolerance test is nauseating, but it reveals stuff you may need to address. Ask a good endocrinologist.

Who tends to our adrenals?! My dghtr has a holistic chiropractor who has cured my other dghtr of vertigo, helped me with hot flashes big time, and helps my dghtr's adrenals get it together.

I know you, Denise, you won't give up. I am so sorry you barely have the energy to cope with each day let alone to schlep around to more docs, but maybe that's what you need.

This isn't your onc's bailiwick, which is great actually. So you need to find who can fix this.

Your symptoms are asking for some attention and they deserve it.

Adrenals shot? I can tell that from here, and I'm not a medical professional. Look what you've been through!!!!!

Surely lots of sleep, which repairs and renews all systems is essential!!!!! GO FOR IT!!!! No guilt involved here!!!!! Your body is screaming out for some gentle loving care. You must give it what it needs, if you want it to be good to you!

Be your own best friend! Be good to YOU! Just as you would to any and all of us!

Steroids are very helpful and/but are full of badness too. I know you're back to weaning, and I think this is a very good thing.

Bless your MRI. See parts of you are working well!

But feeling lousy all the time gets old, especially after allllll this time! You've been more than a trooper, you are a superstar, a Ninja warrior of the highest ilk.

I'm looking up and pleading, Come on. Give this extraordinary lady a break!

Neddie, try believing and rethinking about "weaning" (horrid though it is, and I've heard all your stories and swear I empathize with all my heart!) Think -- WEANING IS KEY TO GETTING BACK TO "YOU"! Or "ME". See yourself being your old healthy, happy, fun and funny self as you wean away! FEEL how it will feel. Remind your body how it feels to be healthy!!!

Do that throughout the day on a regular basis. Seeing it in vivid detail (you have the imagination to fill in the blanks here). Feel exactly how it feels. I know you can remember. Act as if you KNOW it is a done deal, you're on a path, in a process, and you can touch your desired goal NOW.


And please remember -- you can whine here all you want. You know that! And, I might add -- you are NOT weak because you whine. I find it revitalizing. Getting all that's bugging up and out, voicing it to the right people (US!). This is a very healthy and necessary part of being human! I believe in venting wholeheartedly! Don't give it a bad rap, please.

LOVE TO YOU, AS ALWAYS ((((((((((Denise)))))))))...


Andi