Hi. Just HI.

Hi from me, too, and a big hug. I agree with your assessment: control issues are the biggest deal for most people.

Here's to fresh-smelling-ness everywhere!! :)

P.S. My dog would totally give you kisses if you were here. Tell Biscuit he has to do that every day. (Unless you'd rather he not....)

I love you, Susie. And I'm so sorry you're overwhelmed. And DAMMITALLTOHELL at the news. That's just so farging frustrating. Do I dare ask ... what's next?

You are, as always, in my thoughts and prayers.

Oh Susie. If anyone is entitled to feel overwhelmed right now, it's certainly got to be you. {{{ }}}

So sorry to hear about the news, Susie. I hope you get some relief letting it out here. My sister has a WTF issue as well. Many doctors, no answers. We're praying for you. By the way, what's the liquid at the bottom of the sticks? Scented oil?

oh, susie. I don't know what to say. Feeling the air go out of me when I read that about WTF, I can't even imagine how you felt. I'm emailing you the hotel I'm staying at at the beach. Come with me and let's "whelm" those toes of yours with some sand and sea. I've got suncreen AND bugspray.

Your response to the cocktail inquirers is really interesting...Buddhism's basic tenet is that people suffer. And they suffer precisely because they want things, people, "reality" to be other than what it is.

More hugs.

ugh - Sorry to hear it about the diagnosis (or lack thereof). Screwed up that knowing you have some untreatable condition is better than not knowing. The doc's still on the ball, right?

Oh, Susie. I swear if I could travel -- I would come see you. I would make a day where we could forget everything, have fun, feel good. We would stop at Starbuck's first of course.

What about those tests that showed all that excess Ti and what was the other thing? Arsenic? Is this doc sure about this? What is she going to do now? This is not fair. You don't think she would just say this because she doesn't know of any treatment, do you?

..status on WTF really sux..easy to see why you are overwhelmed..

You will remain in my prayers.

I like the way you freshen...that little diddy is aesthetically pleasing...what's the scent?

xoxoxo

Well DAMMIT! That sucks. I mean I am and I'm not. It's not like I wanted you to have Ti poisoning but I wanted you to have an answer.

I'm so sorry you're overwhelmed. I think a lesser person would have started whining LONG ago.

william, like H.I. McDunnough? I know that guy ;)

lawyerchik, thanks for the hug. I'll take a dog kiss if it's a GOOD dog. I have enough of the other kind.

ladybug, thanks, honey. I love you, too. I have more docs to see, and toxicdoc is going to repeat the tests in a couple of weeks.

sassy, thanks for the hugs. They help.

jen, thanks for your prayers, and my best to your sister. Yes, it's scented oil at the bottom of the bottle.

htgt, thank you again for the invite. This past year of the weird, frightening symptoms, has been a real test of trying to remain content, trying to want what I have. I don't want this. Am not content with it. I suppose theoretically, if I could learn to want choking, muscle twitching, etc., I'd be happy as a fucking clam. Not yet. I'll keep you posted ;)

mrtl, she says that she will keep trying to help me. I hope that's true.

lynn, she is going to retest. She has said from the beginning that she didn't know what to do about it, but that doesn't surprise me; people aren't "supposed" to be poisoned by Ti. I'm sure if she believed that's what I had, she'd find something to try, even if it were based on the treatment for some other kind of metal poisoning.

elizabeth, yea, I like diffusers better than candles. I like candles, but diffusers, you can forget about, no fire worries if you go to sleep or whatever. This one is honeysuckle. Thank you for your prayers.

soozieq, I know; it's tough to even know what to hope for. 'Cept to just get better. Get well. That would be good. Some days I am a lesser person. Like today. Some days I do better.

Oh crap. I'm sorry. The unknown sucks. Hugs.

{{{{{Susie}}}}}

Oh Susie. F that they still don't know what is causing the WTF. Also F that I adore your house smelly idea but took one look and pictured it in my house. 3 little boys with eyeballs on the end of glorious smelling sticks and oil all over floor. One day I shall be able to have beautiful, ornate and potentially messy/dangerous things in my home. I suspect though, when that day arrives I shall weep at the knowledge that little boys are grown and that will be a sad day.No pleasing some people is there?
Damn again about the still not knowing WTF WTF is.

I've been trying to write a comment since last night and every time I get started, the curse words take over:

I *hate* those frangrance diffuser sticks!

Ok, Just kidding. I am just so angry about this whole WTF thing. THIS IS NOT FAIR. I would not normally ever say that. I probably haven't ever said it in my life.

'...the reality that [I] can't make [WTF Disease] behave the way [I] want [it] to. '

I want to help you get back to whelm.

Could you use a flashlight? Flares so you could tell which was was up at least? Or fireworks! Some swimmies, or maybe a floating chaise lounge? Dolphins could come and push you to the surface...

Where are the fucking dolphins?

((((HUGS))))

Come to Dallas. We can... I dunno... Do SOMETHING. Oh, we can go to Northpark Mall and make fun of the native Dallasites?

I need to get one of those smelly stick things.

I'm sorry for you, but what's more, with my personality, I want to help in any way.

I have a friend who came within 6 months of dying from a rare auto-immune disease that no one could diagnose. She's alive and healthy today. I'd love to tell you her story if you are interested, maybe her approach could help you.

Email me if you are: dlhunt07@yahoo.com

Susie I'm so sorry that you don't have a diagnosis and treatment plan yet. The ups and downs of hopes and hopes and trying to figure out what to hope for next. Have they figured out how to correct your vitamin D levels yet? and/or is that deficiency possibly caused by or affecting whatever WTF is? I'll say an extra prayer that of all the medical minds involved in your care, JUST ONE will soon have an AHA moment. Maybe that means praying for divine inspiration. Hope it happens soon!!!!!!!!!

I wish I could change your overwhelm to underwhelm, or at least, as you say, just plain whelm. Like everyone else, I just don't know what to say, except to hang in there, keep plugging away at it, keep getting more and more and more opinions. The Ti thing might have been a good lead, and it might still be one. I am convinced that you will find out, from your own insistence, what WTF is before the doctors do. But the toxicdoc is at least still trying, and that counts for something, too.

Hang in there, sweetie. And if you get bored, there's a question waiting for you over at my place. :-)

I was just wondering about the toxicdoc's news this morning. I'm so sorry to read this, but I'm glad that she's still trying to help.

My stepdad had another version of WTF for six years, and my (Ph.D. in neurobiology) friend did a little research after talking with my mom at my party. She emailed him with a potential diagnosis, and damn if she wasn't right! She diagnosed long-distance in a few hours' time what the Mayo Clinic docs had not in the six years they'd been trying. So keep telling your story--SOMEONE will help you figure this out.

Or maybe I should hook you up with my friend . . . .

Do you know how hard it is to give assvice to a therapist? I'm not trained in what you do, so I always wonder who am I to say anything?

I suppose I'm happy that it's not something that there is no cure for. I see promise in that. I'm not happy that it has no name, but maybe I'm holding out on the hope that could disappear just as suddenly as it appeared.

Your soul is torn and tattered. That's what I see in your words. Control freaks like me need certainty. And for both of us right now, there is a whole hell of a lot of uncertainty. Today, I'll focus on what I can control and let God have the rest. It is too much for me to handle. That is the best way to nourish your soul. Let it go and live for today. All we can do is work on the certainties of today. And for me that means a shitload of packing.

(I can't help but see a little bit of Alcoholics Anonymous teachings in what I just wrote. I grew up attending meetings with my parents. It's too bad because I may just be driven to drink after all this is over.)

Oh, Susie... sonofamotherlessgoat, that kind of news just plain sucks donkey balls.

I've been back a couple of times to comment, and I wish I had something inspirational to write, something that would make you feel a lot better... all I have is Don't lose hope, Soos... just don't. Even if some days you're holding on by a very thin thread, don't let go.

You're still in my thoughts and prayers. Love you muchly.

Ooooh, I'm told by those who know me well that I can be very VERY good at whelming people. Pick ME!!!!

*sigh* Words are just inadequate little pests when there's nothing to say, aren't they? Love you, my sister. You are in my prayers. Because for you? I really do pray.

Susie, I don't know what to say. I'm angry, sad, hurt that my sister doesn't have an answer yet. I wish I could work a miracle for you. I guess I'll just have to keep praying for one for you.

Holding you so tightly right now. Love you, sis.

kranki, yes; some knowns would suck worse than the unknown. That's my solace for now. At least I don't have one of those knowns, or if I do, I don't know it.

traci, thanks, honey. Backatcha.

t.o.m., you're right; I would guess that diffusers and little boys -- and cats, maybe -- don't mix well.

she, you cracked me up, hatin' on the diffusers :D Like you, I don't think I have ever said that life isn't fair. I've never had any expectation that it would be. For many reasons. I'm OK with that. I'd just like to not feel as miserable. And to not fear that if someone just knew what this was, they could stop it from getting worse, or stop it before irreparable harm is done. I don't even know that this IS unfair; not having designed the whole karmic economy. I could go on, but I'd give everyone a headache.
Hey, I HAVE dolphins. Floating, light-up dolphins from U.S. Toy Co. We got them for LG's graduation pool party. We used them for dolphin races -- everyone tried to push their dolphin across the pool using only their noses. The girls' noses that is. Brigitte cheated, using her chest. Talk about unfair.

kami, aw, thanks for the invite. I do have some relatives out that way; I'll get there some time. Those diffusers can be absurdly expensive. Home Goods is a good, cheap place to get them. I don't know why oil and a bottle and some sticks should be expensive, but in some stores they are.

redheadmommy, I'd love to hear her story. Thank you, I'll be emailing.

ortizzle, I'll keep trying. Some days, energy wanes. Wanes, that's right, right? I confuse waxing and waning. Wax on, wax off...

shawkey, I'll take the hook-up. I think about trying the Mayo clinic or the Cleveland Clinic. I THOUGHT Hopkins people would be able to come up with something. I think now, it's going to take one doc who has had the odd experience of seeing such a condition before. He or she is out there; I hope I'm getting closer.

umutha, like you, I hope it will disappear. And I do believe that can happen. God could say the word and this would be done. You are right about my soul. As for control, that is certainly a part of my make-up. My whole life has been learning to give up the illusion that I have any control. I keep thinking I've thoroughly learned that lesson. God appears to think otherwise. I'm still in school, apparently.
Now, are you recommending that I take to drinkin'? My FIL recommends that course of action frequently. I'm giving it serious consideration.

ck, you CPS, you. Sonofamotherlessgoat is pretty inspirational ;)

eclectic, it whelms me that you really do pray for me. xxx

squirl, thanks for the holding, and the praying. Both help. xxx

Like a couple of the others I have been at a loss for words and keep trying to think of something helpful or comforting to say. I can only go back to something I've said before: that is sucks and that we all love you are and here for you. Not particularly helpful but it is true. Fingers crossed that toxic doc can find something or that someone else comes up with an answer.

Hi Susie -- I have to say it again. Other people would have given up and cried and retired to the sofa permanently by now. You haven't--you keep going and finding new docs and trying to face "things"... which makes me think, dear, that there's something you're afraid to think and it's exacerbating the fear and sadness. (I am in this club.) I am also in the club of "okay, so I can't control life" is settled in my mind in theory, but when reality comes and bangs on the door to prove that I can't control it -- I'm not happy.

Your new doctor sounds very good. Trust her and keep trying. And flipping those sticks!

I swear, I am going to get you to Colorado yet. We will have Dr. John and his team fix you right up.

I still want to have a blogger party in AZ and we are waiting for you to get well. Then we will, before this year is over.

My word verification is apnod ~ so you best be nodding about that party.

Very appropriate that whelm has helm in it, because not being at the helm is what overwhelms me.

I picture you steering a ship in a vicious storm. You're clinging to the round wooden steering wheel thing that they always show in movies. Sometimes it spins so fast, from the wind, that you're knocked to the floor of the boat. But you keep getting back up, giving it your full strength and determination.

There's a whole crew behind you - family and friends and doctors. Jif and the doctors take turns at the wheel. The rest of us bail water or just shout support - whatever we can do.

Every now and then you think you see the shore, and it's so frustrating and disappointing when it turns out not to be.

You're dripping wet and feel like you're drowning, but the ship is still slicing through the water, moving forward. And although you don't know exactly where you're headed, you (and all of us) have faith that eventually the path you're on will get you out of this storm.

platy, your coming around helps. It really does. xxx

daphne, something I'm afraid to think? I don't understand. I think.

nina, yes, I am apnodding about the party :) I wish. I hope.

kalki, now I just wanna call you "Little Buddy." Wanna go on a three hour tour? a three hour tour ;)

Susie - I keep coming back hoping that the WTF is no longer WTF. I keep hoping that WTF is eviscerated and a "whew, glad that's over" is posted here.

Sending you anonymous blog love. (And loving Kalki's analogy, too!)

thanks, ~kabe, I look forward to doing such a post, too.