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Friday, September 01, 2006

What I Don't Say

Just after I hang up from the doc, after I've told him that my fingers are curving into claws, and my legs don't work, and my tongue doesn't want to make words, and I'm really scared, and after he says to me, "This sounds like anxiety . . . are you anxious?" and after I compose myself and get my mind around the fact that, yes, this allegedly brilliant man really did just say that to me, and after I congratulate myself on not screaming at him, in my best hoarse, slurring, voice, "If your hands and legs and tongue wouldn't work, wouldn't you be fucking anxious?", I walk through the kitchen and my knee buckles and my hip slides into that odd, every-few-steps dance that Jif isn't used to, and that neither of us wants to get used to, and I see the concern in his eyes, and what I say is, "Aw, don't mind me, that's just my anxiety acting up!" And we hug and laugh a tiny little bit.

What I don't say, as I'm lying in bed with my back to him, and he's rubbing my back with those firm, medium-sized circles that I like so much . . . what I keep thinking, but what I don't say, is "If the time ever comes that I can't tell you, please remember how much I like this. And do it for me. Sometimes." But I don't say that.

Not yet.

Please, God, not ever.


Bad, sad day, ratsasstafarians. No bad news, no good news. Just a tough day. I'll snap out of it. Just needed to vent a little. Forgive the harshing of the mellow. xoxoxox I debated about closing comments, because I really am just venting, but then I didn't want to vent and leave you no outlet for venting along . . . so of course, I'd love your comments. I just ask that you not speculate about what "it" could be, here. Email me if you feel the need to do that. Thank you for coming around. You really have NO IDEA . . . you're a blessing.

41 heads are better than one . . .

Blogger Lynn said...

Susie, I'm so sorry this is happening. A couple of days ago I felt desperate, too. Though our problems are different, I know what it's like to feel your hope slipping away. Don't let go of it, Susie. DON'T LET GO! We're all with you and we love you!

Blogger Lynn said...

Susie, you strike as a wise builder...

"Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock."

Blogger Susie said...

Aw, lynn. I won't let go. Fact is, I can't let go of much. One of the charming features of WTF Disease is the "freezing" of my hands in a contracted position after I've grasped something. So, hope will have a helluva time getting away from me; I'm holding on. Thank you, honey. You hold on, too.

My verification word is xbadfold. Yes, x on all the bad folds.

Blogger Susie said...

We were posting at the same time. I love that scripture, and even remember the song from Sunday School. Thanks for the reminder.

Blogger Circus Kelli said...

Sweetie, I have no words of wisdom. I have nothing funny to say just now. I can only tell you how much I love you, love your sense of humor and spirit.

Hugs, darlin.

Oh. My. Gock, Susie. I lug you lots. Vent away, you deserve it more than anyone.

I'm here if you need me.

Blogger Mr. Bloggerific Himself said...

I have an unfinished poem that I'd like to quote part of right here in this little box. Maybe I won't finish it at all. Why not? We're all a work in progress and the words and lines continue to add up and change. The very definition of who we are is continuously under revision.

"We’re unable to surrender
And give up control
Our days filled with agenda
And neglect the containers of soul"

Blogger Sometimes Saintly Nick said...

Darlin’ Susie, even though I don’t get around the blogs as much as I once did, YOU remain in my thoughts and daily prayers.

There is nothing I can tell you about anxiety that you don’t already know, so I won’t go into to that. I’m sure you also know Reinhold Niebuhr’s “serenity prayer” that AA picked up, so I’ll not post that either, although I will admit that I tend to forget it when pain, trauma, and anxiety strike me.

What I will write is how important you are to me and to many others. We are with you, we are concerned about you, and most of all, we love you. I send you my presence and love and prayers—and this small Celtic blessing:

A sunbeam to warm you,
Good luck to charm you.
A Sheltering angel,
So nothing can harm you,
Laughter to cheer you,
Faithful friends near you,
And whenever you pray,
Heaven to hear you.

Blogger Lynn said...

Susie, I can't let go of much either. We seem to have the same manifestation showing up in two separate conditions (and body parts) - your hands and my brain! The 'freeze factor' is very upsetting. I'm looking forward to the 'thaw' for both of us. What do you say we have a party when that day comes?

Kiss your VBD for me, ok?

Blogger Ern said...

If you can't vent your frustration here, to friends, then where? You're in my thoughts and prayers every day.

"If one falls down, [her] friend[s] can help [her] up....Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken."

Blogger Von Krankipantzen said...

What you are going through sucks with suckage beyond measure. Vent away. Scream away. We are here for you.


Blogger Bucky Four-Eyes said...

Hey, I vent about LOTS less than this.

And you have not harshed my mellow. I can do that all by myself. :)

Please tell Jif he is our proxy hugger, and must now give you long-distance hugs from all of us. How he chooses to interpret on a hug-by-hug basis is strictly his choice.

Anonymous M&Co. said...

I'm sorry this was a tough day.

Anonymous RzDrms said...

after reading this earlier today, i felt like i just wanted to punch something. therefore, please send me the name of the doc to whom you spoke....

susie, you know how spiritual i am. i am taking some of your pain onto myself each time you write; write more and i will take more of it gladly (really). just like i wrote to you in an e-mail, i pray this will all end exactly like the booty flies diagnosis did: "The gathered tears spill out and run earward, and I shake with laughter, and then I shout it, loudly and happily, 'Thank you!! Thank you!!'" i cannot wait to thank God, out loud, with tears on my cheeks, for your diagnosis and subsequent recovery.

Blogger Andrea said...

Aw, Susie, honey, please don't even think about closing comments and preventing us from reaching out to you! You were afraid it would look like you were whining and begging for consolation, maybe? Please don't think that! All of us want to know how you're doing so we CAN offer encouragement and comfort.

We heart you, Susie.

Blogger MrsDoF said...

Thinking of You!

meanwhile, reading Chapter 15 over at Nilbo's place....

so you'll have to forgive me just a little 'cause I'm smiling now.

Blogger Karen said...

You know, I was just searching for a word. I was trying to figure out an appropriate verb for what to do for maintenance on the rat's ass I keep in a safe place for you. Polishing didn't seem quite right. Stroking seemed... inappropriate. Brushing? Fluffing? Dusting?

Well, it may be a little (dare I say) ratty, but you can be sure I still give a rat's ass for Susie.


Blogger Candace said...

I know you don't need sympathy right now, but I really am sorry that you're going through all of this.

Don't ever be sorry for venting. For crying out loud, you have SUCH a reason to vent.

I hope you and Jif and LG are handling things as best you can.

Blogger Squirl said...

Darn, I'm going to be out of the blogworld off and on a lot this weekend. But you will never be out of my thoughts!

Love and hugs and love and hugs and love and hugs and

Do the love and hugs ever stop?


Blogger eclectic said...

If only you could see my nine-year-old dancing and rocking out to that song "Had a Bad Day" by someone, I don't know who, it would most certainly make you laugh! I want to sit nearby and be with you. I promise not to talk. (And from a lawyer, that's quite a promise...!) Betrayal is always difficult, but moreso, I suspect, when the betrayer is your very own body. Vent away -- like Bucky says, I vent for far lesser reasons nearly every day. Love you. Really.

Anonymous Anonymous said...

Oh Susie, my dear. My eyes are weepy at the moment and my heart is full...of hope, of love, of appreciation...for you. I am so sorry this is so very difficult for you. It must be so scary and I know when I get scared, I get pissed off too. Please just know I think of you every day...more than once even! I'm totally sucking at communicating lately...the words are true just the same. {{{{{Susie}}}}}

Blogger Nilbo said...

Oh, for Chrissake ... somebody said "Go see Susie ..." then something that sounded like you were serving toasted marshmallows. "harsh mellow" ... dammit.

In fact, somebody DID say "Go see Susie". Not that they had to, of course. But we talk amongst ourselves, and we rack our brains trying to think of ways to offer you a glimmer of light in this bleak time.

That's all we can do, and we all wish it were more because we're in agony with you, Susie. Any one of us would take a share of the physical pain that you are enduring, were that possible. But you and we know it's not possible, so all we can offer is the comfort of our support.

I know you don't see it as "cold comfort" - it feels that way to us, sometimes, but you've said - and I believe you - that it helps. So it's the best we can do, and would that we were all lucky enough to have so many people doing their best for us.

I don't envy you the pain and fear you're living in right now, my darling Susie. It breaks my heart that you have to endure it.

But I do envy you the spirit and warmth and love you exude that has drawn to many people to you and pulled from them the very best they have to offer.

Give me that, and toasted marshmallows, and I'd say my life would be well lived.

Oh, and Bucky and Jess. On second thought, I'll trade the marshmallows for a night with Bucky and Jess.

Anonymous trophywife said...

Susie, I don't think I've posted before but I do also give a rat's ass about you and keep you in my prayers. I hope that my post with the others today will give you a glimpse of the lives on the internets that you've touched with your kindness, humor and faith.
I know God has great plans for you and you will get through this WTF disease. Since you're not having problems hanging on to things these days, I'll just say keep up your faith. You'll get through this!

Blogger Jim said...

What lynn said. x2

Blogger Nina said...

Well darling Susie, we both have had bad days this week. I put off returning your email thinking that I needed to be in a better frame of mind. So that I would be nothing but upbeat for you. What was I Thinking?? Know that I may not completely understand all you have been and are going through. But I know a little bit about not being well and fatigue has just kicked my ass this last week and left me in tears and frustration. So I understand a bit and I heart you big time.

Blogger The other me said...

This is just horrible for you..and sometimes the people we want to say the right things, darn well go and say the very most wrong things don't they? The being anxios thing...when I was very worried and sad and anxious I lost the sight in one eye and my left leg was useless. All kinds of weird thinga happen ..this whole WTF deal must be making you go near crazy with worry. I so hope that SOMEONE soon looks at you and your remarkable brain and just KNOWS what it is.That they can fix it and WTF disease goes the F away.

Blogger ieatcrayonz said...

God Bless you, woman. You are too strong to let this control your life. You will be correctly diagnosed. You will get better. I have faith...in Him, in you, in us.

Blogger Annejelynn said...

we and the blogosphere are here for the purpose of self-expression, and that includes axercises in sharing, supporting, uplifting, caring, loving AND VENTING!

Blogger Lynn said...

Susie, I just came from checking on my old house across town. I didn't go in, but I like to drive by and check on the lawn. I noticed something good and it made me think of you. I used to keep wildflowers in the big brick planter out front, but I haven't taken care of them in months. These 'wildflowers' required alot of care because they are not suited to this zone. The last time I noticed, they looked to be in pretty bad shape. I haven't done a thing to care for them but they have made an astounding come-back. In Florida, no less (think nuclear inferno)! They are healthy and beautiful. These flowers remind me of you.

Blogger Pissy Britches said...

You my dear are a bigger blessing.
Sorry you are having a sad day..
This too shall pass.
We heart you.

Anonymous Anonymous said...

I got a new t-shirt today and everytime I wear it I will think of you...why is that you may ask? Well this is what it says on the front of it...


Hope today was a bit better honey.

Blogger JessicaRabbit said...

Well that just pisses me right off. I've lived in the state of anxiety for over 6 months, and that is NOT anxiety. Sure your having it because of everything else, but it is simply a symptom of whatever else is causing all your other problems.

And really would you like me to come out there and explain to a doctor what anxiety not stemming from some other illness is like? I promise I will explain it to them politely, and only kick them just a little while they go over your tests again and find the root of all your problems.

Also, have you considered Saint Bernard immersion therapy? I could road trip out your way with a couple of fluffy nurses, they help me when things are bad. My last bad panic attack Hermione just walked up to the side of the bed, kissed me and then came up so careful and spooned with me until my shaking stopped. I would so bring them out to snarf you. Baptism by Bernards ....

We all send much love to you, and the positive belief that someone is going to find out just what is going on, and help you. It will happen. I know it, I believe it, I refuse to accept any other alternative.

Blogger Susie said...

ck, I lug you back, and Sweet Pea speak makes any day better, as I'm sure you know :)

mrB, you and your poem are so right. I could write volumes about humans (this one in particular) and control, or, as I've learned to think of it over the years, the illusion of control, because really, that's all we have most of the time. Especially where the "biggies" -- life, death -- are concerned. In my faith, acknowledging lack of control is key; and I keep thinking that I have been through more than enough in life to have gotten a handle on that lesson. Yet, God seems to think that I need remediation. Or perhaps I'm going to a whole new level now: it's one thing to voluntarily give up control...hmm, I guess there is still some element of control in that; it's quite another thing to have control taken from you against your will -- i.e., control over speaking, walking, etc. (sucks big time, btw), but I'm sure there is much to be learned in that process. I'm kinda used to being at the head of the class; so far here, though, I'm one of the slow kids.
Thank you for sharing the poem. As you can see, you made me think a lot.

ssnick, I don't think I've heard that blessing before. I thank you, and I tell you, it served its purpose -- I do feel truly blessed by it.

lynn, I do want to have a party when this is done. The VBD is bad and he stinks, but for you, OK, I'll kiss him.

ern, thank you for your continued prayers. I just know that one day God will say, "Cheez! These bloggers, they won't shut up!" and all will be well. And thank you for that perfect passage. Just right.

kranki, I hope you are feeling better, I really do. And thank you for so aptly describing the current situation ;)

bucky, thanks, I haven't yet told Jif, but I will. Since he's hugging for dozens, now, he's way behind and will need to get bizzy.

m & co, thank you. The insensitive doc from the night before pushed me over the edge. But then a kind doc called on Friday night, and I had a much better Saturday. Probably not coincidence.

razz, your comment brought tears. Such a heart, you have. I'm looking forward to those thank Yous, too. In fact, saying them already, in anticipation that all will be well.

andrea, yea, in spite of what it must look like here lately, I really don't like to be a whiner. And I knew the amazingly sensitive and kind people who visit here would jump right in and do just what you all are doing. And I don't want to keep coming on here and fishing for that. But I'm not going to worry about that just now; I'm going to gratefully accept your kindnesses as the good medicine they are. Thank you.

mrsDoF, I haven't read. I want to, and I will. I want the book. Surely it's going to be a book.

karen, that's too funny. See, ck and I were so short-sighted, handing out the rat's asses willy-nilly without a thought for the maintenance of them. The last thing I want to be associated with is a poorly maintained rat's ass. Well, one of the last things, anyway.

candace, WHO SAYS I don't need sympathy? ;) No, really, as I said to Jif, after interacting with an assh...I mean, insensitive doc, what I really needed was assurance of someone caring. Giving a rat's ass, if you will. Not that I don't have that, IRL, because I do. But there's something quite wonderful about this "place," this little world where people don't know you, but do. Thank you. Truly.

squirl, I'll have to go see where you're going, but I hope it's fun and wonderful :)

eclectic, I'd love to see that, too :) You're right, of course. Similar to what I said to mrB, I thought I thoroughly "got" the whole body betrayal thing with all the miscarriages; but, no, this is a whole 'nother Oprah.

traci, I do get scared sometimes. Terrified, sometimes. Not all the time. And now you've made me consider whether I get pissed off . . . I don't think I do. Curious . . . gotta think some more about that. I know I try to get -- and stay -- thankful. For every time I can do the things I need and want to do. For every good night's sleep, every kind gesture and word . . . I try to put my energy into thankful when at all possible, and really, no matter what, there's ALWAYS something to be thankful for.

nilbo, you're right about everything. As I said to Candace, it is just fascinating and so unexpected, to me, how much the kindness of unmet friends means. So very much. Oh, but I'm greedy, and would want an evening with Bucky and Jess AND marshmallows. And graham crackers. And Hershey bars. A fire. That's it.

trophywife, thank you so much for your prayers and your kind comment. I do believe.

jim, what are you thinking, coming up in here asking me to do math? ;)

nina, I guess I replied to your comment at your place. Again, I'll say, I do want to know what's going on with you. In spite of recent evidence to the contrary, it's NOT "all about me," and that wouldn't even be good for me. I don't get out to other blogs much, but I am very interested with what's going on with you, and all my online friends. xoxox

t.o.m., thank you for the kindness, and the perspective on anxiety's "power." It is becoming tricky now, frankly, to know what is purely physiological and what is a response to the initial stressors. For instance, my hair is falling out. Some of the disorders that I may have, have that as a symptom. On the other hand, the stress of being increasingly ill and undiagnosed for months can surely cause your hair to fall out . . . very tricky, this is . . .

crayonsmile, yes, I am. And I have faith in all of the above, too. Thanks for the reminders.

annejelynn, yea . . . the whole venting thing was never my niche, but I can branch out ;)

lynn, your comment somehow made me think of the whole "reality show" thread from a previous post. What I thought was, "mygosh, these people are seeing who can be the kindest." What a beautiful thing to say. "I noticed something good and it made me think of you." I can't imagine a lovelier (although undeserved) compliment. That's going in my keeping box. Thank you so much for ALL of your kindess and encouragement.

pissy, you know, you're awfully sweet for a foul-mouthed, pissy person ;) Thank you, and Saturday WAS a better day. Really was.

traci, that makes me giggle. And yes, my friend, the next day was better.

jess, thank you, for the doggy offer, and for your stubbornness. Both good. Biscuit doesn't quite have the power that the Bernards have, but he tries. He's taken to jumping up with paws and head on my chest, when I'm sitting or lying, with his nose just below my chin, and staring into my eyes. I think he's trying to tell me what you did; or else he's thinking there's some food on my chin, which is entirely possible.

Blogger Mr. Bloggerific Himself said...

"you made me think"...there's that control thing again. hehe

Blogger Nina said...

I know honey, that is why I said, What was I Thinking?? I wasn't thinking straight . . . you know, we all want to be understood, and after I read this post.
I thought, why didn't I let you know that I understand a bit? Just like I know you understand and realized that, I want to know what is going on with you no matter how I am feeling.
Our friendship means much to me and I want to know and to me that means I owe you the same. Hugs & Love

Anonymous Anonymous said...

Never ever lose hope. The right doctor, will make the right diagnosis.

I am sorry you have not found him/her
yet. When you are sick and someone say's something so very stupid. You should say to them "would you say the same thing to your Mother, wife,

Bless you Susie.

Blogger MilkMaid said...

I'm in line for a hugged by proxy.

Your strength in all of this, is amazing.

Blogger Kat said...

Thinking of you today as always. Don't give up your hope, there will be an answer.

It might be in my WV for today...


I think it's clear that you need to put peanut butter in the oven. Or that JIF is baking you a cake...

Blogger Amy said...

Oh Susie.

I wish I could tell what ever is going on with you to take it's sorry arse and move along.

Big hug. Big smooch. Big everything to you, dolly.

Blogger Effie said...

Ooh--I think Jif & LG's arms are gonna get tired from all this "hug by proxy" stuff, but you know? I really would like to send another--just when you need it!

I was writing in my pregnancy journal this morning (yup, I'm keeping a journal that I can show the baby when s/he is older--weirdo, that's me!) and at the bottom of the pages there are Bible verses (my Grandma gave me the journal a couple of years ago). This was the one on the page:

"The Lord is my rock, and my fortress, and my deliverance; my God, my strength, in whom I will trust." Psalm 18:2

I read that and thought that maybe you'd like having that quote handy--I find it hard to remember to "cast my cares" on Him, but when I do, I feel more at ease!

Hugs & kisses (and a proxy tummy pat for you--the baby likes it!)

Blogger LadyBug said...

Honey, I love you, and I just feel so helpless.

Which is how I imagine you're feeling, too. And Jif. And LG.

My love, thoughts, and prayers are with you all.

Anonymous sometrouble said...

Praying for you RIGHT NOW!

and praying for Jif and LG, too.


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