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Friday, February 09, 2007

Chronic

Writing this paragraph after the rest of the post, I will add the disclaimer: this is probably depressing, and rather poorly written, too. Why you would want to read something of that sort, I cannot imagine. But if you do, here you go:

This will probably be nekkid. I say that mostly because I have no idea what I'm going to say, just that so many thoughts are swirling that I must get them out to quiet things down in here. I've never blogged for that reason before. I think that's true; never. Mostly I've had a story to tell, or a party to give or something that I wanted to share. I don't even know that this is something to share; I like to share good stuff, not swirling crap. But if you're reading this, then apparently I've decided this is something to share, and won't you join me in some swirling crap? (And if you decline, I'll take no offense. I'd probably do the same if I weren't me right now.)

I've had whatever this is for almost 10 months now, in some form. When it began, I asked people to pray for me. Some still do. Some people (I'm mostly talking about IRL people now) called and visited and sent cards. Until they stopped. Some people (I'm talking imaginary friends now) stopped visiting, emailing, and the like when I refused to stop being sick. And then some people from both worlds still wrote, called, "visited," and it was I who stopped. Answering the phone, writing back, returning the visits. We're all tired of it.

IRL, some of the people I know very well who are the very, very best at going to the hospital with you, at praying for you, at sending you a card . . . they've disappeared. And I want to say right here and now, I understand. I knew you would do that. It's who you are. It's not good or bad, it just is. Your gift is being there to cheer on the sprinter -- the one who's crossing the finish line victoriously, whether victory means beating the cancer, surviving the operation, or "victory in Jesus!" -- being born into the next life. You're good at being there for the life crap that has a beginning and an end, and they're fairly clearly marked. You suck at the chronic. You always have. You suck at things like depression, at standing by people who continue to make bad life choices, and people who somehow manage to get unidentifiable illnesses, or maybe even worse, illnesses that they might be able to identify if they'd just take the damned test, but they won't, because they don't want to know. Even if knowing would make it easier for you. This is not your call.

I do not hold it against you that you can't be around for this. Hell, I'd stay away from it, too, if given the choice! But don't hold it against me that I'm not being sick in a way that works for you. I understand all, or at least many, of the reasons why you can't be around. Something like this challenges some people's faith. And when you're in the faith business, that can be a very threatening thing. And for many people, something like this threatens the sense of control, the sense of fairness, the illusion that most of us cling so desperately to, that if we do this and that, things will be OK. Or if something does go wrong, and we do the right thing, it will be made right. And "those" things happen to other people. And if we never have to get up close and personal with "those" things, we can carry on with that illusion. The older I get, the more I see that very few people are able to live out that illusion until they get very old and die peacefully in their sleep. But some do. Maybe. Maybe you'll be one of them. (I'm not talking to one individual.)

I don't want this. But truth be told, I can do it. I am actually rather well qualified for it. Because I learned, very, very early that very bad things can happen, over which we have no control. The particulars of this are different, but the premise is very familiar to me. Been there, done that, lived to tell the tale. (Or not tell, as I choose.) And in a way, I'm thankful for that preparation. It's still a little bit curious to me that I don't meet criteria for a major depressive episode, or one of the flavors of anxiety disorder. But, surprisingly (to me), I really don't. If there were a disorder called "frustrated beyond measure" or "intermittently terrified," I'd meet the criteria for that. But most of the time, it's more, "sonofabitch, now look what's happening. " Or, and I just thought of this: UHOHNOWLOOK! heeee Who knew my URL would be prophetic? Speaking of such, did you notice my tagline is gone? It said something about my epitaph. It was funny when it was far away. Much less so when it was/is maybe in view. And of course I don't really want to say at the end of my life, "What was I thinking?"

I don't know how to do this. There's an excellent chance I'm not doing it well. But I'm not doing it thoughtlessly or carelessly. As of right this minute, the status is, the endocrine doc doesn't think I have any sort of vitamin, hormone, etc., problem. My symptoms add up to one thing that hasn't been ruled out. And I still have a doctor saying that even though that's the case, he's not sure; because I'm a "very slow progressor," if I have that one thing. And the status remains that there's that one test that, if positive, would be "confirming," and if negative, would have no value in ruling out that one thing. And that test hurts. I have researched it a bit, enough to learn that it's used as a method of torture in certain parts of the world. And even the torturers don't often administer the procedure to the tongue, which is what I'd have to have. Not that the medical personnel would torture me; I know better. They would be as kind and as quick as they could. But still. Why do I want to be tortured to either learn that I will die a horrible death in rather short order, or learn nothing at all? So again, I'm not doing it right now.

Except. Except that I'm starting to think about doing it. Because I need hope. In spite of evidence and opinion to the contrary, I need to keep hoping that this is something else. And no one, no medical person, will put any effort into continuing to search for something else unless I have had that test. Because when I list my symptoms now, it's pretty obvious that ALF is a strong contender. So any new doc wants to know if I've had that test that can "pretty much" confirm it. And the truth is, "No, because I don't want to know that, because if I don't know it, then I don't have it and I can keep looking for other explanations, and I really, really need someone with a medical education to help me look for other explanations, even though I won't have that test that might save us all a lot of time. I need hope more than I need to save anyone some time." But as long as that's my position, it's hard to find someone to help me keep looking.

And the people who need answers, who want to know about beginnings and ends, they don't get why I don't just go ahead and have the test. It's very clear to me. I don't know why it's so hard for some people to understand. That illness, if I have it, will become so fucking clear, so undeniable at some point. I don't need to take its name before I have to. I don't want to take its name before I have to. I want to never have to. But I don't know. So for right now, while I can still deny, not knowing is what I choose. And I will remind you, there's nothing that can be done for that illness. No. thing. NOTHING. When you can't walk, you get in a wheelchair. When you can't move . . . you just don't move. Someone moves you. When you can't swallow, you get a feeding tube, unless you've signed papers or told someone you don't want one, back when you could still move your arms or speak. When you can't breathe, you go on a ventilator unless -- see preceding sentence. NOTHING. It's not like not having the test is delaying treatment. There. isn't. any.

So for now, I'm living like an addict. One day at a time. Just observing. Today, speaking is really tough. Swallowing is a little bit better than that. Walking and using my arms are OK today. Yesterday was tougher. Tomorrow will be whatever it is. And I'm still hoping that someone will take the time, and the interest, and have the knowledge to tell me that all this is something else.

And when I learn it's something else, there will be a treatment for that something else. Until then, I'll keep trying to do what I can every day. On my birthday, when I got the candle in my muffin, and went to blow it out (oh, stop!), I had a little moment of panic over what to wish for. At first I thought, "To be well!" But another thought immediately began to compete with that: "To live well!" Jif and LG didn't know, but there for brief moments I had that internal tug-of-war between being well and living well. Of course it was just a birthday candle wish, and it may not mean a thing. I'm a prayer, not a wisher. So maybe it was a prayer, too. I want more than I can even express, to BE well, that is, to be healthy. But if I had to choose, like I did when I wished my wish, I would choose "to live well." I have some say over that, every moment, regardless of what my body is doing.

I told a blogfriend earlier this week, I know that it is still a good day when I observe that I am still able to wipe my own butt. I am. I do. Sometimes more slowly than at other times. But that is my new standard for whether things are OK. If I get better from this, I hope and pray, and I KNOW that my life has changed. When your criteria for how the day is going, no, how your LIFE is going, is whether you can still wipe your own butt . . . not much is going to rattle me, if I can get past this.

There's more. But that's enough for now.

file under: &Partial Nudity &WTF Disease

63 heads are better than one . . .

Blogger Erin said...

Oh, sweet Susie. I don't necessarily know what to say, but I'm still here. And I certainly can't fault you for not wanting that test. If I were there in person I would give you a big bear hug, so instead, I'll just have to send virtual ones.

I hope the post succeeded in purging some of the swirling crap. And as for living well? I think that you are handling all of this amazingly well, and showing a lot of other people what kind of person they should aspire to be.

 
Blogger Ern said...

Um, that last post was me. I don't know what's up with Blogger.

 
Blogger Circus Kelli said...

"Swirling Crap" A great title for a blog, and pretty much the way I write lately.

Susie, I love you, and I don't blame you a bit for not wanting to "go there" with that test. Sometimes I suck at not "checking in" and being supportive, and for that, I apologize. Please know that not a day goes by that I don't think about you and what you and your family are going through and offer up at least a little prayer for you all, too.

Aren't prayers really wishes we make to God?

 
Blogger elizabeth said...

just so you know, there are lots of us (i'm sure) who are still around, still lurking. we haven't left. we just don't really have the right words for you. if i could think of that magical sentence that made you feel even a little better for even a minute, i'd come by and say it every day. but i don't, so i lurk, and i hope.

 
Blogger Susie said...

dear friends, I'm not trying to scold anyone for doing anything wrong. I don't think that way at all. No one is doing anything wrong, and many people, indeed, anyone who's even reading this, are being wonderfully compassionate and supportive. No one is doing anything wrong. I'm just writing out some thoughts I've been thinking.

ern, it purged a little of the s.c. ;) I'm really not trying to show anyone how to do anything; except me. Trying to show me how to live well. And I'm not always the best student. But trying.
It's really a growing experience. When you're confronted with being unable to speak, or to use your hands, or to go places, you begin to take more care about what you do say, or what you do with your hands, or where you go, while you still have those abilities. And that is only a good thing. Even if I can be free from WTF, I want to keep that awareness. So, I'm just trying to show ME. If anyone else sees something they can use, that's gravy.

ck, don't make me put a diaper on my head . . . you never, ever suck at being supportive. That just is never true. Thank you. There are as many ways of praying as there are pray-ers. God is not limited by any one person's or one group's definition of prayer.

elizabeth, thank you. I'm not looking for particular words. Hope, prayer, kind lurking, these are all good and helpful things. Thank you for being around :)

 
Blogger Kristal said...

My thoughts are with you and my heart goes out to you.

I've been thinking of how to start a Cancer Patient Advocate non-profit that would include medical research assistance to the patient, as well as contact with other people who have had the condition and survived, or are living with it, or even relatives of people who have had the condition. Information is GREATLY lacking in American healthcare. It's like they hoard it like gold and jewels.

The same thing needs to be done for all kinds of patients who have chronic illnesses.

I'm so sorry that you are struggling. Love and hugs to you, don't let those doctors forget you, make them work for their money.

 
Anonymous Sharkey said...

Elizabeth mentioned wanting to have a magic sentence that would comfort you. I've felt that way in the past too, but I've come to realize that sometimes there are no words.

So all I can do is to be present here for you and to pray, and hope that those things offer you some support and comfort.

Now . . . I'm thinking there must be some connection between swirling crap and wiping your own butt, but I'm not clever enough figure out what it is. I guess I'll leave that task to William or Bucky.

 
Anonymous Anonymous said...

I've been lurking since sometime in 2005. Every day. Never saying a word. Not even when I'm sobbing and praying for a woman who I would only recognize on the street if she was oh-so-slowly walking a VBD. We don't always let you know that you're supported still--but you are. Even by those of us who wouldn't know you from Eve.

 
Blogger WILLIAM said...

There is nothing wrong with swirling crap. It is where it lands that you need to worry about. Like a Tornado.

 
Blogger Furry Kids said...

I've lurked here for several months and I completely ditto Anonymous's comment. I laugh and cry and pray with you every day. We're out there, even if we're silent.

 
Blogger lawyerchik said...

Susie, I am so sorry that WTF looks to be turning out to be what you don't want!! I don't even know what to ask or wish for you, but maybe that you will always have people around you - online and IRL - who will be there to go through it with you, no matter what. Hang in there!!

 
Blogger eclectic said...

Darling girl, one thing I know: whether you can wipe your own sun-eclipsing orb or not, you are one of the most fiercely strong women I've ever known. Your courage and determination to live well through what is an incomprehensible challenge, is an inspiration to me each and every day. Live on, Susie.

And if not-knowing helps even a tiny bit, I will personally double my efforts to make you ignorant. *heh*

I love you.

 
Anonymous Barb said...

Susie, I have no magic sentences either, or even semi sensible ones. You probably have no idea how many slurkers (semi-lurkers) you have who are still slurking every day and praying and hoping for you.

DO tell some of your IRL friends you'd like to see them on a specific day or time and that you have nothing new, just an old need to see an old friend. (That's the mom in me talking, and no one ever listens anyway.)

As far as not wanting to take the painful test for a diagnosis, and yet sometimes you think maybe you might want to take the test, those sound like perfectly clear and rational thoughts. And if you decide not to decide, that's rational too! (An old boyfriend/therapist told me that, but maybe he was kidding? :-)

If humor and prayers can cure WTF, you have a seemingly limitless supply coming at you from the blog world!

 
Blogger Mr. Bloggerific Himself said...

I was doing ok until I got to the birthday candle part. I was putting together my reference to a movie I’d once seen that spoke to the first part of the post and then darn it, you “made me read a bad post.”

[“Made me read a bad post” is a personal reference, modified. Whenever I watch a movie with someone, even if I picked it out, if it’s one that makes me tear up with ANY type of tears, I inform the other viewer they “made me watch a bad movie” simply because some emotion was evoked. ]

Anyway, I don’t want to give the title to the movie because it will immediately take away from the meaning of this one particular scene that, in some form, answers the first 4 or so paragraphs of your post.

Basically I think that I took away this: People don’t always know how to respond to any stressor, including when someone they care about is ill. Especially when they are very ill. Make a request of them, or give them a little job and they’ll gladly take care of it for you. Expect them to carry on conversations in the way they did before the illness may not happen.

My mom has been in the hospital for a week now and I find that locating a space in the parking structure a pain in the ass. The walk down the hallways is getting longer. The food in the cafeteria doesn’t quite have the zing of that first day. But I’m still making every attempt to make an Elvis joke as I feed Mom crackers. I’m still asking to wheel her down the hall in a race while applying the moisturizing Chapstick I gave her.

Last night she smiled as I was leaving and asked, “What would we do without family?”

My answer was, “I don’t want to know. I don’t ever want to know.”

 
Anonymous Karen said...

Still afraid to say the wrong thing, but...still here. Thank you for being you, Susie. Our lives are richer for it.

 
Blogger eclectic said...

Bloggy, you're mean. You made me read a bad comment.

 
Blogger Andrea said...

I keep trying to think of something different to write, something inspirational and hopeful that hasn't already been said. Nothing comes to mind, darn it. Just know you are loved by many and by One.

 
Blogger Lynn said...

I understand some of this, but for very different reasons. I understand 'chronic' and the fear that things won't improve. I understand being afraid of certain knowledge, though I know it's quite a different thing. Lots of people have dropped away from me, too. I'm not doing MY thing 'right' either.

There is no right way. You do it your way, Susie. For what it's worth, I won't drop away. I KNOW that your way is the right way for you and I will be here... chronically!

I love you, Susie.

 
Blogger Summer said...

Hi, Susie. I'm still here.

"Nekkid" becomes you. Thanks for letting us see.

 
Blogger Nina said...

I'm hugging you right now and loving you all the more. I still believe you will get well. I would still believe this even if you had some test that said otherwise. But then even if the test did say otherwise I believe in miracles.

Even when there are days that are harder to have hope than others. Know that I will hold it for you and hope means to me believing that tomorrow could be better than today . . . That you’ll get a second chance . . . that you’ll make a difference . . . that you matter.

If having and holding HOPE, for you aren’t enough. I’ll even hold your butt up for a while, to give Jif a break. ;)

 
Blogger Squirl said...

First, I had tears welling while reading your post. Then Mr B's comment made them spill right over. Then Nina made me laugh. The butt part, you know??

There is so much love and hope here. It's got to be sending healing to you. Forget ALF. You just keep living your life. There are still loads of virtual friends, and family, hanging out here for you.

 
Blogger SassyFemme said...

I don't know what to say, so instead I'm reaching through to give you a hug. {{{ }}}

 

((((((Susie))))))

 
Blogger Bucky Four-Eyes said...

I love you, Susie.

But that WTF? It's a COCKSUCKAAAAAAAH!

 
Anonymous marcia said...

Still lurking over here in Windsor, England and wishing you better.

 
Blogger Circus Kelli said...

Well shit.

Bloggy made me cry.

And I don't even like my family. ;)

 
Blogger Susie said...

kristal, thank you for the encouragement. I think your idea is a good one. Patients researching on their own and taking the info to docs don't get very far. And I know that there is tremendous value in talking to others who've had what you're struggling with. In my case, when I've talked online with people who have the illness in question, I have learned, repeatedly, that info I'd been given by doctors is less than accurate/reliable. I wish you well with your advocacy endeavors.

shawkey, presence and prayer both offer support and comfort, all the time, every time. Shawkey, I know you're trying to help, but seriously, if wiping my own butt leads to swirling the crap, then I am slipping; we don't wanna go there. That's just nasty, Shawkey!

anon, wow, I've been on here a long time! Thank you for such a kind comment. I do know that many more people visit than comment; I guess I don't think about the possibility that the "quiet" people are praying, caring, hoping, too. Thank you for saying so; that's lovely.

william, So you're saying it's all good as long as I'm not a mobile home park in the midwest? Shut up and give me one of them donuts. ;)

furrykids, thank you for letting me know you're here. Not that I mind lurkers. You're welcome to visit quietly if that's your preference. But like I said to anon, it is nice to know that there's even more good stuff being sent my way than I knew about :)

lawyerchik, thank you. It is good to know that there are some people who will stick around when the going gets tough.

eclectic, you are not very qualified to be a purveyor of ignorance, but I know you'll do what you can. I love you, too.

barb, thank you for your thoughts. I might just take your advice to ask people to do something specific. In fact, I already did that, asking a SIL to help with LG's birthday celebration.

mrB, well, if that isn't a damned annoying ass comment, I don't know what is. You don't go on and on about "it's like this movie," and that not tell what the damn movie is! Cheez!
For real, though, your advice is sound. I hope your Mom is OK, and I am glad that both you and your Mom have family you can count on. xxx

karen, I hope you don't stay afraid. Thank you for coming around.

eclectic, isn't he sweet? I mean, for a meanie?

andrea, thank you :) This is not a test. (Well, maybe it is; but not by me, and not of what people say to me :)

lynn, thank you for that. I'm sure you can identify with some of what I'm experiencing.

summer, I have missed you. It warms my heart to see you here (and that is no pun on your name; your name could be Snow White and your visit would still warm my heart).

nina, truly, thank you for all of that; I have thanked you before for hoping when I run low. I mean that. But if you're gonna volunteer to hold my butt up, you'd better be pumping some iron.

squirl, thank you, my sister. I had the same responses that you did ;)

sassyfemme, thanks, I'll take it! :)

htgt, that's a big one; thank you :)

bucky, I love you, too, you damned chinaman ;)

marcia, thank you; I have met some dear imaginary friends from your corner of the world. I hope to visit some day.

ck, "Well shit," is always such a thoughtful, inspiring comment. Or were you referencing my butt-wiping abilities? :p
I know what you mean; but we love Bloggy's family, right?
I love you :)

 
Blogger Von Krankipantzen said...

I have been on both sides and even though I know every kind word is so welcome I also feel like I don't have the right words to make you feel better like I want to. And I REALLY want to. Even though I feel like a useless tit I intend on sticking around making a nuisance of myself. I also completely understand about taking tests (or not) and living on your own terms because when you get ill you lose so much control. Any way you can regain some of that, well, I'll back you up 100%. I do know this-I wuvs you.

 
Blogger Circus Kelli said...

I was totally going for the "thoughtful, inspiring" thing.
Just like my word verification: uhihb.

;)

 
Anonymous dawn said...

hi susie,
I really cant put into words how badly I want all of this WTF business to just go away for you.

even with all the WTF stuff, you continue to inspire me with your humor, strength and kindness. thank you.

just wanted you to know that i think of you often, and send virtual hugs whenever you need them.

 
Blogger whfropera said...

a mostly lurker who checks in with you every day Susie - just to see how you are.
many other folks in the comments above have said wht I feel in better ways that I can say it.
still checking...and hoping...and praying...

 
Anonymous platypus said...

Well done for posting, sweetie, it must have been very hard for you. Just so you know, I'm not going anywhere and I'll visit every day even if you can't visit me. The category's not called 'We Love Susie' for nothing, you know.

 
Blogger Sometimes Saintly Nick said...

My dear Susie, what you are experiencing must be so painful in so many ways. I am glad you shared some of that pain that may or may not be obvious to those of us who care and love you. My prayers continue each day: you are at the top of my prayer list and the first name I raise to God each morning and evening.





Shalom, my dear friend.

 
Blogger Redhead Mommy said...

I had no idea. That's what I get for stepping out of the blogosphere for so long. I'll be praying for you.

 
Anonymous Jeannie said...

Keep talking, we're listening.

 
Blogger Susie said...

kranki, thank you. Sometimes I fear that I overuse those words to the point of meaninglessness, but I do SO mean them, each and every time. Thank you for the love, the prayers, the understanding, the example that you've been, and continue to be. xxx

ck, I knew that :)

dawn, thank you, honey. JUST GO AWAY is exactly what I want from WTF, too. Who knows? Stranger things have happened. Hell, stranger things have happened right here on this blog ;)

operagirl, heartfelt thanks, my musical friend :)

platy, you are so dear. It wasn't easy, and frankly, leaving it up isn't easy either. I've had second (third, etc.) thoughts. But I do appreciate the kindness, the perspective, the good ideas that have come here via the post, so it's OK, I guess.

ssnick, I truly don't want to be all WTF, all the time. But sometimes, because it is so prominent in my life, I just have to dump it out. Here seems as good a place as any. Thank you for your prayers, Nick. I do believe.

redheadmommy, I've seen what has been happening at your place. You've been just a little busy, wouldn't you say? ;) Thank you, prayers are much appreciated.

jeannie, your comment really hits home. Because that's what I really, really want to do. Here, IRL. I want to be able to talk. And to type. Don't want to have to stop. That's what I want. Thanks, Jeannie. xxx

 
Blogger Babs said...

I so get the what's the point in not having the test. How will putting a name (and a crappy thing that name is) on something make it any better? My sisters think I'm nuts because I don't like doctors (long story there) and unless I'm forced (like last year's pneumonia) I ain't going anywhere near them. I'm never sick until I get near 'em. Works for me. (who? me? crazy? LOL)

Are you by any chance taking any meds for cholesterol? or any statins at all? They have some funky side effects that sound like some of what you have. I had to change drugs when one made me feel like I'd been run over and I couldn't move. Even the naturapathic versions (which are non prescription and sold as supplements) can have the side effects.

I'm still praying and hoping even though I don't comment very often.

 
Anonymous Anonymous said...

Susie, without you many of us would have little awareness of "wtf." or the struggles that one faces when they get "wtf" or any other chronic illness. Keep showing us how to fight the good fight.

I think your words reach more than you realize.

 
Anonymous Ortizzle said...

Oh, geez, Susie. You are handling this so well. It's so hard to say what you should do at this point, but I understand the feeling that you might want to take the test.

There outta be a WTF support group somewhere. Wait! There is: right here in the blogosphere. We love ya, sweetie, and personally, if I lived in your neck of the woods, I would so be over there with a hot cuppa and a listening ear. Since I can't, please accept a huge virtual hug. ((((((( )))))))))

 
Anonymous Anonymous said...

Susie, there is so much I have wanted to say and start to say but then it all sounds so cliche' and minimal and meaningless, so I erase it and go away to try and put it all together in a helpful , meaningful way. I still have failed but I want you to know that I pray and think about you everyday. I'm leaving my email address so if you choose to send me yours I can write and hopefully can say what I've been trying to put together. You have such a strong good attitude, I'm in awe. Donna (DonnaJo)

 
Anonymous Anonymous said...

This comment has been removed by a blog administrator.

 
Blogger Mr. Bloggerific Himself said...

Yeah, sorry about that annoying movie tease there. But the title will cause wrinkled noses, and so would the actor for some, but there are a couple of scenes that are pretty potent.

The boy and I took the "second shift" today, spending from about 2-6 with Mom. Near the end he whispered to me, "I'm about ready to go home." Dad had just gotten there and hadn't had dinner so we decided to stay and eat with him. When we were done my boy said he wanted "to tell mammaw bye before we go." Dad was like, "That's a long way to walk just for that..." and smiled.

I smiled at my boy and said, "Yeah, but it's worth it isn't it?"

And so we did.

And speaking of movies...we've got one ready to spin in the DVD player. Thank you Blockbuster.com!

 
Blogger Susie said...

babs, right, the name will not make anything better, and I think it would make things worse, at least in the short run. But on the other hand, a negative test, even though it wouldn't rule out ALF, it might get someone more motivated to help me find another explanation. I'm still thinking.
Thank you for continuing to think about my situation; I'm not on any meds except vitamins/supplements, that the docs know about.
Thank you for your prayers, always.

anon, thank you. A lot of people have been dealing with a lot worse than this, for a lot longer. This has really been an education for me, too.

ortizzle, you are so right, that this is the WTF support group. There are ALF support groups, but in every sense of the term, "I don't wanna go there." I'm thankful they're there; but for many reasons, that's not where I'm going for support now, even though I'm very thankful they're out there. I cannot imagine how isolated people with that illness (and many others) felt before the internet.

donnajo, I'm deleting your email address here, so you don't get anything you might not want, but I'll give you mine: whatwasit@comcast.net
Your comment made me realize that since I switched to new blogger, my email address hasn't been displayed. It always was before, and you're welcome to use it :) Thank you for your prayers and for even thinking of me. It means a lot.

mrB, you better email me with the movie! I appreciate a potent scene! Last night we watched "Relative Strangers" with Kathy Bates and Danny DeVito. I had never heard of it, and maybe I was desperate for a laugh, but I thought it was pretty funny.
Now, I do hope your Mom is doing OK. And your boy is a chip off the old block. You old block.

 
Anonymous peaches said...

As Andrea, I dont know what to say that will sound 'right' and 'good' and 'inspirational'.

I wish I was a doctor who specialized in the obscure and undiagnosable.

Just know that I love you, and you are always in my prayers.

 
Blogger Traci said...

I have no idea what to say about this except I think of you every day and wish there was something I could do to help you. Swirling crap sucks...completely.

 
Anonymous stringmuse said...

Susie, I am amazed by your strength and heartbroken at what you have to deal with. Peace and health ... those are my prayers.

 
Blogger Arlene said...

Am I missing something...what is wrong with you? Are you ok? I hope so, 'cause I enjoy reading your blog! Seriously though, I hope you're ok. I'm always here if you need to talk!!

 
Blogger Amy The Mom said...

Every day as I refresh on your page, I pray that I will see the post announcing your defeat of WTF. I almost never post a comment, but I'm here at least a few times every day. I often wonder if you have a backlog of posts that are even more naked and vulnerable than this one.

I have an acquaintance who lost her husband to the disease we shall not speak of prior to my meeting her. I can't bear to think of this happening to you, one I admire and respect from afar.

 
Anonymous Anonymous said...

What to say? What to say? I am ridiculously wordless, will a cyber blog hug from someone who usually cringes away from cyber hugs do? Am happy you can still wipe your own bum though, hooray! Helen in England because stupid blogger won't let me be me, who is usually 'the other me'.

 
Anonymous kalki said...

Susie, I'll admit that I struggle with the injustice of this. I don't delude myself into thinking that bad things can't happen to any one of us, but still I struggle with the cruel injustice of this. I never stop holding you in my heart, but sometimes I have to turn away for a moment to compose myself.

I want so badly for you to be well. And I think you will. I have hope for that. But I guess the most any of us can count on, can promise ourselves, is to live well. And to love well. That most of all. (And you do that so well.)

 
Blogger Amy said...

Love you, swirly susie.

 
Blogger Laurie said...

I visit nearly every day and although I don't comment very often you are always in my prayers.

 
Anonymous Michelle said...

I am a lurker mostly sometimes a poster. Mostly a lurker because like others I want to say the right thing (how selfish of me I realize) when there is no right thing to say.

Tonight I will say a prayer for you and tomorrow night when I walk the dog I will wish on a star for you. Prayers wishes none of it can hurt. I am here rooting for you and sitting in amazement of your courage and perspective. I cried as I read your post tonight - because even though I don't know you - like everyone else that comments here - I wish I could fix it and also because you so profoundly remind me that I need to count my blessings everyday and live well.

 
Anonymous sheryl said...

I've been away from the internet except for comments I can make from my blackberry lately - I'm sorry I missed this until now.

Mainly, I want to say "Sing it, sister."

I'm stymied by the question of whether to find out about that one thing or not...I'm not sure what I would choose if I were faced with the same choice, or if somehow if I was in that situation it wouldn't seem like a choice.

I say that because there were so many things I heard people (on TV and in movies) say about love as I was growing up, and I would often think to myself, what does that *mean*? Or how does that *feel*? What the fuck are they talking about? And yet, here I am being loved by someone and loving someone and now many of those mysterious things just "are".

I hope you continue blogging partially nekkid, whenever needed.(I keep wondering, though - is it Susie's top half that's nekkid right now or the bottom half?)

I wish you peace for your heart when you're troubled, and I wish you the eternal flame to fuel your ass-wiping.

 
Anonymous sheryl said...

Ok, that last part came out a bit different than intended. I don't wish you the eternal flame of itchy-burny-ness. I was thinking more along the lines of chutzpah and love of life...

:)

 
Anonymous katietoyboy said...

Well, Susie Sue. If you wake up in the middle of the night with an itchy nose (i.e a sign that someone is thinking about you). It may well be me checking out your site, as I do every morning when I get in to work in Ireland. Hope you realise that best wishes are aimed at you from all directions and at times of the day and night.

 
Anonymous LadyBug said...

Oh, honey...I don't even know what to say. I wish so badly that there were something - anything I could do for you. I feel so very helpless. The one thing I can do is Pray. And I do. And I will. As long as it takes. I will hold on to Hope with you, my friend. And if your grip starts to slip, I'll hold on to it for you.

 
Anonymous Pat said...

Susie,

I would not take that test unless I got to the point I just couldn't stand doing nothing. And then I'd wait some more.

You obviously have lots of friends hanging in with you and maybe you can realize that there are a lot or lurkers out there too who check in daily to hopefully see good news. And, yes, a serious illness challenges people to either be willing to face mortality or turn away because it's too hard.

This is a quote from Henri Nouwen, one of my favorite writers - "When we honestly ask ourselves which person in our lives means the most us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."

I suspect you have friends you'll never know about here in blogosphere. Hang on to hope and continue to life your life well.

Much love.

 
Blogger Susie said...

peaches, your just stopping by here is right and good and inspirational.

traci, you sound like you have some experience with swirling crap ;)

stringmuse, those are good prayers, my friend. Keep doing what you're doing :)

arlene, I'm going to take your questions in reverse order: NO! I'm not OK! And you've asked the $million question: I/they don't know what's wrong with me. If you look in the categories under WTF Disease, or if you skim back through some posts, you'll find more than you'd ever want to know about my illness. I'm glad you enjoy coming here; I enjoy being enjoyed. Very much :)

atm, I'm sorry for your friend's loss, truly. Thank you for checking in. I surely hope to have some good news some day.

t.o.m., I'll take that rare cyber hug :)

kalki, hugging you. I just had to delete a rather longish reply because it gets into more than I want to get into on here, just now. I don't know that this is unjust, honey. I don't know what the criteria would be for determining who gets what if there were justice in health and illness. I know that I don't "why me?" Why not me, if anyone? I wish no one had to have WTF, and I certainly wish no one ever had to have ALF. Thank you for your kindness.

amy, swirly sounds nicer when you say it :)

laurie, that's what I need; the always kind of prayers :) Thank you.

michelle, thanks for your comment, and for saying, more or less, that I'm not just on here selfishly whining. I don't want to do that; it is very encouraging to me when you and some others say that something that happens here adds something good to your day. That makes me feel much better, even with WTF.

she, I KNOW. It's a helluva choice, isn't it? I expect within a coupla weeks, if there's no other info, I'm going to just go have the damned thing. Maybe?
It's the bottom half that's nekkid, on accounta the butt-wiping. Pay attention!
Oh, and thanks for not wishing me eternal flames shooting out my ass. You're a real sweetheart ;)

katietoyboy, thank you, it is nice to know that when the locals are sleeping, there are others hoping, praying, etc. :)

ladybug, I could not ask for more from a friend. Well . . . nope, that's it :)

pat, thank you for such an encouraging comment, and a quote that really strikes a chord today. Such a person called me first thing this morning, as a matter of fact. As I've mentioned on here before, I tend to isolate from IRL friends when I'm not in a position to be a "giver." I need to do better with that.

 
Blogger ieatcrayonz said...

Holy mother of comments. If you had any indication that the blog world had forgotten you, then this would prove that WTF has taken over your brain.

We still pray for you when we put our daughter down for the night. You invade my thoughts throughout the day. Answers would be a sweet release from this dreaded unknown.

Stay strong, we will try our best to be for you.

 
Blogger Susie said...

umutha, thanks for the prayers. Keep it up. I think there will be good news some day. I do. Tonight I think that. xxx

 
Blogger Kentucky Brat said...

Susie.. you have stayed at the top of my prayer list since this all started, I know I'm horrible about commenting. But I'm always here, I come here to see your hope.. to maybe take a bit of it with me through my day.

You are awesome in everything you do and say. Amazing things happen to amazing people.

I so understand (different, but still the same) about the test. I have some things I could say about that test... but that was more than 20 years ago, I suppose it has changed since then. I do know back then it gave a FALSE - positive. So, your smart.. you know yourself better than anyone I can think of. You have a good home base. You DO live your life well! So, I wish you to be healthy. My birthday muffin (or whatever) will be here in 4 days... and that is my wish. I wish Susie to be healthy.

and I really hate it when Bloggy makes me cry

 
Blogger It's Me, Maven... said...

I'm here. I lurk without commenting most times. But I'm here. And I'm just an email away, and hoping for all the best for you, Susie.

 


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