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Wednesday, November 15, 2006

Wish I Didn't Know Now What I Didn't Know Then

I've tried to write this one a few times, but it's too hard. I need to scale back my aspirations. I started trying to do a history of all the symptoms that have appeared, disappeared, taken root, morphed, etc., to try to tell you WTF WTF is, but it overwhelms me and it would bore you to tears or worse. So I'm thinking I'll break it down into a few (or more) snapshots, random thoughts, just to give you a flavor of what my body, mind, spirit are going through.

Back then. When I said I was taking a break from blogging, except for Sundays, I expected that I would see a doc or two, have a test or two, take a pill or two, and get back to normal. That's not how it has played out, though. Many docs, many tests, not many pills, and I haven't seen normal in over a year, now, including the kidney stones that started last October. I have come back to blogging, when I can, because I enjoy it. And because there are very many things that I enjoy that I can no longer do. This, I can. Sometimes. So, I do. When I can.

Every day. The symptoms in what the New Rollogists call "the muscles of speech and swallowing" are the worst. I can swallow. That's the good news. I haven't swallowed without effort and/or extreme awareness since May. And that's wrong. We're not supposed to be aware of every swallow. It's supposed to be automatic, or autonomic. Take a moment to thank your Creator for your amazing, fully functioning autonomic nervous system. It's truly miraculous. And when it goes wacky, it's truly frightening. There are daily, sometimes constant, muscle contractions and contortions in my throat and tongue. Sometimes my tongue thinks it's in the circus. You see how Michael J. Fox's muscles do their own damned thing when he's trying to be relaxed? My tongue aspires to be Michael J. Fox. It nearly drives me out of my mind. My throat, my tongue, get tired, painful. There are medications I could take, but they don't know what's wrong with me yet, and the symptoms are complex enough as it is. Any meds that might help come with nasty side effects that might further complicate diagnosis. So for now, no meds. And the other thing that threatens daily to make me lose my mind is the feeling that I am being strangled. Always, except when I am asleep, there is the sensation of something choking me. As though WTF is a monster whose hands are always at my throat. I also feel (and this makes me sound psychotic, but I've got papers saying that I'm not) like my entire throat and upper chest are concrete -- very hard, very heavy, very oppressed.

Some days. The above leads to slurred speech. I hate that a lot. And it scares me. And it limits what I can and will do. At least for now. Also some days, there is muscle weakness. Mostly in my legs, now. And it has changed. It was once mainly my knees buckling. Now, it's either a weakness (like when you've had the flu for a week) or a stiffness, like a Frankenstein walk.

Knock on wood. There are some things that appeared over the summer that are very rarely an issue these days. My hands freezing into claws. That hardly ever happens now. I still get very tired around 8 p.m., and fall into a deep sleep for about an hour. But before, I was getting fatigued to the point of being immobile a couple of times a day. And also in the summer, I had difficulty waking. After a good night's sleep, my eyes would open, but it was as though I were drugged -- couldn't focus, couldn't move, couldn't speak, for many minutes. It was as though I had to fight through a fog to come back to consciousness. I really thought I was dying then. And that would have been OK with me.

Something I understand now. How and why people with chronic, debilitating illnesses become suicidal. I'm not saying that I am. I'm not. But I do understand.

An odd thing to ponder. The neurologist said to me at my last appointment that I need to consider how far I want to go -- how painful, how invasive of tests do I want to do -- to pursue confirmation of a diagnostic label that I can't do anything about anyway. In other words, do I really want to know if I have something that will only get worse and can't be treated? Or is it better to do what I'm doing, day by day, telling myself, "I have a really weird feeling in my throat and I'm walking funny today," and leave it at that. Some people that I've told what the neurologist said think it was horrible of him. I really don't. I don't think he has the best bedside manner, and if I am going to need a neurologist long-term, he may not be the one I stick with. But I think there is some sense in asking myself the question he raised. I don't have an answer yet.

What I wish I hadn't had to find out. I had no idea that there are so many illnesses, serious illnesses, for which there are no diagnostic tests. I did not know that there are so many illnesses for which there is no treatment. I didn't know, really, that in this time, in this country, many, many people are very ill and no one knows what's wrong with them. For years. Or forever. I didn't know how many people, particularly people with neurological symptoms, are misdiagnosed, and given wrong meds, powerful, heavy-duty wrong meds, for years.

And I know some things about physicians, at least about the ones I've seen, that I didn't know before. They don't do well with not knowing. They sometimes even become angry, disrespectful to me, because my symptoms, or at least the progression of my symptoms, is atypical, not textbook. I suppose dealing with people's mental health, I have a much more flexible mindset when it comes to diagnosing and treating. I fully expect each and every person to fall outside the "textbook." When that happens, I don't feel it's any reflection on my skill or my competence. M.D.s seem to struggle with that. I have done enough research of my own to know that WTF is not an easy, cut-and-dried diagnosis. It's quite challenging. I don't get offended or upset in any way with a doctor who says, "I don't know." What does distress me are those who accuse me of . . . I'm not even sure what. Of being dishonest about my symptoms, or my history, or my medications? Of wasting their time? And those who scold me for having symptoms that don't "belong" together. I have said more than once, there is nothing that would please me more (aside from just being well) than to have symptoms that are right there on page 1 of a first year textbook. I didn't choose WTF. It chose me.

I also didn't know that I would be so alone in my quest for a diagnosis. If a client comes to me and I really don't understand what is wrong with them, I accept that, having accepted them as a client, I have accepted the responsibility for doing my damnedest to find out what is wrong. I haven't had that experience with an M.D. yet. (Well, the ENT seemed to put a little extra effort in for a time.) I have come to realize that I alone am asking people, searching the internet all the time. The doctors I've seen attend to me when I am sitting in front of them. They are not trying to find out what is wrong when I am not there. They don't have to live in this rebellious body. I do. And I'm not a doctor, or even someone with a very scientific mind. It's a struggle, trying to get myself a medical education on my own. Even when I find something online, or when one of you sends me something, I haven't yet been able to get one of my docs to read it. They say they will. But a week or two later, when I say, "What did you think..." they didn't read it "yet." This confounds me. I have no understanding of this.

Not all bad. There was one doc, a gastroenterologist who (when I told him that when all the tests started coming back normal, I went to a psychiatrist to see if I were nuts) said to me, "We may never find out what's wrong with you; that doesn't mean you're nuts, that just means we're too stupid to know what's wrong with you. On the other hand, even if you are nuts, that doesn't mean you're not really sick, too." I liked him.

So WTF IS WTF? I don't know. "They" don't know. I've had many blood tests, scans, scopes, a biopsy. The only thing that has been identified is a vitamin D deficiency. So I take supplements. A vitamin D deficiency does not account for symptoms, other than just generally feeling lousy. I've been tested for lyme, lupus, myasthenia gravis . . . other things that I don't know about. I have alluded here, one day, to a 3-letter illness that I really don't want to have. I'm not superstitious; it's just that I hate that illness, hate the thought of it so much that I don't want to say its name here. You know that my last name begins with F. On the telephone, F and S sound very much alike. I'm always having to say, "As in 'Frank,' or as in 'Sam,'" to clarify which letter I'm saying, over the phone. The New Rollogist said to me "Your symptoms are consistent with A.L.F." Well, that's not exactly what he said, but that's how I think of it now. An alien. He went on to say then, and he has a couple of times since then, that although the collection of symptoms are consistent with ALF, the progression of them would be very atypical for ALF. And for this reason, he says he is 99% sure I do not have ALF. He then always goes on to say that, "Of course, everyone is different, and everyone progresses in a different way." 99% should be good enough. I mean, you would think, wouldn't you? It doesn't completely leave my mind, though. I think because he listed some other things that he is 100% certain I don't have.

There's no test for ALF. It is, he says, a "time will tell" diagnosis. When you've ruled out everything else and your symptoms continue, worsen . . . there comes a time when it's very clear that you have ALF. Or that ALF has you.

Of all the possibilities, rare, common, treatable, untreatable, chronic . . . ALF is the one that I pray not to have. You don't get to stick around very long if you have that. There are exceptions. But not many. So, just say no to ALF:

alf-2

The first time the New Rollogist talked about it, he said, "But you can't have that, because I've already diagnosed one person with that today, and I refuse to do more than one a day." That was kind of oddly reassuring. And I was relieved as Jif drove me home. But then I cried and cried. Because even though he was saying I probably didn't have it, someone did. Someone had learned that very day that he or she did. And no one should. It's a horrible [fill in expletive of your choice]. I've learned about lots of horrible things that no one should have, but some people do.

So, again, WTF IS WTF? It could be a neurological disorder that is difficult to diagnose; or, more specifically, for which there are no tests, just observation of symptoms. ALF is one of them; there are many others, I've learned. It could be an autoimmune disorder. Next week I see a Room-at-All-ogist, who will tell me if there's any room at all for considering autoimmune possibilities. It's a 3-hour appointment! WTF, indeed. But maybe he'll come up with something. I have heard that he has some sort of illness that was difficult to diagnose. Maybe that will help him help me, you know? I'm hopeful. What else? It could be something in the MS family. MS can be extremely hard to diagnose. It could still be a viral thing, that they haven't hit upon the right test for. Someone sent me info about CNP: calcifying nanoparticles. That makes a lot of sense to me, but some docs don't even believe they exist, and I haven't gotten any of mine to read about it yet. Another theory: WTF really started after I had the lithotripsy for the kidney stones. Almost immediately after. I can't believe that's coincidence. The medical types all dismiss it as coincidence. All I know is, aside from the kidney stones, I was healthy before the lithotripsy. It could be psychiatric. I could be nuts. As I said, I went to some people to find out if I'm nuts. They say no, or at least not in any way that could do to me what's been done to me. Nuts would be nice. I know what to do about nuts. I don't know what to do about WTF. And it could be something, or a collection of things, that no one in my medical world has encountered yet. The more people I talk to, the more shocked and saddened I am to learn of people who have "things" for which they never get an explanation.

I can't live like this. That's what I said when it became clear that the choking/strangling would be my constant companion. Yet, whaddya know, here I am doing just that. It is really, really tough. I've learned that humans can live with all sorts of things, even worse things than what I'm living with, even things that they really think they can't. I still don't want to. Even though I know now that I can. I still want this to stop.

Work. My private practice is basically defunct. The one it took me years to build. I can't even think about that. Remember when I told y'all how hard it is for a therapist in private practice to "call in sick"? I couldn't do that any more. And I told you how hard it is to fully attend to another person when I have a stuffy nose. Imagine when there is a monster trying to strangle me. I couldn't do it anymore. The word "devastating" comes to mind. BUT. I still work at the agency a few hours a week. I have two clients, and I have three graduate students that I supervise. As far as they know, I have a weird kind of sore throat that I have lots of doctors' appointments for. And that's not untrue, technically. One of my students, an older woman, flat-out asked me last week if I have ALF. I told her everything I've told you here, pretty much. My boss and colleagues have been AMAZING. So supportive, so patient with my absences and my lack of energy. God bless them.

I wasn't always like this. When I started blogging, it was all supposed to be fun. And funny. I NEVER wanted to be this serious or this personal. That changed last January. It's not what I wanted; but I am thankful to have had this outlet.

It is difficult for me to be so different. I am not friendly. Anymore. People who meet me now wouldn't think I'm friendly. Or witty. Or even smart. I don't have much to say. It's too difficult. I do isolate myself. Again, talking is difficult much of the time. And it's especially difficult to keep saying, "Yes, still sick; no, still don't know what it is." People get tired of hearing that. So they stop asking. And then they just stop calling, because that's what they want to ask, but they're tired of asking, and they know I'm tired of answering. I hope I get back to myself again some time. Soon.

There's more. Especially about family. But this is enough for now. I'm a little bit pathetic today. That symptom comes and goes. I'll be OK. Feel a little bit sorry for me for just a minute, but then go back to whatever you normally feel for me :) I feel very thankful for you. Please keep praying.

A CLARIFICATION: Apparently another symptom of WTF Disease is the tendency to make obscure references in blog posts. I didn't mean to confuse anyone, although I see from comments that I have. What I am calling "ALF" isn't the fuzzy alien or a liver disease. It's this. I just don't want to say its name here (I know, I'm being weird) and I don't want people who are looking for info about it to end up here. They have enough going on without chasing false leads.

file under: &WTF Disease &Partial Nudity

67 heads are better than one . . .

Blogger Effie said...

Oh Lovey!

Thank you for the breakdown--it helps me understand at least a little bit what you're going through! I wish there was something that we could do to kick that monster away from your throat. I don't know what good my words are right now. I'd like to be there for you and give you a big hug and make it all go away-=-can I do that?

Just know that I love you and am praying for you constantly!

I think that one new-rollogist who asked how far you want to go might have a good point there. You've been through SO much so far--will symptom treating be enough? I don't know as I can't feel how you feel. I am reminded of a Christy Lane song "One day at a time".....

I should stop wasting space in your comment section now!

One thing though--can you help me find my ankles? I seem to have lost them somewhere...

 
Blogger Circus Kelli said...

Susie - Girl. I love you. The breakdown is great, and does help to understand a bit of what you're going through.

I wish I could help. I wish I could say "THIS is it, and there's a cure and you'll be back to how you were before kidney stones tomorrow!"

Please know that I'm continuing to pray for you and your doctors. I'm still sending good thoughts your way.

 
Anonymous Sharkey said...

What a journey. Over a road with ruts as big as the Grand Canyon.

My stepfather has a different brand of WTF, and has been struggling for nearly five years. I recognize much of the non-medical "fallout" that you describe. As if the symptoms and pain weren't enough, they have a ripple effect on your relationships and personality that makes it even more difficult.

The docs with their huge egos don't help either. I hope the Room-at-All-ogist will have more empathy and more answers than the others.

Still praying for you, Jif, LG, and the army of docs, nurses, and technicians that you're seeing.

 
Anonymous LadyBug said...

"I hope I get back to myself again some time. Soon."

Oh, Susie, I hope that for you, too. More than anything.

Thank you so much for the update, dear. You are, as always, in my prayers.

 
Blogger Mr. Bloggerific Himself said...

Ooh, Sharkey said "Grand Canyon" and I love that movie. (yeah, I know, but it made me think about the movie)

Maybe before the next appointment with the next doctor begins, hand them your research and say "Here, start with this and THEN you can poke on me and crud and I'll think about not firing your ass."

 
Blogger WILLIAM said...

There USED to be an ART to Medicine. Where a doctor could look at a person using a mix of science and TALENT to diagnos. Now it is all science.

You WILL find the answers very soon.

 
Anonymous RzDrms said...

thanks for this breakdown of your symptoms; this whole WTFrick Disease has me all kerfuddled. i'm convinced this all has something to do with the lithotripsy for your kidney stones...didn't you mention titanium staples or something? maybe an allergic reaction to those or to the anesthetic they gave you? maybe they left something inside of you if they cut you open? maybe something (food?) is poisoning you somehow (allergy?)? i'll keep praying, but i wish i knew more so i could try to help you.

 
Blogger Platypus said...

Susie sweetie, ALF as in your liver? Tell me not that. Have been Googling madly but apart from stupid anteater-like aliens I can't find stuff.

Thank you for giving us some details. I wish I could say something comforting or profound but I'm crying at the bloody awful unfairness of it all. I knew you were ill but I didn't realise how bad it was and how awful you have felt. Know that we are all praying for you.

I will come back later when I may make mopre sense. Loads of love from me to you. xx

 
Blogger whfropera said...

don't ever think that you have stopped being fun, funny, witty, snart, friendly or competent.

Because you would be SO WRONG.

Hugs and love from myself and Linus. I recommend some soothing classical music. :)

 
Blogger Susie said...

effie's ankles, go home! She's looking for you!

ck, I wish all that, too. Thank you for everything you do for me, all the time.

shawkey, I'm sorry your stepfather is going through that. I have heard from so many people who have mysterious, serious, undiagnosable things. It gets old, way before 5 years. Thank you for your prayers. I still believe.

ladybug, I've been thinking of you a lot, partly because I'm seeing ladybugs EVERYWHERE! Tons of them! They are a good sign, I believe. Thank you for your prayers. Keep up the good work.

mrB, how 'bout you meet me at the doc's office on Tuesday and tell him that? That sounds good.

william, you sound very authoritative, there. I choose to believe you.

raz, I saw some info that suggested it was possible that the lithotripsy could have damaged titanium clips that I had from a prior surgery. No one (M.D.) will listen to that theory, so far. I did see an allergist, who found nothing, and I was tested for celiac disease, which is an allergy to gluten (wheat) that can do some of these things.

platypus, I emailed. ALF is just my silly way of avoiding writing the actual illness that I have come to hate the sound, sight, thought of. Although the real illness is very much an evil alien. I believe I'll be OK. I just wish it were right now. Thank you for being there, for a long time, I know :)

thanks, operagirl, I like your prescription :)

 
Blogger SoozieQ said...

I read all this and I truly don't know what to say. I'm so sorry sounds SO stupid.

I sure you get some answers soon and not just answers but the answers you WANT to hear.

In fact, I'm mandating it. I have that power (at least I do in my own head).

Thank you for sharing this will all of us. You never know who this might actually help. Maybe someday someone will search for a symptom that you have and end up here. Think of the comfort they'll find in knowing they're not nuts either ;-)

 
Blogger Monica said...

Susie,
Thanks for sharing! Being a new visitor to your site, I have been wondering what WTF was-thanks for explaining.
My mom had similar struggles most of her life. She began having migraines in her 20's and by her late 20's they were occurring daily. If this wasn't enough, she was diagnosed with Fibromyalgia (when not many people knew what it was) in her mid-30's. My whole life, I watched my mom go to countless doctors, have every test imaginable performed to find the cause of her headaches (which she still had to deal with along with the Fibromyalgia), and slowly get addicted to narcotics because they actually took the pain away, temporarily. Sad to say, she did not have as good an attitude as yours. She had enough and took her life at the young age of 39. At the time, I did not realize all that was going on with her-physically & spiritually-& I did not have as much medical knowledge as I do now. I wish I could have done more to help, but who knows if she would have even listened.

I said all that to say this: Don't give up! You have God, your husband, & your children-& all of them love you. Not to mention, your blog family.
I'll be praying that God reveals this medical mystery to the doctors so they can effectively treat & cure you. I pray for wisdom, revelation, & knowledge to be shown to this rheumatologist you will be seeing soon.

What is ALF? Couldn't find much on the net. Liver??

Just remember: You & your family are in my prayers. Shalom & God Bless!

 
Blogger eclectic said...

Bless you, Susie. As a kid, I can remember fidgeting with impatience as my dad would pray for his patients, especially the ones for whom he had either no news, or bad news. I didn't know those people, and my knees were tired and my eyes didn't want to be closed, and I just wished he would stop. My perspective on that has changed now.

I've told you before that I'm not half-bad as an advocate. I'd be honored to accompany you to any appointment, or write letters on your behalf to request that they answer the questions you have brought to their attention. I can't bear you to feel alone. WTF is earning itself a big ol' number one spot on my "things to hate" list.

 
Blogger Lynn said...

Susie, I don't blame you for thinking this has something to do with the lithotripsy. This is what I think, too. Could something like this really be a coincidence? That just seems far fetched, doesn't it? Have you found anything on the internet about people encountering nerve damage of any kind after lithotripsy? Even people who just suspect a relationship between the two but cannot prove it? It's possible that doctors do not want to investigate this because of the fairly widespread use of this procedure - kind of like how the American Dental Association sees nothing wrong with putting mercury into people's teeth and letting them chew their food with it for a lifetime. It's hard for people who are in the business of helping to consider the possibility that they have done things to hurt people when they actually intended to help. Think 'unconscious group denial'.

Susie, though our situations are quite different, we are effected in some similar ways: Tattered career, isolation, worry, wanting to know, not wanting to know, wishing things could just be ok. I feel for you, Susie. I love you. I think help will come your way. Since you think that visualization is powerful, that's just what I'm going to do. I will visualize help for you, Susie. Competent, God-sent, skilled and compassionate help that will put an end to WTF once and for all. Peace and health to you, Susie.

 
Anonymous deneen said...

Well words escape me. I just want to say that I pray that you find comfort in knowing so many people care and wish you all the best.
The throat thing-WTF???-you are a mighty mighty woman to have put up with that-I would have gone mad by now.

I can only say to you that it is all gonna be ok. That I truly believe, one day it is all gonna be ok.

Sending you much love and much prayer from a semi-lurker,

Deneen

 
Blogger Lynn said...

Susie, can you look into this theory? -- Perhaps the lithotripsy caused Sympathic Reflex Dystrophy. It's possible. It wouldn't be popular with the docs, though. Let me know if you think there could be something to this. I wish I could travel. I would come with you to the docs. I still know how to crack some heads!

 
Anonymous kalki said...

Thanks for this post - I'd been hoping for an update. I was also hoping you'd have some answers.

Your posts have continued to be silly and witty and so you, and I'd taken comfort in that, hoping it meant you were feeling more like your old self. I'm so sorry you aren't. But I do hope this space is a place where you can be yourself and find at least a moment's mental reprieve from WTF.

You have maintained such grace and poise and perspective throughout this. Amazing.

 
Blogger Squirl said...

Susie, thank you for updating. Of course, I wish the news were better for you.

I find myself firmly in the lithotripsy camp. That's a heck of a coincidence. I wish so many doctors didn't assume that they're gods, as in, how dare a patient suggest something I don't understand/know about, etc.

Praying for you, sending good thoughts, hoping for a happy healthy Susie and a rapid end to WTF!

 
Blogger Mr. Bloggerific Himself said...

Ok, but if he pokes me in the wrong place, I'm going to fire his ass anyway!!

 
Blogger Platypus said...

Thanks for the update, Susie. We won't say the word, I understand ALF now.

I'm with SoozieQ. I. AM. NOT. HAVING. THIS. This is not allowed. I'm very angry on your behalf right now but I'm trying to turn it to positive thoughts rather than negative. I figure if I can send enough out into the cosmos then they'll reach you some time early on Friday morning so hang in there. :)

 
Blogger Monica said...

Thanks for the ALF clarification. I agree with you: You do not have this!

 
Blogger lawyerchik said...

That sucks. I'm sorry the symptoms and runarounds have been so bad for you! Just FYI, though, I had a friend who was having very weird neurological symptoms for no apparent reason, and the doctors were totally confused by what those symptoms meant.

They had varying differential diagnoses through the whole process, including MS, MD, ALS, etc., and after she left her very stressful job and moved to Kentucky, she didn't have her symptoms anymore.

They told her they never did figure out what it was, but they attributed it to massive stress overload. The symptoms and effects were objective symptoms; they just never found out what caused them.

Maybe your WTF is something that weirdly simple and it just goes away on its own....... Here's hoping!! :)

 
Blogger MrsDoF said...

Well, my goodness. I'd get tired typing all that even if I don't have a WTF problem.

There was a period of almost 3 years before my DOF got the diagnosis of fibromyalgia. Nobody believed us when we described symptoms!! so I know just what you are going through.

Thinking and praying for you and Jif and LG.
In fact, you are on the Long Term Names Prayer List.

 
Blogger Nina said...

Susie, I'm sitting here crying . . . You touched a nerve and I totally understand. You have my empathy and love.
The first four years after heart attack I wore myself out, bound and determined at all cost to still work full time. Three years ago I decided I couldn’t work full time anymore. I know I am better off but I still hate that I had to give up something that I truly loved doing. Three years later and I still hate that fact. Some days I still grieve for the woman I use to be and I’m sure I always will. I still help where and when I can but it is not quite the same. Enough of that, because you are going to get better.
I also want to let you know that I know a M.D. who thinks about you quite often. In fact just tonight as I drove him to the airport he asked what I have heard from you and if you had gotten any answers,yet?
Dr. John, well he has connections we may just have to have you come here to fix you up and send you home.
I love you and I understand . . . I wish you love, health, and laughter from the bottom of my broken heart.

 
Blogger Traci said...

Susie, honey, I came into my office just to check on you tonight. I'm glad I did. I wish there was more I could do than show up here daily. When I just don't wanna do whatever, I still come see you. I'll return now to my regularly scheduled life or lack thereof. Just know you are held close in spirit every day, every moment. Love you.

 
Anonymous Michelle said...

I am relatively new to reading your blog and just wanted to say I am rooting for you.

 
Blogger Karen said...

I knew what you were saying without your saying it. And I totally understand your not wanting to come right out and say it. That would be me, too. (Only it's not. I know that.)

I'm glad you wrote this post. It just helps to have the big picture. You write so well about the foibles of medical people, and those are enjoyable posts (for their humour, if not their content) -- but this is not sugar-coated, and you know what? It's still well worth reading.

Good for you for keeping at it, trying to find out, visiting doctors, taking tests. Remember all the people who love you, all the lives you've touched, all the people who are praying for you, thinking of you, sending positive energy your way. And don't forget to include me in the list.

 
Blogger Bucky Four-Eyes said...

Aw, sis...how big a pair of pliers do you think I'd need to come pull some doctors' heads out of their own asses? I hate it that they won't even consider looking into any of your suggestions.

That's it - I'm coming over there with my toolbox and a big baseball bat!

 
Blogger Bucky Four-Eyes said...

ps - I love the title of this post. :)

 
Blogger Lynn said...

Bucky'll fix 'em. I like that about her!

 
Blogger eclectic said...

Bucky, I'm new to power tools, but I've got a good head-hold, half-Nelson, and left-hook. Can I help?

 
Blogger Bucky Four-Eyes said...

Eclectic, Lynn, and anybody else who wants to come along - there are plenty of head-up-the-ass impaired doctors for all of us to have a tug.

 
Blogger Squirl said...

Okay, Susie, we've got family lining up here. What can we do first?

 
Blogger Susie said...

soozieq, don't be silly, you never sound stupid; just silly ;) It's good to have powerful friends like you, thanks for using your powers on my behalf. I do hope that somehow, someday, what I'm going through can help someone.

monica, I am so very sorry for what you've gone through, and what your mom went through. I imagine it was even worse for her back then, with even less access to info and support than I have. So tragic. Undiagnosed, or wrongly diagnosed illness is so isolating; no one who's not "in" it can really understand. Oh, my heart hurts for what you and your family went through, and am sure still have echoes of.
See the clarification. And thank you SO much for your prayers. Prayer is my best medicine now. And really, there's none better, so I'll try to stop complaining.

eclectic, I WISH I had a doc like your dad. I doubt seriously that any of mine are praying for me. Although I do for them. The picture that you paint of your dad and his children is so beautiful. And it is one more bit of an answer to the question, "How did Shari get to be so kind and compassionate?" Just lovely. xxx

lynn, I emailed you, but will repeat some of it in case someone else is reading here and might know something about lithotripsy:
I found ONE medical journal article about a woman whose titanium staples from a prior surgery were damaged during lithotripsy, making her very ill. I had titanium clips from gallbladder surgery years earlier. Following the lithotripsy, I had severe pain at the site of the clips for about 3 days. Everything started snowballing from there. I have suspected that the clips were pitted and my body has been reacting to small floating titanium since then. No doc buys this. As I've said, I was healthy before the litho.

deneen, thank you so much. I like to be mighty. I NEED to be mighty :)

lynn, I looked at that briefly; I don't have any of the skin things, but I'll put it on the list of things to ask the new doc about. You know how to crack heads? I know some crackheads. You say tomato . . .

kalki, thank you for saying such nice things :) I have my freaked-out, despairing moments. I do try to limit them and keep enjoying as much of my life as I can, and contributing as much as I can. And I still have MUCH for which to be thankful, so I am.

squirl, yea, I don't have the wiring to be a doc. If someone offers me some info that might help me do my job better, I'm happy to have it. At least to consider it, ESPECIALLY if I can't come up with anything better. I just don't understand why more of "them" don't see it that way.

mrB, yea, but think of what a great post that would make, "I went to Baltimore to help Susie with her doctor and . . . " heeheee BUT WAIT! Look at Lawyerchik's comment. You don't have to come here, 'cause I'm moving in with you. Ken-freakin'-tucky, here I come!

platypus, thank you for your determination. I'll borrow it from you, soozieq and others when mine gets droopy :)

monica, you're welcome, honey. Thank you, too.

lawyerchik, just going away on its own would be a wonderful thing. I know that stress can do all manner of things. Thing is, I didn't have extraordinary stress until the stress of WTF. But if moving to Kentucky would fix it...

mrsDoF, yea, and that was after I weeded out some of the symptoms so it wouldn't be too long :( I'm sure you all went through a lot getting to a fibromyalgia diagnosis. Thank you again for having me on your church's list. I hope to move to the Woo-hoo! Hallelujah! List someday.

nina, I know. Thank you so much. Sometimes the list of "next things I can do" seems so short and I panic, because I can't stay like this, or just wait to get worse. So I'm putting "go see Dr. John and his connections" on my list of possibilities :)

traci, thank you for being such a good friend. I fear I don't have much to offer in return these days, except my true gratitude.

thanks, michelle, any and all rooting is most appreciated :)

karen, thank you for your kindness and encouragement. Not trying to pursue answers really isn't an option, except that I do get so weary sometimes that days or even weeks pass when I don't do anything. But I can't stop. I have things to do, and people to see :)

bucky, yes, get your big tools out. heh. The title of this post is very multi-functional, is a sentiment that occurs to me often in a variety of contexts (thanks, Bob).

OK, it looks like there is a powerful posse forming here. That's POSSE. bucky, lynn, eclectic, squirl, if those docs know what's good for them, they won't mess with us anymore. Next week will be good. It will. (eclectic and her half-nelson. Ricky?)

 
Blogger Kat said...

So where is House when you need him? I am so sorry that you are going through this. I am so sorry that you are exhausted both physically and mentally. You are in my thoughts and prayers as you fight this battle.

 
Blogger Mr. Bloggerific Himself said...

It must be all the "fresh air" we have here.

You know where "fresh=cow exhaust"

 
Blogger WILLIAM said...

I think Bucky may have abusiness here. She can call it Bucky's HUAR. Head Up Ass Remover. HUAR sounds like Whore when you say it which I am sure Bucky would appreciate.

 
Blogger Bucky Four-Eyes said...

As long as it's a two-dollar HUAR, William.

 
Blogger stephlys said...

Hopefully it helps that those of us reading from before ALF know who you "are" and that you are not this illness. You are so much more and I am grateful to get to experience you in good times and in hard times.

 
Blogger Von Krankipantzen said...

The suckage is varied and intense. The not knowing, the unknown (which is different), the fear, the lack of control, the loss, the anxiety, the despair, the sadness, the pain, the discomfort, the frustration, the anger....and the list goes on and on.

You are always in my prayers. Continue to kick ass.

 
Anonymous M&Co. said...

Peace be with you.

 
Blogger Andrea said...

Love you, Susie.

And now I'm off to google lithotripsy in regards to kidney stones to figure out if, should I ever have kidney stones, it's something I should find an alternative to, however rare this possibility of WTF may be...

 
Blogger Susie said...

thank you, kat. A couple of docs have actually tried to refer me to House. I wish that were possible. I'll let y'all know when I'm going to be on TV.

mrB, I like cows. I'll be there.

william, bucky beat me to it. I was gonna say, "Wonder if she's a $2 HUAR." But she is. It is good to know that some things remain the same :)

stephlys, thank you for that. When symptoms are at their height, I don't feel like I'm much more than my illness. I struggle with that all the time.

kranki, thank you, honey. I feel I need to step up the ass-kicking. Too many days now I'm the kickee. Have to find my "that which doesn't kill us is gonna wish that it had" groove :)

peace to you, too, m&co.

andrea, even if it is not responsible for WTF, it is not the benign procedure that it was presented to be. I would try meds first if I had it to do again. Or, most people can wait for the stones to pass. I couldn't, the stone was too large and in a difficult location and "infectious."

 
Blogger mrtl said...

Dear Susie,

{{{{hug HUG hug HUG hug}}}}

I'd really like to do this in person.

I used to have a stuffed ALF. I don't know what happened to him. If he were still around, I'd do this to him in your honor.

 
Anonymous Maureen said...

I have read your blog for quite some time but never commented until I came acrossed this quote and immediately thought of you. I hope it is of some encouragement to you as you are to so many. " It is far more important to pray with a sense of the greatness of God than with a sense of the greatness of the problem."
Evangeline Blood

 
Anonymous Kelly said...

Susie, I check in on you every week and say a prayer for you at my desk. It has been you, and YOU alone, that has brought me back to the belief of prayer. Take care best you can doll, I wish I knew you in person, but please know that there's a Canadian heart on the East Coast that often thinks of you, LG and your husband.

 
Blogger Susie said...

mrtl, hopefully we can personally hug soon. See email. Yes, I would like to do that to ALF.

maureen, that's a wonderful quote, and fits very well with my morning. Thank you for that, it truly is encouraging :)

kelly, my day is now officially made. It means so much to me to believe that something good comes of this hobby. As honored as I am by your comment, I must say that I believe if you've come back to a belief in prayer, it's because God is inviting you back. I am humbled and honored to have gotten in the middle of that somehow, but it's between you and God, honey. Thank you so much for praying for us.

 
Blogger Amy said...

Susie. Just reading this now. All I can say is damn wtf to H and thank you for blogging when it hurts. Every time I come here and there is a new post from you I feel lucky that you are still hanging in there, even if it's by your poor dear claws.

Love you, Hate ALF.

 
Blogger Ortizzle said...

Oh, dear, I got here rather late!
Thank you for taking the time to write in such detail, I had no idea what WTF was all about, as I have only been reading a few months. Did not know about your symptoms, and I am so sorry that you are having to go through all of this.

Though I have only been reading a short time, I have come to love your blog, and I can't believe, now that I have read these details, that you can manage as well as you do, and still write such entertaining, funny, and full of life posts.

You are in my thoughts and prayers, Susie. Just one more drop in the ocean of friends that are thinking about you, but every little bit helps. ((( ))))

 
Anonymous peaches said...

I, also, had the initial thought of the lithotripsy. The fact that docs wont give it the time of day is just infuriating.

I so very much understand the frustration and not knowing. For me, it was just over a year, with no diagnosis, then one, then two- turned out to be neither of them. Finally, a true diagnosis, and surgery last Thursday, and hopefully after i'm recovered from that things will be back to normal.

There was a time I thought I couldnt live like this anymore. Its devistating on yourself, your family and friends. Isolation seems so much easier, and having no energy makes isolation very comfortable.

I know I havent been around lately, but you're still in my thoughts and prayers always. I love you and pray for you and your family- dont every forget that.

Love,
Dawn

 
Blogger eclectic said...

*waving*

Hi Susie!


Just thought it'd be fun to see you high.

 
Anonymous Pat said...

I've been reading your blog for months but I'm not much of a commenter (commentor?). However, I've come back to this entry daily since you posted it and I'm filled with such compassion/angst that I can't help but commenting.

I've been praying for you daily (as I see many others are)and I know God hears. I'm sure my prayer resembles everyone elses - please, Lord, anything but that. Hang on to how much He loves you and sink back into His comfort when this all seems too much to bear. And I'll keep praying, please, Lord, anything but that.

 
Blogger mrtl said...

Email? mrtland at gmail dot com? Not there! Blech!

(responding here since I may not be using your correct email)

:)

 
Blogger dashababy said...

Susie,
I love you, xoxoox
Dashababymama

 
Blogger Squirl said...

Just stopped by to say hi!

 
Blogger Vajana said...

so glad you were able to break it down this way...it helps to understand.

And even though you started this blog to be funny, it is because you were funny that so many people worry and care about you!

I wish I could to your ALF what mrtl's video portrayed. That was lovely.

Lots of hugs to you Susie!

 
Blogger Bucky Four-Eyes said...

"I'm older now but still runnin' against the wind."

Does that mean Bob Seger is a mime? Or do they only walk against the wind?

 
Blogger Sometimes Saintly Nick said...

Dearest Susie, I read and re-read and thought and prayed about this post for two days. Maybe I thought the sky would open and some great insight (or even illustrious words) would strike me like a bolt of lightening. It didn’t. So all I can do it say how much I care for you and pray for you and hope for you.

Shalom, Love, and Many Blessings to You.

 
Blogger Lynn said...

I know it's not Sunday yet, but I came over anyway. Hi, Susie!

 
Anonymous marcia said...

Delurking from over the pond to say Susie have you ever tried going to a properly qualified Chinese Acupuncturist? He may not be able to diagnose in our way but he would be able to help your symptoms. It's the only thing that has ever helped me after 50 years of migraine. Keeps me sane. Just a thought.

 
Anonymous marcia said...

Delurking from over the pond to say have you ever thought of going to a properly qualified Chinese Acupncturist? They might not be able to diagnose in our way but the treatments are fantastic. It's the only thing that keeps me sane after fifty hears of medics not being interested in migraine because they can't cure it. Just a thought.

 
Blogger Squirl said...

Good Sunday morning, sis. :)

 
Blogger Susie said...

amy, thank you, and I'm thankful every time I come here and see that you lovely people are still checking in, even when I'm not much fun any more.

ortizzle, oh, not just a drop in the ocean. A . . . flower in the bouquet. Every one is important :) Thank you for reading, and for your kindness.

peaches, I think of you often, too. I hope this surgery puts you on the road to good health, and that you arrive there very, very soon. You have my prayers, as well.

eclectic, what? You're high? Thanks for sharing. :p

pat, thank you so much for letting me know you were here, and for your prayers. Today I'm really praying for a doctor (or more) who will listen. The responses to this post have given me new energy to keep telling the docs what I suspect until someone listens. I am SO thankful for your prayers, please keep up the good work.

mrtl, gotcha in email :) Talk to you soon, have a safe trip.

dashababymama, love you, too :)

squirl, hi! waving like high eclectic

jana, thank you, it's nice to see you :)

bucky, yes, an OLD mime.

ssnick, thank you, friend, it's good to see you out and about. I am hopeful that the new doc will listen -- to me, to God -- and have some ideas about what to do. That's Tuesday afternoon.

lynn, hi :) Thank you for your research. It's Sunday now!

marcia, thanks for letting me know you were here. Acupuncture is on my list of possibilities. I guess I haven't pursued it yet because pain isn't a primary feature and I usually associate it with pain relief. I know it has other applications, though, and I do know of a good one I can try. Thanks for thinking of me.

squirl, hi! I'll be coming to "church" in a minute :)

 
Blogger Toady Joe said...

Thanks for the honest and open sharing of your experience. Sorry it took a while for me to get here, I've been having issues in my little world... but I'm here now, and sending you oodles of support & blessings. I wish you all the best in not only obtaining a diagnosis but a TREATMENT for WTF. And in it not being ALF. Hang in there.

 
Anonymous Anonymous said...

Hmmm. Interesting. You live on the east coast. And you have intermittent, perhaps palindromic symptoms. Have you considered neurotoxins from harmful algal blooms - pfiesteria perhaps? The kidney stones have me suspect perhaps an intermittent (autoimmune?) parathyroiditis. ALS suggestion makes me think of an atypical strain of a prion infection. Stanley Prusiner's work is about this. Hope you feel better!

 
Anonymous ~Kabe said...

Susie-of-the-Booty-Flies ~

I wish I could kick the Booty out of WTF for you.

And I am so awed by your humor and wit in the face of such difficulties. Sending blove your way!

 
Blogger Annejelynn said...

considering your circumstances, just do what you can - and that's enough...

and know you're loved!

 


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