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:
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
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