You know how old I am now? Yes, I know over there it says I’m 32 but if you’ll recall there used to be a lot of dudes who commented on this site and a lot of them were the “aahhh I’m just giving you a hard time!” type, you know the ones? Of course you do. And they used to start commenting the SECOND that section of the site got out of date. “Um, aren’t you 30 now? Shouldn’t that say you live with your husband, not your boyfriend? Don’t you have a baby now?” Anyway, I’m sure you understand why I take great glee in just never updating that section of my site, ever. Actually, I intend to update it with my exact age and location in my house and what I’m wearing at 11:59pm on the night before my birthday, just because that’s who I am as a person and when you get to be my age (I am now an age where I think I can say “when you get to be my age,” partially because I spend a large part of every day interacting with young people who imagine my age not so much as a set point they themselves will eventually reach, but more of an abstract concept sort of phenomenon that happens to other people), you probably take great delight in making statements you can end with “because that’s who I am as a person” and being totally okay with that being who you are as a person.
You know how old I am now? I am “the last time I went to the doctor, I had shrunk” years old.
Why am I still getting measured at the doctor? Isn’t this something I can self report at this point in my life? Yes, I know, people shrink a bit, okay. But surely I have reached an age where “roughly this many” is good enough? Why do you even need to know? Yeah. Yeah, I know. You need my height because you need to put that plus my weight in your special formula to get my BMI which. Come on. You don’t need any of that. Why do you need my BMI? You don’t, you just really don’t. I get that there are situations in which weight needs to be monitored, like sudden loss or gain, or some kind of goal has been set, or… whatever, it’s between a doctor and whoever. But again, can I not just self-report? I’m this many tall and I weigh about this many.
If you need to prescribe something, you can say “Hey, hop on the ol scale there so we can get exactly how many to make sure I give you an effective treatment” or something, I guess. And for real. You really don’t need my BMI. You’re a goddamn doctor. If a person looks to you like they weigh too few, many less than the last time you saw them, and you Have Concerns of a legitimate and real medical type, are you going to have them hop up on the scale and check their height and if their BMI skooches them .01 into “REAL LOW NORMAL” instead of “POTENTIAL DANGER” are you just going to not be concerned? OF COURSE NOT, BECAUSE BMI IS STUPID AND YOU HAVE EYEBALLS AND DOCTOR KNOWLEDGE AND A SENSE FOR THESE THINGS. ONE. WOULD. ASSUME.
What I’m saying is, stop checking my height every goddamn time I come in to the doctor. I see some sort of doctor like twice a month. If a vertebra suddenly falls out or something, I promise to alert the nurse who takes my vitals. Otherwise, can we just agree to a rough sameness of height from now until I die? Because I really didn’t need to spend a whole day contemplating how thick the sole of my sneaker is, and how much of my foot is INSIDE the sole and how much is just decorative outer sole, and yeah I gave myself an extra inch when I got my driver’s license when I was 16 but I’m pretty sure I grew into that inch, and am I shrinking? I might have fallen below the original lie number.
You know what, hang on.
Okay, so I was pretty sure I had just psyched myself out about the shrinking thing, because actually I have always been 5’2″ and I don’t have a problem with that, I am not offended by short jokes nor do I think they are funny, because I’m just. Not tall. That’s not funny. It’s not insulting, either. It just is. And sometimes my family likes to joke like hahaha you were never 5’2″ as if I am extraordinarily small, as if any person walking on the street could look at me at a glance and say, oh no, that is not a full 62″, in no world is that human tall enough to be sixty two entire inches of human, but it is true, I have always been 5’2″, and I don’t think it is particularly short, and I don’t ever feel short, except this stupid house – we bought a house, did you know that? Anyway, it’s built for giants and that’s a whole other thing that is probably best served with pictures and I just made all this effort with a ruler because I couldn’t find a tape measure, so you will need to wait.
So it is the dead of night and I am crouched on the floor with a ruler trying to measure upward to my pencil mark, and I was so concentrated on getting it exactly right that I kept losing count of the feet (and thinking back, I did not really need to count the feet) and thinking, “I AM APPROACHING THE MARK TOO FAST, IT’S ONLY BEEN FOUR WALL RULERS.” Which is ridiculous, because I have always been 5’2″, but when the nurse measured me at this last appointment, I forget what kind, I think cardiologist, who cares, she said I was 5’2″ and a quarter and I looked at Phil triumphantly like, see? I have always been 5’2″ and I don’t understand why it’s funny to suggest I was less than that, because while there is nothing wrong with being less than that, nothing at all, I JUST DON’T SEE WHY IT IS FUNNY THAT I WOULD BE ONE NOT TALL HEIGHT INSTEAD OF ANOTHER NOT TALL HEIGHT. I’m just not tall and that is a NORMAL THING TO BE.
Anyway, the doctor was talking and my mind kept wandering to HOW MUCH SOLE IS ON THESE SHOES, and I had pretty well convinced myself, as you can see by the start of this post, which is about six exits back and there isn’t another for 14 more miles, that I had definitely shrunk, because yes the shoes put me over 5’2″, but HOW MUCH SHOE? And as this post went on I realized how ridiculous I was being – something that rarely stops me – that I do not wear platforms or shoes designed for any sort of activity that would require bulk of sole, and also that I totally could have solved this immediately upon arriving home instead of sitting here for a week contemplating my new “I’m not 5’2″ anymore” existence, so I went, just now – well, not just now because I also want to tell a story about Sheldon and probably won’t do that until the morning so this post will sit half finished until then – and I found the ruler and was ready to put this whole thing to rest and also myself to rest, comfortably stretching out the full 62″ I have always been, and anyway, suspense over, I’m 5’1″ and three quarters, so.
How have you been? Me? Same as ever. Promising I’m going to post about a thing and then not doing it, like how a couple hundred words ago I told you I had a story about my dog and the title of this post was even originally about my dog but then I just posted without it anyway, without even taking out the part where I referenced it, knowing full well this post now contains an outright lie about what I will post and when. If you think about it, in these troubling times, it’s really very comforting to know I haven’t changed at all, isn’t it?
How are thiiiiiiings? This is how my things are: yesterday was my kid’s birthday. She’s been around a long time now, but she’s not as tall as me yet so I think I’ve still got some time with her. She IS trending on the 50th percentile for height, though, whereas I am slightly… not… that… so maybe not too long. I can almost still lift her. Sort of. Her feet don’t get very far off the ground. She’s quite long. She made me take her picture before she went to sleep the night before her birthday so she could compare how tall she got when she woke up 7. She’s more of an art kid, not so much science and math. Very alien to me. My husband is… well he’s not here right now but I’m sure he’s fine. Whenever he’s out of sight he manages to find his way to some ice cream, so yeah, I’m sure he’s fine. For me, I have had, like, a million specialist appointments lately, none of which were expected to find anything crazy, but I still had to be subjected to them just in CASE. I am FINALLY down to only two appointments on my calendar – my neurologist, who might as well be my primary care doctor for as often as I have to go there, and ophthalmology, but that one is a YEAR away, as is normal, after a weird period of “Oh shit I need to see you back here in 4 months instead” followed by my neurologist saying “Actually we need you to see optho tomorrow.” But as usual everything is fine and my neurological condition (one of them) has not yet begun to render me blind.
So this is the kind of bullshit I have been dealing with, ok. My neuro sends me to a vestibular specialist just to CHECK. Nothing major expected, and there was nothing and it was fine, EXCEPT the said, so you’ve got some abnormal structure in your right ear and you need to see an ENT (ANOTHER ENT, THE FIRST ONE BEING A WHOLE OTHER THING), and I said okay, well, does it cause the symptoms I’m here for? And they said no, and I said, is it affecting my hearing? And they said yeah, probably some conductive hearing loss. And I said but you JUST TODAY tested my hearing and said it’s in the perfectly normal actually pretty excellent range. And they said, well, still, perhaps it is less excellent than it could be. Anyway, that ended with both my neuro and my primary care doctor saying “so you’re supposed to see an ENT” and me being like “nah I’m not doing that” because I am SO DONE with medical invasions that are meant to do nothing but confirm normalcy, I am at the very end of my rope. I even am wearing a 30 day heart monitor right now to CONFIRM THAT MY HEART IS FINE so they can confirm something else neurological (except no, I fell asleep, and it started screeching for some reason so I ripped the batteries out and it fell behind the bed. It’s now a 29 day monitor.) ANYWAY the OTHER ENT visit was apparently because I have a mega deviated septum with bone spurs, but I asked them if it was DOING anything to me and they said no but we can still fix it and I was like the hell you will. I REMAIN DEVIATED.
ANYway, that brings me to last week. I had to go see my primary care doctor to get her to sign off on me getting a PA drivers license because while Phil was active duty military I was allowed to carry an expired license, but it is TOO expired for them to just hand me a new one at this point. So I go to that appointment and it’s just a physical (AT WHICH SHE DENIES MY REQUEST AND REVOKES MY DRIVING PRIVILEGES BUT I’VE MOVED ON TO BEING ANGRY ABOUT SOMETHING ELSE SO FORGET THAT PART) and I tell her hey, so, like a year ago, I found this tiny lump in my forearm and I thought I was hallucinating it, but over the last 6 months or so, it started to grow – are you still reading all this? – and I think it’s a lipoma like my husband had, but I guess if anything starts to grow you should bring it up to your doctor. Especially since it went from a size where I thought I was hallucinating it to the point that you can not only easily feel it, you can SEE it from the outside. And she’s like yeah, and feels it, and says it SEEMS like a lipoma but she’s going to order an ultrasound, which was today.
So I go to the stupid ultrasound and I’m already mad, because it’s just a dumb test to confirm something is normal and it is so 99% likely to be entirely normal. And if for any reason it appeared slightly ABnormal, I knew they were going to have to do further tests only to come up with the exact same conclusion and I am SO TIRED of the doctor. Anyway, the ultrasound dude looks at my arm and says yeah, I see that, and feels it and I said, “I think it’s a lipoma” and he goes “seems like, but let’s take a look” and he puts on the gel and he’s scanning and scanning, turning my arm and scanning and scanning, feeling the bump and finding the edges and scanning the edges, and I was looking at the screen thinking I saw it and it just looked like blackness to me, or very similar to when I was pregnant, but I am certain I am not pregnant at all, let alone pregnant in the arm.
So he’s looking and looking and he says, it’s not there. I can’t see it. And I’m like, excuse me? It’s there. And he’s like, I know, I can feel it and I can see it on your arm, but it is not on the scan at all. And I asked, is that weird? And he’s like, “uh, yeah, a bit.” And I said, but it’s a lipoma? And he said, well, no, because a lipoma would show up as a bright area right here. Then what is it? No idea. It’s absolutely indistinguishable from muscle fiber, there is no way to see where it starts and ends or how deep it is or how big it is. It is there, he felt it, he can SEE it, my doctor felt it and can see it, but it declines to show itself.
What happens next will depend on how much my doctor believes in CYA, I guess, and the tech mentioned both MRI and waiting 6 months to see if it decides to change texture and show itself. Personally, I am firmly in the waiting six months camp, because I am just. so. done. With everything. With all of this. NORMAL TESTS THAT ARE SUPPOSED TO JUST SHOW THAT SOMETHING IS NORMAL AS SUSPECTED BUT REFUSE TO BE NORMAL ENOUGH TO JUST DROP IT. OVER IT.
Anyway, I guess to cover everything I will also say that after six years of being mysteriously ill in ways I have sometimes described here and sometimes kept entirely to myself, I have a diagnosis, myalgic encephalomyelitis, which is something I’m not entirely convinced actually exists, like I know a lot of you will feel if you look it up, which you shouldn’t, because it’s boring. And I’m in a weird position where, like, I don’t think this is real? But at the same time it is the current title for my particular collection of symptoms. But it is a diagnosis of elimination, and it makes me feel like the attitude is “well we’ve hit a dead end so here, you have this thing that may or may not be real, and we can’t prove, and there’s no cure or real treatment, good luck to you,” and on one hand, ok, it’s convenient to say I have this thing, so the collection of symptoms is instantly understood, but on the other hand, it is like, come on, keep looking, I refuse to accept that in 2018 you’ve just come to a dead end with no further suggestions, and on the other other hand, it’s embarrassing and weird because it’s one of those conditions with a stigma, because EVEN I DON’T FULLY BELIEVE IT’S REAL, so why would anyone else, so you MUST be able to find something else because no one even believes in this and I don’t want to carry this label and never be taken seriously by doctors again, which you know is going to happen, if not all of the time, at least some of the time.
But what I can tell you is this, that while maybe the condition is real or it is not real, the symptoms are real, and telling me, “oh yeah, I get really tired sometimes, too” is NOT going to go over well with me, even though I will nod and smile and not get into a pain olympics situation with you. And if I have learned anything at all over the last six years, it is two things: you need, NEED to really push for yourself with doctors. I have a crippling fear of being seen as “that patient” or drug seeking even though I flat REFUSE narcotics on the regular. I want to be taken seriously and somehow that has perverted itself into the idea that if I just go along with everything doctors say and I’m not too loud or too whiny or too annoying, they’ll think I’m a “good” patient and know I’m not dicking them around, but you know what, sometimes that works and sometimes YOU GET NOWHERE FOR SIX YEARS.
And the other thing I’ve learned is that… you shouldn’t… hm. How to put this? Don’t make chronically ill people prove to you how sick they are. I don’t mean doctors, I mean the general you. Don’t tell them “but you look fine,” and put them in the awkward position of being like, “well, I’m actually not” and listing off to you how life is garbage, because that makes everyone feel like garbage. If someone you know is sick and seems to be living a normal life, let them. I don’t know how to better explain it. Don’t make me whine to you. Just let me be. If I appear happy and healthy and having a good time, well, good for me. What a great day. Just let it be a great day.
Okay, so, that’s it. What’s up with you?
I think the thing is, it just feels better over here.
First of all, I’m going to acknowledge that I totally know that this is a part of life, a part of the specific life I deliberately signed up for, even. I know that. I fully know that. This is absolutely a post of straight bitching about a situation other people would consider themselves lucky to be in, with no redeeming humor or point of any kind. But that isn’t going to stop me bitching about it for even one second so here I go, no more preamble.
Penelope started pre-k a few weeks ago. I wasn’t too sunrise, sunset about the whole thing because the whole set up of the program she goes to so clearly indicates that it is pre kindergarten. She is not yet in kindergarten. She’s playing with other kids all day long and learning some basic social skills and generally getting the idea of the structure of going to school, but it’s three hours a day. It’s so clearly not actually school that I didn’t get very angsty about my baby growing up or anything like that. Though I also don’t think I will when she actually does go to kindergarten because that’s not really the kind of thing that gets me about my kid growing up. I do get where those sunrise, sunset people are coming from, though.
Anyway, here’s the standard “first day” shot so you can know it really happened and sunrise, sunset about Garlic Bread yourself, if that’s your style. I’m fine with that.
Like I said, she goes to school for three hours a day. Three hours, right in the middle of the day. We had our choice of a couple programs in our little town, which was nice. One was four days a week, 8am to 3pm. That just seemed like a little too much for my particular kid. It’s a decent program that a lot of parents around here like, but I just didn’t see Penny as ready to do such a long day almost every day. She had been going to an in home program one day a week for a full day for the whole summer, but four days… eh. I don’t know, you know your own kid, right? It just wasn’t the right one. So we decided on the 3 hour a day program. Our choices were 8am to 11am, or 11:30 to 2:30pm. We went back and forth a bit, who cares, but eventually we ended up doing the second session. So every day, I have to bring her out to school at 11:30.
Okay, first, you know we moved to this base in New Mexico. The town the base is “in” is actually about 15-20 minutes away. The base is just… by itself. In the middle of the desert. Which is fine, really, because if you’ve been on a military base, you know that you can kind of just stay there, without leaving, for long stretches of time. We’ve got a grocery store and a general-type store, a few quick service restaurants, a gas station, playgrounds, a pool, a library. Just like a tiny town of its own. Before Penny started pre-k, we didn’t go to the town all that often. Maybe once a week? There’s not much in the town, either. It’s just a small place also in the middle of nowhere, but it’s got basic needs covered. I don’t know, I’m trying not to talk badly about it because I’ve been here a year now and it’s been fine, but just infer something from my tone. It’s… fine.
So now she’s in school and I’ve got to come out here every day. We’ve only got the one car, so it’s a bit juggle-y right now. Phil goes to the gym every morning while Penny and I are still in bed, because he has to and we prefer to sleep. He comes home to shower, and on Mondays, Wednesdays, and Fridays, I take Penny to the same in-home care that she went to over the summer. She stays there those mornings so I can work. By the time I come home, Phil is usually dressed and ready to go, so I drive him out to work. He works in the bomb dump which is the most remote point on base, for reasons I’m sure you can imagine. That’s about a 20 minute round trip, and then I come home and work for awhile. Around 11, I go and get Penelope and take her to school in town. This is the same on Tuesdays and Thursdays, except that she hangs out with me at home in the morning and I take Phil to work or swap the car with him at his lunch time, depending on how his schedule is working that day.
Once I’ve taken her out to school, it’s 11:30, and I can either drive all the way back to the base and leave the house again to get her at 2, or I can hang out in town. Most days, I choose to sit at a coffee shop. I have some stuff I’m studying, or I have conference calls, and whatever, I kill the few hours until I have to go pick her up again. Sometimes I do go back home, but it just seems like a lot of gas and a lot of miles to put on the car to go back to the house to sit for a couple of hours and then come back out to town. It’s not like it’s a hard drive – there’s no traffic here and it’s just a straight shot. It just feels obnoxious to go back and forth twice a day. So I hang out by myself for three hours in relative peace and quiet, doing whatever I want to do. (I know.)
I pick Penny back up at 2:30 and then… it varies. Sometimes we run an errand. Sometimes we go get frozen yogurt. Sometimes we go right home. Regardless, we kill some time. If we go straight home, we’re there by about 2:50, 3pm, and we can sit there until 3:50, when it’s time to go get Phil. If we don’t go right home, I have to figure out some activity that’s going to take long enough to eat up the time til we can pick Phil up at work. Sometimes I work more after we get home, and sometimes I don’t.
So what’s the point of giving you this entire boring run down of my entire boring life? It’s that Penny starting school has been my first introduction to a major factor of life with kids. I knew that as she got older, she was going to get involved in activities and I’d have to spend time at practices and in waiting rooms and adjusting my schedule around her schedule as she became more and more busy with her own interests, but what I didn’t really ever think about was how much time I was going to spend in the motherfucking car.
A lot of it is a factor of where we live, how far we are from town, and the options available for her schooling. And also the fact that we have only one car. But still. Still. I spend so much goddamn time in the car. When the weekend ends, I’m not dreading the start of the week because I work during the week, which I do. I’m dreading getting back in the stupid car. And buckling her in an out of her car seat, oh my god. I will skip going to the grocery store six days in a row even if we’re out of every single one of the six foods she eats just to avoid buckling her in and out of her car seat one more time. Holy shit. It’s soul crushing.
So where am I going with all of this? Nowhere. I’m lucky, I know. I have a kid, I have a car. She gets to go to school and I get to sit by myself, undisturbed except for standard coffee shop creepers, almost every single day. I’m not going to layer in a whole bunch of garbage about how this situation is especially hard for me because of my personal situation right now, I don’t even need to add that to feel like bitching about this perfectly normal situation. Just. Holy shit. You guys. So much time in the car. I’m so sick of it, and it’s barely even started. This is just the pre-start. All the driving, all the awkward blocks of time I have to fill with errands I don’t actually have or just standing around being talked to by strangers in places I don’t want to be. It’s just the very start. You don’t even have to “just wait” me, because I know. I am staring down the many future years of trying to find a place to stick my useless self while I wait for my kid to be done doing whatever important thing she’s doing. I see it all and holy shit. I just wanted to say it.
This is a question I’ve asked before, sort of, and it’s been on my mind again recently. Not for any particular reason, I don’t think. I don’t think I even have my own answer off the top of my head. But I guess I’m interested in what you’ve got to say.
I think in the past I asked if you could think of a time where you had to make a choice, and you knew – or now know – that the choice you made at the time had a notable affect on the way your life went from them on. I guess I’m basically asking the same thing again, but with some refinements.
First, can you think of a specific decision you’ve made in your life – like do you right now remember what the choice was, and what your options were, and can you say what path that specific decision put your life on, and take a good guess at what you think might have happened if you made the other choice? Or one of the other choices, if there was more than one?
Maybe something like, on such and such a day, you decided to get coffee at a new place instead of your usual place. In doing that, you met the person who later introduced you to your husband. Had you gone to your usual place instead, you wouldn’t have met that person, and maybe you would have gone to more college and taken a totally different job and lived a whole new life because you didn’t meet your husband and decide together with him on a different career path for yourself. I mean something specific like that, where you can point to the exact choice that ended up leading your a certain way. Can you think of one of those in your life? Big or little. Can you bring one of those really specific choices to mind, even if at the time you were making the choice, it wasn’t obvious that it would end up being significant or the first step in a chain of events?
Now, I think the last time I asked a question like this, I stopped there, but today I have more to add. Starting with the obvious – if you could go back to that decision with all the knowledge you have now of the way that decision ended up pushing your life to the place it is now, would you make the same decision again? Like you made a choice that lead to you living in, say, Oklahoma, and another option would have lead you to California. Life is good in Oklahoma, but you can go back and make the choice again, leading to California instead, but with full memory of your Oklahoma life. If you apply that idea to the specific decision you have in mind, would you do it?
And how about this – if someone came to you right now and said something like, hey, remember that decision you made? I have a one time offer for you to go back to that day and make the opposite choice or pick a different option or whatever, and your life will go forward from that point, but without knowing what you know now about the way your life actually turned out. You get to get a do over, pick the other thing, without ever remembering what happened when you made the original choice. So, for example, if you had made a choice that lead to you living in Oklahoma and the other choice would have lead you to California, maybe you wouldn’t want to go back and change it because, you know, life in Oklahoma hasn’t turned out so bad and you don’t know that you’d want to miss out on that. But you’re getting the chance to make the California decision as if you’d never made the Oklahoma decision. You’d never know the difference or what you’d be missing. Then would you do it?
Anyway, I spend a lot of time laying really still and thinking, I guess.
This is all of my business.
So this post isn’t a “why I haven’t been posting” kind of post, it’s kind of just a post that’s come around to its time, in that all the reasons I had in the past for not posting this post kind of don’t matter to me anymore. Well, some of them do, but I’m more prepared to deal with them now than I was before and I guess if you’ve been reading here for any amount of time – okay, not any amount, a long amount – you know the kind of person I am and why I do and don’t post different things. And I didn’t post this for a long time for my own reasons and now I am posting it. As… you can see. And it will probably go a ways toward explaining where I’ve been or not been for the past… long, long time… but it’s not meant as an excuse because I don’t need an excuse or to make an apology, nor am an insinuating you’re waiting for one. I just feel like doing this now, so I’m doing it.
Let’s see, it was about three and a half years ago, I think, right before Penelope’s first birthday. I started feeling really, really dizzy. Like, all the time. I’ve always been kind of prone to fainting and dizzy spells, so initially, no big, but it just went on and on and on, to the point that I was like, “Is this my whole life now?” One day, it got so incredibly bad an unending that I ended up in the emergency room and was admitted to the hospital for a couple of days. I don’t know if I talked about that here, but I did then later mention the diagnosis that came out of it. The hospital neurologist happened to be visiting my room right as this insane blinding pain struck me, and was able to diagnose vestibular migraine. I’m pretty sure I did talk about that, because I wanted any information people had, because even after I left the hospital, I was still locked in horrible vertigo and was really concerned that it was about to be my whole life (spoiler alert!).
So I was dizzy. Sometimes just light headed and sometimes the kind of drunk spins. This is still pretty much true. It was really very terrible at first and it still is kind of terrible, but I’ve mostly adjusted. It’s like being on a boat all the time. For the first year or so, I couldn’t really drive much. Now I can drive, except when I can’t, if that makes sense. I can drive more often than I can’t drive, and I’m very aware of when I can’t be driving, so I don’t. And there were the headaches. Eventually to be known as intractable migraines, because they were… intractable. Nothing worked, at all. So for a couple years, I was seeing my neurologist as frequently as every three weeks, but no longer than three months in between visits. We tried varying kinds of medications to get the vertigo and migraines under control, with varying degrees of success. I spent a lot of time in bed.
Somewhere in here, maybe about two and a half or three years ago, my neurologist suggested I get a spinal tap to check on the pressure of the spinal fluid inside my spine and skull. Intercranial pressure. So I did, and listen, it was as terrible as you might imagine. I’m prone to fainting, but this spinal tap was done lying down assisted by x-ray, so since I was already lying down, I couldn’t faint. I was just stuck there, in a perma-almost-faint, for a really, really long time, because my doctor wanted a lot of fluid drained off. The results, however, were not what he was looking for.
About two years ago now, just before Phil was set to go on a 6 week TDY to Texas, things got kind of worse. The dizziness and headaches, of course, which were just always around by then, but worse. And on top of that, my whole body started to hurt. Like fever aches all the time, you know? It hurt if people touched me and it hurt to just sit. I spent a lot of time in my recliner doing nothing. And seeing my neurologist a lot. CT scans and MRIs repeated (oh yeah, I’d had a bunch of that done previously, too, when I was in the hospital), and my doctor says, “Have we done a spinal tap yet?”
This time, I cried before they even started.
And again, it took nearly an hour to drain off all the fluid and HE DIDN’T EVEN HAVE IT TESTED, JUST DISCARDED.
So the results, again, were not what he was looking for. But I had broken my glasses somewhere in here and finally got around to mentioning to my neuro that the ophthalmologist had said something about my eyes. So he looked in my eyes, too, and he decided that even though my intercranial pressure wasn’t quite what was needed for diagnosis, all my other symptoms – headache, unbearable fatigue, papilledema – lined up enough for him to start treating for a condition called pseudotumor cerebri or idiopathic intercranial hypertension. I’ve linked it there so you can look if you want, but basically it’s like it sounds – high pressure in the skull, caused either by excess production of spinal fluid or poor absorption of spinal fluid or just random high pressure mimics the symptoms of a large tumor. It’s not deadly, it’s just painful, and also causes blindness, so somewhere in here I saw an ophthalmologist again and a neuro ophthalmologist as well, but that was a whole OTHER THING that I can’t even go into because that was a mess.
So here we started trying a whole lot of other medications that had a whole lot of unpleasant side effects in an effort to get the pressure down. I was on and off Topamax several times, on and off hormonal birth control, on and off Diamox and Lasix and Verapamil. So many things. There was a long, color-coded chart pinned up in our kitchen so Phil could help sort out what medications I had to take when and what kinds of medications I could take with other medications, because mostly all I did was sleep. An entire year or two went by in here where I spent almost all of my time in bed, either laying very still or sleeping as much as possible. Not surprisingly, this is where I picked up watching Korean dramas.
And then we got orders to New Mexico. I talked a bit about what an enormous clusterfuck that was. Well, right before I left, I saw my neuro in Arizona one last time. I’d just tried Verapamil and HATED it. Now, I have had unpleasant side effects with almost every single medication I’ve tried, but nothing like Verapamil. I would try ANYTHING I’ve already tried again except for Verapamil. So I had to go off it, because hell no. But since I was leaving the state, my neurologist couldn’t put me on anything new because he wouldn’t be able to monitor me. So, we moved to New Mexico – Holloman AFB, specifically – where there is ONE neurologist. The next closest are an hour to an hour and a half away.
It took me several weeks to get the medical group here to process a referral for me. First they couldn’t see me for a month, then someone told me I should be able to get a referral without being seen in my situation, and like everything else ever medical and military, THAT took forever, too. When I finally DID get an appointment, it was still two months away, and that was the absolute soonest they could fit me in. So I stayed in bed and I slept a lot.
Anyway, time went by and I finally did get to see the doctor. It’s impossible to get in with him because he can only see a few patients a day because he spends FOREVER with every patient. By the time I saw him, I was a huge, huge wreck. Just sick and in pain and miserable. He went over all my records from the other doctor and the borderline results of my spinal taps, etc, and said he just didn’t see the same diagnosis. What he wanted to do, see, was a spinal tap. So they scheduled me for that for a month or so later and then, while they had the calendar open, scheduled me for the next available followup appointment as well – in June of 2015. It was about September of 2014 at this point, and he hadn’t even DONE anything yet, so I’m sure you can understand my distress, or nod along and pretend you do.
I have a second Twitter account where I prefer to keep medical stuff and general whining and I had only used it very occasionally to that point, but holy shit, did I rage and go back and forth over this spinal tap. I’ll do it. I won’t do it. This is stupid. Why can’t he just use the results I already have? Why does he need to look for himself? This is insane. And my previous spinal taps had been done in a hospital, with X-ray assistance. This doctor was just going to do this, right in the middle of his regular office. I know now that that’s common, but my first two TERRIBLE EXPERIENCES had been much more reassuringly hospitally.
Eventually, I did get the next spinal tap. Not before I quit all my medications in a rage and took to my bed for another month. These couple-few years here aren’t sketchy because I’m trying to be brief – ha! as if! – but because I mostly don’t remember them very well. Although I talk about sleeping a lot and a lot of pain and other discomfort, I really kept a fairly good attitude up until around this point. I got pretty good at aggressive bright siding and all of that. When this doctor suggested he thought the diagnosis was wrong, it kept me going a few months longer. Ok, NOW we’ll fix it because NOW we’ll know what’s wrong, right?
So the spinal tap. Terrible. So terrible. But probably the least terrible of the three I’d had. So the doctor got on my good side there. He also had the fluid he drained off tested, which put him more on my good side, because I didn’t end up feeling a quart low for nothing. But the results. Guess what. INCONCLUSIVE. He seemed fairly certain he was going to take his own poke at my spine and know one way or the other what we were dealing with, but no. Eventually, though, he, too, decided to go ahead and treat the pressure that he wasn’t sure was so elevated, but seemed like the best idea at the time.
FROM INSIDE MY SPINE.
So I started taking this blood pressure medicine called Atenolol. This was about last November, I think. For the first time in years I was down to like, a single pill or two at night instead of a giant ziploc of various prescriptions. I went with what he suggested, because why the fuck not. At first, when I saw him, he and his assistant seemed to think I was attached to the pseudotumor cerebri (PTC) diagnosis. Like I came in there saying, “this is what I have and I need you to treat it,” and that’s why I came out of my first appointment with such a negative impression. Well, that and the fact that he ordered another spinal tap. But eventually we saw eye to eye – I don’t care if he never gave me a diagnosis of any sort. Did not care, still do not care. Find a treatment and name the condition boobafalooba. Don’t give a shit. If you think you can fix it, I don’t care what it is.
Once we saw eye to eye there, I was totally comfortable just giving the new prescription a shot, because what else did I have going on? So I took it and within two weeks? Maybe three? I felt notably better. The headache would fade in and out through the day. Then there were days where I only had a headache when I woke up or stood up too fast. I stopped screaming every time I sneezed. Then, without even really noticing it, I didn’t have a headache at all. I lost track of my bag of various painkillers because months went by without touching it. Anyway. Feeling good. I started meeting people and joining things and taking my kid places and generally participating in my own life. That June 2015 followup appointment rolled around and I pretty much skipped into my appointment. “HELLO! I AM AWESOME! THANK YOU! SEE YOU IN A YEAR!” And I took my little appointment card for a June 2016 appointment.
Something weird about my first neurologist – he never once suggested I lose weight, even when he suspected a PTC diagnosis and even treated for it. I don’t know if he was afraid to suggest it or thought it wasn’t an issue or thought I’d flip out or what, but while PTC isn’t always weight related, studies have clearly shown that losing as little as 6% of your body weight can actually go a long way toward resolving it completely in those cases that are weight related. My new neuro didn’t hesitate to suggest it, totally matter of factly, like you want a doctor to do if they’re going to discuss your weight. Look, if this IS PTC, if you lose weight, you’ll very likely get better.
Well, after 6 or 7 or so months of not feeling like garbage and not laying around like a sack of garbage, I stopped eating like garbage, too. I started a keto diet, and you can look that up and maybe I’ll talk more about it some other time, and by the time I went to that June appointment, I was something like 20 lbs down. As of today, I’m 35 lbs down. That’s more than 6% of my body weight, just so you know. I was feeling better, doing better, and figured I could take advantage of that and knock this shit out once and for all right? It’s been going well, no signs of weight loss slowing or anything, and I carry on.
Which is why it was so surprising, in July, when crazy vertigo set in. And then a few days later, my whole body started to hurt. And then came the headache. Just blinding headache. I felt a comical level of betrayal. I’d had an untreatable headache every single day for years, but this was somehow just such a shock. I was so bewildered. I don’t even know how to put it into words. It was surreal, because it couldn’t be happening, but it was.
My pills always came in this blister packaging, but my most recent refill had come loose in a bottle instead. I latched on to that as the only reasonable explanation for what was happening. A new kind of headache had developed as well, one I later came to find out is called an ice pick headache, where you just suddenly get stabbed in one spot in your head for a really short time, but you’re definitely certain the whole time that an aneurysm has burst and you’re definitely going to die, and then it’s just as suddenly over and you’re not dead after all. So this made me firmly convinced I was being poisoned by a mistake in my pills, because WHAT ELSE COULD IT BE? I called the pharmacy two or three times to follow up on it, but it wasn’t the pills. They were exactly the same, just in a different package. So, just a month after I’d been in my neuro’s office telling them how awesome everything is, I had to call back to make an appointment to be seen as soon as possible.
Of course, I needed my referral updated, and that involves military healthcare, soooo that ended up being last Thursday.
My doctor and his assistant, who I now really like and trust, were with me for almost an hour, I think. We went over everything that had been happening, and a couple things I listed made my doctor finally pretty certain that we’re dealing with PTC for sure. We’ve been kind of operating under that assumption for years now, but with different test results and different doctors saying different things, it’s always been kind of an unconfirmed hunch rather than a firm diagnosis. The fact that I have a really hard time staying awake seemed to seal it for him. He said, “Yep, that’s PTC.” But on top of that, now rather than trying to decide whether we’re dealing with PTC OR a different type of migraine condition, he’s decided we’re dealing with both. Migraines, common. PTC, not so much. Not unheard of, but I feel a great sense of injustice considering I still do firmly consider myself to be the most average person on earth, which should excuse me from all uncommon conditions, just as a matter of odds.
So they gave me a new abortive headache medicine to try, Relpax. It’s decent. I got a prescription after trying a couple samples. And I’m on a course of steroids to try to break the month long+ headache I’ve been dealing with. They’re eating away at it, but let me tell you, they are not being as kind to my ability to stick to my diet. I have to go to the ophthalmologist again, of course, to make sure I’m still not going blind. Did I follow that up before? Not going blind yet, as of last tests, but because of the pressure, I have to keep getting checked.
I was so offended, though, still. Because I’ve lost so much weight. The doctor even said I am doing so well and I’m still going. And I was LEAD TO BELIEVE that even 6% of my body weight would DO SOMETHING. I’m due MULTIPLE SOMETHINGS. I want a refund. I want a refund, and I want a potato. He said well, no, unfortunately, there’s no magic number where you’ll see a result (THERE IS. I READ IT. IT’s 6%.), and double unfortunately, some cases of PTC aren’t weight related at all, so even getting down to a totally ideal weight might not resolve the condition. I want two potatoes.
Sitting there and talking to them, I was reminded of the first time my Arizona neurologist decided to treat for PTC. I asked him, “It can be fixed, though, right?” And he said, “… (PRACTICALLY AUDIBLE DOT DOT DOT) it can be managed.” And after 8 months of feeling like there wasn’t a single thing wrong with me and it was totally fixed, I was right back there. Not fixed, only managed. And now it needs to be re-managed. And maybe it will need to be re-managed and re-re-managed and re-re-re-managed over and over forever. And that suddenly seems like a long time.
When this all started, it was really easy to keep trying stuff and doing whatever because of course it was going to be fixed with the next thing we tried or maybe the one after that. It took me literal years to fall into a pretty deep mope over how limited life had gotten. You’d think this time, after feeling so great for so long, it would take even longer to get all hopeless again, but it was much, much faster. I’ve been having a real good sulk now for weeks. It doesn’t help that I’ve developed a cold, and sneezing is the absolute worst thing to happen to me all day, aside from waking up. Waking up is awful.
But anyway, here we go again with trying to figure out a way to get back on track, and guess how it starts?
With a spinal tap!
1. I want to end emails and other text-based requests with “Thanks.” rather than “Thanks!”
You’ve encountered this, right? I think this is the best example, so I started with it so you can get bored and leave any time after this point. Have you ever noticed feeling like you’re supposed to put that exclamation point there, even if you’re not feeling at ALL exclaimy? Do you ever feel obligated to stick that explanation point on, even if you’re really annoyed, because the word looks rude without it? And then you can run into that thing where the person you’re emailing KNOWS you’re annoyed and KNOWS your exclamation point is disingenuous and non-sincere, so it NOW looks snarky, but you have to do it anyway, because it would be RUDE not to.
I know it’s totally possible to skip the exclamation point, and I know some people have no problem doing it, and it’s never even occurred to others to use an exclamation point when they don’t feel it suits their current mood and level of enthusiastic emphasis. Of course there are people like that and maybe you’re one of them, and it’s great that you’re not held captive to punctuation angst. But for me, and others like me, because there definitely are others like me and I’m not totally out of left field with this one, I would really like to evolve past the compulsory exclamation point. I mean, maybe you’re being firm, not rude. Maybe it’s an email that just requires a “Thanks.” and not a “Thanks!” But when you (I) hover over the send button without adding that exclamation point, you (I) have a moment of sincere doubt, just knowing it’s possible for someone to take personal offense to your tone.
And here’s the thing, maybe your tone is totally intended! Maybe you really don’t WANT to sound perky and chipper as an exclamation point implies. But knowing that people of a certain sort take personal offense to tone, you have to fake the tone. Which is a whole new level of self-insulting and I’m getting agitated about it which means I’m about to type the same point 15 different ways until I feel like my rage has been stamped out via my fingertips.
Let me skip all that and save some irritation for the other points you may or may not read. It’s not so much that the exclamation point is required, but that the tone associated with the exclamation point is required, therefore necessitating that exclamation point after the word thanks. Should you neglect to use it, your email may be read with a firm or – heaven forfend – even strident tone, which would be unforgivable, EVEN IF YOU WERE, IN FACT, BEING FIRM AND STRIDENT AS YOU TYPED IT.
And look – I know people are super sensitive to pointing stuff like this out – but I just quizzed my husband, who sends emails all day, on how he feels about not adding an exclamation point to the word thanks at the end of an email, and it’s honestly never crossed his mind that it’s a thing. I really don’t think men spend as much time thinking about how their tone will be perceived in an email in such detail that the punctuation after the word thanks is a huge concern. But I do. I have consciously gone back and forth over a single point of punctuation after a single word in an email, and if I’ve done it, based on my theory of being the most average person on earth, plenty of other people have as well.
That’s this point. I want to be able to not use it without angsting over it. I want to move past it, like I know many people have managed. If I’m feeling “thanks” instead of “thanks!,” I want to say that without giving a rip what the other person may interpret about my tone. EXCLAMATION POINT DELIBERATELY LEFT OFF TO FORM A NEUTRAL CLOSING.
2. I want to be able to disagree with someone without conceding their point.
So, if you’re brave enough to disagree with someone on Twitter, you’re being stupid and it’s not worth your time because other people are landmines that will ruin your day on purpose. In general, it is impossible to disagree with the standard Twitter person without insinuation that you’re starting a fight, being a mean girl, or attacking someone. Just… just fucking stop it with that.
But aside from that, say you (I) see someone make a point you disagree with. Your choices are this: say nothing, do nothing, close the computer, move on, pretend you never saw anything at all, possibly move. OR, say, “Hey, I disagree with that.”
I’m skipping over the people who believe that when two adults disagree, they’re fighting and do that whole thing where they watch the “fight” and type instigatey little sub tweets without @-ing anyone. You people just fucking suck so hard. Stop it. Just join in the conversation. It’s a free Twitter and you’re allowed. But I’m skipping that because it’s just… it’s too much for me to work though with appropriate polite punctuation while I’m still sitting in bed in the morning.
Skipping that. Instead, just the simple scenario. You’ve gone and done it and you’ve spoken up and said, “I disagree with that.” So, assuming two normal adults, you go back and forth a bit about your conflicting opinions, and somehow, by the grace of Superman, you manage to escape the attention of the subtweeting instigators and just go back and forth with each other.
Eventually, that conversation has to end, right? Do you ever feel obligated – and I know some of you never do and that’s fine – to formally end the discussion with some kind of, “Oh, well, I guess we’re both right! Nice talking to you!” sort of gesture? EVEN IF YOU TOTALLY DON’T BELIEVE THE OTHER PERSON IS RIGHT AT ALL?
It’s just the polite thing to do. It seems that in a lot of social media, people are unable to consider a conversation closed and fully resolved unless both parties agree to give a little ground to each other or something like that. And if you don’t, you are fighting and being mean and rude. Sometimes I don’t want to give any ground and I don’t think you’re also kind of right and I think I’m ALL THE WAY right, and I don’t respect your opinion at all (thought of course I respect your right to have an opinion, even if it’s a dumb one) and I want to end the conversation there with YOU KNOWING that I don’t think you’re right. And I want that to not feel rude. I want to be totally at ease with being firm about how wrong I think you are without you – or the peanut gallery – assuming we now hate each other because I was such a dick for not just agreeing with you.
That needs to be a thing that’s allowed. Or a thing I allow myself, because no one is actually in charge of that. I need to be able to say, hey, you’re wrong, I’m always going to think you’re wrong, and I’m not going to acknowledge that you might be a little right BECAUSE THAT WOULD BE A HUGE LIE BECAUSE YOU ARE SO WRONG. And the other person should feel able to do the same thing with me. And life should move on.
Actually, I don’t have trouble doing this one. I do usually have trouble with my surprise over other people’s attitude toward it. I’ve disagreed with a casual Twitter friend before, you know, just talking away on Twitter about our opinions about something dumb, and had the other person say something about how she wishes we weren’t fighting. We’re not! I’m just telling you that I believe you’re wrong and you believe I’m wrong and that’s totally something adult people can do in real life except apparently not on social media. If I haven’t called someone a fuckface for her opinion, I really don’t think it’s crossed the line into rude.
3. There was a whole other thing here I decided wasn’t worth the hassle, which kind of perfectly illustrates my overall point.
Anyway. Here’s something else instead of what I had here before. On a work forum the other day, I saw a woman say, “I don’t mean to sound firm, but…” WHY DON’T YOU MEAN TO SOUND FIRM? YOU’RE MAKING A POINT. YOU CAN BE FIRM. How have the niceness police gotten so out of control that a woman completely denies being “firm,” even when she’s speaking about something she feels very strongly about? How have things gotten to the point that rudeness is an unforgivable affront, and “non-super-niceness” is the new rude?
I want to be done with all of this, because it’s weird an inappropriate for me to worry that I’m being mean and rude when I’m just being neutral. I don’t want Penelope to grow up thinking being rude is okay, but I also don’t want her to feel like she needs to let that dude with the bananas go ahead of her in the shopping line just because it’s expected, if she doesn’t feel like it.
I know these are all me things and not every person questions how other people might view her motivations if she says what she wants to say the way she wants to say it. And truthfully, the older I get, the less fucks I have to give about this kind of stuff because the people who know me as a person know who I am and if someone else wants to deliberately misinterpret me, fine. Go ahead. Don’t like me. The point in life where you realize you absolutely do not need everyone to like you has probably been the highlight of my life so far. But how, as an adult, am I still worried about a stupid exclamation point at the end of an email? How is that a thing?
As always, I flame out spectacularly when trying to pull everything together into a cohesive topic with one real conclusion. I guess I don’t have an overarching conclusion. I’m frustrated and I have been for a long time, and I’m kind of putting it out there to get that whole “yeah, me too!” thing that the people who read this blog have always been good for, with other examples of the same phenomenon and how they (you) think about the whole thing and how you cope or don’t cope with it, even if it is also a 2000 word rambling epic with no actual conclusion but just random fist shaking at the sky.