Temerity Jane
01. 09. 2015

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.



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!

56 responses to “Why the hell not.”

  1. Terri says:

    Holy shit-I cannot imagine dealing with all you have been going through! Seriously-holy shit. I don’t even know what to say. Hope things get back on track and you are able to feel (at least mostly) normal again. You are a badass.

    TJ Reply:

    I’m sure now that I’ve made a big 3000 word post about it, I’ll be feeling better and looking foolish for making a fuss any moment.

  2. Jesabes says:

    Holy shitballs. This is horrific! You deserve MANY potatoes. I hope you get them.

    TJ Reply:

    I’m going to continue to stay away from the potatoes. For NOW. But my patience has a limit and it’s coming up quickly.

  3. Swistle says:

    Spinal taps ALL AROUND! Spinal taps FOR EVERYONE!

    Wendy Reply:

    I’m pretty sure that was the lowest rated Oprah episode EVER.

    TJ Reply:

    I’ll see if we can get you in the same day as me. We can cheer each other one.

  4. julie says:

    Gosh this is terrible, glad you have a good relationship with the Doc, hopefully improves soon.

    TJ Reply:

    I was surprised because I had an admittedly bad attitude about the single doctor in the small town, but he is pretty great, so I’m sure I’ll be straightened up soon.

  5. Cari says:

    i still wonder about your mess, especially if you were getting a generic.

    Here’s why:

    My Mom has a number of neurological issues that keep her on three different anti-convulsants. One – Depakote – she’s been taking as strictly name brand for years because the generic gave her an allergic reaction. Another – Klonopin – she takes as a generic with no issue. The third – Topamax – she took as a generic for a very long time.

    Then, last summer, she started having seizures again. Hers are focal seizures that are the result of multiple strokes. For her this meant her left arm twitched and cramped painfully. When the seizures started again, she was seizing 6-10 times AN HOUR.

    Her neurologist is amazing and he got it all under control and she’s fine now. She did have about a six week recovery time in terms of regaining use of that arm and hand. However, here’s where the mess come in – we are certain that she received a bad batch of generic Topamax – that likely had up to 50% LESS effective ingredient in it than it should have. One of the ways they resolved the issue was to out her on the name brand drug ONLY.

    So. If your generic Atenolol changed and you started getting symptoms again, that makes me suspicious. Maybe you can discuss using the name brand with your doc.

    Just my random two cents. I hope you get back to feeling normal again. If you want to chat,mom on Twitter – @mattieflap

    TJ Reply:

    So when I first called the pharmacy, they said, “Yes, it’s a different manufacturer,” and I was like, AH HA. But then I spoke to the pharmacist and he insisted up and down that the pills are the exact same, just different packaging. That they preferred to use blister packaging because it’s just easier all around, but sometimes got loose pills. I don’t know, I was up in the air about believing that, too, because the timing just seemed right on. But I’ve been back on the normal packaging for a while now, with no improvement. So either they were the same, or the loose pills poisoned me REALLY WELL.

    Cari Reply:

    Yes, my Mom’s pharmacy swore up and down they were the same damn pills but hey! Guess what? They weren’t!

    I’m sorry if I was shoving useless information at you or making you feel unsupported. Your situation just reminded me a lot of what I’ve seen my Mom deal with. My husband had chronic migraine, too, but not on this order. Bad enough the way his is. I cannot imagine what you are dealing with.

    So. As someone else said, you get an entire Idaho of potatoes.

    Cari Reply:

    One other thing – my post was riddled with typos (thanks, autocorrect!) and it should have read “I’m on Twitter – @mattieflap” My mother wouldn’t know what Twitter was if it hit her in the face.

    Natalie Reply:

    I admit I was pretty impressed your mom was on Twitter.

  6. Melissa says:

    I’m so sorry it didn’t just stay managed – you deserve all the potatoes. I’m glad you have a doctor you’re comfortable with and trust. I hope he hits on the right treatment quickly.

    TJ Reply:

    I feel pretty sure that he’s going to nail it. I was suspicious about this guy at first, because of course I was, and this current situation sucks, but he’s not one to toss up his hands and say oh well, you know?

  7. Delicia says:

    Holy hell, this utterly sucks. I must say, from my far sideline observations, Penny is turning out awesomely, so kudos to you for somehow managing to parent a small child through all this shit. I hope your remanage gets it settled back down asap. I’m pretty sure you should make a Bingo card like the Dr. House one for your medical problems, with spaces like, “Doc orders spinal tap” and “in pain but makeup looks kickass”

    TJ Reply:

    Penny is turning out well probably because Phil is doing all the raising while I sleep!

  8. Julie says:

    Oh, TJ, I am so very sorry. This is a whole shit-pile of shitty shit. You deserve a lot of potatoes.

  9. Dr. Maureen says:

    This is terrible. So terrible. I’m so sorry.

  10. Meaghan says:

    Oh. I’m so sorry. I knew something was going on, but hoped it had resolved itself. I have IBS, which is also “managed” and it isn’t nearly as debilitating as your situation, but I am always living in fear of a flare that will go on for months. I can manage it better now though, just recognizing and acknowledging the situation is hard, but each year I can do it better. Hugs, that really stinks.

    LeighTX Reply:

    My daughter has IBS too, and she’ll be doing great for weeks or even months and then have a terrible flare for no apparent reason. It sucks.

    TJ Reply:

    I think regardless of debilitating quality, chronic illness in general has a kind of overhanging dread of what’s going to happen in the future, no matter what kind it is.

  11. Ryan says:

    Oh, Kelly. I’m so sorry. It all just sucks. You are all in my thoughts and prayers.

  12. Faith says:

    ALLLLLLL THE POTATOES. I get those ice pick headaches, and they’re super annoying, but at least they go away as quickly as they start. But dealing with all the other stuff on top of raising Penny? All the goddamn potatoes in the world.

  13. H says:

    This is beyond terrible and you are one hell of a strong person. Kudos to you! I hope this gets resolved soon.

  14. Tric says:

    Forget potatoes, you just deserve all of the carbs. Ever. That is completely mind boggling for a single person to have to deal with. I’m so sorry.

    TJ Reply:

    Don’t worry, I make sure Phil has to deal with it, too.

  15. Lynnette says:

    I hate this. This is the very worst. You deserve an Idaho’s worth of potatoes.

  16. Katie says:

    Kelly. Oh Kelly.

    I understand so much of what you’re feeling, I mean, I don’t know exactly, but I’ve had a very similar set of issues and the level of terrible is so high. (Overshare warning) I had a headache every moment of every day for well over a year. They thought it was PTC because it’s common in people with the other brain condition I have, but after 4 spinal taps they discovered that I have the opposite of PTC. My body doesn’t produce enough spinal fluid, which basically means that my brain is constantly being tugged downward into my spine and it feels just like it sounds. I feel best when pregnant because being pregnant increases my intracranial pressure. And even though I had a headache for over a year, because I don’t have them constantly now, a few days makes me feel like I’m dying.

    Living with pain and dizziness is horrible for so many reasons. I’m so sorry you’ve been doing this for so long. If there’s every anything I can do, even just listen since I’ve seriously been here, please let me know. I also have a friend who had PTC (eventually had a shunt placed and now has no lingering symptoms)- let me know if you want to get in touch with her.

    TJ Reply:

    Fortunately we’re not discussing any kind of surgery at this point (and I hope we never do). I guess I’m a giant wiener, but I am SO NOT INTO head surgery or even the idea of it.

  17. Imalinata says:

    Omg, that’s awful. And having to deal with a toddler and a major move and everything else through all of that? Ugh, terrible. :( I hope that it gets brought under control sooner rather than later.

  18. Rayne says:

    I’m sorry you have been & continue to deal with this. My niece gets somewhat regular spinal taps to manage her headaches and I know it’s terrible. Sending healing managing pain-free thoughts your way.

  19. Kathleen says:

    Oh geez, this is the worst and I’m so sorry.

  20. LeighTX says:

    I am so sorry you’ve had to deal with all this. The pill thing makes me suspicious–my daughter has had that type of thing happen with her colitis medication, and the pharmacy will swear it’s the same thing but I’ve gone so far as to contact the manufacturer only to find that they had indeed made a small change to the formula.

    I wish I had magic words for you, to make it all better. This just sucks, and I’m sorry. :(

    TJ Reply:

    I admit I’m still kind of suspicious as well, but I’m back on the normal stuff now, so if it’s the medication, maybe I’ll start to be better really soon.

  21. Emily says:

    I keep writing things to express how shitty I think this whole thing is but everything sounds (to me) totally not helpful or really worth sharing so I just want to say that I am so sorry that your brain is being such a bitch AND that you have to do ANOTHER effing spinal tap. Hopefully you and your doc can get everything back under control so you can go back to skipping.
    Congrats on the weight loss. It’s so hard to do that when you feel crappy.

    TJ Reply:


  22. Sunshine says:

    I want to invent a potato that will fix this for you. I am sorry that you are dealing with this. Chronic health issues are a complete bitch.

  23. ann says:

    It never ceases to amaze me that with all the advances in medical science, all the amazing new drugs, fancy machines, and humiliating or painful tests, that the most common diagnosis is “inconclusive”.
    The other thing that boggles my mind is the number of side effects that drugs have. It might fix the initial problem, but you might have to take more drugs with more side effects to manage the first drug.

    Wishing you potatoes with a side of donuts.

  24. Jess says:

    I remain dubious about the medication. Especially because didn’t you say something about feeling better when you took an old pill from a blister pack? Hmph. I am so sorry this is happening. I want it to be fixed. Not managed. FIXED. GAH.

    TJ Reply:

    I am also still up in the air about whether or not there was something wrong with that bottle of pills. I’m back on my normal packaging now, but even then… who’s to say for certain that the pills in the packaging are correct? Hopefully it resolves itself with another few weeks on the normal pills, but so far not yet. It’s very stressful to think about, though, that you just don’t know FOR CERTAIN there’s nothing wrong with your pills unless something happens, so I’m trying not to think about it TOO much.

  25. Cherie says:

    This is terrible, you are amazing, I’m so sorry.

  26. Rylee says:

    This is the shittiest. And even if I only have an understanding of maybe 1/30th of that pain, I feel ya. I’m so sorry you have to deal with this.

    I hope you eat way more than two potatoes, and in so many different forms. A buffet of potatoes really.

    TJ Reply:

    A potato buffet is basically my lifelong dream.

  27. Lisa says:

    I’m so sorry you’ve been dealing with this. One of my best friend’s daughter has PTC and it is awful. Massive headaches! Possible blindness! EFF OFF, PTC.

    (Ashton’s is/was relieved in part by a shunt. Have they mentioned that to you?)

    TJ Reply:

    My AZ neuro once mentioned a shunt as a possibility, but not my current one. Or if he did, it was quickly discounted. They do work for people, but they coil and break often and have to be redone over and over and just, ugh. I know they help a lot of people, but it is SO unappealing, you know?

    Lisa Reply:

    I do know. Ashton’s had to have hers adjusted several times, which means SURGERY on her BRAIN and gaaaaah. The whole thing just suuuuucks. Get it together, brains!

  28. Jenny says:

    Kelly, I am so sorry you’re having to deal with this and I hope you feel better soon. You are demonstrating incredible strength and have earned a great many potatoes. Best wishes to all of you.

    TJ Reply:

    You should know I’m only demonstrating strength for the Internet. Not for anyone who has to deal with me in real life in any way at all.

  29. Julie says:

    Wow. I am just awestruck at the ordeal you have gone through and continue to endure. You are made of steel to have come this far. I’m sending as much good energy as I can that you’ll get back to the good place ASAP and stay there.

  30. Natalie says:

    I didn’t read the Latin of PTC the first time and now that I do, it seems even shittier. Pseudotumor? Why couldn’t you be like, pseudo tummy tuck? Something good? You suck, pseudotumor.

    Sorry you’ve been going through all this, it all sounds very difficult. I tend to be an extreme optimist in medical situations because science. Chronic illness does not compute for me.

  31. Alice says:

    Dude. This is categorically and objectively The Worst. I’m so sorry. I can’t believe you aren’t MORE mopey and ragey. This seems monumentally unfair. I hope New Doc works out a new management plan that is successful ASAP.

  32. Carrie says:

    Sending healing thoughts your way. I hope the relpax provides some relief as I know it works for my migraines.

  33. Manda says:

    I read it ALL Kelly. My word. This is HARD. We love you and we are rooting for you.

  34. I am so so very sorry you have been going through this and are continuing to deal with it. How very shitty. Sending all the Quick and Effective and Longterm Solution vibes your way.