Why I’m not posting much.


I haven’t really been wanting to write about this because I haven’t been wanting to deal with emotional reactions that health problems tend to bring up.

Basically, I’m in the middle of a pain crisis. This was brought on by a combination of the neck problems that I went to the ER for last July (so far they’ve found that I have a straight neck and there’s probably something pressing on a nerve somewhere some of the time), the pre-existing trigeminal neuralgia (at least that’s what they’ve started calling it at the pain clinic, it was previously considered part of my migraines), the actual migraines, and (previously) the pain from the tooth extraction, all feeding off each other and amplifying.

I’ve also had several family members with serious health problems recently, and two conference presentations, one of which was a complete surprise to me, and the other of which the schedule for was changed at the last minute (and at a conference where in addition to some really good ideas, there were some really offensive ideas being batted around that were also stressful). And other health problems they have found in me are aspirated reflux probably being the cause of my asthma getting so bad this year, and a fungal infection in my esophagus. I also had to go in for a thyroid biopsy because of something they found on the scan of my neck (and the biopsy itself contributed to the pain mess that’s been going on around here), which is probably nothing serious at all but they wanted to be sure.

I’ve had one emergency room trip (in which they said I shouldn’t be waiting so long to get into the pain clinic, after a combination of pretty strong painkillers didn’t do a whole lot), a lot of days where I could barely get out of bed, and some days where I couldn’t get out of bed, and couldn’t even communicate with people who are paid to support me, let alone anyone else.

I had my first nerve block yesterday at the pain clinic, using a combination of local anesthetic and steroid injected into the lower two branches of the trigeminal nerve. This temporarily took away pain that I’ve had for a minimum of seven years, although it didn’t take away the pain that was from the upper branch (they said the steroids might get into that nerve eventually). When sensation came back, it became really obvious that two of the biggest sources of pain for me are moving my eyes and breathing (specifically the air rushing into the right side of my nose or mouth), neither of which can exactly be stopped. It also became obvious that the entire right side of my face is in pain, but I had only previously noted the parts where the pain is worse to be in pain, because I’d gotten so used to the background of pain that I thought it was what that side of my face was supposed to feel like. It also felt like one wall slamming down between me and my body and another one between me and the rest of the world, because the pain is far more intense to feel after it’s been gone, than to get used to over a period of years. It’s really weird when having a part of your body numbed means you feel more like it’s part of your body than when it’s not numbed. I have to wait a couple weeks and then go back to the pain clinic and tell them whether the steroids have kicked in and offered any pain relief in the meantime. If they haven’t, or haven’t effectively enough, they’ll move on to some sort of Plan B that I haven’t entirely been filled in on yet.

Meanwhile, my brain has been usually (with a few breaks, or what’d be considered by me to be breaks anyway) taken up either entirely by pain or by some combination of pain and pain medication (although the medication is barely touching the worst of the pain). I’ve actually gotten some ideas of things to write about, but so far not had the chance to actually write about them. Even my doctor has been a bit alarmed because he never hears me complain about pain (he usually gets someone else dragging me in and insisting I’m in pain while I try to minimize the situation), but I was actually crying last time I talked to him.

A note to people who’ve written to me asking for things:

If I’m not doing these things, it’s not because I want to blow you off. If you imagine me sitting around having fun, the likelihood is that I’m actually lying in bed doing little to nothing at all (for those of you who might imagine that to be fun, it’s actually really boring after awhile, not to mention painful). There are many projects that I would be very excited to work on, some of which I had already started (especially during the first part of this mess where I was still thinking I could just “push through” the pain if I kept myself distracted enough), that I have been unable to work on. One of those, I was supposed to email about twenty people, all with pretty close to identical emails, and I only managed to email two, each time during a break from pain that only lasted about long enough to email them.

It’s not about me having a problem with you. If you’re one of the few I’ve managed to attempt to make some kind of compromise with, or responded to at all, you’re one of the luckier ones. If I have tried to compromise, please don’t push me further, even what I’m doing is at the moment likely pushing myself at least to my limits if not past. There’ve also been situations where a couple people wrote to me about something we were all supposed to do together, and if only one of you got a response and others didn’t, it’s because I could only write that one response. There’ve also been times where I’ve had to save any energy I had to communicate something vital to people who work for me, and have not been able to respond to people at all. If I’m responding sporadically, it’s because the pattern the combination of pain and pain treatment going on is making is sporadic itself.

At the same time, please don’t throw too much sympathy or horror or other extreme emotions at me, I won’t know what to do with it (it’s one of those emotional responses that seems appropriate to the other person but completely baffles and somewhat alarms me), and it’s the main thing that’s kept me from making a public blog entry to this effect even when able to. But then I figured people should probably know why I’ve got this enormous backlog of stuff I’m not doing, whether it’s sending you something or doing something with you or trying to problem-solve about a horrible system your friend or relative is stuck in or provide you information or work with you on a project or a project I had planned or updating my blog or anything else. Normally I deal with a lot of pain and do a lot of stuff anyway, but this isn’t my normal level of pain, it’s what happens when several kinds of pain create a nasty feedback loop. When the pain is often getting so bad I can’t tell if I’ve blacked out or not when it flares up, I really don’t think I can be sitting around holding conversations, even online ones.

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

46 responses »

  1. Thank you so much for posting! I was really starting to get worried when you hadn’t answered my emails. At least now I know you’re still alive and (at least somewhat) functional!

  2. We wondered, but figured you had your reasons for not posting.

    Thanks for the update, though it was “above the call of duty” so to speak……..I’m sure all of us who care about you appreciate that alot.

    Life goes on here as usual. Our apartment is a disaster!


  3. I hope you get better soon. I suffer from chronic back pain and asthma so I do empathize with how annoying (and sometimes scary) the situation can be. Take care and I hope things are better very soon.

  4. Considering what Musky posted on your blog, I assumed the lack of posts was due to something like that.
    A certain Looney Tunes quote always comes in my head at times like this: ‘Oh, puddy, you’re a wreck!’

  5. Amanda, I sincerely hope you feel better and that the pain becomes manageable. I wanted to thank you for this post b/c it gives me some idea of what my 4 yr old son may be experiencing but cannot verbalize. I’ve wondered if he’s experiencing something involving the trigeminal nerve. Anyway, thanks for giving me a potential glimpse into both your pain and his.

  6. Without being overwhelming about it (a lot of sympathy above): just do what you can, when you can. We’ll survive while you look after yourself. And when you’re able to be active once more, we’ll be happy to see you.

  7. I’d be really cautious about interpreting what I say in terms entirely of being an autistic person. Being autistic may affect my perception of and responses to pain, but it doesn’t cause trigeminal neuralgia as far as I know. I don’t even know what has in my case, except that the descriptions (especially of Type II, which has ongoing severe pain in these nerves but also occasional brief but extremely repetitive attacks of the most severe pain I’ve ever felt zapping across my face) definitely fit and the pain clinic has started using that word.

    When I first went to my migraine specialist, I’d said I had two headaches, one of them was migraines and the other was this constant thing that sometimes turned into migraines. He believed at the time that the constant thing was a migraine itself (which is why I’ve said I had a constant migraine), but I have always felt it to be different in several respects from migraines I normally experience, and I might be right.

    I do know when I had attacks when I was younger, I was 12 when I remember the first one, and it was excruciating, and caused me to yell and cry, it felt like my face had turned to brittle burnt paper that if you even touched it would erupt into the worst pain imaginable. I could talk at the time but not describe it in that amount of detail. I had a few more over the years, then sometime in my teens or early twenties one kind of pain became constant, but the zapping nastiest-pain-ever effect wasn’t as frequent. I also had migraines, but those felt different in some way than this. I wish I’d stuck to my guns about them being different, because I might have gotten treatment faster (the migraine treatments I have tried have not affected this at all, and I’ve tried every on-label treatment and lots of the off-label ones).

  8. During a break on the democratic presidential debate on CNN tonight they advertised a segment on this next Monday’s Anderson Cooper entitled “Finding Amanda”….I know you are in extreme pain….but I did not know your were lost..;)..Any idea what they are portraying here…The clips looked like the ones from their Feb. broadcast….

  9. Amanda,

    Even with having Asperger’s Syndrome myself, it is difficult for me to imagine what difficulties or hardships you are experiencing right now, and I have been in some tough spots in my life. I cannot help but empathize with what you have been through and are going through now, particularly when you aren’t able to communicate a specific need of yours to your caregivers. I have to believe it can become frustrating beyond words at times.

    I want to give some strength in your current trials by knowing that their are people out there who genuinely care, even though it may not seem like it at times.

    And I would bet that this year has tested you in other ways, with all the media exposure of your life, etc. With that in mind I just noticed on TV you were going to be featured on CNN again this Monday. I hope your handling your semi-celebrity status, and that its not attracting too much unwanted attention from others.

    Anyway, I find what you have written here and posted on youtube about yourself, and the way you perceive and interact with the world very fascinating to say the least.

    All the best for you.


  10. The (more recent) CNN interview was one thing I’d tried to meet people halfway on.

    I couldn’t handle a camera person, but I did briefly film myself chatting with someone online who was being filmed on the other end as well, and then shipped that video file to CNN. They wanted me to do it again the next day (or the day after, can’t remember), but I couldn’t, and couldn’t even reply to them until most of the day was gone.

    They’d told me that without any new footage, they were going to replay a whole lot more of me than I’d bargained on basically.

    I’d agreed they could do something an hour long, but only if they included lots of other people in the process and did not make me the main focus, another compromise. They interviewed lots of other people, setting a projected date of this spring for airing what they found, and then they got a deadline to have something done by Monday, and they couldn’t edit all their new footage so quickly so they were going to replay old footage of me.

    So I agreed to do one of the chat sessions, but the next time they asked me to do it I was in too much pain to talk to anyone basically. (I was bordering on that to begin with.) I don’t know if they’ll be using any of that or not. Using that was supposed to take away from the time they’d be showing only me.

    My worry is that a lot of people are going to converge on this blog believing either (a) that my life is everything CNN says it is, or (b) that I told CNN my life is everything CNN says it is. Neither of those is the case. There was a lot that happened, and that I told them, that did not make it into the final edits, and the stuff that was left out gave a very different impression than I intended when I talked to them (for instance, people imagine CNN didn’t know I was considered gifted, have done drugs, been misdiagnosed, etc., and I’ve been quite open about that to them and in public in general). There was also a lot that got misunderstood.

    And some things I still don’t understand, like how they talked about me “being (trapped) in a world of my own” when I have said many times I don’t experience myself that way.

    As such, I’ve prepared a page for this blog called Please don’t take me as typical, to handle all the usual things that happen to me after the media shows me. In the past, the entry Editing covered a lot of what was different between the CNN show and my life. Assorted things I’ve meant to say… covered some other reactions right after the first broadcast. Again and again and again covered the way I responded to one of the questions they asked in email beforehand. And The Awful Prison of Autism dealt with stereotyping in general and sometimes how I felt during the filming in particular.

    If anyone gets here through the Channel 4 segment… is another response to a media portrayal. And I did this interview with Donna Williams to get in a lot of the ideas I’d talked about with the media but that don’t always make it into the final edit.

    I am not expecting anyone to do it, and I am really grateful for the last time someone did it, but if I suddenly get a deluge of comments like I did last time, I would not at all mind the sort of help n. and andreashettle gave before of pointing people to posts that answered their questions, or dealt with their possible illusions, again this time when the broadcast happens and I get the inevitable huge slew of posts by total strangers. I’m not sure whether I’ll be up to it or not.

    (I thought the pain was doing a little better, then today I woke up and it was really bad, so I don’t know how much or little I’ll be able to do by the time the broadcast rolls around.)

  11. Amanda,
    With all you are going thru right now – I just wanted to “pop in” & tell you I’m thinking of you by saying, “LOVE, HUGS & KISSES”
    “Aunt Jodi”

  12. Aw, man, trigeminal neuralgia stinks. I’ve only had it once, almost 30 years ago, and I still remember what I was doing (looking at the clock) when it happened. You aren’t kidding, that pain is wretched.

  13. I tried to be unsaccharine while still wishing well. I realize I may have failed utterly.

    Just because I haven’t really introduced myself yet: I got here after watching In My Language, from a link in a discussion about Katie Thorpe. When I got here, I found post after post in which you described experiences that resonated strongly with me – things people have said to you because of your autism, that were very similar to things people have said to me because I was trans. In several instances, your posts made it easier for me to articulate what bothered me about these experiences.

    So anyway, I’m not here so much to learn about autism (although I have), or expecting you to be Universal Autistic Woman, or anything else. I just relate to a lot of what you write about.

    So that’s my introduction, hopefully saccharine free. :)

  14. Jodi: It’s good to see you on here. :-)

    (For others: “aunt” in this case has a translation of “childhood neighbor and mom’s best friend”. :-) )

    TheQueen: I still remember the first time I experienced it, too, and that was 15 years ago by now. And even thinking about the nastier sort of pain (it’s now the kind that has a constant background pain that, while severe, isn’t the evil-nasty kind that pops up sometimes when it runs out of control — I can function through this, I can’t function when it starts zapping me) is enough to make every hair on my body stand up.

  15. I remember reading an article in a Reader’s Digest years ago about trigeminal neuralgia, and it was pretty much described as the “worst [physical] pain anyone could experience”. I can’t remember what they finally did about it in the article (it was written by a woman who had it), but either way, I hope a workable solution presents itself. I don’t know a whole lot about nerves or facial anatomy, but it seems conceivable that there might be some way to permanently “turn off” a nerve from firing, or remove a nerve entirely (like in a root canal).

  16. I found this article that dicusses trigeminal neuralgia including treatments…This article too states it is the severest kind of pain. I learned quite a bit by reading it. The article is broken into parts so if you just want to know one area…like dx or tx you can skip to that.
    My hope for you is resolution of this pain…ASAP..


  17. There’s an article in the British media on UK “cure/treat autism” people vs “increase understanding of autism” people. The reporter does seem to have tried to listen to all sides, though some errors do creep in, e.g., it repeats the idea about different “levels” of autism and parts gets offensive–supposedly those with more “severe” autism “can’t tell a person from a post” :-(

    I don’t see a place to leave comments there.


  18. Feared it was something of the kind, on the grounds that not much less would stop you.

    I think the emotional reactions translate to “I care”; also that you can safely do nothing with them.

  19. Pingback: Post in anticipation of tonight's potential deluge. - Ballastexistenz

  20. I have had a multi-year problem with what may or may not be nerve pain. I found it very difficult to connect typical words used to describe the pain to the pain itself, quite frustrating the doctors and so forth. We tried all sorts of pain medications and physical therapy. Most of the medications worked only moderately well, if at all, and made me dopey. Eventually, however, we tried Lyrica. Not only was it far more effective than anything else we had tried, I didn’t have any side effects from it.

    Lyrica is a cousin of the horrid Neurontin, but not the same substance. I was told that the likely reason fewer people have side effects on Lyrica than Neurontin is that it is effective at far lower doses.

    I’d be surprised if you haven’t already talked with your doctors about Neurontin and Lyrica, but thought I’d post anyway just on the off chance.

  21. I’m on Neurontin 2700 mg/day (split into 3 doses), which works very well for other kinds of neuropathic pain I have, as well as the fairly mild complex-partial seizures I get. It doesn’t make me too dopey either, it does that for a few weeks if I change the dose then it goes back to normal. I’m sure it’s doing something for the pain I’ve got right now, but the scary part is what the pain must be like without it.

    I’ve been on most of the other anti-convulsants with no effect on this and lots more side-effects than I get with Neurontin, so I’m sticking with what I know for now since it’s such a hassle to change.

    But I’m now also getting seizures because of the pain meds I’m on.

    They’re going to kill the pain nerves in my face soon, I just have to wait for the specialist to get off of sick leave, because they couldn’t find my nerves (!?!) when I went in yesterday.

  22. Right now, I’m dealing with what I believe to be a case of shingles. When it happens to me, (and it’s happened a few times before), I don’t get the rash. Supposedly this is rare, but it’s common enough to have a name: “zoster sine herpete.” It’s triggered by stress or trauma, and if you’ve had chicken pox before, you can get shingles. Anyone experiencing painful skin on only one side of the body might want to consider this as a possibility.

  23. “they couldn’t find my nerves (!?!) when I went in yesterday.”

    Oh, but didn’t you know? They’re still “Finding Amanda” so naturally that would mean they’ve misplaced your nerves as well …

    Sorry, couldn’t resist :-)

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