Bit of an update.


Since people have been asking.

The steroid nerve block didn’t work. And the pain in my face continues to be often worse than the pain they (temporarily) created when they injected things straight into the nerve.

But what they are going to do is some kind of procedure that slowly kills the pain nerves on that side of my face, but leaves all other nerves intact so I will still have feeling but won’t have the constant pain. I went in yesterday to have that done on my maxillary and mandibular nerves, and was going to have it done on my ophthalmic nerve later when the specialist got back from being out sick. (The ophthalmic nerve is harder to reach and more dangerous to work on.)

However, they couldn’t find my maxillary nerve, as far as I could tell. So they are waiting for the specialist to come back before they do any of them. I will get a phone call and when that phone call happens I will go to the clinic that day, whenever that day is, to get the procedure done. They seem extremely aware this is at the point of being a crisis and want to get me in as fast as they can.

In the meanwhile, I yet again experienced the effects of having two of the three facial areas partially numbed and then back to normal again. Yet again it felt like two walls slamming down, one between me and my body and another between me and the rest of the world. It’s very strange, still, when having something numb makes it feel more like part of you than feeling it does.

Whenever they do this, they said that they’ll put something in the pain nerves, but that it will take up to a week for those nerves to fully die off.

In the meanwhile, I’m functional part of the time. I’m getting over a mild pressure sore caused by sitting in bed all the time in one position because of this pain. A lot of the time I’m really not doing much of anything. If you see me online it’s likely I’ve connected from bed either at home or from a neighbor’s couch I’ve been staying on since I can’t even microwave my own meals at this point most of the time (nor can I always operate a computer, even from bed, or have an attention span longer than a second or so, etc). Meanwhile the only pain meds I’m allowed to take are giving me seizures and when I get really drowsy (which the pain somehow makes me drowsy even without meds) they also give me mild hallucinations while still awake. And one of my most familiar staff people moved out of state, another quit all but one day of the week to take care of her kids since one of them developed an autoimmune disease, and new people are being trained in the middle of this mess. My doing anything will continue to be completely sporadic and unpredictable. I’ve been working on a few posts but they’re still in draft form.

And my main goal at the moment, as my friend put it, is to continue existing until I do get treatment for this, anything else is optional. She’s meanwhile experiencing some kind of either Sjogren’s flareup or odd systemic infection, so she’s not at her best either (she regards it as an accomplishment to sit up for a few hours at this point, and it’s possible she’s going to end up in the hospital or on lots of IV treatments or something). And yet she says she’s more functional than I am at the moment. Yet another interesting scenario of a couple of gimps attempting to take care of each other (hopefully she won’t be attempting any more wheelchair transfers of me, though, because last time she did that she dumped me on my face ;-) ).

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.

25 responses »

  1. I can’t believe this, but my dog ended up having two seizures today too. I wasn’t around for them, because I wasn’t walking her. But the guy who did said she fell on her side and had a really fixed gaze and he eventually tried to pick her up and she growled and snapped at him. Then she seemed to get over it, took a few steps, and fell down again in the same way. He waited it out and took her inside.

    (If you’ve ever met this dog, growling and snapping are not normally in her vocabulary. Most of what she knows how to do in terms of interaction involves tail-wagging, face-licking, and standing on her hind legs to avoid being seen as jumping up on someone, as well as full-body-wagging and blissful expressions when people scritch her neck. Given that for me coming out of a seizure feels like someone takes my brain, chops it into blocks, moves the blocks around, removes some of the blocks altogether, changes the color of all the blocks, and then dumps it all back into my head in as painful a way as possible… I imagine she must have been very confused and scared to act like that.)

    So now there’s been a vet visit on top of everything else (and the vet has no clue what’s going on either, but ran some bloodwork). I think I’m going to resign myself to the idea that Murphy hates me, and get on with things.

    The good part of the vet visit was that she met a turtle who lives there in a terrarium. The turtle (“Petunia”) is extremely curious about both humans and dogs, and Billie Jean stood there on her hind legs sniffing the glass and wagging her tail.

  2. Wow…………everything hitting at once………

    can’t find my words. They left me….

    We want to tell you………..that no matter what, you WILL GET THROUGH THIS. Not much comfort at all…but, you will. Perhaps the last thing most want to hear but the first they should remember……..

    take care.


  3. I know it is tiresome when people suggest all kinds of treatments, but my son is severely autistic and suffered from seizures several times per day. No medicine ever worked (and we tried them all). I finally got him seizure-free by way of classical homeopathy. In fact, homeopathic meds are the only ones that have a good effect on him (regular meds either have no effect or they give him a paradox reaction). Just wondering if you ever tried homeopathy. The thing about it is that you have to find a homeopath who works with classical homeopathy only (no mixed treatments), and he or she needs to be experienced in treating severe chronic diseases. We live in Berlin, Germany, so I can’t really name anyone near you. Just wondering if you tried this. Hope you get better soon!

  4. So sorry to hear this ;-(

    I remember you once mentioned (at this blog somewhere) that your dog is basically one living, moving “I AM NICE” social signal because she normally so friendly.

  5. Crying shame that didn’t work for you. First thing that helped me very much at all when I was having my back problems was the steroid injections. They DID take a little while to really kick in though … like WEEKS.

    Pretty much what they do, as I understand it, is help to get some of the swelling down so the natural healing process can kick in. That process still takes quite a while though.

  6. Ugh. Right now I’m dealing with another “interesting” situation, too.

    General situation includes:

    My friend is at the doctor today, and may or may not be capable of doing anything when I get home.

    I have a staff person coming in at 2:30 (eastern time). As of starting to write this it’s 1:35.

    It’s unknown whether I will be capable of communicating with him. So far, I have only been marginally capable of communication with someone else in the room, and often not capable of it even with someone out of the room. (Right now I’m doing so but the level of physical pain involved is pretty extreme and I don’t know how long I’ll be able to keep it up.)

    This means that so far the only things anyone has done for me all day was one person gave me my medications, and ground medications for the rest of the day, and another person helped me with hygiene stuff (while I stayed in bed). I have not had either breakfast or lunch, nor have I had the means to ask for them.

    The less I eat, the less I’m able to do, because even skipping one or two meals is among other things a migraine trigger and greatly affects my ability to function in general. This means that the less food I get, the more likely I am to have trouble getting food.

    My friend is at a doctor’s appointment right now. When she comes back, there’s a good chance that she’ll either be completely exhausted and possibly ill from medical side-effects (more likely) or hospitalized (less likely but possible).

    I am not capable of making phone calls. I tried making one phone call earlier over the Internet relay service. That was in the other room. This computer does not have the capacity to use that service. I can’t get into the other room right now. When someone calls, I can hit the speakerphone button next to my bed but I can’t answer them so I end up hanging up.

    I am not capable of operating a microwave and, with one exception, haven’t been for days. That exception no longer applies because that was a highly familiar food that no longer exists in my kitchen, and even then I’d been having trouble getting that particular food microwaved and the time I did was an exception. Even if I were doing better than I am right now, the unfamiliarity would be enough to push that ability off the cliff into a pit.

    (All of this being an example of why one “little” thing that seems “minor” can completely throw off someone who doesn’t have any energy to spare on processing one “tiny” extra thing.)

    I am having more trouble than usual with familiar doorways (usually the familiarity and the layout of this place overrides the “doorways are difficult” rule; the fact that they’re still difficult is making me wonder whether I’ll be able to communicate with my afternoon staff person, whose familiarity normally overrides the “communication with unfamiliar humans is difficult” rule).

    I am trying to think of inventive backup plans that don’t involve doing things I can’t do right now.

    I’ve considered dialing my case manager’s number repeatedly until he grasps that something’s up. The down side is it might just cause him to turn his cell phone off out of annoyance and not catch that there’s a reason for this, and that even if he realized something was going on, I doubt he’d know to check my blog.

    There’s always a chance my afternoon staff person will figure out what’s going on. The thing I have to prepare for is the possibility that he won’t, and that his walking into my apartment will cut off any further communication ability from me.

    If I sit up, I will not be able to say much, because sitting up includes supporting a neck that’s sending pain signals throughout my body, and standing involves both that and supporting ankles that shoot pain up my legs when I walk on them (I have ankle braces and medical permission to use them indefinitely, I just can’t find them. Lying down, meanwhile, appears to make breathing more difficult because of aspirated reflux.

    There’s a pain medication I would normally take that would get rid of a lot of this temporarily, enough for me to solve some of the problems. I can’t take it because virtually all pain medications including that one are disallowed indefinitely until I can get the nerve block, because of bleeding risks. The ones I can take, aren’t optimal for one of the kinds of pain I’m experiencing.

    I’m also not thinking the clearest because of the whole pain/foodlessness thing. Additionally, though, I have a lot of information about the assorted situations above, in my head. If someone (offline) were to attempt to talk to me about this, and suggested something I already knew had problems with it because of the above or related things, I would likely be unable to tell them, so I would likely have a choice to sit silently or scream but not a lot in between. (And if someone told me something as ridiculous as “just type it”, which people do the moment they can’t understand some alternate thing I’m doing to communicate because I can’t type right then, I don’t want to know how I’d react.)

    Also complicating things is the fact that missing meals makes me involuntarily cry with very little provocation (including doing so in my sleep) and that could easily both annoy someone and confuse them in a face-to-face communication situation if they didn’t know it was a more-or-less biological reaction.

    I’m current on the pain meds I’m allowed to take.

    I’m hungry.

    I’m thirsty (despite running away in terror when someone started waving a glass of water around, which more had to do with the fact that they kept moving it back and forth so I couldn’t see it, than anything inherently terrifying in glasses of water — I wish people would not jiggle things back and forth at me when trying to also make me process language, it just confuses me, and for the life of me I don’t understand why people seem to feel the near-universal need to make objects in their hands do a funny little dance when talking about them, so that it becomes both impossible to take my gaze away from the object and impossible to discern what the object is while it’s being danced around like that, while meanwhile there’s mounting pressure to respond).

    (If anyone’s wondering how on earth I’m typing this, it appears to have something to do with the fact that there’s a computer in my bed and I’m completely alone — sometimes I can’t do things until someone gets here to spur me into action, sometimes I can only do things until someone gets here to make action impossible.)

    As of right now, the time until someone gets here is about 10 minutes. He is both the most practical person who works for me and the one who knows me the best. I’m hoping this will allow him to put two and two together, or that I’ll be able to manage some sort of spurt of energy to tell him what’s going on before I go back to being a shaking inert blob.

    I have outgoing email. I don’t have incoming because that’s all being downloaded in the other room.

    I have four two-week periods of intensive crisis staffing per year. There is a possibility that I’ll need to initiate one of these soon, but there’s a lot of other things I want to check on first, and I also think the main person involved in the practical end of that crisis staffing just moved to another state (part of the point of it is so that I don’t have people who are unfamiliar with me and/or incompetent randomly coming in here through the regular crisis program; last time I used that program I ended up exhausting myself drawing diagrams of where to find things in my apartment for someone who had serious difficulty understanding simple phrases such as “next to the toilet” or doing relatively simple reasoning tasks, and I’m not saying that as snark, it’s actual fact in general with the most common person who gets sent here from the on-call crisis services, and he also generally just comes in my apartment and stands there staring at me, including if I’m obviously in a situation like stuck after falling on the floor, vomiting from a nasty migraine, or other things that you’d think people would know what to do about… and all that is assuming I’m capable of making the phone call to the crisis team).

    I’ve already used up one of those periods, as well, and while the year starts and ends in July for these purposes, I’d rather not make a decision too hastily and then lose those hours some other time.

    Posting this comment in the off chance that I’ll be able to at least direct either my afternoon staff person or my case manager to my blog. I just hope this doesn’t alarm my parents too much.

  7. If you can get some food items to set on the nightstand that don’t spoil might be one idea.

    I like flour tortillas for instance. They can sit out and just try to do the ziploc to keep them fresh, though sometimes I forget to do the ziploc, but usually their gone before they rot. (oops)

    I’m not sure what other non cook/no spoil foods you might like, but give it some thought.

    Hope things start going better for you soon!

  8. It’s probably hours too late for this now (your staff person has probably come and gone already), but you might try printing something (if possible — unlikely) or having something displayed on your laptop screen and facing where your staff would see it when he/she comes in. This would be whatever information that you think you need to convey.

    I’d offer to come over and cook you something, if I weren’t a 3-4 hour drive away.

  9. More bit of update:

    I have seen the log written by one of the new morning staff people. Shown it to a few people (staff and otherwise). All of us are unanimous that he ought not to come back. He used the log book to vent about actions of mine that he took overly personally, and he included a degree of detail that is not supposed to happen in my log book. It’s supposed to be a log of tasks staff have accomplished so that everyone is on the same page, it’s not supposed to be a log of every move I make during the shift and what the staff person thinks about it (all of which have confirmed some of my suspicions about what really goes on in the heads of the kinds of staff that talk to us like we’re children and never say what they’re really thinking).

    But basically, I have my own place so as not to be forced to deal with people like him, people like him are not welcome in my apartment.

    I am staying at my friend’s place tonight, I am on her couch right now. She’s not capable of cooking either but she’s been really nice to me and she kept me semi-oriented in the middle of a series of seizures.

    I showed the screen to my staff person. I can’t print things out because (a) my printer doesn’t work right now and (b) that would’ve involved going to another room and messing around while upright even if the printer worked. The computer I’m writing this on doesn’t have a printer.

    He agrees there’s a major problem — he’s seen it for awhile — and he’s also known me long enough to understand precisely why I did the things I did this morning (like try to get away from the water being waved in my face, and try to tell the guy not to leave substances that are toxic to cats lying around face-up in the sink the cat drinks out of). He is also not sure, because of awful communication going on between everyone, whether anyone but him (since he sees me almost every day of the week) realizes the full extent of what is happening at the moment. So we’re going to try to talk to my case manager about all this and he told me since I forget things that he’d also tell him separately if I forget.

  10. This is a nasty situation to be in. Is there anything any of us could do to help? I’m no where near you, unfortunately.

    Hope you and your case manager are able to enforce a prohibition against that guy coming back. And that your case manager will work something out for your present crisis.

  11. I have e-mailed your case manager so he can read
    your last posts. Communication is very important here and I know you are having difficulty accessing
    your normal modes. Hope to talk with you or your friend soon…Hang in there…

  12. Very wise of you to think long and hard about whether or not to use the extra crisis hours………..

    But, if you have to……….is there a way that you could petition for additional hours down the road if you needed them again (more times than what you are allotted per year?) maybe something to ask your case manager? (I have no clue how these things work. I don’t mean to pry……..just a suggestion. No idea if its feasible or not)


  13. Amanda, if there’s anything I can do please let me know. If there were better questions I could ask to cue that knowledge I would.

    And if they send that person back, give them hell, they know better.

  14. Fresh water to drink by your bedside is very important as is readily accessible food. Bananas/cereal in boxes/Cans of Ensure with straws available/power bars are possibilities for emergent use between meals. There might need to be a check-list for new staff to check on when they come inside such as checking on water and bedside foods. It would be good to be able to track the amount of water you are getting to make sure you are staying hydrated. If possible have someone get your phone equipment near your bed. You need to have access to communication.

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  16. Amanda, your headaches/trigeminal nerve problem sounds like what I had for years. It turned out to be misdiagnosed as migraines– it was cluster headaches, which are rarer and more painful (and which directly affect the trigeminal nerve). It’s a very common misdiagnosis because like migraines, cluster headaches tend to be on one side of the head. Have your doctors ever tried you on a course of Verapamil (an older blood pressure medicine)? It completely changed my life, headache-wise. (A quick and harmless test to determine what type you have, if you end up in the ER, is to have them put an oxygen mask on you for about 10-15 minutes at about 6l/minute. Many people with cluster headaches, myself included, find that this is a better painkiller than morphine. It will completely abort a headache.)

    (I found your blog through the Seidels’ webpages. I went to the same college you did. I think we overlapped by a year)

  17. mad housewife:

    You are very correct. So many people (myself included) complain about various things………heck I’m doing it now……..schoolwork, projects, finals, etcetera……..

    and those things become larger than life itself………..sometimes.


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