snippet

There are many things I’ve made a note to discuss with you, sweet, faceless readers, and I can imagine writing an engaging, colorful post about them. Alas, imagining it is all you will be able to do, because I cannot summon the mental or physical energy today to write fully or well. Part of coping with FM, as I’ve mentioned before, is learning to do less, and to do things differently than you’d like to or think you can. I tend to be a very all-or-nothing sort of person, hence the fact that I haven’t posted here in a week. However, in the interest of being more involved in the world and smudging the precise features of perfectionism, I am writing this post, which will be brief and may not live up to its imagined version.

Despite that gloomy intro, I’d like to share the fact that I went out yesterday and walked around in the sun and purchased some comfortable, yet non-sweat-pant clothes (I will discuss FM and clothes in a future post! Get excited!). This included a pair of comfortable shoes with good arch support (I have flat feet) which are also quite lovely, and a pair of linen pants which are So. Comfortable. and yet can be worn in public.

I inadvertently skipped my nightly dose of Rozerem on Saturday, and this, combined with half a cup of coffee with friends at about 5pm, being excited about spending time with said friends, and eating dinner late, led to the inability to fall asleep until 7am (YES! 7 in the Morning!).

I did, however, catch up on some emailing, so that was good. Saturday’s complete lack of sleep + adjusting to daylight savings + whatever else causes FM and dysautonomia to thrive = about a week of feeling pretty energy-less and awful.

However! In the midst of feeling unfortunate there has been some definite excitement — it is suddenly, incredibly summery here, which has a giant affect on my mood (I become a giddy, small child). Southern CA’s climate is wonderfully absurd — my memory of last summer has barely begun to fade, and already it is summertime again. I am in favor of summer.

In gardening news, I have had to sacrifice several pansies for the sake of the rest of the plants (although it was gratifying to cast the aphids out of the house).

explodingdog.com

I have discovered an artist I enjoy: Ya Ya Chou, and I’ve put up 2 of Chou’s pieces on the Art page, with commentary hopefully to come once I feel a bit better.

Here are some things I’ve been excited about recently:

interracial couples

Sex, Lies, and Videotape (I love James Spader!)

the beautiful Whitney from The Hills (yes I have horrendous taste in television)

New Art Page!

With the daily pain, exhaustion, and myriad other distressing, often inexplicable symptoms I experience with FM, dysautonomia, etc, it is easy at times to become disheartened and bitter (not sweet or salty, but occasionally sour).

Sometimes I forget what it’s like to feel excited about something, to feel hopeful, to lose myself while focusing on something enjoyable, especially as many of the activities I used to find delight in are now difficult or impossible. I’ve been making an effort to pinpoint the little, accessible things that make me excited and hopeful, and I’ve been doing these things when I feel awful and hopeless, cultivating my interest in them and increasing my ability to appreciate the world. When this works for even a few moments it can be a huge relief.

With this in mind, I’ve decided to start a new page on this blog, in which I show you bits of art I’ve come across that have moved me, and I try to explain what it is I enjoy about them. I’m hoping this will remind me that the world is lovely and delightful, and that I can be a part of it. Please feel free to share your reactions to this new page! It is a bit of an experiment.

Spoon Story

I came across this story, and while it is a bit lengthy I wanted to send you to it because it presents a great metaphor for what it’s like to have a chronic, invisible illness. For those of us who experience this, it’s validating and comforting to read about an experience similar to ours, and for others it offers a glimpse into what we go through. Plus, there are spoons.

Spoons, Michoacan, Mexico, 1994 Spike Mafford

Also! Don’t let this snippet of a post distract you from the more substantial post below!

Penpal visit, Pacing

So, I’ve met my penpal Sam since I last posted! More on the actual meeting in a bit, but first let me backtrack.

I spent a few days occilating between anxiety and excitement before he arrived, and while I thought I was pacing myself with my pre-guest preparations, apparently I was not being as careful as I should have been. One morning I was up fairly early and had some energy, so I re-potted several plants, and began dusting the house.

I was feeling fairly good, was glad to feel useful, when suddenly I became incredibly exhausted, faint, and cold. My skin was icy, I was shivering and sweating at once, I was quite nauseous and felt like I was going to lose consciousness. It felt somewhat similar to the beginning of a panic attack, but without the racing heartbeat and the fear. I ended up lying in bed, getting under the covers fully clothed, and tried to regulate my breathing. I fell asleep after awhile, and finally felt warm. When I woke up the only symptom left was intense exhaustion.

Here is Archimedes’ Method of Exhaustion:

In retrospect, it would have been wise to take a break after repotting the plants (and it probably would have been better to re-pot only one or two), to eat and drink some water, breathe, etc. One of the most difficult things about managing/having FM and dysautonomia is realizing that you cannot accomplish basic tasks back to back, or multitask the way you may have before. Daily tasks are still possible, but in a very different way than most people get them done. I have to constantly be aware of how much energy I have in order to pace my activities, incorporate breaks, and be ready to alter my plans at any time if my symptoms worsen.

I think one important component of managing FM symptoms successfully is to be aware of your limits, to observe what kinds of behaviors and activities exacerbate symptoms, and to preempt these behaviors before they can even begin to lead to flare-ups. That sounds so much simpler than it actually is, of course, partly because it is often very difficult to be always aware of one’s body and to pinpoint what triggered an increase in symptoms (for me, dissociating physically has been a coping mechanism in the face of pain, etc).

The hardest part for me is learning to limit my activities when I’m feeling good. On the occasions when I have some energy and feel able to do things, it is difficult to remember the threat of future flare-ups and to subsequently do less than I feel like I can. I may feel relatively fine while I am re-potting and dusting the house, but anywhere from an hour to a day or week later I will feel the intense effects of not pacing myself.

Meanwhile, Sam’s exciting arrival was imminent. I found myself thinking about the minute details of meeting him — for instance, the difference between finding someone whose arrival you’ve anticipated at your doorstep versus walking towards them in an open, public space like an airport. Don’t you always find it is more nerve-wracking/butterfly-inducing to walk towards someone across a distance while you stare at each other, than to be suddenly presented with them standing before you?! I do. I stood in the airport, checking the arrivals list about 5 million times, trying to determine where exactly Sam would appear, and where I should be standing in relation to that spot.

And there he was, walking toward me, and the distance was not so vast or prickly, and he was not a hallucination or made of paper covered with the words we’d written to each other.

(This is the book I am currently reading, thanks to Ian :) — it is So Strange!)

[Edit]: So, I’d like to describe each moment of my visit with Sam in vivid detail, but there are a few reasons why you will unfortunately be deprived of that. Most importantly, I want to respect Sam’s existence as an entity apart from the narrative of this blog and my own perspective. Just as I could not show you his pretty face, I cannot show you the intricacies of our brief visit. Also, although in each of my posts here I intermingle FM/health issues and my personal life, I’d still like FM/health issues to be the main lens through which my posts are created.

I will, however, tease you by saying that the following were involved: Indian food in lovely little silver bowls, the thrills and perils of LA traffic, stunningly beautiful cartoons, ornery DVD players, mangoes, cities, jackets, and water (sans tea kettle, sadly).

Sam and I had a lovely time together, despite only previously knowing each other through screens and keyboards. Sadly, he has to return to his home, but I find it highly enjoyable that my penpal exists and that we met!

In other news, my pansies have been infested with aphids!! They are everywhere, and seem to die only temporarily (how is it that aphids are immortal?!), crawling around even after the neem oil bug spray I’ve saturated them with has turned them brown (?).

(do you see their “dual exhaust pipes?!” they are the only insects that have these!)

I’m hoping that perhaps their death is simply drawn out over the course of several days, but so far my valiant pansies are struggling under hundreds of tiny translucent green and brown feet. I’ve attempted to quarantine the infected flowers in the hope that the creatures won’t spread to my lovely fragile herb sprouts, but they seem to know secret tunnels that I’m not aware of.

Okay, I just did some casual research on aphids, and I am officially impressed and creeped out (what’s that crawling on the back of my neck?!! Aah, just a stray hair…). Apparently they are born pregnant (!!), and reach adulthood in a week. Fuck. I need to get some ladybugs!

Also, Rob and I went to see a movie yesterday. He and I never go to the movies, so I was a bit excited. However, somehow we managed to see the Worst Movie Ever Made.

The Number 23

(don’t let the shiny saxophone seduce you! resist!)

It’s so incredibly horrendous and mind-numbingly awful that I don’t have the energy to describe each of the reasons why it makes me want to swallow rusty nails. Here is a review of it that says some of what I would say if I wasn’t busy trying to forget that I ever saw it. It was, however, fun to bond with Rob over the horrible movie. I must say, before I move on, what happened to Jim Carrey?! I thought after Eternal Sunshine of the Spotless Mind and The Truman Show that he was capable of excellent acting and chosing roles with depth and originality. Clearly he has been inhabited by aliens. Really, really mean aliens.

I wanted to talk more about pacing and update you on my medication experiences, but it will have to wait for another post. Meanwhile, I hope everyone is having a splendid wednesday, and if you go see the aformentioned movie and you enjoy it, perhaps we should talk about anything else.

reaching out, a pen-pal, and cleaning

I don’t have many friends, partly because I am a tad shy, but mostly because I don’t have a job, I’m not currently in school, and I don’t always have the ability to leave my house. It’s slightly embarrassing to admit that, but it’s my reality. It can be surprising how much of your interactions with people occur at work or school. When the absence of those activities is paired with health issues, you can become quite isolated, at least in my experience.

I’ve made an effort to reach out more to the friends I do have, and to take advantage of methods of communication that don’t require my physical well-being, like the phone and the internet. I’d like to extend this effort even more, by volunteering at the nearby library or gay & lesbian center, by taking a tai chi class — something that wouldn’t demand much of my time but would get me out into the world more. So far these activities are just hopeful ideas — I have yet to motivate myself to actually get involved, but I have hope that it will happen. (It’s fun to think about, at least, and sometimes the hopeful idea of doing something is the most I can manage).

My efforts to reach out to people online have led to a delightful connection — my pen-pal Sam. Yes, I have a pen-pal!

It may seem childish or old-fashioned, but it has been quite enjoyable, and has been perhaps the main reason that I have not completely lost my intellectual and verbal abilities since I’ve been unable to take classes. Sam and I have also had a few sideways, distant get-togethers, where we watch the same movie at the same time. Despite the distance between us, this has the enchanting result of making us feel as though we are almost in the same room, which is amusing.

Just a few days ago I found out that Sam will be in my area for a few days, giving us the opportunity to “meet” in person! I am quite excited, and will soon find out if he is indeed real or simply a figment of my overly active imagination. I would like to show you pictures of Sam’s lovely face, but I’m not sure how he’d feel about that, so you will have to be content with pictures of other Sams.

Here is someone’s dog named Sam:

Here is a software utility kit named Sam:

(which is quite fitting, because the real Sam studies Greek)

Here is someone’s cute child named Sam:

One nice side effect of Sam’s impending visit is that it motivates me to clean, run errands, and do various other preparatory things. Cleaning is generally one of the things that falls through the cracks of my pain and exhaustion, so it is at this point a rather large undertaking. I made a to-do list of all the things I’d like to get done before Sam arrives. It was upsetting because for a healthy person, or for me several years ago, the list would easily have been accomplished in little more than a day. However, with the constraints of FM and dysautonomia, and knowing that I didn’t want to overdo it so that there was still some of me left when Sam came, the list was barely possible in a week.

However, Rob was very supportive, and offered to help me with the more overwhelming tasks. I decided that several of the overly neurotic/perfectionist-y things on the list could be eliminated, and now I am feeling quite relaxed about it all.

In some ways it feels nice to have something to work toward, to again be able to cross things off a list (ah, it has been so long since I lived by lists, and while I feel healthier without their insistent voices, sometimes I miss the sense of competence they give me).

This makes me realize that I’d really like to work on having some kind of structure to my days, so that I have goals (as well as flexibility) each day. Although this is hard with FM and dysautonomia I think it would vastly improve my general outlook. Maybe I will start in small steps. This is something that the occupational therapist at the fibromyalgia program at Cedars-Sinai hospital (see link in my blogroll to the right) talked to us about quite a bit, although I’ve found that it’s much more difficult in reality than in theory.

I hope everyone is having a fabulous Thursday! I am in a rather upbeat mood because of my renewed sense of purpose, and because I slept well last night (after one of the worst nights of my life, in which I got no more than a few hours of sleep, aahh!). The herbs I’ve planted in my indoor garden are doing quite well, and the 2 dogs seem to love each other, so despite the continued back pain the day seems hopeful.

Back pain, showers, and the unexpected benefits of fibromyalgia

So, I wasn’t going to post because my days have been colored almost entirely with intense back pain, and who wants to hear me whine about that, right?! But then I remembered the entire point of this blog is to document my experience with FM, etc, so here I am.

I’ve felt quite trapped the last few days, as basic movement is limited by the spasms/pain in my back. Occasionally I can find a position that is mildly comfortable, and if I remain perfectly still in that position my pain is alleviated (at least until my muscles begin cramping from being immobile). I am attempting to do some gentle stretching, because I know that not moving for extended periods makes it worse. Mima, my Israeli physical therapist, would be proud of the stretches I am doing. Actually, I take that back, she would want me to exercise, the idea of which only makes me giggle at this point.

Did you know that one of the symptoms of dysautonomia is “exercise intolerance?!” I love this term, its lack of specificity, how it generally sounds made up. However, it does make sense in that everyone has always told me that exercise is fun, releases endorphins, etc, and I have Never had that experience. I never really understood these claims, because I’ve always felt awful during and after even mild exercise. Walking is perhaps a slight exception to this, and I find the strength training machines at Curves tolerable in small doses.

The gentle stretching so far does not seem to be making a difference, other than to increase my pain, but I am trying to listen to my body and move it in ways that feel beneficial. One of the major psychological hurdles with FM and the other health issues I have is the feeling of being trapped –

that I cannot even think about what I would like to be doing, with my life, with my days, because nearly everything that comes to mind is currently not physically within reach. Notice the presence of the word “currently!” I do have hope that my physical limitations will decrease. Sometimes I lose sight of it, but I always come back to it.

For me, there are definitely some unexpected, tangential benefits of having FM. For instance, for most of my life I have done a million things at once, and done them all well (from school to everyday tasks). I used to put enormous pressure on myself to keep up this pace, this standard, often losing sight of what genuinely made me happy, with little concept of relaxation. Having pretty major physical limitations, especially affecting energy levels and the ability to multi-task, forces me to relax and take things slowly, which can be wonderful. Also, in the absence of the activities I was previously occupied with, (full-time school, a job, a group of friends) I’m able to pursue my sort-of secondary interests (jewelry, indoor gardening, reading, cooking).
Beads!

a watering can!

a purse that looks like a watering can!

I found so many pictures of exciting watering cans — clearly I need a cooler one.

This change has (and still does at times) de-stabilize my sense of self, but in my best moments it feels more like I’ve just realized that who I am is much more expansive and flexible than I thought, which is a positive thing, and opens me up to different people and experiences.

Here are a couple of positive things that have occurred in the midst of the breathtaking back pain:

1) I have had almost no appetite the last few days, nothing has looked good, and eating has been a struggle. However, yesterday I realized that bran muffins sounded good, and I made some! They are incredibly moist and filled with healthy things, a very small amount of sugar (in the form of molasses) and almost no fat. I ate a million of them this morning, and feel like eating and I are getting on admirably once again.

Mine look even yummier than this, if I do say so myself:

2) I made grilled cheese sandwiches for the first time ever yesterday (I realize this may seem silly to you), and they were So Scrumptious. Welcome back, food, I’ve missed you!

Here is the virgin Mary’s face on a grilled cheese sandwich (not mine!):

Why must it always be the virgin Mary or some such person? What if that was really someone’s aunt Tillie or your next door neighbor Francine appearing on the grilled cheese?

3) Artie, the new snakey cute dog, continues to jump up on the bed multiple times each night, waking me up each time so I have to gently but firmly push him off (gently because I love him and also because he pees a little when he is frightened, which is extra fun — we think he was abused). Last night we put him in the boy’s room and closed him in, and it was so lovely to sleep without a dog face continuously waking me up! He was fine and didn’t whine at all, plus he got to sleep under the covers finally! Now Rozerem can do its job uninterrupted.

Before I depart I want to talk briefly about my shower issues (I know a little thrill of excitement shot through your heart at the mention of this fascinating subject).

For most of my life I have showered every day like many people. However, in the last year and a half or so showering has become quite difficult. This is partly because nearly every panic attack I’ve had has occurred in the shower, which of course makes me subsequently less excited about showering. The main problem, however, is my FM symptoms. It can be quite exhausting and painful to stand up, moving my arms and my body for the course of the shower. I’ve found that afterward I have to collapse for awhile — I get short of breath, dizzy, light-headed, sweaty (lovely, I know), and alternately hot and cold. I now know that much of this is related to dysautonomia.

I’ve started trying to simplify my showers as much as possible (I used to use a million different products and take a long time). I now only use Dr. Bronner’s lavender soap, which is amusing and enjoyable not only because of the bizarre writings all over the label (some inspiring, some freakishly religious, some nonsensical), but because it is free of sulfates and yucky chemicals. I even use it as shampoo, which is surprisingly effective!

I also have started putting one of these strange menthol-y smelling things on the floor of the shower, which I’ve noticed helps regulate my breathing and relax me while undergoing the stressful shower experience:

These also help me keep my showers pretty short, because I know that when the tablet has melted almost completely away I should be getting out.

I don’t think that they actually do what they are advertised for, which is decongesting the stuffy nose, but for me at least they have a secret, fantastic use for FM. It makes me realize that if more people/companies were aware of FM issues and worked to create products to make our lives easier they could come up with all sorts of fabulous things. Meanwhile, I will continue to search for hidden FM uses in otherwise typical products.

Let me know if you discover another one of these secret FM products buried within a spoon or a desk or something!

Rozerem, back pain

I’m not having a great day, so this will be short-ish, but I thought it was important to write a post anyway. Lately I’ve been making an effort to do things even though I can’t do them as well as I’d like to. Will/desire is attempting to win out over perfectionism/paralysis.

a perfectionist:

I’ve been taking Rozerem (sleeping pill) for a few nights in the hopes that it will help with the dysautonomia and encourage my parasympathetic nervous system to kick in at night. So far, it’s actually been quite promising, and I’m really hopeful about the coming weeks (Dr. Silverman wants me to be on it for at least a couple months). I’ve noticed my energy level is slightly higher during the day (!).

I start feeling the effects of the pill about 30 min. after I take it, and after the first night it doesn’t even really feel like I’m drugged; instead, it feels like I am just getting naturally sleepy. This feeling is so wonderful I cannot even describe it! It is so exciting to feel sleepy at night, and to be able to fall asleep quickly after months of being always exhausted but never sleepy, and always taking hours to fall asleep. I’ve still been waking up in the middle of the night (especially because of Artie, the new snakey dog who has trouble understanding that he can’t sleep under the covers), but I fall back asleep almost immediately, which is exciting. The one drawback so far is that I’ve been sleeping too much (it doesn’t seem to wear off until I’ve slept for 9 or 10 hours), and I’m sleepy for about an hour after I wake up. However, in Rozerem’s fine print it says that in studies the morning sleepiness wears off after about 5 weeks. So at least it shouldn’t last forever.

I haven’t made an appointment with the biofeedback for heart rate variability guy yet. Sometimes I put off making new appointments like that — I think it’s partly because I like the feeling of hope that anticipating an appointment gives me, the idea that maybe I will find someone who can help me. Actually making the appointment and going there means I’ll find out if they really can help me, and usually they can’t, and then I’ll have to search all over again. Plus, it gets really old going to new doctors, driving there, sitting in waiting rooms, the fluorescent lights, filling out paperwork, explaining my health issues, hoping they take me and FM seriously, etc.

Here’s Maggie Taylor’s “Waiting:”

My back pain has been worse since yesterday (repotting a bunch of herbs while hunched over probably didn’t help…). The back pain definitely affects my general mood — I’m more irritable, tired, and tend more toward depression, partly because the back pain is fairly constant and I feel like I don’t have a lot of control over it. One of the worst parts of it is the associated nerve pain I get. The worst area is in the middle of my left thigh — at times it feels like a deep bruise that someone is punching, and other times it is much sharper, like the muscle is being filleted. Today the nerve pain isn’t too bad, though, it’s mainly the pain in my lower back which is limiting my movement.

Here is a bulging spinal disk, much like mine, for your viewing pleasure:

I wanted to show you a picture of scoliosis that would resemble mine, but most scoliosis curves are in the upper spine, whereas mine is in my lower spine. Plus, I feel like I am probably providing you with a few too many pictures of unfortunate things. Here are some lilacs and an enormous bird of paradise to make up for it:

So, as I’ve said, I’ve been having a less-than-lovely day. However, I just had a highly enjoyable phone conversation with my friend Josh while he had a delicious-sounding drink in New York City, and now I am feeling like the world is more exciting.

To attempt to continue this sense of excitement, I will leave you with this amusing Roz Chast cartoon (ah how I love Roz!!):

Happy Birthday Carson McCullers!

I’d like to wish Carson McCullers a slightly belated birthday (yesterday, Feb. 19th)!

“First of all, love is a joint experience between two persons — but the fact that it is a joint experience does not mean that it is a similar experience to the two people involved. There are the lover and the beloved, but these two come from different countries. Often the beloved is only a stimulus for all the stored-up love which had lain quiet within the lover for a long time hitherto. And somehow every lover knows this. He feels in his soul that his love is a solitary thing. He comes to know a new, strange loneliness and it is this knowledge which makes him suffer. So there is only one thing for the lover to do. He must house his love within himself as best he can; he must create for himself a whole new inward world — a world intense and strange, complete in himself. Let it be added here that this lover about whom we speak need not necessarily be a young man saving for a wedding ring — this lover can be man, woman, child, or indeed any human creature on this earth.

Now, the beloved can also be of any description. The most outlandish people can be the stimulus for love. A man may be a doddering great-grandfather and still love only a strange girl he saw in the streets of Cheehaw one afternoon two decades past. The preacher may love a fallen woman. The beloved may be treacherous, greasy-headed, and given to evil habits. Yes, and the lover may see this as clearly as anyone else — but that does not affect the evolution of his love one whit. A most mediocre person can be the object of a love which is wild, extravagant, and beautiful as the poison lilies of the swamp. A good man may be the stimulus for a love both violent and debased, or a jabbering madman may bring about in the soul of someone a tender and simple idyll. Therefore, the value and quality of any love is determined solely by the lover himself.

It is for this reason that most of us would rather love than be loved. Almost everyone wants to be the lover. And the curt truth is that, in a deep secret way, the state of being beloved is intolerable to many. The beloved fears and hates the lover, and with the best of reasons. For the lover is forever trying to strip bare his beloved. The lover craves any possible relation with the beloved, even if this experience can cause him only pain.”

~Carson McCullers, The Ballad of the Sad Cafe

Dysautonomia Part II

It’s official, I have dysautonomia!

Rob went in with me to talk with Dr. Silverman, which proved to be very helpful because as soon as we stepped out of the room I forgot several important pieces of information. Although I realize that there are many factors that effect memory, FM (and dysautonomia!) definitely have a large impact on my ability to concentrate and retain information on a daily basis. Sometimes it feels as though I am mentally carrying an enormous platter upon which hundreds of things are stacked, and with each step more and more items fall to the ground.




Or, it feels like the air is composed of thick, opaque curtains obscuring my view that I can never grope my way out of.

These cognitive issues, combined with exhaustion and pain, make taking classes extremely difficult (as you can imagine).

Okay, back to the diagnosis. Based on the 24 hour EKG thing I wore (called a Holter monitor), Dr. Silverman was able to look at how my sympathetic and parasympathetic nervous systems (the two parts of the autonomic nervous system, or ANS) were working when I was awake and asleep. Basically, my sympathetic nervous system (SNS), which is active during the day, is working at about 40% of the normal range. And: (!!) the lower end of the normal range for the parasympathetic nervous system (PNS), which is active at night and in charge of shutting/slowing down various physical activities, is 1700, whereas my PNS is negative 1600!!

In simple terms, this means that I never really sleep, and during the day I am not as awake as I should be. Dr. Silverman said that this explains why I wake up feeling as though I never went to sleep, and why my energy levels are so low.
Here is a low energy light bulb:

I Cannot Tell You how incredibly validating it was to hear this. While it is quite distressing that my body is this way, to have a discernible test performed that proves/illustrates that something is fundamentally wrong lends a whole new sense of legitimacy to how I feel every day. After going to several doctors who either barely cloak their doubt about the very existence of FM or directly express it, dismissing how I feel, it is amazing to have someone like Dr. Silverman confirm that what I’m going through is utterly real.

I’ve had the symptoms of dysautonomia for years, and now that I understand more of what has actually been going on with my very ability to be awake, asleep, alert, etc, I have renewed compassion for myself in terms of my struggles with school, which led me to leave Wellesley after my second year there.

I have a lot of residual criticism and resentment toward myself (a sense of failure, etc) surrounding my difficulties with school, and it’s a significant relief to receive validation about what’s happened/happening to me physically.

Also, I was under the impression that Mitral Valve Prolapse (where a valve in the heart occasionally sticks — this is not fatal unless it gets infected) was a part of the dysautonomia that I have (there are different types). However, I asked Dr. Silverman about this, and in his typical direct, almost gruff fashion, he said MVP is not a part of what I have. This is a relief, as I was expecting to have to take antibiotics before going to the dentist (apparently anything like gum bleeding can lead to this valve getting infected as part of MVP).

According to Dr. Silverman, there are a few different paths of treatment for dysautonomia. What he wants me to start with is a sleep medication called Rozerem,

(Here’s the ad for Rozerem — a man and his dreams, who miss him:)

which works differently than others in that it isn’t addictive, it doesn’t affect memory or balance, and it works specifically on the sleep-wake cycle, which I suppose is why he wants me to take it. I think this will help my PNS activate more at night.

He has also referred me to someone who does a specific type of biofeedback for “heart rate variability.” I will tell you more about this once I experience it myself.

the verdict (almost)

So on Friday I recieved a letter from Dr. Silverman, which I think informed me that I have dysautonomia. It was written oddly, so I am left with the tentative feeling that I either have the disease or I misinterpreted the letter. However, this feeling of being in limbo


will be dissolved this afternoon when I go in for my appointment with Dr. Silverman, in which he will give me the results, hopefully not in unclear terms. Rob has sweetly offered to go with me, and we may have lunch before the appointment, so that we can pretend that we intended to drive to Beverly Hills simply to have a scrumptious lunch, and dropped by at Dr. Silverman’s as a casual afterthought.

Alright, faceless people who may have stumbled across this blog while searching for gumby, I must go take a shower (perhaps I will discuss my arduous relationship with showers in a future post…get excited!).

I will leave you with two things I am excited about recently:

Joanna Newsom, who plays the harp and has the most bizarre voice and fantastic lyrics, with such words as “dirigibles” and “abominably” playing a central role:

And, mochi, which Ian thankfully introduced me to, and which I seem to be eating constantly (try it stuffed with capers and cheese!):

and here is someone’s cat named Mochi (apparently about to dive into the washing machine…?):

stay tuned for dysautonomia updates!