Category Archives: Occasionally

Hanging Out With My Pals Anxiety and Panic


I woke at 2:30 am, broke out in a sweat, and started panicking. It’s been an hour and half, and the panic party is still going strong, despite listening to some bilateral stimulation, repeating the word “okay” over and over again in my head, and silently reciting the alphabet over and over. Sometimes, those things distract me, but not this morning. Instead I am reviewing, over and over again, the fact that I got a little too drunk at dinner and may have slurred some words and been sloppy.

You would think I faced the electric chair, honestly, instead of maybe having had a little too much booze. Except, I really didn’t have any more than I normally have (less, actually) so what the hell happened? We had two margaritas in the late afternoon, something that is a bit of a weekend tradition. Then we met friends for dinner and split a bottle of wine between the two of us. Saving discussion of my tolerance and general habits, that’s not the usual level of consumption. Of course, alcohol is a favorite switch with which to whip myself in the morning, any morning, not just mornings that insist on starting at 2:30 am. I feel a little like I did the time I got all the mosquito bites and ended up slurring and spinning after three glasses of wine, and we *were* outside and the mosquitoes *were* bad, but I coated myself in Off, and I’m not itching much.

But all of that is just looping around and around in my head and nothing is stopping it. “You’ve made an ass of yourself” my brain insists, “You don’t remember the rest of the evening very clearly, you are a stupid, embarrassing person.” No, I tell my brain, no, this was not a cardinal sin, even if I did slur or stumble or not remember going to bed and vaguely recalling maybe taking a shower to rinse off the chemical warfare. But my thoughts loop on and on. My brain also wants me to know that now that I am up, and have been for awhile, that the rest of the weekend is ruined and I have foolishly wasted the chance to rest.

“Why did you go out at all?” my brain queries, “You were exhausted already.” Oh, I thought, that is true. I *was* completely exhausted. I have been in tech all week, starting with last Sunday night. On Sunday, Monday, Tuesday, Thursday and Friday I was watching the show. I wasn’t home before 9:30 pm, and I wasn’t asleep before 11:00 pm, and the one night I had off (Wednesday) I spent part of the night with my good friend and associate, Gnawing Stomach. The alarm went off every morning except yesterday at 5:45 am and I was up by 6:00am. But instead of thinking, in a forgiving of myself sort of way that maybe I simply pushed myself too far, I’m beating myself for my foolishness. What if I embarrassed myself? What kind of a jerk am I to meet up with someone for dinner and drink too much? That never happens to me.

Which would be a good reason to not freak out, right? I am not the person you don’t want to go out with because I’ll get all sloppy drunk and become slurred and overly sincere, so surely I have a free pass or two that are labelled “You Too Are Human.” My brain does not accept free passes, apparently. I am firmly, specifically, not allowed. I mean, what if I was a cute little drunk last night and did no harm? Could I let myself off the hook then? What if my immune system did flare and process things weirdly and so I lost some control? Why is it wrong to have an excuse?

In my whirling thoughts sort of way, I am obsessed with reconstructing the massacre. I did not have a good day pain-wise. My hands, thumbs, back, shoulder and hip were displeased with me. I did what I could to push it aside, because I had things I wanted to do. Even as I was happy to finally have a “day off”, I spent the better part of the day rendering for the show I’m designing this semester–which means I didn’t take the day off after all. Not that I hate spending a day drawing, but it was purely work-related, not something I was doing for myself. I didn’t finish the next page in the coloring book, I rendered a character’s costumes in full color and two views.

And here I sit, at nearly 4:30 am, nervous and wired and guilty. I have noted that I texted my friend and apologized for being drunk, and she said she likes me in any state including intoxicated. But I don’t feel better, oh no, that is expressly not allowed. Why does my brain sabotage me in this way? I don’t know. I’m also obsessing about the things I have to do today; like visiting my friend with brain damage and stopping by my mother’s house to look at tile samples. I could let both of those things go, but I won’t because I don’t feel I have a valid excuse. Then there’s the grocery store, meal planning, laundry….and then it’ll be back to work, tired and worn out instead of rested.

It seems that coping with this chronic, permanent, degenerative condition is constantly forcing me to re-evaluate my life and accept limitations. I don’t like it, I’m not happy, but clearly I’m doing something wrong or I’d be sleeping right now instead of splashing in a puddle of anxiety. At least, that’s what I imagine I’d be doing.

Where Have I Been? Nowhere, Just Here.


Broken Ankle Update:

No invasive surgery required. Instead, they did a “closed reduction,” meaning they knocked the child out with general and manipulated the bones into place (note: you must be very strong to be an orthopedic surgeon) and put him in a long cast. The “long cast” goes above the knee so that he can’t move the tibia at all. It sucks in terms of mobility since he can’t bend his knee. That cast stays on for three weeks, then a short cast for four weeks, then a boot, then physical therapy.

Vacation Update:

See above. No vacation.

Art Update:

I have decided to pitch an adult coloring book to a publisher, so I’m working like crazy on that and forcing out all insecure thoughts. If I can’t get published that way, I will self-publish. I think I am onto something here, and it’s an exciting prospect.

Sewing Update:

Still sewing, but nothing too interesting right now. I need a good camera so I can actually take professional looking photos of my work instead of crappy photos on my phone or iPad.

EDS Update:

Christ on a cracker, it sucks.

1. Massage has stopped helping. I’ve been trying to avoid voicing this reality, since it means I no longer have anything for managing pain. That’s a really unpleasant place to find oneself. But, for $95 a week I should be feeling relief for at least a few days afterward, and I’m not. Sometimes I feel worse. I have to figure out how to man up and tell my therapist this, since I like her a lot and it’s not her fault but I do have to stop throwing money away.

2. About two weeks ago my left thumb chose to lose about 30% of my pinch and grasp ability. I can’t lift anything of weight (like a plate of dinner) with either hand if the weight is mostly to go to my thumb. I feel like I have silly paddle hands as I try to work around this, and it’s painful. I can’t have my CMC joints fused unless I am ready to quit my job and possibly lose the dexterity I need to sew and draw. Which is sort of the same as saying I have to give up oxygen. So I’m stuck.

3. My shoulders are worse again, and I cannot under any circumstances sleep on my right side. I wake up around 2:00 am every morning because I am in pain, and it can take up to two hours to get back to sleep. Sometimes I can be sitting at the table talking to someone and a third of my brain is occupied with how much it hurts to just deal with the weight of my shoulders hanging off my neck.

4. My back is verily fucked up and hurts all the time. I have two degenerated discs in the lower back (L4 and L5) and what I probably really need is to get a chiropractic adjustment. But, that is problematic for EDS, and so I have mostly given up on it at this point. My last stab at that was my PCP putting my upper rib back in place and it popped right the hell back out within hours, so that was a wash.

5. 80% of the time, or more, I can deal with my level of daily pain. Sometimes, though, it just seems like it is far more than a person should be asked to deal with, and I have a day or days of feeling really angry and frustrated and sad about being in pain every single damn day. Which is why it’s hard to give up massage. This weekend is one of those points where I’ve had it with my body and my discomfort and there’s going to be a pity party. Which is not a party I can even enjoy.

Overall Update:

Ugh, except for art, which is good.

Hierarchy of Agonies


Of course there is one. My back hurts, I rank it a legit, understandable pain. My left knee hurts I rank it as legitimate-I-guess but also unwarranted, knee, settle down. My ankles hurt and they rank Legit, geez, one look at the MRI(s) and clearly, how could they not hurt?

But there is this one thing that happens that makes me furiously, unreasonably angry and I rank it as entirely stupid. A stupid, stupid, stupid pain, not legit. Sometimes I get a muscle spasm of some sort in my scalp, and it’s like being stabbed, STABBED, every 30 seconds or so. It’s the kind of pain that if it just turned on and never turned off, I’d be on the floor and incoherent in mere minutes, but instead I get little breaks in-between (kind of like labor, now that I think about it). Just long enough to cringe in anticipation of the stab and then feel extremely angry when it happens again. Stoppit, I tell it. “You are not a real pain. You are not legit, go away.” When I try to explain it to people they can’t understand it. No one else I know has ever had this particular pain.

I imagine that all my other pains, my Legit Pains, they would cut this pain and close ranks and whisper when it walked by, they would go all Mean Girls on this pain, because it doesn’t count, it’s stupid, it’s dumb, its mother wears combat boots. I have trouble being even a little bit nice when this pain is happening, it hurts so much. I consider trying my own form of acupuncture with my quilting pins, I jam my knuckle into it and try to crush it out of the way.

It’s funny how my mind can’t just go, “Oh, that is pain.” and instead sorts them and hugs some and kicks others in the pants and keeps on sorting like a bouncer at an exclusive club. “You, you, you…okay, I guess you, but watch it, you….WAIT A MINNIT THERE PAL YOU AIN’T IN DIS HERE CLUB, SEE, yous can take yer bizness elsewhere, hear?”

But Mr Scalp Spasm, he doesn’t really care. He just takes a breath, waits a beat, and stabs me again. Bastard.

The Facade


“You look lovely this morning,” my husband said as I was finishing getting dressed. “Thanks,” I said, “It’s how I pretend that I feel good.”

Part of me feels like that’s quite the attention-seeking statement, because I am highly allergic to attention seeking. I attract, like moths to flame, people who are pathological attention-seekers and who would squeeze me into the tiniest corner in the tiniest room in the tiniest place in the world in order to demand all possible attention. Thus, my own sense of what is appropriate in terms of one’s need for attention is flawed the other way; I learned to take pride in being stuffed into that tiny corner. For example, there are some very stressful things going on in my and my husband’s respective familes right now, but when my co-worker said that I seemed really down, was everything okay? I was initially uncomfortable and then critical of myself that I let anything show. I have done enough work on my life that I was able to reply that I am very stressed and sad about some family issues instead of what my training as tiny would instruct, which would be to insist that I was okay, or, short of that, that I am simply “tired.”

It’s normal, it’s normal, it’s normal to sometimes show your personal emotional state on your face and in your limbs and voice. But I cringe away, fearing I will become the sort of monster that I have spent much of my life trying to separate from, even as more and more of them are attracted to me. Sometimes I feel like I have to shovel away the piles of narcissistic screams and demands just to get out to my car. I can’t say anything on Facebook without someone jumping in and taking over, I can’t go anywhere without being asked first about someone else’s situation instead of my own, more of my time is spent talking to my mother about someone else’s issues instead of mine. These are all things I work very hard at balancing so that I don’t find myself stuffed into that little corner; or at least so that I haven’t agreed to stay in that corner so that other people can shout over me.

My Facade is part of that; I don’t want anyone today to look at me and think, “She looks like she spent 45 minutes in the bathroom due to a huge IBS/Mast Cell flare-up and can’t stop scratching her legs and is deeply freaked.” One thing I’ve learned is that people do not look closely at other people for the most part.There are those of us who are keenly observant and empathetic who *do* look at other people closely enough to be able to pick up on their cues, but that is not most people. So if I have on a great outfit and makeup and my (currently, newly dyed) green hair, nobody is going to watch more closely to see how much I am wringing my hands because they hurt or rubbing my wrists or privately despairing that my gut will ever work properly and panicking at every gurgle or pop that I will experience intestinal betrayal while away from home. They don’t notice that my husband and child hold nearly every door open for me, they don’t notice my good friend gripping my elbow if she and I are walking over rough terrain.

Just as it is unhealthy to seek attention at all costs, it’s also unhealthy to refuse to admit that one isn’t perfectly perfect all the time. Having been in a life-long, tremendously unhealthy relationship with someone who is pathologically unable to stop demanding all the attention, I can tell you that the day I began to speak up in even the slightest bit, the response was furious and uncontrolled and savage. How dare I demand anything when my issues could never, ever, top the other person’s? Because it’s not a contest. Still, my reactionary position is to avoid ever doing anything that might engender other people to compare me to that person. So, if someone is wildly, exaggeratedly sick, I must present myself as entirely well. But that can’t work as a long-term strategy. Part of writing this blog is, for me, about staking out a bigger space where there is some room for me and I won’t be pushed back into a corner.

It’s unlikely that you’ll see a picture of me without makeup, unwashed and wearing the clothes I slept in, but it’s at least a place where I can say that I don’t feel well, I have pain, I am anxious. Even though I look nice.

“Why?” Is Probably a Useless Question


Sometimes I wake up feeling low. I’m not in any more pain than usual, but I feel like I am defeated anyway. My brain reminds me that I live with this level of pain all the time, and do okay with it, so what’s the deal today? I review, as I lay in bed,all the things that are good:

We had friends over (impromptu) last night and clicked with them (couple friends are SO hard to find, it’s a tricky dynamic). We did not stay up too late, we did not over-imbibe, I didn’t eat too much, my stomach didn’t demand my attention at 3:00 am (Not much. All it needed was a glass of cold water to put it to bed). I did not wake up with my internal judge saying, “I can’t believe you said/did that!”

I have the next three days off work, I will have time to draw and sew, I feel inspired creatively.

So, then, what gives? My brain; really, my ego, could spend hours trying to figure out why I feel down and also judging me for feeling down and criticizing me for being down, running back to the above and demanding why I would be so perverse as to dare to feel down after a nice night? What the hell is wrong with you, my inner judge demands.

I try sometimes to imagine if someone else were telling me this, and what I would say.

Your pain level doesn’t have to change for you to have a day where even though you’ve carried this load well for X amount of time, you don’t have a moment where you are tired and resentful of the burden. If someone pinched you everyday, even though you know that it will hurt for a moment and feel better, you’d still probably have days where you felt like if someone pinched you even one more damn time, you might lose your mind—or even feel sad knowing that you’re going to be pinched every single day and fearful that someone might start pinching you two or more times a day, but there won’t be a day with no pinching ever again. 

The husband half of the new couple friends was interested in my gluten free status, and I said that I had tried it for joint pain, which hadn’t worked, but it did help my gut. This is my general very vague explanation. Later he asked me more about this joint pain, what was it, and I explained the whole EDS thing. His sister is an internist and rheumatologist who practices in a nearby (3 hours away) city, and sounds like a possible candidate to manage me. The wife half has a brother with an unusual genetic condition that the husband’s sister has helped with, so they are a bit familiar with my world.  My ego is like, “DUDE, that is seriously good news, what the hell is wrong with you?”

The fact that maybe finding a doctor is good news doesn’t also mean that you can’t wish you didn’t need a doctor and that you didn’t have anything so unusual wrong with you and that you don’t want people to feel sorry for you even as you know of course they would, who would want their friend to have this crappy disorder? They probably don’t view you as an object of pity, they just want to help–but it’s okay to wish you didn’t need any help in the first place. 

Also I hurt my thumb yesterday, doing something that I judge as being not a valid thing to hurt yourself doing. I was turning a piece of fabric that would be a tie on a dress, and the pinching and pulling action of doing that suddenly hurt like hell and made it feel like I’d torn my thumb out of the socket. Which, maybe I did, that can happen. It’s a small thing, though, and there are better ways to accomplish what I was doing so that it isn’t as painful but dammit, there is a lot riding on my hands not breaking down, even as I know they are.

Of course you are going to feel upset by being defeated by what seems like a small task–we know the big things we can’t do, but when we run into these tiny things it’s terribly frustrating and scary. Also, given that you can’t take anything for pain, *any* new pain feels a little bit like it’s just way too much to deal with. That’s perfectly understandable. 

But, I do not have time for this feeling. I need to be steaming forward on my life, not sitting around feeling like crying over things I can’t do anything about. I’ve got stuff to do, and I want to do it. I haven’t got space in my life for moping.

Maybe you should take it easy on yourself. Let yourself feel how you are feeling. Crying isn’t the worst activity in the world, you know. Give yourself a break. 

Ah, yes. Give myself a break. So much harder than it sounds.



It’s raining. It’s been gray for oh, I don’t know, the last five days or seven hundred years or anyway, I’ve had enough. Yeah, sure, like all my friends growing up in the desert Southwest I said, in high school, “WHEN I CAN I’M MOVING TO SEATTLE WHERE IT RAINS EVERY GODDAMNED DAY BECAUSE.”  Then, I got to move to upstate New York and one day my mother in law called me and said, “You might have Seasonal Affective Disorder, get some plant lights.” I had NO IDEA how much I needed the sun and how depressing a dark house is or how wrong it was to plant those plant-light nurtured gardenias in the front bed as we left military housing. I bet they were dead before we even got off post. I’m sorry, gardenias, please let the sun come back.

But this grayness, it is too much. As I sat through a three and a half hour meeting today in an entirely glass room (the curtains were mostly closed) where I could see all that gorgeous weather, I could appreciate it, yet still I wanted to crawl under the table with my blankie and take a nap. Instead my coworker and I texted each other about how awful the meeting was, how awesome my new purse is, and I doodled a billion odd women and a few men on the agenda. I mostly stuck to my resolution to observe and find humor, so when my other coworker The Director made his stand on an issue and began speaking in slogans I giggled quietly to myself, and when Mr. Wonderful who is, like, 14 (I am that age now where everyone seems too young to drive or even tie their shoes yet they seem to have jobs and can prescribe medication) misunderstood the question and gifted us with wise ideas for fundraising that were right up there with “bake sale” I tittered softly. When Ms Amazing (this is not a sarcastic title, unlike Mr. Wonderful, which is TOTALLY sarcastic) filled a plastic coffee mug with leftover sweet potato salad I pointed out that it looked like she’d just puked in her mug at a frat party and she was not particularly happy with my imagery but I found myself pretty damn funny.

The meeting is over, which is awesome, although it is still raining, which is decidedly not awesome. My body does not like the cold at all; my internal thermometer and thermostat are unregulated like the 1929 stock market and I am frequently suddenly FREEZING and my hands go numb and I can’t warm up and then suddenly I am ROASTING my god it’s so hot, etc. This is not optimal for a person who is almost always dressed to the point of wearing a costume and wants to look cool and otherworldly instead of old and vaguely weird. Vaguely; ha ha, VAGUELY is not part of my presentation. WEIRD, on the other hand, plays a strong role.

Tomorrow is the first day of classes and I need to be ready to sling some amazeballs at those hungry college students so that they fear, respect and admire me all at once. This is generally doable, but I swear ta gawd I’m going to need some SUNLIGHT.

Nice Is Nice But Also Boring


Xena told me today that I’ve seemed weird lately. I immediately took great umbrage and thrashed her.

No, I didn’t. I said, smart-ass that I am, “Well, as it happens I have been feeling less bitter and hostile, and my aura of pleasantness and, dare I say, optimism has many people quite stymied.”

It’s true. I found out that a coworker is not, actually, plotting against me and actually thinks I am an asset to the team. The gallery I was dreading trying to retrieve my work from called to say they’re closing their doors and had all my work ready for me. My boss told me that a future job that I thought was entirely outside my grasp was actually something I could be considered for. Then he asked me to be the costume designer for a play he’s directing at a local theater.

Knowing that my coworker isn’t harboring grudges and actively trying to thwart me has released me to see that behaviors I interpret as personal aren’t personal, they’re this person’s own pathology and not related to me. It turns out that I am *not* the center of the universe.

I know, right?

Getting my work back means the potential for an unpleasant confrontation has been avoided. I think it’s weird to hang all your own work up in your house, but what the hell will I do with art no one bought? I hung most of it up. Buy my art if you think it’s weird.

The new shrink is helping. Sometimes it’s just the tiniest nudge to get you where you need to be, and while I think she feels like she’s doing little, I feel like it’s what I needed. We’re in a really intense, heavily physically draining period at work, and each day I’ve come home, taken a bath, and put on comfortable clothes before fixing dinner. Doesn’t sound like much, but it’s something I felt would be giving up before–taking off my fabulous outfit before bedtime? My husband would reject me out of hand for that!

Except; I’m relieved of some of the pain that built up over the day, and feel less constrained and bound up. Apparently, this is a good thing. It’s seeing the shrink and confessing how my mind works that has gotten me to wise up a bit. Having to say to someone, out loud, that you think that putting on leggings, a tank top, and no bra will end your marriage forces you to examine that depraved shit that just came out of your mouth.

Lesson: A great deal of internal dialogue sounds incredibly stupid when repeated to a professional. This can be helpful if you can get through the squirming.

Soon I will post the great things I am building at work, and the equally cool stuff I’m making at home. For now, though, I’m going to be grateful and aware that for however long it may last, I feel okay about where I’m at.