Category Archives: This is Boring

“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.

Shoe Despair


I ordered three pair of what I guess I’d call “rich old lady” shoes. Regular old lady shoes are these. Or these. Or these.

I bought these:


And also these:


And then I really went for it and got these:


The teal, 40s-style ones arrived first. They have soft beds and arch supports and flexible toes and they are stable and I (hardly) don’t wobble at all. I wore them sparingly, a few hours at a time, not in the house (where I am most of the time). Then the flesh-toned Pikalinos arrived and I wore them today. They are both lovely, I can work with them, they are not too much of a step down into Sass land. Stable. Supportive.

I have also just determined that what I am feeling today is peroneal tendonosis.

These and the boots were my treat to myself after finishing a very, very difficult commission (more on that tomorrow). The carrot on the stick that helped me avoid saying anything inappropriate or firing my client or throwing the silk dress I built out the window. I was proud of myself for finding “good” shoes. I allowed myself to spend the money (serious bank, those first two pairs were each a bit over 100 clams each) and thought, “This beats the shit out of the money I spent on useless physical therapy and useless occupational therapy and expensive [two of which have broken] silver ring splints and expensive CMC splints last summer.”

Say it with me. Peroneal Tendonosis. Notice in the link that it’s a repetitive use thing. Or, for someone with EDS, a just plain “uses it to do regular stuff” thing.

Then, there are the boots. They. Are. Gorgeous. EXPENSIVE. On sale for $237.00. “I am worth it,” I said to myself. These will last 100 years.

They are really heavy. Pull on my hips and ankles heavy.

Works of art. Lacing up the back that needs to be re-laced in silk ribbons. Made For Walking.

Peroneal Tendonosis and Heavy Boots.

I’m not happy, but I’m feeling pretty rebellious and all, “What’s a little foot pain, huh?” “What’s a little hip and ankle pain?” After all, if I quit doing everything that causes me hip, back or knee pain I might as well join the nunnery. I’ll just grimace and bear it, I cry! So what if my foot hurts! At least it hurts in awesome, defensible, smart shoes!

That’ll last.


On the Subject of Shoes


I have a deep and abiding love for shoes. I often plan what I’m wearing around a pair of shoes rather than vice versa. Since being diagnosed with EDS and hitting a sudden decline (which seems very common…deterioration is not a gradual thing, rather it seems to periodically leap forward all of a sudden), I have had to stop wearing a lot of my shoes. Last summer I cleaned out my closet and evaluated all my shoes.

Note: I am a minor Imelda Marcos and no one “needs” as many shoes as I have but that’s not the discussion I’m having.

Of the maybe 45+ pairs of shoes (go read the note above again), I gave 17 pairs to Xena. The vast majority of them were not simply shoes I was tired of wearing, but wonderful, fabulous shoes that knew in my heart I could not wear without experiencing hip, knee and back pain as well as increasing the odds that I would fall down. I held back several more pairs that were like pieces of art and bargained that I could wear them on occasion. The good thing about giving them to Xena is that a) I like her and it makes her happy and b) I get to see those great shoes on someone’s feet instead of in a box in my closet and c) should I suddenly think that I need to wear one of them, I know where they are.

This past semester, I determined that not only are most heels over 1.5″ out, so are ballet-style flats. You know, the seemingly more sensible ones. Flats like that are just about as bad for me as heels, and hurt my feet and ankles significantly. I recall the physical therapist from last summer eyeing my shoes pretty critically–and that was when I thought I was wearing something reasonable. She asked if I had good sneakers, or some Earth Shoe clogs.

The answer to that is a firm NO. I do not own those things. I do own a pair of “Mom Sketchers”  but being recalcitrant in general I made a point of never wearing them to PT.

So, this summer, I’ve culled another 10-12 pairs of shoes, some of which are the most beautiful shoes I’ve ever owned, like this pair only in browns so it was higher contrast, more 1940s, Katherine Hepburn, editor looking. I’ve worn them once. I’ve also given her this pair that I don’t think I ever got to wear. I gave her a pair of Chelsea Crew shoes that I thought wouldn’t be too high but of course they are–they are siren red, 1930s-style and stunning. I have several pair of flats to follow up on that. Of the shoes I’ve kept, several are also no longer very wearable for me, but I cannot give them up and will break them out on occasion when I go somewhere that I can be dropped off at the door and then hang on to the arm of my date (who is almost always my husband, or sometimes Xena, who is very sweet to offer an arm as if we just like each other so much as opposed to making sure I don’t fall down [which is not to say we don’t like each other very much, know what I mean?]).

That leaves me with actually not that many options for actual daily shoes. I’ve picked up several pair of cheap oxford-style lady shoes but they don’t do much for summer wear. No matter what I am wearing in the world, when I get home I put on a pair of hideous Spenco flip-flops that are orthotic in nature. In winter it’s the mukluk style Earth boots. I am feeling bereft, and also like given that I’ve now dumped probably a thousand dollars or more worth of shoes, don’t I deserve replacements?

I have ordered a pair of these shoes in the vague hope that they are supportive and comfortable and not ugly.  They are recommended by I have these two pair in my shopping cart at Zappos. Wolky boots that are outrageously priced on sale and a pair of Pikolinos. There is really no way that I can justify dropping over $500 on shoes unless I listen to the sulky lady who feels like she can’t let her appearance go.

Reasonable or not, I cannot let my appearance go. I can’t have people looking at me and thinking, Oh, poor thing, she’s had to give up. Getting dressed, for me, is a form of artistic expression (First World problem but guess where I live? In the First World) and I cannot abide velcro and wide footbeds and ugly shoes. Which puts me in a tough spot, since I also cannot abide shoes that hurt me to wear–no one will see my fabulous outfit if I am at home on the heating pad.

Most likely my cart will expire and the Woklys and Pikalinos will stay where they are. Maybe.

Possibly More Boring


Two months ago or so, I was realizing that I couldn’t achieve my dream–being a Costume Designer. I could get proximity to it through my job, but I’d never be able to get the right degree. At the same time, I was realizing that I resented the fact that I work very hard, and have a set of very specific and specialized skills, yet am paid so little that there would be no way for me to actually support myself on my income alone.

No, I don’t mean that I wouldn’t be able to support myself “to the degree to which I had become accustomed” but that even with a masters degree, a highly specialized skill set, intelligence and talent, I’d be the sort of working poor that couldn’t pay rent, afford medical care, or have cable, internet and electricity at the same time.

At the same time, as I finish my fourth year in this job, I realized that I was taking on more and more responsibilities and duties, but with no possibility of advancement. I started talking to my boss about that fact. He started working on realigning my responsibilities, but also on possibly reclassifying me and getting me a raise.

We’ve talked through several scenarios, and then, rather suddenly, a path opened up.

My boss told me today that as of August 01, 2014, I will no longer be a “Program Coordinator Level 06” but a “Costume Designer.” Poof. I’m a princess. The Dean has agreed to supply the funds for a 30% raise. It’s not parity yet, but it’s a huge step forward, and the title is a gigantic, amazing thing. It means that my co-worker and I are now classified the same. It means that each year, at my evaluation, I will ask for an “equity raise” as currently, today, my coworker makes more than twice what I make and does not have the scope of duties that I do.

Within two years, then, it’s possible that I will be paid much closer to what I am worth, and when my coworker retires I won’t even have to apply for that job if I want it, because, see–I will already have it. I am a costume designer. I design and construct costumes, fit and alter costumes to fit actors, supervise student labor in costume construction, manage production and overhead budgets for the costume shop, design and apply makeup for stage, teach classes, supervise the strike of costumes from each production, manage stock rentals, control, manage, maintain and inventory stock, arrange dressing areas for actors, supervise costume running crews and hire student employees.

I also get to keep the 9 month contract that gives me time to rest so that despite EDS, I can still do my job. We’re closing in on the end of a really intense period at work, but even though I’m hurting and tired, I know the end is near and I’ll have a few weeks to close out the semester and then the summer to rest. And when I come back? I get that new title and paycheck  and still get paid to do what I love doing.

I’m glad I’ve hung in there, and I’m glad I have a great boss. Sometimes those things really pay off.


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.


The Odd Anxiety


When I started my job as a Costume Shop Manager, it was with no real background in theater. By “no real” I mean, none whatsoever. You know how it is when you start a job; the first year feels like you are just following a coworker around learning how things are done. Then, as you warm to it, maybe you start putting your signature on things, consolidating your power base, etc. My job involves some power struggle because I am newer and because if you have more than two people in a room, there’s generally going to be a struggle at some point–it’s human nature.

You often are told that something is “the way it is” that actually isn’t that way at all. It’s just the culture up until you arrived. I’ve been at this job for three and half years and I have never taken a sick day or a day of leave because I was told that a) we don’t take leave during the semester, and b) we have enough flexibility that you can be home sick without having to formally take leave. After all, we work a lot of hours during certain parts of the semester that we aren’t getting paid for. Which is not necessarily true, since we are salaried, but it is also true that working a 60+ hour week sucks and I’m not going to stay at work unless I have something to do.

If you are an HR administrator, the hair on the back of your neck just stood up, right? We’ve got a streak of maverick in how we do things, and a natural Us/Them mentality. It’s just how things are in my workplace. It’s how things have always been. There’s also the pull of the title of BEST or Martyr. “I’ve NEVER had a sick day.” or “I’ve never taken a day of leave.” This is seductive because who doesn’t want to be a hero? It’s just like those kids in school who had the “Perfect Attendance” awards. Is that really realistic? How often did they come to school sick in the name of attendance? It creates a contest where there needn’t be one, but I am competitive and sometimes have to ask myself just why I’m even playing the game. Sometimes it’s better to let someone else win.

Even though I feel entirely justified in taking a Friday and a Monday off, putting that request in writing to my boss made me feel really nervous, even though I know he has no issue with it whatsoever.  I’ll be rocking the boat, and bowing out of the contest. But, also, I’ll be putting my health above my job, and as unpopular as that may be, this past year has reminded me that my health is not something that will just run in the background. I need to tend to it, and also take opportunities when they present themselves. Especially if it means getting a weekend in Santa Fe.