Category Archives: Being a Woman

Of Various and Sundry Tragedies


Artful Blasphemy has been eating up a lot of my time, but so have stress, sorrow and anxiety. 

EDS News:

I saw the Physiatrist last week, and he felt that my shoulder is impinged. We discussed, pretty thoroughly, my concerns about steroid injections, and he felt that it would only take one shot to fix it. So I agreed. So far, it is sore, and I’ve postponed trying to sleep on that side because I’m not ready to deal with the possibility of this treatment failing. He also wanted to try Effexor, which he said some people who do badly on Cymbalta can tolerate, and some can’t. I started it Thursday night, and I feel a little clenchy, and a little weird, and I can’t decide if it’s the drug or if I’m just paranoid due to so many paradoxical responses. Being stuck in mental debate is always fun. 

That afternoon my back spasmed horribly, and I had to go home and ice my shoulder while soaking my back in a hot bath and crying over the perfect storm of awful that has struck my life this past week.  


Since my new department chair gave my co-worker more power, she has become impossible to work with–and this while she thinks things are going great (why wouldn’t she?). She countermands me, invalidates me and yet needs me or else she can’t do her own job. She barges into fittings, snatching them from my hands and announcing to students, “Everyone does this WRONG, nobody understands this.” Were I to confront her, she would suddenly “not remember” doing that. I’ve been down this road before with her. I’ve reached the point where I hate her, I am miserable at work, and I fantasize that I will, at some point, simply put down my scissors and walk away, never to return. 

I have to somehow deal with all of that while I am in pain, icing my shoulder, nursing my back, and appearing to be graceful and resilient. I don’t feel like I am either, but maybe I was meant for the stage after all. 


My mother has dated a man for two and half years, whom I liked. She has been so very, very happy–they travel, they shop, they have fun together. Until last week, when apparently she found out that he had hidden something from her that was an absolute deal-breaker. I have been utterly heartbroken for her; I cannot fathom the pain she is in and would do anything for her to not have it. I was so happy that she had love and joy in her life, and I feel really bitterly about this man turning out to be someone he said he wasn’t. My poor, poor mom, you know? 

More Life: 

Many of you with chronic pain know that sometimes a pet is the very best pain medication there is. We found out this week that my soul-mate dog has a cancerous tumor in her leg that is inoperable because of where it is. I am completely unprepared to lose this dog. We have the option of amputating the leg and hoping it hasn’t spread, but she has arthritis in her back and slight dysplasia so we are not sure if she can handle only one hind leg. I have no intention of making her suffer because I can’t let go, but I also feel unable to cope with losing her. It’s a really hard decision, and instead of making it I’ve just broken all the rules and let her sleep in our bed each night. I am too emotionally reliant on her, yet I must make a really painful decision on her behalf that she won’t understand. 

So it’s fitting that Artful Blasphemy just started the first edition of “I Hate Sundays” because it’s Sunday, it’s not even 9:00 am, and I am just suffused with dread about going back to work tomorrow. Perfect. 

Like The Star Wars Trash Compactor


I am having a hard time with having lost Boris (our small Mexican dog with the big Eastern European name) and doubting my choice to let him go. Not in any rational sense; on paper, logically, I know I did the right thing. But in my heart, I feel sorry and sad. I hope he understands; but maybe not–I’d love a world where animals had the same treatment as people, but would I love that because no one would get euthanized for having run out of quality time, or because people wouldn’t have to suffer for so long, either?

I just know that I really, really miss that little guy, and I am responsible for his absence.


The trip to Chicago was really emotionally hard, and the key piece of that was understanding that I can’t depend on my spouse to advocate effectively for me when he is in his place of origin. On one level, I get it–he reverts to his kid role, he’s overwhelmed, they are extremely difficult. On the other hand, I’m angry and disappointed. I really am on my own, and since that is true, I will never go back with him to visit them unless something is really wrong on a deathbed sort of level. I can’t put myself through that. If they come here, as they have threatened, I will go out of town. I’ve given a lot to them over the years, and they’ve taken a lot more than they’ve given back, and their son can’t set good boundaries with them. So, I will have to set boundaries to take care of myself.


Long after I am gone, I am sure medical science and genetics will evolve to determine how mental illness–or at least the propensity for it–is passed down. Borderline personality disorder runs in my family, and while I am sure the process is somewhat akin to alchemy more than straight genetics, it means that right now there are two Borderlines running about– each from a different generation. That’s just my mom’s side, too–there’s also depression, anxiety, alcoholism, sociopaths, suicide, self injury and drug problems coming from both sides. The question maybe is how do any of us make it out alive? When you know that someone is ill, and you’ve proven to yourself that you cannot help them, you have to detach and protect yourself. Sure, their behavior isn’t personal, it’s pathology, and yes, they are in tremendous pain, but that doesn’t mean you should allow them to hurt you. The moat is in place, the drawbridge is up. All signs say, “Go away.”

You’ve reached the boundary, you’ll need to turn back.


One of my tenants called me today, in tears. One of the roommates’ mother had committed suicide last night. Walked out of the room from an argument with her kids and killed herself. The tenant who called me kept saying she was sorry for burdening me and I told her she wasn’t, I care about her, it’s a horrible thing. I reminded her to take care of herself so that she can keep on being a good friend to her roommate. I told her that her grief is valid, and doesn’t need to be measured against the roommate’s. Gosh, there’s enough grief to go around, really–you won’t run out, or take someone else’s, go ahead and grieve. I suggested that she not judge anyone for how they act right now; grief does strange things to a person, and suicide is like knowing an asteroid is coming to vaporize you–maybe then it might seem rational to ask about how much the house is worth or what should be done with the cars–those are solvable problems, whereas the asteroid is just this terrible thing hovering above your head. Maybe it’s not possible to look right at it; at least not at first. I told her we’d cover the rent if it was late, not to worry.

I revisited, for a moment, Ray and Ruby and John. But then I let them go back to their places. You never get over it, I told my tenant, but you learn to live with it. It takes a long, long time.


The theme is who do I have to take care of, and how much? I have to take care of myself. I have to take care of my child. For ten minutes on the phone I can take care of my tenant. I do not have to take care of people whose mental illness could cause them to harm me. I do not have to take care of people who have no space in their lives for me. I do not have to take care of people who aren’t doing their work.

The shrink said that when we’re about to refine something, or pass to another level of understanding, just before we get there it feels like the walls are closing in, and the problem is everywhere. All around me demands are being made for my attention and energy. People want me to put them ahead of myself. So each time I say no, I’m moving forward. No, you cannot come to my house and ring my doorbell a million times and pound on the door. No, I won’t go on a trip where I will be lonely and ignored and pushed beyond my limits. No, I will not act as a buffer for you to avoid your family.

She also suggested that I probably need a really good cry. This is also true, but a far more elusive beast.

The Muse is Accustomed to Being Fired


I’ve had to let the muse go due to intense hip, back, shoulder, wrist and hand pain. No longer am I enamored of my patchwork collection, instead I am judging it wanting and a waste of time. It probably isn’t either of those things but the chronic-pain-colored glasses view it as such. Every step I took yesterday hurt my hips like a wide band across my lap, from deep in the joint to radiating outward over the muscles of my thighs. By the end of the day, of course, it was worse and I lost my composure entirely and had a sobbing fit in my bed while the husband and the dog tried to figure out what to do with me.

I suspect my emotional fragility at the moment is partly due to the above and maybe somewhat influenced by hormones (O, perimenopause, you wretched, wretched bitch). While I cavalierly said I didn’t care if I was once again making a collection of things no one would buy, today I DO care about this and perused my Etsy shop just to make myself feel worse. I don’t know why I cling to Etsy when I haven’t the time to devote to keeping it up. It’s the excuse for my thrifting addiction, “I can sell it on Etsy” but no, no I can’t, not consistently. There are times, like today, when I feel like my constant making of things is foolish and sad since rarely do I have an answer to “What will you do with this?” or “Who would buy this?” Earlier this week I was content to simply be creating, happy to be in the process and satisfied by the process and the products. But the process that makes me so happy and satisfied is the same process that means I was in bed crying at 8:00 pm due to pain.

The Shrink and I are working very hard on being in the Now, since that’s the only thing we have any control over. Last night, eyes leaking, my brain kept saying, “Okay, so this is the Now but the Now is horrible and what if it’s the new forever (no, no, forgive yourself for that and go back to now) Now sucks, Now is awful!” Or, as my husband finally put it (canceling out hours of mental looping and self-criticism) “Today’s just a bad day.” Yes. And I have to learn not to then tack on, “And what if tomorrow is, too? Or worse?” Because I don’t know that, and I can’t determine that until tomorrow becomes the Now. It’s a bit of a rabbit hole.

So today is slightly better so far except that I feel like a giant, potentially leaky vessel of tears. I have a massage and maybe that will ease some of the pain. Maybe I will look at my last assemblage of pieces and find it more favorable than I did yesterday. Maybe tonight will not be a night wherein I find myself freaked out about not having pain drugs, sobbing into the dog’s neck and panicking about the future. A future in which I will possibly drown in clothes, fabric, and partially finished quilts.

Mid-Week Breakdown


Sunday: Faced with more foolishness on the part of clueless, self-involved students than perhaps a mere two hours can hold, yet there it was. Snapped at someone. Sent someone else a meme of a double face palm rather than a written response because truly, the fail was too epic for words.

Monday: Noticed that my ankles hurt more than usual, as did my hip and back. Put on my ankle compression socks and my best boots (Born, riding boots, supremely comfortable and not dorky). Determined by the time I got to work that my ankles were horrid, hurting in the front with every step so that getting from the parking lot to the Shop was nearly unbearable. Suffered in silence all day. Child I snapped at emailed and requested a meeting in person about our “misunderstanding.” Assumed the worst on that. Barely made it out to the car to go home. Googled the ankle pain and came up with “anterior impingement”—indicating that each time my foot flexes, the bones are pinching the soft tissue at the front of the ankle. No meaningful treatment options. Panic about necessity of walking. Reminded self that there was an outside possibility that student wanted to meet with me not to complain but to apologize for her role in being snapped at. Took a resentful bath.

Tuesday: Tried shoes with small heel (Reikers, 1.25″ heel). Ankles slightly better but note I am also trying to walk without bending them as much as possible. This creates radiating pain from outside of ankle to knee, plus more pain in hips and back. Meet with student who indeed does want to apologize and figure out what happened, not whine. Very good. A Stalker locates his victim in my classroom, causes disruption. I call the police. Before they arrive the Stalker comes back and I use Command Voice to order him to leave immediately. Use of Command Voice results in an adrenaline rush that cancels out most of the pain in my ankles until late that evening, when they feel like the weight of my feet is far more than they can endure and I lose a small bit of my equilibrium because they hurt so much.

Wednesday: Dress like a very feminine assassin and carry pepper spray in case the Stalker ignores the police and returns. A student says, “You look really great, and like you might hurt someone, so I like it but I’m a little scared.” I wear flat motocross style Donald J Pliner boots. Ankles do not hurt like Monday or Tuesday, but feel achy and weird. Hips, back and shoulders carry the pain torch. Cut out and make a dress for upcoming production, teach makeup class, advise students as to appearance of Stalker and what to do if sighted. Department Chair agrees to install security camera to watch shop entrance. Worry constantly about ankles. Set down and forget about pepper spray several times.

Pretty stressed about what in the hell tomorrow might bring and if ankles will go south again, etc. It’s only Wednesday, dammit.

So What If I’m Not Sure Why


The spouse and I had a dust up night before last. I’m a Leo, so my position on a fight is sorta, kinda, well……enthusiastic? I’m not afraid of marital conflict, properly managed or even a little wild if it means a problem will be solved and I can look forward to a New & Different Fight the next time. I’m up for some air clearing and maybe some lovely post-fight making out (this has Never. Ever. Happened. in 18 years of marriage, there is no post fight love fest).

On the other side is the fact that I married a Capricorn. A denying Capricorn who prefers charged, miserable silences to actually bringing the issue out in the open and poking it with sticks until it blows up. I over analyze and review and claim knowledge and he plugs his ears and covers his eyes and runs away as I run straight toward the inferno (which he claims doesn’t even exist to begin with). “My hair is on fire!” “No it’s not, it’s raining, you are so overly dramatic.”

Like probably every-damn-one else who is married, we fight about the same thing over and over again. We dress it up in different outfits, initiate it around different acts, but it always boils down to he is too quiet and disconnected and I am too intense and attached. The problem with being the Leo is that the emotional person always loses, because they are always starved for attachment, whereas the Capricorn believes they can stand solitude for as long as it takes to break the Leo; which on average is about five minutes.

I’ve been really working out over the years and I can now do Not Speaking for up to 24 hours, which is way better than the 30 seconds I used to be able to do it before caving and taking all blame for argument just please please please love me again please okay at least talk to me or I will just order ice cream for you in whatever flavor I feel like. I will never get to the Olympian level of, say, being comfortable with it; but I can manage it now without becoming a complete basket case. Sometimes I like the first few hours, when I am still suffused with righteous indignation and can keep myself warm with that. I comfort myself with thoughts of how, a few young wives and many years later, he’ll realize he truly loved only me all along, but I’ll be too busy with my bisexual cabana boy to care about his broken heart (there’s like, at least, eleventy billion Country Western songs about this very topic, amirite?). My cabana boy is Hank Azaria, just so we’re clear.

So, the typical fight script is me demanding that he talk to me about The Issue and him refusing to talk to me until I become so irrationally angry that I say something about his mother and he leaves and then sleeps on the couch most of the night. I let the dog sleep with me, wherein she takes up 2/3 of the Tempurpedic, snores and farts all night. Who’s the winner, man, who. is. the. winner? This time, though, I went all atypical because instead of shouting and following him around screaming, I started crying. Like a faucet.

In case you’re thinking that this is where everything changed for the better and he took me in his arms and we had amazing make-up sexy times and then renewed our vows, that is not what happened. What happened was that the unemotional Capricorn felt that the reason for crying was invalid. “It isn’t about the reason!!!” I wailed, slinging snot, “It’s just that I’m upset!!” Like a tennis (shit, judge? referee?) he was dedicated to an internal rule book that stated that one cannot cry unless one has a reason that is cited in the Laws Governing Marriage Between Goats and Lions as being legitimate. “You can’t judge the quality of my crying!” I cried, wiping my lip and again wiping my hand on my pants because he was not going to hand me a tissue (the Laws indicate that handing the weeping woman a tissue would invite the perception of validation of the crying, which is against the Code of Stubborn Husbands).

Thus we entered the second ring, the Fight-Within-A-Fight. “You’re crying about THE DOG ON THE COUCH?” he demands, and I snuffle through swollen lips, “IT DOESN’T MATTER WHAT TOUCHED IT OFF, IT MATTERS THAT I’M CRYING!!!!!!!” Pause. “The Dog on the COUCH?” he says again, “THE DOG ON THE COUCH IS WHY THIS IS HAPPENING?” He stands up now, spreading his arms in incredulous fashion. I am concerned that if I look his way, I will see a TV audience agreeing that I am hysterical and also grossly snotted. I say, “YOU CAN’T JUDGE PEOPLE FOR CRYING!!!” He storms off, but he is confused. Usually storming happens because my head has started spinning round and I’m vomiting up every offense ever committed in the entire marriage. But, that’s not happening, I’m just sitting there sobbing.

The Fight-Within-A-Fight generally has to be abandoned, unless one is under the age of 25 and staying up the entire night still sounds like a reasonable approach. We are older than that, so we both know that if we wait long enough, one or both of us will fall asleep, ending the evening’s events until the next day, when we will not have slept well and will be willing to accept aggressive not-speaking as a fallback position. Which is kind of what ended up happening, except that one of us got up with grotesquely swollen eyes and had to use a lot of makeup to become even remotely presentable for work.


Maybe There *are* Universal Themes


The Shrink has decided that a big theme in my life is learning to let go and relax and not be hyper-vigilant and tightly wound all the time. And I’m not saying I don’t agree with that, actually, because I can see that being tightly wound as I am is not really all that good for me. I had related to her that at my second massage, the therapist asked me if I’d done natural childbirth with my kids. I said yeah, well, mostly with the last one. She said that it might help for me to tap into the breathing one does during labor to help distance themselves from the pain. The issue being that my body really fights back during things like massages. So, anyway, I told The Shrink that I did that and it seemed to really work, and she seized on that saying, “See, Guenevere, I think this is a theme for you in the universe right now, that’s a very good example!” Gold Star for the teacher’s pet, right there. 

My massage appointment is on Fridays, but today we also had a mandatory meeting scheduled at work that would happen immediately afterward, and to which I would likely be late, something I had let the committee chair know in advance. Further compounding matters was the fact that yesterday I received a small postcard in the mail from my PCP’s office that said that the “..results of your X-ray were NORMAL.” That’s it, the end. I called and asked the (70 year old, beehived) receptionist if this was accurate since I had an MRI, not an X-ray. “Yes, Gwen, that’s right!” she said, cheerfully referring to me by a name that is not my name. I asked if might pick up a copy of the report, then, for my records? And we arranged that I would do that today. 

The MRI(s) of my hips cost me $283 out of pocket. For that money, I could have relieved my pain by buying this dress or this plus a nice dinner. Or a month’s worth of once a week massages. Instead, I apparently spent it on a postcard. Frustrated, I collected the report this morning on my way to get a massage (and naturally the report was not ready because: beehived reception). Indeed, it listed a number of things as being normal. Normal. I called the husband and wept out of frustration; with a clear MRI who, now, will believe me that my fucking hip hurts all the fucking time? I declared that I would be skipping the Mandatory Meeting today, because I was just fed up and didn’t feel like it. One last perusal of the report gleaned a sentence that said “degenerative disease in the symphysis pubis.” Huh.

After the massage I returned home, all oily and relaxed-ish, driving past work and not turning to go to the meeting, flying gaily past in order to go home. There, I looked up this degenerative disease and symphysis pubis thing and found that this happens due to instability in the joint. It can cause pain deep in the socket on the groin side. It causes too much stress on the SI joints. So, maybe there is a finding, but unfortunately my PCP is in the wind and his father, who is minding the store, is a shitty doctor to begin with who might not read an entire paragraph on a xerox copy and who certainly wouldn’t read my chart or note my diagnosis and see a connection. Nope, send her the postcard, Beehive, and let’s move on. 

I texted my coworker that I would not be at the meeting, then felt guilty for not going to the meeting. A few minutes later, the phone rang, and it was my Physical Therapist, whom I had basically left at the altar a month ago. I told her that it was coincidental that I had just picked up my MRI report this morning. I related the above issues (seems like a finding, but no physician to help me figure it out, so once again being my own doctor) and she said that she had recently taken a class about women and hip/back pain, and that she agreed this symphysis aspect would contribute to the issues and that she does not think I’m crazy and that the functional instability might not show on MRI because it can’t show that the muscles are working but working incorrectly.  She suggested, “10,000 of the stupid tummy squeezes everyday. Seriously, your muscles are all you’ve got.” She also understood and supported my decision to shift my monetary resources to massage rather than her. She said she would be happy to answer questions if  needed her expertise and if I wanted further exercises to just come by and she’d show me a few. 

So, there was a reason I skipped that meeting, and one reason was that I didn’t want to go and I’ve never missed a meeting in 4 years, and the other reason was that I really needed to take that phone call and have time to talk to her. 

Lost: Ambition


I am, typically, the sort of person who cannot stand to waste time. I don’t watch TV.  I don’t lay about, I don’t do “nothing.” Frankly, I don’t really understand what doing nothing is. If I asked you what you were thinking, and you said “Nothing” I would probably spend entirely too much time trying to figure out how that’s even possible. I have never thought Nothing in my entire life.

If I were to put on my Mr. Spock hat, it might be clear that there are several excellent reasons as to why I am not being as busy and productive as I should be. Like:

1. Xanax dependence/withdrawal. Despite my desire for it to just be over already, it takes TIME. Effing, stupid, unfocused TIME. I spit on you, Xanax, and all your benzodiazapine friends.

2. Pain. Sometimes not only is pain getting me down, I am taken up with questioning the validity of my perceptions. Am I really in pain or am I making it up? Are other people also in this much pain and are they fine and it’s just me that feels like there is a shitty small dog nipping at my ankles while his creepy pink penis drags on the sidewalk? Am I really thinking about dog wieners? Gross. Pain is distracting the same way pink dog wieners (ha ha, it corrected my spelling of wIeners)  are, it’s not something you want to look at, but it’s there anyway, and it hangs around. Change positions, there’s still a pink dog wiener. Walk around, it follows you. Tell it to go away and it humps your leg.

I’ve probably taken that as far as I can go with it. Thanks, dog wiener!

3. Eleventy Billion Effing Appointments. Not, like, cancer level appointments, but appointments. Monday morning is the Shrink at 9:00 am. Tuesday and Thursday mornings are PT, at 8:00 am.

I’m trying to get an appointment with the Medical Pot Doctor but she is slow to return calls (STONED MUCH?). I suppose that expecting a Pot Doctor in New Mexico to be quick would be like expecting not to get your tires slashed for having a pro-choice sticker on your car in Texas (actually I went to Texas proper last year with a pro-choice sticker on my Japanese car and nothing happened, I was disappointed–especially since someone at the UNIVERSITY where I work has twice now scraped my pro-choice sticker off my car).

And it’s not just the appointment itself, it’s the getting up on time part and getting dressed part and making sure you have your credit card or checkbook part and then going to the appointment and waiting for the appointment and then driving home and changing clothes (this is only after PT, I can still wear my Shrink clothes) and wishing there was more coffee then remembering after the fact that burned coffee isn’t worth it. An hour-long appointment….wait. None of my appointments are an hour. The Shrink is usually an hour and fifteen or 20 minutes, and PT is an hour and a half or better. Everything takes four hours (what 90s TV show am I quoting?)

4. The Appointment Aftermath. This is mostly PT. I usually don’t feel, like, great after PT. There is the issue of being seen in public in Not Pants and a tshirt that does not hang below my 44 year old butt. At home, given I’ve lost something like 18 lbs, I am a fan of the not pants and showing butt. But I have a reputation to uphold, and so there’s butt-showing+athletic clothing+same pants each time=dog help me if I see someone I know. Most importantly, though, is the fact that I am generally sore, or stiff, or depressed, or all of that when I get home from PT.

5. The Full Time Job of Things The Shrink or PT Have Given Me To Do. Stop what I’m doing and squeeze my “tummy muscles” for five minutes? Find time to tap on my face and speak aloud affirmations? Every day? EVERY. DAY. Do I do important things when I am avoiding doing those things? No, I engage in the adult version of a kid hiding in the closet to avoid the doctor’s office and play Match 3 games, but I keep up a running mental commentary of, “Wasting your life, huh? Great use of your time. You’ll really regret this when school starts again” to make sure I don’t even enjoy my escapism. A shrink talked to me about that once, btw. I know.

6. Spending the summer home with a 12 year old who has a mustache, a sense of entitlement a mile wide and foul language. I spend my time policing his bedroom for gross dishes/food cartons, shouting at him to turn off the XBox/TV/iPhone/Laptop (I am aware of the irony that I have given him all these things and am, ostensibly, In Charge).  It is hard to concentrate on an online class wherein one is making a hand tailored suit jacket when one must get up every five minutes to shout something at the lazy little bastard watching YouTube fail videos and farting.


Lately I find myself doing things like just listening to music. Listening to music is something I typically do while doing something else, but nowadays I sit in a chair and listen to music. That’s it. Sometimes I play the Match 3 Heroin while listening to music, but nothing is being made or created or assembled or finished. I don’t know myself anymore.

We are also regularly watching an (old) television show with the above-mentioned stinky child. The newer Battlestar Galatica, to be exact. This usually follows the Listening To Music portion of my action-packed evening. I should just move to the retirement home now. Meanwhile my tailored jacket project languishes, and I am not the type who is allowed to start a “more fun” project while a “good learning experience” project is still underway, so, well, do you like John Prine? I love his music.

I go through these periods, and they would likely be less painful if I could just allow myself to trust that I will return to busyness soon and don’t need to beat myself with the cat of nine tails the whole time I’m not doing the things I think I should be doing, but I am always afraid that this time, I’ll never go back and be Amazing again. I should go do some Emotional Freedom Technique work with that, but…….Candy Crush.

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.

Why Must It Be So Inhumane?


I went to my doctor about the weird, gnawing stomach pain thing. He ordered some blood work and an ultrasound of my stomach. A week ago, I had both of those tests done, and both labs said the results would be in my doc’s hands by Tuesday. I waited. I felt very conscious of trying to be “good” and not be the anxious, high-strung patient. I know that is probably stamped all over my chart anyway, yet still I try to preserve my humanity and avoid being pigeon-holed.

I called yesterday morning and asked the harried (and thoroughly incompetent but usually nice) receptionist if my doc had my test results. First, she couldn’t figure out who I was, because I stated my name, which is what I’ve always gone by, Genni. I know this woman. She knows me. She says, “Who?” I say, “Guenevere?” OH, she says, Gwen!

There is no good reason under the sun to try to correct this at this juncture, even though I have never gone by Gwen, some people insist on calling me Gwen and no real amount of polite reminders can help. She also sometimes calls me Genevieve, which makes more sense with Genni but no sense with Gwen.

Gwen! she says, hurriedly, I will have to call you back about that! and hangs up.

I wait. No one calls me back.

I have a fitting for a client scheduled at 8:30 am this morning. Naturally, my doc’s other (incompetent, unable to understand patient confidentiality) assistant calls then. I have to go outside because I work in a concrete building. She says, “He wants you to come in for a follow-up about your labs.”

Has no one in the medical profession ever watched TV? Do they not know the feeling a person gets when they can’t get their results over the phone and have to come in? That means you’ve got cancer, that’s what that means, and that is the way my brain works. Already, I’m starting to feel panicked and shame (because I am panicking, I am always there to kick myself when I’m down), so I take a big risk and say, firmly, “Can he see me today, then?” Oh, no, she says. I go out on a limb and say, “I am not the sort of person who can spend a weekend obsessing, so he either needs to see me or call me.” I imagine her deciding what ink to use on the “High Strung Anxious Sort” stamp for today’s entry into my chart. She tells me to hold on. Then she comes back and says that He says it’s nothing, it’s benign, he just wants to go over it with you. Also, she says, they are “only here until noon today.” I imagine them clinging to their desks, shouting that they have more patients to see as, at exactly noon, a giant vacuum cleaner hose drops from the sky and sucks them all away until Monday.

I consider but do not offer to send him a co-pay and promise to say I had an office visit so his (also incompetent, costing him huge amounts of revenue) insurance people can file a full claim if he will JUST GIVE ME THE RESULTS OVER THE PHONE.

So I have an appointment on Monday. Also, I feel like crying, and like I am stupid and worthless, and like now there will be no end to the anxiety I have already had about this all week. For two days this week I was sure that I looked maybe a little sallow. Maybe my eyes were yellow? Maybe my liver is really damaged from all that shameful, bad alcohol I drink and I will die.

My inner Vulcan told me that if I am “not sure’ if I look sallow, then I do not look sallow, see also: very healthy diet, EDS, IBS, POTS, alcohol the ONLY bad habit, please shut up.

For another two days I decided my thyroid was too big looking and maybe I had a goiter or would have to have it removed or had cancer and would get really fat and lazy on thyroid meds.

The Vulcan asked me to please find something constructive to do with my time and to stop babbling. Also, stop looking in the mirror and stop asking Dr. Google stupid questions.

The literature about EDS often refers to the need for counseling to help sufferers deal with the mistreatment they have often received at the hands of medical providers. It is a known fact that we get the short end of the stick and are typically misunderstood. I have a doc who understands, but he is actually just a nurse practitioner and he is surrounded, like Sleeping Beauty, by thoughtless, incompetent, harried thorns who thwart me at every turn. At every turn, I walk away from interactions feeling like I’ve been given a wedgie and a dunce hat. I feel stupid and afraid.

It’s the most familiar dance I know, and I am a permanent guest at the party.