Monthly Archives: October 2015

Of Various and Sundry Tragedies

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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.  

Work: 

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. 

Life: 

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. 

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Artful Blasphemy

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Today I am launching my latest project, Artful Blasphemy, a tumblr dedicated to breaking the fashion rules for those of us over 40 (and anyone else who dislikes being in a box). Please visit and follow for Outfit Of The Day, Art, Process and much, much more.

This blog remains dedicated to mostly whining about EDS, Chronic Pain and the like, but the new one will let me showcase the positive stuff.

Circular Logic of Tail Chasing

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At some point, perhaps, I will learn. I will finally, for the last time, put myself and my finances through the process of having something investigated only to emerge from that process poorer, more frustrated, and with the answer I already had: I have Ehler’s Danlos Syndrome, and I will never feel “good” again in my life.

I spent $139.00 clams to get the MRI of my shoulder last week. That’s a nice pair of boots, or almost halfway to a pair of BedStu boots. (I KNOW RIGHT?) I had to go in to work late, and the tech was running late, and someone else there wanted to talk to me about my stalker sibling’s made up medical problems (because they are WAY more interesting than real problems). The tech assured me the doctor’s office would have the results the next day.

The short version of how obtaining the results went can be summed up thusly: PCP’s office decided not to answer their phones all day the next day, PCP was out of town, I got the results Friday via a text of the report he got faxed to him. There was a lot of anger, frustration, tears and cursing during this process.

The results? AC arthrosis, which is the same as arthritis except the word arthritis indicates inflammatory change and arthrosis is degenerative change without an inflammatory process. Just in case you wanted to know that. Here are other fun facts about this:

  1. PCP doesn’t think this explains the pain.
  2. I think it might.
  3. There’s nothing, not a goddamned thing, to be done about it.
  4. PCP wants to now go through the whole process again, but with my neck.
  5. But there’d be nothing to be done about it.
  6. And it would cost me the other half of those boots up there.

When will I learn? This time? This is how it is always going to work:

  1. Something hurts.
  2. It hurts all the goddamned time.
  3. I have to modify my life.
  4. IT DOESN’T MATTER IN THE SLIGHTEST THAT WE FIND OUT EXACTLY WHY.
  5. The answer is always this: I have EDS, and I will never feel good again. The end.

Oh my, yes, that is a negative outlook, I agree. But it’s also true. The other thing is, why do I feel like it’s more legit if I know the exact why? Part of me was wanting a torn rotator cuff even though that would be career-ending. OH. That’s why–I am looking for what I feel will be a legit enough reason to leave my job. Thing is, I already have a legit reason, because I have EDS, but I want an iron-clad out, not a soft, hard-to-explain, I-don’t-look-sick reason. I want something that is so clear that I don’t even have to admit to myself that I might be leaving simply because I work with one of the most impossible people in the world and I am starting to give up on the idea that I can win,and also, I am tired of this person taking so much of my energy when right now, I have trouble carrying my own belongings into work each day.

I can hardly carry my own shit, and once I manage to get inside with it all and put it down, I spend the rest of my day with a micro-managing tyrant with the tact and professionalism of an angry rhinoceros. I expend HUGE amounts of energy trying to buffer this person, in whose hands my leash was placed (after FIVE YEARS of working to get it out of their grip) by the new Department Chair, who has no idea what sort of monster he created. The rest of us do, because we all admired how hard it was to get myself off the leash in the first place and that the monster had finally been shrunk down just a bit.

We talked a lot, the spouse and I, about whether or not I can or should keep working. Let’s face it; this person is not worth what I am spending on them, and, despite the money and time and Dr Googling, my shoulder still hurts. And it’s not going to get better, any more than my hands, or my back, or my neck, or my ankles, or my wrists. Will I choose to remain trapped in the rough waters of this medical system? Or will I decide to liberate myself from it, from angry rhinos, and from feeling like I should hang on just a little longer? I don’t know yet, but the trend is going in the Give Up direction.

Why the Slow Start?

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Eating is something that obviously over the course of human history, can really easily get screwed up. Nearly everything affects the digestive system–nearly every drug you can take has gastrointestinal side effects on the warning label. Your emotions can both affect the gut and are also greatly affected by it–the majority of one’s serotonin, for example, is produced in the gut. Our obsession with our digestive tracts is obvious to anyone who watches television or wanders the extensive aisles of related products in any store.

I grew up with an iron-clad stomach. I could eat absolutely anything, and I did. There was a period of serious stomach trouble when I was 7, but my mother finally realized that it was due to having been on antibiotics the better part of a year and started me on brewer’s yeast and plain yogurt (appalling, both, but it worked). I considered it a point of pride that I went years and years and years without ever vomiting. There’s a Seinfeld episode on that very subject, where Jerry’s streak is ended by the dreaded nemesis of the black and white cookie.

I felt his pain.

I’ve had two nights this week wherein I didn’t wake up at 3:00 am and lay there, heart pounding, until 4:30 or 5:00 am. I’ve been very careful about not eating dinner too late and for the most part Gnawing Stomach has not been part of the scenario. I suspect I am breaking through the Propanolol, and considered asking the cardiologist if there is an extended release option for night time. But, then, I started having heartburn.

Why yes, Propanolol can cause that. Are any of you familiar with the syndrome whereby you realize something (Propanolol is relaxing my esophagus too much and causing some difficulty swallowing and acid reflux, for example) and yet you choose to deny that this is happening because you’ve checked with all of your internal registers and seen that the problem count is already too high and you just don’t have room for another one right now, thanks very much all the same? I am sure I am not alone.

The complex intersection of that with emotional stress is, I suppose, why I threw up until after midnight last night. I saw the new Shrink yesterday, and a lot of what we talked about had to do with what that person with the personality disorder is doing to continue to try to get my attention. I mentioned that it was my perception that as I ignore all attempts at contact and we get closer to the holidays, this person is going to find themselves in a greater and greater state of agitation and will escalate their behavior. The last attempt was about a week before my birthday in late July, messages on my office phone that I didn’t find until I went back to work. My cellphone already blocks this person and her spouse, as does FB, and my email address is also unknown to her. The new Shrink was very supportive of my position about not letting this person into my life again, and also said, “I keep seeing this image of you on a rickety wooden bridge with alligators below you.”

I will be opening my psychic business soon, if any of you are interested, because I walked into my house from seeing the new Shrink to find that this person is now using Etsy to message me. Turns out you can’t block someone on Etsy. The holidays were referenced, which suggests that I am entirely right about how things will go over the next few months. The new Shrink better put her boots on, as things are going to get pretty deep pretty quick around these parts. Like a fool, I ended my day with chile cheese fries and guacamole salad, and then I went to bed with a glass of wine….

….with what felt like a ticking time bomb in my gut, with fire racing up my throat and a sense that if I lay down correctly it would all just flow out like lava. Or….not. But it was an ugly feeling, kids. Like Jerry Seinfeld, I am not a puker. I know people who are, for whom this is sort of effortless, but I am not at all in that club. But there was no way I was going to survive the night with my ill-considered meal in my belly.

Around 1:00 am, as I lay with the heating pad on my stomach to soothe the turmoil of puking for hours, I realized that because my life is magical and filled with splendid coincidences, my shoulder was very angry about the festivities. Who the fuck hurts their shoulder puking? Me, that’s who. People with EDS, that’s who. So then there was ice for the shoulder and heating pad for the gut and restless sleep wherein I dreamed I was being bitten multiple times by mosquitoes (Oh, Psyche, you borrower of trouble).

The world in all it’s internal and external splendor meets in the gut, with all its alchemical glory. It does not, however, result in gold.