Category Archives: Chronic Pain

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. 

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.

Hanging Out With My Pals Anxiety and Panic

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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.

On Limitations

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I will have logged something like 50 hours by around 9:30 tonight, when I will be done seeing the show that opens tomorrow for the fourth–and not final–time this week. It’s not that it is the worst show ever or anything (I am looking at you, West Highland Way), but I think the only thing I watch more than four or five times is Firefly. I am exceptionally tired, and tonight’s viewing is an extra. Normally I don’t attend the preview performance, which is a sort of dress rehearsal with an audience, but we are apparently trying this idea of talk backs in conjunction with preview and our director (you may remember the Retarded Child Emperor) wants me to attend. I find this amusing, and hope that at some point his blood suddenly runs cold when he realizes that he has now taken the risk that I will mention, in public, to an audience, that he fired me from the creative team during the production process.

Imagining revenge keeps me alive, it does.

Prior to coming home, I went with a work study to pull from our stock for the show I am designing this semester, Frankenstein. Stock, for us, is like a nearly 2000 square foot closet full of amazing clothes, hats, accessories and more. It’s a candy store for kids like me, and it’s all, sort of, MINE. It’s also gotten increasingly hard. Five years ago I was a gazelle leaping among racks and boxes, climbing stepladders and hauling things about. Shoving clothes to the side to look at a suit, hefting several items at once up and down, carrying boxes and armloads with no worries. Now, everything I hoist is a choice that is painful and tiring then, and painful and tiring later, too. I keep a 20 year old stationed nearby, but let’s face it, I can’t stick my arms into theirs and make them move through it the way I want. I can have her carry everything I’ve chosen to my car, but I’m the one who spots the right suit and pulls it off the rack to measure it and put it on the rack of things I wish to use.

My shoulders, wrists and ankles will wish to converse with me about this activity for hours tonight. It’s something I used to love doing–the thrill of the chase, looking at amazing pieces of clothing, re-acquainting myself with favorites that we own and that we’ve built. Now it’s an endurance test, and an exercise in helplessness. All of that would probably be okay, if I were home for good now, instead of planning dinner and waiting to go to the show. It might even be okay if I were going to the show, but not going tomorrow, for opening night. But, right now, I hold two tickets to a sold out show, and I always go to opening night.

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In other news, I had the last visit with the Shrink on Monday. It was suitably awkward. At the end I stood up to go and she followed me as she does and then she asked if we might hug, which we did, and then I inwardly berated myself for failing to hug in the first place and realized I had already broken the agreement that I was going to carry out of that session a new dedication to not making myself feel stupid. I’m the dog who eats the obedience school certificate of completion and then pees on the rug.

I have made an appointment with the new shrink, but find myself resistant. I am loathe to start all over again. I don’t care for her intake form that is very focused on how much I drink and do I ever think I should stop and how much, really, do I drink? Too much, madam, that is the answer. Who doesn’t question even decisions they are (mostly) okay with? Get out of my head already. I feel like her form is seeking problems and I am not seeking therapy because I drink too much or something like that, I am seeking outside support as I deal with a permanent, un-treatable, degenerative, chronic-pain condition. It’s going to be what it’s going to be, I just need to dump some of it on someone-not-my-spouse.

I wish to be greeted as equal, is what it comes down to.

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My PCP had me get x-rays of my hands, neck and shoulder last week. On Monday his mother (also the office manager and yes, you do see where this is going, don’t you?) called to give me my results. She gave them to my voicemail, and said that everything was “fine.” “It’s fine, Gwen, just fine. Let’s see (crinkling paper sounds) your neck has a little bit of degenerative process and your hands are fine except for some degenerative process–that’s just arthritis, hon–and your shoulder is normal.”

Um.

Do you know how many “Not Okay” wands I break in a single week? I have to hit so many people so many times, I go through them like water. Also, it’s not long enough to reach all the way through the voicemail and the cell tower to find his mother with her diet Coke and smack her nose. I texted him the next day about the veritable not okayness and he said he’s called me.

No, of course he hasn’t. And tonight I have to go to the show, with my aching (yet normal!) shoulder and my aching (but mostly okay!) hands, and my wrists which we’ve never looked at and my ankles that look like I retired from a lucrative pro-football career. Where, after watching a show wherein I spend a huge amount of time feeling bad for the rabbit, I need to try not to tell the audience that the retarded child emperor (with a beard like a Monty Python lumberjack) fired me from his stupid project.

Not Particularly Original Thought

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Plenty of people have written about the oddities of social niceties; particularly the expectations bundled into the question, “How are you doing”/”How are you?” as greeting. We all know that 90% of the time, this is not a question that expects (or desires) an honest answer. The prescribed response is, “Fine! How are you?” To which the answer is also supposed to be, “Fine!” Then we go along our merry way, where everyone is fine and no one is burdened with too much information about one another.

Having spent much of my life emotionally chained to a person who is borderline and a compulsive attention-seeker, I learned to really dread that question. That person’s answers were often so packed with TMI one felt they might have stepped in something squishy and hard to remove. As a result, I developed a severe allergy to any and all attention-seeking. I became the sort of uptight white lady who would be aghast (and a tetch judgmental–ha, okay, far more than a mere tetch) if someone were to suddenly launch into an inappropriately intimate response to the question.

An example: I recently ran into an acquaintance at a local shop. I asked, “How are you?” and swear to dog, within minutes I was regaled with information about a pregnancy scare, a broken condom, and someone’s spasmodic vagina. Honestly, most of me immediately ran away, leaving only a shell to nod and say, “Oh…” and “Wow” in a faint voice. It’s a double-edged sword, in that having suffered much judgement in my life, I endeavor to be a person that others feel they can talk to while at the same time often being the listener and not the speaker in those exchanges. They can tell me all that, and I can leave them feeling like it was okay, and they know that I am doing “fine.”

So, while I became the X-man of Showing Not My Hand, I also ended up being pretty damn isolated and lonely. I think that’s a big part of why I find blogging so enchanting–I get to talk about myself, and for much of my life, I’ve not allowed myself to do that. It also results in a sort of boiling over, though—when I start to resent how much I am expected to not only care about others but to also always be FINE, I may lose my composure in a big way, becoming the vulnerable mess of raw nerves and anger that I want no one to see. So I walk this line, fearing that I might accidentally share and be punished, while also brimming with unspoken reality (one of the traps that my borderline often set was to furiously attack anyone for sharing anything that might distract the audience from her, the center of the universe. That’s actually why you can’t google this blog–even as cloaked as my information is, the idea that I speak of my own experience would trigger that person to pour gasoline all over this and set it ablaze. It’s happened before.).

Having this wild and woolly collagen-based disorder that affects everything in my body has added a new wrinkle to this set-up. I’m not sure that I will ever, really, feel “fine” again. Yet, I do not want to be that person that spews a litany of problems every time a socially prescribed inquiry is made. I’ve come a long way, in that I am no longer completely locked down and committed to always being FINE–I have found some people who do want realistic answers and respond lovingly when I say, “I’m not feeling well” or “I’m having a hard time coping today” and such. Yet, even in intimate relationships, I fear that a daily, honest answer will wear away at those closest to me.

I tend to go through a sort of triage when my spouse asks me, “How are you feeling today?” Like this morning when he asked that. I could list everything: “Well, I slept all night last night so that was great but my carpal tunnel is flaring up and my hands hurt, and my hip wakes me up briefly at night and my shoulder is fucked up and I think it’s starting to cause nerve damage, and I am really dreading first dress tonight and fantasizing about quitting my job and becoming housebound.” On the other end of the measuring stick would be, “Fine.” So to be in the middle, I try to pick maybe two things. “I slept well, finally, but I wish we didn’t have first dress tonight.” What’s most pressing in my load of troubles right this minute? I worry he’ll get compassion fatigue eventually and resent the fact that I can’t just be “fine” anymore.

The key to some of that is having more than one person to confide in. I cannot, and should not, make him the only bearer of my ills. I have a Shrink for that (although tomorrow is our last visit as she’s retiring and I haven’t set up a new one yet). I have a handful of close friends that I feel pretty comfortable with and that I think won’t start to see me as just a set of illnesses and not a person. I have my mother.  I have the message boards at the Ehler’s Danlos Foundation’s group on Inspire.com. And, I have this blog. Everyone’s life, ultimately, is lived alone. This both terrifies and comforts me and I try to find my way through the social swamp and determine when the answer should just be “fine” and when it can be in the middle and when the rare occasion that I can set the whole mess in front of someone presents itself.

Getting an A+

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If aging is something one can study for, I am going to totally ace it when I get to being elderly. I am already getting to practice so many aspects of becoming frail, I may not even notice a difference when I’m finally, formally, an old lady. (I promise, though, solemnly, that I will not wear a purple hat–that is some silly bullshit, friends).

It’s not uncommon, for example, to have to regularly monitor one’s blood pressure and heart rate in one’s later years, but that won’t be any kind of stumbling block for me, as I do that at least once a day already. I am acutely aware of my heart’s various flutterings and hiccups, and take a month’s history of it to my cardiologist at each visit.

Likewise, the need to document one’s medical issues is an elderly treat I have already gotten to partake of–I will soon be one of those patients with a clear Ziploc full of pill bottles and scribbled notes and a notebook full of diagnostic letters and test results. Remember the halcyon days of youth when the only medication you were on was maybe birth control or allergy meds? No more, now there are beta blockers and handfuls of supplements. I have arrived, old age, I am already amongst your people.

I remember that my Grama would often bemoan not being able to eat whatever she wanted anymore, as many things seemed to upset her system. Given that last night and two nights ago I had big meals from carry-out restaurants and each night awoke at 2:00 am with gnawing stomach that lasted until 4:30/5:30 am, it seems I will not have to face that hurdle in my seventies. It will be old hat to say, “Oh, I need to watch my portions and be careful not to overeat because it makes my stomach hurt at night, dearie–you can have the rest of my smoked rib plate/reuben sandwich for me”. And, “I need to eat dinner earlier rather than later, or I won’t be able to sleep.” I should just start working Jeopardy into my life now; I can watch it at 4:00 while I eat a small, bland dinner.

Old people often feel stiff and achy in the morning–gone are the days of springing out of bed and leaping into whatever tasks or adventures were ahead. Each morning as I stagger to the shower with my hand on my lower back, wincing as my ankles and wrists and shoulders speak up with complaints of their own, I’m grateful that I will not have to go through the disappointment of feeling this way when I am old. I will not wake up one morning to find my youthful spring-of-step mysteriously compromised, I will feel the same way I have felt since I was a 46 year old babe with dewy skin and innocent expectations.

Older people spend a lot more time at the doctor’s office, too. Yesterday, waiting to be called for x-rays of my hands, neck and right shoulder, I overheard this conversation:

Sweet old couple waiting nearby, are approached by a receptionist:

Receptionist: Mrs Smith, have you visited Africa in the last 21 days?

Sweet old lady: What? What did you say?

Receptionist (louder, but not slower): HAVE YOU VISITED AFRICA IN THE LAST 21 DAYS?

SOL: WHERE? WHAT?

Receptionist: AFRICA!

SOL: Africa? (looks to husband) No…..I don’t think so. Why?

Receptionist (still not slowing down): It’s because of the EBOLA.

SOL: What?

Receptionist: I’m just checking “no”, thank you!

SOL: What’s your name?

Receptionist: Adawnna.

SOL: What?

Receptionist: Adawnna. (leaves)

SOL (to her husband): WHAT DID SHE WANT? WHY DID SHE CHECK SOMETHING OFF?

Husband (rising painfully slowly to his feet, goes up to receptionist’s desk, the same conversation is had, and he returns): -chuckles- They thought we might have gone to AFRICA.

SOL: Where?

Husband: AFRICA. WHERE YOU CATCH THE EBOLA.

SOL: She said I have the Ebola?

Husband: No, no, she said you haven’t been to AFRICA.

SOL: Well that’s true, who would go there? They have the Ebola.

Then they laughed and laughed.

See? I haven’t been to Africa either, so I’m in the club.

Old people also have trouble getting in and out of the car. I can no longer manage to control the swing of the truck door and get in at the same time, so I go wait in the driveway while my husband backs out, and then I get in. The reverse happens when we get home, and have to sort of let the momentum of the door haul me out in a controlled slithering operation. I have similar struggles with heavy doors, and hover around them waiting for someone to open them for me whenever possible. I also stick my foot out so that if someone crashes through it maybe they won’t break my wrist and knock me down–us old folks know there’s a broken hip lurking around every corner.

On the bright side, I look really good for being 80–I mean, I look half that age, really. I’ll be able to get lots of dates at the retirement home, I’m sure.

Of Beta Blockers, Side Effects and Unreturned Calls

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The cardiologist kind of wowed me with this, “Of course I know about EDS, a cardiologist has to.” Also, where she said, “This is not in your head, you have a collagen based disorder and this is how your disorder affects your body.” She first said I needed to see an Electrophysiologist. Then she said that well, we’d try a beta blocker first. She asked me to stay on it for one week, even if I thought it made me really tired–which is the expected result when adjusting to beta blockers. The other weird thing was that she noted my blood pressure was pretty high, and even as I showed her the last month’s worth of daily readings, it was never particularly low–something it has always been in the past. She checked my ankles for swelling and found none.

The next day I hid from work and stayed home, ostensibly to rest. Instead the busy, busy monkey that is my brain started wondering, was she checking for heart failure? Oh, and, OH OH OH (my brain gets really excited about freaking me out), what about that ten pounds you’ve gained so mysteriously in your belly? You’ve never put weight on your belly. Let’s ask Dr Google if mysterious belly weight gain is a sign of heart failure! So we did……and it is……and my brain celebrated this exciting possibility all damn day long. “Remember how you’ve felt really tired? Yeah, yeah, fatigue is a symptom.So’s high blood pressure!” All day long.

The cardiologist had put me on Metoprolol ER, the lowest possible dose, which is 25 milligrams once a day, taken in the morning. Day one, I noticed that I was nauseated pretty much all day, and found it curious that my urine seemed dark (urine, I said, did you have a multivitamin when I wasn’t looking?). The next day I got on the scale and was five pounds lighter than I had been the day before (my brain scribbles this down, “see? it’s water weight, you’re in heart failure.”). I was, also, completely uninterested in food and noticed that the wave of nausea seemed kind of regular, like they were happening each time the drug released throughout the day.  Day three I was still the same weight as day two, meaning I apparently didn’t imagine that new number. Also, I was nauseated all day long, but I could find windows where it ebbed after a release.

Now, if you’re saying to yourself that obviously I should have called the doctor rather than googling side effects and such, allow me to politely suggest you shut the front door, because I did. I called yesterday around 10:30 am. I reported that I had a question about a medication and that I was experiencing nausea. You know as well as I do there’s no reason to give the receptionist a list of things, they are there to send the message. She said that the doctor was in surgery all day but the message would go to the medical assistants. (Then I got a shitty email from work and my blood pressure went up to 145/110, which I think if I had a fancier monitor it might have called 911 for me. But I don’t so I closed the work email and avoided it the rest of the day and the numbers went back to the new normal of not low).

Of course no one called me back, right?

Right.

We went out to dinner and I was hella nauseated all the way there, then it cleared for a second and I ate, but about a third less than normal. On the way home I started to have intense stomach and chest pain. This lasted about an hour, then resolved around the time I was thinking okay, if you have to ask yourself if you are willing to sit in the ER with all the people who think they’re at the daycare for their neglected children, then you do not need to go to the ER. Got it? Oh look, my stomach stopped hurting as much, cool.

I suspect there is zero chance I will hear from the doctor’s office before Tuesday, and one cannot just go off beta blockers. You can have a heart attack if you don’t taper down very slowly, so I’d kind of like some direction from the expert before I do anything differently. But, how good does another few days of nausea sound? Not so good. No me gusta, honestly.

My Job and My Heart

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This has been a rather unbelievable week, and I promise I am trying to condense as much as possible. Theater is interesting business, especially since this job is the only experience I’ve ever had with theater. I sometimes feel like an anthropologist.

There is a lot of expectation that a director owns the creatives (“creatives” being the set, lighting, costume and makeup designers). A director has some tacit permission to be a complete asshole and demand, as my husband has characterized this week’s event, “the the stage go up in the air and spin around and also laser lights and the audience should go up and spin around too because that’s MY VISION.” Creatives are then supposed to kill themselves trying to make this dream come true, and if they do balk, traditionally there’s a lot of shouting and name-calling. Things are a bit difficult when it comes to academic theater, as we are not just doing theater, we’re also teaching, meeting with various committees, etc.

We have this tenure-track faculty member; wait, let’s just unpack that briefly–so in academic theater, a director who is an asshole can also eventually get a forever job, which translates to being a blessed and protected asshole.

Okay, so this director, whom we will refer to as The Retarded Child Emperor (a term Bill Mahr used to describe George Dubya Bush), is deeply insecure and very difficult to work with. He’s mean, he’s manipulative, he’s inappropriate, he’s dishonest. I have prided myself as being one who has worked with him several times and very successfully. I am one of the very few who has managed this. I was proud of this fact, but I also knew that it wouldn’t last forever, because someone who will say hateful things to you about other people will also eventually say hateful things about you to other people.

We have a new Department Chair, who is friends with The Emperor, and that was cause for concern. The Emperor is desperate to create the illusion that the Chair has his ear on all things, and that he is the Chair’s right hand man. So that’s the set up. Here’s how it played out.

The Emperor is directing our first show. Last semester he and I, in passing, had this conversation:

TRCE: Hey, I want to do this makeup thing with Gamma Rays (shortened play title) where a character goes from old to young to old again. Do you have any students who are really good at aging makeup.

Me: Are you kidding me? They are terrible at aging makeup, but that’s an interesting idea, I’ll keep my eye out.

Fast-forward to this semester:

I see a rehearsal report that shows that the actor will have 11 minutes to go from old to high school aged, and then 4 minutes to go back to old. Other factors I didn’t know: the actor is very dark complected (and black don’t crack because the epidermal layer is thicker the darker your skin, so wrinkling is far less prevalent in that population), the show will be performed without an intermission, and the audience will be seated on the stage. I email The Emperor and say, very nicely, that given the time frame, I think we won’t be able to re-make her up at the end and we’d need to rely on other visual clues like wig, glasses, cane, etc. The Emperor replies only that he wishes to meet about it.

We meet. He tells me that we’ll have 11 minutes, not 4, to re-age her. I point out reservations about this. He says, “I don’t want the usual college garbage we get here.” I wonder what he smokes to make him think that insulting your creative (who has done stellar work for you in the past) is a good way to proceed. I again assert my misgivings about this, and also ask for further clarification. He wants the 20 year old actor to look like she is 100 years old. He wants her to look like she’s 17, and an entirely different person, for the other character. Then he wants her back to 100 years old. In 11 minutes. He will not accept my concerns and wants it his way, period.

I leave the meeting feeling set up. At the same time this is happening, I am having increasing heart problems. My blood pressure, traditionally low, is too high. My pulse is insane irregular. I am waking up at 1:00 am, pounding heart, thinking I might die of a heart attack and worrying about this stupid makeup gimmick. Monday morning I send him a very polite, very clear email about why this is not possible. I don’t say, “I won’t do it, it’s stupid,” I say, “I can’t do this. Here are the reasons why” I copy the new Chair into that email. My blood pressure is higher than it’s ever been and my pulse is 118 and wild.

The world is consumed by a ball of fire. The Chair emails me that he is meeting with The Emperor. Then he emails that The Emperor will handle the makeup effect himself. The Emperor comes down to my office to ask if I am still doing the other makeup for the show. I say yes, of course, also, no hard feelings, I felt it was best to give him my honest assessment. He says everything is fine, of course, and then snidely slips in that “The Chair and I looked at your concerns but we don’t think it’s such a big deal, we’re talking to other people about it.” I am displeased to have my professional opinion treated dismissively.

The next day I get an email from The Chair suggesting that creatives should not “abandon projects” and should “respect directors” and “embrace an exciting challenge, not simply dismiss it.” My pulse rockets to 125 and I feel like I’m dying. I send The Chair a howler of epic proportions. My pulse never goes down all day as we exchange emails wherein he says he is shocked that I would send such an email to him and I respond that I am shocked that he would characterize my actions so negatively and he says no, that was a positive email and I say “abandonment” is not positive and he says maybe we should not do this via email and I say fine. We set up a meeting for Thursday because I am to be out of the office Wednesday. Right before I leave to go to the cardiologist, he sends me an email saying that he and The Emperor have met, and they feel I should be removed from the creative team altogether.

The cardiologist gets a splendid picture of what is happening to my heart. “Can you feel all the extra beats?” she asks me. She started me on a different beta blocker (Lopressor ER) and told me to come back in two months, or sooner if I felt I needed to. She is EDS-savvy, and I feel like finally, someone is going to take my heart seriously.

The next day I email the chair, detail how stressed-out I am, tell him I am starting heart medication and will take sick leave. Then I chose to worry that perhaps I am in early heart failure, which can be another post entirely.

When The Chair and I met yesterday, he was FURIOUS with me, and this is a guy who doesn’t really do negative emotions. I find myself in the position of being liberated from a yoke I’ve carried my whole life, as I realize that I don’t give a flying fuck that he’s angry. I am willing to be fired over this, and I am right. Through the course of our meeting I show him all the email evidence of my attempts to work with The Emperor. He acknowledges that he was only viewing this through The Emperor’s side, and did not have all the facts. I finally make him understand that The Emperor has triangulated this, and neatly manipulated The Chair into being his instrument to bully and retaliate against me. The Chairs mentions that now, well, he’s kind of pissed of at The Emperor.

I shake like a leaf during this meeting because my disobedient heart is not good with even minor stress right now. I point out that I am physically ill due in part to this situation. He asks if I would be willing to come back to the team, and I tell him I don’t know.

He later met with The Emperor, and I suspect that The Emperor realized that he’s made a serious mistake. The Chair then asked that we meet together (he, I, The Emperor). When we do, The Emperor opens with a groveling apology, and even gets teary (he’s an actor, though…). He begs me to return to the project. I say that I am unsure, is he willing to compromise? Suddenly he becomes the personification of Flexibility. The Chair even weighs in with further compromises he thinks The Emperor needs to make. The Emperor rolls on his back like an ashamed dog. At the end, where I would normally feel badly for the person apologizing and want them to feel better, I instead say, “You need to know that your behavior over this was really hurtful to me. I have never given you less than what was possible, and you went into this treating me like I had. I don’t understand why you took that approach with me, and I don’t want it to happen again.” There was further groveling. He made the excuse that an interaction with my co-worker fueled his perception and I stopped him. “I’m not my coworker. You know how much I try to make clear that while my co-worker likes to claim all opinions held by her are held by me, that’s not the case.”  He understands that now, it appears.

So now I have a puzzle to solve, but I also have four days off before I have to really tackle it. And I have to deal with the fact that the beta blocker makes me nauseated all day long and I’ve already lost five pounds since, uh, Wednesday.

If I Got Paid For This

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By “This” I mean the amount of time I devote to handling the administrative aspects of being a chronically ill patient. Take, for example, the number of hours it has taken to try to see this Rheumatologist in Albuquerque. I’ve spent at least 4 hours total on the phone either with the doctor’s office, my insurance, and my PCP and his office. I’ve stepped away from my office to answer several calls as related to this issue and my attempts to find someone who will see and maybe treat me. That’s roughly the same amount of hours I pay my studio assistant per week to help me streamline my studio and art processes.

It also turns out that most of that effort was entirely unnecessary, as only this had to happen:

Insurance “Patient Advocate” (try not to choke while laughing at that title): Do you live in the four corners area?

Me: No. I live in a county outside that area.

Insurance PA: Then because you have less access to care, this doctor is in network for you.

Me: So we didn’t need to file with the prior authorization side and send tons of clinical information to you and get denied and re-file and wait until it was almost too late to book a hotel and find a house/child sitter?

Insurance PA: Er, right.

Me:.

The real kicker is that they asked me those very same questions during the very first phone call over a month ago. I guess geography changes? OH, wait, it doesn’t. Huh.

Now I must spend time arranging a sitter and introducing her to the child/dog/cat. I have to assemble an entire notebook of medical documentation, test results, clinical findings, etc to take with me. I figure if I got paid for all that I’d have made a couple hundred bucks already, you know?

Also, there’s the amount of time and energy it costs me to arrange to attend an appointment. Last Thursday I was scheduled to see a cardiologist at 3:20 in the afternoon. Before I left the house I had to locate my most current echo and blood test results. I had to arrange with my supervisor and my staff to leave early, and make sure that I had planned activities for my class that my senior Work Study could supervise. Then, the doctor’s office called that morning and cancelled the appointment due to the doctor having “an emergency.” I will lather, rinse and repeat the above on Tuesday, when I have an appointment with her at 4:00 pm.

There’s also the amount of time I spend researching my condition and co-morbidities and random symptoms since right now, I don’t have a team to help me manage my care. Dear Dr Google, why do you think I woke up at 12:45 this morning with gnawing stomach again? What should I do about that? What if I feel like it will take one more thing to break this camel’s back in 17 pieces?

If I did get paid for all this work, I think it would work out that I wouldn’t have to pay my insurance for another thing, since I’m mostly doing their jobs for them. It’s as if a patient becomes their own full time job if they want to get even barely adequate care. Instead, I do all the work of the case management aspect of my health care, plus my own full time job–and all that while suffering daily pain and a myriad of unexplained or untreated symptoms and conditions. That seems fair, right?