Tag Archives: advocating for myself

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.

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.

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.

I Think I’m Maybe 86 Rather Than 46

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Also: 46? Geez, I was getting along just fine with 45 although it was an extended period of adjustment. Let’s slow the roll here, aging.

Ongoing Medical horse-shittery:

The PCP is sending lots of info to the insurance and they are not responding except, I think, that they called me at work yesterday. What’s problematic about that is I work in a very fancy schmancy concrete building and cell phone calls mean I have to shout into the phone “JUST A MINUTE I HAVE TO WALK OUTSIDE” and then run outside to find they have hung up. Also I have a new phone and my voicemail isn’t set up. And it may never be so, that’s one of those chores I loathe.

In the meantime, the PCP and I agreed that he would call the local rheumy and smooth things over so that I could see him as a fall back for when the insurance refuses to let me see the one in Albuquerque. Except, the local rheumy regrets that he cannot help me, so he declined the pleasure of a little catching up. Instead, he and the PCP, after having a mutually supportive hand-wringing session about how hard it is to treat me, decided I should see a Physiatrist. WTF is a Physiatrist, you ask? So did I.

A Physiatrist is sort of the MD who offers everything short of orthopedic surgery. It appears that their understanding of EDS and practices vary wildly, so there’s no telling if this guy can help or not. My PCP called him and they agreed that “EDS cases are difficult” and that the Physiatrist would like to help me with my “misconceptions” about steroid injections. Um. I am well-informed about steroid injections for EDS patients, so maybe I can help him with *his* miconceptions? Except: I don’t really have time to pay you AND educate you about my care. Also, there’s something like a 3 month waiting list to see him. OH, and, he works with the tiny pocket India man that I have already fired as a physical therapist. So, yeah.

At the same time I have ordered the Kevin Muldowney book. The problem being that it is intended for the Physical Therapist, not the patient, and it has to be a PT who is a manual adjustment-focused therapist, not an exercise-focused therapist. The tiny pocket India man is an exercise sort and utterly rigid about his program from the get-go. I mean, he does x, y, z, and isn’t even interested in whether or not you are getting better.

Back-To-Work and Collision of Life Update:

I allude a lot to a problem person in my life, and I’m going to allude again and say this: Walking into my office the first day back at work to find manipulative voicemail messages on my office phone from someone whose last telephone message threatened me should I ever contact them again (even though there had been zero contact from me in over a year) really sucked. I’m not sure why this person didn’t get the message when they spent 15 minutes ringing my doorbell and hammering on the door earlier this summer and I a) didn’t answer the door and b) called the police (who just missed this person, but rumor has it that she knows that’s what I did) but, GO AWAY, PERSON. I am pretty sure I don’t have enough for an order of protection, but, still. I would like one.

Work is hard, already, and my body is not the wondrous instrument I would like. I cannot carry anything on either shoulder, and pushing that weight to my elbows is going to backfire at any moment. My back and hips hurt all the time. When I get home from work, the muscles in my shoulders/upper back seem to sort of crawl up toward my neck and clutch me in a very painful way. I’m chilling on ice (ha ha) and then sleeping on a heating pad to try to settle all that down. The results are minimal.

The emotional soup at work is one of uncertainty, resistance and naked agendas as we have a new department chair who is ready to make lots of changes. Our former interim chair was so bad that we devolved into tiny clusters of people vomiting anger and vitriol in corners, attacking each other and gossiping like a bunch of hens on meth. Uncertainty does not bring out the best in most people, I have found. My goal is to navigate this shit soup like a graceful sailing vessel that moves easily through, and above, the fray.

In Summation:

I have a condition that few people are even willing to understand or support.

Someone needs to stop with their obsessive stalking.

I just need to survive until Thanksgiving, when I’ll have a week off.

Dizzying

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I’ve had several break-throughs this past week or so, and it’s almost like I fell into a rabbit hole and came out a different version of myself.

  1. I realized that in response to the structure of my family, I chose, at the age of six, to be the person who would be perfect, and who would make everything okay for everyone. Did you make a decision that hurt my feelings? I won’t tell you, it would make you uncomfortable, it’s okay. Do you have inadequate social skills and monopolize conversations? It’s okay, I will suffer through rather than call you on it. There are a million examples, and I’m in the process of setting myself free. It’s scary but also liberating when say, I’m on the phone with my MIL and she is detailing the various possible locations of the dining table in RVs and I think, “It is not my problem that you are inept at conversation.” OMG IT’S NOT MY PROBLEM. I interrupt the moment she takes a breath, tell her the things that I think are news on our end, tell her that we are thinking of her and that breakfast is ready so I must go. I’m not, ever again, sitting down to a cold meal because someone wanted to tell me how the weather has been everyday this month.
  2. I read this post and saw myself therein. I need to pace myself on a long term basis. This means that my activity level should not spike and bottom out, but remain more constant. I can’t push myself to the edge anymore. At least as much as it is possible–working in theater this over-activity business is kind of “how we do things ’round here.” This is difficult, because it means letting go of the “maybe that was the last flare up” mindset. This is a permanent condition. So easy to write, yet so very difficult to accept.

A result of examining both my people-pleasing at the expense of my own happiness and my tendency to over-activity–both of which are things that hurt rather than help–I did something really out of character. I had a thought, “It would be so cool if I could afford to have an assistant in my studio, even a few hours a week, to do some of the stuff I can’t do, but also stuff I don’t want to do because it takes away from the number of spoons I have to do the things only I can do.” This was followed by the realization that having done away with massage, I am saving nearly $400 a month. I CAN afford to hire an assistant, at $10 an hour, for four or five hours a week. So, I did.

I’m panicking a little now, because this is tremendously new territory for me. My assistant starts Friday, and my goal yesterday was to start a list of what she can do for me. I choked, man. I sat in my messy, chaotic studio and couldn’t figure out what to have her do–because, as I told her when I interviewed her, I am not entirely sure what this will look like. It’s hard to give up control of my creative space in any way, and hard to direct an able-bodied person to do things for me. She completely understood that, and now I am trying to fully understand that, and figure out a list of things for Friday. It’s much harder than it seems, because there’s a lot going on underneath the surface in terms of my own acceptance of my condition and limitations.

I am sure I will make it through, I am sure I am doing the right thing for myself and I know it’s okay to feel like I’m embarking on a trip with no itinerary. We’ll get to the destination we need to get to–we won’t be left floating about the ocean with no sail. Fingers crossed.

Trending Downward

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I had a shaky day post-meltdown, which is to be expected. Great energy was expended, problems were not solved, resultant sense of fragility must be nursed through the day. I got some drawing done, started on the process of tapering off the Propanolol, and even allowed myself to sit on the couch and look at pretty books (this one and this one) and worked a bit on a remake of a dress for an upcoming local production of Passion. I reached out to a couple of friends about where I was at–this is really hard for me because of my self-imposed requirement that I be perfect and never, ever voice complaints. One of them actually said that, “I forget that you have this issue because you never complain.” That is a good summation of two sides of the coin that I have set up. I have some really big and serious going on, I never allow myself to complain. I told her that I live in fear of being one of those people who drags everyone down with their constant litany of sadnesses and infirmities.

This same friend’s husband has a sister who is a Rheumatologist in another city. I called in May and was given the next available new patient appointment, which is on September 4. I’ve held out some hope that this person will be a lifeline for me, that she might be willing to help me manage my care and might be able to refer me to a better cadre of specialists in her area. I will drive for three hours one way to get good care, that’s how inadequate the care here has become. However, when I made the appointment, they mentioned that she is not in my insurance network, BUT that the insurance would often pay since I was traveling to see her.

I am not naive. Along with the hope I’ve clung to, I’ve known that my insurance paying because she was out of town was a fairy tale. Yesterday I sat down to sort that out. That is the same as saying I sat down to go on ahead and break my own heart. The insurance confirmed that she is not in network. They offered the possibility that I could get a “PPO Waiver” if it could be demonstrated that she was the only person who could treat me, and no other in-network doctor could do so. So I called the doctor’s office back. They confirmed that they do treat EDS patients, but I would have to talk to billing about a waiver. Billing politely told me that an out of network visit would be $95 at the door, and a resultant $300-500 bill later. They wanted me to have my insurance contact THEM about the waiver–a concept that the lady I talked to had never heard of.

So I called the pre-authorization number my insurance gave me. I explained the situation. They said that they would start a case, and investigate if there really wasn’t anyone in network who could provide care (at this point, honestly, I considered hanging up and building a blanket nest and not coming out for three days–I know tilting at windmills when I see it). They also wanted me to then provide this phone number and fax number to the doctor so she could send clinical details to them. Um, wait, I said, I’ve never seen this doctor. She can’t send clinical details to you.

With a clanging of funeral bells, they said then my PCP would have to do that. I could hear Monty Python’s “Bring Outcher Dead” in my head, and there was no reason to argue the point as I’d certainly be dead soon enough, might as well lay down on the cart. I called my PCP’s office. I had the (not) pleasure of speaking not to Beehive, the receptionist, but Incompetent L., my PCP’s assistant. I explained the situation to her. She said, “Well, he’s only here half a day on Fridays.” She tells me this every time I call on a Friday, like it’s a national holiday and I have violated protocol. “Also,” she went on, “He’s on vacation next week.” Okay, I said, well, my appointment is on September 04, and I’ll need time to cancel it if this doesn’t work.

First, she doesn’t even understand what I am asking, and even more will be lost in translation when she gives the message to him. Second, he has referred me to this doctor because I asked him to, not because he found someone he thought would help. Third, he’s a fucking chiropractor with a nurse practitioner’s license, and the only weight that will give his opinion is that clearly HE is not the right person to treat me, but there will be long lists of others that my insurance will say can do so. What Rheumatologist won’t say yes when asked if they want to get paid to see me? And how detrimental are most Rheumatologists to people with EDS? VERY. Very detrimental. It was the personal connection to this one that might have been a game-changer, but now I will never know.

I don’t know how many final straws there are, or how many death blows one must be dealt before giving in, lying down and accepting defeat. I’m close. I long to fire my PCP but I can’t because then there would be nothing. Yet, he is doing me so little good at this point, he has made big mistakes with my care, and I can tell he is tired of not being able to fix me. It is warped that I care at all about his ego and the challenges of caring for a patient like me because guess what? It’s worse to be the patient in this scenario than the care provider.

I found I had not run out of tears, not by a long shot. There are plenty left in the tank.

Maybe I’m Allergic to July

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If my husband were writing this, he’d likely say that my sudden descent into fury and then hysterical, ugly sobbing for over an hour last night came right out of the blue. Except that careful examination of events leading up to that suggest that there were many warning signs that might have been noted in order to batten down the hatches in time. I am past the point in my life where my behavior is something that happens in a vacuum and is related to the inscrutable whims of having ovaries.

Most of my life my emotional tactics have been polarized by being in the shadow of a person whose voice needed to the the loudest in the room, whose needs had to be greater than anyone else. The tacit agreement that this person deserved all the space/love/attention was that which forced me into a corner with my own emotions. I’m tightly lidded, and sometimes  even I am not reading my inner barometric pressure very effectively. It’s my job to be fine. Always. It’s my job to be rational. Always. I am never sure what the right balance is, so I tend to fail to release some steam in time to avoid a complete breakdown. Sometimes I’m not in touch with my feelings enough to know that I need to bleed a little air from the lines before something blows.

Second only to having a rare, incurable condition that includes chronic pain and a host of other oddities is the isolation and loneliness that come with it. It’s not as if someone comes across to find me bleeding from the head or with a visibly broken bone that demands action. People really only know if I am in pain if I tell them. It’s not my style to report my pain to people constantly, and I don’t want to become the sort of drag that can only talk about themselves more and more loudly to gain attention. I compensate well enough to fool even myself sometimes.

From Sunday night until Tuesday night I woke at about 1:30 or 2:00 am, with significant pain but also a racing heart and scattered, unsettled mind. I lay awake until 4:00 am each time, trying not to freak out. Tuesday night I planned for it. I drank less in case that was the issue. I took a bath to relax (instead it put my heart rate at 119, but I tried) I went to bed early. I set my mind up with things to think about should I wake up, and reminders about relaxation. I woke up at 1:30 am feeling both angry and unable to focus or settle my brain. My shoulder was terribly painful so I iced it, and whiled away the anxious hours until I fell briefly back to sleep at 4:00 am.

Once I got up, I Dr Google’d the beta blocker I’m on–Propanolol. Surprise, it can cause wakefulness and disturbed sleep particularly in the wee hours. Believing my PCP to be away on vacation, I finally decided to text him anyway around 10:00 am. I said to my husband at lunch time that I didn’t really think I could be asked to deal with all of this (pain, sleeplessness, lack of professional medical support). I caught the edge of tears in my voice and stuffed that back away. Part of me might have hoped that my spouse would immediately take me in his arms and reassure me, but that part of me is an immature girl who wants her mind read. Or, what it really is–I need someone else to bridge the gap between the growing emotional tension and the place where I can let some of it out constructively. When they don’t hear that unspoken request, I feel abandoned and angry.

I waited all day to hear from my PCP. I finally did, at a little after 5:00 pm. He’s not away on vacation after all (the only excuse I would find acceptable for not getting back to me). He told me to taper the Propanolol. I had to query then as to how much? How long? A series of texts trying to elicit information from him. And then at the end of that conversation he texted, “I have another EDS patient who is doing well on Cymbalta. Have we tried that?”

If you wish to go back through my archives you can see that last July/August, we tried Cymbalta not once, but twice, and my reaction to it skirted the edge of “needs to be hospitalized”. On the surface, maybe, this is just a boo-boo on his part. To me, it felt like a ton of bricks. First, it would help if my PCP remembered my history, especially the parts that required constant texting for two or more days to make sure I got through the reaction. Second, I felt shamed; he has another EDS patient who is apparently easier to work with and gives him the satisfaction of helping. Third, I was alarmed that he thinks he’s good enough at this to manage another EDSer, because I generally feel like he would give anything to pass me on to someone more competent.

I texted back, “Twice. Serotonin reaction both times.” I never heard back. I actually went back to my archives, too, to make sure that my recollection was correct–once again allowing a medical professional to cause me to question myself and what I know. My husband even said, “That’s what he tried on you last year that was so bad?” At that point I was already imploding and missed that he was with me on this and might have my back. I was aware of feeling angry and tired and pain. I did not take a full inventory to see that my internal pressure was approaching the red line.

I’m giving up massage, the one thing that I could hang my hat on as working and helpful. My shrink is retiring in September. My pain has ratcheted up significantly. I’m again having a drug reaction that crosses yet another item off the list and leaves a significant problem unsolved. I haven’t slept well in awhile. I don’t have adequate medical care or support. I’m going back to work soon, when I will not have the ability to sit around all morning because I stayed up crying half the night. I have lost some of the support I used to get from my mother, because a mentally ill family member is too close for her to not to lose her focus and boundaries. There are NO solutions for any of my most pressing problems.

So the fact that I then went on to very much overreact to a perceived slight on the part of my spouse and go on a rampage of shouting that ended with him leaving the room while I sobbed and ugly cried is somehow not so surprising as it seemed last night. I can see that I made myself unlovable even as I demanded it from him, and was somehow thorny while wanting him to be willing to hold that thorniness close to him and be tender with it. I can see that there is no way I can be neat and surgical about my emotional state and subsequent falling apart. I completely lost my balance last night, and I feel pretty wobbly yet today. I’m not sorry for the sobbing because I needed to release it. I’m sorry I wasn’t able to let any of it out before it reached the atomic level. I don’t know how to have a well-timed, scheduled breakdown, nor should I be so constrained, but for my own sake I need to stay a little more in touch with my internal state.

Which is difficult when so many things are just not working for me right now. I’m probably not done crying.

Like The Star Wars Trash Compactor

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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 Whole Kettle of Fish: A Study in Emotional Exhaustion

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We have returned from a trip to the Chicago-land area to visit the in-laws. As it always ends up, it was challenging.

The Thursday before we were to leave, I took  a very old, very sick dog to the vet for the last time. I had been up all night with him, setting me up for going on “vacation” (and I use the term very loosely) exhausted. It’s never easy to decide to euthanize a dog, and I don’t judge others whom I know love their pets dearly, as do I. We do the best we can.

I had only just returned from the vet, and the child and I were weeping in the hallway (without hugging, since I had dog poop all over me) when my doorbell started ringing over and over again. A peek outside confirmed it was someone with whom I want no contact, and from whom I fear violence. Unlike a normal person, this one chose to ring the bell over and over and over again, pound on the door, ring the bell, etc, for around 15 minutes. The child and I retreated to the back of the house and called the police. They just missed our unwelcome guest, but will now be watching for her. I was so stressed that the responding officer took both my violently shaking hands in his and said, “I can tell you are really frightened. Take a deep breath.”

——

The next day should have been for resting and packing, but I had bought tickets to see Wicked in a nearby city for that night, the night before we would leave for Chicago. We went, but I couldn’t enjoy it as much as I’d have liked–I was too caught up in feeling like I wronged the dog, angry with the unwelcome visitor (who should know better), worried about packing and, oh, the fact that I find flying terrifying. I found that at each musical number, I was beset with an almost overwhelming urge to ugly-cry. We got home late, got up the next day, packed, and headed back to that same city’s airport to fly out.

We were fine from El Paso to Austin, where we circled and circled and due to storms were diverted to Dallas. We sat on the ground in Dallas for three hours, while our flight to Chicago left without us. We flew back to Austin. I had quickly booked a hotel online while we lingered on the tarmac, paying an outrageous sum of $200 for a near-to-the-airport La Quinta. By the time we arrived in Austin (Trapped in Texas, Chapter 1), the airport was all but shut down. They booked us on a morning flight that would go through Dallas once again.

La Quinta refused to accept our distressed passenger voucher because they are total dicks and I hope they are someday financially ruined. We stayed in a room with a shower so gross none of us were willing to use it. The bathroom door wasn’t a door, per se, but two cabinet type doors with shuttered vents (like closet doors) that couldn’t be locked and the knob fell off. The hotel was full to the brim of loud, shouting, running people all night. I had not packed any wine, so I spent the night dozing and hallucinating to the tune of six Benadryl, while also berating myself for my needs.

We made it from Dallas to Chicago, and went directly to the Huge Family Gathering that the in-laws had scheduled so we could “see everyone.” It was raining. They did not, therefore, move the party into their house, they moved it into their filthy garage, next to the truck they for whatever reason did not see fit to move to better accommodate their guests. The first thing my FIL said to my husband was not, “How are you?” or “You must be exhausted.” It was, patting stomach, “Getting a little bigger, huh?”

My MIL informed me in whispers that she hadn’t told my husband but she had developed a serious spinal condition (Spinal Stenosis) and had been unable to walk and might need surgery. This is par for the course. My FIL explained to me and the child that the reason it was raining here but California had a drought was because “the liberals” got rid of the smog, which used to hold the rain in California. The child is 13 and he was baffled by this amazing, magical bullshit. We met cousins with whom we had nothing in common. We talked to other people about themselves and no one asked me much about me (also par for the course). Oh, except for when my FIL told my husband’s cousin that she should have me make her wedding dress, and also that I make, “Crazy weird costumes with funny legs and stuff.”

Oh yes, I know that this is what the FIL considers “praising” but I am far too evolved to accept that being passive aggressive is anything other than what it is. Which makes it hard for me with them, since I won’t play pretend.

The evening goes on and on and on until I finally say, “I am too tired. I must go to bed.” Then I am stranded in the filthy, moldy basement because not only are there stairs, said stairs have a pretend railing that threatens to fall off should one use it. My husband realizes this belatedly.

There are stairs at my BIL’s house, which means I must carefully plan my ups and downs. There is also an atmosphere of suppressed rage that I am especially attuned to, and which my spouse can’t notice. It takes us forever to get our shit together the next day, sitting in the ‘burbs in the rain, and we finally meet up at a Dave and Busters. I drink. I can’t help but simply order two drinks per encounter with the parents-in-law. The child balks initially (look at all those KIDS, he says, in disgust) but then has fun. Then we all retire to the BIL’s to sit and stare at each other.

The BIL disappears to the basement to play video games with the child. The MIL asks how my hands are (it has been two years since diagnosis, they still can’t stick with a conversation long enough to find out what I have). I say they aren’t very good. I mention that since it’s genetic, I have to just try to pace myself. My FIL asks me if changing my diet would help. I say, very evenly, that this is a GENETIC disorder, meaning my GENES are flawed, and the GENE that is flawed is present in 90% of the body’s structures, so NO, it’s not an issue of changing my diet. He falls back to his climate change theory and then they spend 45 minutes giving us an intimate blow-by-blow of my MIL’s recent, very scary MRSA infection. The MIL can hardly tell her own story because the FIL is trying to talk over her. My silly story is left far behind.I go to bed at 8:00 pm, alone, which is how it always works there.

Everything we eat is gluten. I give up and accept that I will just take immodium every day and gain five pounds.

Day three it rains. The BIL takes the child to the movies and the husband and I go to a nearby suburb’s charming downtown, have an expensive lunch and a bottle of wine, wander about, then collect them. We later meet the in-laws for dinner at an Italian restaurant they like. I stick my FIL with buying my dinner and two glasses of wine. My MIL mentions that we aren’t staying for very long. I resist mentioning that it feels like a life sentence. We planned four full days–not our fault one was lost to travel, but that one still would’ve been spent sitting in their goddamned garage. I mention that guests, like fish, begin to smell after three days. She agrees gaily, entirely missing the point, which is that we are staying four and when they come out to see us, they never stay less than an entire week.

Day four we go into the city. The in-laws refuse to go with us, but resent that we aren’t, I guess, sitting in their living room. We take the train, and are planning to take a boat tour of downtown architecture. The BIL leads us on a forced march that despite claims of, “We’re almost there” is far, far too long and too fast and too many stairs for me. My husband weakly mentions maybe a cab but is overruled by the BIL.

I should have stopped. I should have insisted on a cab. I relied on my spouse who cannot function or be decisive around his family. So it’s my own fault that every step I go up now, my left knee snaps and then grinds.

The boat tour was fun. Then we faced another forced march through the city, where we couldn’t find anywhere to eat, where the husband couldn’t make a decision, and there were words in the business district. I was hangry, exhausted physically and emotionally, and as usual, he didn’t have my back.

Upon returning we declined meeting the inlaws for dinner, and I went to bed. Alone. Early.

We met the inlaws the next day for breakfast before our flight. They, predictably, chose a place that could be called “Breakfast in Anywhere, USA”. They aren’t gourmets. Any anecdote I related about things that interest me was met with a complete lack of understanding, being talked over by my FIL with his penguin laugh, or silence.

Soon, the husband and I will have a little post-mortem, and I will explain that this trip we just finished? It’s the last one I’m taking to Chicago.

Someone’s got to have my back, because it hurts right now, along with my hips, my knees, my ankles and my calves.

Jumbled Thoughts and a Jeep

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Endless analysis isn’t healthy, yet my brain loops happily long after it’s productive.

My spouse wants to buy a WWII-era Willys Jeep. I am angry about the Jeep. I could spend hours trying to figure out why. But I would still be angry.

So, I’m angry. I feel like I’ve been set up to be the person who is no fun. I feel jealous. I feel left behind. I feel set aside, unnoticed, left out. I feel afraid.

Afraid of a Jeep? Yes, apparently I am. I have listened to things like “stiff suspension” and “bouncing around the goat trails” and “fun” and I know those first two mean that the last isn’t happening for me. It is something he will do without me; and not because I don’t want to (which is the position I am outwardly holding) but because I don’t think I can, which is the part where I feel like crying instead of feeling angry and hateful.

I feel left behind. The next thought that seems to follow that is that I feel that way about our upcoming visit to see his parents in Chicago (the Chicago suburbs, I add, hastily, having learned there is a VAST difference—learned because “my parents live in Chicago and have a pool” conjured an entirely different scene than “they live in a suburb in a smelly house with a crappy above ground pool full of goose shit.”). We stay with his brother, who has stairs. I am deeply worried about the stairs, and also feeling exposed and vulnerable and on my own–which is how those visits ALWAYS feel to me, and that was before I was so affected by EDS.

That’s it, really. I feel alone, and like I am being left behind, and like I am not worth the trouble. I cannot sit in one position on the couch for very long without something starting to hurt; I won’t do well being bounced around in a Jeep. It’s like when we talk about how much we think the child would like snowboarding and I wonder what would I be doing? Sitting alone in a hotel room?

Before my Grama died my mother and I took her to California for a niece’s wedding. We went out shopping and Grama said she would be perfectly happy sitting in her hotel room while we did that and I still feel like crying when I think about that and how much I don’t want to be left behind. I don’t want to miss out. I don’t want to be excluded, or cast as no fun, or the problem.

The Jeep makes me feel like I am. The stairs make me feel like I am. Right now, my spouse makes me feel alone. Not out of spite, but out of not being in my shoes.

They say that ultimately, we are all alone.Pity it makes us so uncomfortable.