My Job and My Heart

Standard

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.

NEVER MIND.

Standard

The doctor’s office just called and cancelled the appointment I have been waiting for since May. That the post below this is focused on in terms of how hard it’s been to even get this appointment. That I have a hotel booked for, that I have hired a house/child sitter for, that I have taken time off work to attend.

Cancelled.

They’ll be happy to reschedule me.

In Fucking February.

If I Got Paid For This

Standard

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?

Like An Old Friend….That I Really Hated and Hoped Was Gone Forever

Standard

Gnawing stomach has returned. Like a pesky alcoholic neighbor with poor boundaries, Gnawing Stomach (GS) always arrives in the wee hours, between 1:00 am and 3:00 am. GS arrived this morning around 1:30 am, and finally at 4:00 am I got up, got out my script for Frankenstein and read it since laying in bed listening to the gurgling roar of peristalsis as my gut processed itself was not going to do me any good. GS was in good company last night, since Hip Pain, Back Pain, Ankle Pain, Wrist Pain and Shoulder Pain were already partying down when she arrived.

GS is like a small rat is nibbling relentlessly at the center of my stomach. Sometimes it is drowned by cold water, but more often not. Antacids do not seem to help, but someone took two extra-strength Zantac at 2:00 am just in case. It’s kind of like a switch has been flipped telling my stomach that it needs to begin the waves of peristalsis that are the normal contractions of the gut to move food through–but there’s no food in there. Said contractions are contagious, and pretty soon my intestines are singing opera and stomping their feet to the infectious beat, beat, beat.

Now, we got a little intoxicated yesterday and ate a very salty dinner, so that could be the culprit except that GS actually arrived the night before, with little fanfare and what seemed a much smaller rat whose chewing I was able to mostly ignore and return to sleep after an hour or two. That night I actually had less alcohol than normal and had not had as much salty food–although, to be a good detective I note that prosciutto was involved both times. Not that my body normally rejects prosciutto. [Let me pause here to say that I spelled prosciutto correctly without looking it up, HIGH FIVE BITCHES]

The thing is, about 3 months ago, I discovered that Chia seeds are the key to having a colon that functions like a normal human colon instead of a rabid, unpredictable camel. Despite all the other myriad blows I’ve suffered this year in terms of health, every morning when things (you know what I mean) happen, I am careful to send a silent “THANK YOU” to the universe so that my body knows I am really, really proud of it and would like to take it out for ice cream for being so good. I’ve considered getting a gold star tattooed on my ass, seriously, I really value normal bowel function.

That said, I now face a long day with a rumbling stomach and shaky exhausted feelings. I’ve invited Immodium to spend the day with me and work some anti-spasmodic magic so that I do not have to abandon students in the basement while I dash to a bathroom. Immodium and I used to be really, really tight; like, we talked on the phone nearly everyday and went everywhere together. Immodium’s a good enough friend that she was happy for me when I moved on, so I don’t think she’s behind the visit from GS, however….one never knows what a spurned lover might do.

All I know is that I need to figure out what sort of exterminator is needed to have GS ejected from the game–and preferably in the form of a lifetime ban.

I Think I’m Maybe 86 Rather Than 46

Standard

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.

Sorry, Reality, This Isn’t a Good Time

Standard

This summer is the gift that keeps on giving. I had my teeth cleaned yesterday; an activity I despise anyway, but which has become harder due to EDS. My hygienist murmured that she didn’t remember what we did last time but if we needed breaks we could take them. She started to torture me and I politely raised a finger. She stopped.”You gave me bite blocks last time.” Oh, she says, she must not have written that down. Except then she looked at my chart and she *had* written it down. My tolerance for any issues right now is well below zero. In the time she was saying she didn’t remember, she could’ve been looking at my chart. I am a font of magical ideas, man.

My dentist came in at the end and asked about my jaw, which I reported is making a sort of scraping sound when I open it. He said this was the joint rubbing against the bone and if I developed a lot of pain or found I was losing function to make an appointment. Then he said, “I’ve been researching Ehler’s Danlos and wow, that’s an interesting malady. Do you also have Sjogren’s? That’s pretty common in patients with what you have.” I said I had wondered, as for about the last six months or more, I wake up in the middle of the night because my mouth is so dry I can’t swallow. “Yeah,” he said, “You probably do. We’ll start you on a high flouride toothpaste that you’ll brush with at night and then don’t rinse your mouth.”

So naturally I trot home and take a hard look at Sjogren’s Syndrome and surprise! I’m pretty sure I can add it to my collection of EDS co-morbidities. I also looked up how to pronounce it, since the word itself offers few clues. It’s “Shoe-grens”. You’re welcome. There is a similar issue with Ehler’s Danlos, is it Aylers, Eh-lers or Eee-lers? I say “Eh” lers, which is probably wrong but I’ve heard every variation.

ANYWAY, Sjogren’s is an auto immune disorder wherein a person’s immune system has a meeting of the war council and pledges to attack the moisture producing glands related to mucousal membranes. So, dry mouth, dry eyes, dry nose, dry lady bits (giving new meaning to the treasured insult, “dried up old cunt.”). My mouth is terribly dry, which I had been thinking was pretty odd, given that I come from (and had been a member of) a pretty juicy family. My nose is also dry, and often I get cracks in there that make even the slightest magical gesture very painful. My eye doctor mentioned that my eyes were mild-moderately dry.

Sjogren’s is typically diagnosed and managed by a rheumatologist. You know, like the one I can’t see in Albuquerque. My options at this point are as follows:

  1. Do absolutely not a goddamned thing about it.
  2. Keep the appointment in Albuquerque and pay out of pocket.
  3. Text my PCP and ask him to call my sort-of former Rheumatologist here and see if he can smooth things over so I can crawl back to that guy and get his opinion on diagnosing the Sjogren’s (for which there is not a definitive test, rather, a collection of evidence that points in a direction, but only sort of).

I keep telling the Universe that I have more than I can handle on my plate, yet the universe seems to be an old cafeteria lady who is hard of hearing and keeps giving me another scoop of lukewarm mystery meat with gravy.

Dizzying

Standard

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

Standard

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

Standard

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.

Where Have I Been? Nowhere, Just Here.

Standard

Broken Ankle Update:

No invasive surgery required. Instead, they did a “closed reduction,” meaning they knocked the child out with general and manipulated the bones into place (note: you must be very strong to be an orthopedic surgeon) and put him in a long cast. The “long cast” goes above the knee so that he can’t move the tibia at all. It sucks in terms of mobility since he can’t bend his knee. That cast stays on for three weeks, then a short cast for four weeks, then a boot, then physical therapy.

Vacation Update:

See above. No vacation.

Art Update:

I have decided to pitch an adult coloring book to a publisher, so I’m working like crazy on that and forcing out all insecure thoughts. If I can’t get published that way, I will self-publish. I think I am onto something here, and it’s an exciting prospect.

Sewing Update:

Still sewing, but nothing too interesting right now. I need a good camera so I can actually take professional looking photos of my work instead of crappy photos on my phone or iPad.

EDS Update:

Christ on a cracker, it sucks.

1. Massage has stopped helping. I’ve been trying to avoid voicing this reality, since it means I no longer have anything for managing pain. That’s a really unpleasant place to find oneself. But, for $95 a week I should be feeling relief for at least a few days afterward, and I’m not. Sometimes I feel worse. I have to figure out how to man up and tell my therapist this, since I like her a lot and it’s not her fault but I do have to stop throwing money away.

2. About two weeks ago my left thumb chose to lose about 30% of my pinch and grasp ability. I can’t lift anything of weight (like a plate of dinner) with either hand if the weight is mostly to go to my thumb. I feel like I have silly paddle hands as I try to work around this, and it’s painful. I can’t have my CMC joints fused unless I am ready to quit my job and possibly lose the dexterity I need to sew and draw. Which is sort of the same as saying I have to give up oxygen. So I’m stuck.

3. My shoulders are worse again, and I cannot under any circumstances sleep on my right side. I wake up around 2:00 am every morning because I am in pain, and it can take up to two hours to get back to sleep. Sometimes I can be sitting at the table talking to someone and a third of my brain is occupied with how much it hurts to just deal with the weight of my shoulders hanging off my neck.

4. My back is verily fucked up and hurts all the time. I have two degenerated discs in the lower back (L4 and L5) and what I probably really need is to get a chiropractic adjustment. But, that is problematic for EDS, and so I have mostly given up on it at this point. My last stab at that was my PCP putting my upper rib back in place and it popped right the hell back out within hours, so that was a wash.

5. 80% of the time, or more, I can deal with my level of daily pain. Sometimes, though, it just seems like it is far more than a person should be asked to deal with, and I have a day or days of feeling really angry and frustrated and sad about being in pain every single damn day. Which is why it’s hard to give up massage. This weekend is one of those points where I’ve had it with my body and my discomfort and there’s going to be a pity party. Which is not a party I can even enjoy.

Overall Update:

Ugh, except for art, which is good.