Monthly Archives: August 2015

NEVER MIND.

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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

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

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

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

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

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

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

Insurance PA: Er, right.

Me:.

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

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

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

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

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

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

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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

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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.

Sorry, Reality, This Isn’t a Good Time

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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

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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.