Tag Archives: EDS Patient Game

Getting an A+

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

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

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

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

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

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

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

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

Sweet old lady: What? What did you say?

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

SOL: WHERE? WHAT?

Receptionist: AFRICA!

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

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

SOL: What?

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

SOL: What’s your name?

Receptionist: Adawnna.

SOL: What?

Receptionist: Adawnna. (leaves)

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

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

SOL: Where?

Husband: AFRICA. WHERE YOU CATCH THE EBOLA.

SOL: She said I have the Ebola?

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

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

Then they laughed and laughed.

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

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

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

Of Beta Blockers, Side Effects and Unreturned Calls

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

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

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

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

Of course no one called me back, right?

Right.

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

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

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?

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.

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.

It Was Bound To Happen

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I’ve been free of prescription meds (with the exception of my asthma inhaler) since last summer’s drug debacles. I’ve not been in physical therapy, I’ve not seen my former rheumatologist, I’ve not seen my PCP for anything EDS-related except to get a referral to a doc in another city (who can’t see me until September and who might not take my insurance, anyway). I’ve stuck with the Shrink and massage and wine.

My shoulder pain, by yesterday, had gotten to where I felt short of breath. Yesterday morning, as I sat at the table drinking my coffee and wasting my life online, everything went black. I had a second before my face would’ve hit the keyboard to take a really deep breath, and the mist gradually cleared. This has happened once or twice before, but usually with warning. My heart will suddenly flop, or whomp against my chest, and I know to take a really deep breath. It’s never been that it was suddenly lights out, no warning.

I checked my blood pressure and pulse and they were both high. I worried that I was having a heart attack, or that my lung had collapsed, etc. I called my mother to consult (I am the best unlicensed physician you ever met, but self-diagnosis requires a consult with the second-best unlicensed physician). She agreed that I needed to call my PCP. Also, she said, I shouldn’t drive myself to the appointment.

I called the office and the assistant gave me a 2:00 pm appointment. I texted my PCP. As an aside, let me note that I loathe my PCP’s office, which is crappy. I find his staff generally unprofessional, inefficient and sometimes stupid. He is in a practice with his father, so his mother is the office manager and my, that was a bad idea. There is even less than the standard of zero confidentiality that exists in this town. I stay with them only because my PCP is really smart and good at what he does, and because we are friends and I can text him.

I texted the details to him and he replied: two options, a) see (asshole cardiologist) or b) I’ll do an ekg in the office. I picked the EKG. My husband took the afternoon off to drive me to the appointment. The EKG was normal enough. The symptoms (including a migraine-esque headache) were all clearly of the autonomic/P.O.T.S. variety. We have already tried the benzodiazapines, the SSRIs with no success. That leaves beta blockers, so I now get to take Propanolol. He gave me a tiny dose–10 mg twice a day. I suppressed my standard objections–they’ll make me tired (he had predicted that and suggested this was least likely to drag me out), I don’t want to take medicine (then don’t go to the doctor), etc.

He felt my shoulder/neck pain was coincidental. The other reason I stay with him is that he’s a nurse practitioner and a chiropractor. He said that people don’t realize that we have ribs going all the way up the spine, and he felt that one or two of mine were out of place. He adjusted my neck and shifted the rib back in place. It may have been subluxed by massage, but who knows?

This morning I am worrying about taking a new drug and what it might do to the delicate balance that is my gut, and frustrated because my shoulder still hurts. I’m back on the medical merry-go-round, and while I know this past year was borrowed time, I’m unhappy about having to get back on that ride.

Going Forward, Not Backward

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I detailed the horror of my last dental appointment here, exactly a month ago. Today I was due to go back and either reject it and not pay for it or keep it and pay $318 for the privilege. Often, prior to a healthcare appointment, I have carefully crafted a script of what I want to say. Then, upon arriving, the script dissolves into the culturally approved people-pleasing and acquiescence to the provider’s perceived higher status and I end up leaving feeling like I failed yet again.

Today’s script went this way:

Me: “I considered never coming back after what happened last time. I need you to understand that for me, having EDS means that over and over again a solution is offered (Physical Therapy, drugs, etc) and instead of it helping, I come away injured and set back. This experience makes it that much harder for me to trust that anyone can help me, and that much more worn out from trying.”

And, here’s what I ended up saying:

Me: “I considered never coming back after what happened last time. I need you to understand that for me, having EDS means that over and over again a solution is offered (Physical Therapy, drugs, etc) and instead of it helping, I come away injured and set back. This experience makes it that much harder for me to trust that anyone can help me, and that much more worn out from trying.”

High five to myself. My dentist was sorry and only slightly defensive. I pointed out that I was not criticizing anyone on his staff, I was simply noting that I am a very different patient than what they normally work with, and it is much harder to successfully treat me, and I needed him to hear and understand how it feels to be me interacting with health care. And, I think he did, I think he understood and that we can go forward, and maybe I’ve educated him just a bit about what it’s like to be the unusual person with the paper towel around their neck and an appliance stuck in their mouth.

I paid for the thing, and he didn’t give me another bottle of wine, but mostly I think we’re okay, and I’m not sitting here feeling disappointed that I wasn’t able to speak my mind calmly and reasonably. It’s a wee victory, meaningful only to me, but I’ll take it.

Because Not Everything Sucks All The Time

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Last time I went to the dentist, my jaw tried to slip out on the right side and got about halfway there before I made it go back. That was just because I had experimentally opened my mouth before hygienist put anything in there. Long story short, I couldn’t eat anything solid for five days afterwards, and asked to be put on a 9-month recall. So it was with no small amount of anxiety and concern that I approached my dental appointment yesterday. I told the hygienist straight up that I was pretty freaked out about it, too, and had arranged my massage for immediately afterwards in the hopes that the massage therapist could help if anything had completely gone to hell.

Also, I would add, I HATE having my teeth cleaned. The scraping means I have goosebumps running up and down my body the entire time. The hygienist offered small bite blocks, that meant I wouldn’t have to work to hold my mouth open, which was brilliant. She gave me rests between each step. My dentist listened to the story afterward and we played the EDS Patient Game.

Dentist: Let’s get her some Ibuprofen

EDS Me: I can’t take any NSAIDS.

Dentist: Oh, okay, let’s get her some valium.

EDS Me: I can’t take anything in that world, my PCP hooked me on them and I spent the summer withdrawing.

Dentist: Have you tried Physical Therapy?

EDS Me: They routinely injure me. It’s a no-go.

Dentist: Let’s set up a consult where we aren’t rushing, okay? I’m leaving you a bottle of wine at the front desk.

I’ll get back to that consult in a sec, but the positive thing is that while I was not pain-free after the appointment, between their measures and my massage therapist, I can eat and nothing is subluxated or dislocated. That’s a win.

I did set up the consult, but I have my doubts. My teeth only touch in two places, so I know a big piece of trying to help the jaw stuff is going to be braces. But I a) am about to put braces on the youngest child so $$$ and b) cannot take anything for pain so: suckage. I will hear him out but I suspect it will be kind of like the EDS Patient Game all over again. I like the hell out of my dentist and not just because he gives me booze, but I am WAY nervous, as usual, about attempting to do anything.

But I can eat food today, and that’s a hell of lot better than I expected.