from bad to worse

I had to cut my visit with my friend short yesterday on account of intense nausea.

Not to mention anxiety.  it’s not as bad as it was, but it’s creeping up and that disturbs me.  I know this is triggered by the difficulties managing my GI symptoms and diet, and the concerns about having to wait so long to see someone new.  I tell myself that I can hang on, that I’m strong, and that it’ll get better but it’s hard.

I called the potential new GI back yesterday (through nausea-gritted teeth) and asked if they had a cancellation list.  No, they told me, but it’s ok to call every morning and see if there have been any cancellations that day.  “Are you sure I won’t be a major pain in your ass if I do that?” I asked.  They assured me that I would not.

I didn’t call today because it’s supposed to be ungodly hot out today and I need to rest from yesterday.  I decided today will be a rest, rehydrate, and try to “eat” more than 600 calories.  I set my phone timer so that I can drink a half a shake every hour, if I keep it up I should get in about 4 shakes today (I have to stop “eating” by 6:30 or the reflux is terrible).

But tomorrow,  I am going to call.  I printed out my reports, I have my hopefully soon to be former GI doctor’s notes from last year (not from this year but I can get them if the new guy wants to take me on as a patient).  I feel like so much is at stake here.  At the urging of an online friend from a patient forum over at Inspire, I tried looking into the motility specialist at another of the B.A.T.H.s in town.  Well, actually what I did was call my insurance to see what I would be charged if I saw someone at the other BATH that is out of my “preferred network” (more on that in a sec) and found out that for pretty much every procedure a GI doctor would do, I would have to pay $150.  Only an ultrasound, plain x-ray, and lab testing would involve no out of pocket costs.  So endoscopy?  $150.  Ph testing?  $150.  Esophageal manometry?  $150.  Great.  I can’t afford that.

I have “good” insurance.  If my current GI doctor did any of these tests, I would have no out of pocket costs.  That’s because my current GI doctor is in the “preferred network”.  The “preferred network” exists because my insurance is through my husband’s employer, which happens to be a monster health network that comprises two of the better known BATHs in the city and several smaller hospitals to the north and west of the city (but not to the south, oh no….never down here.  The proximal southern suburbs of the big old historic city are not wealthy like the proximal western suburbs – as for the north, I’m not sure what that’s about but the monster health network managed to worm their way in up there but not down here).  Anyhow, my husband is a researcher in a lab that is part of one of the hospitals in the monster health network, and as such, he can only choose an insurance plan that has this “preferred network” shit, where you pay a lot less for going to doctors and facilities in the monster health network.

Sounds just fine, although certainly nicer if you don’t live south of the city, except that I have to see what I call “very special specialists”, and these are hard to find.  Some of them just don’t exist in the monster health network, for example, they have no autonomic neurologists in their network. They had one guy who was just starting out, but his mother got sick and he took an indefinite leave to take care of her.  The monster health network has exactly TWO motilty specialists, both at the same practice.  I see one (my current and hopefully soon to be former GI doctor), and have tried to transfer to the other but was denied that privilege by the office management.

Which leaves me very much shut out of getting the help I need.

I woke up this morning with the anxious chatter in my head again.  This is the second day of that, I hadn’t had this for a few weeks and I really thought it was over.  But I guess not. I think for a while, I’m just going to be extra susceptible to excessive anxiety during stress.  Unfortunate, to say the least.

No help

GI doc called back Monday, after I faxed her a three page note updating her on what’s been going on the last few weeks and asking her basically “wtf do we do now?”

She was not much help.  She said, in regards to my big weight loss and liquid only diet (on which I am still very gastroparesis symptomatic) “ok, well that works for you so just stick with that”.  Yeah, um, how about some nutritional counseling?  My diet just shifted dramatically, it’s clearly insufficient in a macro-scale since I’m losing weight on it, and god only knows how my micro-nutrition is doing.  But nope, she doesn’t think about or care about that.  Then she went on to her “let’s try Lyrica” thing again.  “So I know you proposed that as a neuromodulator for pain due to the idea that it’s visceral hypersensitivity, but the pain is not my most limiting upper GI symptom right now, right now the things that are making it hard for me to eat and drink enough are getting full too quickly, bloating, horrible heartburn/reflux, and regurgitating food.  So what of those symptoms is the Lyrica supposed to help with?” I asked.

“all of them” she said.

Pardon me, but I believe that is a load of shit.

The most I could find was one tiny study done using pregabalin (lyrica) to modulate esophageal pain thresholds in (a very small number of normal, healthy) subjects who were first “hypersensitized” to pain using an acid infusion: Randomised clinical trial: pregabalin attenuates the development of acid-induced oesophageal hypersensitivity in healthy volunteers – a placebo-controlled study (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2011.04955.x/full).  Go check it out.  The full text is online.

Even with a charitable view that the results of this study are meaningful, valid, and generalizable beyond the tiny little sample they used (and to the unhealthy people who would be prescribed Lyrica for esophageal pain due to supposed hypersensitivity resulting from acid reflux), they just flat out don’t pertain to the limiting, NON-pain symptoms I described to my GI doctor.

So anyhow, I said fine, I’ll try it. She said she’d call it in that night (Monday) or first thing Tuesday.  We confirm my pharmacy.  She says to try it for a few days and then call her at the end of the week to let her know how it’s going.  Tuesday, I wait until early afternoon, haven’t heard from the pharmacy.  So I call the pharmacy, nope, they don’t have a script from her.  I call her office.  They don’t call back.  Wednesday, I call the pharmacy again, they don’t have it yet.  I call her office and talk to her (awful) receptionist.  She says she has to ask the doctor, calls me back and says the doctor mistakenly called the script in to my mail order pharmacy service, which I have NEVER used.  She says they will send it in to the right pharmacy, I confirm the right one with her.  I wait four hours and nothing.  Call the pharmacy, they haven’t received it.  I call the doctor’s office and leave a polite but terse message saying I was supposed to start this Tuesday, blah blah blah.  I get a call from the pharmacy an hour later, it’s ready.

I started it Wednesday night.  It knocked me on my ass.  So sedated, plus a screaming occipital headache the likes of which I have never had, and I have migraines and once had a concussion.  This was INTENSE.  Thankfully, I was so druggily sedated that I fell asleep fast.  Woke up the next AM with nausea, which is atypical for me even right now.  My “baseline” right now (when I’m not taking vomit-inducing zoloft, motility slowing mirtazipine, or haven’t given myself gastritis from salt tablets and fruit juice) is to wake up with an OK stomach that gets progressively worse as I put food into it during the day.  I had to break down and take a half an ativan for the nausea in the AM and another in the PM.  While the headache has eased up on subsequent doses, the nausea has gotten worse.  The sleep has as well.  The second and third nights on it, it sedated me but I woke up very early (like 4:00 AM) and stayed awake.  So that’s not fun.  It’s similar to my pattern on Gabapentin.  Oh and the lyrica is constipating me.

So here’s the icing on the cake.  I called my GI doctor on Friday even though I had only taken two doses at that point, but because we were going to check in at the end of the week.  She never called back. I’d have preferred to consult with her first for compliance’s sake, but since she can’t be bothered to return a frikkin call she told me to make, I’m just d/cing this drug myself today.  It gave me bad nausea last night and today I spent the first few hours out of bed feeling like I was going to faint.

I’m so done with her.  I hate finding new doctors, and finding new GI doctors is like extra hateful, but I will do it.  I know it’s difficult, I know I’m a complex patient, I know that I’ve pretty much exhausted all my options for medication for gastric motility.  I know finding a miracle worker is not going to happen.  But I am not looking for a miracle worker. I’m a realist.  I am looking for a knowledgable, creative, supportive ally in my fight to stay well nourished and to have some quality of life. She is not that.

Akathisia? I don’t even knowah!

Yesterday, I wrote about having found a term that seemed to describe my experience since increasing my dose of Reglan to 40 mg/day.  The term was “akathisia”.  I was nervous about calling my GI doc and my neurologist.

The GI call.  Went about how I thought it would.  She blew off that this continuing effect could be due to the Reglan.  I suppose that some of this is ignorance due to the fact that the articles about these effects of D2 antagonists (Reglan among them) do not appear in GI-specific journals so much as neuro, psych, and pharmacology publications.  You’d think a really good gastroenterologist would be on top of that, about a drug that has a black box warning and which she prescribes and increases rather often.  But see, there’s the rub.  A REALLY GOOD gastroenterologist, and while this doc I see is listed as a top motility specialist, I have not found her to be a really good doctor.  She worked me up, dx’ed me, but all along the way she kept forgetting what my main complaints were (to the detriment of my care sometimes, e.g. prescribing nortriptyline to “desensitize” my gut for pain and nausea, which sounded like a swell idea for someone with chronic diarrhea, except that I had told her that the chronic diarrhea I’d had for years changed nearly overnight several months prior into chronic constipation.  I didn’t tell her this just once, I mean constipation was a major topic of our discussions and appointments for MONTHS.  And yet she prescribed a constipating med, and was surprised when I ended up impacted and syncopal on my bathroom floor, and eventually in the ER).

She forgets dosages.  She cancels appointments only to reschedule them months later.  She runs so late for her appointments that you can’t plan to do anything else the entire day, and her office will not be up front about it and give you an honest estimate of how late she is.  You call and ask and they always say she’s on time, even when she’s not.  My last appointment with her was her second appointment of the day.  She was over two hours late.  She was not with the first patient for two hours.  She was late getting in.

So the GI call back last night left me in a bad mood.  I woke up feeling despondent, the old Deep Dark Despair, on top of the agitated anxious racing negative thoughts that are happening right now.  Not a good combo.  Took an Ativan.  The DDD is because if this doesn’t go away with SSRIs and Ativan, what then?  Is throwing an SSRI at it even the right thing to do?  And how can I trust my continuing care and management of my sometimes tricky gut to someone who is just so either checked out or in denial?  It leaves me feeling abandoned and scared.

But then a miracle happened. A young man called, (Dr. F) saying he was the covering for my neurologist (Dr. H).  So what’s going on? he asked.  I rambled.  I apologized for rambling.  I explained that I saw Dr. H only recently for autonomic issues secondary to Ehlers Danlos, and one of those issues is slow gastric emptying, and I’m on Reglan for that.  And that in late March my GI doctor increased the Reglan to 10 mg 4x/day (how much were you taking?  10 mg 2x) and that slowly over the months after I started getting these restless, agitated feelings, feeling what I guess was anxiety, but also with some leg restlessness that I thought was just a magnesium deficiency, then about three weeks ago it just sort of blew up and I started having this all the time, intensely.  I started to go on, and he interrupted me.  “Well I can tell you that sounds like something that can happen from Reglan and those medications that affect dopamine, we call it AKATHISIA.” he even spelled it for me.  He went on to say it is primarily considered a movement disorder but that it can come with emotional feelings or restlessness, agitation, anxiety, and depression.  I told him I had stopped the med but it was continuing.  He said “typically, it takes a few weeks to a month to clear up” but that if it continued, I can make an appointment with their clinic.  He then went over my med list, stopping at the Zoloft and said “how long have you been on that?”  Just about a week, I said.  “It can trigger or worsen akathisia, I’d consider stopping it for now, at least until this clears up.”

If I could have reached through the phone and hugged him, I would have.  “Um, I’m happy to try to convey this to my psychiatrist who prescribed that, but I know that sometimes its better if communications like this are directly between providers, is there any way I can put you in touch with him to discuss that?”  He said sure, gave me his email address and said that my psychiatrist can email him to set up a time to talk (no private info over email).

I’m also going to call next week and see if there is a note on the phone call that can be sent to my primary and GI doctors.

And I think I should send this guy flowers or something.

Well that didn’t work out so well

We tried the SSRI.  Zoloft to be precise.  I had been retching when I got upset, or moved sometimes, despite not having much by way of nausea…this was prior to starting the Zoloft.

After starting the Zoloft?  Retching and nausea and vomiting.  After increasing to 25 mg of the zoloft?  Crushing nausea that makes you want to die, vomiting, can’t eat, awful, can’t keep down what you do eat.

So I saw the shrink on day two of that awful 25 mg of Zoloft and he said that we can cut it back to 12.5.  I’m wondering now why not just cut it back entirely.  I was hoping it would help, I’m not sure it will.  And given what I’ve been reading on Reglan and it’s side effects (tardive and otherwise), I’m wondering if the Zoloft might do more harm than good.

Harm:  It’s making me nauseous even at 12.5 mg.

Potential Harm:  In the case studies I read, it is associated with return/increase in some of the neuropsych Reglan effects, specifically an interesting one called “akathisia”.  Never heard of it?  Neither had I.  I think I read it in the list of “movement disorders” that Reglan can cause.  Here’s an article with a set of case reports on akathisia, Akathisia: overlooked at a cost.  In the discussion, you’ll note that both dopaminergic drugs and SSRIs can cause it.  So if this is what’s going on with me (and oh it really does sound like it fits the bill), taking an SSRI to treat it is perhaps not the best idea.

So after researching this akathisia thing, I called my GI doctor and my neurologist.  I’m nervous about both calls.  GI because I just always am, talking to her is a chore.  She’s going to hear about the nausea and suggest putting me back on Reglan, then ask if the psychiatrist said that the reglan can cause this.  She’ll discuss “neuromodulation” again, which means (surprise!) more drugs.  And then finally we’ll discuss a feeding tube.  Here are my answers to these presumed queries:

No, I’m not going back on the Reglan.  I really feel that it played a significant factor in what is going on right now with my neuropsych symptoms, and they are scary and dangerous and completely debilitating.  So no to Reglan.

Yes, he said he’s had patients who have taken it and have not had this but he said Reglan can do this.

I am reluctant right now to add another medication into the mix.  Tell me what this med is meant to do, what the side effects are, is it likely to make anything I currently have worse?  Add something new?

I am eating about 600 calories a day if I am lucky.  Now that I’ve reduced my dose of the Zoloft to 12.5, while I am still very nauseous and it is not helping my appetite, I am not actively throwing up as much…just dry heaving mostly.  But even with this “progress”, I am not getting more than 600 calories due to ridiculously low appetite (which I think is an enduring side effect of the Reglan, it started when I was still on it).  I have lost a lot of weight since this started, I am now down to 120 lbs.  You mentioned a feeding tube last time we talked.  I’d like to set criteria for that.

I’m nervous about talking to the neurologist because I don’t know her that well.  And she seems kind of, glib.  What if she’s like “what the fuck are you asking me for?”  She didn’t prescribe the med.  But I guess the answer is I’m asking her because she’s my neurologist, and because I’d like her opinion on whether this is some effect (tardive or acute) of taking a D2 antagonist for way too fucking long.  She’s not only MY neurologist, but she happens to be a specialist in parkinsons and parkinsonian diseases, as well as run the movement disorders clinic at the particular BATH where she’s on staff.  So I figure if you’re gonna ask a neurologist about neuropsych consequences of a D2 antagonist, why not go to one who kind of specializes in dopamine?  Why not.

But how to say all that.  Erg.

Because it’s like “hi, can you tell me if it’s this drug or if I’m just completely and suddenly insane?  Thanks!”  Doctors must love being in that position.  So I wait here today with some trepidation for my return calls.  The GI doctor MAY call back tonight, she has a piss poor track record.  The neurologist, I don’t know, this is the first time I’ve called with a question.  I was told it would be given to Keith, her nurse.  So we’ll wait and we’ll see and in the meantime we’ll take our Ativan because my god it is the only thing that helps.

Been a while.

I haven’t even looked back to see when I last posted here.  If I had to guess, I’d say this time last year?  That was when all the shit hit the fan, health-work-life wise.  Let’s see, the cat was sick, I was out on leave for vertigo while my boss was on maternity leave, which she started immediately after she and I had a falling out over her wanting me to do a job at work that I was having a tough time doing.  My disclosure of that was insufficient, she sent me and the whole office some pretty pissy emails around that, including a passive aggressive one to me rescinding support she had promised in the coming months, leaving me to do a job that she knew I couldn’t do on my own.

This time last year, I was waiting for the other shoe to drop.  It did.

While my boss was out on leave, she was nevertheless in communication with everyone else in my office, everyone but me.  She went to the conference I missed (vertigo, last June), and was mad that I wasn’t there.  How do I know?  She cut me out of a meeting that was in my area, that had been requested with me initially and which I had opened up to her and another member of our office.  She just -snip- stopped cc’ing me in the middle of planning.  I found out later in June that the planning had continued without me.

She was about to come back from leave and it turned out she had to rush to do our employee evaluations, they were using a new process.  Ok, so she sent me and my coworker emails telling us to send in the metrics we thought we should be evaluated on.  I did.  She ignored it, within moments of my sending it she sent something back to me that was totally different, and which…and here’s the rub…included the job I had told her in April that I couldn’t do.  Even got an official accommodation around it, but they wrote the accommodation so specifically that it left her wiggle room.  And wiggle she did.

I ended up leaving my job.  I complained to HR, to my boss’s boss.  I got a deep lack of support.  The idea of going into the Fall semester knowing I no longer had support, knowing my boss was now out to get me again (and please, I’m not being dramatic, she was a very vindictive and tantrumy type….the last time she was this mad at me she had revised my job entirely and put me on an attendance plan, instituted a policy that I had to attend every departmental social event, no I’m not making that up….it was in my HR file…she yelled at me and stomped around the office for weeks.  It was terrifying for someone with PTSD, struggling to work full time with serious health issues).

So I left.

And it’s been nearly a year.

And I’m having anniversary effects.  Because this was a really bad time of year last year.

I’d like to say that this year has been a nurturing calm one full of recovery and self discovery. That’s not the case. I’m depressed, officially now it seems.  It’s not like my health problems went away, but now I don’t have to drag myself to work.  Which is good, because it was killing me, mentally and physically to do that.  But now I have quite a bit of unstructured time.  When I feel very bad, this is ok because I need that time to rest and recover.  But occasionally, I’ll have a stretch of days or even weeks where I don’t feel VERY bad, or where I feel mostly ok aside from a few acute issues (like nearly passing out in the bathroom after eating last week…makes me thankful I’m not working) and I don’t do well with unstructured time.

I’ve tried structuring it but it’s not like I have boundless energy for activities.  That’s the issue, if I had that energy or the guarantee that this day or that wouldn’t be a sick day, I’d be working by god.  But I don’t, so I can’t work.  But that also means it’s hard to make plans, and to keep plans.  For example, I tried going to Chinese New Year this past Winter with a woman I’ve been trying to become friends with. A fluctuating round of nausea (intense, soul crushing nausea) reared up and halted that at the last minute.  I was so disappointed.  I cried.  I don’t cry often anymore about my health, but there are some things that’ll do it.  A new and frightening symptom, a symptom that suddenly gets and stays worse.  Having made plans finally after the snow from one of the many (many!) storms we had had receded a bit only to have to cancel them, knowing I’d soon have to hole up for another two or three record storms.  That did it.

So why am I officially depressed?  It’s been a year of this: It’s been lots of doctors’ appointments and you know how I hate those.  It’s been applying for disability, an inherently degrading and hopelessness inducing process which also btw means you can’t take doctor breaks.  if someone sends you to a specialist, you have to go or it looks like you don’t care about your health, aren’t taking it seriously, so why should the disability people?  They apparently don’t know about doctor fatigue, both the doctor and patient side of it.  It’s been too much unstructured time but not enough health to make and keep plans to structure it at all.  It’s because it was a brutal winter here near big historic northeastern US city.  It’s because it’s June again, and this time last year was so awful.  It’s because the last five years at work have used up all that I had to give – and before that was grad school and my division head telling me that he didn’t think it would be “fair” to even consider health accommodations.  It’s too many years of pushing through and past and down and going going going to get things done – and now that I have space to stop and breath, I see that I have nothing left for me.  No social life, no chance for one, no ability to even do a great amount of volunteering (I did try in the Fall – I taught a class a the local public library, but health problems meant I had to cancel and reschedule three out of only 6 classes.  This Spring, they decided they didn’t want me to teach a class again, not surprisingly – I’m tutoring but no class).

I’m surviving right now, but that’s about all.

nightmare

Browsing the news this AM I ran across this story about Justina Pelletier, a girl with a “medical mystery” being taken into state custody by Boston Children’s Hospital and forced on to a locked psych unit rather than given the medical attention she was referred for.  As someone with a complex medical history and more than one “controversial” diagnosis, I am shaken.

The themes are so familiar to me:  how providers handle disagreements over “controversial” diagnoses; the chicken and the egg etiological conundrum posed by the apparent stress and emotional strain that is seen in people (and families of people) with these physical symptoms – i.e. “is the emotion causing the physical symptoms or the physical symptoms causing the emotion?”; the dehumanizing effects of encounters with medical professionals who seem to operate with a personal deficiency of empathy and/or who have no professional training or model for how to muster and apply it in a medical conflict scenario.

Despite having some appreciation for how the medical staff might have come to wonder if their patient had been “over treated” and mis- or over- diagnosed, could not help but think that they moved from suspicion to conclusion with what in medical timelines is lightning speed.  Need to see a specialist because your systemic symptoms might be caused by a form of cancer or a rare autoimmune disease?  That’ll be 6 months.  Need to invalidate a patient’s symptoms and void another doctor’s diagnosis because it doesn’t fit what you know?  Takes days at most.  What facilitates that transition, and in fact I think what engenders it in the form of feeding negative judgement, is the bad blood that arises when there is a clash between the way that medicine is taught and the way that complex medical ailments work.  It is taught as a science, and in our western tradition this means adherence to the tenets of simple linear cause and effect models only, an emphasis on what can be boiled down into a textbook, a system-wide lack of admission of the limits of knowledge, and a deeply held and unexamined belief that all medical encounters must be dichotomously defined as active agent provider and passive object patient.  When aspects of real world practice shake those tenets,  all hell breaks loose.  It is a nightmare.

Excerpted from “A medical collision with a child in the middle:  Justina has a metabolic disease. Or does she? Her parents and Children’s Hospital deadlocked, she was placed in state custody.” By Neil Swidey and Patricia Wen, Globe Staff, December 15, 2013

….These cases are rare, but not as rare as one might think. In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.

It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a “parent-ectomy.”

Typically in these cases, the child had been diagnosed elsewhere with one of several relatively new disorders that are complex, poorly understood, and controversial.

The child’s medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child’s problems were more psychiatric than physical, that sparked the medical team’s concern, paving the way for the call to the state child-protection agency.

Read the full story, part one of two.

And here’s the irony.  As a child, I was seen at hospitals and even by providers mentioned in this article for GI complaints and fainting.  As a child, I was living in a very abusive home.  Did the hospital staff or my doctor pick up on any of that at all?  Nope.  I was told by my GI doctor to “try to reduce stress” in my life…as a child.  At no point did DCF/DSS get a call to look into whether the stress in my life was perhaps due to something very wrong and very out of my control.  Apparently, since my mother didn’t push the doctors too hard to come up with a unifying diagnosis for my problems or pester them when their treatments failed to control my symptoms, she didn’t trigger any alarm bells.  To me, this is the perfect accompanying piece of evidence that what can trigger conclusions of child endangerment/abuse is not genuine, informed concern as much as a desire to punish pushy people who disagree with doctors.

lock out

I recently posted about the accessible door to my building being locked for an event.  I have since found that the security guards in my building had started locking the door routinely in the evening.  That is, the building is still open, services in the building are still accessible for anyone who doesn’t need that door, they are just not accessible for anyone else because the guards locked them out.

Why?  I asked.  Of course I did.  The guard told me “They told us to start locking it to save energy, but now that I know you need it I won’t lock it until I see you leave.”

Um…..no.  So I wrote to the building manager, who initially thought I was saying the accessible door was locked when the building was locked (?!) but said he would look into it once I explained that I meant only the accessible door was locked during operation hours.  A few days later, I checked back in. I was told that the building had no such policy but that one of the guards had proposed that they start doing locking the only accessible entrance to the building after the guards noticed that “too many non-disabled people were using that door….” and they wanted to save energy.

Savor that for a moment.  Let it sink in.

This isn’t the first time I’ve seen accessible come up against “environmental”.  In the summer, the powers that be at this same building decided they would set the air conditioning system to less cool “to save energy” and would shut it off at 5:00 because “no one is in the building then in the summer”.  This was sent out just after an email about employee summer hours, where you can opt to work late 4 days a week then have the 5th day off.  So much for no one in the building after 5:00.  The air conditioning email was peppered with environmental rhetoric, but it was clear that this was about money.

I’ve encountered it more casually too, a fellow grad student once chastised me for taking “the lazy box” (elevator) instead of the stairs on a day when I was in so much pain and so dizzy that I had barely made it in to school.  I guess that one wasn’t so much about environmentalism, but about fitness. Both appeals (to environment, to fitness) involve people assuming some higher ground to justify the ignorant and marginalizing behavior.  Both involve people making groundless and hurtful assumptions about other people’s abilities and motivations.  They are similar in that they are both justifications for discriminating against people with mobility impairments.  And while people have the right to hold their ignorant views, they don’t have the right to impose them on everyone.  They don’t have the right to lock the fucking door.

Dr. Dumbass

Oh, someone wins for clueless doctor in the news.  This one may top my top ten.
Mid-South Doctor Gives “Ghetto Booty” Diagnosis
From WERG, Channel 3 Memphis
Posted on: 4:04 pm, July 12, 2013, by Candace McCowan, updated on: 06:49pm, July 13, 2013

A Mid-South woman has filed a complaint with the Tennessee Department of Health after she said the doctor she went to see for back pain gave her an insulting diagnosis.

“He said ‘I know what the problem is. It’s ghetto booty,’” said 55-year-old Terry Ragland about what she was told by Dr. Timothy Sweo in April.

…. “I think I blacked out after he said ghetto booty. I think my mind was just stuck on the phrase because I couldn’t believe he said that,” said Ragland.

The doctor’s response to the complaint: “I was trying to take a technical conversation regarding your lower back and make it less technical.” and “I think I do understand why her feelings were hurt but I don’t understand what’s offensive about it,” said Sweo.

The patient’s response to the doctor:

“It says to me that he doubts what type of intellect I have, how intelligent I am to be able to understand what he conveys to me in a medical term,” said Ragland.

As Dr. Evil would say, 

freedom not to choose

I recently had occasion to revisit Christine Miserandino’s excellent essay, The Spoon Theory.  Last night, after literally months of chasing his brother down to make plans for their dad’s 70th birthday, my husband finally had a talk with his brother about said plans.  A real, concrete talk.  This did not go well.  Post talk, my husband and I were sitting on the couch feeling drained, pissed off, sad, and well, just all kinds of bad.

Back up.

My brother in law had wanted to do an all out big hurrah for his dad’s birthday.  Despite my brother in law’s wife being pregnant with twins, a much sought after and difficult to attain pregnancy, he was talking trips to Europe in April.  April would have been four months after the kids were born.  I recall as recently as late last Fall, when his wife was huge with impending kids, he was still talking this nonsense.  “If he goes, if he goes ahead with this plan and leaves her alone with those babies to run off and have a booze and cigar fueled tour of Europe, he may as well pack ALL his shit because it’s gonna be on the curb when he gets home,” I told my husband.

Flash forward a bit, post babies but still winter.  Still months before dad’s birthday.  My brother in law realizes either than he doesn’t have the time or the money to make this trip.  Good.  Finally.  Sense!  But still, let’s go to a resort in the US!  Weekend at Bernies style!

I got sicker.  Brother in law got harder to get in touch with.  The time drew nearer.  His own plans just for his kids’ christening took forever to gel, an event that was roughly scheduled around their dad’s birthday.  Ok, so putting off the birthday event.  Doing it in the summer now.  And maybe more local.  My husband really tried to get together with his brother on this.  I planned to take time off so I wouldn’t need to try to get my sick ass into work on my own and use up a day’s spoons just in my commute.  “Just let me know when!” I said.

Vacation planning time came up at work.  At the time, my husband had only managed to nail his brother down to “it’ll be one of two weekends in July”.  I tried to plan around it, but it was tough.  I had to pick time off and we still didn’t know when it was happening, except that we knew it would involve a weekend.  Ok, so we figured they come in Thursday (and this was discussed with brother in law), go golfing locally Friday day after my husband gets me to work.  Then Saturday they head off to some golfy-area and stay at a hotel Saturday night, golfing all day Saturday and early Sunday.  Drinking, smoking cigars, etc.  Great.

Except that this isn’t what my brother in law “envisioned”.  Notice I didn’t say “planned” because people like him don’t plan.  They can’t be bothered to make the choices that planning entails.  When you are merely envisioning, you can have endless opportunities, possibilities.  When you plan, you will systematically eliminate all but one set of those possibilities, eventually destroying them.  Whole worlds of possibilities are gone when you finally commit to a plan, what is left is only that one potential world which you have committed to trying to attain.  My brother in law cannot handle this process.  He is a dreamy little dreamer, who is in total denial about his dreaminess.  I can handle dreamers who know they have a soft gooey center surrounded by a light flaky crust.  I can’t handle dreamers who think that they live in the real world, who drift through their days fueled by the privilege of not needing to choose, enabled by the people around them to continue to entertain countless, limitless possibilities to the consternation and detriment of anyone near them who actually needs to know what the eff is going on.

Yesterday, my husband sent my brother in law an itinerary.  Oh boy, not a thing to do to a dreamy little dreamer like him.  That got his attention.  Not that he called my husband.  No, my husband still had to cyber-stalk him all day to get a reply.  Finally, they spoke.  Brother in law revealed his massive disappointment in the plan my husband had concocted based on the limited and late input he got from and about my brother in law.  Input like dad telling my husband that brother in law actually wanted to come up Wednesday to Saturday because he had made work travel plans for the following Sunday or Monday.  Again, plans for {this or that}.  Not plans for this.  Or plans for that.   Last night, dreamy dreamer revealed his boozy smokey vision to my husband, communicating that he didn’t think that they should stay here for any part of it because they wanted to kick back, let loose, not worry about me and my problems….<needle scratch> 

Gosh darn it, cripple problems are no fun!

Not that those problems would go away, especially not if he took my husband out of the equation for work days that I now had to work because my brother in law couldn’t be bothered to commit to even planning let alone a plan back when even an outline of a plan would have given me the tools I needed to make my own plans.

This boy who pretends to be a man is one of the people I was thinking of when I wrote about blithering optimists.  And he’s been a source of actual strife for me in my sickness any time the practicalities of his sphere overlaps with mine.  I told my husband last night that they’d better plan to stay somewhere because I don’t want him in my house.  Brother in law has made it clear that if he is forced to stay here, he will either not respect my constraints (like needing to go to sleep, stretch my legs out on the couch, or eat when I need to) or he will respect them but with heaping helpings of resentment and disdain.  I don’t need that shit.  Apparently I can’t keep it out of my life, but I can keep it out of my home.

For a while now, I’ve been thinking of writing a “dear family and friends” letter.  My previous attempts at a narrative have ended up in 5 page single spaced .5 margin word documents that still are incomplete.  But those didn’t have a purpose other than cataloging, chronicling my illness.  I realize I’d have  to think about the point of this, because if it’s to communicate to friends and family what it’s like, if it’s to help manage their expectations in advance, then I need to be aware that there are people like my brother in law for whom it may just not matter anyhow.  We stand at opposite poles of the planning continuum and unlike Christine’s friend in her essay, my brother in law has not asked what it’s like for me to live like this and may not give a crap.  So if I do write this, I will write it with that audience in mind, with him standing in for all the not giving a shit people in my life.  And I will assume that if I choose to write it, it will be at least as much an exercise for myself as it is a letter to them.

Thinking of everything

It is exhausting.  You know what I mean.  You think of everything when you need to go to work.  When you need to travel.  When you need to attend a family event.  When you are making holiday plans.  When you are considering what to eat for dinner.  When you have a chronic, painful, energy sucking, unpredictable, evolving illness, you deliberate, consider contingencies, weigh hypotheses about the factors involved (oh god help you if those factors are heavily regulated by other people!)

I had two occasions to bring this up explicitly this week.  The first was while talking with a good friend with fibro, chronic fatigue syndrome, RSD/CRP, and debilitating functional intestinal problems is starting a new job and is trying to advocate for job preserving accommodations now….before the work starts.  You know, the way you should do.  One of the accommodations she is asking for is the ability to coordinate “side project” assignments and work through her direct supervisor and in advance.  I.e. no “hey can you just do this thing by next week?  ‘K, great!”  Or “why don’t you go ahead and come in on the weekend” (to quote Office Space).  She’s worried she will be seen as “not a team player” if she constantly has to say no to these assignments and doesn’t disclose her illness.  And that even with disclosure, people don’t understand.  We talked about how other people do these things, “I think they say ‘yes’ to everything, over book themselves and end up dropping the ball a lot…then scramble at the last minute and do like three all nighters to fix it and not come out looking like a screw up.  And we can’t do that.  We plan.  We make plans for plans and consider every conceivable process and outcome and if it seems like we can’t do it given the constraints in place including not being able to do the three all nighters if we drop the ball, we say ‘no’ and people think we suck.”

The other time was with a student I work with who, after I described what I had done to prepare her digital book for her to access with a screen magnifier and reader, said “Wow, you think of everything!”  She has a chronic illness to, and so I felt like I could say this to her.  “Thank you, it helps that you let me know what works for you.  And the other part is living with a chronic illness.  You learn to try to work ahead and plan for everything…”  “God yes,” she said, “I’m learning that now.”  I hope I didn’t sound patronizing when I told her that it takes time to figure out how to do this gracefully, that I’m 42 and I still am working on it.  I said it because she’s an over-booker, and I’ve seen her both in the throes of it and in the end of the semester outcome.  I am not blaming her, not (as my last boss would have said) even thinking that she “makes herself sick”.  But I see the struggle from over here in my remote perspective and I wanted to let her know that over time you do get better at recognizing that you need to do this.  Then you can work on refining it.

It is exhausting.  It can be for me at least.  Fortunately, I was always a somewhat deliberate person.  This is not to say that I was totally without impulsiveity.  I miss what I did have.  But I know I always came across as a sort of stick in the mud, the one who would ask “hey but how are we going to get home?” and who would let it bug her if I undertook a plan without these details in place.  I guess I always knew that things can and do go wrong.  I’m going to have to “thank” my family for that one.

50s housewife illustration with absurd list of chores

The blithering optimist. There’s nothing she can’t imagine doing!

The flip side of this is what I call the “blithering optimist”.

I’m not knocking positive thinking.  but while I respect realistic positivity, I have barely more than contempt for blithering optimism.  Do you know a blithering optimist?  My favorite blithering optimist quote is Dr. Evil:  We’ll just assume it all went to plan!