Sad today

I didn’t wake up with racing thoughts today, but I woke up sad.  I cried in bed several times before finally getting up, asking my husband to hold me to comfort me some through it.

It’s been a really tough couple of months, and the return of the anxiety has been hard to take.

I got through yesterday ok though, I managed to not take any ativan even though I woke up with nausea.  It resolved as the morning went on.

Today, I’m sort of on the edge of anxiety, I can feel it tugging at me in the background.  I know if I had something to do today, something I could do and that was more engaging than some solitary pursuit, I would feel better (emotionally) about the day and have some sort of hope that I won’t be spend the day alone fighting bleak thoughts and fear.  My stomach’s not too upset this AM, but I feel weak, dizzy, and my vision is spotty even just sitting up.  I’m sure my BP is way down.  I don’t even want to check it.  Too depressing.

My GI doctor called back yesterday after a third call.  She wants to do a Ph study and an esophageal manometry test. I explained how the last esophageal manometry test went when I was a teen…i.e. the doctor couldn’t get the probe down my nose because it’s too narrow up in there, so he ended up putting it down my mouth.  I got the distinct impression from my current GI doctor that dropping the probe down my mouth would not be an option.  “We’ll try it…” down the nose, was her comment.  Oh that and take a (whole) ativan before I come in for the procedure.  Um….okayyyyy.  Obviously she doesn’t get that it’s not just a matter of upset, it’s a matter of anatomy (which leads to pain, which leads to upset).

Still beating my head against the wall with trying to get in to a new GI doctor.  Still calling every morning and getting the news that there are no cancellations.  I wonder if I should call later in the day?

A friend is supposed to come over later in the AM for coffee/cards.  I hope that goes ok, I hope I stay well enough to do it.  I really could use the company and distraction.

I was planning on starting/trying the evening primrose oil and flaxseed oil today. I got them Monday to try to help supplement my way out of the essential fatty acid deficiency my labs showed back in June (and that was only one week into the starvation diet I’ve largely been on since then).  I worry about trying them…side effects include upset stomach, abdominal pain, nausea, and diarrhea.  So basically, more of what I already have.  Errrrg.

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Stopping Lyrica

Last night, I did not take the Lyrica.  I had been planning on doing that anyhow, but my GI doctor finally called me back late yesterday afternoon.  We discussed it.  I think the most convincing thing for her was the constipation the lyrica was causing.  Yeah, never mind the headaches, and daytime fatigue, nausea, and pre-syncope.

So I’m off that.  She asked me if I was adhering to a gastroparesis friendly diet.  Um, I had been.  Now I’m on a (low fat, low residue) liquid only diet, and I can barely tolerate that.  I sometimes wonder if she has a bit of early onset dementia, or maybe if she’s an alcoholic.  Or just can’t be bothered to chart, so that when she calls me back and has my record open in front of her (she always mentions it so I know she does), she could see things like what I said to her the last time we talked.

I re-explained that pain is not my most limiting GP symptom.  I explained that nausea is one but that the nausea comes only if I push past the other earlier (severe, limiting) symptoms of early satiety, bloating, reflux/regurgitation, and wicked heartburn.  She latched onto the heartburn.  “Have we done a Ph study on you?”

Uh, no.  No you haven’t.  And you haven’t done an endoscopy in over two years despite my symptoms getting worse even on 40 mg of Reglan a day, and despite the fact that I have new (as of last Fall) difficulties swallowing, which I reported and which you ignored.

Honestly though, if I’m going to change GI doctors soon, and I really hope I am, I’m not sure having my current GI do these studies is the best plan.  I’d rather have them done by someone better.

I woke up with no nausea today, which I am attributing to having not taken the Lyrica last night.  My bp is still a little low, and I still don’t know if that’s the lyrica or something else.  It’s confounded by all the fucking meds I’ve been put on (and subsequently, rapidly discontinued) in the last few weeks to deal with the side effects of the Reglan and the worsening GP symptoms after stopping the Reglan.  There was a little window last week where it was better, sometime between the mirtazipine/iberogast/beta blocker clearing my system and day two of the Lyrica.  Now, it’s dropping back into the low 70s in the evening, and I do very much feel like shit when it gets that low.  I know, I have a low BP at baseline anyhow, but not that low.  Here’s how my BP works.

  • Feeling good or stressed:  95-115/55-70
  • Feeling fatigued or easily fatigued:  85-95/48-55
  • Feeling ill, dizzy/lightheaded:  78-85/45-48
  • Feeling presyncopal:  <78/<45

This morning’s BP (several hour, a half liter of water, and one cup of coffee after waking) is 77/55 (hr 67).  Blurg.  I’m hoping this is a lingering effect of the Lyrica.  Tried researching hypotension as a possible side effect and all I got was the vaguely worded side effect of “blood pressure changes”.

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.

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.

thwartful rebuffery

My day yesterday.  Whew, it was a day.  Going into Friday without an appointment at the very special specialist’s meant the end of another week without any answers or hope for treatment in sight.  I knew that if that’s how the day played out, my spirits would be down.  What I didn’t know was that I’d be in the office by myself fielding a panoply of lengthy calls from needy parents with strange needs, that I’d get the two pieces of software we ordered over a month ago that apparently needed to be installed right that minute for billing reasons, and that I’d be juggling truly irksome emails and calls from two big corporate sellers who are trying to tell our institution that their heavily marketed but massively sub-par products are really ok, just fine, and fully compliant with the federal and state laws my office is responsible for adhering to….ah and faculty.   Can’t forget the faculty in all this.  They’re sprinkled throughout the scene like little mischief making gremlins, screwing this or that up royally and then copping a hell of a lot of attitude via passive aggressive emails.

Oh god and the building.  I forgot, how could I? that the building management decided that although the heatwave and “energy crisis” had passed, they’d recoup a little cash they lost in cooling bills the last few weeks by dialing back the HVAC to the point where it was 80 degrees in the halls, the restrooms, basically anywhere that didn’t have a window unit going full tilt.  And to top it all off, the shut off all power to the building at 6:00 PM.  Unannounced.  My day ends at 6:00 PM, I’d been planning on working a little late to be sure I got everything done that I hadn’t gotten done while dealing with the stuff I mentioned above…so at 5:55, I find out from a security guard that they’re shutting everything down at 6:00.  “Elevator too?” I ask, slightly panicked.  “I don’t know…you got a cell phone?” he asks as I am frantically pushing the button to call the elevator down.  See, I was in the lobby when I heard this.  My office and all my stuff was on the 7th floor.  Five minutes to get up, get through two locked doors, grab all my shit, save my work to a flash drive, and get back down or risk getting stuck in hot elevator or taking hot stairs down from 7.  It was like a scene from an action movie, except in this movie, the hero is a broke down cripple with the constitution of a snow flake.

After the mad dash, I had to wait 45 minutes for my ride home in the blowing rain on a stone step where kids stand and smoke and spit.  Because it was the only place to sit, because I had to sit because I can’t stand for 10 minutes let alone 45, because I had made pick up plans in the absence of knowledge that my building would go into lock down a half hour before I was planning to wrap up.

Oh…and the doctors.  Back to the doctors.  Did I get an appointment?  No.  Moreover, I was thoroughly rebuffed.  Called BI-BATH’s autonomic people in the AM, oh yes, we have your results right here.  Did you want us to do something with them?  (holy shit) Called primary care.  Yes, we got the results, we faxed a 16 page referral last week but can fax it to them again (yes please).  Called autonomic lab back, the woman who does scheduling is gone for the weekend.  Then called the turd doc and got a voicemail greeting letting me know that his scheduler is out until Tuesday.

My mood has been better. It’s been worse too, but what I can sense right now is that I am having the “prodrome” to an amazingly, spectacularly bad mood.  I’m at the top of the slope, teetering and about to go barreling down into the valley of “fuck you, fuck him, fuck her, and fuck all this shit”.

And you know what I really want?  What would make it all better?  To go out for pancakes.  Blueberry pancakes with bacon and homefries.  Yup.  That’d do it.  I’m sure of it.

paging doctor, um…

Had to page my GI doc at Big Granddaddy of all BATHs three times this week to get a call back.  Who dropped the ball?  Well it depends who you ask.  The predominant answer seems to be “not me!”  A very stressful call with the BATH switchboard staff last night.  So much so that I DID break a stress/anger sweat, got dizzy and faint on the phone with GI doc after, then spent a half hour shaking.  Then hit a big wall and slept like I was drugged for nearly 12 hours.

Jeezus.

So in my attempts to get ahold of GI doc this week, after paging Tuesday and Thursday, on Friday I faxed a status report to her office with a “hey call me, Girl” note attached.  I use the fax as the last ditch effort.  I know they read the faxes.  For anyone who has a complex medical thing to discuss with their doctor, if your doc doesn’t use (at all or reliably) email, then feel free to steal this trick.  It works well, providing you don’t over-do it.

When we did talk, she told me that she got my note and thanked me for it.  I’m better able to express myself in writing, but the added bonus of having sent this is that this detailed one page statement of what’s up for me is now going into my medical record.

In the fax I sent to GI doc, in addition to her requested update on GI meds, diet, lower and upper GI symptoms, and weight, I included a paragraph called “referral”.  In it, I state that I want her assistance getting a referral to a very special specialist to assess for neuropathy.  Here’s what I wrote:

Referral:  I’d like to ask for your help in getting an appointment with a doctor who can evaluate for – and, if needed, treat – autonomic neuropathy.  I have a history of symptoms of autonomic dysfunction (fainting starting at 8 years old, an abnormal tilt table test in June 2010) which have increased slowly over time and which I am certain have worsened in the last 8 – 10 months.  Compared to this time last year, I have more dizziness, more episodes of very low blood pressure (80s/40s), and I recently discovered that I am not sweating much (sometimes at all) in hot environments.  I sweat last summer.  This summer, I ironed a shirt in a 95 degree room and didn’t break a drop of sweat.  I am using ice packs, spray bottles, and just purchased a cooling vest because I have been feeling dizzy, frequently near fainting, and having chest pain even while resting in the recent heat.  My primary care has expressed concern about causes for the gastroparesis, especially in the context of my other autonomic symptoms.  He would like me to see a neurologist who specializes in “inflammatory neuropathy”, “peripheral neuropathy” or autonomic dysfunction.  I would like to see someone at (Mega-multi-BATH network) for insurance reasons but my primary care is not very familiar with (MM-BATH) groups.  Do you recommend anyone and can you facilitate my getting an appointment?  I find that (MM-BATH), (Big Granddaddy of all BATHs) especially, is quicker and more efficient when processing “in house” referrals.

And so after she and I discussed the GI meds and symptoms follow up stuff, we turned out attention to the referral.  She agreed that this was a good idea and said she would be happy to help.  So yay!  This really is a big yay since the very special specialist I tried at BG-BATH was like “we require a referral, but if your referring doc is outside MM-BATH network, you need a note from the pope asking us to see you and why, then you wait 2 weeks while we mull it over, then we schedule you for next March.”  If the referring doc is in MM-BATH network, they just click a button on a computer screen and done.  GI doc said she’d email the very special specialist I wanted to try to see, so again, yay.

In the meantime, I’ll ask PCP to write up a note anyhow since he knows more about what’s up outside of the GI context although I think the gastroparesis plus the abnormal tilt test alone should be enough to win me a referral, I like to hedge my bets.  Doctors have taught me to do that.

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!