popovers and pelvic instability

Yesterday was a work at home but take the kitten to the vet in the middle of it day.

I got very little work done.  Some of this was due to the kitten, and some was due to the fact that I’ve been putting off routine housework, cooking, and self care for work.  Or for work related energy.  The work I did do involved massive shoulder pain (this is what happens when my staff is cut, too much for me to do alone) so I decided to call it and take care of house stuff.

I managed to get through sweeping and vacuuming ok – different shoulder motion than typing and mousing and the pain is very much an over-use injury attached to keyboard work.  Then I moved on to making my pumpkin pudding that I didn’t have time to cook over the weekend.  I didn’t have time because I was just exhausted.

Then I got ambitious and decided to do MORE dishes.  It was the dishes that did it.  I turned to put something away, with my feet and legs fixed forward rather than repositioned to be at the same angle as the rest of me, and “pop” went something on the lower left side of my pelvis.  Crap.  Laid down with the ice pack, now ice on the pelvis and heat on the shoulder.  But I really wanted to try making pumpkin popovers.  I had made plain ones a few weeks ago and they were ok but I thought I could do better.  I took this recipe for low fat popovers and modified it.

  • 1 egg
  • 2 egg whites
  • 1 cup all purpose flour
  • Heaping tsp ground cinnamon
  • 1/4 – 1/2 tsp ground ginger
  • Dash ground nutmeg
  • Dash ground clove
  • 1/4 tsp salt
  • 3/4 cup lowfat milk
  • 3 and 1/2 tbsp pumpkin purée
  • 2 tbsp sugar

Heat oven to 450ºF. Spray 6-cup popover pan or six 6-ounce custard cups with cooking spray. (I used nonstick cups very lightly greased with butter.) Place all ingredients in blender in order listed. Cover and blend on medium speed about 15 seconds, stopping blender to scrape sides if necessary, just until smooth. Fill cups about 1/2 full.

Bake 20 minutes. Reduce oven temperature to 350ºF. Bake about 20 minutes longer or until deep golden brown. Immediately remove from cups. Serve hot.

Notes:

  • As usual, I didn’t think to measure and record my modified ingredients carefully, just eyeballed them and hoped for the best. So pumpkin, spices, & sugar amounts are estimates.
  • Use room temperature ingredients and preheat popover/ muffin tins for more “pop”.
  • You can use regular muffin tins. Just less pop.

Even in my ill-tempered oven, they came out pretty good.  photo of cooked pumpkin popover
Not heavily pumpkiny, but I think more pumpkin would weigh them down.  Next time, I’m using more spice too.  A nice treat for sitting on the couch in my now clean living room with ice and heating pads and kitties.

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neuro today, gone tomorrow

I saw the new neurologist yesterday.  I saw him once before, this is someone who was trained in autonomic function and who has opened one of the only autonomic function labs at a hospital in my area.  Yesterday’s appointment was a follow up to talk about blood test results (negative) and where to go from here.  Oh and to let me know that he’s taking a leave for at least a year because his mother is sick.

Crap.

I liked him.

This is the second neurologist I’ve had since moving back to Big Historic City in 2009 who has left his practice.  He’s trying to do it right.  He says that the practice is going to try to find someone with autonomic dysfunction training to replace him and that he’ll be here until the end of April, asked me to check in by phone or email before then.

So what’s new from the appointment?  Other than “Good bye new neurologist?”  My bloodwork was negative for Antiganglionic acetycholine receptor antibodies and antineuronal antibodies.  That’s good, it means it’s unlikely that it’s cancer and less likely that it’s autoimmune autonomic ganglionopathy.  Then what is still on the table, Mr. Patient asked my soon to be former neurologist.  The most likely is the Ehlers-Danlos, other than that, there’s also mitochondrial disease – it’s hard to diagnose and not very treatable.  Well, better the devil I know, so I’m going with Ehlers-Danlos.

One interesting thing that did come of this appointment.  Sleep.  I don’t sleep well anymore, had a sleep study and I saw it as relatively useless since it just said what I knew going into it:  I don’t sleep well. I fall asleep but I wake up a lot, so much that it basically turns my night into a series of small naps rather than good, restful, sleep.  My soon to be former neuro said that he’d been trying to get the results of my sleep study but failing.  “Oh I can get you those” I say.  “They recommended a follow up study with a CPAP because I guess they say I might have upper airway resistance syndrome….whatever, I just wake up every night in the middle of the night drenched in sweat.  I doubt it’s gonna help that.”  Turns out that I am very wrong about this.  I should have realized, I don’t sweat.  Unless I’m passing out.  That should’ve been a clue that the waking up in sweat was something other than being overheated.  My soon to be former neurologist explained (and I won’t do it justice here, so pardon my paraphrasing):  when you have something like sleep apnea or upper airway resistance – they’re really kind of the same thing, just a little difference in the mechanism and severity – it can activate a sympathetic response (hence the sweating).  There’s also evidence that it can contribute to the development of cardiac arrhythmia.  Hands up, who just had two weeks of intense palpitations and a racing heart rate for no good reason?  Oooh, oooh, me!  I did.

Ok, to sum up, what he’s telling me is that the waking up drenched in sweat is probably caused by the airway obstruction rather than in addition to (which is what I thought), and that this potentially has much further reaching consequences than a bad night’s sleep.  I’ve done a bit of reading since the appointment, and it sounds like it’s a sort of “chicken or the egg” thing with regard to autonomic function too.  I.e. bad one makes for bad other, although which one comes first is up for grabs.  But maybe fixing the sleep could help with some of the autonomic function.  Gosh that’d be swell.

Now, I just need to get my ass into the sleep lab in the next week or two and maybe this will all have been worth something.

wait for it

I have, by all standards, what counts as very good health insurance.  I still wait for care.  I’m not saying “obamacare” is going to fix all the problems, but don’t tell me that what we have right now is better because you don’t have to wait.  Try making a new patient appointment with a decent primary care doctor, or worse, try for a specialist.  Even in provider-rich Olde Historic Big Northeastern City, you still have to wait for it.

http://www.hulu.com/watch/605513

demystifying

I’ve decided that when I talk to healthy people about my illness, I’m going to start using MS as an analogy.  This is because most people have never heard of dysautonomia or Ehlers-Danlos, but they have heard of MS.  There are TV shows and movies with people who have MS.  They may even have a friend of a friend of a cousin who has it.

This is not scientifically sound at all.  But then human cognition isn’t really rational.  We like to think it is, but it’s not.  We are subject to many logical fallacies in our thinking, and have to train ourselves NOT to think like that.  I believe that this tendency is most apparent in our social thinking, and I suspect it is facilitated by if not exactly because we don’t tend to think about our social thinking.  How we “feel” about people is how we feel, not how we think.  We might sometimes use cognitive words to describe the states and decisions we make about people, but how much more common is it to discuss those in terms of feelings?

So when you’ve decided that it’s time to disclose your illness, you are left with the daunting task of breaking through ignorance and I think that one tool that can help is analogy – specifically, linking the disease to something that is familiar.  My hypothesis is that the more familiar a known disease entity is, it is more accepted it will be as valid.  Hence, “It’s like MS…” with the caveat of “except it’s specific to the part of my nervous system that controls my blood pressure, heart rate, sleeping, and eating. So I get dizzy and faint when I stand up for a while, I get really tired from doing very little, and there are a lot of things I can’t eat anymore.”  I don’t need to include “going to the bathroom” and “having sex” because really, they just don’t need to know that.  Well, the bathroom thing can be relevant if you’re trying to explain to a supervisor why you need frequent breaks or an altered work schedule, but I’m talking more about the less formal disclosures to coworkers who otherwise have no basis of understanding why you can’t come to “super fun lunch time” and think you’re just being snobby.

Special

“Can you order a special meal, like they do on the airlines?  when you fly?” This is what the HR rep asked me at a meeting this week when we were discussing difficulties I am having with the departmental dinner that I was ordered to attend.  Handily, I had printed out a two page listing of foods one can eat on the various stages of a gastroparesis diet, and it was sitting on my desk someplace.  “Oh, well, it’s really restrictive…my diet.  Hang on, I have it…”  And wow, you’d have thought I had just started unbuttoning my pants to moon her or something.  She literally reared back in her seat and exclaimed “No, oh no you don’t need to show me…”

Now, let’s take a moment here to go through all of the ways that this sucked.

  • Primarily, if I don’t NEED to show her, how about she trust me when I say that eating out is not gonna work for me without a shitload of hassle that is going to sap my resources for the next day?  How about letting me make that call?
  • I understand that HR is sensitive to “forced disclosure” but this was not forced.  Well, except by her presumption that I can’t make a reliable judgement about what I can and can’t do given the intrinsic resources I possess and the external resources that my employer makes available to me (i.e. hard to plan whether you need to haul a heavy bag of food around Ye Olde Historic City when the people planning the event can’t tell you even what time it starts let alone what’s on the menu).  This was, given the conversation, me CHOOSING to try to educate her.  And her acting like I just did something shameful.  Nice.
  • The assumption that I fly, that I go out to restaurants on my own time.  And not just assuming, but hanging on to this assumption despite my telling her that I am very very limited in my capacities to get out and do things.  Did she just think that I was conveniently unable to do “social” stuff or travel for work?

Really, the first one was the kicker.  It underlies all the other problems I had with that, delineable and not.  I have my own personal struggle with whether to educate or not, most often at work but sometimes with the few friends I have left and family.  Needing to explain to my brother recently that no, I can’t go out to brunch with him because it would be an exercise in frustration and martyrdom for me to sit at a table while everyone else ate yummy food and I nibbled on a piece of dry toast.  He knows what’s up.  And still.  I struggle with whether or not to do it because I am, by my nature, an advocate and an educator.  I explain things.  Sometimes too much.  Woe be to the workstudy student who asks me what a word means.  I’m old enough now to not (usually) launch into a lecture on etymology and usage and to ask “How detailed an answer do you want?” before I go there.  I am the same way with the health stuff.  I have given quite a few impromptu lectures now on autonomic function (which I barely understand – but which my understanding of significantly surpasses what is possessed by most people without dysautonomia).  And yet, despite educating and offering this information, I see little change in the people I offer them to.  This is where the struggle comes in, and this is where I am likely to get pissed off.  I dislike disclosing to people there is no need to, and I dislike when I disclose and discuss with people and they fail to incorporate the knowledge into action.  E.g. “super fun lunch time” invite I got from my boss recently.  I KNOW I have discussed my functional limitations with her as they pertain to work activities.  Can’t stand up for long without getting faint; walking is fatiguing and sometimes very painful; can’t tolerate hot environments without risking passing out; can’t eat much and since I don’t know how food I didn’t make was prepared, really shouldn’t eat it unless I want to find out the hard way that it had too much fat or fiber or some other gut slowing ingredient; can’t delay eating or my blood sugar drops.  And yet, here’s the invite for our office to go (walk 3/4 mile) a tourist packed, overheated food court.  “Super Fun” indeed.  It is everything I can’t do.  Walking crowded city streets with ice and snow and a sizeable number of stairs on the shortest path; wandering around inside the food court, dodging clueless hunger crazed tourists; food I can’t eat; nowhere to sit; nowhere to put my coat and bag (and I would have a bag, for my water, my meds, and my food that I can eat).

So here’s someone I’ve educated and who has done nothing with that information.  Nothing useful at least.  And it puts me in an awkward position of having to say “no” to my boss, who is not good with being said “no” to.  And that is why I do struggle with the disclosures.  But that is my struggle.  I don’t need to add to that with attitude like the HR rep’s.

guts for garters

That is one of those phrases that is, if you stop and think about it, quite awful.  It is also one that pops into my head when my guts start spasming.  As they are now.  What prompted today’s trick?  It could be that I ate breakfast (how dare I?!).  Apparently that is still forbidden, eating before 11:00 AM.  It could be work stress.  I just was put on notice yesterday that the departmental staff appreciation dinner is in June (a very ill timed day in June) and that we are ALL expected to go.

Go and do what?  Go and watch other people eat while my window of being able to eat anything trickles away?  Go and stay out and up late on a Monday, the start of a week and a particular Monday that happens to be the day before a conference I have to go to half-way across the state?  Go and not drink but watch other people drink and get drunk, and socialize with each other but not with me  because I’ve been judged to be not a team player?

Golly.  Why not.

So my guts are in an uproar.  And so a work at home day has turned into a day on the couch.  I refuse to feel bad about this.  As soon as I finish this post (while I wait for my yummy magnesium powder drink to cool off enough to gulp down), I’m changing into my jammies, rounding up my kitties, and flopping on the couch with a heating pad and some netflix.  There’s my employee appreciation.  And they can have my guts for garters, for all the good it’ll do them.

pumpkin and mushroom risotto

Made a new food I can eat the other day.  Again, pumpkin is prominently featured.  This is because it’s one of the few vitamin-rich vegetables I can eat, and a fiber I can tolerate.  And I like it.  So why not?

As usually, I did not write down any of this while cooking.  I just made it up as I went.  So assume the quantities and times below are approximations.  Ah, and I didn’t use fancy arborio rice, just plain old long grain white rice.

  • scant 1 tsp of butter or oil, divided (as in 1/2 teaspoon, then another 1/2 teaspoon…not a single 1 teaspoon sized pat).
  • A pint of white mushrooms, cleaned and coarsely chopped.
  • 1 and 1/2 cups white rice
  • 5 to 6 cups of chicken stock
  • about 1/2 cup of pumpkin puree
  • 2 cloves of garlic
  • seasoning to taste (I used salt, ground black pepper, ground rosemary, sage, and thyme)

In a large saucepan, bring broth plus one clove of garlic and seasoning to a simmer.  While that’s brewing, add 1/2 teaspoon of butter or oil to a large non-stick dutch oven or deep skillet, sautee mushrooms and second clove of garlic until the mushrooms are tender.  Add seasoning as you sautee.  Remove mushrooms, add second 1/2 teaspoon of butter or oil to pain, and sautee rice.  I never really know when it’s done, but I tend to go with “until it starts to smell nutty”.  Decrease heat on rice, turn off simmering broth, and slowly (and carefully) add about a cup and a half of the broth to the rice.  Return to a medium/high heat and stir until the liquid is absorbed.  Add in mushrooms and continue adding broth, about a halfcup at a time*.  With the last cup, stir pumpkin puree into the rice mix.  Cook (stirring constantly) until liquid is absorbed.

* Ok, so here’s where the EDS takes over.  With real risotto, you just keep adding and stirring, adding and stirring a little at a time, you know, until all the liquid is gone or you pass out.  Unless you’ve got a really kick ass kitchen set up with stools and stuff, this standing at the stove and non-stop stirring is hell on people with orthostatic intolerance and arthralgia.  So, after about 2 rounds, I stop with the “add and stir” crap.  At that point, I just add in ALL of the rest of the broth and the pumpkin (gotta stir that in good), stir, and turn way down, cover, and leave it alone for about 10 to 15 minutes, stirring occasionally and checking to see if the liquid has absorbed and the rice is tender.  This is one big advantage of using regular rice…it’s not as starchy so it’s less likely to stick and burn at the bottom of the pan if it is neglected a little.

It was super yummy, that with a rotisserie chicken from the local “fancy” store = 3 days of dinner.  If you want to lower the fat more, use less butter/oil and a low(er) fat broth.