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.

season of sleep-lessness

This past week has not been a banner one for sleep.  I am sleepy.  For the most part, I fall asleep.  Sort of.  And there’s the problem.  I fall into this light napping sort of state that is certainly not awake enough to get me out of bed and onto the couch with a book but not slumbering enough to keep me out.  And when I wake like this, it is inevitable that my bladder, now apparently a misfiring thimble, tells me that hey hey hey hey I’m full time to get up and pee!

The past two nights, I’ve had both stomach pain and nausea as well as intermittent shooting pains in my hips and legs.  And electric shock-like feelings in my arms.  While all of the above suck, the shock feelings in my arms are a new sensation, a new trick.  I know what it is, I know it’s a nerve thing.  I don’t know what’s causing it, something mechanical – i.e. a joint that’s slipped and is pinching (I’ve been having a lot of neck pain during the day while I’m up, so this isn’t an unlikely cause) – or a progression of whatever’s up with my nervous system.  Hoping for the former.  Whatever the cause, I’m definitely in a bad sleep phase right now.

The time change is not going to help.  On the plus side, when the clock says 10:00 PM, it’ll feel like 11:00 to me and hopefully that’ll mean I’ll get sleepy earlier.  On the down side, it means when I wake up wide awake at what my body thinks is 5:00 AM, it’s going to actually be 4:00, and it’s a long day that starts at 4:00 AM when you don’t get home from work until after 7:00 PM most days.

I tried getting out and about, thinking that maybe the daylight would help to put me on a normal rhythm.  Got some nice pictures out of it, but not so much with the sleeping.

color photo close up of a tree branch full of red to yellow shaded autumn leaves

This is the time of year when I should be getting BETTER sleep, with the temperatures falling.  That might be a clue.  While the temperatures fell, and we had some lovely crisp autumn days, they have also been yo-yoing a bit over the last week and a half.  We started out with lovely 50 degree days and then shot back up into the 70s, and now back down to the low 60s.  I know from bitter experience that this does not treat my body well.  E.g. the shooting stabbing joint pains at night are a direct consequence of this.A stone wall in autumn woods at sunset

Went for a short walk yesterday, took some nice pictures of the fall color before the rain came in today.  It’ll probably knock all the leaves down that the windy Halloween night didn’t take out.

Some of this, the stomach stuff, maybe could be helped by eating earlier.  Easier said than done when you have to eat two dinners that don’t start until 7:30 PM though.  I have managed to gain back some weight with the two dinner approach and I really don’t want to abandon it.

But I’m not giving up, just need to think creatively here.  I can start bringing two “lunches” to work and eating one late, before I leave for the day.  More weight for the bag, but that’s what my husband bought me an awesome rolling bag for.  It’s not fashionable, but it’s roomy, lightweight, and water resistant.

Another thing I can do is cut down on the phone screen time before bed.  It hasn’t changed recently, but it may not be helping if I’m already in a light sleep phase.  Well, that’s what a good old fashioned paper book is for.  I’ve got Donna Tartt’s The Secret History.  She had me at “classics department” (in a past life, I was a classics minor at a snooty private liberal arts school in the northeast US).

we apologize for the inconvenience…

As I continue to work with a chronic illness, I am developing a real phobia of the term “inconvenience”.  On the subway, “inconvenience” means impassable obstacles such as a steep mountain of stairs between you and the street.  At work, it translates into no food, pain, migraines, fatigue.

I was thinking last week about what I would paint or draw if I could paint or draw.  It would be a series of dyadic scenes, one side is “what you see” and the other is “what I see”.  Keyboard and desk on one side; torture device on the other.  Rambling path through a hilly, sunlit park with people on bicycles, babies in carriages, and children on roller skates on one side; scorched, Escheresque hellscape crawling with demons on the other.

I’m thinking about this today because we have a standing meeting that was rescheduled from its usual standing time of my work start time to a half hour earlier.  It is also on the other side of a steep, cobblestoned hill (the short path involving slippery marble steps…the long path involving hordes of clueless undergrads, perpetual sidewalk construction, and other “inconveniences”).  Our receptionist also scheduled me for a back to back, so I have a meeting at my office (on the other side of the hill) set for exactly when the prior meeting ends.  Not ok, since the prior meeting always goes long and it takes me twice as long as my colleagues to walk back to our building after.  And if I want lunch today, I will have to drag that with me all the way, hoping that it is not getting too warm for the hour and a half or more that it’s not refrigerated (remember, my soft food/liquid diet = soups and puddings).  So I guess it’s to be pain and fasting for me today.  We apologize for the inconvenience.


Woke up at about 1:00 AM last night on my side with my knees bent.  Ooh, that hurts, I thought, better roll over.  Tried to roll, but the knees weren’t having it.  Nope.  Had to manually, i.e. by arm, hand, and other muscles that really don’t like to do anything, roll onto my back then slowly unbend each leg.  It hurt like hell.  Hurt as bad as when I fell on the ice back in Michigan and blasted them to crap way back in 1998, when I still did thing like run in the snow.

What a thing to wake up to.

My knees had been feeling a bit cruddy earlier in the evening, not painful, just tight and weak.  Like my thighs weighed too much for them.  Noticed it going up and down the stairs. Felt like my knees were swollen.  They weren’t, not that I could notice.  With all this joint pain, I’ve nearly never had any actual joint swelling, which is why it’s is much more accurate to say I have arthralgia than arthritis, however, your every day coworker does not know what “arthralgia” means…and you’re looked at with suspicion for using big medical words.  So I usually just say “arthritis” now when I have to offer a functional explanation of my joint pain and dysfunction.  It is good to have the EDS-HT diagnosis for things like this now, at least in a more medical context.  It explains the algia without the inflammatory features of the itis.

One more work day then a day off.  Not totally “off” since I’m having bloodwork.  I had run across some references to anti-neuronal antibodies associated with autonomic dysfunction, specifically with GP.  These autoantibodies can come from cancer.  I’d been meaning to ask the GI doc about them but I knew that she’d probably think I was nuts for, well for what?  For looking for reason why a non-diabetic 42 year old without a history of spinal cord injury seemed to go from an accelerated GI tract to gastroparesis over just a few months?  Doesn’t sound so nutty when you spell it out, and yet I am 99% sure that had I asked her to check into this she’d have regarded me strangely…strangely in a way that compromises care. PCP was all kinds of “WTF?  You have gastroparesis?  They don’t know WHY you have gastroparesis?!  Before you take on some new thing, someone really should look into what caused this,” I did say that it could be the EDS and he ran off to his computer and printed out a long list of citations linking them (so much for that former GI doc who said there’s no association between EDS and GI stuff other than aneurysm – god she sucked).  But I’ve had EDS my whole life, if I do actually have it.  And this blisteringly symptomatic GP really is a new thing.  So I brought the question to him.  And so tomorrow AM I get bloodwork for anti-Hu and anti-Ri.

new neuro

My old neurologist left his practice in a huff (he couldn’t even wait a minute and a huff) last Fall (post “run away“).  He sent a kind of rambly letter which left me very little time to get in there and get my record (they weren’t mailing because that would be expensive).  It was a very busy time of year for me at work, so while each day or two I’d remember after getting home from work “crap, I need to call that guy tomorrow and get my record!”, by the next morning I’d forget….or I’d get so blisteringly busy at work that by the time I called (4:30) they were gone for the day.

The recent gastroparesis symptoms have made it clear that I need a different migraine med.  The symptoms get markedly worse after I’ve had a migraine and after I’ve taken the tizanidine this guy prescribed for my (supposedly migraine related) neck pain.  I am not sure how much of the GP- exacerbation is due to the migraine and how much is due to the fioricet I take for them, I think a sizable amount.  Time to look into something else, especially since the fioricet really doesn’t help a ton anyhow.  I do not love the idea of seeing a new doc right now, and filling out the questionnaire for things like “how many days in the last 3 months did you limit your (work, housework, leisure) activities because of a headache?” makes me want to, well scream kind of.  Because for someone like me (and like most of you reading this), (a) I have no fricking social life right now and migraine is only one part of that (b) I get up and going with a BP of 80s over 40s.  Unless I can’t see and am literally so dizzy I can’t walk, I get up and I do things if things need doing.  So unless I am having a massive aura-filled migraine, I do not limit any further than I already do.  But I have a lot of limits.  So how the hell do I fill out this survey, which is not made for someone like this?

Eh.  I guess I’ll leave it blank and ask him.  I kept a headache journal by iPhone app for about a week.  6 days of headaches, several per day on some days.  But how much of that is from low blood pressure, dehydration, over-exertion?

I suspect I am overthinking this.  One thing my former neurologist said to me was “you’re a minimizer.  you minimize your symptoms”.  I’d never have classified myself as that but I thought about how I probably come across in my day to day and I think that this is correct, sort of.  I don’t present to a doc’s office saying “oh my god my migraines are destroying my life!” partly because well so many other things are at this point, and partly because I don’t know which symptom is a migraine symptom and which headache is a migraine headache.  So I’m not a minimizer as much as I am a contextualizer.  If people aren’t willing to consider my context (how many times did you visit the ER in the last three months because of a headache?”  none, because I’ve been in a lot of ERs, they tend to be unhelpful, expensive, and sometimes downright horrible), then yes, I will come across as under-reporting or minimizing.  The same thing happens with pain.  Pain scale, one to 10.  I have stopped contextualizing on this, because I find that it is not how they expect you to report.  If I report pain on MY pain scale, it’d hardly ever get over 4.  But, after being around people who are reporting pain at a 9 and are not fainting, sweating, speaking through gritted teeth, and are able to breath normally, I realized that MY pain scale is perhaps a bit skewed.  Mine is like “ok, if 10 is passing out…” and I don’t think that this is what most people report on, because most of them do not have intimate, recent, recurring knowledge of lots of pain.

In other news, I spoke to my boss yesterday about not being happy about how my accommodation request is being handled, and about communication with her.  That was NOT an easy conversation to have and I am really proud of myself for managing to have it.  Also went for an appointment for a referral for mental health/therapy, which went pretty well.  And later today, I see my primary care, who is going to freak the hell out since I’ve lost another three pounds since I saw him last week.

Blending in

Got a new blender, a Vitamix.  And just in time since on Thursday, the bad GP symptoms came raging back and have plagued me since then.  What prompted that?  I really don’t know.  Here’s a list of things that were different this week:

  • Massive migraine Monday.
  • Meds for massive migraine.
  • Disrupted routine:  Wednesday through Friday I had to attend a local conference.  Those were three days of not being able to eat more than a little thing of lactose free pudding during the day, not getting enough fluids, and having to take meds for the pain I incurred from hauling the departmental laptop around (oh and walking a mile for a lunch that never happened on Wednesday, a mile in the warm, humid sun – thank you coworkers who could not make up your damned minds and then after we’d gotten so far afield from the conference site, decided to just go to a packed Panera)  
  • Rice milk, which I drank on Wednesday after running out of Lactaid.  Haven’t had the rice milk in while since it’s nutritionally crap and I’m trying to make the most out of what I eat right now.
  • Getting really upset (Monday from day derailed by Migraine; Wednesday from…well, all of that.
  • All of the above.
  • None of the above.

Because it could be something else. I’m tracking this stuff, trying to figure it out.

In the meantime, I have an awesome blender, courtesy of my husband, who loves little more than researching and buying gadgets, kitchen included.  I think this thing could pulp mahogany.  This weekend, I finally made carrot soup that doesn’t have carrot chunks and threads in it, veggie chunks and threads = not good for the slow of stomach/ gut.  I made blended sweet potato (oh sweet potato, how I’ve missed you!)  And I made blended (lean) meats, looks gross, tastes yummy.

All things need to be well cooked prior to blending (meat obviously, but also the veg) since raw or undercooked veggies are not good with the slowness.  There’s a real danger than the vegetable fibers will stick around, accumulate, and form a plug of sorts.  Sounds awful, right?  So thank god for a blender that can turn the vegetables into a liquid so smooth it runs through my finest sieve!  Boy, what it does to a smoothie is amazing.  It’s a pricey blender.  but you know what else is pricey?  Missing work, ER trips, doctors’ visits….and then there’s the incalculable value of just not feeling like total hell.  So we found it at a (relatively) decent price and we sprung for it.  Given that I can’t eat much more than pudding consistency, I think it’s worth it.

Here’s hoping that keeping up the calories will help.  I know not having enough hurts.

Another trick

Here’s a new one.  Back pain, spinal back pain to be precise.  Oh the hits just keep coming.  Last night, in bed, tried to turn over and woah…my back wasn’t having it.  It’s a very circumscribed area and it is exactly on the left side of my spine.  Thoracic.  Yay.  Because I needed that.

My guess is I hurt it coughing.  It does not feel like a muscle pull, unfortunately.  It feels like it’s right smack on the bone.  Even when I’m not turning or twisting, i.e. just sitting here, it feels like someone’s putting out a cigarette on my back.  Crap.  Crap crap crap.

And here I was celebrating because yesterday, I didn’t feel totally awful.  Bad headache as the day wore on that was like having a drill going on my skull by bedtime, but believe me, that was an improvement from how I had been feeling just the day before.  So now my body says “hey here’s a new one” and off we go.


Enraged bowel syndrome.  Because mine is more than “irritable”.  It’s psychotic.

I spent most of yesterday hunched over and in pain with chills, nausea, and a massive inability to go.  Yes, a big change for me.  But not being able to “go” does not mean my gut didn’t want to go.  Oh it wanted to, but it just couldn’t get it together.  Times like this, I feel very much like what is happening is a lack of coordination.  It would fit with the rest of me, my overt and external motor skills leave a lot to be desired.  I walk into things, I have days where I can’t pick something up without knocking it about like a deranged, drunk juggler first.  So why should my gut be any different?  Why shouldn’t it sometimes just be like “whup, ooops, woah!”

I am exhausted from this.  Exhausted short term, I feel like I was in battle yesterday, I am so tired and achy from the muscle tension that comes with all that pain (I did try to relax, I’m not bad at putting the pain somewhere else for short periods, but only short periods, and colicky pain always does me in because you ride a wave, get past it, then lose your focus and when the next one comes you’re not ready for it).  Exhausted long term, as in so fed up with the evil nasty ways of my gut.

I believe today will be a low food day.  I’m having a lot of those.

So what set this off?  My money’s on migraine.  Migraines, and/or migraine meds, tend to give me stasis symptoms in my GI track.  The whole thing.  Nausea and indigestion up top, bloating and constipation down below.  Migraines and stress are the only things that will lock up my usually far too quick gut in a gridlock of pain.  So migraines last week from the whacky weather, hence migraine meds most days last week, plus some gut-meds since I had to be up and at meetings early a few days.  Then some stress because a young co-worker got bent out of shape by my manner (someone who’s very, er, sensitive…I’m not insensitive but I’m finding that I just don’t mix well with people who are femmy and insecure in a work situation – I’d like to work on that but truly, I have no idea where to start.  I think it would require a complete personality overhaul….).  And that’s that.  I tried drinking lots of water – all the meds I take are super drying – but I know there were a few days when I fell short.  So add that to the list of precipitating causes.  I don’t know how I didn’t break my teeth off from all the jaw clenching and tooth grinding I know I know I was doing, which is only going to add to the muscle tension in my face, head, and neck, which puts me in line for more migraines.

What a rotten cycle.

Husband was, as usual, amazing.  He does have the unfortunately tendency to get very very quiet when I feel that bad.  It’s not a terrible thing, I mean, it’s not like I’m up for conversations.  Grunting is about the most vocalization I can muster in those situations.  However, I wouldn’t mind an occasional word of encouragement.  Boy, I don’t ask for much, do I?  The word of encouragement is more so I know he’s not freaking out inside.  He’s a black box when I get acutely ill and when I have the clarity of mind to do so, I worry that the silence is fear.  And I don’t like unaddressed fear, I’ve lost partners to that before.  But, last night was not the time to talk about that.  We will later, when I’m more than a day past the bad and it’s not as acute a memory.

hip, hip…

…not hooray.  Opposite of hooray.  My right hip has decided to act up.  The right hip.  The “good” one, relatively speaking.  Last night just before bed,  I was having short, sharp, intense pains in what I refer to as the “ass-al region” on the right.  I woke up pre-alarm clock to a very bad feeling in my right hip, all through the back and to the outside.  Did I bend into pretzel shapes while I was sleeping?  Was the hip slowly moving out of joint like some planet entering a new transit?  A horoscope of misery?  “Hip trine knee – this transit will be a pain in the ass, literally!”

What to do.  Wait and hope is where I’m leaning.  Otherwise, see PCP, get referral, see ?ortho? and hope it’s not a sports doc who doesn’t have the time for someone who can’t leap tall buildings in a single bound?  Act like it’s just the hip when really it’s the whole damned set of joints.  I am not looking for a diagnosis, just hoping I didn’t injure myself.  With unstable joints like mine, it is NOT hard to do.  Sitting, standing, walking, and even sleeping wrong can be enough.

mapping pain

My ex told me that people “can’t remember pain”.  I scoffed at him.  Of course we can.  No, you can remember having had pain, but that’s different.  People suck at remembering the pain itself.

I have never researched this to see if ex was right or was just running on and presenting his own theories as fact.  But now that I’ve had to try to explain the location, character, and intensity of pain in various medical settings, I can tell you that I truly do suck at it.  What helps is if I keep a journal.  I don’t like doing that because I find it draws too much of my conscious attention to it.  It’s not like you can NOT attend to it, part of the nature of pain is that it is a compelling sensation which demands attention.  For some kinds of pain, I can “zone out” and displace it for a while.  It’s still there, but I have this trick I used to do with menstrual cramps where I could sort of put them off to the side – I explained this trick to a therapist once and she said that what I was doing was a form of self hypnosis.  Cool.  Not all pain allows for this though, and very few circumstances do.  I need to be in a very controlled environment.  I.e. not at work, not at a gathering where I need to interact, not in a noisy place.

Trying to recall pain on the spot, pain that is intermittent and so isn’t always manifesting by the time I get to a medical appointment, turns me into a blathering idiot.  “It’s like sort of stabby…” I say, as if I don’t have a bachelor’s degree in English.  So when I need to communicate about the location, nature, and intensity of pain, I need to take the time to chronicle it as it happens.  I’ve had a hell of a time finding a good pain mapping application or utility.  Some are not too bad, but none fits the bill.  The American Chronic Pain Association has some really neat interactive pain maps for Diabetic Peripheral Neuropathy and Fibro, but neither of those patterns fit mine in terms of location so I can’t use them.  What I’ve had to do is download a “body blank” image and then draw on it.  Below is an example.  The text description of the pain image is below the image

Illustration of woman's body from front, back, left and right showing patterns of pain.

Decriptive text:  12/19:  Waking with pain, worsening in leg as day progressed.  Activity = walked approximately 1 mile at work on break.  Pain on waking was left hip sharp/catching pain, bruise-like right inner/upper thigh pain, sharp right ankle pain less intensity than night before on waking, and back pain like the night before but more diffuse and higher.  Left hip pain was very intense – low, back/outside, juncture of top of thigh bone and hip.  Felt more in top of thigh bone.

By the time I had walked ¼ mile, right thigh pain had extended down front to just above knee.  Very tender, even clothing on it felt bad – like I’d been skinned down the front of my thigh.  Right ankle/calf pain made it hard to step up and down curbs and stairs.  Back pain increased in intensity with catching in sacrum and left hip.  On the way back, legs felt heavy and weak.

So this is what I take with me today for my second PT appointment.  Let’s hope it’s helpful!