Trying Mirtazipine, again

Saw Neuro yesterday.  We’re giving Mirtazipine a shot.  It’s worth it, since although the fellow said that he thought that the movements/fidgeting might be more a product of the anxiety than a co-symptom of akathisia, mirtazipine is used for akathisia.

An amusing side note about that, a good friend of mine has been saying “just do whatever they do in Israel, they always seem to get things right” about the akathisia/anxiety/whatever this is.  The  paper where results of using mirtazipine for akathisia were published, the authors are from Israel.  That made me laugh.

So I started the mirtazipine last night.  Because it’s not just for akathisia, but for sleep and appetite (both of which I am sorely lacking in).  I did not sleep well, but I am soooooo sleepy today.  Which is affecting my writing, I’m sure, so apologies to anyone reading this and wondering why it’s so stilted and error-filled.  I’m hopeful that it will help.  I know it’ll take a while for the psych effects to kick in, at least that’s how it usually is with meds for anxiety and depression, so I’m going to try to be patient.  I hope I don’t get any acute anxiety today, because I’ll be on the floor if I take even a half an ativan on top of this mirtazipine induced sleepiness.

Thinking of showering while Hubby is still home this AM.  I’m worried that if I try later, I’ll fall.  Yeah, I’m that sleepy.  Checked my vitals this AM while laying sleepily on the couch after getting up, 80/52, hr 52.  So concerns about falling are not overblown, not with vital signs like that.

And I still have to call the psychiatrist.  I’m not really sure what to say.  “I don’t want to see you again” seems like a good place to start, and end, I suppose.  Minimally, I need to cancel my appointment for Monday.

What’s changed?

This is a question I am answering a lot right now, from my therapist, from my primary care, from myself.  What’s going on that triggered all this acute anxiety and apparent depression?  I’d say it’s “mild” depression, although it’s resulted in my losing 10 pounds now so I’m not sure how “mild” that is.  And which came first, that’s the question I’m asking myself too, although so far I’m the only one asking that.

I discussed some of the very good possible reasons for why this could be happening right now, some of the factors leading up to it.  Focusing in on one or two of those right now, because it’s been on my mind this morning.

I don’t like feeling helpless, I don’t like being or feeling disabled.  It’s been a source of frustration for me since the health problems started.  I have managed those feelings largely through avoidance, avoiding situations where I will have to confront my inability to do something or to do it successfully using the tools I have available.  At work, that could mean something like avoiding meetings in a hot room, trying to reschedule elsewhere, because I will get sick and not be able to actually work…I may even pass out or come close enough to it that I will need to be “rescued” by someone and taken home.  I hate being rescued, in no small part because people do it badly…I don’t just mean they make you feel bad about it (they do, more often than not) but that they do the actual practical stuff badly.  E.g., I got a ride home from work from my brother once.  He showed up drunk, drove like a maniac, swearing like a sailor, agitated, slurring his speech (only a little, “just a little buzzed!”).  It was terrifying.

But it’s not just the rescuing.  It’s the confrontation of my inabilities.  My disabilities.  My “special needs”, which in the context of others’ apparent inability to actually account for and respect those needs, leave me damndably frustrated and often lacking having achieved my goal anyhow.  Sometimes expending more energy and time and health on trying to do it that way, so how much of an accommodation is that?

It’s not good for me, for who I am, to have to think of myself as incapable.  So much of my ego and personality and the glue that holds me together is a sense of my own competence.  That has been very shaken, a series of shakings that started that first time a friend and my boyfriend had to carpool up from the Great New England Wilderness to Northeastern Historic City to rescue my ass because I had driven up alone and then become too ill to drive myself home.  Big trans-state things like that, little tiny things daily.  Less now that I’m not working, and that’s actually been great for my mental health.  But then came the disability application process, and in it you have to really sit down and analyze and catalog all the ways, big and small, that you are incapable.  What you can’t do, why you can’t do it, when you can’t do it, if you can do it at all, how?  what your “special needs” are and whether they work to make you actually be able to do it or just do some semblance of it.  Like laundry.  I “help” with the laundry by moving the clothing from the washer to the dryer, in stages if it’s not a small load.  My husband does the laundry though, he’s the one hauling baskets up and down stairs, so he’s the one starting the wash and since he’s down there usually the one moving the clothes (all in one quick go) from the washer to the dryer.  I “help” with groceries, I help make the list, I put things away when my husband gets home.  I can’t write it like that for the disability form though, it’s all about what you CAN’T do and why, or the limits of what you can do.  I’d have to explain why I can’t go grocery shopping myself, that the standing and navigating a heavy cart around (fucking morons) people in the store is too physically demanding for me, that I get hurt, that I get dizzy, I start having cognitive problems (memory, concentration, mood) because I’m now orthostatic from being up walking around so long, and I forget items, have to decide if I have the energy to go back and get them or just skip them and maybe postpone some meal I was going to make….you have to give these details of WHY you can’t do what you can’t do.

I think that process broke me.  I have not been the same since.  Admittedly, that process was during the cycling nausea hell months and was also when my GI doc upped the crazy-making Reglan.  Talk about your confounds.  But focusing just on the question of “what changed”, i.e. assuming it wasn’t the Reglan, or wasn’t only the Reglan, what changed now that has made me feel so full of worry and sometimes dread, so detached and disengaged even from the things I used to take pride in doing (taking care of myself, my home).  What changed was that I got broken in March, and now it’s the anniversary of when things all went to shit at work, a reminder that although I tried as hard as I could manage, I could not keep my job, keep my boss happy/satisfied enough that she wasn’t making my life hell, keep my commitments to work even with two work at home days and still manage to take care of myself.  Happy anniversary.

I’d have needed my usual if not regular resources – not the least of which is that crucial belief in self competence – to get through this time period well.  Is it any surprise that now that I’m here after March having broken me, having shaken deep cracks in my sense of self competence, what was going to be a hard time turned into a nightmare?  In all of my list of intrusive concerns, the focal points (when they are discernable, they were initially, the metamorphosis they’ve taken into a general dread is only recent) have to do with competence and capability.  Even the ones about people dying, the start out with the thought of “where would I be without this person?  how could I live?” and they turn into tragic, compulsive set of scenarios playing out in my head of them being dead and me being told, crumbling from grieve, so intense that I actually start grieving now and have to try to calm myself down and remind myself that they are not, it’s ok.  But it could happen, some ugly little bastardly part of my brain adds in at those times.

It’s tempting to say “SHUT THE HELL UP!” to that ugly part of my brain, but I’ve found that being ugly back to the ugliness just makes more overall ugliness.  It just feeds it.  I think I need to find a way to be nice.  This is hard, in part because anger and prickly hostility is a tool I’ve used that makes me feel strong, stronger than sorrow or empathy for someone who is hurting me, even when that someone is myself.


Trying my hand at this recipe for Low fat gingerbread biscotti today.  Slightly modified because I can’t do whole wheat flour.  Hm….we’ll see how they turn out.  Pictures if they’re good!

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.

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).


Got my results from 23 and me yesterday.  Me and Mr. Patient did.  Ancestry:  I am soooooo European.  99.7% European to be precise.  And apparently more Irish and British than Italian, which is a big “wtf?!”  Although I’ve always known that the Italian side of my family doesn’t look typically “Italian”.  Guess that remote little North-western village really isn’t in the same gene pool.

map and graph of european ancestry

Mr. Patient, on the other hand, has a speck of the Tribe in there.  Actually, two tribes.  Ashkenazi and some strange mitochondrial bits that are very uncommon in most places, except in a few populations including Native American.

My health risk profile is pretty good, if not really on point.  For example, I have genotypes associated with lower risk of having Migraines and Endometriosis.  Ha!  Ha, says my body.  I’ll show you migraines and endo!  Higher risks of selective IgA deficiency (not surprising given all the thrush infections), stroke, sarcoidosis, gout, narcolepsy, and alcohol dependence among other things.  The stroke risk gives me pause.  I really do need to quit smoking.  I don’t know if if’s from having worked on a vascular unit, from my grandmother dying from stroke complications, or from the nasty history of vascular bullshittery on my paternal grandfather’s side, but I do worry about stroke.  More than cancer in fact.

There’s an EDS group on the site, so I’ll be checking my data with them.  So far, 23 and me doesn’t do any data analysis for EDS….which I think is bad on them.  I know that there’s not a lot on some of the subtypes, but I thought type IV was genotyped.  You’d think they could map that.

Day 3

It’s Saturday.  Three days in to my 5 day weekend.  A little sad that it’s half over.  Mr. Patient is out getting groceries and I’m turning some of my pumpkin angel food cupcakes into bread pudding.  The cakeyness of the cupcakes is questionable.  They are tasty, but they have more of a quickbread/muffin quality than cake one, so they seemed suitable for conversion.

I don’t have recipe yet, since it’s still cooking and filling the house with the most amazing cinnamon and nutmeg smells, by the way.  I threw some of the apples and apple “syrup” into it to, skipping sugar (ok, a few crumbles of brown sugar on top but not the cup and half or whatever of white sugar that my old bread pudding recipe called for).  Also, no half cup of butter.  Not if I want this food to empty out of my stomach.   I used a scant teaspoon of butter to grease the casserole pan that I’m cooking in, a must or the “bread” will weld to the sides.  So that’s about 4 grams of fat just from the wee bit of butter.  Meaning this is not something I can eat large amounts of at once.  I try to keep the fat content low since higher fat foods tend to slow gastric emptying.

Such a tragedy that I’m lactose intolerant and now fat intolerant.  I used to LOVE butter.  I am told that when I was a child, we’re talking highchair level kid, my mom once left a stick of butter within my reach and when she went to use it, discovered that I had grabbed it and was eating it like it was a candy bar.  Yes, my slow break up with butter has been painful, but I will survive.

Here’s what the “bread” pudding looks like in the oven.  Probably could use a bit more milk and egg, but we’ll see.

small casserole dish of bread pudding in oven

5 days

I’m on day two of a mini vacation I’m taking this week.  I took two days off in advance of the long weekend, giving me a nice extra long weekend.

Yesterday, Mr. Patient and I went to even older historic towne up north of ye olde historic northeastern city.  Hint: it being October, this was a very seasonal time to visit said historic towne.  I packed a cooler with low fat lactaid milk, crackers, and low fat ground chicken chicken salad.  I also found a shop that made amazing soy chai lattes.  And some research ahead of time turned up a seafood place where I was able to at least eat some grilled tuna (minus the vegetables and the overdone roasted potatoes…Mr. Patient ate that).  I had a bit of heartburn last night, but it wasn’t terrible.  I think it was more chai induced than fish.

We planned a short trip, so there was no big disappointment when I didn’t last a whole day.  We took the walking very slowly, just ambled around like the old couple I hope we get to turn into.  Rested on benches a lot.  Got my cards read, nothing remarkable although he did say “you’re having a hard time keeping weight on, aren’t you?” although my wardrobe probably gives that away.  Bought some catnip that is apparently catcrack, according to my cat’s reaction to it.  It’s going to have to be kept in a tightly closed drawer unless we want her to have herself a little kitty bacchanal right here on the living room carpet.

It was really nice to get out and about.  I planned it carefully, including the timing.  I knew I’d probably be a little sore and tired the day after, so we did it on day one to give me plenty of resting time after.

And today, I am.  Tired.  I think my Fall allergies are kicking up a bit because I’m feeling a bit dizzy, although who knows.  Could be blood pressure or migraine too.  So many reasons to be dizzy.  And so I’m sticking close to home today.  I decided to do a little baking.  I had read some recipes for “two ingredient pumpkin cake” (e.g. this recipe, or this other recipe), and thought I’d give it a try, with angel food cake of course due to the low fat requirement of my stomach.

I Just did a set as cupcakes and boy are they good.  I already ate one and they’ve only been out of the oven for 15 minutes.  Here’s my version of the recipe.

Pumpkin Angel Food Cake with Apple “Compote”

Low fat!


1 box angel food cake mix

Pumpkin pie spice to taste:

1 & ½ teaspoons of ground cinnamon

¾ teaspoon ground ginger

½ teaspoon ground nutmeg

A dash ground clove (because I like clove…most pumpkin pie recipes do not include this in the spice set)

1 can of pureed pumpkin

Move oven rack to lowest position. Heat oven to 350°F. In extra-large glass or metal bowl, beat cake ingredients with electric mixer on low speed 30 seconds. Beat on medium speed 1 minute. Spoon into ungreased cupcake tins, fill about ½ way.  I used extra large cupcake tins and could’ve gotten 10 full sized cupcakes out of it if I hadn’t tried to fill an 11th cup (d’oh!).

Bake about 25 minutes or until crust is dark golden brown and cracks are dry. If you use cupcake liners, you can skip this next bit:  Immediately turn pan upside down onto upside-down metal measuring cups in a large casserole pan. Let hang about 2 hours or until cake is completely cool. Loosen cake from side of cups with knife.

No Cook Apple Compote:
1 – 3 apples (I used 1 granny smith/green apple and two gala apples)

1 medium fresh lemon

¼ cup of brown sugar

Ground cinnamon, ginger, and nutmeg to taste (least on the nutmeg)

Wash, peel, and core apples.  Chop coarsely and place in a medium sized non-metal mixing bowl.  Seed and juice lemon, add to apples tossing with a wooden or plastic spoon or spatula.  Add spices and sugar, and coat apples by mixing gently with spoon or spatula.  Refrigerate.  Use quickly for drier compote, the longer the apples sit in the sugar/lemon juice mixture, the more liquid they will release.  You can cook the mixture too if you want to break down the apples a little more but you’ll get something that is more syrupy and mushy.

Result?  I realized after I made them and took pictures that the apple bits, if cut up carefully in advance, could be arranged to make jack o’lantern faces on top of the cupcakes.  Ah, well, this is why Martha Stewart is Martha and I’m not.  Next time.  And there will be a next time.

Photo of pumpkin angelfood cupcake with apples on top

Next time, I’m putting more apple on!

I took a picture of the inside too, so you can see the crumb texture. I may try this again with a bit of flour added to see if it makes for a finer crumb. Even without that addition, it is quite good.

Photo of inside of pumpkin angel food cupcake

A rather coarse crumb to this version.

even better!

Tried another pumpkin pudding recipe since the previous one, while tasty, had some texture issues.   This is an adapted version of one I found online, I increased the cornstarch; necessary if you don’t want “soft set” pudding.  I also increased the cinnamon, added ginger, and used some brown sugar instead of white and I heartily recommend that you experiment with the spices until you find a mix that is to your liking.  The texture is great.  The eggs add a richness and tempering them before adding them into the mixture prevents you from getting cooked eggy bits in your final product.  Ideally, this should be made in a pot with a curved inner surface, but if you don’t own one (like me), just make sure you scrape the inside lower “corners” of your pot every so often while cooking, otherwise the cornstarch and egg can glob up down there and that’s not so good.

lower fat, lactose free pumpkin pudding (2)


¾ cup sugar (I used ½ cup white sugar and ¼ cup of brown sugar)

¼ cup cornstarch

3 cups low fat, lactose free milk

1 cup canned pumpkin

4 large egg yolks, beaten in a medium bowl

1 teaspoon vanilla

1 dash nutmeg

1 tsp cinnamon

¼ tsp ground ginger

¼ tsp salt


1. Combine pumpkin, spices, salt, and vanilla in a bowl.  Whisk to distribute spices thoroughly and uniformly.   Hang onto that whisk, it’s going to come in handy.

2. Combine sugar, cornstarch and milk in a medium sauce pan over medium heat. Stir frequently until pudding heats up, then stir constantly when it just starts to boil.  Cook for 3 minutes at a low or near boil.  Turn off heat.

3. Slowly pour 1/2 cup of milk mixture into the egg yolks, stirring constantly. This “tempers” the egg yolks so they don’t cook in your pudding pot.  Then pour the egg mixture back into the saucepan and cook on a medium heat stirring constantly for about 1 to 2 minutes.

4.  Whisk in pumpkin, then stir with wooden spoon until the mixture is heated through.

5. Pour into serving bowls and chill.  Takes several hours for the pudding to set.