Fired up

I think I need to fire my GI doc.  Again.  Another GI doc down the tubes.  The most recent of the GI doc follies came last night, around 9:00 PM, when mine called me to tell me that she needed to cancel the appointment I set up with her for today.  This would be ok, if it weren’t coming on the heels of her basically abandoning me in the middle of a medication crisis in August.  I hesitate to use that word, “crisis” because it sounds so alarmist, but there isn’t a better word for it.  “Snafu” sounds too cutesy to describe what happens when your med starts giving you creepy side effects that mean you have to either massively reduce (to the point in ineffectual) or stop the med.  We talked then, right when it happened, by phone.  She told me to follow up “mid week”, neglecting to mention that she was about to leave the fucking country.

I followed up Wednesday that week, and as is usual for her, she didn’t call back.  Eh, I figured, not knowing that she was about to high tail it to Europe, I’ll just call again tomorrow.  Tomorrow came and went and no reply from her.  I called the next day and was told she was out of the country for two weeks.  Well, fuck me!  “Do you want us to have the covering doctor call you back?” her office staff asked me.  “Yes, I guess so,” I told them.  Then I waited.  And again, no call back.

I finally called again and made an appointment to see my doctor.  “What’s the reason for the appointment?” “To check in on my medications, management of the gastroparesis, and to discuss communication.”  Her first appointment was for over a month away, but I took it.  And in the meantime, I managed my own god damned meds and did a better job than she’d done.  I gained weight finally.  Not a ton, but I’m back over 120 lbs and heading towards 125-land, still less than I weighed when this started and still too small for most of my wardrobe, but within a normal range for my size and age.  And then she calls and leaves me a message that she has to cancel the appointment and I should call her secretary today to set up something else that is “convenient” for me.

Hey, you know what would have been convenient for me?  For you to return your god damned calls.  To keep your appointments.  I’m not inflexible, I know things come up but with this doc, that is the norm.  If I were not working, I could perhaps make this shit work.  My primary care routinely runs 2 hours late for appointments, but with his office, you can call and they will tell you how late he’s running.  With GI doc, her office keeps up the pretense that she has her shit together so if you  call, you’re told to come at your appointment time, then you will wait over 2 hours to be seen.  That coupled with the August abandonment and then this most recent malarkey is too much.  Oh and I should mention that the bad feelings that getting this call so late at night raised for me kept me up until 2:00 AM.  On a work night.   So I think it’s time.  I need to find a new GI, which is one of my least favorite things to do.  I had been considering changing within the practice to a different doc, but the no call back from the covering doctor in August leaves me feeling a bit hesitant to do that.  If that’s a sign of how they run things over there, and if I have to go through the trouble of starting over with another doc, it may be just as well to leave her practice entirely.  :/

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Fall food, part 2

The cake was a hit.  Mr. Patient made blackberry coulis, a variation on the recipe here.  Variation because Mr. Patient and I are very bad about our quantities.  We just kind of cook by eye, nose, and taste.  Looks, smells, and tastes right?  It’s right!  I made a spiced peach puree.  A super simple recipe that I’ll post below – and quite tasty….if you like peach.  I was informed by my brother that peach, along with cinnamon is a “dirty flavor”.  It’s not bad, but it’s not fresh, was his reasoning.  Well then apparently I like “dirty” flavors, because I really liked this peach puree and the bright sweetness was a nice counterpoint to the tart and complex blackberry sauce.

Spiced peach puree:

Again, quantities are rough estimates (except for the peaches, on account of packaging).

4 cups of diced peaches, strained.  You can probably use frozen or fresh too but I find the cups of diced peaches are better in terms of softness (or absence) of peel.

1 – 2 Tbsp of cinnamon

2 dashes of ground ginger

1/4 cup of white sugar

Place all ingredients in a blender or food processor.  Blend thoroughly and chill.

In the photo immediately below, the peach puree is to the left of the cake slice.  The right of the cake has the lemon icing, and then laid on that and to the right is the blackberry.  I probably would just do one if I were doing it again, but I had to try it all since this was a new set of foods for me.  The blackberry is too dark to really discern but the color was a deep red, so that plus the cake and peaches made for a really nice set of Fall colors.  Below the cake picture is a shot of the pumpkin pudding, the pumpkin pudding recipe is here.  I made another batch yesterday AM before going out with my brother on our birthday shopping trip.  Consider it “queer eye for Dyspatient”, it was my birthday present from him, a shopping trip to a store that there’s no way in hell I would have gotten myself to because after parking and walking and shopping, I would not have had the energy to get home.  Success, I scored a couple of nice additions to the wardrobe, including two very nice, lightweight cardigans that will convert my yearlong summer wardrobe into something more seasonally appropriate.  With heat intolerance comes a whole slew of clothing constraints, a major one being sleeveless or short sleeved tops are now a necessity.  I’m pretty tired though.  Woke up today with a bit of hurting.  My “little” brother is 6’4″ so even walking slow, it’s hard for him to walk at my snail’s pace (I’m 5’4″), and the faster I walk, the harder I come down on the hips and legs.

angel food cake with peach puree and blackberry sauce

Fruity!

Whisky pumpkin into pudding base in a stovetop saucepan.
And pumpkin pudding!

Fall food, GP style

It’s Fall.  It’s my favorite season, in large part because of the food.  Summer has always been a chore for me, sapping me of my energy, appetite, and interest in doing much other than lying in a cool, dark room.  Fall means the return of cooler weather, the ability to fire up the stove, bust out my favorite yummy foods – oh and my birthday is this time of year, which means birthday cake (i.e. “cakey tribute”) and other treats.  I was dreading it this year because since my gut decided to go on strike, there is so very little I can eat.  I have, however, discovered a few things that I can now eat that used to be bad when my gut was functional equivalent of the autobahn.  And so I am slowly adding modified versions of a few favorites into my diet, and researching birthday cakes that I can eat.  Here’s what I’ve found.

Birthday cake (and frosting):  A no-no due to the fat.  Fat and fiber have been off my food list since March, well honestly, since May when my foolish belief that I could medicate and still occasionally eat normal food was shattered by a trip to the ER for what felt like a mild obstruction.  See, it’s not just the upper gut that’s slowed down to a standstill.  It’s the lower too.  And when I eat stuff  that my stomach can’t break down, I don’t know if it makes its way into the intestine too “in tact” or what but whoa mama is it awful.  Painful.  Slow.  And painful.  Did I say painful?  Yeah.  It’s power-puke everywhere, pass out level painful.  Some minor experimentation with lactaid icecream revealed that even if it’s low residue, if there’s a high fat content, I will have the upper GI symptoms of gastroparesis – i.e. the days long nausea, regurgitation, feeling like I ate a bowling ball stuffed with garbage, and killer heart burn.  But cake has fat.  And frosting is basically all sugar embedded in a pile of fat.  What the hell am I going to eat?  Then I remembered from when I was living with the diabetic and his undiagnosed (but evident) gallbladder disease for three months that angel food cake (or as some call it “angel cake”) has little to no fat.  Looked it up to make sure and yep, it’s a winner.  What about frosting?  Boiled frosting is an option, but Mr. Patient nixed it, so it’s up to him to make a lemon icing/glaze today for my angel-food birthday cake.

My other two favorite Fall foods, which I had learned to avoid due to the fact that they acted like an accelerant on my already (back then) too speedy gut was pumpkin and cider.  It occurred to me that if cider was a no-no last year due to it making things “move along” a little too swiftly, perhaps now that things were doing the opposite of moving, cider might actually be good.  I’ve had it several times this week and discovered that (a) I missed the hell out of warm spiced apple cider and (b) apple cider plus slow gut = just fine.  As long as I don’t drink too much too late, still got the killer reflux/heartburn now and then and fruit juices always seem to kick it up a bit.  Pumpkin.  I was a little worried about pumpkin because I know it has fiber and I’m avoiding fiber.  But….it seems that this is the “right” fiber.  I think it’s the same as the medication-fiber shit you buy in a package, but I don’t have the same response to that.  That makes me bloated, in pain, and still “stuck”.  Pumpkin?  Let’s just say that it works better than miralax or milk of mag and it tastes a HELL of a lot better.  How am I eating my pumpkin, since I clearly can’t have a pie?  Pumpkin pudding!  It’s like pumpkin pie but only the good stuff.  I had to make my own pudding recipe with some modifications, since I can’t eat lactose laden milk products or high fat, so that cuts out any recipe that calls for heavy cream and the like.  But I found a few that used corn starch as a thickener for lighter milk (2% lactaid in my case) and damn, I made some good pumpkin pudding!

Here’s the recipe I made, but I will be modifying it a little to get a better mix of egg/milk/cornstarch.

6 tablespoons of sugar

2 tablespoons of cornstarch

1 3/4 cups of low fat lactaid milk

1 large egg

1/2 cup canned unsweetened pumpkin (I used a half can)

1 teaspoon vanilla extract (I used about 1/2 teaspoon)

1/2 teaspoon ground cinnamon (I used a bit more than that)

1/8 teaspoon ground nutmeg

a dash of ground clove

a dash of ground ginger

1/8 teaspoon salt

Combine pumpkin, spices, and salt in a small bowl.  Set aside.  Mix sugar and cornstarch in a saucepan.  In a bowl, beat egg (well!) with milk.  Gradually add the milk and egg mixture to the sugar/cornstarch mixture in pan.  Cook over a medium heat, stirring constantly, and bring to a boil.  Cook for 1 minute, stirring constantly and remove from heat.  Add pumpkin mixture to the pan, whisking constantly.  Return to a low heat and cook for three minutes stirring constantly – do not boil.  Divide pumpkin mixture into cups, mine half filled four small pudding cups, cover and chill.  

This was super yummy.  After a cup of warm spiced cider and potato thyme soup = I almost feel like I’m eating normally, and it’s very seasonally appropriate.

23 and me and them

I got a “23 and me” kit for my birthday from my husband, the sweet man.  He got one for him too.  For me, it’s a chance to find out a little more about my ancestry, since my mother was adopted and although she found her birth mother when I was a teen, her birth mother is not reliable on matters pertaining to her birth father.  My mother contacted her birth mother A. shortly before A. was about to move to the Southwest.  My mother went to see A. at some big family get together, she went alone.  I don’t recall whether there was discussion about any of us coming.  She came home glowing, with a long rope of a pearl necklace in a leather bag and a black and white picture of two distant looking people in long coats at a beach wall.  There were dramatic stories of how she was given the necklace by A., my mother dramatizes everything.  And there was the story of the picture, which was A. and the man A. said was my mother’s father, Mr. Coffee.  From Ireland.  “Mr. Coffee?  Are you kidding?  And also, “We’re fucking Irish?”

We’d gone through early school years in an Irish-heavy area.  Each St. Patrick’s day, it was a tradition in my elementary school to hang up construction paper shamrocks with the kids names, but with an “O'” put in front of the last name.  There was a sizeable number of “O’Italiano” names up there, mine being one of them, along with the “O’McGowan”s.  Sure, we knew that our grandma on our dad’s side had an Irish dad, but in a city where kids whose claim to being Irish came with parents with brogues, siblings back in Ireland, and weekly step dancing lessons, having a granny who is half Irish barely counts.  Plus, the Italian really just kind of overwhelms when you’re from a half Italian family, as my dad was.  So hearing in adolescence that our mother’s father was also not just half Irish but “Straight off the boat (and straight back on again apparently)” Irish was a strange counterpoint to all those childhood years of being “not Irish” when being Irish was really important.

But then the years went by and A. got older and stranger.  Not too many years ago, A. saw my brother at a visit.  During a phone call with my mother shortly after the visit, she said “You know, looking at (your son) now that he’s grown up, I’m not so sure Mr. Coffee was your father, because (your son) looks just like that guy from the party, you know, what’s his name, Chico’s friend….”

So this is a chance to find out.  Is it Mr. Coffee or is it “Chico’s friend”?  Not that this will say definitively, but if it’s Mr. Coffee, then presumably Western European  is going to represent strongly since the rest of my family tree is relatively well known, although A. herself is something of a mystery, one side traces back to Mayflower days but there is one reference to a “french canadian” great grand something and where I grew up “french canadian” was also what old fashioned, up tight WASPy people said when their WASPy New England family bloodline held some Native American.

And speaking of surprises…the second very special specialist was not bad.  One of the things he said was “I am wondering if you have a form Riley Day syndrome, it’s more common in people of Ashkenazi ancestry but…”  So I told him “Not Jewish, that I know of but my mother was adopted and we really don’t know anything about her father” and my husband chimes in with “But we’re doing that 23 and me thing”.  And to my surprise, the doc was actually enthusiastic about that.  Really, I was truly surprised because I thought “oh god he’s gonna think ‘crazy hypochondriacs!’ if he hears that we just did that”  He seemed to truly think about what might be up with me, and yes, that glorious letter that my primary care wrote helped, a ton.

Also helpful, I think, is that my husband got his work ID badge redone.  He works at Big Daddy BATH, and had originally started as affiliated with psychiatry, although what he does has nothing to do with psychiatry.  Now, his affiliation is more appropriately Neurology, so he got his badge redone to reflect that, and it reads “Mr. Patient PhD, Neurology, Granddaddy of all BATHS”  He should have added “bow to me ye mortals” to the tag too.

I do not have an answer, or a treatment plan. I  do have a very famous doctor who promised to look up some more stuff that fits what’s up with me, who said he would make his recommendations for screening and testing to either of two Autonomic specialists I wanted to go to with his referral, who said “Your primary care is right, EDS can cause some of this, but – and I’m embarrassed to say this – I don’t know how much,” who did not blow off the autoimmune stuff at all, who said that what my hands and feet do sounds like erythromelalgia (he’s the first person other than me who has said that), who discussed the possible diagnoses that he thought fit at first glance and what the treatment options would be for them.  And who thinks 23 and me is cool.   Not bad.  I’m seeing someone else, oh yes, the march continues, in December.  At least, December is when I’m on the schedule.  I will be a pest and try to get in sooner.  And I will definitely bring Mr. Patient, PhD and his magical ID badge with me.

Number two

I don’t have high hopes for it, but I’m trying not to go into today’s appointment with a bad attitude.  That’s a fine line to walk.

Today’s appointment is with the second “very special specialist”.  The one who everyone says has no bedside manner.  Yep.  The turd.

My primary care wrote an amazing letter for me, so armed with that, tilt table test results, and gastric emptying study, off I go.  Wish me luck.

Down a quart

Had bloodwork yesterday.  This is bloodwork ordered by my PCP and when that man orders bloodwork, he does not mess around.

Anti-ganglionic antibodies and a host of immune tests…I think I got all the complements drawn, crazy shit the lab had to look up.  This is because you’re not supposed to get chronic mucosal thrush infections, apparently, with an intact immune system.  So we’ll see how this goes.

why the hell didn’t you go to med school?

This was what my primary care asked me yesterday evening at my appointment for what Mr. Patient has and I now have.  Yes, I now have it.  So it’s cups and tubes for me too.  😦

Mr. Patient’s c-diff toxins came back fine so PCP told him that he can take lomotil now if he wants to.  “Yeah, I’m the one who told him not to take that….” I said somewhat sheepishly.  “No, that’s good.  You were right.  You can’t take lomotil when you have c-diff or you’ll trap the toxins in.  Why the hell didn’t you go to med school?”

I explained that I already dropped out of a PhD program, don’t need to add dropping out of med school to the list.  “You dropped out of a PhD program?  Why?” he asked.  “Because I got sick.  And when I asked for accommodations, they were like ‘oh no, we can’t even consider accommodations in GRAD school because we just don’t do that in GRAD school…’ so I left and went into university disability services so that I can be part of changing that shitty attitude.  And I helped a student who is blind get through law school last year, so I think it’s a win.”

“So yeah, you’re doing good things.  That’s good.” he said.  Yep.  For as long as I can.

I’ve taken to looking at work now as something I am still doing while I can.  It helps with the work stress.  It helps me not panic every time I get sick and might not be able to work at 100% or at all.  (ok, truthfully, 100% is like 150% but that’s become the norm).  It also helps that I have a new therapist who herself has a chronic illness and is literally the first non-MD to whomI haven’t had to explain what gastroparesis is.  And speaking of therapy, I’m off to that now.

the doctor won’t see you now

Next week, I have two doctor’s appointments.  One is with my primary care, to follow up on the not very special specialist I saw a few weeks ago.  I’m off to bachelor number 2 in a few weeks, another try at a very special specialist.  This is the one who I am calling “the Turd” since I’ve gotten very bad reviews of his “bedside manner” from several doctors.  “Oh he’s really good, just no bedside manner”.  Ah.  Code for asshole.  Since the first specialist was such a dud of an appointment, I thought I should reconnoiter with the PCP about it and about strategies for approaching the turd second one.

Next week’s second appointment is with the Ear, Nose, and Throat doctor who has been following me (not very closely, just a yearly check in) for thyroid nodules.  He’s nice.  I don’t know if what I’m seeing him for is really in his wheelhouse though since I think he’s more head and neck surgery than nose and sinus guy, and right now it’s nose and sinus that’s a problem.  See, back in February after the flu from hell, I got oral thrush.  This happens now and then.  But this time, it was very aggressive, and it also ended up in my nose.  Yep.  Nasal thrush.  Don’t google that, the pictures will scare the crap out of you.  We treated with a whole bunch of fluconazole, which seems to help but slowly and not 100%, and with nystatin swish and swallow (which helps a lot faster for the local infection).  About a week and a half ago, it came back.  I think it may be in my sinuses now.  And that is a bit unnerving.  I had some fluconazole left, I’d refilled the month’s supply I had in March, and I started taking it last week.  Been on it a week and I’m doing better….my temp’s down and I’m not as sore through the nose and sinus areas.  So do I keep the appointment?  Back in March, my primary care wanted me to see someone for this but I was tangling with the onset of the gastroparesis, was on a disciplinary attendance plan at work because my boss lost her mind over (excused) absences due to illness and medical treatment (for the GI).  I didn’t want to add another doctor’s appointment in there.  And then by the time all that was letting up, it had passed.  I called early last week when I was still running a temp of 100, still feeling like someone was hammering my forehead and cheeks, and when the inside of my nose looked like cobweb covered hamburger (sorry for the gruesome but that’s what it looks like folks).  Now, I’m not so symptomatic and I’m thinking “well, is this ENT guy really gonna see anything if I go on Friday?”  I think I’ll keep it.  At the very least, we can discuss whether there is a clotrimazole or nystatin nasal spray, and how I can get in to see him a little more promptly if/when this comes back.

Mr. Patient is still sick.  He’s seeing the PCP on Thursday and has been trying to get them to call in labs for him before hand.  While I do like our PCP, his office staff is…well, let’s just say that sometimes they do not function as a well oiled machine.  Mr. Patient plans to keep the appointment, not skip out on it, but it’s a late appointment Thursday.  Say the doc does request specimens for the lab…there won’t be time to go to the lab after the Thursday appointment.  So you go Friday.  But you can’t drop off Friday, you have to pick up the collection containers, then bring them back…but it’s Friday so you can’t bring them back until the NEXT week.  You see the dilemma.  It just drags on and on and meantime Mr. Patient suffers with running to the bathroom 6 to 8 times a day.  He’s not a thin man, but he’s loosing weight now after a week of this.  And it’s a little creepy, a little disturbing.  It’d be good to know what he’s got, or to know that he’s got to move on to a GI doc if the specimens are normal.  Because as we know, getting that first appointment with a specialist, even a not very special one, can take months.