None shall pass…

…out.

I passed out again.  It was on the way to the gastric emptying study two weeks ago.  And so far, my husband has not yet broken his streak of handling this so well that I do not actually and completely lose consciousness.  So should we call it passing out then?  Well, we can call it a “near syncopal episode” but most people don’t know what it means and plus I get funny looks for talking fancy.  The girls (and yes, they were girls) at the nuclear medicine suite clearly didn’t understand.  At my time 2 scan, one of them told another that I was “feeling a little dizzy”.  I said, wearing my “bite me” bat t-shirt (an unconscious clothing choice that morning):  “No, I’m not a little dizzy.  I passed out in the car on the way here.”  Because when I lose all my vision and hearing, and can only make animal noises and retch while sweat is pouring off me in buckets and I am a shade of green white with rolled back eyes in my zombie looking sunken sockets, I count that as a level way past “a little dizzy”.  A little syncopal.  “She’s a little syncopal today…”  That’d be better.  By scan two, I insisted they scan me with the chair behind me as I’d requested at outset, you know, when I told them about the syncope in the car.  It was that repeated request which prompted Girl A to say to Girl B that I was “a little dizzy”.

Oh girls.  I should’ve made them check my BP.  Maybe that would have made a difference.  70/ anything usually raises a clinical eyebrow or two.

My husband is very proud of his record.  While I am extremely happy about it, and also pleased that he is handy with dealing with me when the upper brain checks out due to lack of blood flow, however the superstitious part of me thinks he shouldn’t tempt fate with displays of hubris, like issuing a triumphant “woo! unbroken streak!” on the way home after the test.  In some ways, his streak has actually made me more apprehensive about passing out elsewhere.  This is because I know that the reason I have not yet had a total loss of consciousness with him is because unlike most people, he actually does what needs doing when I am going under.  In the car, he helped get my seatbelt off and recline the seat way back, then put my legs up on the dashboard.  This is what I need when I am passing out. I need to not be upright, strapped into a car or plane seat (yes, plane.  I passed out during a landing in Brussels once).  Out for an evening with my friend the nurse?  Passed out.  All the way out.  At home on the toilet with ex-husband M.D., total loss of consciousness (again, upright and him too timid to come help get me off the can while it was happening – it was a narrow bathroom so on the can meant you sat with your knees practically touching the opposite wall, and boxed in between the sink and the tiny tub, hence the uprightness and difficulty getting myself off the toilet).

Why did I pass out?  I think a month of nausea and vomiting might have had something to do with it.  My normal horrible nutritional status has just taken a big nose-dive.  And while I try to drink, who wants to when they feel like it stops about halfway down their esophagus?  Now that we’re moving into warmer months again, I think it may be time to do the IVs again for a bit.  We’ll see.  GI follow up next week.  And in the meantime, I’m making soup and had the genius idea of buying some babyfood for lunch at work.  Yes, babyfood.  You empty liquids better than solids.  Let the good times and stupid questions roll!

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Gastroparesis

It seems somewhat paradoxical that my gastric emptying time is so slow.  When I say slow, I mean it’s basically down to a trickle.  Top line below is my result.  Standards are below that.

Gastric emptying was:
17% at 1 hour, 29% at 2 hours and and 69% at 4 hours.
According to accepted international standards using this technique, median normal values for emptying are:
31% at 1hr, 76% at 2hrs, and 99% at 4 hours.
10th percentile values for emptying are:
14% at 1 hr, 50% at 2hrs, and 94% at 4 hours.
I still haven’t spoken to the GI doc about these results.  Keep in mind, the week…no actually the day, that I had this study, we had a terrorist attack in my city.  The BATH where my GI doc is was one of the hospitals that saw a lot of trauma patients, and admitted quite a few of them.  So they’ve been busy.  I left them alone for the week, figuring that the last thing they needed was little old me calling up and playing phone tag with the doctor.  And that week, other than during and immediately after the gastric emptying test, I was blessedly non-nauseous and didn’t have any gastric pain.  I was joking that the radioactive egg sandwich must’ve done the trick.  The study itself was rather horrible.  On the way there, my blood pressure took a nose-dive in the car and I passed out.  Showed up at the BATH looking like pounded crap, then had to choke down the egg sandwich, and I do mean choke down.  Lots of retching.  But I got it in.  Huzzah for me.  And I got through it.  And it was a good thing too because given the apparently fast state of my lower gut, I would never in a million years have guessed that I have gastroparesis.
Last week, I called early in the week.  She called me back after 9:00 PM.  I was nearly in bed.  So I let it go to voicemail and paged her the next day.  No call back.  And here it is a week after I called, and two weeks after the test and we still have not spoken about it.  I only got the results because the records eventually became available in my online record.
Last week I ate bad things (not a lot of them but enough apparently) and the upper GI symptoms are back.  Started up Thursday night, Friday things were unmistakably bad again.  While waiting for my follow up GI appointment on May 8, I have been researching gastroparesis.  And I’m now trying to modify to fit the situation:
– Started taking papaya enzymes.
– Resigning myself to a diet that is as liquid as I can get it, a visit with the nutritionist and a recommendation for a liquid supplement that is not made from milk products would be really swell but in the meantime, I think I’m just going to have to deal with starvation and jello.
– No more tizanidine.  I really believe this is what has gotten my gut into the bad spot it’s been in a few times now.  Last week not only included a cupcake, several pieces of candy, and a very ill-advised pad thai.  It included several days of tizanidine on top of a few days of Levsin.  This is now going to be an unallowable combo for me I think.
– Chewing gum.  Helps the stomach think it’s time to empty.
– Heating pad on the abdomen.  It helps.
– Walking after I eat.
– When I do eat a solid, chewing really well.
– A whole bunch of Zofran.
– Just in case low acid levels are contributing to the slow emptying, I am cutting back on the PPIs for now.
– Weaning down off the Amitryptiline.
I’ve also got a list of questions I want to ask, including can we try erytrhomycin before we do reglan, can you take reglan as a rescue drug rather than as a long term prophylactic, and do you have a good neurologist I can see since I’m going to have to either stop or significantly limit the drugs I’ve been taking for my migraines.
Ugh.  This was a new trick I could’ve lived without.  I’m guessing it’s been going on for a while.  And it’s probably autonomic and/or EDS related, so things like the PPIs may not make a difference.

long lost people

Apologies for the long absence.  Tough times for me personally and up here in Big Northeastern City.  April is a cruel month.  I’ll post more about that later.

Last night, I got a call from a number I don’t know.  I recognized the area code as one from the woodsier part of Northeastern State but not the number.  Eh, that’s what voicemail’s for, I thought and let it go.

And then I got a text.  It was from one of my cousins and she mentioned that my mother (boo, hiss) had said she should call me about some medical stuff.  I had two sets of cousins for most of my childhood.  I say “most” because my mother was adopted and found her birthmother and a whole set of half sisters with kids when I was in my early teens.  So that opened up another bunch of cousins.  All boys, which was funny since the two sets I’d had up til then had been all girls.  Three girls who were my dad’s brother’s kids (although my dad came from a pretty large family, all my dad’s sisters had endometriosis back when that meant unaddressable infertility) and three girls who were my mother’s brother’s kids.  My mother and her brother were both adopted.  Remember that, it’s important.

The one who reached out to me was my uncle’s second child.  Another middle kid.  I have the following associations with her:

  • She was always very pretty, in a fairy-like way.  Gorgeous long blond hair on top of the delicate features she and her sister shared.  
  • Young.  Always so young.  All of our cousins were younger than my little brother, which meant that the eldest of the cousin sets was still my junior by some years.  The consequences of this are that although I felt an affinity for the middle daughters in both sets, there was a bit of a divide since in childhood social spheres, age does make a difference in peer relation. 
  • Peppy.  Not crazed with energy, but peppy.  
  • Easily injured.  It didn’t keep her down, but she did fall a lot.  

Seeing her text, I immediately called her back.  yeah, it was late and yeah I’m gonna pay for that today but I had been thinking of her and her family so much over the last few months.  I think it started around christmas time and has just been picking up steam.  Not a week has gone by where I don’t think of them.  We weren’t super close.  My parents were just kind of isolated and aloof so this meant we didn’t get really close with any extended family.  So I’m not sure why this branch of my tiny family tree was on my mind so much but it was.  And when I saw her text, I thought “ok if this doesn’t mean we need to connect, I don’t know what does.”  The first thing she said was that I sounded exactly the same.  It’s been almost 20 years since I last saw her, and that was at my first wedding.  I’d be surprised if I said more than a paragraph to her during that since I was stressed and running pillar to post and she was sick and down for the count some.

The next thing she said was “so I hear you’re a zebra too.”

What is up?  Health wise, I asked.  Turns out that my cousin has very likely got EDS, definitely has POTS, heavy on the “T”.  And endometriosis.  The list goes on but I don’t want to put all of her health info up here like it’s mine.  This is an anonymous blog but still, not my right.  Suffice it to say, we have a hell of a lot of overlap in clinical presentation.  Although she’s cold intolerant

I was staggered.  At one point, she said “I feel like I’m talking to myself.”  And I knew exactly what she meant.  “Are you sure weren’t not related by blood?”  Pretty sure.  But boy that is some strangeness.  “WTF was in the water?  Doesn’t it make you wonder if there was something in our environment?” I asked.  But it’s not like we spent a ton of time together or at each other’s houses.  We lived rather far apart too.  We were on city water, she was probably on well water given the rather rural town where her family lived.