Peachy

Peach smoothie = super yummy.  I basically made a slightly less banana-y banana one and added two of those little cups of diced peaches you can buy at the store, plus a dash of ground ginger and a swirl of seedless strawberry puree.  I’d have taken a picture but it was too damned good to stop and snap a shot of.  Maybe the next time I make it, I’ll manage to take a picture before I chug it down.

The strawberry puree/sauce came out excellent.  I found that a fine wire mesh strainer was enough to take out the seeds, although I did buy some cheese cloth too in case the strainer didn’t catch them all.

Also on the menu this week is butternut squash soup (well strained of course).  Threw in some potatoes to give it a little body.  It’s not as good as the potato soup but then soup really does need to sit a day or so in the fridge to get to its best, I’ve found.

So yesterday I finally hit almost 1800 calories, for the first time in a few weeks.  I’m thrilled.  I know I’m still not getting a very nutritionally whole diet, but I think I’m doing a little better on the intake.  It’s a lot easier to do on the weekend.  I’ve been plotting out my food using an app for my iPhone and you can really see the weekends in terms of calories and weight.  I also bought a nice water pitcher that has a fruit infuser built in so I can make berry water at work. I do NOT drink enough hydrating liquids.  This I’ve known for a long time.  My husband says his brother’s the same way.  He once spoke to my husband about it, and it sounds exactly like me.  He says he just forgets to drink, then when he remembers that he hasn’t had anything to drink all day, he’s usually too busy to stop and go get something.

I would do juices and gatorade-type stuff except they absolutely kill my teeth.  Reflux has done a number on the enamel, which means they are porous and sensitive.  Even watered down, fruit juices mean I can barely stand to brush from the pain.  I drink them and ginger ale sparingly and with water or a ton of ice, and only through a straw.  Which leaves water.  But I do avoid it.  I don’t know why.  It’s largely psychological, habit, but also I do not experience thirst like other people I think.  People like my husband or sister, who both drink quite a bit of water, tell me that they get very thirsty if they go more than an hour or so without a drink.  Seriously?  I could go a day without anything to drink other than my morning coffee and if I didn’t remind myself to stop and get some damned fluids, I’d dehydrate myself right into a hypotensive episode.  WTF?  I can’t change whatever is causing that lack of thirst, but I can try to change the habit.  I decided that if I make water something that is more of a special drink, maybe I’d drink more because I do like my little rituals.  Hence the pitcher.

back to the vitamins

Not pills this time.  I tried a couple of days of vitamin pills recently, bad bad bad.  I’m now on the hunt for a liquid vitamin that doesn’t taste god awful.  At the drug store, I found a pediatric brand.  It was horrible.  On the label, it says you can mix it with formula to improve your child’s tolerance.

There is nothing on earth that you could mix it with to improve tolerance. My 8 hours of truly foul vitamin burps convinced me that this thing is child abuse in a bottle.  There’s got to be something better.  And I’ve got to find it because I am down to 123 lbs. I was 132 on May 8th.

I’m tracking my calories, trying to figure out where I can supplement.  On my good days, I am managing to eat nearly 1200 calories and a large amount of that comes from empty sugary ginger ale. The big problem is meal size (necessarily very,very small) and what can be eaten during the day that is ok for me to eat.  I can’t eat dairy, so quick snacks of pudding and most shake-things are out.  I tried a “suitable for lactose intolerance” nutritional shake.  Also nasty, and strangely burny going down – left my mouth and throat feeling raw for hours after.  I have no idea what was in this excessively sweet chemical soup brought to you by Nestle, but I will not be doing that supplement again.  Like the liquid vitamins, the liquid nutritional supplements don’t come in sample sizes.  And neither is cheap.  I do much better on the weekends, when I can eat my home-made food frequently.  But until I  can bring in a full sized fridge, a blender, and a place to wash the many dishes I accumulate eating like this, I’m sort of stuck on work days eating a lot less than I want to and should eat.

My two favorite few things I’ve made which are very good, not high fat (fat slows down gastric emptying), and have some reasonable nutritional value are potato soup and banana smoothie.  I utterly suck at cooking from a recipe, or paying a hell of a lot of attention to quantities as I am making up a dish, so take the following amounts with a grain of salt (no pun intended).

Soup:

  • About a pound of potatoes, peeled
  • A few thin slices of onion
  • Half an apple, cored, peeled, and sliced thin
  • about 1 tsp olive oil, 1/2 tsp clarified butter (less lactose in clarified butter, I am to understand)
  • 2 cloves of garlic
  • Rubbed thyme
  • Rubbed parsley
  • About 6 cups of chicken broth (I used prepackaged low fat)
  • 1-2 cups lactose free reduced fat milk

Par boil potatoes in water.  While boiling:  saute onion and apple and roast the garlic cloves.  My no-fancy-dish roasting technique includes cutting the bottom off the unpeeled cloves, making a little cup out of a doubled up square of aluminum foil, pouring in a wee bit of olive oil, and then folding the foil up on itself.  Pop it in the oven at about 350 until you start smelling that sort of nutty garlic smell.

When the potatoes are mostly soft, I drained them, used a masher to partially mash up a few, and then put in half the chicken broth and returned it to a boil.  I added the spices, apple and onion, and garlic while it was doing this second boil.  Boil until the potato is completely falling apart.  Let it cool a bit, add some of the cold broth to help cool it down, then ladle it into a blender.  You can blend hot too, I just don’t recommend it for safety reasons.  You’ll probably have to blend in batches due to the quantity unless you have a crazy big blender.  Once you have it all blended up, put it back in the pot, add the rest of the broth, put in about a cup of lactose free 2% or less milk, and cook on a very low heat.

Makes a lot – like a really huge mixing bowl lot.  So use fewer potatoes and less broth and milk if you don’t want all that and don’t want to freeze it.  You’ll need to stir it with milk or broth as you reheat it after a few days, but this soup was quite tasty, and got me through the week.

Banana smoothie, the low fat version.  This one requires a bit of advanced planning to freeze the bananas:

  • Two medium sized bananas, frozen
  • Ice cubes
  • Reduced fat lactose free milk

To freeze the bananas, let them get very ripe.  How ripe?  I went with still some yellow visible but lots of brown spots.  Peel and break them into smaller chunks, and place in a zip lock.  Freeze.

For smoothie, add frozen bananas, about 4 ice cubes, and reduced fat lactose free milk to blender.  Blend it up!  If you want something that’s more like ice cream, go easy on the milk.  I wanted shake consistency, so I put in about 2 cups of milk.  It made two large glasses and it was quite good.  I’m thinking of making some strawberry syrup this weekend, no seeds, no thank you.  I don’t need that gunking up the gut.  But I’d like the flavor and the vitamins.

Which brings me back to vitamins.  I found a brand on Amazon that got decent reviews, so it’s ordered.  If it’s tolerable, I’ll let you know (with the name, because I think it’s important that this sort of info be shared).  Wish me luck.  And if you have any low fat, low fiber, lactose free liquid/soft solid diet recipes that you’d like to share, send them my way!

(planning to try this weekend:  ginger peach smoothie…)

with gravy!

In late March, I was told at work  that I had to start attending EVERY staff event for my department.  By “event”, I mean social as well as work.  Many of these things are inaccessible to me, and some of them are just plain inconvenient.  I’m not sure if this came from my boss or my boss’s boss.  I think the latter, although my boss was in a funk and certainly wasn’t very kind about the demand.

I say that to preface this story.  The other part of the preface is that I am starving.  This is because my gut and stomach symptoms have gone nuclear and taken my nutritional options with them.  I’m not responding to the meds I’ve gotten for gastroparesis.  And on top of it, the lower gut motility has been a disaster.  Landed me in the ER once, and two weeks later I had another round of the cramping passing out horrors. I have to be really careful about taking the meds I used to take for that pain because they slow down the gastric emptying even more.  For the most recent episode, the staggeringly bad pain did not last as long as it had the day I went to the ER, so I guess that’s something.  Something to be happy for. I’m not sure that I can take credit for having managed it better.  Just luck of the draw I think.  That’s how it feels anyhow.  Since meds and activity do not seem to be helping with the gastric symptoms, I am trying diet.  Liquids, no fiber, no raw veg or fruit (i.e. smoothie with strawberries is out), and oh yeah I’m lactose intolerant and I’m still trying not to have high nickel foods like chocolate since that has seemed to help with the mouth sores.  

This does not leave one a lot of options for food, and most of what it does leave is home made, hard to transport, is one more heavy thing in my bag which is already black-hole dense, requires refrigeration and reheating, and so hard to eat between meetings and social events at work stuff.  I’ve asked for a nutrition consult, and I will get one in mid June. In the meantime, I am at 125 lbs now, which is 7 lbs less than I was two weeks ago.  I downloaded a calorie app (not too bad, “My Plate“) so I can see how I’m doing.  I am not a good judge. At some point in the starvation mode, you kind of stop consciously thinking about food.  Last night, when  I did eventually eat, I added in a half a bowl of lactaid milk based vanilla pudding.  I figured that’d pump things up some…but it turns out not so much.  This is why I need a calorie app.  What delayed my eating last night was a social event at work.  We had to take someone out to dinner.  And dinner was about a half mile walk from the office, on a hot day, with coworkers who walk to fast, on rush hour pedestrian traffic-filled sidewalks of Big Northeastern City.  My knee and ankle stopped complying as we turned down the last cobblestone street (oh yeah, big old northeastern city) – at least I made it almost there before the pain started.  We got into the restaurant and my heart sunk when I saw that the host was leading our party up a flight of stairs.  Oh god.  Ok.  Up I went.  And around the corner there was….another flight of stairs.  Holy shit.  So there we sat, perched on the edge of the top-most level floor which was basically a large balcony with uneven floors.  My vertigo/dizzies have been acting up so I sat with my back to the edge – which pointed me squarely at the bar and TV.  

While my coworkers discussed what delicious items they would be ordering off the menu (which had no soups, no baked potato, so no food for me), my attention was drawn to the TV where a heaping spoon full of food was zoomed in on as it gently rotated just enough to let the chunks of food slowly slide off, followed by a drip of gravy.  “Man, that looks good” I thought to myself, only to burst out laughing a second later when I realized it was a dog food commercial.

Toeing the line

Last night, my toe decided to just pop out of joint.  My poor husband, who’s been through quite a bit this past week including an exhaustive post-ER follow up visit yesterday with the GI doc, was unceremoniously awakened to the sound of me in pain.  It goes something like “fuck fuck fuck fuck fuck….” through gritted teeth.  “It’s my toe.  It’s just my toe, I tried to get back in bed and it popped out.”  I wanted him to know it wasn’t something critical so he wouldn’t be too alarmed.  The reason I was up was that the reflux was beyond horrible, so I had to get another pillow, then back up onto the bed and YOINK! out went the second toe on my right foot.  I got it back in, waited a bit, hesitantly tucked myself under the covers, and then ZOINK out it went again, this time with prejudice.  That’s when the profanities started.  Then it began waving itself around like it was on a float at a parade.  Damned freakish long toe.  It’s amazing how high up it hurts when it does this.  So unpleasant.  I could understand if I had done something odd with it, like sit with it bent up under me (a typical posture) or try to pick something up off the floor – I have crazy monkey feet and those bendy joints, so I can pick things up with my feet and put them on counters, tables, etc. I don’t pick things up with my feet anymore though, my mantra has become “just because you CAN do that doesn’t mean you SHOULD do that”.  I believe all of us hypermobile types should get this inked onto our limbs.  But I did nothing strange.  All  I did was use it like a plain old toe.

Again, I say, so unpleasant.

Got a free late night leg and foot massage out of it, but as nice as that was, I’d have taken a night without that pain on top of everything else and without waking up my husband over that.

tricky ol’gut

It’s the master of tricks.  My gut has a new one.  It’s called “lay there and don’t do anything.”  And just because that’s what’s going on up top, doesn’t mean that’s what’s up in the lower GI.  Oh no.  It does not.  My gastric emptying study, called “a little slow” and “slow” by an ER doc and my GI doctor (wait, what?  ER?  Yeah, I’ll get to that in a minute) is slow enough to count as officially gastroparetic (my made up adjectival form of “gastroparesis”).  But my lower GI needs to be told that part because it still has the raging kicking my ass in steel toed boots thing going on.

The result is not good.  The result is an increase in those puke and pass out from the pain on the can events.  I had one Wednesday.  It landed me in the ER.  I don’t go there lightly.  But the pain this time was more than I’ve had before.  More severe, more intense, more unrelenting.  And the passing out.  And the puking.  It just kept cycling.  Usually, it’s a couple of cycles of horribleness with some resting in between until things work themselves out. And  when I say “usually”, I mean that this has happened before but prior to this year, it was about once every couple of years.  Now, it’s a couple of times a month.  And this week, there was no rest period.  It was pain at an 8, to use the tired old rather useless pain scale, peaking to a 10.  At 10, I will vomit.  At a sustained 10, I will pass out.

So off to the ER.  Via ambulance, because my husband didn’t want to tempt fate on the “no passing out” streak I think.  I don’t blame him.  “I’ve never seen you in that much pain” he said.  Yeah.  I’ve never had that much pain for that long.  And I’ve broken a limb, had endometriosis, adenomyosis, subluxations, and migraines.  I’m not a stranger to pain.

The ER wasn’t bad, the ride there was.  Rush hour traffic.  Bouncy no shocks ambulance ride.  I felt like someone had strapped me to a wagon and sent me down a rocky slope.

Best thing about the ER?  Two bags of fluids and IV antinausea meds.  I refused the narcotics.  The ER doc was really nice about it.  I explained, through gritted teeth, that I really thought a big gut slow down was behind this and I didn’t want to take something that would just slow it down more and put me in the same position in two days.  Please can I have some toradol?  Why yes, you can.

I slept for at least an hour straight after that.  Then waited for the GI doc to make her way down.  All total, I think I was there for about 7 hours but I really don’t know since I have no sense of what time I went in.  They’re crafty about where they place the clocks in the ER.  I woke up, felt like I needed to go again, tried, and the puking came roaring back.  So more antipuking meds for me.

GI doc came in and told me that the gastric  emptying test was abnormal (yes, I did see that in the online record that I checked after playing phone tag with you for over two weeks). I had done a lot of research on gastroparesis/delayed gastric emptying in the meantime.  I had been trying to take care of it myself and hoping that another crisis wouldn’t hit before I saw her again and was able to make a treatment plan.  Didn’t work.  So here’s the plan.

  • Low dose oral erythromycin
  • Possibly start reglan or domperidone as a rescue med (yes, you can take them that way, I am told)
  • Even more Zofran
  • A change from amitriptyline to nortriptyline
  • Modified diet

I also asked about my other meds.  She didn’t seem to think that any of them would be the culprit in these exacerbations.  I disagree, and I think my migraine meds are largely to blame.  Tizanidine and fioricet.  So I am going to see a new neurologist to try to find a less gastro-paralyzing migraine treatment protocol (my former neurologist left the state in a huff in October after sending a perplexing letter to his patients with oddly right-wing wording about the difficulties of being a provider in the Northeast.  The letter was dated a week prior to when I got it, and it gave me two weeks to come and get my records, which I didn’t have time to do in those two weeks.  Thanks guy!)   GI doc and I talked about diet, about small meals (I eat once a day on work days, and not much at that during the high nausea times….my ER bloodwork is showing signs of that practice.)  She was a little dismissive of the difficulties I’ve had finding a dairy free liquid supplement.  If/when I ever do get a meeting with the dietician, that is first on my list of things to talk about.  She also said I had to go low fat, even liquids, which goes against what I’ve read….that GP patients can usually tolerate fats in liquids.  And downplayed the “no fiber” thing.

Color me not delighted.  At the whole thing, but in very large part because of the sense I’m getting that she feels that drugs can do no wrong and that drugs alone will fix this.  I do not love that approach.  I am on a lot of meds.  One of the first things anyone with slow gastric emptying should do is examine their meds to see if there are any that might be responsible and try to find ways to modify them.

So there’s the new trick.  I’m exhausted from these.  I spent my recuperative day off yesterday hoping for a normal bowel movement and looking up new therapists.  Not a lot of luck on either front.  I have a list for the latter, but no one really jumps out as super in terms of specialty and location.  Location is important because if she is too tough to get to, I will not go when I am fatigued or when my routine is complicated by difficult to manage symptoms.  I do need one though.  This new trick has really hit me hard.