Sad today

I didn’t wake up with racing thoughts today, but I woke up sad.  I cried in bed several times before finally getting up, asking my husband to hold me to comfort me some through it.

It’s been a really tough couple of months, and the return of the anxiety has been hard to take.

I got through yesterday ok though, I managed to not take any ativan even though I woke up with nausea.  It resolved as the morning went on.

Today, I’m sort of on the edge of anxiety, I can feel it tugging at me in the background.  I know if I had something to do today, something I could do and that was more engaging than some solitary pursuit, I would feel better (emotionally) about the day and have some sort of hope that I won’t be spend the day alone fighting bleak thoughts and fear.  My stomach’s not too upset this AM, but I feel weak, dizzy, and my vision is spotty even just sitting up.  I’m sure my BP is way down.  I don’t even want to check it.  Too depressing.

My GI doctor called back yesterday after a third call.  She wants to do a Ph study and an esophageal manometry test. I explained how the last esophageal manometry test went when I was a teen…i.e. the doctor couldn’t get the probe down my nose because it’s too narrow up in there, so he ended up putting it down my mouth.  I got the distinct impression from my current GI doctor that dropping the probe down my mouth would not be an option.  “We’ll try it…” down the nose, was her comment.  Oh that and take a (whole) ativan before I come in for the procedure.  Um….okayyyyy.  Obviously she doesn’t get that it’s not just a matter of upset, it’s a matter of anatomy (which leads to pain, which leads to upset).

Still beating my head against the wall with trying to get in to a new GI doctor.  Still calling every morning and getting the news that there are no cancellations.  I wonder if I should call later in the day?

A friend is supposed to come over later in the AM for coffee/cards.  I hope that goes ok, I hope I stay well enough to do it.  I really could use the company and distraction.

I was planning on starting/trying the evening primrose oil and flaxseed oil today. I got them Monday to try to help supplement my way out of the essential fatty acid deficiency my labs showed back in June (and that was only one week into the starvation diet I’ve largely been on since then).  I worry about trying them…side effects include upset stomach, abdominal pain, nausea, and diarrhea.  So basically, more of what I already have.  Errrrg.

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anxiety better this AM, stomach worse

Yesterday was pretty stressy, no retching at least.  So no ativan.  And I did go out briefly, to the health food store to look for supplements for my essential fatty acid deficiency.  But there was lots of easily upset and concerned, far out of proportion with what was warranted environmentally.

And there was the growing discomfort and nausea.

And there was the GI doctor not calling me back again.  I’m wondering if she’s on vacation.  I would not be at all surprised.

This AM, I woke up with a little bit of that racing stressy thought shit, but I was able to control it more effectively.  Nausea and abdominal pain aside, I actually was in a nice mood this AM.  Slightly less now that I’m up and remembered I have to call the possible new GI doctor’s office in a few hours and go through that whole “cancellation/hopes up” crap, but I’m not majorly down about it.  Just slightly deflated.

Had some juice yesterday, tiny amounts, very diluted (mixed some watermelon juice in with my first liter of water, mixed some spinach juice in with my early afternoon broth).  I am wondering if last night and today’s extra upset stomach is due to that.  I hope not.

a little better yesterday, not sure yet about today

Yesterday, I woke up stressy but managed to get through the day without an ativan.  My general rule is retching from anxiety or too much nausea from general awful GI issues = ativan.  Although right now I’m trying to struggle through the nausea without taking any since I worry that I am having rebound anxiety.  I had tried not taking any benadryl the night before, to see if maybe the benadryl was having some sort of rebound effect in the AM.

It kept creeping up on me yesterday, and I managed to dodge it pretty well.  Either doing deep breathing (not convinced that helps…or that I’m doing it right) or keeping busy.  I took a walk in the AM before it got hot.  Not a long or fast walk, and there were lots of rest breaks on the way, but I wanted to try something new.  I busied my way right into two hours of pain, dizziness, and intense fatigue though by overdoing it cleaning the bathroom.  I went out with my husband to the mall and bed and bath to look for shirts for him (not a lot of luck) and juice containers for me (just bought a juicer).  I was ok in the stores, but riding in the car, between stores and on the way home, I was having anxiety again.

Last night, by a few hours before bedtime I was feeling fine anxiety-wise.  I was not feeling fine gut and headache-wise but, well, at least it wasn’t everything.  I didn’t take any benadryl again, so we’ll see how that goes today.  I woke up stressy as hell today, but did the deep breathing in bed.  I managed to work my way down after doing that for what felt like forever.  And I even got up before my husband today, which is something I haven’t done practically since this started.

My juicer came yesterday.  I’m excited to try, slowly, some juice today. I was going to start with watermelon, very watered down watermelon.

from bad to worse

I had to cut my visit with my friend short yesterday on account of intense nausea.

Not to mention anxiety.  it’s not as bad as it was, but it’s creeping up and that disturbs me.  I know this is triggered by the difficulties managing my GI symptoms and diet, and the concerns about having to wait so long to see someone new.  I tell myself that I can hang on, that I’m strong, and that it’ll get better but it’s hard.

I called the potential new GI back yesterday (through nausea-gritted teeth) and asked if they had a cancellation list.  No, they told me, but it’s ok to call every morning and see if there have been any cancellations that day.  “Are you sure I won’t be a major pain in your ass if I do that?” I asked.  They assured me that I would not.

I didn’t call today because it’s supposed to be ungodly hot out today and I need to rest from yesterday.  I decided today will be a rest, rehydrate, and try to “eat” more than 600 calories.  I set my phone timer so that I can drink a half a shake every hour, if I keep it up I should get in about 4 shakes today (I have to stop “eating” by 6:30 or the reflux is terrible).

But tomorrow,  I am going to call.  I printed out my reports, I have my hopefully soon to be former GI doctor’s notes from last year (not from this year but I can get them if the new guy wants to take me on as a patient).  I feel like so much is at stake here.  At the urging of an online friend from a patient forum over at Inspire, I tried looking into the motility specialist at another of the B.A.T.H.s in town.  Well, actually what I did was call my insurance to see what I would be charged if I saw someone at the other BATH that is out of my “preferred network” (more on that in a sec) and found out that for pretty much every procedure a GI doctor would do, I would have to pay $150.  Only an ultrasound, plain x-ray, and lab testing would involve no out of pocket costs.  So endoscopy?  $150.  Ph testing?  $150.  Esophageal manometry?  $150.  Great.  I can’t afford that.

I have “good” insurance.  If my current GI doctor did any of these tests, I would have no out of pocket costs.  That’s because my current GI doctor is in the “preferred network”.  The “preferred network” exists because my insurance is through my husband’s employer, which happens to be a monster health network that comprises two of the better known BATHs in the city and several smaller hospitals to the north and west of the city (but not to the south, oh no….never down here.  The proximal southern suburbs of the big old historic city are not wealthy like the proximal western suburbs – as for the north, I’m not sure what that’s about but the monster health network managed to worm their way in up there but not down here).  Anyhow, my husband is a researcher in a lab that is part of one of the hospitals in the monster health network, and as such, he can only choose an insurance plan that has this “preferred network” shit, where you pay a lot less for going to doctors and facilities in the monster health network.

Sounds just fine, although certainly nicer if you don’t live south of the city, except that I have to see what I call “very special specialists”, and these are hard to find.  Some of them just don’t exist in the monster health network, for example, they have no autonomic neurologists in their network. They had one guy who was just starting out, but his mother got sick and he took an indefinite leave to take care of her.  The monster health network has exactly TWO motilty specialists, both at the same practice.  I see one (my current and hopefully soon to be former GI doctor), and have tried to transfer to the other but was denied that privilege by the office management.

Which leaves me very much shut out of getting the help I need.

I woke up this morning with the anxious chatter in my head again.  This is the second day of that, I hadn’t had this for a few weeks and I really thought it was over.  But I guess not. I think for a while, I’m just going to be extra susceptible to excessive anxiety during stress.  Unfortunate, to say the least.

Bad day for eating

Yesterday was not a good day for eating.  I managed to have only two shakes.  I think it’s because I pushed it and tried to have a small amount of peeled, baked potato in the early afternoon.  It did not sit well.  I was so bloated and full from just the small amount I ate, which was about a 1/4 a potato.  Prior to starting the mirtazipine, I was able to eat this, but between the mirtazipine, the ?gastritis?, then the lyrica, I guess I’ve lost that ability.  For now.  That is what I am telling myself.  That it’s just for now.  The lyrica constipated me, and I never do well when I’m constipated, it’s like things are backed all the way up.  Or maybe it’s just a more obvious indication that something has slowed everything down.

I’m hoping that this improves as the lyrica gets out of my system.  I’m trying not to get too upset about it.  It’s tough.

I also tried the “three PPI” dose yesterday, well, sort of.  I took my AM dose, and then a half hour before I ate the potato, I took another.  While I didn’t have bad heartburn in my usual pattern (2 hours after eating), I did get it at night and woke up with it this AM.  I’m not sure dosing with PPI three times a day is a great idea.  I would think, if anything, upping the zantac to three times a day and maybe changing PPIs would be a better idea.  In all the papers I’ve read on PPI treatment for GERD, I’ve never seen references to trying patients at three times a day for PPI refractory reflux/heartburn.  Twice a day, yes.  Changing PPIs, yes.  But three times a day?  No.  If someone reading this knows otherwise, please let me know.

I’m starting to get stressed about this.  I feel like without adequate control of my slow gastric emptying, there is no hope for controlling the reflux, i.e. the reflux and heartburn are symptoms of the gastroparesis, not separate entities to themselves.  And I am out of medication options for the gastroparesis.

Feeling a little hopeless today.

getting by

I’m back on the ativan, for the nausea and vomitting.  I think I caused the nausea myself, trying to hydrate up my super low BP, I drank fruit juice and took electrolyte tablets.  I am thinking the electrolyte tablets were too much for my stomach.  If this is what it is, and if it holds to the pattern (I think this happened before, it feels very similar to the cycling nausea from January to March), it’ll take about a week for my stomach to heal.  In the meantime, I’ve lost more weight and I need to be able to eat (and hydrate) so I don’t end up back in the ER.  So I am taking low doses of my ativan.  I was prescribed 1 mg three times a day.  The most I’ve taken is 2 mg, divided doses, i.e. one mg in the AM, then a half in the late afternoon when the nausea comes back and another half before bed.

Yesterday was tough.  I was feeling better BP-wise, and had the nausea under some control, so I went out to do an errand and visit a friend (I have a friend visiting while my husband is away, she drove us out and around yesterday, I’m still not up for driving).  Healthfood store for vitamin K supplement and licorice supplements (I figure it’s supposed to help your stomach and I could, quite frankly, use the blood pressure elevating side effects).  Then over to my other friend’s house for a short visit.  Very short.  I got dizzy, headachey, super fatigued, and nauseous and had to leave.  Unfortunately, as short as it was, I waited too long and forgot we needed to stop somewhere to get my visiting friend dinner.  That was a bad ride home.

Some retching that evening.

And less food that I’d like.  I’m down over 10 lbs now.  About 15 total since this shit all started in early June.

And my GI doctor still hasn’t called me back.  Not that she’s much use, but I figured I should update her and let her know (she told me to call).  Jeez she really sucks.

Husband’s coming home early from his conference tonight.  I’m deeply grateful, since my visiting friend can’t stay as long as she’d initially thought, which was going to leave me all on my lonesome tomorrow and I’m still feeling crappy enough on and off throughout the day that being alone really sucks.  I know there are people who have no other option, but if you did have the option, you’d take it.  So I’m taking it.

It’s probably going to be a long medical week next week.

Wish my good luck and some extra spoons.

Not quite an emergency…

But in the emergency room nonetheless.  I chose carefully, avoiding the BATHs since it’s July and they are awful unless you have a really good reason to go there.  I don’t, or didn’t yesterday.  I do not go to the ER under circumstances like these to get answers.  That’s what your outpatient docs are for, or if you’re really fucked, that’s what a few days to a week of inpatient is for.  But ugh, inpatient at a Big Ass Teaching Hospital in July?  No Thank You!

Then there’s the big community hospital where my primary is on staff.  He’s only marginally on staff, he’s more appropriately “affiliated” which means i suppose he can write orders on me.  If I thought I was going to be admitted, I’d go there, but I’d prefer it as a direct admit than an ER conversion.  And again, I have a sense of how these places operate and of the “sick person” narrative from the doctor’s perspective, and I did not yet seem to need inpatient.

So given that I just needed urgent management of fluid status (for the floor falling out of my blood pressure readings, yikes, that systolic of 69 was a wake up call, and I’d have thought it an anomaly if my other BPs around it hadn’t been 77, 75, 72, and 70).  And given that my strategy of managing it with PO fluids at home hit the skids when the nausea and vomiting started yesterday, and given that I was feeling worse and worse, my brain was just not firing, I was stumbling when I walked, walking into things, not able to open bottles I normally can open, getting dizzy even laying down flat on my back with my feet propped way up on the leaning tower of pillows, I decided that yeah, it’s time to go.

I chose the little community hospital in the affluent town where I live (I live in the not so affluent side of town, and I rent, so I am not affluent but I can take advantage of it’s ED services).  If you watched the show Parks and Recreation, think Eagleton.

So off I went to the Eagleton ER with hubby yesterday afternoon.  Hard to give my history, what with all the chronic crap, so I didn’t get into it too much except to say “I have a connective tissue disease that has a lot of autonomic symptoms….I have POTS, neurally mediate syncope, I don’t sweat appropriately in response to heat, I pee all the time, and I have gastroparesis.  So, with that all said, these last few days, my blood pressure has really tanked bad – lower than it’s ever been when I’m not passing out.  I’ve been trying to manage it at home with rest and PO liquids, juice and water, gingerale and water, and electrolyte tablets, but today I woke up with abdominal pain, intense nausea, and vomiting and retching.  I only vomited once, but I’ve been having dry heaves all day.  I can’t get enough fluids in, and I can’t eat, and I feel terrible so I think I need to get checked out and try to get some IV fluids at least.”

Then, when triage was over, I hopped up, and promptly sat right back down with my head between my knees saying breathlessly, “Oh, that was dumb, I need a second”.  One quick wheelchair ride later, I was laying flat on a bed in a gown with a competent nurse hooking up the monitor and IV line.  Do not pass go, do not go back to the waiting room.  Go directly to a bag of IV saline, wide open.

My BP didn’t do anything too funny in there.  Of course.  Because I am stressed when I’m in the ER.  My systolic did drop to 38, which won me a commode rather than a walk to the restroom.  “Because then you’d fall, and that’d suck, plus it’d make me look bad…” said my nurse.

So two wide open liters of fluids, one dose of IV valium (for the nausea), and a little bag of IV protonix later (mmmmm, thank you, says my hurting belly), I was feeling much less dizzy.  The nausea went from a 10 to a 3, although by the time I was leaving it was back up around a 5.

And this AM when I woke up, it was back at an 8.  So I took an ativan.

Because Zofran isn’t touching this shit.  And I’m not taking another dopamine-affecting med again, not since I’m pretty sure that all of this mess started with a dose increase of Reglan that gave me some of the nastier Reglan side effects.

Follow up with Primary, follow up with (useless) GI doctor.  I called both this AM.  They love getting these calls on Friday, right?  ;p  Well, I’m not looking to do much more on this until next week.  I want to know that I can take something like Ativan for the nausea, at least until my gut heals (I think I fucked it up with acidic juices and salt/electrolyte supplements.  it’s happened before, but I was in denial and so worried about my BP that I went ahead and took them anyhow….booo, stupid, bad idea…I know).  I also stopped the herbal remedy for my gastroparesis that I had been taking, Iberogast.  Because I looked it up and it has “9 different herbs” in it, 8 of which I think are considered to be ones which can lower blood pressure.  So maybe taking that is not such a great idea.  At least not right now.

Special

“Can you order a special meal, like they do on the airlines?  when you fly?” This is what the HR rep asked me at a meeting this week when we were discussing difficulties I am having with the departmental dinner that I was ordered to attend.  Handily, I had printed out a two page listing of foods one can eat on the various stages of a gastroparesis diet, and it was sitting on my desk someplace.  “Oh, well, it’s really restrictive…my diet.  Hang on, I have it…”  And wow, you’d have thought I had just started unbuttoning my pants to moon her or something.  She literally reared back in her seat and exclaimed “No, oh no you don’t need to show me…”

Now, let’s take a moment here to go through all of the ways that this sucked.

  • Primarily, if I don’t NEED to show her, how about she trust me when I say that eating out is not gonna work for me without a shitload of hassle that is going to sap my resources for the next day?  How about letting me make that call?
  • I understand that HR is sensitive to “forced disclosure” but this was not forced.  Well, except by her presumption that I can’t make a reliable judgement about what I can and can’t do given the intrinsic resources I possess and the external resources that my employer makes available to me (i.e. hard to plan whether you need to haul a heavy bag of food around Ye Olde Historic City when the people planning the event can’t tell you even what time it starts let alone what’s on the menu).  This was, given the conversation, me CHOOSING to try to educate her.  And her acting like I just did something shameful.  Nice.
  • The assumption that I fly, that I go out to restaurants on my own time.  And not just assuming, but hanging on to this assumption despite my telling her that I am very very limited in my capacities to get out and do things.  Did she just think that I was conveniently unable to do “social” stuff or travel for work?

Really, the first one was the kicker.  It underlies all the other problems I had with that, delineable and not.  I have my own personal struggle with whether to educate or not, most often at work but sometimes with the few friends I have left and family.  Needing to explain to my brother recently that no, I can’t go out to brunch with him because it would be an exercise in frustration and martyrdom for me to sit at a table while everyone else ate yummy food and I nibbled on a piece of dry toast.  He knows what’s up.  And still.  I struggle with whether or not to do it because I am, by my nature, an advocate and an educator.  I explain things.  Sometimes too much.  Woe be to the workstudy student who asks me what a word means.  I’m old enough now to not (usually) launch into a lecture on etymology and usage and to ask “How detailed an answer do you want?” before I go there.  I am the same way with the health stuff.  I have given quite a few impromptu lectures now on autonomic function (which I barely understand – but which my understanding of significantly surpasses what is possessed by most people without dysautonomia).  And yet, despite educating and offering this information, I see little change in the people I offer them to.  This is where the struggle comes in, and this is where I am likely to get pissed off.  I dislike disclosing to people there is no need to, and I dislike when I disclose and discuss with people and they fail to incorporate the knowledge into action.  E.g. “super fun lunch time” invite I got from my boss recently.  I KNOW I have discussed my functional limitations with her as they pertain to work activities.  Can’t stand up for long without getting faint; walking is fatiguing and sometimes very painful; can’t tolerate hot environments without risking passing out; can’t eat much and since I don’t know how food I didn’t make was prepared, really shouldn’t eat it unless I want to find out the hard way that it had too much fat or fiber or some other gut slowing ingredient; can’t delay eating or my blood sugar drops.  And yet, here’s the invite for our office to go (walk 3/4 mile) a tourist packed, overheated food court.  “Super Fun” indeed.  It is everything I can’t do.  Walking crowded city streets with ice and snow and a sizeable number of stairs on the shortest path; wandering around inside the food court, dodging clueless hunger crazed tourists; food I can’t eat; nowhere to sit; nowhere to put my coat and bag (and I would have a bag, for my water, my meds, and my food that I can eat).

So here’s someone I’ve educated and who has done nothing with that information.  Nothing useful at least.  And it puts me in an awkward position of having to say “no” to my boss, who is not good with being said “no” to.  And that is why I do struggle with the disclosures.  But that is my struggle.  I don’t need to add to that with attitude like the HR rep’s.

slightly sleepier

Well, I’ve been doing “screen avoidance” for at least an hour before bed for a little more than a week and I think it is helping.  A little.  My bladder’s still waking me up, and I still have at least one drenched in a cold sweat episode a night, but at least I am not feeling like I am just napping instead of sleeping.  So hooray for paper books.

I’ve also added molasses into my diet this week.  I forgot how much molasses makes everything taste like gingerbready christmas.  I added a little bit to the pumpkin pudding recipe and a lot to what I’m calling “gingerbread bread pudding”.  Apparently it’s a decent source of iron, which is good since I cannot take iron supplements without them wreaking havoc with my stomach and gut.  So far, no havoc.  It’s got magnesium too, which I could also use since mine has clocked in low before.

So this week I have tasty christmas-y gingerbready goodness and some sleep, which sure is a welcome change.  I’m up to a pretty stable 125 lbs too, also excellent, and so far this diet isn’t worsening the gastroparesis symptoms.

Got my eye appointment today.  I called yesterday and asked if they had the forms electronically because I have such a hard time writing them out with no time and a cramped hand.  I truly have dysgraphia, always have – the nuns were beside themselves with my handwriting in 1st grade and my second grade teacher made me put my pinkie finger in between every word on the page to keep them from running into each other.  It’s actually gotten much worse as I’ve aged.  Not sure if it’s a neuro thing or what, but it hurts like hell to fill those damned forms out in the office where you gotta write write write and no time to take a break and massage your hand.  By the time I get to the bottom of the first page, it’s turned into totally illegible scribble with missing letters, swapped letters, and totally deformed letters everywhere.  I remember having to soak my hand after exams in college and grad school because it hurt so much from trying to force well formed letters onto the pages of the blue books.  If the doc isn’t a dick, I’m going to mention to him that I think they should have electronic forms.  It’s a frikking eye clinic at a frikkin eye B.A.T.H..  If anyone was gonna have electronic forms, you’d think they would!  The guy I talked to about it yesterday was like “duh? disability wha?”  I’ll call him a Jude, the boy equivalent of a Judy.  He was definitely a Jude.  So wish me luck at the eye doc, hoping he’s not a dick!

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).