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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by dyspatient on August 5, 2015  •  Permalink
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Posted by dyspatient on August 5, 2015

https://badturns.wordpress.com/2015/08/05/sad-today/

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.

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by dyspatient on August 4, 2015  •  Permalink
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Posted by dyspatient on August 4, 2015

https://badturns.wordpress.com/2015/08/04/anxiety-better-this-am-stomach-worse/

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.

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by dyspatient on August 3, 2015  •  Permalink
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Posted by dyspatient on August 3, 2015

https://badturns.wordpress.com/2015/08/03/a-little-better-yesterday-not-sure-yet-about-today/

Same

Woke up today the same as yesterday AM.

I had gotten through yesterday ok though.  Not great, but I made it without taking more ativan after the 0.5 mg in the AM.  No retching after that first round, prior to the ativan.  And I was fine last night, except for the massive headache and the super low blood pressure again (71/forty something).  So we’re back to that pattern.

Today, I woke up stressy.  My husband asked what the focus of the anxiety is in the AM.  It’s hard to say, it’s less concrete than it had been…I’m hoping that is a good sign.  Less concrete and so far, (oh god please let it not progress) less severe.  But in general, it’s about health, and my food intake, which is abysmal.  I’m barely making 900 calories a day, and that comes entirely from supplemental shakes, and I’m still having upper GI motility issues even just with those.  So that is the general focal point of my anxiety when I wake up, that and fearing the day will be another bad one.  I try to use positive self talk during these morning moments, but there’s only so far that’ll take you when your body and brain are just totally jacked up.

So I got up at about 6:30 after being awake but drowsy for at least an hour, still super sleepy, but paradoxically amped up, and increasingly so as the morning wore on.  Despite having the muscle tension in my arms and shoulders (which I feel as an unpleasant warmth), I didn’t take any ativan.  I managed to make it until 10:00, then the retching started, just out of nowhere.  It’s different this time from last, in that I’m not consciously having deeply disturbing thoughts when this happens now.  It’s more of a bodily sensation and a general feeling of difficult to check concern and worry (who can blame me at this point).  I did my deep breathing, relaxation, read for a while, all that helped I suppose, but my BP was still high (for me), showing that I was still clearly stressed.  Then, when I was up and in the kitchen, I think I had just thought that I should drink another half a shake, and then the gagging started…then the retching.

Hence the 0.5 Ativan shortly after, at around 10:00.

I wish I knew what kept this in check for the last few weeks.  I know I had been taking ativan on and off for nausea during that time, but I wasn’t waking up all stressed to the max, and I was often making it until early afternoon before the nausea hit me hard.  So I can’t say that it was the ativan that was keeping this in check during that time.

I’m still wondering if this is some kind of rebound/withdrawal from the Lyrica.  I know I wasn’t on it for long, but it had quite an impact on me and this started back up after I had taken it for three days then stopped it (after the week and a half to two week hiatus, it started a day or two after I stopped the lyrica).  If it is that, then I have reason to hope that it will perhaps go away again soon.  I really hope so.

Today, I’m trying to decide if I should go out with my husband to a get together at a co-worker’s (husband’s co-worker) house.  It’s supposed to be bloody hot and we don’t know these people well enough to know how well they host…i.e. can they accommodate someone who needs to stay cool or who will get sick and possibly pass out?  But I prefer the idea of doing something today to another day of sitting inside trying to find ways to keep busy and keep focused on something other than my rotten health.  So I may try it.  We’ll see.  I still have a few hours to decide.

Oh, and my GI doctor, who I paged yesterday like she asked me to…she didn’t call back.  Again.

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by dyspatient on August 1, 2015  •  Permalink
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Posted by dyspatient on August 1, 2015

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getting bad again

I woke up with racing stressy thoughts again today.  This is getting bad again.  I hadn’t taken an ativan since the 0.5 mg I took yesterday morning, and managed to get through the day ok, not great.  Had some bad spots, but ok.  Today, it’s only 7 and I’ve already had to take one.  I had the muscle spasms in my neck, shoulders, and arms that heralds my anxiety, then the retching started.

I’m so disappointed that this is back.  I had really thought I turned the corner on it.

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by dyspatient on July 31, 2015  •  Permalink
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Posted by dyspatient on July 31, 2015

https://badturns.wordpress.com/2015/07/31/getting-bad-again/

rebound or relapse?

The anxiety is officially back.  It’s not terrible yet, but it’s there and it sucks.  I struggled yesterday to avoid taking any Ativan…I had been off it for a while, and had not had anxiety.  But the possible gastritis two weeks ago brought nausea, so I took it again at about 0.5 mg once or twice a day for a few days.  Then I started the Lyrica, and I stopped it again for a few days.  Then the lyrica brought nausea, so I started back on it at 0.5 mg once or twice a day.  The anxiety started a day or two after I stopped the lyrica, and I’m wondering if this is some kind of rebound from the lyrica.

Or if it’s just a relapse.  Or if it’s a dose tolerance/interdose withdrawal/rebound anxiety from the ativan.  I didn’t think I had been taking it too much, and I had gone a whole week without it prior to the gastritis…then went 4 or 5 days without it, then started again when I discontinued the lyrica and had the nausea (Saturday).  But I’ve kept it to 0.5 mg since then, and never more than twice a day.

This is very frustrating.  I don’t want to end up addicted to ativan, I’ve read that you can end up with pretty bad rebound anxiety from that, and the “rebound” includes when your body builds up a tolerance to it and your blood level dips between doses.

If this is rebound from the lyrica, then I should be able to either stick it out, maybe take the ativan very sparingly and judiciously over the next few days and it will lessen and pass, I hope.  If it’s some kind of rebound or dose tolerance from the ativan, then I’m just kind of screwed because I do need the ativan for nausea right now, so I can’t totally stop taking it right now.  And if it’s a relapse, I’m screwed because it means that I’ll be stuck taking escalating doses of ativan to help control it since I can’t tolerate the other meds we’ve tried for it.

In the meantime, I am trying to get in to see the potential new GI doctor.  I’ll be calling today to see if they had any cancellations.  Wish me luck.

Update:  no cancellations.  Trying not to be too bummed out about that.  I’ll try again tomorrow.  It’s all I can do.

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by dyspatient on July 30, 2015  •  Permalink
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Posted by dyspatient on July 30, 2015

https://badturns.wordpress.com/2015/07/30/rebound-or-relapse/

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.

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by dyspatient on July 29, 2015  •  Permalink
Posted in acutely ill, B.A.T.H., D.D.D., talking to doctor people, talking to insurance people
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Posted by dyspatient on July 29, 2015

https://badturns.wordpress.com/2015/07/29/from-bad-to-worse/

Hopless

I’m feeling a little hopeless. I called a GI doctor I am thinking of switching to yesterday, I had called a few weeks ago and made an appointment, the first I could get when I was sure I could get a ride….in October.  Yesterday, I called to see if I could get in sooner (I’ll pay for the taxi at this point) and the soonest they could get me in is late September.

I’m feeling trapped with my current GI doctor, someone I increasingly distrust to take care of me and manage my symptoms.  For the first time in a few weeks, I’m having a return of that feeling of dread and hopelessness…

I don’t like it at all.

I’m trying to remind myself that there is a cause for this feeling right now, unlike how it was in June.  Right now, I’m down because of the doctor situation, and because I continue to lose weight, feel awful, and I have a muzzy-headed GI doctor calling the shots (questionable shots here too) at a critical time…a time which is dragging on and on.  I need to find some way to come to grips with this so it doesn’t consume me.  It’s hard.

Oh and did I mention my therapist is on vacation this week (again!?)?  Yeah.  Of course.

I’m hoping to get out today, even just for a short visit with a friend.  I think sitting around the house is not good.  It’s tough though, because most days I do feel very bad, and getting out when you feel bad is hard.  But I’m going to try.  I need to take care of my mental health as well as my physical.

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by dyspatient on July 28, 2015  •  Permalink
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Posted by dyspatient on July 28, 2015

https://badturns.wordpress.com/2015/07/28/hopless/

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.

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by dyspatient on July 27, 2015  •  Permalink
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Posted by dyspatient on July 27, 2015

https://badturns.wordpress.com/2015/07/27/bad-day-for-eating/

Stopping Lyrica

Last night, I did not take the Lyrica.  I had been planning on doing that anyhow, but my GI doctor finally called me back late yesterday afternoon.  We discussed it.  I think the most convincing thing for her was the constipation the lyrica was causing.  Yeah, never mind the headaches, and daytime fatigue, nausea, and pre-syncope.

So I’m off that.  She asked me if I was adhering to a gastroparesis friendly diet.  Um, I had been.  Now I’m on a (low fat, low residue) liquid only diet, and I can barely tolerate that.  I sometimes wonder if she has a bit of early onset dementia, or maybe if she’s an alcoholic.  Or just can’t be bothered to chart, so that when she calls me back and has my record open in front of her (she always mentions it so I know she does), she could see things like what I said to her the last time we talked.

I re-explained that pain is not my most limiting GP symptom.  I explained that nausea is one but that the nausea comes only if I push past the other earlier (severe, limiting) symptoms of early satiety, bloating, reflux/regurgitation, and wicked heartburn.  She latched onto the heartburn.  “Have we done a Ph study on you?”

Uh, no.  No you haven’t.  And you haven’t done an endoscopy in over two years despite my symptoms getting worse even on 40 mg of Reglan a day, and despite the fact that I have new (as of last Fall) difficulties swallowing, which I reported and which you ignored.

Honestly though, if I’m going to change GI doctors soon, and I really hope I am, I’m not sure having my current GI do these studies is the best plan.  I’d rather have them done by someone better.

I woke up with no nausea today, which I am attributing to having not taken the Lyrica last night.  My bp is still a little low, and I still don’t know if that’s the lyrica or something else.  It’s confounded by all the fucking meds I’ve been put on (and subsequently, rapidly discontinued) in the last few weeks to deal with the side effects of the Reglan and the worsening GP symptoms after stopping the Reglan.  There was a little window last week where it was better, sometime between the mirtazipine/iberogast/beta blocker clearing my system and day two of the Lyrica.  Now, it’s dropping back into the low 70s in the evening, and I do very much feel like shit when it gets that low.  I know, I have a low BP at baseline anyhow, but not that low.  Here’s how my BP works.

  • Feeling good or stressed:  95-115/55-70
  • Feeling fatigued or easily fatigued:  85-95/48-55
  • Feeling ill, dizzy/lightheaded:  78-85/45-48
  • Feeling presyncopal:  <78/<45

This morning’s BP (several hour, a half liter of water, and one cup of coffee after waking) is 77/55 (hr 67).  Blurg.  I’m hoping this is a lingering effect of the Lyrica.  Tried researching hypotension as a possible side effect and all I got was the vaguely worded side effect of “blood pressure changes”.

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by dyspatient on July 26, 2015  •  Permalink
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Posted by dyspatient on July 26, 2015

https://badturns.wordpress.com/2015/07/26/stopping-lyrica/

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