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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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.

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.

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.

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.

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.

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.

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.

holding on, holding out

I’m increasingly thinking I need to be inpatient, and I don’t say that lightly.  I spent yesterday, day two of the massive hypotension, sucking down juice all day and trying to lay with my feet up to keep my resting BP up.  Nope.  The only things that reliably bring it up are stress/anxiety and being up and moving around, both are temporary and the up and moving also jacks up my heart rate to my high POTSy levels.  So that’s no good.  Plus, I’m dizzy while I’m up.

The two days of juice have taken their toll on my stomach I think.  Well, that’s what my theory is for why I woke up this AM with stomach pain which quickly progressed to nausea.  Took a zofran.  An hour later, I was vomiting.  I swear, all zofran does for me is constipate.

The juice, white grape juice, is less acidic than gatorade, but it still is sharp on my stomach.  I am hoping two days of high acid in my stomach is what it was that set things off today…I’m pretty unhappy that I’m puking now too, on top of all this blood pressure crap.

My husband leaves tomorrow for his conference, which he is already planning to cut short since I’m so sick.  A good friend (out of state) is coming up to hang out with me while he’s gone.  I’m not accustomed to having company while I’m so sick, basically she’s going to have to minimally baby sit me (and possibly take me to the ER and watch my cats until my husband gets home) and I am not looking forward to that.  I had been hoping this would be more of a visit, but the last few days are not looking good.

So my husband’s coming back Sunday night, cutting his conference attendance short, which sucks.  But I’m glad.  Because this sucks too, and it’s scary, and the only reason I’m not pushing the doctors to admit me is that I don’t want to be in the hospital while he’s out of town.

I was supposed to check in with Neuro today, about the mirtazipine.  I’m sure they’re going to be unhappy that I discontinued it, but I really feel I had good reason to do so.  Of course, today’s nausea and vomiting doesn’t help my  case that without mirtazipine, I can at least tolerate a liquid diet.  😦  But up until today, I was doing much better OFF the mirtazipine than on, stomach-wise.

crash

My blood pressure has crashed.  I had noticed that it was tanking in the evenings, down in the mid 70s a few times.  I mentioned it to the neurologists.  Not even a raised eyebrow.

Well, yesterday my systolic got down to 69.  And for the record, no I did not feel at all well.  But I didn’t go to the hospital or call my primary care (who would have just said “go to the hospital”) because I know how you get treated in the ER, i.e. like shit, if you’re a woman with a psych history.  And I now am.  And if I’m stressed and anxious, which I am just thinking of going to the ER, my blood pressure goes up.  So it’s a catch 22.  If I go for my super low blood pressure, I’m going to be so keyed up about going that my blood pressure will look low/normal (like, 101/55) and not crazy hypotensive (69/45).