Not so sweet dreams

Had troubling dreams last night, or more likely this morning as the dream was still with me when I woke up and since it was so fragmented.  Although I believe while I was dreaming it, it felt cohesive.  More or less.  As much as a dream can.

I was in a hotel with my husband and sister and some other people.  One of the other people was an ex boyfriend from my early 20s, a very scary guy I am still thankful to have gotten away from unscathed (a friend calls these exes the “psycho exes” and swears everybody has at least one).  The ex boyfriend was more of a nuisance than a malevolence, but a nuisance I had to take seriously and guard against.  Another of the “people” was my illness.  It didn’t talk, or do much except exist in the room.  I don’t know what it looked like now, I do know if I had to assign a sex it would be female (being an extension of me or something that makes sense).  I also know it was alien and more creepy than the psycho ex boyfriend.

I told my husband about this.  “You should find it in another dream and beat the shit out of it,” he said.  I laughed but explained how in a dream many years ago (about 9 years to be more exact, not long before I got sick) I had a dream where I was in my room looking down at my body.  It was translucent and I could see this dark threadlike thing running through it.  Thinking “aha, that’s the problem!” (the “problem” being my temper & toxic reactions to certain kinds of badness & stress, a legacy of childhood abuse I’m fairly certain) and reaching in and grabbing it.  I pulled, thinking I could remove it.  It stretched and thinned but didn’t break or come free.  Moreover, it HURT in a deep and horrible way.  I realized this was a losing proposition, if the reason I wanted to get rid of it was the pain it caused (emotional), then pulling and yanking certainly wasn’t helping that goal.  So I decided I had to change it from the inside by a sort of personal alchemy – a transformation of whatever those elements were into something less difficult and menacing.

I reminded him of that dream (I’d told him about it before) and said “Baby, I learned my lesson.  I don’t try to do things like that to these dream parts of me anymore.  Maybe if I see it again in a dream, I’ll try to talk to it or reason with it.”

We decided that was a good option.  Although I suspect this dream “person” is in fact mute, or speaks in a language I can’t understand.

Prufrock goes to the doctor

One of my favorite poems is The Love Song of J. Alfred Prufrock by T.S. Eliot.

I have no aspirations to developing an interpretation that accords with what analysts of the literary sort have assigned.  I read it and it spoke very much to me about the sorts of day to day struggles I have with context where what I wish to communicate and how I wish to be perceived both seem to differ vastly from what is available to me.  “I should have been a pair of ragged claws, Scuttling across the floors of silent seas.” describes so well how I often feel when these moments fail me.

No context is more loaded with this disconnect than my various experiences with doctor/patient communication.  The history giving, the narrative that starts with the spoken or unspoken question of “So what brings you here today?”  I know that what I need to communicate is valid, is of great import (to me), and that how I answer (and how well I answer) will have a significant impact on whether I get what I need.  But I am not what is expected of a suitable patient.  I complain of feeling terrible and yet I don’t look terrible to these people.  Could I show them a picture of how I used to be, of how I should be now so they could see a “before and after” effect of this long grinding illness on me?  And beyond my physical impression, there is also the fact that I necessarily deviate from the script.  I haven’t the heart to catalog all the ways in which I do.  I suspect there are many I am unaware of and listing the ones I do know only makes me feel irritatingly self pitying.  I will say that like Prufrock, I also measure out my life in coffee spoons – I am a careful and deliberate person who fears to put too much down, to give too much away and that sort of person is often seen as fussy and dismissable.  And that sort of person often gets in his or her own way when he or she tries to engage exactly because she or he is trying so hard to both analyze and act at the same time.

When I read that Prufrock fears that his attempt to foray into a sphere of discourse from which he is necessarily barred or at least a priori judged as inadequate will not just be difficult and frustrating but will “disturb the universe, I feel a deep resonance with poor old Prufrock.  Indeed, “how should I begin?” and  “how should I presume?”

 

And indeed there will be time

To wonder, “Do I dare?” and, “Do I dare?”
Time to turn back and descend the stair,
With a bald spot in the middle of my hair—
[They will say: “How his hair is growing thin!”]
My morning coat, my collar mounting firmly to the chin,
My necktie rich and modest, but asserted by a simple pin—
[They will say: “But how his arms and legs are thin!”]
Do I dare
Disturb the universe?
In a minute there is time
For decisions and revisions which a minute will reverse.

For I have known them all already, known them all:—
Have known the evenings, mornings, afternoons,
I have measured out my life with coffee spoons;
I know the voices dying with a dying fall
Beneath the music from a farther room.
So how should I presume?

And I have known the eyes already, known them all—
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawling on a pin,
When I am pinned and wriggling on the wall,
Then how should I begin
To spit out all the butt-ends of my days and ways?
And how should I presume?

new boss and other not very newsworthy news

Yesterday was the first day of my new boss. I am utterly relieved the nightmarish person who had been my boss is now out. She’s still around, lurking like a bad smell, but she’s not MY problem anymore.

Truly, it was magnificent to walk away from her yesterday giggling to myself when she approached me about some triviality which had struck her fancy.  “Sure, that does need to be done,” I said.  “I had even been planning to do it.  Remember that thing I made and showed you and asked if I could have permission to print on our account?”  (The thing she said was nice but told me not to print and questioned if it really was the best use of my time)  “That’s what it was for.”  And then I walked off.  I really enjoyed that.

Especially since she had screwed up my sick time last week.  She approved the request, then failed to approve it in my timecard.  I only found out because payroll called to ask me what was going on with it.  “What’s going on is that she has been pulling passive aggressive stunts with my timecard for way too long now,” I told the payroll worker.  “But hey, she’s not my boss since today!  I have a new boss!”

I have no idea if the new boss will engage in similarly themed if not executed harassment.  I hope not.  I haven’t really gotten a handle on him.  One day is hardly enough for an assessment.  We’ll see how it goes.  And I’ll have an opportunity to test this soon since I have that standing IV appointment to schedule for this week in the next day or two.  Yes, I finally got it scheduled.  It took four calls, one to registration, one to the ambulatory care unit where they do the infusion, one to my doctor, and then one more to registration.  Sheesh.

The doctor’s office also gave me the report on my ultrasound.  “It confirmed three nodules and they said ‘follow up scan as indicated’.”  The nurse told me she had no idea what “as indicated” meant and said she’d look into it.  I asked “ok, so I’m not sure what we are doing going forward here.  Can you ask if he (my primary care) also wants to check any thyroid function tests?”

That was last Thursday.  I’ll call today if they haven’t called me.  Reason being I have a standing blood draw with the standing IV order and if the doc wants me to get poked for thyroid tests, I figure why not consolidate?

Oh and I am still in the market for a drink that DOESN’T strip the enamel off my teeth and aggravate the reflux/heartburn.  Did I mention that I think this is the link regarding why my BP took a nose dive?  Sounds a bit silly, no?  But my primary was asking things like “had you been taking a lot of NSAIDs then stopped?”  “no more or less than usual, why?”  Apparently some of them have sodium in them.

So here’s the drink thing:  I usually don’t drink enough water.  I am one of those people who could go nearly all day without drinking any.  I have to remind myself to drink.  Well, to drink anything other than gingerale and coffee.  But the gingerale is totally killing my teeth.  After a day or two of drinking gingerale at what used to be my normal levels, I found my teeth were super sensitive for days, sometimes weeks.  So I stopped.  It was hard.  I’d find myself craving a gingerale in the evening (my prime gingerale drinking time).  There had been an especially difficult gingerale “withdrawal” the week before the BP drop.  My teeth had been killing after a weekend of high gingerale consumption so I went back to the ultrafloride toothpaste my dentist prescribed (I really am wearing all the damned enamel off my teeth…that’s what 30 years of barely controlled acid reflux will do) and switched the gingerale for water.  “I need to drink more water anyhow,” I told myself.  And after a week, my BP was in the basement.   I’m still covered with bruises from the clumsies.

Now before you shake your head and say “Oh dyspatient, what’s gingerale got to do with your blood pressure?” remember that I am under orders to push salt.  The cardiologist wants it, the nephrologist who did the dehydration work up (which showed I lose too much salt in my urine) wants it, and my primary care laughed and said “good!” when I told him about my “orange chip” habit.  How much sodium was I getting per day from my gingerales?  50 mg per can, and on a moderate consumption day, I would usually drink about 4.  I could easily (and often did) drink more.  And then I just took it all away.  No more 200 to 400 mg of sodium, and as my husband pointed out “It might not be so much how much you were having but that you were essentially on a low dose sodium ‘drip’ all day.”  Hm….  Interesting thought.

I’m resolved not to go back to the gingerale.  I’ll still have one occasionally, like if I’m out for lunch or dinner.  But in the meantime, what to drink?  Gatorade is as bad if not worse on my teeth and throat.  Right now, I’m trying out various “electrolyte enhanced” waters.  Of course, guess which one they don’t include in their electrolyte mix?  Yep.  Sodium.  Because it’s bad for you, if you’re a 50 year old overweight man with hypertension.

more waiting

This time on the hospital to set up the outpatient IV fluid treatments and weekly blood draws.  And boy could I use the fluids.  BP today is back down, 86/56.  And I feel it.

I had my ultrasound yesterday and then neuro appointment.  Too much running around, not enough food or fluids.  I tried, but I guess I fail in the keeping myself hydrated front.  And the extra diarrhea yesterday AM doesn’t help.  No, not one bit.  (tmi?  guess what kids, it’s a health related blog and I have GI problems).  Ultrasound was quick, so quick that afterwards I went to talk to the registration people about the IV order my PCP’s office said they sent over.  When I had first come in to register for the ultrasound, I was greeted by efficient people who signed me in and then called me up to register me.  When I came back, that was not the case.  One woman was staffing the desk…a woman whom I dubbed “Bumbles McJudy“.  Bumbles was in a state because there were TWO (Horrors!) people at the desk patiently waiting for her attention.  I explained what I was looking for when she called on me.  Twice, no twice and a half actually because after prompting me to explain it a third time she cut in with a frantic “Ok ok ok, I, um, ok, just have an um, have a seat and I’ll be with you in a minute.”  20 minutes and a growing line of “have a seat” people later, I got up and said “I’ll just call later,” and left.  But then later was the neuro appointment and then it was too late so now I will call on Monday and I hope have time to set up an IV appointment for some time next week.

The neuro appointment went ok.  Nothing major.  He asked about whether I called my PCP about the blood pressure and did they see me right away.  I told him yes, I called and they saw me as soon as they could.  He was relieved “because that was alarming” in reference to the hypotension.  I told him I usually run a bit low but not this low and showed off my lovely forearm bruise from where I tripped on my own feet and fell into a door frame.  “That really bothers me.  What did he think it was?” the neuro asked (“he” being the PCP).  “Um…’severe orthostatic hypotension, spontaneous dehydration, intermittent diarrhea’.” I said recalling the wording on the IV order.  “But WHY?” he continued.  The answer I wanted to give was “fuck if I know” but I use radio-protocol in this guy’s office since he’s sort of religious and I figure he probably would react poorly to my day to day potty-mouthed speech.  “No clue.” I said.  We talked about the diarrhea and CFS and fibro for a bit.  Then on to the MRI.  “Had an ultrasound of the thyroid, PCP ordered it” I told him when he mentioned the nodules. “Good, it’s probably nothing, usually these things are, but I’m glad he ordered it.”  Then on to the spinal stuff.  Stenosis at the nerve root at C5/C6, plus my EMG from last year.  “It looks like a healed injury” he said and asked “Did you ever hurt your neck?”  Nope.  We went through a very thorough history of Dyspatient’s possible neck/upper body traumas.  Not much.  “Uh, my sister threw me off a bunk bed when we were little and I hit the floor flat on my back and it knocked the wind out of me…but that’s really all I can remember.  I tend to land on my knees when I fall.”  He made a joke about me landing like a cat, and asked how old I was for the bunk bed wrestling match….too young he said when I told him I was probably about 7 or 8.  “Any shocklike feelings when you turn your head or put your head to your chest?”  “Any pain when you strain, cough, bear down?”  No, not that I can remember when the neck pain is going (which it wasn’t yesterday)… “Yeah but you minimize” he told me.

Stop the presses.  A doctor actually said I MINIMIZE.  Not catastrophize.  Minimize.  I’m going to ask my therapist about this, see if she agrees.  I know how I feel inside but I’m interested in knowing what my reactions come across like.  I’ve gotten very conflicting messages, although in the last 8 years and in medical contexts, usually I am told or get the impression that I’m seen as OVER-reacting/making mountains out of molehills/NOT minimizing.

Neuro doc and I ended with him saying I should really get massage therapy, asking about my medication use since we last met, and telling me that he could do another EMG but that he doesn’t think it’s really necessary right now but that I should let him know if I have more weakness or tingling in the arms.  Ok.

I’m alright with this.  He made sure to tell me that if I needed to see him, I should call.  He also recommended a GI doctor who wasn’t a dumbfuck (I had related some of my experience with the last guy to him, and quite validatingly, he was clearly annoyed with the guy’s approach.  “Did you know that there was a recent study that found a very large number of doctors have Asperger’s?” he asked.  I laughed.)  I didn’t feel like the neuro was pushing me out or incorrectly declaring me all better, or closing the door on my following up with him if I needed to for the migraines or neck pain or arm symptoms (which I still think go more with the migraines than not).  Amazing how much difference the approach makes, doesn’t it?  I mean, the neuro pretty much said “Yeah, I don’t know what’s going on here” but because he didn’t then suggest I was nuts or faking and didn’t wipe his hands of me, I can handle it.  And I know that I can call him if I need him.

And Monday, I will start the next round of phone calls and proddings of doctors, nurses, registrations clerks and whatnot.  And in the meantime, apparently I will just keep drinking the pedialyte (yuck) and gatorade.

correction

Not blob.  Blobs, plural.  On my thyroid, right lobe.

So, ultrasound of the thyroid coming up.  No needles, not right yet at least I hope.

And IVs for the hypotension.  I’m happy for that.

There was some other stuff on the MRI too, stenosis something something…I’ll let the neurologist go over that with me on Friday.

Now if all this shit turns out to be thyroidy, does the neuro or the primary care get the credit?  Neuro ordered the MRI of my neck, so I’m thinking he might.  Although I know that was NOT what he was looking for when he ordered it.

waiting

So I went to work yesterday, which was hell.  Driving in was stupid, and I nearly turned around and drove back home several times.  Called the neurologist and asked if the fioricet was what was making me feel so cruddy, and dropping my blood pressure.  He says no, it shouldn’t do that, and made me promise to call my primary care “because that’s too low”.  I called my primary care, left a message on the nurse’s voicemail.  And waited.  And waited.  Finally called them back a little before 5:00.  Turns out the nurse had meant to call back but had forgotten.  Oops.  We went over a few things, what else is going on, she asked.  I described how I’m feeling.  “That’s all consistent with the low blood pressure” she said.  I added that there’s all the ‘usual stuff’ too, the overheating, the headaches and neck pain, the nausea, the joint pain.  That’s just sort of a given.

She tells me to drink gatorade and says she’ll leave a message for this morning, for first thing this morning in fact.

So I wait.

And wait.

I called just now and asked what was up.  Had to give the whole ‘what’s going on’ thing again.  They’ll get back to me.

And so I wait.

sick of sick

Having spent the better part of this past gorgeous weekend on the couch or shuffling from room to room without even the strength to turn a god damned doorknob or faucet effectively, I can say with utter certainty that I am 100% sick of being sick.

And the answer to yesterday’s multiple choice was D.  Because I hate going to the ER.

ow, oh, and ah

Update: Rather than improving with time, this seems to be worsening. BP is 89/43. So…do I
A) call neuro
B) call primary
C) go to e.r. since if I call & either actually calls back that is likely where I’ll end up (safe bet)
D) stay on the couch with cat and orange chips

Had a migraine again yesterday.  I took a fioricet.  I thought it was abating, so not to be undone by it (I had THINGS TO DO!) I went out, wearing dark sunglasses and a hat, with my sister to look for curtains.  And while out, the ice pick headaches and nausea started.  Recalling my neurologist’s advice, I decided to take another fioricet.  But realized I’d left them at home.

Got home and took another fioriciet.  Rested for a bit.  Went back out (to the drug store, to pick up the rest of my daily drugs).  While there, my sister and I sat in the blood pressure/arm squeezer machine.  Hers was a usual, for us, low blood pressure.  Mine?  It told me to fuck off.  It said it didn’t have sufficient information.  I jokingly said it should flash a little coffin when the BP is too low and announce in it’s computery voice “You have no blood pressure.  You are dead.”

Got home again and checked it on the one I have, which routinely runs a bit high.  90/45.  Woo.  Later, it had gone up to 91/47, which I consider negligibly up.  Took a whatchacallit, nausea pill because the nausea was in high gear at that point.  Laid on the couch and felt useless for the rest of the night.

And this AM, woke up with a headache and a blood pressure of 80/56.

So I’m wondering – does fioricet lower blood pressure?  It’s got a barbiturate it in so I suppose it probably does.  And I’m wondering if there is any god damned thing I can take for my migraines that isn’t going to fuck something else up.