Not My Best Week

First, the short form.  I posted the following in last Tuesday’s New Member Chat:

A good night’s sleep will set me right.  We’ve been through 8 hours in the ER (partner scratched the inside of her ear with her fingernail and panicked; didn’t want to wait to see GP), followed by a ride on the Dementia Express.

Partner says the ER nurse is an undercover cop who wanted to arrest her because the salt she carries with her looks like cocaine — and that the middle-of-the-night vehicle we saw by the side of the road on the way back was an ambulance (it was a tree trimmer vehicle) that was put there as an apology to us, since partner was not in fact in possession of cocaine.

Partner then regaled her ob-gyn (today’s appt) with her undercover cop story. Didn’t like my attempt to explain what was going on vis a vis her actual health (both today & last night) & was very snippy at me (“Maybe eventually you’ll be nice to me” was the last straw), to the point where my sleep deficit conspired w/her disorder in a way that drove me to tears, big time.

Fortunately, partner’s been doing enough emo work so that she said my tears & venting (in the privacy of the car) were good for her to hear, & she was supportive of me in that. So, very rocky for about 24 hrs, followed by a good truce/understanding.  PS: her ear feels fine now.

I’ll be able to laugh at this down the road; right now I’m exhausted.  This is on top of heavy “CT scan X-ray brain surgery AMA cover-up blah blah blah” talk from her over the weekend, so I really hit my wall this time.  Good news is, she likes seeing my emotions even if I’m sobbing/screaming. o_O

Here’s the long form:

On Saturday, June 22, my partner was in pain and panicking.  She said she felt pain in her left ear when she probed there and immediately wanted me to administer eardrops.

We have neomycin-polymyxin-HC Otic eardrops left over from her toenail ablation, but the directions for use on her toenails (off-label) were different from the standard directions for ears.  I resisted using them because the drops had been prescribed for infection, and no infection had as yet been diagnosed.

My partner insisted on the eardrops.  She yelled while I checked the medication on Drugs.com, looking at the directions and the potential risks.  She hadn’t seen a doctor about her ear and didn’t want to see anyone at that time.

I had to decide whether or not to give her the drops.  Finally I gave in, under duress, and prepared to face the consequences of medicating her outside a doctor’s supervision.  I gave her one dose of four drops.

She didn’t want a second dose, despite the instructions that said to continue use until a doctor says to discontinue the drops.  Stopping them early if an infection is present can lead to a worse infection.

Administering the drops was also problematic because my partner kept shifting position.  She thought she was making things easier for me by finding just the right light and the right body angle, but she didn’t listen to me when I told her to just lie still.

She said she felt better on Sunday 6/23.  She again didn’t want any eardrops.

She again talked about her “brain surgery” MS.  Our discussion lasted about an hour.

Transcript excerpt

Partner: Um, it bothers me that the doctors voted for MS and Parkinson’s for me and the likes of me.  Down the road I can see it as a, well, this way they won’t be driving a car and won’t kill people that way.

[My partner has not been diagnosed with Parkinson's, but she has a genetic predisposition for it.  She is now taking Ropinirole (Requip generic) for restless legs syndrome.  The med is used for both conditions.]

Ejourneys: What do you mean by voted for?

Partner: I did not choose to become [partner's name] the MS person.

Ejourneys: Could you elaborate on that?

Partner: It involves the high X-ray, high-force X-rays that I believe did the sculpting of the white matter of my brain….Um, if/when I or we write to [the 1982 hospitals] and ask for the radiology records and the X-ray potency, that will pretty much be the answer to did they take out cells out of my brain?  And I think in general they weren’t targeting neurons.  The description with what happened to the corpus callosum, which is almost all white matter anyway, is that what their technique ends up doing is making a tunnel in the white matter.  That means CSF fluid can go from where it’s high pressure to where it can, is allowed into veins or out the nose drip, whichever is the easiest.  And CSF pressure can go down and cerebral blood pressure can also go down and therefore not rupture.  The heart, which is getting messages to push things through high pressure areas will have its membranes less challenged and artery and vein membranes are both next kins to connective tissue.  So, um, I intend to find out if there is any knowledge — knowledge-based? — evidence-based methodologies for bolstering up my connective tissue.  Magnesium’s one of them.  I want to know about the others.  It seems that Q-10, is that what it’s called?

Ejourneys: Coenzyme.

Partner: Coenzyme Q-10 is another one.  When I brought up zinc, [her GP] was talking about calcium, magnesium, zinc pills.  That’s kind of a standard.  Um, so I just today have started taking the calcium magnesium zinc pills I have on hand.  And there are a lot of them, so I plan on not running out of them.  I know that CVS carries them.  Um, and, uh –

Ejourneys: What makes you think the CT scans taken of you were not just picture taking CT scans?

Partner: Because [her neurologist] said, “We thought you would die.”  I assume he’s speaking for the AMA in general there.

[I have not heard that statement from her neuro.]

Ejourneys: Well, I suggest we confirm that with him.

Partner: We can do that independently of asking [the 1982 hospitals].  We don’t need his permission to ask them.
….
Ejourneys: Are you telling me that you believe the doctors at [the 1982 hospital] deliberately gave you MS?

Partner: In a sense, yeah.  It’s not an easy conclusion to come to.  I fought it off for 30 years, 28, something like that.

Ejourneys: Well, that’s something I’d like to bring up to [the neuro] also.

Partner: Right.

Ejourneys: That perhaps he can give you information that gives you better information.

Partner: Well, reading Skinner’s autobiography gave me one piece of information.  That connective tissue can be so weak and made weak and weaker by calcium that it ruptures.   It says in that book that it ruptured in his brother’s brain and he died at age 16.  [Skinner had actually written, "His best guess was that my brother had died of a massive cerebral hemorrhage, possibly due to a congenital weakness in a blood vessel."  Skinner's brother had died after eating a sundae.]  Uh, it might have been easier to take those 28 years if I’d read that autobiography somewhere along the path, but I’d only read it recently, so I’ve only come — I was casting about for what the heck did these doctors think they were doing?  Sure the Civil War, you cut off a leg to save a soldier, but chopping up a brain to keep from what?  And at first there wasn’t any what.  Um –

Ejourneys: If you receive an answer that says no, these CT scans were not meant to give you MS, would you believe it?

Partner: Specifically, are you saying, if I get from [the 1982 hospital] –

Ejourneys: Or [the neuro] –

Partner: …. There was a CT scan, an angiogram, another CT scan at [1982 hospital #1].  On one of the sheets it says the next CT scan is planned for the 22nd.  I have not seen a radiology report from the 22nd.  The move to [1982 hospital #2] was supposed to happen on a Friday.  It got moved to a Monday.  Um, when there was the angiography, there was instructions about double contrast and I think that is when the X-rays were targeted toward the corpus callosum the way the arteries go. They’re one on each side of the corpus callosum, so angiography studying vessels, arteries and veins, that would be hard to describe what was happening when the contrast media was injected and the X-rays were targeted toward the area where the arteries were.  The arteries would be radiating, reflecting back by this contrast media, the energy and would be forming a scar casing around the brain arteries.  That scar casing would push back against the arteries, which would do two things.  Um, when thought processes call for more activity, an untreated person would mean pumping scads more blood flow.  Expanded arteries.  Um, in this aspect of MS, with the casing around the artery, it means blood flow can increase a little, but no more.  On the other hand, it can’t balloon out enough to rupture.  The phrase “Dawson’s fingers” I’ve looked up in various reference sources on the web, and they are by definition peri-arterial.  They’re around the artery.  I have not seen it in print that they are caused by or created by X-rays targeted at contrast media in arteries, but having found that each contrast media, CT scans and MRIs, is — has as a characteristic fluorescence, and that says if energy of a high enough quotient is targeted at this material it will re-emit that energy.  Not as much; some of it will be absorbed by warming the material.  But it won’t be emitted very far.  It would be like a fluorescence tube.  And if there is enough energy to singe or scar in the fluorescence, then the scarring will happen right around where the fluorescence happened, where the X-ray was targeting.  And that’s how I think Dawson’s fingers got created around arteries.  And the other aspect I looked up has to do with Marfan and Marfanoid.  Marfan is variable.  Um, there are mortality statistics available on Marfan people.  They tend to die between 45 and — 35 and 45.  Um, and, uh, I tried looking up mortality statistics on Marfanoid.  I never got a readout.  So Marfanoid may be people who aren’t tall, but have the other connective tissue characteristics and the tall people that have that kind of connective tissue, it might be that they don’t die at 35 and 45 because they have been treated with this many scar-creating, well, rigamarole comes to mind, procedure, set of procedures.

Ejourneys: If [the neuro] or another doctor told you that the CT scans were not done to deliberately give you MS or scar tissue, would you believe them?

Partner: I might believe it for the last CT scan or one of the later ones where they were checking to see what they’ve done.  To see if anything shifted or anything.

Ejourneys: So –

Partner: The earlier ones, no.

Ejourneys: So you believe that the doctors at [the 1982 hospital] were deliberately giving you MS?

Partner: Well, I sure know my pulse rate went up and stayed up about five or six days after one of those X-ray sessions.  That means a lot of damage to be cleaned up.  A lot of blood to send out to do the cleaning up.

Ejourneys: And you don’t believe that this damage was happening independent of the CT scans?

Partner: I never had a pulse rate like that.

Ejourneys: You don’t believe in a sudden onset of disease outside the treatment that you are receiving, where doctors are trying to figure out what’s going on and why you were exhibiting aphasia and everything else?

Partner: Nope.  I think this is where MS stands for mirrors and smoke.  That’s what it means to me.  They may admit it.  It might be words they use among themselves.  They would never say that to the public.  Some of the communications from doctors are to soothe the relatives and the community, not to give information to, uh, to a patient who is in a community that at the time– well, that was before the Disability Act.  That was before a lot of, okay, disabled people exist and need some give and take.  It was in years where it was dog eat dog.  It was America.  And, uh, for doctors to make somebody less able to survive in a dog eat dog, it makes some sense for them to cover it up, the fact that this person is walking out less able than they were.  And nowadays it’s easy to find the information that typical jobs last four years.  Um, which makes it easier to — this is not necessarily an exact connection, um, that 30-year careers are a dang rarity, unless I’m just way misinformed.  Um, so I bring up the topic of the asking for the radiology reports now, rather than just going ahead and doing it.

[Excerpt end]

On Monday 6/24 she wanted to see a doctor, but not her GP.  She wanted to see the ear, nose, and throat doctor who had treated her for allergies years ago.  (He’s married to her GP, whose office is next to his.)  My partner called his office and was told he was in surgery.  He did not call back before day’s end.

Around 7 p.m. my partner was panicking again.  She insisted I take her to the ER.

She had scratched the inside of her ear with her fingernail at least twice before.  I suspected that was the case this time as well, but with MS it’s hard to tell what’s really going on.  She didn’t want to wait to see her GP or the ear, nose, and throat specialist.

We headed to the ER, eardrops and her list of meds in hand.  In the moment’s excitement, I had forgotten to gather up her other meds.  I’d be back for them later — after midnight.

We were in the ER for about 8 hours, for something I believed was very minor and that could have been done through our regular doctor, had my partner not been in such a panic.  The long wait was due in part to the arrival of two ambulances and police being called to subdue an unruly patient.

The hospital is about 15 miles from home.  I drove back to get my partner’s other medications, since she had to take them.  There was almost no one else on the road, but I did spot a service vehicle to the side of the road, with a cherry picker attached to it.  I believe the workers there were trimming trees, something that’s standard procedure at the start of the hurricane season here.

The calm drive in solitude on a near-empty road was one of my Three Positives for that day.  Another positive was that the long ER wait enabled me to finish reading my book.  The third was cloudscapes seen during the initial drive to the hospital.

My partner doesn’t leave her meds in their original bottles.  She parcels them out and puts smaller pills inside gelatin capsules so that she doesn’t lose them and can find them easily if they fall.  To take the pills, she removes them from the gelatin capsules, which she then saves for new pills.  She saves old medicine bottles, whose labels she crosses out, to hold what she’s encapsulated.  I gathered everything up and returned to the hospital.

Finally, she was seen by Dr. C.

Transcript excerpt

Dr. C: What can I do for you?

Partner: An earache on probing.  Before that, I was prescribed Synthroid.  I was saying that my breathing rate was slow…. Synthroid speeds up all bodily processes.  Fingernails, I have had a routine of clipping them before a shower.  Um, I just, with the Synthroid in, the fingernails were growing faster between the clipping and the shower.  This was some days before any, a couple days before any tenderness was found.

Dr. C: Before any what?

Partner: Tenderness.

Dr. C: Tenderness of what?

Partner: Of my ear.

Dr. C: Okay.

Partner: On probing with — with the finger.

Ejourneys: The ear pain is the main reason for our coming here.

Dr. C: Right.  So I’m not sure what you mean when you’re talking about the thyroid and Synthroid.

Ejourneys: [Partner's name], if I can summarize –

Partner: [cutting me off] I said fingernails, all bodily processes including fingernail growth.  The fingernails when unclipped, they looked more raggedy and, uh, more prone to scraping, so –

Dr. C: Okay.

Partner: I was just getting used to ways my nails were growing and the ear was an innocent bystander.

Dr. C: Okay.  I don’t think the thyroid has anything to do with your ear problem.

Partner: It didn’t make my ear hurt, no.

Dr. C: Okay.

Partner: But it made my fingernails grow faster and, um, and be more snaggy.  I noticed them.

Dr. C: Okay.  Well besides the thyroid problem, any other medical problems?  Blood pressure, diabetes, liver, kidney, cholesterol, anything like that?

Ejourneys: Uh, the other stuff is being treated –

Partner: [cuts me off] Let me say –

Ejourneys: Okay.

Partner: I have had restless leg.  I’ve been taking Requip for that.  I just recently started that.  Um, I have also just today noticed that if my feet get enough time to accumulate skin cells, that can have something to do with the restless legs.  I wash my feet separately and was lying down.  I was noticing that the restlessness was not there.

Dr. C: Okay, do you have any other medical problems that you take medicine for, or not?

Partner: Uh, the — the magnesium and salt I take for –

Ejourneys: [hands Dr. C the medications list] This is what she’s been taking.

Partner: MS.

Ejourneys: She’s not on any MS medications at this point.

Partner: I did research on mitral valve and –

Dr. C: Did somebody diagnose you with multiple sclerosis?

Ejourneys: Yes.

Partner: Basically yes.  Um, they were very definite about the mitral valve –

Ejourneys: I’d like to expand on that a little bit –

Partner: [cuts me off] Um, the [1982 hospital] report, uh, was in ’82.  The connotations of MS were scary to me.  I didn’t think I would get employed anywhere if an employer knew about it.  So they wrote it up with probable MS, but it could also be this or that.

Ejourneys: No, it was probable viral encephalitis.

Partner: Well –

Ejourneys: The hospital records show that MS had been considered and effectively ruled out. However –

Partner: All through the [1982 hospital] report they said it could have been MS or Creutzfeldt–Jakob or this or that.

Dr. C: Okay.

Ejourneys: [Partner] received the definitive diagnosis of MS in December 2011.

[At this point, Dr. C asks the same questions that had already been asked at intake.]

Dr. C: Okay.  Have you ever had surgery of any kind before?

Partner: Um –

Ejourneys: Hysterectomy in February 2009.

Dr. C: Anything else?

Partner: There’s been patching up of accidents and when I was five my leg had to be, um, it had to get 20 stitches because I had scraped my leg on a saw.

Dr. C: Okay.  Are you allergic to any medication?

Partner: Not allergic like that.  Um, there are some side effects that I’ve registered, but it’s not called allergy.

Dr. C: Okay.  You don’t smoke?

Partner: No.  I have in the past, but that was decades ago.

Dr. C: Any pregnancies in the past?

Partner: No.

Ejourneys: In case it’s relevant, other surgery –

Partner: I’ve had my ovaries removed –

Ejourneys: — was –

Partner: And Fallopian tubes and womb.  And it took three hours on account of endometriosis, polyps, cysts.

Ejourneys: Um, [partner] had a couple of outpatient surgeries each time to — it was an ablation of the large toenail.

Dr. C: Okay.

Partner: One of those toenails had been infected since I think sixth grade when I, in running, ran into an upright lawn sprinkler.

Dr. C: Okay.

Partner: And the other one probably only infected about 20 years.  But I just have been, uh, trying to — my mother took care of a thumbnail infection probably from sucking my thumb.  She was –

Dr. C: Okay.  Is there any family history of heart disease or stroke or diabetes?  Cancer, blood pressure –

Partner: Cancer, yes.  My father just died of pancreatic or that area, um, cancer.

Dr. C: Okay.

Ejourneys: He also had diabetes.

Partner: Mild.

Ejourneys: Mild and late onset, but he had diabetes.

Dr. C: Okay, let’s take a look at your ears.

Partner: Oh, yes, and his father died of colon cancer.  That’s the one that’s not infected.

Dr. C: Turn towards me.

Partner: That’s the one that — aaah! — aches on probing.  Why don’t I sit facing you for doing that?  It would make it easier for you, I think.

Dr. C: Open up your mouth for me.  Have you tried to put anything in the ear?  Have you cleaned it out with anything?

Partner: Uh, yes, a Q-tip.

Dr. C: When was that?

Partner: Um, with soap and water a couple of days ago.

Dr. C: Okay.  How long has the ear been bothering you?

Partner: Uh, three or four.

Dr. C: Because it looks like you probably abraded or scraped it with something.

Partner: Yes, my fingernail.

Dr. C: So, you ever hear the only thing — there’s an old saying, the only thing you’re supposed to put in your ear is your elbow?  Try it once.

Partner: Ears get very itchy very quickly.

Dr. C: Mm hm.  What you’ve done is you probably put something in there and abraded it or scraped it, okay?

Partner: Yes.

Dr. C: It’s not infected.  It’s just abraded, all right?  So I’m going to put you on some antibiotic eardrops that have a little bit of steroid, a little bit of cortisone in there, that will help calm down the inflammation and help it feel better, all right?

Ejourneys: Is it the same drops we have here?  These were actually prescribed for –

Partner: The toenail.

Ejourneys: A staph infection in the toenail.  But is this the sort of thing that [partner] can use.

Dr. C: Well, I don’t think you want to put that in the ear.

Ejourneys: All right.

Partner: They are used as ear drops.  The foot doctor was using them off-label.

Dr. C: Okay.

[several voices at once]

Dr. C: Yep, you can use this.

Ejourneys: So we’re talking about four drops in the ear about four times a day?

Dr. C: Three or four drops about four times a day, yeah.

Ejourneys: For how long?

Dr. C: Till it feels a little bit better.  Then she’s to have a look at it again by your doctor in the next two days.  But the eardrum looks good.  You just, there’s an abrasion on the canal, okay?  So I would be very careful about what you’re cleaning your ear out with.  All right?

Ejourneys: Now when you say she should be seen by a doctor in the next few days, is that her GP or would that be an eye, nose, and throat?

Dr. C: Her regular doctor can check, make sure she’s doing okay.

[Excerpt end]

After Dr. C left, my partner quizzed me on the eardrops, which led to much repetition and pulling out of the directions I’d gotten from Drugs.com.  My partner also needed a refresher on how she had been medicated following her toenail ablations.  She also didn’t like my qualifying her statements to Dr. C and was proud of herself for telling me to “back off, lady.”

Eventually the ER nurse entered and checked us out.  We had a pleasant conversation.  The nurse had moved to Florida six months ago from the Northeast and has a 30-mile one-way commute to the hospital from the county north of ours.  I provide those details in light of my partner’s latest delusion: that the ER nurse is really an undercover cop from this county’s Sheriff’s office, who thought the salt my partner carries with her in an old film canister was really cocaine.  And that the police who had been called to restrain the unruly patient had really been coming for her.

The service vehicle with the cherry picker was still off to the side of the road as we headed home.  My partner insisted that it was an ambulance, facing in the wrong direction (toward us), and that this was the hospital’s way of apologizing to her for the cop’s mistaken assumption that she had been carrying cocaine.

When I pointed out the cherry picker, she said that they can put those things on top of an ambulance.

We got home at around 4 AM on Tuesday, June 25 — about 11 hours before our appointment to see my partner’s ob-gyn, so that her hormone replacement prescription could be renewed.

Prior to that appointment, my partner was telling me about the undercover nurse cop.

Transcript excerpt

Partner: So that when you talk to find out that the police state is here, you’ll see it’s here in a lot of places.

Ejourneys: So, for the record, tell me again about your suspicion about the salt.

[At this point, my voice was sounding rather strained.]

Partner: The powder that I have in my pack that anybody can see as I move the magnesium in and out is salt.  It is not visible from a distance to see that it is salt and not cocaine.  Those — the police and the two ambulances and the unruly patient they talked about, they expected to be me.  They had the ambulances ready to take away you, too, if you got upset.  Uh, we might be able to clear this up by calling the Sheriff and ask if [the ER nurse] is one of theirs.

Ejourneys: [Laughs] Okay, so let me see if I understand you.  You want to ask the Sheriff’s office if [the ER nurse] who is working the overnight shift and is your primary nurse, is one of their moles.  Is that correct?

Partner: Pretty much.  Who said it was one of their nurses?  I don’t recall seeing her before.  She could have just been trained a little bit for rooting for that job and ready to pluck me out and go back to her Sheriff job. … I don’t like the idea, but, uh, if that news report is true and I don’t see a reason — I’m not happy at all to believe it — but for it to be an action, they would do it most conveniently after usual working hours, after shift change.  She, this [ER nurse], crestfallen is one of the words or something.  That she, her — um, and I think that some of the harshness of “use your elbow” was a leaking out of, “I had this all set up and I was going to make a nab, a sting, and this white stuff you told me about is salt.  There’s magnesium pills.”  And he might have been less caustic toward me if he wasn’t seething at somebody who said, “I have the perfect sting.”  And I think the fact that [the ear/nose/throat doctor's] office said they couldn’t get the phone to ring at our number — I called them, by the way, and said that the ear thing had been taken care of.

Ejourneys: I called them, too …. I didn’t see your note in front of the microwave.  I saw the light blinking on the answering machine, played it back.  It was [the ear/nose/throat] office.  I called them.  They said they’d already spoken with you this morning.

[The call had been to see if my partner could come in that morning to have her ear checked.]

Partner: Yeah, that was a garbage blinky before I spoke.  And so when I was just now saying it was nothing, it was my truth of what I had confronted the telephone, that there had been a blinky.

Ejourneys: Okay.

Partner: So any time, uh, this really emotionally charged thing, we talk about something, let’s try to find out very, very specifically what the other person means by that.  Because, um, which blinky?  Turns a whole table.  A garbage blinky that I saw was not — I’m not saying that [the ear/nose/throat doctor] was a nothing call.  So it — I don’t want to, um, well — I don’t want to end up slashing at you.  If we do initially because we don’t understand, I hope we talk it out and come to understanding.  Slashing out because you thought I was calling [the ear/nose/throat doctor] nothing would have been very understandable.  I would have hoped that sort of thing, we would — just talking –

Ejourneys: I did not think you were calling [the ear/nose/throat doctor] nothing at all.

Partner: Okay.  So even that little bit, we’ve talked it out.  Let’s fast-forward to doing stuff like that till after the — the boob type appointment.  And that’s the sort of thing I hope we can — we could, we could — let’s do something like, uh, let’s admit to [the GP] or, I mean, um, [the ob-gyn] or whoever stands in for the medical authority, we’ve both had a very complicated and emotional shock set this day and previous day.  We’re here at this appointment.  We’re trying to function.  Um, and if we need to, we’ll come again, if we think there’s things we haven’t grasped from the medical talk of boob check and whatnot.

Ejourneys: It’s not boob check.

Partner: I’m just putting that in for a stand-in, so we can get a move on.

[Excerpt end]

Neither of us had gotten much sleep, and my frustration was well on its way to reaching its boiling point.  Trying to convey the situation to doctors was an uphill battle, especially given my partner’s rambling and her interpretations of, well, everything.

Those interpretations were still going strong at the ob-gyn, complicated by the fact that my partner needed to update her paperwork and at first insisted that she could do it without my help.

Transcript excerpt

Nurse: [referring to the papers] There’s nothing on them yet.

Partner: Yep.  There’s nothing on some other things, too, but that’s part of it.

Nurse: Yeah.  Now, you go ahead and keep that till it’s all done.

Partner: Okay.  So you’re just checking to make sure I got the right forms to stick around.

Nurse: No, I need the information on there, so I’ll just ask you.

Partner: Oh, okay.  That’s fine.

Nurse: Okay.  So we’re going to slip off our shoes.

Partner: That’s fine.  I’m changing focus.  I might as well start by talking to you.  The last two, three days have been highly emotional and embarrassing. There were police involved.  And I’m not in jail….

Ejourneys: There were no police involved.

Partner: Say again?

Ejourneys: There were no police involved.

Nurse: Come over here and let’s get your height.

Partner: Yes.  Let’s –

Nurse: Turn right around and we’ll do your height.

Partner: There were no arrests involved, and that’s why I think the police were embarrassed.

[At this point I'm shaking my head and mouthing at the nurse, "There were no police involved."]

Nurse: Okay.  You can go ahead and step forward onto the scale for me.  I have you at 5’3 and a quarter of an inch.

Partner: Wow, that’s — I hope that changes when I get enough sleep the next time.  I only had a couple, three hours.  There was a time recently when I was 5’4″.  Hope it gets back up there.

Nurse: Okay, come down.

Partner: And I think when we call the Sheriff’s office, we can figure out whose guess is right as to whether or not there were police involved.

Nurse: Sure.

Partner: This is not something for your job, so I’ll leave it at that.

[The nurse questions my partner about items she hasn't filled out on the form.  I then try to elicit answers until her ob-gyn enters.]

Dr. A: Hi.  How are you?

Partner: Hanging in there.

Dr. A: Okay.  So, what’s been going on?

Partner: You don’t want to know.

Dr. A: Okay.  Any problems?

Partner: Not medically.

Dr. A: Okay.

Partner: But there may have been a misunderstanding of the white pills and the white powder I carry everywhere in my pack.  It is not cocaine.  It is salt.  It is magnesium pills.  And if they were trying to reach a sergeant on account of my pills, it’s not –

Dr. A: Okay.  Well, we don’t have anything to do with that.  We’re not going to mess with the backpack at all.

Partner: This happened last night and I’m still agitated.  I got three hours of sleep and two hours the night before.

Ejourneys: I’m not sure if you have this in your records.  Uh, [partner's name] was diagnosed at the end of 2011 with multiple sclerosis –

Dr. A: No, I don’t have that.

Ejourneys: — that acts like traumatic brain injury.

Partner: I believe the MS started in 1982, when I –

Dr. A:  Okay.  But the diagnosis was just made, though.

Ejourneys: That’s correct.

Partner: There’s a diagnosis and a diagnosis.  There’s what I walked out with records on from [the 1982 hospital].

Dr. A: Okay.

Partner: Hoping to get a job.  And so they were saying well, maybe it’s this, maybe it’s that, maybe it’s the other thing.

Dr. A: Okay.

Partner: And I’m saying to the prospective employer, well here I am.  I’m talking, so it couldn’t have been that much.  And so I lived on exercise.  When the Web came around I started doing magnesium and salt.

Ejourneys: [Partner's] records from 1982 show that MS had been considered but the final diagnosis was probable viral encephalitis.

Dr. A: Okay.

Partner: Well, that was kind of for the employers.  I — at the time MS was, you die young, you’ve got a down and out life and all this, that I couldn’t face.

Dr. A: Yeah.

Partner: All right.  So the — on the hospital report which I asked [the 1982 hospital] for, probably in 1983 or 4, they definitively said for my heart that I had mitral valve.  And when the Web came up a year or two later, I looked around and found from Wayne State that MVP people have salt and magnesium deficiencies.

Dr. A: But your family doctor can check you for that, though.  You can actually get blood tests for those and that’s easy to figure that out.

Partner: Yeah.  Well, at age 15 I totally blacked out.  I had been lying on the floor and then got up suddenly and got up suddenly again, because I collapsed.

Dr. A: Okay.

Partner: I didn’t know to ask the family doctor at the time, so I hobbled along with, okay I can turn it into a brownout and stand back up.  And that’s what I did for ten years.  And so I didn’t ask anybody, any family doctor.

Dr. A: But now, if you need to do that, that’s easy to do –

Partner: If I’d done that with a family doctor 40 years ago, would they have told me yes, lady, you have MS, you have this connective tissue thing –

Dr. A: Forty years ago, we really couldn’t diagnose it very well.  It was tough.

Partner: Well, then, I guess what my neurologist says to me now is that it was inevitable that I would end up with this brain surgery.

[I did not hear the neuro say that.]

Dr. A: Okay.

Partner: And I wish there would have been a way not, because I wish I would have been able to speak quickly when a question — when a novel question is answered.  But I can’t.

Ejourneys: Um, [partner's name], brain surgery is a term of contention, because we have different viewpoints on that.

Partner: I believe that — I have come to believe in the last couple, three years –

Dr. A: That you had some neurosurgery?

Partner: Yes.  I couldn’t have gotten Dawson’s fingers without that.

Ejourneys: She believes the CT scans caused her MS.

Dr. A: Okay.  That probably isn’t the case.  But let me just get back here now.

[He questions her about what estrogen she's taking and has taken.]

Dr. A: Okay.  [Dr. E] had given you Enjuvia.  Are you still taking that?

Partner: Yes, I am.

Ejourneys: And we need a new prescription for it.

Dr. A: I can do that, okay?  And how about a mammogram?  When was your last mammogram?

Partner: Uh, by whom?

Ejourneys: I believe that [partner] is due for a mammogram and another bone density test.

Partner: I think maybe not with the bone density.

Ejourneys: [The GP] says you need a new bone density test.

Partner: I want to see that in writing.

[My partner was correct here; I had misremembered and need to follow up.  Reviewing the recording from the GP visit shows that the GP had thought my partner had a bone density test last year, but my records show she had one back in 2009.  Record of that test had reached the GP only last year.  According to the NIH, bone density tests are performed every 2 to 3 years, but a new study suggests that women with good scan results can wait for 15 years before rescreening.  My partner's results had been good.]

Dr. A: Okay.  Well, we can do a bone density test.

Partner: Yeah, but I don’t want to have any more radiation in my body than I can help.  Is there a non-radiation form of bone density?

Dr. A: No, there isn’t.

Ejourneys: Perhaps we can get the referral for a bone density and then go back and check.

Dr. A: Okay, well we can — we do them here, so if we’re going to do it I would prefer to do it.

Partner: I think you’re — what, um, what level of radiation is –

Dr. A: We actually have the newest machine in the county.

Partner: I’m happy to hear that, but I don’t even know how many grains went into my body in 2000-and — in 1982.

Dr. A: Um, the radiation for bone density is so low it doesn’t even require any shielding.

Partner: That’s an indication.  That relieves me some.

Dr. A: You can put it in a parking lot.  You don’t have to have it –

Partner: Yeah, it’s endangering the public.

Dr. A: Yeah.

[Dr. A performs pap test; more questions about medical history.]

Nurse: If nothing has changed, just put “see previous history” and have her sign for me.  The most important things are the medicines.  Just in the areas where nothing has changed, put “see previous history.”

[Partner and I continued our conversation after Dr. A and the nurse had left the room.]

Partner: Um, when there’s things to focus on, let’s save the “my beliefs, your beliefs” contention for later.

Ejourneys: Not when I think that you are giving information to medical professionals that is inaccurate.

Partner: Then please let me say my say, in case interruptions make me not have access to my line of thought.

Ejourneys: Okay.

Partner: And saying things like that gives me more insight into what you were saying about when you are interrupted and collecting every bit of your thoughts.  So I hope we cut each other slack about that going forward.

Ejourneys: Okay.

Partner: So I see a signature.  Do you think that’s it for this?

Ejourneys: Yeah.  Most of it I said, “See previous.”  If you want to look it over, feel free.

[We continue to work on the forms until Dr. A enters.]

Dr. A: Okay, here’s the Enjuvia, okay.  And we’re going to do a mammogram and a deca scan.  My schedule is up front.  If there’s any problem with the pap I just did, I’ll call you.  If it’s normal, you’ll get a note in the mail, something one way or the other.

Ejourneys: Okay.

Dr. A: Any other questions about anything?

[Excerpt end]

Our discussion continued about the forms.  I asked Dr. A about the anesthesia used during my partner’s hysterectomy and learned it was probably propophol, which would also likely be used during her upcoming colonoscopy.  Given her brain damage, I want to convey that information to the neuro.  Partner has been worried about anesthesia ever since she read that Peter Falk had suffered brain damage from too much laughing gas.  We spent more time in the waiting room finishing up the forms.

On the way home she wanted to stop and look at the outside of the ICCD Clubhouse to which she’d been referred two years ago.  She now says with regularity that she’s getting closer to being able to step inside because she wants them to get her a job.

There’s no real parking in the area and we didn’t have the address with us.  We couldn’t slow down sufficiently due to traffic so I waited in the car, parked in a driveway, while she looked for the place on foot.  After a few minutes I drove down the road and met her; she was ready to return to the car.  We finally found the sign.  It was after closing time, so she was ready to continue toward home.

My partner was still sore at me for clarifying (and at times disagreeing with) her statements.  She complained about my tone of voice.  She kept talking as I drove home and let drop her “Maybe eventually you’ll be nice to me” statement.

Normally I’m able to let that go with my repeating internal mantra that it’s her disease talking and I shouldn’t take any of this personally.  But I couldn’t — not after her ear panics, her repeating brain surgery theories, eight hours in the ER and her undercover nurse cop theory, my struggle to convey her condition to doctors despite her interruptions and ramblings, and my being overwhelmed with frustration and insomnia.  My whole body was buzzing like a third rail, and I’ve been off coffee for weeks.

I screamed at her inside the privacy of the car.  Screamed and sobbed.  I just couldn’t take it anymore.  She said she was glad I was letting my emotions out so that I wouldn’t have a heart attack.

She kept after me to express my emotions — part encouragement from her and part harangue — but I needed to be alone and to decompress.  She wouldn’t let me be and followed me into the studio.  She wouldn’t leave when I asked her to.  Finally I tried guiding her out the door.  When she pushed back I lifted her up and carried her past the threshold, then slammed my studio door and locked it.  I did whatever I could to help myself calm down.  Eventually I was able to take a nap.  Eventually we could have a calm conversation and reach a truce.

Things were still rocky on Wednesday.  Finally on Thursday, with a lot of bed rest, I started feeling like myself again and wasn’t ready to jump out of my skin whenever she opened her mouth.

She took another single dose of the eardrops and then — again — didn’t want to continue use.  She didn’t want to see her GP for a follow-up.

I’ve reached the conclusion that I need to put together a quick-reference guide to share with medical professionals with respect to my partner’s condition.  It will include the negatives as well as the positives — as in, there is no record of the brain (or lachrymal) surgery she claims she received, and she has not been diagnosed as being Marfanoid or any of the other conditions she applies to herself, that are not backed up by a doctor.  I want to be able to just hand this document to medical professionals, who can read the particulars for themselves.

Otherwise, I have to fight to convey the information doctors need, which then leads to my partner complaining that I’m fighting with her.  It sucks when I try to be an advocate while my partner is uncooperative, self-medicating, self-diagnosing, and dismissive of what her own medical records and doctors really say.

A big positive in all this — in addition to the fact that our ER visit turned out to be for something very minor rather than major (though I couldn’t help feeling at times that we were just being stupid about it) — is the tremendous patience the doctors and nurses have shown us.

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Avatar of ejourneys

About ejourneys

Ejourneys cares for her partner, who has MS that acts like traumatic brain injury.  Author of Caregiving in Five Lines (all proceeds from sales benefit Caregiving.com) and contributor to several CareGifters anthologies, ejourneys is a panelist on Your Caregiving Journey's "Hot Topics" show.  She manages the groups Gay, Lesbian, Bisexual, and Transgendered Caregivers; MS Caregivers; and Caregivers Create; and is a co-founder of VRide.

4 thoughts on “Not My Best Week

  1. Avatar of TrishTrish

    ejourneys, I’m sorry for your crappy week. I know you are crediting the doctors with extreme patience, but my goodness! You have shown extreme patience ever since I’ve known you and it is completely understandable you just couldn’t take one more thing. It is already exhausting to be in the ER for hours on end but to add to it the conspiracy theories and misinformation you HAD to correct – oh boy.

    You demanded your space to get some rest, she didn’t give it to you and you did what you had to to get it. My heart and big hugs go out to you. (Do not let guilt creep in once the dust settles.)

    I really hope this next week is better. I’m wondering what else you can do for you or what I/we can do for you to help. <3 <3 <3

    Reply
    • Avatar of ejourneysejourneys Post author

      Thanks, Trish! Thanks to two years of therapy, I think I’ve got the guilt business licked. :-) *fingers crossed* Partner and I are both in a better place these days. We’re still able to talk things out after the storm.

      I needed (and got) a LOT of sleep, which helped tremendously. More time outside will help, too (working on that). And being able to vent here has been and is awesome! :-)

      Thanks so much for joining me on this long read. Hugs and <3 <3 <3 back at’cha!

      Reply
  2. pegi

    OMG, ej, I’m exhausted just reading your account! I’m with Trish, I have often admired the patience you’re able to show your partner. So glad you were firm in taking care of yourself. A well deserved and too long awaited mini break. You are not alone. Sendind positive thoughts for more peaceful days ahead.

    Reply
    • Avatar of ejourneysejourneys Post author

      Thanks, Pegi! And thanks for plowing through the account. :-) Fortunately, I know that I have earned every break I can get. :-) Sending positive, peaceful, and restful thoughts your way, too. (((Hugs)))

      Reply

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