“latch on to”

Every now and then I do a search for “post lyme (disease) syndrome” to see if any new research results or information has been found.  Sometimes I find something interesting and useful, like this, Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms.  Often, it’s just rehashings of the “chronic lyme” controversy, like this Lyme Disease Complicates Doctor-Patient Relationship.  Despite its promising title, the story is actually less about the complications of the doctor/patient relationship for people who experience symptoms after standard treatment and more about a particular infectious disease doctor’s take on non-standard treatment protocols (the continuing use of antibiotics), and a caution that patients “latch on to” information on the internet to their detriment.

I found the doctor’s portrayal of how patients end up thinking that they have lyme or continuing lyme rather insulting.  It’s a significantly oversimplified one size fits all approach that paints everyone who wonders if they have reasons to consider lyme, treatment refractory lyme, undiagnosed lyme, post lyme, or “chronic lyme” as a boob who believes the first thing they read on a forum thread.  He also completely skips over the part that many of us, with or without a history of a lyme diagnosis, experience:  the doctors who are dismissive, invalidating of our symptoms and the impact they have on our lives, and who sometimes are just horribly uninformed.  That does happen, and when it does, it makes it a lot harder for a patient to be guided by that doctor.  I believe it has a cumulative effect as well, depending on how bad or how many bad interactions like this a patient has with health care providers, it can create a sense of deep distrust.  All of this is skipped over in the article, not even acknowledged as an afterthought or footnote.

I blame the interviewer to some degree – if this was meant to be about how symptoms of unclear etiology get in the way of doctor/patient relationships, then he did a poor job in guiding the doctor to discuss that.  I can’t help thinking maybe it wasn’t meant to be this but this was the label the editors slapped on the interview after listening to the doctor go on about how stupid and/or gullible patients are.

tick phobia

As I prepared to go to bed last night, I carelessly tossed my cell phone and now ubiquitous wrist brace down on the mattress while I rummaged for my night time pills in the bedside stand.  And something went -ping-scurrryscurryscurry off the bed, onto the floor, and under the night stand.

BUG!  And me barefoot and in a sundress.  See, this is why I hate that summertime makes me dress like a carefree and helpless little girl.  I am NOT carefree and being scantily clad makes me feel like I am vulnerable in ways I’d rather not be.  Yeah, I know, this sounds like your run of the mill body dysmorphic disorder…And admittedly I do think my feet look like large bony pale monkey feet, but this state of undress-distress is more conditioned by wanting to be contained and safe than by wanting to not show my body.  I’m quite happy in a floor length figure hugging dress, providing I can wear combat boots to do things like STOMP ON BUGS that invade my space.

My husband came into the room a short time later to find me sitting uneasily on the bed, legs pulled up under me, cell phone and charger in hand.  In response to his quizzical look, I whined “I wanted to charge my phone but I need to plug in the charger back there” (gesturing to the nightstand) “and a big bug just ran off the bed and under it!”  “What kind of bug?” my husband asked.  “Big, black, I dunno, it had legs.”  “Well I should hope so.  It would be more alarming if it didn’t.”  “Ugh, and there’s another bug up there on the ceiling.” I pointed to a little bug that was working its way in and out of the ceiling tiles in the corner just past the window and my side of the bed.  My take on bugs is if they invade my space and they are over a certain size and speed, they get obliterated.  I don’t want to have to concern myself that they will come at me, and so I take preemptive steps, which usually culminate in my throwing the largest book I can find on them then jumping on that and stomping while muttering “die die die fucking die”.  A couple of my employees have witnessed this.  It is now termed the “die bug die dance”.

My husband and I debated the merits of moving the nightstand and looking for the leggy bug.  My husband offered to do it.  I was disgusted with myself for being so whiny and helpless so I said  “No, I don’t want you to do it.  I don’t want to do it and I’m certainly not going to ask you to do something I won’t do.”  He satisfied himself by peering under the nightstand with the flashlight.  “I don’t see anything,” he announced.  So off to bed we went.

At some point, I realized that it wasn’t as cool as it should be with the air conditioner running.  Hm.  I got up.  I pulled back the curtain at the window next to my side of the bed.  Ah.  The window was open.  Crap.  Well, now I know where the bugs came from.  I closed it and went back to bed.  But…if those bugs got in, others may have.  We just moved to tick central.  I avoid being outside as a rule now, I don’t walk on grass, I try to avoid walking under trees.  I do not want to be another tick buffet.  And so into my very sleepy head scurried fears that a tick may have gotten in the window.  A deer tick certainly wasn’t as big as the black leggy fucker who was currently planning his 2:00 AM assault on my pillow from under the nightstand.

No sleep for Dyspatient last night.  Up at 1:30 AM to have a cigarette and read.  Then back to my scary bed where I jumped at every stray tickle on my skin and pulled the covers up tight despite the humidity.

 

I’d consider this evidence of a general anxiety issue except that I have such a good reason to be worried about ticks and tick bites.  Still, while the reasoning is sound I think the behavior is a bit aberrant.  I chalk it up to experience plus my already hyper threat-attuned brain…now if only ticks were stompable and would just make themselves known rather than creeping around like the life wrecking disease riddled fuckers they are.

anti-neural antibodies anyone?

I think I may make copies of this and start handing it out to doctors.  Maybe send a copy to that monumental d-bag I briefly tried as a primary care so many years ago in the New England Outback.  This is the one who made a point of telling me “I don’t BELIEVE in chronic Lyme” at my second appointment when I complained of fatigue, eye pain, new joint pain, headaches, and memory problems 4 months after treatment with oral antibiotics for an acute Lyme infection (btw, his mention was the first time I had heard the term).

You know what?   I amgoing to send it to him.  Because it so nicely calls out a particularly obnoxious fallacy, a

image of an "EM" rash typical of lyme disease on a woman's torso

Dyspatient's big fat EM rash. An objective sign of Lyme Disease, until it's faded. File under: "why you should always take a picture"

pseudoscientific belief system dressed up as science because of the class of people who tend to hold and wield it (i.e., those engaged in scientific disciplines/professions).  The “reasoning” of this fallacy goes:  there is no evidence (which I accept) for the existence of this, therefore I will deny the possibility or question of its existence.    Therefore I will deny any attempt to address the cause for it.

The “which I accept” part is the lynch pin of the fallacy.  What one person – doctor, teacher, cashier, or plumber – will accept as real, legitimate, existing, is too often an intangible and mutable mark, arguably as subjective as symptoms like fatigue and nausea.  Think of all the debate over when life begins or ends…we have doctors and theologists and “the rest of us” who have weighed in on this question of existence for as long as we’ve had a discernible existence and not only do we not have an agreed upon answer but we still don’t have good, broadly accepted parameters for the question of what “counts” as evidence and what doesn’t.

When viewed this way, it is clear that what is contended as various scripts from the lyme disease controversies are played out in various doctor’s offices is not a case of this theory vs. that, or the validity of a particular hypothesis….

    like patient s/p acute lyme infection continues to report symptoms.  Is it possible that the acute lyme infection has created some (continuing) pathological state?  If so,  H1:  continuing/chronic lyme; H2: immune response to lyme infection;  H3: effect of treatment for acute lyme infection; etc.

…because all of those hypotheses, hell ANY hypothesis is inconceivable if you will not accept that there is evidence, i.e. if you refuse to accept the existence and validity of the symptoms reported by the patient.  And so what it comes down to is that what is contended is not scientific and not medical.  It more properly falls into the domain of morality and ethics.  It is the validity of one person’s subjective experience over another’s, in this case based on socioeconomic factors.  And when a person’s well being and suffering is on the line, it is one of the worst kinds of misapplications of reason and pseudoscience that I can think of to allow such factors dominate.

Lengthy preamble, I know.  I plead lack of caffeine and a three day long battle with a tenacious touch of migraine.

On to the abstract.  Full text is linked to the title.

Brain Behav Immun. 2010 Aug;24(6):1018-24. Epub 2010 Mar 18.
Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms.
Chandra A, Wormser GP, Klempner MS, Trevino RP, Crow MK, Latov N, Alaedini A.
Department of Neurology and Neuroscience, Cornell University, New York, NY 10065, USA.

Abstract
Some Lyme disease patients report debilitating chronic symptoms of pain, fatigue, and cognitive deficits despite recommended courses of antibiotic treatment. The mechanisms responsible for these symptoms, collectively referred to as post-Lyme disease syndrome (PLS) or chronic Lyme disease, remain unclear. We investigated the presence of immune system abnormalities in PLS by assessing the levels of antibodies to neural proteins in patients and controls. Serum samples from PLS patients, post-Lyme disease healthy individuals, patients with systemic lupus erythematosus, and normal healthy individuals were analyzed for anti-neural antibodies by immunoblotting and immunohistochemistry. Anti-neural antibody reactivity was found to be significantly higher in the PLS group than in the post-Lyme healthy

Copyright 2010 Elsevier Inc. All rights reserved.

sweating it out

I’ve been having miserable night sweats all week!  Gah – so not only does my sleep get disrupted, but I wake up shivering and drenched.  I’ve had bouts of this before, back when I had Lyme Disease and on and off some since then (when I was on hormones for the endo).  But what the hell?  Not infected, no temps (well, no greater than my usual slightly elevated temps).  I’m not even having a lot of overheating during the day since I’m at home and can control my immediate environment right now much better than I usually can at work.  It’s a pain in the ass!

adenomyosis

“That’s just a word for ‘fibroids’,” my neurologist said at my first appointment with him summer.  He had been reviewing my medical history.

    A bit of an excursionary side note here:  I always feel vaguely guilty when I list my medical conditions and/or recurring symptoms – like I have no valid right to claim to have them, like I am heaping it on, like I am writing out the invitations to a pity party.  Or at least, that I will be seen this way.  Why ever would a patient experience those feelings, one might ask.  I can tell you, they didn’t arise on their own.  These are iatrogenic, at least in large part.
    I used to try to keep it to only things I had a diagnosis for, a name for.  “Endometriosis, GERD, Migraines, IBS-D”  That’s a short list.  Again, because of the response of doctors.  “Who told you have …..” was a response I heard one too many times.  Interestingly, I’ve heard it for two things with confirmation – endometriosis and Lyme Disease.  “Who told you you had Lyme?!” one doctor said in an abrupt tone.  And this is when I thank my lucky stars I had the forethought to take a picture of my lyme rash.  The endo was questioned until I could firmly reply “It was confirmed by laparscopic surgery”.  But until I could say that, it was considered by some doctors a questionable diagnosis.
    So I know from those two test cases that there is a good chance I will be questioned, sometimes rather ham-handedly, about what I put down on that form.

The neurologist was not the first to question “adenomyosis”, a diagnosis I was given in 2007 after my last lap for

illustration of uterus with multiple fibroid tumors

Fibroids, from http://www.nlm.nih.gov

endometriosis.  The first one was a GYN I tried out briefly.  “That diagnosis can only be made after hysterectomy” I was told by the stressfully thin looking impatient young doctor.  I told her that I was just reporting what my last GYN had said, that he had been the one doing the surgery, and that he had made the diagnosis based on imaging and his observations during the lap.  At this, she bristled with contradiction, as if I had personally insulted her.  Really, I greatly dislike this sort of doctor, well to boil it down -I dislike this sort of person but especially so when they are in a person-caring profession.  No one is as smart as me! seems to be their motto.  Needless to say, she did not remain my GYN long.  Moreover, her estimate for recovery time post-hysterectomy was an unqualified “2 weeks”.  No “every patient is different” or “it depends somewhat on what we’ll find and need to do when we’re in there”.  And this, ladies, is why I vowed never to go to another general purpose OB/GYN again.  Any OB/GYNs out there reading this who don’t suck, I apologize for painting you all with a broad, drippy brush but time and again in your offices, I’ve run into various versions of this soul scouring combo of ignorance, arrogance, and dismissiveness.  I’ve had it with the bad apples in your bunch who should just stick to pap smears, breast exams, handing out birth control, and perinatal whatnot.  I’ve had it with being a pinata for someone who decides to engage in a farce of diagnostic gynecology despite having a clear lack of preparation for that sort of thing.  It may come down to a flaw in the general OB/GYN training or it might have to do with a selection bias – too many of a certain kind of person who chooses to go into OB/GYN (babysniffers?).  Whatever the reason, the field is rife with men and women who do more harm than good with it comes to dealing with gynecological pathology in a general practice rather than referring the patient out to someone with more experience.

Illustration of a uterus with intramural endometrial infiltration, adenomyosis

Adenomyosis, from http://www.med.nyu.edu

Back to the neurologist’s comment.  It turns out that no, adenomyosis is NOT just another word for fibroids. They are distinct entities, with some significant implications if one if mistaken for the other.

And as for what I put on my medical history forms now – I still go back and forth.  If I’m feeling like this doctor needs to know everything, I list by name what has been confirmed with objective tests or impressions (and yes, that includes adenomyosis and migraine) and for the others, I write descriptive symptoms, e.g. “chronic joint pain” “chronic fatigue” “nausea”.  And mostly, these days I just try to avoid situations where I would feel uncomfortable doing anything else.

My new dentist is a poet, but the other guy isn’t

“How did you find us?” Well my husband works at one of the B.A.T.H.s in the city and he was seen in the dental clinic there and he asked if there was anyone they recommended here in town and they recommended this dentist here.  So here I am.

With the poet.

Who is quite nice and has Sunday hours, of all things.

What kind of a freak would schedule a dental cleaning in the middle of two months of migraines?  The kind who is convinced that nothing she does or doesn’t do is going to change whether or not she has “vert” or head pain so why wait?  I mean, I could wait and end up having a dental cleaning the week after a spinal tap and won’t that be fun?

The reason for today’s appointment was in fact that I was overdue for a cleaning.  I was overdue for an appointment, overdue for a dentist.  I liked my dentist in the New England Outback quite a bit.  There were exactly three things I liked about the New England Outback.  My vet, my dentist, and one other thing that slipped my mind but which I know existed and I will probably remember as soon as I stop blogging and think for a minute.  Anyhow, I liked my dentist down there in the land of Martha Stewart and Lyme Disease.  And then I moved up here to the land of Lobstah and B.A.T.H.s and I got a real stinker right off the bat.  He sucked.  Turned out he knew my cousin.  In fact, my cousin’s college roommate (and best friend) turned out to be the dentist’s daughter (who worked as one of his hygenists).  I should point out, my cousin and I are not and never have been close.  Of that set of cousins though, she was nice.  A good kid and the most sociable of the set.  But we were not close and that not closeness only grew as we became adults.  I’ve seen her sisters only at funerals over the years.  I haven’t seen her in nearly 15 years I think.  So the dentist’s daughter’s connection was a passing curiosity, a “hm, small world” thing.  It was not enough to overcome how much he stunk as a dentist.  I’m sure he was good if you are a healthy and hale robust person but I’m just not.  So I had my cleaning and first appointment last year in the Fall and he remarked that I was on “too many” meds.  Um…how about a big dose of Fuck you, BID?  Nah, I was polite.  But taken aback.  I was not happy about that.  It made me feel bad.  Yes, I know, I get angry when I am hurt (hence the swearing and whatnot).  It feels better than just feeling hurt.  But I went back because I figured whatever, I don’t need to love the guy, he just needs to be competent.

Unfortunately, he wasn’t.  First time he did work on a tooth, he put the needle in and it didn’t take.  Ok, so he put it in again.  And he put it right into the joint.  And wow, that felt very unpleasant.  It wasn’t pain like stabby, pinchy shooting, sharp, or burning sense.  It was pain in the very bad pressure in a very bad place where there isn’t supposed to be pressure like that and wow your body just does not like that one bit at all sense.  Ever had that?  I think the only other places I’ve felt something similar is when something is coming out of joint.  My toes pop out of joint on their own sometimes (ouch) and my hip did a little thingy back in 2006 that started all this hip pain stuff.  So it was like that.  But in my face.  And it was very, unpleasant.  And I passed out.  Slowly.  As usual.  Because I always go out slow and ugly.  It starts with sweating and a bit of groaning, that’s the noise of “alert” I think.  As in “shit, hey I’m going down”.  Then I pull in, arms in legs up and head down which in a dentist chair means head up because hey it’s just a not very consciously mediated reflex.  Then the gagging and wretching starts and after that I’m not much for an eye witness.  I’ve been told there is convulsing.  In this case, there was O2 and pushing me back into the chair so my head was down.  That helped and I was back fast.

I was then lectured about not leaning forward when I’m feeling like that.  Yes, that’s exactly what I needed then was a lecture on how to act when I’m passing out from Dr. Stabby on controlling my impulse to put my head “down” (hey you try explaining to your body that forward is actually up when you’re already down on your back).

I decided I wasn’t going back to him.  When they called me to schedule my cleaning a few months later, I told them I wasn’t coming back and I told them why – the medication thing and the passing out thing.  I wasn’t horrible and screechy about it but I didn’t hold back either.  I was not having a very good day and that kind of made it feel a little less bad.  I asked my husband to ask his dentist (who he liked) for a recommendation and I got this new guy.  I didn’t make an appointment.  I said “hey I need to do that” many, many times.  But didn’t.  And my teeth would hurt sometimes and I’d think “I should make an appointment” and I wouldn’t.  And my mouth would break out in blistery things and raw bits and I would think I should make an appointment” and I would swish with salt water and benadryl and left over lidocaine (yes, I got the good stuff baby) and maalox (my very own magic mouthwash) and I wouldn’t.

And then then other week, my teeth hurt like hell.  Ok, I thought.  I don’t need that on top of everything else.  I’m calling.  So I called and told them I was having a lot of tooth sensitivity and they got me in at 6:30 (wow, they have 6:30 appointments?!)  And I got the poet.  I found this out by reading his bio.  I do think this is rather cool, in case you can’t tell.  I have a bias for the literate, I do.  And of course, on my way out they hit me up for a cleaning.  Ok fine.  I scheduled it.  And I kept it because like I said, why not.  There is no reason at all to believe that I will not have a headache next week or the week after, or that even if it goes away for a week or two that it won’t come back and, well, you get the idea.  I don’t put things off.  Remarkably, I felt pretty decent while I was there.  I think laying back in an air conditioned chair was a help.

The person I’m not overly enchanted with is the other guy.  We’ll call him the “not poet”.  I asked Dr. Poet DMD if he knew anything about whether my metal allergy would be a problem with the metal fillings I had.  My previous dentist had put in a really deep one that was right on the gum line and took up a lot of tooth.  I’ve been having some mouth sensitivity and blistering for a while now.  I don’t know if they are related but I’d like to find out and I don’t know how to go about checking.  “What do you do for that?  I mean, can I get a piece of amalgam and just see if it gives me a rash?”  He said he’d check.  He checked with the Other Guy, who came to talk to me on my way out and who basically grilled me on why I wanted to know about this, what my mouth problems were, and lastly, in detail, why I thought I was allergic to metal?  Was the reaction right away or was it after a few hours?  I swear,the guy was acting like he was cross examining the hostile witness.  Did I stumble into some kind of crazy controversy thing here?  It was as bad as if I had said “I think I might have chronic Limes disease” or something.

So.  I like Dr. Poet DMD but consider me not enchanted with Dr. Other Guy Esq.

Hey, at least my teeth are clean.  And my vert and headache levels were only moderate today, only a couple moments of severe and the nausea is manageable – which I count as stellar.

good and bad

The Bad:  The doctor’s appointment.  Not all bad, but I left (a) super hungry (bit of a wait before hand and it ran into dinner time) and (b) not super happy.  Too much talk of Lyme, Lyme left overs, Lyme-you-don’t-still-have-it-but-it-might-have-fucked-you-up-forever-the-end, etc.  Not by me, mind you.  To me, by him.  And to me, it’s like that annoying song that apparently everyone but you loves because you keep hearing it everywhere.  It’s like the medical macena.  He also played me the runner up for most annoying thing I hear over and over from doctors category:  “Has anyone diagnosed you with chronic fatigue syndrome?”  God damn I hate that question.  Because the honest answer is something like “No, but they sure like to bring it up!  So, do you want to be the first?  Step right up!”  Instead I say something like “No, but doctors have mentioned it.  They’ve also said ‘chronic lyme’, ‘post lyme chronic fatigue’, ‘post lyme syndrome’, ‘treatment refractory lyme disease’ and a lot of other stuff.  But no one has officially diagnosed me with any of it.”  And I feel like I sound super defensive and cranky.  Probably I do.

The Good:  A student with Asperger’s syndrome made eye contact with me today.  My first two meetings with him involved him looking nearly exclusively at the floor about a yard away from his right foot.  Today, blam, he looked me right in the eye.  I’m somewhat ashamed to admit, I can’t remember right now what he said.  I was so, well what’s the right word?  Not surprised, not pleased….um, pleasantly engaged in the contact.   I’m hiring him in the Fall because he seems like a nice kid, because he kicks ass with computers (kid’s running windows as a virtual machine on on old macbook he’s nursing into its “golden years”), and because he said he wants to work on campus, “maybe at the library.”  I suggested he could maybe work for me – I’m always on the lookout for nice people with computer skills, and I have a soft spot for people whose social confidence and/or network might be helped by working for a boss who is very direct, very empathetic, and who takes an active interest in mentoring and providing skill learning opportunities, i.e., me.

He said he would think about it, then returned the very next day with a print out of his schedule saying his parents and instructor said they thought it would be a good idea so he thought about it and he would like to work for me.  Very cool.

So I’m just going to focus on that, my friend coming up, mani/pedi day, iced coffee on the beach, and a four day weekend.  And the hell with the other shit.

a little help

This week, I’ve needed a lot of help.  I got rides in to work from my husband, rides home from two different co-workers, and today my little brother is going to drive me to the doctor.

I’m not so great about getting help.  I have a hard time convincing myself that people will not resent needing to help me.  I mean, one or two “favors” is one thing but every day?  Multiple times in a week?  I have this basic, deep rooted assumption that it will be too much.

I have had this for a long time. I’m not sure where it came from.  On reflection just now, I was thinking that the guy I was with before my current husband might be part of the cause.  This boy’s name was Tom.  I say “boy” because although he was only a few years younger than me, he had the maturity of a 18 year old.  An immature 18 year old.  When I got sick with Lyme, he went from freaked out to useless in pretty much no time.  The relationship staggered on for a few years like that, but by the time it ended, him and his useless, immaturity enabling family had decided that I was malingering.  They didn’t say that, they said I was “no fun”, a “granny”, and many other worse things in private I’m sure.  By the end, it had gotten so bad that I was being blamed for any conflict between Tom and his family, and I do mean any.  Tom failed a class (in grad school, you don’t fail classes) and he and his narcissistic father got into a fight about it.  As his dad hung up the phone on him, he yelled something about Tom having “a problem” in his relationship with me and that Tom “needed to fix it”.  Let me just say for the record, I had been nothing but deferential to Tom’s family initially.  It wasn’t until after they promised help with things like a move and two surgeries Tom had and then left us high and dry that I started to voice any objection to their behavior, and even then, I tried very hard not to put Tom in a position where I was pushing him to damn them all.  I was careful not to trash talk them, even when they had done something really, truly rotten.  And believe me, they did do really truly rotten things.

Now I should mention that this is the boy who had type 1 diabetes and who treated it like a chemistry experiment.  That is, he’d eat utter garbage but dose with insulin to “cover” for it.  I had a suspicion that this probably was not a great way to manage diabetes, but it was his life and his body and I’m all about the autonomy.  Or at least I was.  Right up until he got gallbladder disease which announced itself with a nasty bout of pancreatitis late one night.  He was admitted to the hospital after many hours in the ER with Wendell (I don’t recall the ER doc’s last name, just his first) the Wonder.  Wendell the Wonder loaded Tom up full of barium and sent him off for a CT scan – a probably unnecessary CT scan (no other films, no no, just the barium blockade and the extra high radiation exposure CT).  Wendell the Wonder kept Tom in the ER thinking his pain would recede and abnormal labs would resolve just because Wendell was paying attention to them.  No luck.  Tom remained ill.  The CT didn’t show anything interesting.  Tom was admitted.

Tom had a HIDA scan which, the very bad GI doctor informed us, was “within limits”.  The bad GI doctor diagnosed Tom with Gastroparesis Diabeticorum.  I wanted to say “golly doc, I can assign fancy Latin names to shit too.  How about this one?  ‘medicus blennus“‘  Long story short, Tom had gallbladder disease and it took a month and an MRI to diagnose it post discharge.  In the intervening month, Tom would eat like an idiot and ask me to excuse it.  I had already said “I think your gallbladder is fucked.  You get sick every time you have a high fat food.”  I made low to no fat foods for him.  I knocked myself out doing this, but the family fed him things like pasta primavera with cheese and cream sauce.  We’d go out for dinner and Tom would say “Do you think I can get a bacon cheeseburger?”  I finally had had it with this shit, and started saying “I think you should decide for yourself.  I think I don’t want to deal with you being sick all night tonight if you do eat it, so if it were up to me, no – you shouldn’t.  But it’s your body Tom, and clearly you want the bacon cheese burger.”  I was not being passive aggressive, I had been very clear with Tom about how worried it made me when he got sick.  A puking type 1 diabetic is not ok.  I was just completely frayed – I couldn’t understand why he would put this choice on me.  It’s like someone who is stumbling drunk holding up the car keys and saying “do you think I should drive?”  I mean, what are you supposed to say the fifth, sixth, and seventh time they do it?  What do you do when you keep saying “no, I don’t” but other more important people convince him that he’s fine, that it’s not a big deal, that to cave in and limit himself is a sign of weakness not just of body but of mind and basic worth?

During this time and beyond it, I was struggling with endometriosis and the Lyme Disease left overs.  I had doctor’s appointments.  I got sick at work and had to find a ride home.  I passed out.  I missed deadlines in my PhD program.  I knew I needed Tom’s help in the day to day, especially during high volume work times.  E.g., I was scheduling my preliminary exams (for the PhD) and I asked him what month would be good for him.  We get two weeks to take them.  He and I decided on a period when he said he would not be at high work load and could do more of the day to day like shopping and food prep.  “Ok,” I said, “but please don’t start your dissertation proposal until I’m done, ok?  Because I know if you do, you’ll be immersed in that and you won’t have time for food and stuff.”

My prelim time came and about 1/2 week before it, Tom lets it drop that he’s going to start writing his proposal.  His advisor had recommended he do so.  What about our deal?  Well it seems Tom didn’t remember it.  Or didn’t give a shit.  Or didn’t think I needed that much help.  Or thought he could do both.  What he claimed was to not recall, but I had noticed by that point that he “forgot” pretty much anything that was inconvenient to remember or which created the kinds of conflicts that learning to handle is part and parcel of being a grown up.

Our relationship had been strained by his not taking care of himself throughout the gallbladder period, by his family’s just god awful behavior, and by his “forgetting” so many things.  We didn’t fight about my needs and what they meant for us as a couple.  He just shut down.  Ultimately, I and my neediness were blamed for the problems in the relationship.  By “neediness” I mean practical, physical things but also my reaction to finding myself not only without help but supporting this overgrown boy during a time when, for the first time in my life, I did not have extra energy-based resources.

So, this years long experience has not helped my belief that I can need too much for people, that people can burn out, that stressors like a chronic, unexplained illness can create resentment and distance and fractures in what was – under better circumstances – a rather nice, rewarding relationship (and what it can do in the not nice, not otherwise rewarding relationships is another story entirely).  But I know that all this just plugged into an issue I had prior to getting Lyme and not getting better, prior to the endometriosis going into overdrive, prior to the chronic diarrhea and weight loss and malnutrition, prior to the sudden but now chronic hip pain.

I’m not totally sure what that issue is.  I suppose this is what therapy is for.

Today, my brother is taking time off of work to come take me to a doctor’s appointment that I am ambivalent about.  It’s to see a cardiologist.  I have seen a cardiologist before.  But the new PCP is chasing down leads and one of them goes to cardiology.  I’m doing it, and it may win me another day on a monitor or stress test or whatever.  I doubt that it will show anything though, so I’m having a hard time feeling really committed to this.  And I feel like I may be “wasting” a favor, I may be burning through what I can’t help but assume is a limited supply of good, helpful intentions from the people around me.

Syncopest

On Friday, I will be passing out.  A little back story…

I pass out.  But to assume this means a clean and simple faint would be folly.  I pass out slowly and gross.  It feels like it takes forever.  I get sweaty.  I’ve been told I turn white and/or greenish.  I moan and groan, which is usually me trying to vocalize things like “get this blanket off me”, “cold wet cloth, please”, or “I think I’m going to puke/poop”, or really just that visceral “unnnnngg!” that loosely translates into “make it better please, oh god please”.

It is ugly.  Once it starts, it doesn’t stop easily – usually it ends with me unconscious and jerking (so I’ve been told) and/or going stiff.  “I practically had to break your legs to get you off the toilet” ex-husband doctor told me after I passed out on the can.  He had a lovely bedside manner (he was an ER doctor – not to malign the lot of them.  I’ve known some lovely, kind ER doctors.  Like, two ;p)

Now this shit all started when I was 8.  Or I at least remember passing out when I was 8.  Then again two more times in grade school.

  • Once at home when I was ill and looking for food.  I had stood up on the pantry counter and was rummaging around in the back of the shelf for where I was sure there was a cup o’soup and I came to on the floor on top of the toaster and a fork.
  • On a historical site field trip in 6th grade.  I was feeling unwell and told a teacher that I thought I needed to eat lunch.  I was told that we’d be eating soon and that if they let me eat lunch, then everyone will want to eat lunch now.  So I passed out in Paul Revere’s house.  I woke up on Paul Revere’s bed.  I have since learned that it’s not his bed or his house, but a reconstructed house on the site of Paul Revere’s actual house.  It sounds so much funnier to say I passed out and woke up in Paul Revere’s bed.

Then high school.  Lots of passing out:

  • At a restaurant with friends.  The staff brought me food at my friends’ request, salad with french dressing.  Then they threw us out because they thought I was on drugs.
  • Strapped upright into a seat on an airplane as we were landing in Europe after a transatlantic flight – the retching and groaning started and my mortified little brother tossed the barf bag at me.
  • At lunch.
  • After a bad IV stick for an upper endoscopy.
  • After a blood draw for mono.

College (9 year period):

  • At my boyfriend’s parents’ house after dinner.
  • At a subway station after a dinner out with friends.  A female friend was helping me walk to catch the train (last one, then we’d be stranded in the city) and some guys coming out of a nearby sport venue surrounded us and called us “dykes”.
  • In my dorm room after an awful lot of pelvic pain.  I was later told it was an ovarian cyst.  The student emergency response team kept asking me what I’d had to drink.
  • At work as a campus safety escort walker, later told it was “mittleschmertz” or somesuch bullshit.
  • Out at dinner with a nurse friend (“Jeez, why did you call 911?” I asked the nurse friend later.  “Because you were out for a long time and when I pulled your head up off the table, your eyes were rolled all the way back in your head.  And you’ve got BIG eyes!”).
  • On the can, Dr. Husband helped with that one – aside from the gruff manner, it was honestly the best response to my passing out.  Got me (a) out of the upright position I was stuck in and (b) onto the bed with my legs up (c) without  hurting me and (d) didn’t freak out and call 911.

Grad school (9 year period):

  • Dinner with my sister.
  • New Year’s party at a friend’s house, horrible – I was with my boyfriend, who was a type 1 diabetic.  He checked my blood sugar “It was below 50” was all he’d tell me later about it.  He got me the HARDEST piece of chocolate I’ve ever put in my mouth to “bring my sugar up”.
  • At my apartment after I’d been up late working at the computer.  Had to pee, but also was feeling gross.  Stood up, and thought “fuck, if I go lay down, I’m going to wet myself.  I’ll pee first”.  You know what?  BAD idea.  That one got me a concussion and a super cranky ER nurse who kept asking me what I’d had to drink that night.
  • At home after dinner x 3.

This year:

  • At home after dinner in August.
  • At the dentist’s office – a very near “near faint”.  I had medicated in advance and I was whisked down to a flat position and given O2.

The high school stuff  happened in front of medical staff twice so I was worked up for seizures.  I couldn’t drive because they were so frequent that every time I would get close to going the required amount of time without a “seizure”, another one would happen.  Mind you, my EEGs were normal.  But they called ’em seizures because I had gone stiff and had a few jerks, and so I was stuck.

I’ve spent a good deal of time trying NOT to pass out.  Part of why I don’t go out and do much socializing these days is that I feel so fatigued and shaky so routinely, I’m about this close (hold finger and thumb together) to a faint.  The feeling is terrible.  And people are terrible at dealing with it.  No, really, they are.  The diabetic (who had passed out plenty of times himself) with the super hard chocolate was the same guy I was with the night of  “pee or pass out”.  After I staggered into the bedroom and fell (hitting my head off a large chest of drawers, the door, and a wall on my way down), he pulled me up by my stiff arms and onto the bed.  I was Soooooo sore.  I complained bitterly that my arms were inexplicably sore many times before he told me what he’d done.  Anyhow, so there’s that.  My basic distrust of people and them working hard to earn it.  And there’s the whole food thing.  I’m more likely to pass out if I haven’t eaten, but conversely, I am also likely to pass out after a big meal.  When, what, and how you eat can be more readily controlled in your home, or at least when you don’t have to do things by committee.  Like with inlaws.  If I’m having a blood draw or an IV placed, I warn them. I lay down.  And I take a lomotil before I go because it’s got atropine.  Yum.  I’m not sure how legit this use is, but the neurologist who tapped my spine in 2002 (lyme) gave me some pre-procedure and hey, I didn’t pass out.  I nearly did, a nurse had to hold my legs up on her shoulders for quite a while, but I didn’t pass out even though I had a needle in my spine and it wasn’t a very easy tap.

And so, I have spent a lot of time and energy since high school trying to find ways NOT to pass out, or at least not to pass out in public (outside my house counts as “in public”).  I got the call today that the tilt table test my nPCP ordered is for Friday.  This Friday.  I was thinking maybe next week, or the week after.  Plenty of time to psych myself up for it.  But blam, it’s in three days.  Three days or the week after July 4th, when my inlaws are coming up.  So it’s in three days.

Ok.  I can do this.  I’ll be all hooked up to a monitor.  And strapped in.  And they’ll put me down when I pass out.  It’s still hard to think about intentionally passing out though.  Wish me luck.

Pt. 2 Uterus?

The continuing tale of coordinating my medical care wrt a gynecologist who doesn’t suck or freak me out.

I should backtrack a bit here.  In early March 2009, when I was still living in the NE outback, I started feeling as shitty as I felt when I had the acute Lyme infection in 2002 – 2003 (oh yeah, btw, I had lyme.  You should read the “About Me” page if you haven’t already).  I’ve not felt well since having Lyme, but I had not felt that bad that consistently and enduringly other than when I caught the flu in 2004.  After a few months of some spectacularly failed attempts to either work this up or at least address the symptoms with my last outback primary care and her wretched PA, I moved up here in July and had to start all over.

And I found that I was sick of starting over, sick of looking.  I was worried about work – about being sick at work, about missing work because I was sick, and also about missing work because I had medical appointments.  The only one I had any control over at all was the medical appointments.  And so that is the one I decided to say “fuck it” on.  I did pick a new primary, she isn’t great.  She, like everyone before her, ran a shitload of blood tests.  Actually, she only ran a subset of them, so a small shitload I suppose.  They came back (mostly) within normal limits except for showing some signs of malnutrition.  She burned out FAST – not with “get the hell out of my office you crazy lady” attitude.  She was more likely to say “oh I don’t know what else to do”, and then schedule a random x-ray or sign me up to have the wax violently blown out of my ears by some unfortunate medical assistant.  On follow up, I was suddenly cured of everything.  Or at least, this was how she acted.  When I mentioned something indicated that I wasn’t, she seemed to deflate in front of me.  Cue another round of pointless x-ray, cbc, and liver function tests.

In the meantime, since May of 2009, I had been recording my symptoms.  The symptoms had seemed to ebb and flow on a somewhat periodic basis.  In June, I added in a general rating of activity and stress (emotional) for the day.  Was it my period?  Nah.  But it was my post period.  \Turns out, no matter what else was up physically, emotionally, practically in my life, I felt MUCH worse post menstrually.  This was a little hard to tell at first because with the hormone releasing IUD (mirena) in place,  my periods were nearly non-existent.  I recorded and counted and it really did seem that although I sometimes had spikes of feeling like wrung out crap at different times of the month, those tended to go with higher activity/stress days.  What remained was the post menstrual crash.

The mirena stopped being so helpful.  In the Fall of 09, I started having neuro symptoms I tend to associate wtih migraines with very disruptive frequency.  I had been struggling with ovarian cysts since September 2007,  just three months after the mirena went in (which the mirena “info for providers”) lists as a possible side effect but which a new and god awful PA at the outback doc’s office said she’d never heard of.  Then I started having pain pain pain at all times of the month.  Pain sitting down, pain standing up, pain pooping, pain having sex.  And the bowel symptoms kicked up again bad in late August 2009.  I lost weight.  I would have stuck out the ovarian cysts but not all of this.  Vertigo and general dysequilibrium became a very common part of my post menstrual crash.

I decied.  Time to go.  Take the mirena out.  Get a hysterectomy, maybe leave an ovary and if the endo symptoms persist, we can just nip in and take that little fucker out too.

I thought this was a good plan.  The first GYN I saw (Feb 2010) did too.  Except she was awful.