painful week

The weather has not been kind to me this week.  I really could use a little kindness.  Wednesday, something in my thigh pulled and my toe was desperately trying to break free of its proper alignment.  Yesterday, my right hip and pelvis decided to get in on the act, leaving me with pain here, pain there, pain pain pain.

So I hobble and limp around and wonder how long it will be before I am back to the cane.  If this weather keeps up, soon I think.  I recall that last Fall was bad too.  Must be the season change.

Hubby’s still sick.  Or sick again.  Bad GI stuff going on for him.  No idea what brought it on, but he and the toilet have been bffs since Monday.

And it’s busy time at work.  Not a good time to be sick, but what’s new.  I’m seeing my PCP next week to discuss how the not very special specialist appointment went, strategize on how to approach the next one, and possibly order the anti-acetylcholine receptor antibody that the last doc wouldn’t run.  Grrr.  And then it’s off to the ENT doc since the oral/nasal thrush came back last week….ah that reminds me, time for a fluconazole.  It’s helping, but I know this infection.  Usually, it has an initial response to fluconazole, then after about 5 days of waning it comes raging back.  We can add sinus pain to the pain list.

sometimes you eat the bear…

As a wiser man than me once said.

Yesterday, I did not eat the bear.  Yesterday, I saw the not very special specialist who has very selective hearing.

Why selective?  Because she apparently missed the part about the not sweating, although she did ask my husband “what does the sweat pattern on the back of her shirt look like” and my husband did say “she doesn’t have one anymore.”

I am in a foul mood.  The not very special specialist ordered a bunch of tests, only one having to do with pathology (direct) of the autonomic nervous system and when I called back to ask about an acetylcholine receptor antibody test, the answer (relayed by secretary) was “she didn’t order it because it’s not needed.”  Either she doesn’t feel I’m sick enough or she just doesn’t listen.  I am proud of myself for one moment.  During my history, after I had explained the vertigo that started in 2005 in response to her questions, she asked “did they do anything else after the MRI?”  I said “No”.  She looked at me sort of curiously and with what I interpret as incredulity “what did they say it was?  Did you see a neurologist?” “Yes, and like I said, he did an MRI and told me it was normal and that it was probably benign whatchacallit vertigo, or probably my migraines and had me take more migraine meds.”  She shook her head.  This happened in relation to two things, something else aside from the vertigo, I think the massive weight loss in 2005.  So later, after she told me that she didn’t think what was going on with me now was properly autonomic because I felt the skin pricks that she did on my legs, she commented that I didn’t look ok.  “What’s wrong?” she asked.  I said “I’m just sitting here thinking about how in five years I’ll be in some other specialist’s office telling them about the autonomic symptoms and how they got so much worse in 2013, and they’re gonna say ‘they didn’t do anything?'”

She kinda looked like she had a bad round of gas at that moment.  Yeah, I fucking went there lady.  Deal with it.

Oh another priceless moment that I’d like to frame.  After she tells me that it’s good news that there doesn’t seem to be much wrong with my autonomic function (because I felt the skin pricks, she was very firm about that), I said “I suppose it is reassuring that I won’t have to catheterize myself in a year to pee.” and she says, no lie “well I didn’t say that.”

No really, she did.

So for review, let’s list my symptoms that are not autonomic, according to the not very special specialist.

  • Dizziness and lightheadedness
  • Fatigue
  • Tingling and tremors in extremities
  • Extremely low blood pressure
  • Syncope and near syncope
  • Tachycardia (POTS)
  • Bowel dysfunction/constipation
  • Rather sudden onset gastroparesis with 12 lb weight loss in 3 months
  • Hypohidrosis
  • Dry eyes
  • Chronic oral thrush, suggesting a rather dry mouth
  • Heat intolerance and flushing
  • Erythromelalgia

I do not have much hope that the next very special specialist will have much else to do or say either.  I guess I just don’t come across as sick enough.

getting it wrong

I finally have my appointment with the runner up very special specialist today.  I’m not sure that she’s very special, but she did a fellowship at the BI-BATH’s autonomic center and she’s who is available, so off we go.  For an 8:00 appointment.  It’s costing me work cred and bowel function so golly I hope it’s worthwhile.

In preparation for this appointment, I got a copy of the tilt table test, the most recent one for which my PCP wrote a short but thorough referral citing the gastroparesis with significant unintentional weight loss, hypotension, orthostatic intolerance, and references the 2010 tilt test with syncope in his a request for a work up for autonomic dysfunction.  On this year’s tilt test, in the “referring Dx” section, it says simply “lightheadedness”.  Well that’s not right.

I think today, for the first time, I will actually go in armed with papers.  I don’t usually do this because my sense has been that it puts doctors off.  But there are two really specific things that they need to check on and playing the “not too knowledgable” patient has, so far, not gotten me very far.  Here’s the Mayo clinic’s Autoimmune Dysautonomia Evaluation Testing Algorithm and the Mayo Clinic’s Paraneoplastic Evaluation Algorithm.  A bit of overlap, which means a bit of “two birds, one stone”.  Shouldn’t be too tough to run, I just need someone to order, interpret, and follow up.

Here’s hoping that’s what I get.

damned if you don’t

I’m in another pickle at work.  My long awaited very special specialist appointment is Monday.  Monday also happens to be the ONE day all summer that absence will be exceptionally remarkable, because Monday is “Staff Retreat Day”!  An exciting several hours of hearing about how each department is soooooo busy and about what exciting student development programs and employee participation programs we can all get involved in.  I won’t say much more about that other than there are very few employee participations that I can participate in these days, much to my and my employer’s (rather differently based) consternation.

The staff retreat is only a half day, for a change.  Great news!  Um, no.  Because the half day that it occurs in is the same half of the day that the very special specialist is available to see me.  I have an appointment at the shockingly early time of 8:00 with the doc I’m calling The Runner Up.  She is the one I am seeing because none of the three “bachelors” I was trying to get in to are available until the Fall.  She is also, I’m told, very pregnant.  I’m told this incidentally by the scheduler at the Autonomic center at BI-BATH, “That’s the last day before her maternity leave”.  Oh.  Good.  So I get the runner up who will be high tailing it out of there after my appointment.  Uh, who’s gonna do follow up?

I’m trying to see it as a foot in the door.  As someone to order the damned bloodwork that will, hopefully, shed some light on whether my body is attacking itself for no good reason (chronic autoimmune disease) or for a good reason (cancer provoked autoimmunity).  Either one is a rarity, however I fit the symptoms and presentation to a T and have several history factors which make either a strong contender.  Lucky me.  So someone needs to look into it.  Either has a bad prognosis.  But they do have treatment options, all of which get less good in terms of halting the progress or recovery of function the longer you wait while your body destroys parts of your autonomic nervous system.

You can see why I am hesitant to wait another week let alone month or season on this.

Here’s the pickle though.  I told my boss about this and her comment was “(big boss) isn’t going to like it.”  Yes, I know that.  Thank you for the news flash.  But see, the reason I was telling you was that I want to know how to approach getting permission to go to this without it being a big red mark on my record.  No help from boss.  I explain about the cancer thing.  Ah, ok, now she says “You should go to the appointment.”  Right.  My thinking exactly, but still no help on what I’m asking about.  So I say “Would it help if I talked to (big boss)?”  Boss’s response?  “Maybe….”

Jeeeeeeeeeeeeeeeeeeesus.

I had been waiting in the hope that a cancellation would come through.  I’ve called the very pregnant very special specialist’s office three times in two weeks to nag them about me.  Sympathy, but no movement on the appointment.  Which leaves me now back where I started, do I talk to Big Boss about this.  I had been trying to be deferential to (immediate) boss’s authority and judgement but I think that she’s essentially abdicated her responsibility here, which leaves it up to me.  I think I’m going to do it.  If immediate boss is to be believed, Big Boss has been a source of some of the more problematic elements of accommodating my illness at work so maybe this can be a good thing.  So that’s on deck this week.  That, rescheduled meetings I’m not looking forward to, a GYN appointment to discuss my having turned into a wet nurse, and well just all kinds of fun.

early alert

I am trying to see the bright side in all this medical malarkey that’s going on.  I started thinking of it with the gastroparesis and now I’m thinking of it in terms of the Reglan side effects.  I’m trying to see these things as more than just troubling symptoms and helpful signals from my body that things are not ok.

I have a habit of ignoring my body.  I’m actually a bit abusive to it.  This isn’t to say I haven’t taken care of it for vanity’s sake.  Like all well (or at least thoroughly) socialized women, I grew up caring about my appearance.  So I would go to the gym, not to be healthy but to feel better about how I looked.  I take care of my hair and skin, or at least try to.  I wear makeup.  I try to dress nicely, as much as the various symptoms will allow (i.e. no more heels for me due to the pains they elicit, long skirts help me keep cool in warm offices, etc.)  So add comfort to the list.  Comfort and vanity have been the two driving forces in what I will attend to in term of my body.  But just good health, caring for it like the precious thing that it is, not so much of a motivator for me in most of my life, now that I stop to think about it.

When I first get a new symptom, my reaction is to be very, very angry at my body.  I call it a bastard, a devil, a cruel and lazy partner I am saddled with.  I push it through even moments of obvious distress, if I think I can get away with it without sacrificing other things that are important to me.  My body is a means to an end.  It has never been a goal in and of itself.  What a change of perspective to consider it as something I need to and should take care of just for the sake of taking care of it.

This is contrary to messages we get socially.  “No pain, no gain”.  I grew up in the 70s and 80s.  The advent of fashionable “fitness” coincided with my adolescence.  What a model – the body is something to be mistrusted and abused in the name of pretty.  To quote a popular song from the period, “It’s better to look good than to feel good.”  And indeed, I look ok.  When I gained a bunch of weight on the progesterone therapy for my endometriosis back in 2003, people stopped me in the hallways to tell me how good I looked.  Must’ve been the flush in my cheeks from the chronic pulmonary problems the progesterone was giving me….never mind the hemorrhaging I had with my periods for those months that I was on that evil substance.  I looked good, I must’ve been doing something right!

When I subsequently lost all of that weight and then some after the GI problems started rearing up in 2004/2005, my dissertation advisor said “I wish I had what you have!” in reference to her own weight.  This from a woman who dressed like she shopped at the irregulars bin from the LL Bean cast offs store.  Never mind that I was slowly losing energy, becoming more susceptible to diseases, failing to make the grade in the PhD program because of countless delays that my poor health was wracking up.  I lost weight.  So culturally important.  I was not impressed with this comment at the time, but that reaction was just to share some of the fury I felt towards my unreliable body with my advisor for being an idiot and discounting how this limited me and pushed my goals increasingly out of reach.

Thinking of taking care of my body is not easy.  Today, I’m trying to see the boob reaction to my gastroparesis med as a gift.  As an early alert sign from my body that “hey, this isn’t ok.  This drug that only kind of works?  Yeah, it’s screwing things up royally in here.  You’re taking it so you don’t have heartburn and so you have less nausea so what?  So you can work?  Well in the meantime, you’re fucking us both up.  I’m hurting, please stop.”  The same goes for the GP.  I ignored, largely, the ramifications of my other autonomic symptoms.  It helped that there are any number of doctors out there who will not only neglect the import of these symptoms but actively encourage me to neglect it too.  But the GP is a lot less ignorable, discountable.  It is partly because it’s so new, I have lived with the really short syncope fuse for so long, I’ve adapted.  Not entirely, and it is progressing and I mourn that, but it just means doing MORE of what I have done in the past to accommodate.  With the GP, it’s a whole new ballgame.  New rules, new penalties for failure to play by them.  New constraints to explore and learn.  And all of it has been something I cursed my body for, every time I’ve had to say no to a snack or an outing.  Now, I’m trying to look at it – at least some of the time – as an important sign that I have to pay attention to.  It may never go away, and that thought does haunt me, but it’s having come on the scene means I now just HAVE to pay attention to my body’s messages.  I have to make sure I don’t have cancer, and I have to try to find and treat what’s causing it, even if that means eventually giving up a full time office job temporarily or permanently.

I can’t quite say thank you yet to my body.  But I can take on the responsibility for having neglected it for so long and I can try to start mending my ways.  I can try to start treating it like its something other than a plague, some whiny and spoiled child which fusses over nothing.  This is not nothing.

moo

You have got to be fucking kidding me.  You know, body, you’re so fired.  I am not pregnant, and never have been.  I have had my uterus removed in fact. And I am producing and expressing milk from my boobs.  You have GOT to be fucking kidding me.

asymmetry

A word I can never spell without checking.

It’s a relevant word right now because since I’ve started paying attention to it, I’ve noticed some strange things about my sweating pattern.  Today’s discovery:  asymmetrical sweating.  I am currently sweating on the right, but not the left.  Uh…I’m pretty sure that’s not how I used to do it.  I distinctly recall scrubbing out sweat stains on some of my shirts, and stains on both sides.  Maybe I’ve always been right dominant?  Dunno.  But today’s peculiarity makes me wonder if I can join A at Playing the Hand in her circus act.

On the plus side, I no longer have to use antiperspirant.  I can get by with deodorant only and stay nice and dry.  And there’s this lovely grey silk shirt I own which I had to retire from my wardrobe last year due to its ability to highlight even the smallest drop of sweat…breaking that lady out now since I can wear it with relative impunity (relative because if I get stressed, angry, or upset, the faucets start running).  Down side?  Have you ever tried to find deodorant that is not also antiperspirant AND which doesn’t have aloe and/or “ocean fresh man musk” scent?  Difficult doesn’t even begin to describe it.  I’m getting by with some kind of new age “crystal” mineral deodorant right now.  Works ok, doesn’t make me itch like aloe would, and I don’t smell like a 1970s man whore.

how did you learn about…

At work recently I was asked “what’s your background?” by two seemingly nice middle aged women in my field.  See, what I do, there isn’t training for.  Not formal training.  It’s half librarian, part IT, part rehab/OT, part artist, part sound tech….you get the picture.  So how I learned about it is not a short story.  It involves my age (young enough to get immersed in computers and tech and old enough to have learned it the hard way, before GUIs); my interests (audio and audio/visual editing and mixing); my prior formal education and training (linguistics and speech/language psychology); my past work experience (clerical work at hospitals, research assistant in a broke down speech lab with sometimes questionable equipment); my “fun” (DJ-ing and training at a local community radio station)….you get the picture.  But underlying it all is who I am.  I explore.  I like to learn about things and I am a little obsessive when I start down the path of researching something.  I don’t like puzzles, I mean I do them but I wouldn’t say I do them because I love them.  I do them because they trouble me and eat at me until I solve them, and I will spend hours, days, and even weeks trying to solve them.  Oh yes, and I have a disability.  Several if you want to be deconstructionist about it.  This means an “opportunity” to apply my problem and puzzle solving skills daily if not hourly for myself.

So for example: I am working on an economics book for a student who is blind.  I have to transform nearly EVERY figure in it into something that a person with very low vision and limited color perception can see.  This means BIG font, thick lines, and pattern or sharp contrast based distinctions instead of color distinctions.  See a bar graph with lovely shades of lavender, pink, and baby leaf green?  Yeah, I gotta make that into stripped, grey, and black.  My colleague who used to do this used to hand draw things out on paper.  That meant the student had to transform it into digital or use a big unwieldy document camera to zoom up on it.  I do it digitally.  I do this not to be fancy, and not really even to save the kid the document camera step although that is an added benefit.  I do it because I can’t draw and my hand writing is illegible even when I’m trying hard because I have poor pen grip and very shitty fine motor control.  Always have, but it’s getting worse.  To make the pattern fills without exhausting my poor hands and wrists, I researched how to create custom patterns in Adobe Photoshop and voila – pattern fill in three clicks.

And this translates into how I approach medicine and my health.  I research, I read, I cross reference, I scan and save results, I take pictures of rashes and my hands swelling up and put them in a dropbox folder where I can easily show them at a doctor’s office.  For this, I worry that I am seen as health-obsessive.  I wish I could explain all this, how I am and who I am.  This is a puzzle, and it’s the real biggie of all puzzles I don’t like but that eats at me until I solve it.  So it makes sense that it would get a very large amount of my somewhat obsessive attention, doesn’t it?