salt

I have always loved and craved salt.  For a while, when I was married to the ER doctor, I avoided salt.  He was a bit on the hypertensive side, so I had gotten in the habit of reducing or eliminating salt in recipes and we didn’t have table salt.   For some time after that relationship ended, I continued the reduced salt habit.  Recently though, I’ve been told by several doctors that I need more salt.  “Ok, well then, more salt it is!” I decided happily.

It is becoming clear though, especially on days when I can’t eat much, that I am not getting enough salt in through food alone.  “You should be taking salt pills” said the genetics guy, in reference to my POTS-like symptoms.  “Why aren’t you on salt pills?” asked the RN at my neurologist’s office when we were talking about my very low blood pressure and habit of passing out.

I’ve tried Florinef, but it made me super nauseous.  I’ve tried Midodrine, but it was recalled shortly after I began taking it.  I don’t know if it’s back out yet, it’s one of those drugs that the FDA recalled because, as I understand it, it’s too old (that’s a loaded statement, I know, but it’s my interpretation of what has happened with this and another drug I take, Levsin/hyoscyamine. In the case of hyoscyamine at least, the reason for pulling approval was that the drug was old enough that it hadn’t been tested under the newer FDA standards for efficacy…let me break that down:  it’s not that this drug which many people with IBS-D type symptoms take is dangerous, it’s that despite us and our doctors finding it to be a helpful and effective drug, the (generic) drug doesn’t make enough money for a drug company to have invested in testing its efficacy and so the FDA has pulled its approval.  I can still get Levsin, but because of the FDA action, I pay for it out of pocket, and ration my pills like they were gold).

And so I think I will try salt pills.  No idea what’s a good one, I should probably ask a doctor.  But I’m asking here too.  If you’ve had any experience with them, let me know.

reminder

A reminder not to take things too seriously.  In the words of the Indigo Girls, it’s only life, after all.

I need it this week.  Didn’t get the job I applied for, which is too bad.  I think it would have been a nice fit.  I don’t mourn the position, but I miss the little bit of hopeful feeling it gave me to have applied to it – like a $20 bill in your wallet or the muted pleasure of getting up on a Friday morning to go to work.  I had this sliver of hope until Thursday morning when I got notice that I was out of the running for the job.

Most of what’s been eating at me this week is work and housing related.

  • I’m still being fucked about on the accommodations request.  I received a call late yesterday afternoon from HR to follow up on a complaint I made about a harassing coworker (we met, god, months ago and they are finally now writing up the letter, and they wanted to check in and see how things have been going with that coworker).  At teh end of the call, HR adds a note on the latest “progress” on my health accommodation request:  We’re “slogging through” the extra information we asked you to get from your doctor, it’s still “vague on the date of onset” (of illness(es)) “and the anticipated duration, but we’re working through it”.  Holy shit, really?  I submitted that request in early January.  To me, this latest update says we’re looking for excuses to deny your accommodations and are hoping that we can make a case that your health problems don’t qualify as disabilities.  What a thing to hear.
  • I still work with morons.  It’s been hot this week, legitimately hot.  Over 80 several days.  On Thursday, I went to take my lunch break (which HR says if I take at my desk or in my office, where I have some control over the room temp, I can expect to be interrupted and no accommodation will be made to back me up on that) in the break room.  Earlier in the day, the A.C. had been on.  When I went up, it was like walking into someone’s mouth.  Warm, damp, and slightly smelly.  Clearly, one of the cold blooded bastards I work with had been too cold, but they didn’t even open a window for fresh (if warm) air.  Without thinking, I exclaimed “Oh my goodness, it’s toast y in here,” after walking in.  A woman who has harassed me at work over health stuff said “Yes, and I know how much you love  the heat so I won’t open the window for you.”  Nice.  Really really nice.    Yes, I documented it.  No, I’m not going to make ANOTHER official HR complaint against her because the last one was handled so ham handedly that it caused more problems than it solved.  I am going to mention it at the meeting HR set up for next week and I very much consider it to be contributing to a hostile workplace, so if I do need to make a complaint to the EEOC, you can bet this will be in there.  I left, left the building, as was recommended by HR in their response to my request to be allowed to take a break in my building, drove to a place to get food, checked my blood sugar in the parking lot because I was feeling ill, and yup, it was on its way down – 82 and dropping I’m sure.
  • We still need to move and don’t want to.  There’s nothing good listed – we love living in a single family house, can’t afford to buy yet, and desperately do not want to live in a multi-family again.
  • How about health and medical stuff?  Well, that was more last week but I suppose the influence of it isn’t gone.  No lab evidence of mast cell disorder, according to Endocrine.  I’m discharged from their service (and good riddance!).  The abdominal pain was nothing discernible – which I found out (two days) after spending 5 hours on Monday night at my primary care’s office and the hospital across the street.  Home at 11:00 PM after being up at 5:00 AM, what a way to start the week.

On the plus side, my primary care is still as great as ever and was not dismissive.  My most recent round of lots of medical appointments is over (the clustering is because I try to schedule appointments during slow times at work and we just had break last week), ending with seeing the genetics folks at the B.A.T.H..  The doctor was informative and kind. He’s testing to rule out EDS type 4, and although he thinks I may have it, there is no good test for EDS type 3 (hypermobility type – reading the diagnostic criteria of it is like a checklist of shit that is wrong with me). He did have some good recommendations though. And he was sincere. And kind. I think I mentioned that but it bears mentioning again.

So here I am.  Lots of crap things, one small bright spot.  My natural inclination at times like this is to vow not to get my hopes up again because the let down is so bad.  But the bad is bad enough, or enough picture of a trivia game card with names of medical specialities as categories.bad (depending on how you look at it) that I need something.  If I were going to use anything as a sort of getting me through life-saver, I find the idea of a potential job or a nice new home slightly more appealing than “hey that doctor was nice”.  Also, there is the inherent drawback of investing any hope into the possibility of a unifying diagnosis in that each step of the way comes with more appointments, more missed work, more chances of getting a not great doctor or doctor’s staff, or a scary test… I was joking with my husband that, regarding the medical stuff, I feel like I’m at that point in Trivial
Pursuit where you have all the pieces but you still have to role the exactly right number to land in the center and you still have to get the right question.

I think instead I’m going to try for the absurdist path.  Rather than getting caught in the hopeful/unhopeful mindset dichotomy, I am aiming for a more immediate one that I suppose I could call a temporally relativist take on positive existentialistm.  And toward that end, I am going to try to laugh at the laugh at-able and consider that when things are tough, I am at least young (ish) and have love, and a cat, and a comfy bed, and clothes on my back, and I’m continent, and, well you get the idea.

Here’s a fun thing I ran across this week.  Looking for more of this sort of thing as a reminder that there can be fun in the chaos, diamonds in the coal, flowers in the dirt.

days not to go to the hospital…

unless you really, really need to.  Include (not exhaustively):

  • Any time in late June to late July (for teaching hospitals since this time period covers the influx of new doctors, new med students, etc.  The time period also covers Memorial Day weekend and the 4th of July, with the latter being the worse of the two since it involves booze + things that go BANG)
  • New Year’s eve (dark, icy, and alcoholic)
  • St. Patrick’s Day (Happy Drinking Day!)

And it’s St. Patrick’s Day weekend.

And I am having persistent left upper quadrant pain which is penetrating to my back and referring to my shoulder.

And my BP is 84/48 and just does not want to come up.

So this sucks.  I’d be more at ease if my back didn’t hurt and if I didn’t have a family history of aortic aneurysm.  A note on that:  despite all the health shittery I experience and look up, I am not the kind of person who believes that every ache, pain, itch, bump, or other oddity my body throws at me is a sign of a deadly or disfiguring condition.  I don’t start with the assumption and even “Dr. Google” doesn’t drive me there.  I know other people go there – I recently heard from a good friend who recounted her own freak out reaction after she googled a rash.  Looking up her symptoms convinced her she had a flesh eating bacterial infection rather than poison ivy (as it turned out to be).  I am sympathetic to this, but it is not something I can personally relate to.  I just don’t go there.  Ok so that’s the long version of me saying that I am not overwhelmed with anxiety and panic about the pain in my gut and back, however it is quite uncomfortable and given my family history, it is concerning to me.  I’d like to ignore it, toss back some tylenol and Tums, and get on with my weekend and I probably will do that even if the Tums and tylenol don’t help because (a) I hate going to the ER (b) I want this to be something minor and (c) it’s St. Patrick’s day weekend.  And you don’t go to the ER on St. Patrick’s day weekend if you can help it.

I went to the ER on St. Patrick’s day weekend once, several years back.  My sister had found her cat being attacked by a neighborhood cat and ran out to break it up.  In doing so, she was bitten by the neighbor’s cat.  A deep bite.  She went to the ER and they said “oh, its’ a cat scratch”, didn’t irrigate, didn’t examine the area, and sent her home with P.O. antibiotics.  Over the course of the day, her hand swelled significantly, was hot and red and tight, and she started to develop streaking.  So back to the ER I dragged her, on St. Patrick’s day night, of course.  She was admitted and given IV antibiotics.  But not after a LOVELY evening listening to the sounds of binge drinking and stupidity.  On the plus side, the triage nurse was a woman I’d worked with some years before that, Mary Hyphenated Irish last name, I call her in this story Mary O’Irish-McNurse.  Mary recognized our names on the sign in sheet and came out to the waiting area yelling  “Oh my god, it’s the ____________ girls!”  She took us in quickly, got my sister a bed in back, and then swapped with another nurse so she could stay in back with us.  I will never forget listening to the excellently wise cracking Mary O’Irish McNurse dealing with the drunk 16 year old in the bed next to my sister’s:

(sound of girl puking)

O’Irish McNurse:  “Say there, that looks like a Long Island Iced Tea…whad’you have to drink tonight?”

Girl (retching): “Ciiiiiiiiider!” (more puking)

My St. Patrick’s day miracle, Mary, is no longer at this hospital, and I am not overtly super sick, just having pain that knocked me down late yesterday afternoon from having an ok day to a crap one.  It’s bad enough that it woke me up several times last night.  I do not want to go to the ER with the puking 16 year olds and no Mary to get me in and CT scanned.  Wondering if this can hold off until Monday AM when I can call my doctor…

…who will likely say “go to the ER”.

grumble grumble grumble

I’m cranky today.  I was yesterday too.  I wouldn’t necessarily have recognized it yesterday – i.e. if I’d been asked, or asked myself, I would have said I wasn’t feeling particularly peevish.  But I was being particularly peevish.

Here’s why:

I’m always prone to a little extra crankiness when I have doctor’s appointments pending.  Not just any appointment, but the “follow up on tests” appointments seem to especially invoke this.  It is not helped by endocrine fellow calling yesterday to tell me that the results from the tests I had done weeks ago had not reached her yet.  She was being a bit pokey about it too.  “Well, I have an appointment Friday with you guys.  Do you think you’ll be able to check on them before that or do I need to call Quest?”  She said she would call, but she sounded a bit vague about it.  More like “I’ll get to it” than “I’ll get right on it”.  And I sort of understand that, I’m one of several patients she has and so for her my missing lab values are a drop in a bucket.  For me?  Well, I’m my only patient (usually, if husband or pet is sick then that expands but right now it’s just me).  So I called.  Quest followed up fast, I gotta give them that.  Turns out endocrine fellow gave them the wrong fax number.

Grrrrrr.

Endocrine fellow called me back later in the afternoon to tell me she got them and they were normal.  “Do I still need to see you this week then?” I asked.  She’s going to ask the attending.  I reminded her that they had discussed referring me to an allergist as a possible next step.  She will ask about that and will call back.  Oh more waiting!  And not just waiting, but waiting for the discharge from service.  Always makes me feel a little hopeless.

Meh.

I was really hoping for an answer.  You’d think I’d be used to this by now – I am but it still sucks.  I want a repeat of the labs when I am more symptomatic.  Late spring through mid Fall are my worst times, but I’m not sure I want to do it with endocrine.  I think I’d rather do it with primary care, who is a bit easier to get in to see – endocrine seems like they only book for one day a week, Friday, and it’s in town which means a bit chunk carved out of my day.  Which means more missed work.  So it was with this in mind that I realized I wanted to have them send my results to my primary care.  Crap, I realized it late.  It was almost five.  I called, got immediately put on hold.  And there I sat for 20 minutes.  Oh way to really piss me off.  I was actually expecting I might get the message service or voicemail – I could have left a message and that would be that.  But instead, I got the office shrew who I am guessing just didn’t want to deal with a late, last minute call.  Bad idea office shrew.  While I was on hold, I called on another line and left a voicemail, a shitty voicemail.  And while I was on hold, I also typed and faxed a letter asking for the results to be sent to my primary care.

And I guess they called back. I haven’t bothered to listen to it because I was so shitty in my message that I’m not sure I want to hear the response.  I just want my effing lab results.

This morning, I am going to the Neurologist’s office to have an EMG for my hand/wrist thing.  Which has been acting up because I was doing some programming at work yesterday.  And then it’s off to the primary care for a discussion appointment, the first of two I think.  I have non-high hopes for it.  I would like to think if I were in a better mood, I’d be less pessimistic.  I need to shake this, it’s not a good attitude to go in there with.

what are you waiting for?

Waiting is a common enough theme in this blog that I probably should make a category or at least a tag for it.  Here are some of the things I’ve been waiting for lately.

  • Waiting for Human Resources to process (i.e. find ways/reasons to deny) my health accommodation requests.
  • Waiting for an appointment with my primary care (this Wednesday) to go over the most recent documentation request from HR – I made an appointment  this time because of all the fruitless waiting I did last Fall with the initial set of accommodation physician documentation forms.
  • Waiting for results from my rather difficult to time 24 urine and “while you’re symptomatic” blood draw for histamine by products.  I have an  appointment this Friday, which I am trying to change to earlier so I don’t miss quite so much work, and so add to this list…
  • …waiting for the Endocrine clinic at B.A.T.H. to call me back.
  • Waiting for an EMG (also this Wednesday) on my totally screwed up right hand/wrist, which I totally screwed up by overuse at work and by waiting to too long to get it checked out.  It’s now not just an acute injury.  It’s a new trick for my body to do.
  • Waiting for an appointment with some genetics doc (next Wednesday) …this came out of the January appointment when I popped my hip out of joint getting out of the car, ended up being tacked on to the schedule of a Rheumatologist my primary care shares his office space with sometimes, and referred for checking out of the whole super bendiness/spontaneous dislocating/subluxing (subluxating?) stuff.  The appointment is to evaluate me (genetically) for Ehlers-Danlos syndrome.  I haven’t decided about whether to mention testing for a RET gene mutation – maybe I will ask my primary care about this on Wednesday.

What made me think of waiting was a post on Professor Lisa Gualtieri’s blog, which seems a decent blog.  I found it through an old article in the Boston Globe which was a recruitment call for patient bloggers for a survey research study (now closed, but a slide show of findings is here).  In her post Must waiting be inherent to medical care?, she gives what I guess can be called a taxonomy of waiting which patients experience.  Yup, seems right.  My least favorite part is the final step, “loop”.  That one kills me.

My strategies for waiting to be seen once I’m there include the following:

  • My primary care’s office is always backed up.  However, they are very good about letting you know how far behind they are if you call ahead.  I find this to be a good solution, and I respect that they are behind because my primary care has a lot of complicated patients and because he doesn’t rush through appointments with us.
  • I bring something to read, something to work on, something to play with, or someone to talk to.  I have played countless games of solitaire; written numerous pages of journal entries, letters, or poems; drawn on my iPad; listened to downloaded podcasts or episodes of shows like This American Life (interesting and informative).  It helps.  I feel bad for people who do not have access to mobile devices or engaging diversionary materials (e.g. books instead of insipid waiting room magazines), which help pass the time.  I have often wondered about starting some kind of book/tech drive at waiting rooms – E.R.s, O.R.s, and ICUs specifically.   One day, when I am not working, I  think this will be a project of mine.
  • I manage my expectations.  I do not expect to be in and out fast.  I think that this is easier, or at least comes more readily, for those of us with chronic illnesses.  We sort of learn to discard the stresses that we can, because there are so damned many of them.  If we let a one hour wait in the doctor’s office drive us over the edge, we’d have no resource left over for all the other things that are stressful in our lives.  This isn’t to say that it doesn’t get to us.  It does, but I think that if one were to calculate a “per visit freakout” ratio, one may find that the people in the many years chronically ill group inclined towards the lower side.  Dunno for sure, just a hypothesis.

So, what are YOU waiting for? How do you deal with waiting in medical contexts?  Have you found that your chronic illness has made you better or worse at being a patient patient?

my life in rashes

A comment thread on Anaphylaxing’s blog made me think of this today.  All the strange rashes, itches, swellings I’ve had that went unaddressed or unexplained.  So here’s a history – it spans quite a bit of my life, hence the title of this post.  This is a long one, so, well, I’m just warning you now.  I think it’s helpful for me to put this all down since this week is my follow up appointment with Endocrine on the two mast cell thingy tests.  Next  stop, allergist.  So a catalog of rashes and swellings and things related is probably a good idea.  I am posting it because I think that it may be useful for other people who have similar issues – who knows, if I eventually get a somewhat unifying diagnosis, this history may end up being very useful.

When I was little, as in pre-pubescent, I had a couple that stand out.

  • The time the whole family realized we were allergic to Tide detergent.  This was unpleasant since all of our clothes and bedding had been washed in it at least once before we realized the cause of our mass pruritis.  This involved, if I remember correctly, a fine pink rash for me with deeper red at the areas of high contact, e.g. waist bands.
  • One of the few times our parents let my siblings and me sleep on the porch during the summer.  It was too hot to sleep in our attic rooms, so off to the peeling paint porch we went.  It was probably lead paint, so we were not often allowed to spend time out there.  But it was so damned hot.  I woke up with my eyes swollen shut.  No more porch sleeping after that.
  • Swimming in the ocean in Maine, where we went on vacation in the summer.  Cold, cold water.  I would paddle out to the raft, scoot up on it and then scratch and scratch and scratch.  I always thought it was something in the water that made me itch so much.
  • Any time I was bitten by a mosquito, I had these crazy over reactions where I would get golf ball sized beet red lumps.  Oh so itchy for days.  I scratched the hell out of them, gave myself a skin infection once from all the post-bite scratching.
  • Non-gold metal.  Got my ears pierced with hypoallergenic surgical steel.  I thought they were infected and kept treating them as if they were all thoughout adolescence.  And yes, it did occur to me that something was up when I realized I had a similar sort of thing going on where the button of my jeans rubbed my belly, where any metal touched my neck (including claps of otherwise non-metallic necklaces), and where the backs of various watches I tried to wear rubbed against my arm.  Eventually, an aunt (my dad’s sister) mentioned that she and all her sisters were allergic to non-gold metals.  Ah.  Right.  Apparently so am I.

Adolescent to 20s:

  • Aloe.  A well-meaning hair dresser spotted an allergic reaction to the clasp in my necklace on the back of my neck. “Oh, that looks so sore!” she said “Let me put some aloe on it”.  And it went from an isolated red itchy patch to a weeping bloom of blisters by the end of my appointment.
  • Underpants.  Underpants elastic to be precise.  I was never a fancy drawers kind of gal.  I preferred brightly colored cotton briefs, the kind that Danskin used to make.  I loved those things.  Pretty colors so they didn’t feel like what are now called “granny panties” and they weren’t all baggy and loose.  But at some point, I stopped being able to find Danskins.  So I tried Hanes, which looked so similar.  I bought them and wore them once.  After a few hours, where the elasticized waist and leg holes had been in contact with me I had itchy welts.  Thankfully, I was still not sexually active yet and therefore only had to deal with my sister’s amused and horrified reaction to my silly looking rash.
  • Almay hypoallergenic liquid eyeliner – BURNED my eyes.  It was as if I had applied a thin line of acid along the lids.  I went without makeup for over a week waiting for the blisters to subside.  I now see the words “hypoallergenic” and just laugh.
  • Back to the beach.  My sister was into the whole fitness thing. I wasn’t.  I wanted to be healthy, and look nice, but I never could be bothered to give my body the time that my sister devoted to hers.  But I would sometimes tag along with her on her various body favoring exercises.  One that I could get behind was walking at the town beach.  I might see boys or friends from school, that made it more appealing.  We didn’t sand walk, we stuck to the concrete sidewalk that ran between the ocean wall and the parking lot/street.  It was one of the rare times I would actually wear shorts and sneakers.  It was a three mile walk to go up and back.  On windy days, at about mile 2, my legs would start itching.  I assumed it was the wind blowing sand into my legs and irritating my easily irritated skin.
  • The foot thing.  Oh god the foot thing.  It was horrible.  I wore combat boots a lot as a teen and young adult.  No, those weren’t the problem.  The problem was that I did sometimes want to wear summer attire that did not involve long cut off jean shorts and ass kicking boots.  So the end of my sophomore year in college, I got a pair of canvas shoes and wore them TWICE before the itching and blistering started on the soles of my feet.  It got bad.  Really really bad. Saw a dermatologist who said “that’s contact dermatitis”, unhelpfully, and prescribed cortisone ointment…which only occluded the skin and did fuck all to help with what was now skin that looked like a pretty bad burn – it blistered, sloughed, and repeated several times over in a painful, awful cycle.  I reasoned that if it looked like a burn, I would  treat it as such.  I stuck to a strict regimen of domeboro soaks and silvadene ointment and it started to clear up.  At some point, I decided that this was likely to have been either initially caused by or opportunistically colonized by a fungal infection and I added Tinactin spray to the mix (yes, I was a pain in the ass self diagnosing patient already at the age of 19).  And that was that – it cleared up entirely, with some seriously disciplined care.  I could NOT skip a treatment, and I had to wash, soak, dry, and spray at least 3 times a day.  It came back the next year….the next time I was better at treating it fast and it didn’t progress too far.  Now I just prophylactically use Tinactin spray and I never ever put my bare feet into enclosed shoes.  Unanswered questions include:   if it was a fungal infection that started this whole thing, why didn’t I get it wearing heavy black boots and socks in August but instead developed it wearing  breezy canvas summer shoes?  Why was it almost exclusively on the soles of my feet and barely affecting the areas between my toes?  I don’t know – I suspect an allergic reaction to the insole material which then broke down the skin and allowed an opportunistic infection..but I’m not going to let it happen again to find out.

Still later…

  • Something in the air.  Starting my third year living in Michigan, every August my eyes would swell up and stay that way for weeks.  No clue what it was.  I looked stoned and beaten, red eyes with hugely swollen lids.  I tried using warm teabags on them to reduce the swelling.  I’d read somewhere that this can help.  Oh no.  It did not help.  Instead, my eyes both developed massive bruising after the tea bags.  “Oh great!” my husband exclaimed “people are gonna think I hit you!”  Ah, Ex-husband the doctor…what a great bedside manner he had.  He kept laughing every time he saw me, “I’m sorry, you look like a raccoon.  No, seriously, I am really sorry.”
  • Can’t stand up, can’t sit down.  Around the time of the second year of the eye swelling, I had this very strange thing happen.  I don’t recall when it started – did I wake up with it?  I must have.  One day every single joint on me swelled up.  Joints I didn’t know I had hurt – you don’t think about those places where things connect if they aren’t things you have voluntary control over moving.  My wrists and fingers were so swollen that the usual skin folds/grooves were flat, tight red lines.  I couldn’t fully straighten or fully bend anything.  I had to shuffle hunched over with my hands and arms crabbed.  Into the car and the ER with Ex-husband the doctor.  At the hospital, they had no idea what the hell was going on.  “Some kind of serum sickness, maybe you got bit by a spider” was what one of my ex-husband’s residents proposed (ex was an attending at that point).  About five years later, the exact same thing happened to my sister.  I remember she was staying with me at the time and she had to sit and scoot up and down the stairs of my townhouse because she couldn’t bend her legs enough to walk up and down them.  Hers was the same as mine, quickly came on and then receded over a few days.
  • Itchy legs explained?  My ex-husband and I took the dog for a walk one winter day.  Just around the block, but that damned bitterly cold wind that starts in October and ends sometime between April and May was blasting us the whole way.  I was bundled up on top and wearing long heavy socks and boots.  But my upper legs, well, it was just a layer of denim between my skin and that wind.  I got home and it was like my legs were on fire – sort of like how they would get walking on the beach with my sister but much worse.  Itchy, but also red and hot.  “I think you have cold induced urticaria” my ex said, with some interest, and proceeded to lecture on how this is the same sort of mechanism that underlies cold induced asthma (which he sometimes experienced, being marginally asthmatic).  It was the same voice he used the time he remarked, early on in our dating, “my god you have superficial veins…” (to which I replied “gosh, you say the most romantic things” and batted my eyes dramatically).
  • Petechial in Chicago.  Went to a conference with my (then) new post-divorce boyfriend in Summer 2001.  I had a poster session at the conference, my first post graduate research presentation.  After, we walked all over the place.  I started getting crampy while we were out.  I noticed that in addition to what I assumed were the start of menstrual cramps, my legs felt heavy and like they were full of hot sand.  Leaden would be a good word for it.  Great, new endometriosis symptoms, I thought.  By the time we got back to the hotel, I could barely move my legs.  Got into the hotel room, and ran a bath.  As I was drying off, I noticed the most alarming purple/red spots appearing all up the insides of my thighs.  They were so heavy and so intense that I assumed it was something ON my skin, something in the water that had discolored me, not something in my body.  But after developing, they remained for quite a while….at least two weeks I think.  A blanket of fine dark pinpricks with tiny violet-red clouds around them…where they were densely packed the  margins of the “clouds” blurred together obscuring anything remotely skin colored.  It went away on its own, only to come back the next month when I was menstrual again, slightly less severe but still remarkable.  I saw the (horrible) GYN I had at the time and requested some tests.  She ordered a PT and PTT.  I was called several days later and told my test was “negative”.  We had a long chat, that office shrew and I, about how a continuous value as measured and reported in a situation like this should not be interpreted in a dichotomous manner.  “This isn’t a pregnancy test,” I told her.  When I was finally able to talk to the doc, she said that my PT and PTT were both totally normal, and she had no interest at all in pursuing the matter further.  My interpretation was that she was an OB and didn’t give much of a damn about anything that wasn’t immediately baby-related.  It didn’t happen again, so I didn’t pursue it either.

on my own

Anticipating that this week would be tough and I would not be up for much, when my husband’s siblings suggested a trip down to visit them this weekend to celebrate their birthday cluster (starts in mid-February and ends in mid-March), I had indicated I probably wouldn’t be up for it.  Husband has gone though, I don’t resent his wanting to see them.  And I don’t resent his going.  I do have some ambivalence about the siblings though, because I know my absence will not be seen for what it is and will instead be seen as some slight.  I’d like to think people don’t misperceive like this and that they don’t “keep score” but interactions with my own family, with his family, with my ex’s family, and with various friends informs my knowledge that it is otherwise.

On the “plus” side, well, sort of plus, I am correct.  Last night, I just sort of fell apart.  Systolic blood pressure in the mid to low 80s?  Check.  balloon animal gut any time I eat?  Check.  Burning sore roof of the mouth that looks bruised?  Check.  Swelling burning hands and feet?  Ringing ears and stabbing headaches?  “Swooning” even when I’m laying down?  Check, Check, and Check.

I got through the week, the busy week, but I am taxed.  Working through two days of migraines from the weather, sleeplessness, and stress took a lot out of me.  The stress comes from continuing staffing problems with a coworker who I am asked to effectively supervise but over whom I have no actual supervisory authority; an impromptu meeting with my boss yesterday to tell me that he was penalized in terms of his job security for advocating for an accommodation for me; and a handful of rotten encounters with various just plain old rotten people.  Did  I mention it was busy anyhow?  Just normal job busy.  But then there was all this crap on top of it and it made for busy + bullshit, which = all used up.

And so it is with chronic illness – my “wealth” of energy has been spent on things both necessary and unnecessary (bullshit), and therefore is not here for me now.

I wish there were a way to convey the validity of this experience to people who have the luxury of distance from it.  Knowing that I am going to be judged negatively makes staying in and nursing myself on this beautiful sunny Saturday more difficult than it already is.  If I were a less responsible person, I would go. Or I would at least go out and do something.  E.g., my nails could use a once over.  I could meet up with old friends who would want to go out to dinner or to a bar.  It is tempting.  But I know what it’s like to pass out in public, or to get acutely unwell and need to drive myself home in a nausea, pain, or scrambled head induced stupor, to stagger in and lay on the couch or the bed bargaining with my bastard-body, “Just don’t puke, don’t pass out, ride it out, it’ll be ok…shhhh…I’ll hold really still and it’ll stop….shhhhh….shhhhh”.  And I feel that if I know this is likely, it is completely irresponsible of me to fail to seek to avoid it.

Oh, and as much as it sucks to have this happen when I’m alone, the jury’s out on whether it may actually suck more to have it happen with an audience.  You want to think that people would step up and take care of you when something like that happens, but truly, as well intentioned as they may be (and that is sometimes questionable), my experience is that they usually fail to act or fail to appropriately act.  From my little brother reacting with embarrassment when I passed out in the plane seat next to him on a school trip to Europe, to a nurse friend leaving me sitting at a table alone while she called 911 when I passed out while out in a restaurant, to my most recent ex acting like a blood sugar noob when I had a bad hypoglycemic attack at a party (despite his being a carefully controlled insulin dependent diabetic for almost 20 years at that point) – I have found that a very large number of people cannot take care of someone who is acutely and (apparently) rather spectacularly ill.

color photo of a brown tabby cat sitting next to open sunny window and looking up at camera

can we go outside?

So I stay home, and try not to be bitter.  I’ll pay my bills.  I’ll eat my salty food and drink my gatorade and water.  I’ll watch stupid things on Netflix and Hulu, read, play solitaire, play with the cat, read some more, and maybe I’ll pull it together enough to make one trip out to do an errand – the preparation for which will be more like planning a 2 day road trip.  Pharmacy?  Nail salon?  Or (gasp) both!?

I know this sounds all deep dark and despairing.  It sort of is and sort of isn’t.  I see the deep dark despair there, and while I’m acknowledging it, I’m not exactly welcoming it in.  I’m here, it’s here, it’ll go away again and I’ll remain.  So it goes.

theme song

Busy time at work, bad outcomes with HR, too many doctors’ appointments this month, nausea every night, applying to other jobs and wondering if I can do it, knowing we have to move and not wanting to.  But I’m getting by.

too much, too late

Supervising millennials is…interesting. I can’t imagine how the pre-baby boomer generation would handle them.  Not well I think, so it’s probably a blessing these groups will not overlap much in the workforce.  As a member of gen X, I am familiar with and even (occasionally) guilty of overdisclosing at work.  But you know, the term TMI was coined rather recently and, I would argue, it serves a necessary and more frequent purpose for this newly minted set of workers.  E.g. calling your boss 4 hours after your shift was supposed to start to say you want to pick up your paycheck because you need it to pay for your medication, which you need because you are sick, which btw, is why you weren’t at work today.