Do you have any children?

The spouse of one of my co-workers asked me this last night.  It’s a bit of a loaded question, isn’t it?  I don’t fault her for it, it’s not like she dwelled on it when I said “no”.  But it is one of those things that makes me wonder how people in my position who had wanted kids must feel when it is asked.  It must be terrible.

My aunt, who is about 85, shared with me her own experiences with infertility way back in the 50s.  Backing up a bit, I should say that this is my father’s sister.  He has three.  None of them could have kids.  Between thyroid disease and/or endometriosis, they were trying to conceive in an era where I think the many different reasons for female fertility challenges were not at all well understood and where remedies were hard to come by.  I know that the first “test tube baby” was conceived within my lifetime.  It’s one of the first science news stories I remember being very aware of.  My paternal grandfather’s mother also struggled with “female problems”.   What started our discussion on this was that I participated in a genetic study on endometriosis.  They asked for an extensive family medical history and so I asked my aunt.  She was the eldest of the sibling set and was very aware of who had what. Once we had broken the silence on talking about it, she was able to share these anecdotes with me about her early adult life with this disease.  E.g., when she was first married, she told me, it didn’t take long before family and friends started calling her mother to ask why she hadn’t had kids or become pregnant yet.  Let that sink in.  You are a young but grown woman who is bright and who had wanted to continue her education beyond high school to become a teacher.  Your uptight Italian father said no, since he feels it is important for women to have babies and not to have jobs.  You wait, and finally you are married to your sweetheart, who has survived an extended stay in a Nazi prisoner camp and a bout of tuberculosis.   You are delighted that you and your beloved are together and married and you are excited about starting your family.  Months pass.  You start wondering what’s wrong, since you still are not showing signs of pregnancy.  You don’t really talk to anyone about it because people don’t do that back  then.  And then extended family and friends start calling YOUR MOM to ask about some very personal details of your life, your marriage, your intentions, your body.  Like there is something wrong with you, like you’re intentionally and stubbornly keeping yourself from conceiving.

Like my aunts, and their grandmother, I struggled with endometriosis from my adolescence.  I recall one particularly clueless doctor telling me that I probably would never be able to have kids.  My attitude then, and now, was “well good thing I don’t want any!”  And I didn’t, I truly never had.  As a young child, I had played with dolls but not baby dolls.  My dolls were projections of my conception of an adult me.  They had jobs and kitchens and cars.  They did not have families.  I remember playing dolls with the daughters of a family friend once, these girls had Barbie and Ken, and the play-time devolved into a screaming match between Barbie and Ken about who worked more and why they didn’t have time to take care of things around the home.  I recall Justine, the daughter closer to my age, bobbing Barbie up and down excitedly (the universal gesture for “the doll is talking”) and vocalizing Barbie’s increasing intolerance of Ken’s slothfulness.  “I work 100 hours a day, 8 days a week….” Barbie shrieked at one point to Ken, who was busy packing a bag and preparing a get away in the pink plastic sports car parked outside the Dream House.

I have had three surgeries for Endometriosis (02, 07, and 11), four if you count the scar tissue removal one this Spring.  I finally had had enough and said it’s time to get rid of the uterus.  This decision came after I’d been told that at my 07 surgery, there was evidence that the implants had worked their ways into the walls of my uterus.  Not the lining, the muscle tissue.  It was described as “enlarged and boggy”.  I referred to it as “old boggy” for years after.  In 11, I said goodbye to Old Boggy and had them take it out.  It has helped.  I remember researching the surgery in the months leading up to it, and finding a lot of chatter about the emotional impact of hysterectomy.  It irritated me for a while, mostly because I was like “god damn it, I want to know what HAPPENS.  Where do they put your ovaries?  What do they do with the ligaments and all that crap that used to hold your uterus in place?  I don’t give a crap about the loss of woman-hood.  Who the hell cares?  Old Boggy is not the seat of my gender identity!”  But thinking about my aunts, and thinking about friends I’ve known who really wanted a kid and struggled with conceiving or carrying a child made me realize that this probably is a big deal for a lot of women and the results of my internet searches were just reflecting that.

So I wonder, for those women, what it must be like to be at a party where two of the three married couples have young children who are doing all of the cute and/or annoying things that children do that draws adult attention, to be asked “do you have any children?”  It must suck.

Opus, or “you look angry”

Too many doc appointments this week.  Here’s how that ended up being the case.

In January, I saw Oral Medicine at one of the BATHs at the request of my primary care, who I had presented to several times with a mess of a mouth.  What it was is still really anyone’s guess.  I’ve blogged about it before (several times 1, 2, 3).  So in January, it was not active.  Come back when it’s active and we’ll biopsy it.  Actively messed up mouth coincided with free time to go back to the BATH in July, when I had that time off between jobs.  So off I went, got biopsied by the Oral Medicine Hair Band (the person who had originally seen me was on leave).  A call my first day at work with the results.  “Non specific inflammation, no thrush/candida”.  He says try some steroidal mouth rinse.  Ok, but I DO get thrush and I’m a little concerned about steroidal mouth rinse.  He tells me to only use the rinse when I’m symptomatic, and to take a fluconazole (200 MG which he called in) once a week when I’m rinsing.

In the meantime, I have pain after sex and pain after walking and pain pain and more pelvic pain…not as bad as in the Spring but bad enough.  So I call the GYN doc and tell him about it, and about the EDS diagnosis and say I’m wondering about a referral to the Pelvic Floor Dysfunction folks.  He is a little confused, not sure he gets it, says I should talk to my GYN surgeon.  He says he’d like to help but he really just doesn’t know anything about that or know who to refer to.  Oh and he notices I haven’t had a routine exam and pap smear in for-frickin-ever.  Wanting to play nice with the GYN (because I need him on my side) I schedule it for August 14th.

I start feeling palate pain that same week when I called the GYN, and so on August 3 I try the mouth rinse.  I take the fluconazole.  I do the mouth rinse two more times the next day.  The day after, I wake up with a ragingly sore throat that continues into Monday.  I call the Oral Medicine hair band doc back late Monday afternoon, get the office voicemail and leave a message summarizing the meds and the subsequent, continuing sore throat.  Monday ends.  No call.  I didn’t expect one Monday because I called so late.  Tuesday comes and goes.  No call back.  Wednesday, I call from work in the AM.  I’m in a lot of pain by then, my throat is killing.  I have a little white streaking and a patch on a tonsil that might just be phlegm, and my pharynx looks burned.  It is blistered.  I am told that they didn’t get my message.  I’m told that Dr. Hair Band is out of the country now and that no one (in my insurance plan) can see me until next week when Dr. Hair Band is back.  On August 16th.  I push and finally get the office staff to agree to ask someone to call me back.  Dr. Hair Band’s associate calls me back, tells me that although she can’t call in clotrimazole for me without seeing me, she can tell me to take the 200 MG dose of fluconazole EVERY DAY until I see Dr. Hair Band on the 16th.  Sweet mother of god, do you have something against my liver woman?  I want to yell into the phone.  But I have already expressed my displeasure with the office staff member over the missed message (“you called Monday?  Did you leave a message on the doctor’s voice mail?” “No, I left it on the main number’s voice mail”  “Well if you left it on the doctor’s voicemail that’s why no one called you back.  He’s out of the country”)  and my blood sugar’s bottoming out so I get off the phone, feeling totally fucked about. My throat is killing, I’m nearly out of clotrimazole, and so I start taking the fluconazole.

The sore throat lasts and lasts.  By the weekend, I’m starting to also feel crappy – “malaise” is the word for it – which sucks because it’s my husband’s birthday.  I push on, start the next work week, go to the GYN, who freaks out when he hears the dose of fluconazole.  “And they thought that was better than giving you clotrimazole troches?!?” he asked with no small amount of horror in his voice.  Yes.  I believe they are soon to be my former Oral Medicine doctors.

Then on to the Oral Medicine appointment two days later.  The Oral medicine appointment is for 2:00.  I get there, offer to pay my copay and am refused “you do that after” the office staff member tells me, then returns to her personal call and crossword puzzle (I am not kidding).  I wait 20 minutes.  I go up and ask how behind they are running since I had planned to go back to work after.  She bellows for someone.  Someone comes out, seems irritated by my question, then goes into a room for a second, comes back out and says “5 minutes?” to me, then adds “he didn’t really answer me”.

I wait about 5 minutes, then go in, give a history to the residents which includes the part about calling and not getting a return call, get a preliminary exam and then no shit I wait another half hour for the attending.  All totaled, it was an hour and 15 minutes before I saw the attending.  He breezed in, offered a lame and casual apology for “the delay”, then said “So tell me what happened” and I start to tell him about the physical stuff, the mouth rinse, etc.  He interrupts, says “No.  Tell me about the call.  I heard you called and no one returned your call”.  Ok, so I tell him about that and he starts to go down the same path “well if you left a message on MY voicemail…”  Oh holy cow.  Yes, I know.  And no, it wasn’t YOUR voicemail.

We then talk about my mouth.  Finally.  It’s not thrush. You were on fluconazole.  “What if it’s resistant?”  That’s rare.  He says I can just use the mouth rinse sparingly. I tell him I did use it sparingly.  He says “You seem angry” with a smirk on his face.  Maybe he’s one of those people who thinks he can smile disarmingly but what it came across as was smarmy and smirky.  “I’m not angry but I am upset.  I’d have preferred to have been seen when this was first happening, and I had to leave work to come here today and was hoping to go back.  But it’s been a very long time and I won’t be able to make it back now.  So I’m upset.”  “I didn’t know that” he says.

He offers magic mouthwash, which I have been mixing myself at home anyhow from left over (old) lidocaine, benadryl, and maalox.  “That would be great, thanks.”  He tells me that I can take the 200 MG of fluconazole for three or four days after I use the mouth rinse the next time.  I told him: I know you don’t think that it was the mouth rinse but I feel very much that this started as a consequence of using that so I won’t be using it again.  I would prefer to just treat the mouth stuff conservatively, with the anesthetic rather than try that again.

I get out to the front office and it’s a fucking zoo.  There’s a guy in a wheelchair on one side of the desk whose assistant and what looks like a med student are trying to hold something in his mouth to “stop the bleeding”.  There’s a hard of hearing elderly woman in the waiting room who is giving her entire life history to the staff member who has been delegated (with not a little hostility from the crossword puzzling, personal phone calling assistant at the desk) to give the woman her “new patient” paperwork.  “I’m not a new patient.  No, I’ve been coming to this hospital for 30 years!” the patient yells.  “What are you doing?” the Puzzler calls out to the other staff member.  “She’s trying to tell me something…” the staff member says.  “You’ll be there all day!  She has an assistant with her.  Have her help and get back over here!”

“Hi, is now a good time for me to pay that copay?” I ask, really and truly enjoying the mess The Puzzler has found herself in.  I’m pretty sure she’s the one who gave me the royal run around about the voicemail a week ago.  My day is fucked, I can’t go back to work now.  I may as well just stand there and add to the chaos that is that seriously effed up office.  “Oh I got a bill,” I say, digging in my massive tote bag, which I shove up on the counter, sending things rolling.  “Here….I guess I must not have paid last time.  Can I pay that now too?”

On the way home, I started feeling crappy again, with nausea and chills.  When I got home I checked my temp and it was 99.9.  Still feeling chills and crappy today so I called my primary care and saw him this AM.

Thank fucking god my primary care is not a dick.  After this week, my tolerance for medical malarkey was very slim.  He also didn’t think it was likely it was infectious, but he did not think it was nothing.  He did a culture, and said “‘I’m really suspecting the allergies.  Have you seen anyone about taking the metal out of your face?”  I told him that I’d mentioned this to Oral Medicine doc, who blew it off and told me that if my mouth mess was from allergies to my amalgam fillings, it would be only on my cheeks and gums, around the metals.  “He didn’t give a crap about the metal allergies, and I just haven’t had time to find a new dentist – I was trying to take a doctor break.”  We talk about dentists and the fillings, he tells me Palladium allergy and fillings is a big topic in dentistry these days.  I tell him that I think it’s like the lyme disease thing.  It’s gotten all controversial because there are people out there who have some ideas about mercury and fillings and as soon as I mention the fillings it’s like the dentist just hears ‘CRAZY’ and stops listening.  He says  “Lead with ‘I have a palladium allergy”.  He then runs off to research steroid allergies.  LOL.  I get a four page print out from him on it.  He asks about aspirin allergies, tells me it’s cross reactive with ibuprofen.  “You’re an opus,” he tells me.  I say “yeah, I noticed on my chart here it says ‘Volume two’.  Sorry,”  “No, I LIKE this stuff.  It’s interesting.  We’ll get it figured out.  It’s a team effort, and it’s good to have you on the team.”

He asks if I’ve ever taken Singulair, prescribes that, says to double up the Allegra, and take more benadryl at night – just for a while and see if it helps.  And get the metal out of your face.

And so that’s how I ended up seeing three doctors this week.

Self referral

I shudder at the thought.  It should be reasonable, but even trying to write about why the prospect bothers me is difficult.  Here’s the situation.

I have joint pain, lots of it.  In 2005 (I think) my left hip rather suddenly started hurting.  I had been on my feet all day, moving tables, chairs, setting up for a poster session at an undergrad research presentation event.  I often forget that part of the onset.  At some point, my leg felt “off”, a feeling I wasn’t unfamiliar with, that usually resolved if I shifted position or kind of shook it out.  By “off” I mean it felt like things mechanically weren’t right.  This time, the feeling grew until it felt like my hip was being pulled off my body – I tried to walk to get to my car and had to slow, slow, slow, and eventually stop and practically lay on a wall.  For months after that, it hurt horribly daily.  It eventually stopped.  What stopped it?  Massively reducing my activity.  It would flare up again if I did too much, too much walking, moving furniture around (even small stuff like a coffee table).

I have knee and ankle pain weekly.  That started with the Lyme Disease, although when I say “started”, what I mean is that the pain for no good reason started.  I always had pain after walking a lot, mall walking, city walking.  A day spent browsing around a city would leave my legs throbbing in pain but I just assumed everyone had this, that it was normal.   What started with the Lyme, and stayed, is having that pain despite doing little or no walking.  Rainy days = pain.  Weather change = pain.  Sleeping wrong = pain.  Stepping the wrong way = pain.

I have arm, wrist, and hand pain and tingling.  My job and my hobbies are killing my hands.  Typing, writing, photo and audio editing.  I keep saying I’m going to look into alternative mouse options but so far I can’t seem to find the time to check it out.  I did at least get a split keyboard at work and oh wow does that help.  I can’t handwrite anymore – I’m good for about one sentence before my hand and forearm cramp up and my usually sloppy writing becomes completely illegible.  A page worth will leave me needing a cool water soak after.  And when cooking, I am no longer allowed to cut veggies.  Too many trips to the ER in rapid succession from 2008 to 2009 for big ugly gashes.  I’ve cooked since I was a kid.  I did not have a problem handling a knife.

I have this thing which I think is best described as erythromelalgia in my hands and feet.  This started in about 2004 I think.  Again, post Lyme, but there is the confounding factor that since getting Lyme and the pain and fatigue that came and never really left, I had to reduce my activity level or be in too much pain to do things like go to work, go to school, feed myself, clean my home, you know, all those little pesky things that make a life.

For a while, I tried getting doctors to care about these things.  I’ve seen ortho for the hip and had 2 rounds of PT, the first of which was helpful but the second was vastly unhelpful – the PT was very “it’s your hip” specific, and treated it like it was an acute injury in an otherwise healthy person.  I’ve seen rheumatology for the arm and hands and swelling hot extremities (erthyromelalgia).  I gave up eventually because under even the best circumstances with the least doctor levied invalidation, what I got for my troubles was what Louis CK so aptly phrased as “you just do that now“.

And now there is the pelvic and sacral pain.  Let’s just for a moment consider that area.  While I have given up many formerly pleasant activities which make life fun, and even (some would say) worth living, I had not yet given up sex.  However, the prospect of enduring post-coital pain is a bit of a mood killer.  It’s simple aversion conditioning.  Sex = pain.  Makes sex less up there on my list of fun things to do.  That’s not to say I don’t, but I plan it out now.  “Hmmm, it’s Saturday and I’m not totally in the mood but if I want to have sex, I should do it today since if I do it Sunday, I will have to face Monday at work in the worst of the pain that I’ll have for the next 3 to 5 days.”

A long history of being turfed between GI and GYN for any complaint located between my diaphragm and my knees has taught me that diagnosing “pelvic/abdominal” pain in a woman is apparently one of the great mysteries of life.  Sort of like looking for the Loch Ness monster or Big Foot.  And I played that game for a while, when the symptoms seemed to be GI and/or GYN based.  But this is different – really it is.  It is like the hip pain but deep inside my trunk.  It radiates around my flank and into my back.  It travels down my leg to my knee, and if it gets really rocking, it can make my whole leg hurt like I’ve jumped off a wall that is a little too high.  And the sacrum.  Oh god.  It feels like it’s coming apart.  Just like the hip back so many years ago.  Let’s not forget there is this one other little spot of connective tissue in the pelvis that goes unnoticed unless there is a problem.  It’s called the pubic symphysis, and it’s a little tiny place where the front of your pelvic bones come together, and it can hurt like a mo-fo.  It seems to be the case that this pain comes from trauma, sports injuries, or pregnancy.  But for some people, no.  We “just do that”.

So.  Signs point to connective tissue issues.  And they fit so nicely with my other general symptoms (the POTs type stuff, the GI/motility stuff, the migraines, the fatigue).  And yet, who do I see for this?  Primary?  Well, it really is a bit outside his area.  Joint and shit?  Lady joints and shit?  Oh hell no.  He’d want to refer.  But who to.  Ortho will treat individual areas, in my experience, separately.  Mechanically.  Overly-reductionist.  Rheumatology doesn’t want anything to do with me because my autoantibodies are just not high enough for them to give a crap.

I am not certain it is “pelvic floor dysfunction” but what other name to give to chronic pain in the areas from my lower ribs to my thighs that is now affecting and affected by everything that strains it:  sex, voiding, walking, cleaning, carrying anything…even how how I sit or stand.   Do I self refer to the pelvic floor dysfunction group and say “hey, it may not be this but I think you guys should take a turn at it because everyone else is all out of ideas and well, it might be this”?  And how do I communicate that, initially?  at the outset?  Over the phone to the office staff?  Not likely.  Better would be a written referral from a doctor I see, but so far, I’m not having luck with that.  What would you do?

rainy days and hip pain

It was so hard to wake up today.  Usually, my brain is awake around 6:00, if not earlier, and it’s just my body that refuses to accept that it is time to get up.  But today I was just out.  “Does that at least mean you slept well last night?” my husband asked as I staggered around the living room this morning.  No, not really.   I had to get up to pee a lot.  And I remember being very disoriented while getting up to pee.  Stymied by the bedroom door.  Unsure which way to turn for the bathroom.  I have a theory – that my blood sugar bottomed out while I was sleeping.  Here’s my favorite quote on that:  “Nocturnal hypoglycemia seems to have no immediate detrimental effect on cognitive function; however, on the following day, mood and well-being may be adversely affected.”  So this morning, after my alarm went off for the third time and I found myself quite ready to not only stay in bed but return to a deep sleep, I grabbed some candy I keep in the nightstand.  Got up to an ok blood sugar, 91 by the higher meter’s reading.  My not very well controlled tests with the meters suggest the higher meter is a touch high and the lower meter is rather low.  So probably my sugar was somewhere in the mid 80s.  80s isn’t bad for a fasting blood sugar.  It’s a little odd for someone who just ate three pieces of candy.

Yesterday, I had an appointment with my gynecologist.  He was not really convinced that my pelvic/abdomen pain was anything, mostly based on his hitting the bad spot on the external exam then failing to hit it exactly again.  “See, now it’s gone.  I might have been gas and I pushed it up.”  “You didn’t really push the same way the second time” I told him.  Whatever.  He’s not a bad sort, he’s just way out of his wheelhouse on things relating to joints, tendons, and ligaments.  Other than that, I didn’t have any pain during the exam.

But after getting home, the inside of my left leg started hurting bad.  And this AM, it’s the left leg and the left hip.  And it is some bad, hard to sit, walk, or stand pain.  And today is going to be tough.  It’s stormy, the weather is changing dramatically, which makes the pain worse and heightens the likelihood of a migraine.

So it looks like if I think I need a work up for pelvic/abdomen connective tissue issues, I need to find it myself.  Otherwise, I can look forward to more GI saying it’s not GI, it’s probably GYN.  And GYN saying it’s not GYN, it’s probably GI.  Turf, turf, turf.  At least the GYN isn’t a total turf queen.  He does follow up, he wants you to let him know how things turn out.  E.g., he called me last night after hours to say that he had seen my mammo and boob ultrasound was scheduled for over a month out.  “Was that for your convenience or was that the soonest they would do it?”  No, it was me.  I wanted an appointment later in the day (and yes, I know, I have a new lump in my boob.  But I have cystic boobs, I’ve had a mammo and U/S for them once before and it was a cyst (different spot).  And I’m sort of all filled up on dealing with the medical crap that makes it hard to get through the day, so I made a judgement call and decided that this can wait a few weeks).  And that he had also checked on my recent thyroid ultrasound and indeed there are some nodules so he wanted to know if I was seeing anyone for that, was it going to be followed up on?  Aww.  This is why I don’t want to fire this guy even though he demoted my chronic problematic pelvic pain to “gas”.

I think before I go for another GYN appointment, I’m going to look into some way to brace my hips when I put my legs up in the stirrups.  I believe the pain is from my leg lolling out too far to the side during the exam.  I need something to stop that from happening, because god knows my joints aren’t going to stop it on their own.  Any suggestions are welcome.

Update:  a google search on positioning for terms including pelvic exam, lithotomy position, hip stabilization, arthritis did not give me jack all.  Just med students whining about being thrown out of the room during exams (and sounding like the sort of person who should be thrown out of  the room during a pelvic exam), myriad random crap, and a few vague references to patients with scoliosis and arthritis needing alternate positioning like laying on their side with the upper leg supported on the clinician’s shoulder or held by an assistant.  You have GOT to be kidding me.  I guess it really is time to find some good PT folks around here.  Not gym teachers in clinical clothes, but actual real physical medicine and rehab folks who deal with actual sick people (and not just baby boomers who overdid it in spinning class).


It’s coming.  I’m nearly out of the short supply of pantoprazole the covering GI doc wrote for me after I was given a half script the last time I saw my GI doc.  I truly dislike the doctor finding process.  There should be an interview stage, where you can meet with them and ask them questions to see if you will be a good fit.  It would save everyone time and I’m fairly certain in the long term save money as well.  Changing docs means repeated procedures, tests, etc.  I can’t tell you how many times this GI doc has re-ordered tests my primary already did.  Usually, I skip them and just tell her to get those results.  Maybe this is part of my “difficult patient” charm, but I see no reason for me to have two thyroid panels within a month of each other just because one doctor doesn’t want to take the time to get and look at another doctor’s results.  Especially not when the ordering doctor isn’t even going to be the one to have to go and get the previous results.  That’s up to the patient.  But it’s dispreferred and I think it has to do more with wanting to be able to quickly look in one (electronic) place for the results than anything having to do with good medicine.

I may (and I say this with some significant reservations) be looking into a pelvic floor dysfunction group – and those groups have GI docs.  Either BATH 1 or BATH 2…not sure which.  BATH 1 is closer, they seem to have a less surgery-centric approach, and they at least mention dysfunction of types other than cystocele and uterine prolapse.  BATH 2 is where my GYN surgeon and gynecologist are.  Both claim to take a multidisciplinary approach, but when you look at their medical staff, BATH 1 has GI, colorectal surgeons, and PT where BATH 2 lists two urogynecological surgeons.

I’m reminded of my naive question at the nurses’ station waaaaay back when I was a wee little newbie worker.  My first “real job” was as a unit secretary on an inpatient surgical unit (the kind of unit that has been changed to outpatient/ambulatory care now that patients are hustled out post op without waiting for the all important eating, drinking, and voiding requirements).  I wondered out loud why so many of our patients were on the GYN services.  The nurses shook their heads at each other, then explained to me that for “female problems”, most of the treatments are surgical.

We had a fair number of GI patients too.  Which brings me back to my main point.  Finding a new GI doc.  Ideally, I want someone who doesn’t think “functional” disorder means uninteresting and not worth her time.  I want someone who sees a diagnosis of a functional disorder as a hypothesis which she is willing to revise or revisit should new evidence – even evidence from systems other than my stomach or gut – present itself.  And I want someone who thinks of ALL of me – who wonders about the sores in my mouth as much as she thinks about the motion of my intestines.  Someone who cares about my nutritional status, someone who recognizes and incorporates into diagnosis, treatment, and general approach that I have some sort of screwy systemic thing going on which may be connective tissue based, may be autonomic nervous system base, or may be both, and which I’ve had all of my life.

Tomorrow I see my gynecologist for a routine check up and we will talk about pelvic floor dysfunction referrals.  I don’t need a referral, but I feel better about having one.  I worry that self referral is another sign to doctors that you’re a difficult and unstable person/patient.

But that’s tomorrow.  Today, I need to call the current GI to ask for a new script.  Bracing myself for this.  I’m guessing it’s not going to be easy since I already called twice about it when I first noticed the screw up and they have yet to resolve it.  This is  the “no, seriously, she needs to deal with this” call.  I hate those calls.

Day one

Started the new job.  And I have an office!  With my own temperature control.  OMG I am so happy.  Now I just need to get some better lighting (florescent and migraine don’t mix) and a couch-type thing for when I’m hypotensive and I’ll be all set.  Woo!  Day one was good but only after my gut decided to be a total bastard in the AM.  That damned RLQ pain was back, and bad.  I am starting to wonder if it is muscle/tendon/ligament pain.  The last two nights, I’ve tested that theory by taking a (half of a) zanaflex.  And so far, it’s been at bay.  Hmmmm.  Interesting.  Another interesting point, the bad pain started after I hurt my hip getting out of my car.  Not immediately after, but then I don’t always hurt right away after over extending a joint.  I’m wondering if there is some pelvic floor mischief going on.  I keep saying I’m going to look into getting a consult for it but with the new job, I keep running out of time.  I was planning on calling the GYN to discuss it and to discuss a referral.  There’s supposed to be a good clinic for this (along with a nifty downloadable protocol/standard of care for assessment and treatment) at one of the BATH’s, the one the GYN is affiliated with.  Ah, another reason why I think it is skeleto-muscular….it responds to NSAIDs.  At least for now.

But work.  Work is good so far.  I know what I’m doing, I feel like I have the skills to kick ass at this job.  And they are actually taking the time to train me and orient me, more than had been done at my last job.  Also, the office technically is an accommodation.  One that I asked for only two weeks before starting, and which they processed and granted within 5 days of getting my doctor’s letter.  How’s that for good?  It will be nice to have a refuge for when I’m feeling bad but need to stay at work.  If anyone has any suggestions on good reclineable but relatively inexpensive furniture, send them my way.  I am thinking of one of those sleeper chair things.  Saw some online at Target, showed my husband, who said “we can do better than that…”  🙂

Ok, well off to get ready for work.  Don’t want to be too late my first week on the job!

what makes a man Mr. Lebowski?

I’m reminded of this conversation between the “big” Lebowski and the Dude from the Coen brothers’ right now.  What’s on my mind is what sort of person goes into what sort of medicine.  I think most of us know that the claim of “I want to be a doctor!” is driven by many factors.  They are not factors I can personally relate to, but I cohabitated with and was married to one for a bit during his residency and the first few years of his career as an attending so I have a little bit of a glimpse into the world of docs in training at least.  A little.  And I realize that it is limited by the specialty.  Which brings us to the set up.  Not only is there some set of causes which end in the drive to be a doctor, there are factors which also determine what specialty or type of doctor they want to be.  This lend themselves to stereotypes.  Ortho docs are jocks.  Internal medicine = nerd.  Surgeons have a god complex.  ER/Trauma doctors are adrenaline junkies.

While you’d be an idiot to rely on the stereotypes as universals, is there a grain of truth to them?  Clearly there will be certain specialty specific cultures, just like there are cultures that go with any profession.  And what I’m wondering right now is what that is for gastroenterology.  As a patient, no field has given me more trouble than GI.  Admittedly, I have a sampling bias.  I’ve had GI problems my whole life.  And I did have a good GI doctor as a kid, but I had the misfortune to need to see others in his practice from time to time and let me tell you, those people were class A dicks.  GYN is a close second – reflecting on my hospitalization in 1992 for “pelvic pain” and loss of consciousness highlights an interaction of the two (in the context of 20 year old me, still a lot of rough edges back then).  I was in on a weekend, via ambulance to the ER, after a horrible episode in my dorm.  “Why is the top number getting higher and the bottom number getting lower?” one of the student emergency response team members asked while checking my blood pressure and waiting for the real responders to arrive.  “Because I’m going into fucking shock” I said, then leaned over the side of the bed and puked into a trashcan.  At the hospital, I was bounced back and forth between GI and GYN like a ping pong ball.  On the unit, no one wrote orders for pain meds, my regular meds, or food.  I remember crying while talking to the nurse, who reported that the covering GI doc thought this would be a good time to take a “vacation” from Zantac to see how I fared without it.  I was told there was “free fluid” on the pelvic ultrasound, discharged and told to follow up with GYN.  Which I did and which was a disaster.  I now know to carefully choose my GYNs.  Back then, I was just going to the guy my mother saw.  But with GI, it doesn’t seem to matter how carefully I screen them.  It’s like the old black and white sock drawer game*, except in this drawer, I am starting to think all the socks are the same color.

And so I’m starting to wonder if maybe there is something about the specialty, about gastroenterology that selects for jerks.

My current GI is on her way out.  My last appointment, she took quite a bit of time with me.  That time was to tell me to change my diet to an IBS diet – she didn’t have a suggestion but she promised she would find one, kudos on that I suppose, except I’ve tried the fibery diets and found them to do nothing except accelerate the symptoms; work out – and when I said I have a hard time with activity because of the fatigue, joint pain, and heat intolerance, said “work out in an air conditioned gym” and when I reminded her of the joint pain, said “join a gym with a pool”.  I said “sure, if I want to poop myself in the pool” – for a GI doc, she’s a bit squeamish on the poop references.  I didn’t know it at the time, but I found out later that she called in a refill for protonix that was half what I take – not listening, not reading the chart, or not caring?  She then left for vacation and I was left to try to find a refill for my meds, which cost me a $40 copay per month, and which I spent $80 on to fill for the last month because of her oversight.  Apparently money is no object to her, as she made clear by the “join a gym” comment.  Um, I’m sorry, I make less than $40k a year, have massive student loan debt, and just had to move AGAIN.  I don’t have the fucking money for a gym, let alone one with a pool, and even if I did, there isn’t one near me.  If she really felt strongly that this was the key, why not offer me some help in getting a PT consult and make suggestions for ones that offer aquatherapy?  That I keep a blog came up when we were talking about my recent GI symptom history, I mentioned something like re-reading my blog I noticed my symptoms actually had picked up in January.  She looked perplexed.  I explained “I write an anonymous blog about my health problems and experiences”.  Then she looked like I’d said a dirty word.  Oh dear.  Well, she’s one of those.  The genetics med guy I saw was actually very happy to hear I wrote a blog and had a small community of people I could turn to for support.  “We all have sort of complex or mystery illnesses, so we share a lot of the same challenges” I told him.  And speaking of the genetics guy, at my GI appointment I mentioned I had been diagnosed with EDS/hypermobility disorder since my last appointment with her and said I’d been told it could have GI manifestations.  “I don’t think so” she said and looked it up on the computer.  Based on one broad couple of second search, she said “no”, except for something she said by long special name, and I said “something vascular?” because it had angio in it.  Again, she made the face.  I’m sure she took this as evidence that I know too much, which is of course totally illegitimizing if you’re a patient.  You’re not supposed to know what “angio” means!  You must be a hypochondriac, even though you’ve lost over 10 pounds since the last time I saw you…. (oh they have ways to explain that too.  I had a GI doctor who grilled me on eating disorder questions when I had lost 35 pounds at the start of all this, then at a follow up appointment his staff suggested I was using laxatives).
Just to show you what my soon to be ex-GI doctor missed in her 3 second search, here are some highlights:

So, I had resigned myself to her being what I call a vending machine doctor, i.e. one who writes my scripts and does little more than that.  But it seems she can’t even get that right.  I left messages about the script, which a resident called in while my doc was on vacation (after just having come back from a quite lengthy conference) and which has no more refills after today.  No call back.  She should be back from vacation.  Maybe she took a post vacation vacation.  If I had to guess what makes someone choose GI, I’m leaning towards money.  I did a little research, it’s one of the better paid specialties behind things like spinal surgeon.  What makes a GI doctor?  The ability to deal with poop and a desire to make some serious money for writing scripts for motility drugs and PPIs.

*Sock drawer puzzle:  Cathy has six pairs of black socks and six pairs of white socks in her drawer.  In complete darkness, and without looking, how many socks must she take from the drawer in order to be sure to get a pair that match?


My therapist asked me how I felt about having a diagnosis.  The diagnosis being Ehlers-Danlos Type III, a clinical diagnosis made by a genetic medicine specialist.  Blood work for EDS IV is pending.

Although the list of symptoms/presentation reads like a list of shit that’s wrong with me, I find that I distrust the diagnosis.  Some of this is because I know it will be questioned by many, many doctors, as all clinical diagnoses are.  “Well, how do you KNOW you had Lyme Disease?  I see your blood work here and it didn’t meet the criteria…”  For that one, I don’t bother arguing with them about how they seem to be thinking of surveillance criteria, which the CDC states are specifically “not intended to be used in clinical diagnosis” (or sole basis for diagnosis).  I just show them the EM rash picture and they say “Oh” and shut the hell up.  EDS Type III does not have a reliable test.  It’s “picture” is a mosaic of mostly “subjective” symptoms.  I.e., it is readily invalidated by any doctor choosing to do so.  And they do choose to do so with great frequency.  I consider much of that to be the result of a misapplication of the scientific method by people who are either inherently intellectually lazy or whose intellectual curiosity and excursions have been effectively beaten out of them by years of social reward for unquestioning conformity to authority and punishment for independent thinking (too often seen as feckless, unreimbursable meandering in the context of our education and health care systems).  Oh also there is sort of a tendency towards pissing matches among competitive people and my own experience working with, living with, and married to health care providers suggests that competitive types are over-represented in medicine.  It’s hard to make it through pre-med, med school, and residency if you do not have a strong competitive streak.

So all that said, while it is nice to have a name for that illness…the next time I have to fill out health care accommodation forms, for example, I will have a succinct and rather all encompassing diagnosis…I find I am less than enthusiastic about disclosing this diagnosis to other health care providers.  Like my GYN surgeon, for example.

I mention him because I am about to be cut up.  Well, rather cut into.  Now, I believe that more imaging would have been a good idea.  Perhaps a urology or general surgery consult.  But my providers are of the mind that if it’s not something that the morons who read my CT in the ER saw, then it’s not imageable (really I just can’t trust radiologists who read the CT of a woman who’s had a hysterectomy and bilateral salpingectomy as “the uterus and both adnexal regions are normal…”) and that if GI doesn’t want it, then I should follow up with the GYN surgeons.  And the GYN surgeons, being surgeons, are just like “hey, well it might be adhesions.  We can cut into you and look.”  Because an exploratory lap is not a big deal for them.  It’s like a walk in the park.

Initially, they offered next week and the very end of May.  I took the very end of May because at the time of the consult appointment, I was not in pain and had not had it in a few days.  I tend to have a ridiculously optimistic outlook on this shit, despite all my apparent cynicism.  No pain for four days?  Well then clearly it has resolved!  Stupid me, it came back on Wednesday night.  A little gnawing pain, oh maybe it will go away.  I’ll take half a pain pill.  Then a few hours later another half because it’s back.  Then the next morning, I wake up pain free and think “woo hoo!” only to shower for work, go to empty my bladder and have lancing LRQ pain that felt like I had been run through with a serrated knife.  Ok.  So take half a pain pill.  Nope, pain still there.  Take the other half.  Pain still there and escalating.  Call in to work, take another pain pill, squash myself up on the couch in a cushion cocoon, cry a little bit, talk to my husband who is concerned and stressed about moving, surgery, timing, etc.  And then call GYN surg back, still crying and say “Um, I’m really sorry to have to ask but do you think you can still do next week?  If I wait until the end of May, I’m going to end up using all my leave time from this pain.”

And so pre-op appointment today, surgery Monday, EDS-III possibly making recovery longer than the one the surgeon is going to recommend (they seem to assume all women will be back running marathons and horseback riding in one week after a lap).  I have more forms to fill out, little time to do it, and a surgeon to convince of the need for at least three weeks recovery.

While I have the optimism I spoke of earlier, paradoxically, I have a tendency to distrust that people will do the “right” thing when it comes to making my life more or less crappy.  I need to get over that.  Ultimately it’s about not wanting to have to push when I feel like the wrong thing is being done, or the right thing is not being done.  It’s about not wanting to be seen as pushy because pushy people are a pain in the ass and pain in the ass people are bad patients who invite invalidation, disregard, and maltreatment.  But not pushing gets you left in the dirt too.  So as always, I struggle to find a balance.


It is unfortunate that often medical care leaves something to be desired.  This may not be everyone’s experience, but ask anyone with a chronic medical condition – especially someone with one of those difficult to diagnose things (yes, I’m talking about the truly weird ones but also stuff like MS or Lupus) – and you will hear at least one story of health care hijinx that will make your hair stand on end.

This Monday evening was not the worst treatment I’ve received in an ER.  No, that would be the time I passed out at home, had my (now ex) boyfriend pull me up by my arms while I was stiff on the floor after hitting my head off the wall, door, and dresser, and went in only to be treated like I was a drunk kid and not a grown up grad student who had stayed up too late studying, got dehydrated, hypoglycemic, and hypotensive all at once.

This Monday evening was the one after the worst one.  That is to say, it was bad and I have a history of bad, which conditions the response to subsequent bad.  Oh also, I was in the worst pain of my life.  I have only had pain like this immediately post-operatively and that pain was handled with PCA narcotics.  This pain, well, this pain was not from surgery.  It just came upon me.  And that is scary as hell.  This pain was so scary that I did go to the local ER despite really deeply not wanting to, and I did ask for narcotics despite really truly not liking them because they drop my BP lower than is remotely ok.  And I did question the doctor when he came in and declared that everything was normal on my CT, he’d ruled out diverticulitis, and that was the end of the diagnostic path.  “Um, so you saw my kidneys and everything and that all looked ok, right?”   “Oh, well, no, not with the contrast…that would make it hard for them to see that.  I mean, they might but it’s not likely.  We’d have to do an ultrasound for that and they don’t open for several hours.”

And it was at this point that I stopped being the nice, accommodating patient who didn’t freak out and demand a supervisor when I was literally mowed down by a moving too fast triage nurse in the waiting room and who didn’t demand that I get a nurse who wasn’t in LABOR (yes, you read  that right, my nurse was very very pregnant and was having visible difficulty even moving around herself).  I didn’t get surly when the doctor denied me IV fluids, despite a BP reading somewhere around 82/37.  No, I was committed to being a cooperative and good patient who was taking a team approach to this, my having to come to the ER to make sure I didn’t have a kidney stone, a rupturing something or another, or a dissecting aneurysm.  Because yes, the pain was that bad.  But when the doctor told me that he supposed they could do an ultrasound and a pelvic exam “to be complete”, then turned on his heel and stalked out of my room without me knowing if that meant “yes, I think I should do a pelvic exam and an ultrasound” or “I neither want to do nor think we need to do either of these but you clearly are being a pain in my ass so I will order them to humor you….and boy are you going to pay when  I do that pelvic exam*…” – I didn’t handle this well at all.  Oh did I mention I was drugged to the gills on narcotics, hypotensive, and probably hypoglycemic at this point?

Long story short, I’m making a complaint to the state department of public health about the hospital, to the state board about the doctor, and to the hospital.  I doubt the latter two will result in much.  The hospital one might.  We’ll see.  In the meantime, I saw my primary care, who recommended I make a formal complaint with the state.  He also noted that on my CT scan report, which the ER doctor said was “perfectly normal” and used as a large part of his basis for declaring me undiagnosable and therefore no longer worth treating, they had noted my uterus was normal.  That is very reassuring, especially since I had a hysterectomy.  On the plus side, I did get to listen as my primary care doctor called the radiology department and questioned this.  It was good to feel like someone was advocating for me.

Well, off to shower while gripping the wall so I don’t fall over.  My BP’s still shit.  71/55 last night.  I blame the narcotics, oh and the dehydration.   Then it’s off to the lab where they will have a horrible time getting a vein since the ER blew the good one with the IV port they put in.  Then off to the Neurologist to find out how effed up my hand is.  I will be mentioning the ER experience to him too.  I want the word out about this doctor.

* = yes, this does happen.  I’ve been a victim of it more than once, and at the ripe old age of 40 and as a sexual abuse survivor I simply refuse to subject myself to it again.  If a doctor says “I really think you need a pelvic exam” then that is one thing.  But if he is putting it out there “just to be complete”, that says to me that he does not want to do this and I am not going to have a non-specialist put his hands up all up in my privates “just to be complete”/a.k.a. “just to stop you from complaining”.

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.