neuro today, gone tomorrow

I saw the new neurologist yesterday.  I saw him once before, this is someone who was trained in autonomic function and who has opened one of the only autonomic function labs at a hospital in my area.  Yesterday’s appointment was a follow up to talk about blood test results (negative) and where to go from here.  Oh and to let me know that he’s taking a leave for at least a year because his mother is sick.

Crap.

I liked him.

This is the second neurologist I’ve had since moving back to Big Historic City in 2009 who has left his practice.  He’s trying to do it right.  He says that the practice is going to try to find someone with autonomic dysfunction training to replace him and that he’ll be here until the end of April, asked me to check in by phone or email before then.

So what’s new from the appointment?  Other than “Good bye new neurologist?”  My bloodwork was negative for Antiganglionic acetycholine receptor antibodies and antineuronal antibodies.  That’s good, it means it’s unlikely that it’s cancer and less likely that it’s autoimmune autonomic ganglionopathy.  Then what is still on the table, Mr. Patient asked my soon to be former neurologist.  The most likely is the Ehlers-Danlos, other than that, there’s also mitochondrial disease – it’s hard to diagnose and not very treatable.  Well, better the devil I know, so I’m going with Ehlers-Danlos.

One interesting thing that did come of this appointment.  Sleep.  I don’t sleep well anymore, had a sleep study and I saw it as relatively useless since it just said what I knew going into it:  I don’t sleep well. I fall asleep but I wake up a lot, so much that it basically turns my night into a series of small naps rather than good, restful, sleep.  My soon to be former neuro said that he’d been trying to get the results of my sleep study but failing.  “Oh I can get you those” I say.  “They recommended a follow up study with a CPAP because I guess they say I might have upper airway resistance syndrome….whatever, I just wake up every night in the middle of the night drenched in sweat.  I doubt it’s gonna help that.”  Turns out that I am very wrong about this.  I should have realized, I don’t sweat.  Unless I’m passing out.  That should’ve been a clue that the waking up in sweat was something other than being overheated.  My soon to be former neurologist explained (and I won’t do it justice here, so pardon my paraphrasing):  when you have something like sleep apnea or upper airway resistance – they’re really kind of the same thing, just a little difference in the mechanism and severity – it can activate a sympathetic response (hence the sweating).  There’s also evidence that it can contribute to the development of cardiac arrhythmia.  Hands up, who just had two weeks of intense palpitations and a racing heart rate for no good reason?  Oooh, oooh, me!  I did.

Ok, to sum up, what he’s telling me is that the waking up drenched in sweat is probably caused by the airway obstruction rather than in addition to (which is what I thought), and that this potentially has much further reaching consequences than a bad night’s sleep.  I’ve done a bit of reading since the appointment, and it sounds like it’s a sort of “chicken or the egg” thing with regard to autonomic function too.  I.e. bad one makes for bad other, although which one comes first is up for grabs.  But maybe fixing the sleep could help with some of the autonomic function.  Gosh that’d be swell.

Now, I just need to get my ass into the sleep lab in the next week or two and maybe this will all have been worth something.

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demystifying

I’ve decided that when I talk to healthy people about my illness, I’m going to start using MS as an analogy.  This is because most people have never heard of dysautonomia or Ehlers-Danlos, but they have heard of MS.  There are TV shows and movies with people who have MS.  They may even have a friend of a friend of a cousin who has it.

This is not scientifically sound at all.  But then human cognition isn’t really rational.  We like to think it is, but it’s not.  We are subject to many logical fallacies in our thinking, and have to train ourselves NOT to think like that.  I believe that this tendency is most apparent in our social thinking, and I suspect it is facilitated by if not exactly because we don’t tend to think about our social thinking.  How we “feel” about people is how we feel, not how we think.  We might sometimes use cognitive words to describe the states and decisions we make about people, but how much more common is it to discuss those in terms of feelings?

So when you’ve decided that it’s time to disclose your illness, you are left with the daunting task of breaking through ignorance and I think that one tool that can help is analogy – specifically, linking the disease to something that is familiar.  My hypothesis is that the more familiar a known disease entity is, it is more accepted it will be as valid.  Hence, “It’s like MS…” with the caveat of “except it’s specific to the part of my nervous system that controls my blood pressure, heart rate, sleeping, and eating. So I get dizzy and faint when I stand up for a while, I get really tired from doing very little, and there are a lot of things I can’t eat anymore.”  I don’t need to include “going to the bathroom” and “having sex” because really, they just don’t need to know that.  Well, the bathroom thing can be relevant if you’re trying to explain to a supervisor why you need frequent breaks or an altered work schedule, but I’m talking more about the less formal disclosures to coworkers who otherwise have no basis of understanding why you can’t come to “super fun lunch time” and think you’re just being snobby.

“you look hypermobile…”

This is what the physiatrist said to me yesterday in her office.  Oh how nice to have someone not question this because I no longer can do all my bendy things without hurting later.  Even the easy guided motions we did during the exam made me hurt about a half hour later.

“People like you, they don’t usually dislocate all the time as much as they sublux.  Subluxing is like a partial dislocation” she told me, moving my arm into a ridiculous position behind my back while checking my range of motion.  “Oh boy, yeah, look at that…you’re really flexible.”

The disappointing thing was that she had been saying PT with weight training and I was like “!”, but that was BEFORE she examined me.  Specifically, it was before she got to my hips and sacrum.  “This is….did you know your left hip is considerably higher than your right?” she asked.  “No, but I’m not surprised to hear it,” I told her.  “When I’m symptomatic, there is a lot of clicking and popping going on back there.”

As we were wrapping up the exam, she said “I don’t think PT would be good right now.  Until that’s fixed, it’ll actually just make things worse.” She has a chiropractor that they use, she said he is really good and doesn’t rack up the extra visits.  Ok, well I’ll give it a shot.  If it’ll have some promise at fixing the shockingly intense and enduring pain I get from things like walking or going over a bump in the car, I’m game.  I can’t imagine that this is a good thing, to have your hip all bent out of place.  Can’t imagine it’s good for your hips, pelvis, back, etc.  You get the picture.  She even drew me a picture, showing me how she thinks my hip is rotated.  Well now.  How come no one mentioned this before?  She also strongly recommended I start taking melatonin and magnesium supplements.  She says they’ll help with the pain sensitivity, but for me, honestly, better sleep would help with a lot of things.  When I don’t get enough sleep, I am spacey, and when I’m spacey, I move badly – then I hurt myself.  I also identified sleep deprivation as a significant migraine trigger for me many years ago, even back before I had them all the damned time.  Magnesium’s supposed to help with migraines too, so we’ll see.

Other doctor stuff this week…

I finally had my appointment with Neuro #3.  It went pretty well.  I’m finally (!) getting that ganglionic acetylcholine receptor antibody test I’ve been asking about for 6 months.  He’s the only person who has said he’d like to rule out what I would like to rule out (autoimmune autonomic ganglinopathy).  It can take months to get back, only two places in the country do it (Mayo is one, I think I knew this from my research, they had a really nice protocol for testing).  We talked about midodrine for the POTS, he thinks it might help my gut if I got my POTS under control.  Hm.  Maybe.  Mr. Patient was there with the magical ID badge too.  Mr. Patient asked “And would you just recommend treatment to her primary care or would you prescribe it yourself?”  Neuro #3 said “Oh no, I’d follow her.  And I’d want to follow you, I wouldn’t just prescribe.”  Good.  Finally a specialist who isn’t like “ok I did my thing now fuck off!”

My cousin, who is not related by blood but should be, had asked me the day I saw Neuro #2 back in September if I could recommend a good primary care because she was done wit hers.  I gave her my doc’s contact info.  Texted with her last night and she says he was great.  She also says he agrees that we must be blood relatives somehow, because not only do we sort of look alike and act alike, but we also have crazily similar medical stuff.  I’m glad that I could connect her to my primary care.  He doesn’t have all the answers but he’s smart and caring and I think he’s exactly who people like us need.  First on the list, he’s sending her to the geneticist I saw in 2012 after serend-hip-itously “subluxing” my hip at a visit with my primary care.

So that was my two days of doctor appointments this week.  Back to the office today, where I am scheduled to meet with HR to discuss the locking of the accessible entrance to my work building.  I’m not sure it’ll make a difference, but I am sure doing nothing will not.  So off I go, to charge another windmill!

23 and me and them

I got a “23 and me” kit for my birthday from my husband, the sweet man.  He got one for him too.  For me, it’s a chance to find out a little more about my ancestry, since my mother was adopted and although she found her birth mother when I was a teen, her birth mother is not reliable on matters pertaining to her birth father.  My mother contacted her birth mother A. shortly before A. was about to move to the Southwest.  My mother went to see A. at some big family get together, she went alone.  I don’t recall whether there was discussion about any of us coming.  She came home glowing, with a long rope of a pearl necklace in a leather bag and a black and white picture of two distant looking people in long coats at a beach wall.  There were dramatic stories of how she was given the necklace by A., my mother dramatizes everything.  And there was the story of the picture, which was A. and the man A. said was my mother’s father, Mr. Coffee.  From Ireland.  “Mr. Coffee?  Are you kidding?  And also, “We’re fucking Irish?”

We’d gone through early school years in an Irish-heavy area.  Each St. Patrick’s day, it was a tradition in my elementary school to hang up construction paper shamrocks with the kids names, but with an “O'” put in front of the last name.  There was a sizeable number of “O’Italiano” names up there, mine being one of them, along with the “O’McGowan”s.  Sure, we knew that our grandma on our dad’s side had an Irish dad, but in a city where kids whose claim to being Irish came with parents with brogues, siblings back in Ireland, and weekly step dancing lessons, having a granny who is half Irish barely counts.  Plus, the Italian really just kind of overwhelms when you’re from a half Italian family, as my dad was.  So hearing in adolescence that our mother’s father was also not just half Irish but “Straight off the boat (and straight back on again apparently)” Irish was a strange counterpoint to all those childhood years of being “not Irish” when being Irish was really important.

But then the years went by and A. got older and stranger.  Not too many years ago, A. saw my brother at a visit.  During a phone call with my mother shortly after the visit, she said “You know, looking at (your son) now that he’s grown up, I’m not so sure Mr. Coffee was your father, because (your son) looks just like that guy from the party, you know, what’s his name, Chico’s friend….”

So this is a chance to find out.  Is it Mr. Coffee or is it “Chico’s friend”?  Not that this will say definitively, but if it’s Mr. Coffee, then presumably Western European  is going to represent strongly since the rest of my family tree is relatively well known, although A. herself is something of a mystery, one side traces back to Mayflower days but there is one reference to a “french canadian” great grand something and where I grew up “french canadian” was also what old fashioned, up tight WASPy people said when their WASPy New England family bloodline held some Native American.

And speaking of surprises…the second very special specialist was not bad.  One of the things he said was “I am wondering if you have a form Riley Day syndrome, it’s more common in people of Ashkenazi ancestry but…”  So I told him “Not Jewish, that I know of but my mother was adopted and we really don’t know anything about her father” and my husband chimes in with “But we’re doing that 23 and me thing”.  And to my surprise, the doc was actually enthusiastic about that.  Really, I was truly surprised because I thought “oh god he’s gonna think ‘crazy hypochondriacs!’ if he hears that we just did that”  He seemed to truly think about what might be up with me, and yes, that glorious letter that my primary care wrote helped, a ton.

Also helpful, I think, is that my husband got his work ID badge redone.  He works at Big Daddy BATH, and had originally started as affiliated with psychiatry, although what he does has nothing to do with psychiatry.  Now, his affiliation is more appropriately Neurology, so he got his badge redone to reflect that, and it reads “Mr. Patient PhD, Neurology, Granddaddy of all BATHS”  He should have added “bow to me ye mortals” to the tag too.

I do not have an answer, or a treatment plan. I  do have a very famous doctor who promised to look up some more stuff that fits what’s up with me, who said he would make his recommendations for screening and testing to either of two Autonomic specialists I wanted to go to with his referral, who said “Your primary care is right, EDS can cause some of this, but – and I’m embarrassed to say this – I don’t know how much,” who did not blow off the autoimmune stuff at all, who said that what my hands and feet do sounds like erythromelalgia (he’s the first person other than me who has said that), who discussed the possible diagnoses that he thought fit at first glance and what the treatment options would be for them.  And who thinks 23 and me is cool.   Not bad.  I’m seeing someone else, oh yes, the march continues, in December.  At least, December is when I’m on the schedule.  I will be a pest and try to get in sooner.  And I will definitely bring Mr. Patient, PhD and his magical ID badge with me.

Dr. Potato head, or Tater Tot

Photoshopped pic of doctor made out of tater tots

My neurologist.

Ah, well that is one neurologist I will not be seeing again.  He has the bedside manner of a potato.

I saw my primary care later that day.  He mentioned something about autism.  “Oh speaking of autism, saw a new neurologist today…definitely on the spectrum.”  He could not interact WITH me at all.  Could talk TO, but not WITH.  At one point, when talking about visual symptoms, he said “those blue flashes aren’t migraine.  what does your eye doctor say about it?”  I say “well, I had an eye doctor who I saw when I started seeing star bursts around light points last summer, and I was going to follow up with him but he died.”  Tater Tot shook his head.  I said “What’s the head shake for?  He was really old!”  Oh yes, I did.

At least he didn’t come across like someone who is looking for a fight.  And he came across as so globally socially non-normal, that while I left there saying over and over to my husband “my GOD!  I mean, just….my GOD!”, I did not take it personally.

Primary care:  “Did he have anything to say about the migraine meds?” “Oh yeah.  He could talk to me just fine then, when he was delivering what was basically a lecture after he took my history. He even was able to call up his ‘smile subroutine’ at that point.”

So, Zomig for abortive med, he wanted to do verapamil for prophylaxis but that has bowel implications and my primary care was like “no!”  and he wants me to switch back to amitriptyline from nortriptyline.  I was to ask the GI doc about that, but she was like “hi/bye” during our phone check in this week.

Primary care is at the end of his rope here.  “Is there anyone you can see who knows about this shit?  I’ll take directions, I really will.”  Since I am showing a good number more and more severe autonomic dysfunction symptoms, primary care is sending me to the Best Itty-B.A.T.H. (i.e. “BI-BATH”) in Big Northeastern City.  BI-BATH is not in the mega-hospital network up here, but it is affiliated with Ye Olde Ivy League University Across the River and they have a “Center for Autonomic and Peripheral Nerve Disorders”.  I think it’s just one neurologist and a handful of post-docs, med students, and RAs, but hey whatever.  I’ll take it.  They did my tilt table test in 2010.  Primary care really wants me to go to Baltimore too, for the EDS.  “Ok but what is that going to do, I mean, I’m not saying no but if it’s just ‘yep, you have EDS’ (again), then what?  Do these people actually talk to each other, talk to you?”

Toeing the line

Last night, my toe decided to just pop out of joint.  My poor husband, who’s been through quite a bit this past week including an exhaustive post-ER follow up visit yesterday with the GI doc, was unceremoniously awakened to the sound of me in pain.  It goes something like “fuck fuck fuck fuck fuck….” through gritted teeth.  “It’s my toe.  It’s just my toe, I tried to get back in bed and it popped out.”  I wanted him to know it wasn’t something critical so he wouldn’t be too alarmed.  The reason I was up was that the reflux was beyond horrible, so I had to get another pillow, then back up onto the bed and YOINK! out went the second toe on my right foot.  I got it back in, waited a bit, hesitantly tucked myself under the covers, and then ZOINK out it went again, this time with prejudice.  That’s when the profanities started.  Then it began waving itself around like it was on a float at a parade.  Damned freakish long toe.  It’s amazing how high up it hurts when it does this.  So unpleasant.  I could understand if I had done something odd with it, like sit with it bent up under me (a typical posture) or try to pick something up off the floor – I have crazy monkey feet and those bendy joints, so I can pick things up with my feet and put them on counters, tables, etc. I don’t pick things up with my feet anymore though, my mantra has become “just because you CAN do that doesn’t mean you SHOULD do that”.  I believe all of us hypermobile types should get this inked onto our limbs.  But I did nothing strange.  All  I did was use it like a plain old toe.

Again, I say, so unpleasant.

Got a free late night leg and foot massage out of it, but as nice as that was, I’d have taken a night without that pain on top of everything else and without waking up my husband over that.

Gastroparesis

It seems somewhat paradoxical that my gastric emptying time is so slow.  When I say slow, I mean it’s basically down to a trickle.  Top line below is my result.  Standards are below that.

Gastric emptying was:
17% at 1 hour, 29% at 2 hours and and 69% at 4 hours.
According to accepted international standards using this technique, median normal values for emptying are:
31% at 1hr, 76% at 2hrs, and 99% at 4 hours.
10th percentile values for emptying are:
14% at 1 hr, 50% at 2hrs, and 94% at 4 hours.
I still haven’t spoken to the GI doc about these results.  Keep in mind, the week…no actually the day, that I had this study, we had a terrorist attack in my city.  The BATH where my GI doc is was one of the hospitals that saw a lot of trauma patients, and admitted quite a few of them.  So they’ve been busy.  I left them alone for the week, figuring that the last thing they needed was little old me calling up and playing phone tag with the doctor.  And that week, other than during and immediately after the gastric emptying test, I was blessedly non-nauseous and didn’t have any gastric pain.  I was joking that the radioactive egg sandwich must’ve done the trick.  The study itself was rather horrible.  On the way there, my blood pressure took a nose-dive in the car and I passed out.  Showed up at the BATH looking like pounded crap, then had to choke down the egg sandwich, and I do mean choke down.  Lots of retching.  But I got it in.  Huzzah for me.  And I got through it.  And it was a good thing too because given the apparently fast state of my lower gut, I would never in a million years have guessed that I have gastroparesis.
Last week, I called early in the week.  She called me back after 9:00 PM.  I was nearly in bed.  So I let it go to voicemail and paged her the next day.  No call back.  And here it is a week after I called, and two weeks after the test and we still have not spoken about it.  I only got the results because the records eventually became available in my online record.
Last week I ate bad things (not a lot of them but enough apparently) and the upper GI symptoms are back.  Started up Thursday night, Friday things were unmistakably bad again.  While waiting for my follow up GI appointment on May 8, I have been researching gastroparesis.  And I’m now trying to modify to fit the situation:
– Started taking papaya enzymes.
– Resigning myself to a diet that is as liquid as I can get it, a visit with the nutritionist and a recommendation for a liquid supplement that is not made from milk products would be really swell but in the meantime, I think I’m just going to have to deal with starvation and jello.
– No more tizanidine.  I really believe this is what has gotten my gut into the bad spot it’s been in a few times now.  Last week not only included a cupcake, several pieces of candy, and a very ill-advised pad thai.  It included several days of tizanidine on top of a few days of Levsin.  This is now going to be an unallowable combo for me I think.
– Chewing gum.  Helps the stomach think it’s time to empty.
– Heating pad on the abdomen.  It helps.
– Walking after I eat.
– When I do eat a solid, chewing really well.
– A whole bunch of Zofran.
– Just in case low acid levels are contributing to the slow emptying, I am cutting back on the PPIs for now.
– Weaning down off the Amitryptiline.
I’ve also got a list of questions I want to ask, including can we try erytrhomycin before we do reglan, can you take reglan as a rescue drug rather than as a long term prophylactic, and do you have a good neurologist I can see since I’m going to have to either stop or significantly limit the drugs I’ve been taking for my migraines.
Ugh.  This was a new trick I could’ve lived without.  I’m guessing it’s been going on for a while.  And it’s probably autonomic and/or EDS related, so things like the PPIs may not make a difference.

long lost people

Apologies for the long absence.  Tough times for me personally and up here in Big Northeastern City.  April is a cruel month.  I’ll post more about that later.

Last night, I got a call from a number I don’t know.  I recognized the area code as one from the woodsier part of Northeastern State but not the number.  Eh, that’s what voicemail’s for, I thought and let it go.

And then I got a text.  It was from one of my cousins and she mentioned that my mother (boo, hiss) had said she should call me about some medical stuff.  I had two sets of cousins for most of my childhood.  I say “most” because my mother was adopted and found her birthmother and a whole set of half sisters with kids when I was in my early teens.  So that opened up another bunch of cousins.  All boys, which was funny since the two sets I’d had up til then had been all girls.  Three girls who were my dad’s brother’s kids (although my dad came from a pretty large family, all my dad’s sisters had endometriosis back when that meant unaddressable infertility) and three girls who were my mother’s brother’s kids.  My mother and her brother were both adopted.  Remember that, it’s important.

The one who reached out to me was my uncle’s second child.  Another middle kid.  I have the following associations with her:

  • She was always very pretty, in a fairy-like way.  Gorgeous long blond hair on top of the delicate features she and her sister shared.  
  • Young.  Always so young.  All of our cousins were younger than my little brother, which meant that the eldest of the cousin sets was still my junior by some years.  The consequences of this are that although I felt an affinity for the middle daughters in both sets, there was a bit of a divide since in childhood social spheres, age does make a difference in peer relation. 
  • Peppy.  Not crazed with energy, but peppy.  
  • Easily injured.  It didn’t keep her down, but she did fall a lot.  

Seeing her text, I immediately called her back.  yeah, it was late and yeah I’m gonna pay for that today but I had been thinking of her and her family so much over the last few months.  I think it started around christmas time and has just been picking up steam.  Not a week has gone by where I don’t think of them.  We weren’t super close.  My parents were just kind of isolated and aloof so this meant we didn’t get really close with any extended family.  So I’m not sure why this branch of my tiny family tree was on my mind so much but it was.  And when I saw her text, I thought “ok if this doesn’t mean we need to connect, I don’t know what does.”  The first thing she said was that I sounded exactly the same.  It’s been almost 20 years since I last saw her, and that was at my first wedding.  I’d be surprised if I said more than a paragraph to her during that since I was stressed and running pillar to post and she was sick and down for the count some.

The next thing she said was “so I hear you’re a zebra too.”

What is up?  Health wise, I asked.  Turns out that my cousin has very likely got EDS, definitely has POTS, heavy on the “T”.  And endometriosis.  The list goes on but I don’t want to put all of her health info up here like it’s mine.  This is an anonymous blog but still, not my right.  Suffice it to say, we have a hell of a lot of overlap in clinical presentation.  Although she’s cold intolerant

I was staggered.  At one point, she said “I feel like I’m talking to myself.”  And I knew exactly what she meant.  “Are you sure weren’t not related by blood?”  Pretty sure.  But boy that is some strangeness.  “WTF was in the water?  Doesn’t it make you wonder if there was something in our environment?” I asked.  But it’s not like we spent a ton of time together or at each other’s houses.  We lived rather far apart too.  We were on city water, she was probably on well water given the rather rural town where her family lived.

accentuate the positive

I recently “unliked” an EDS group on Facebook.  I hadn’t been active in it, just a reader.  But then some drama broke out and I found myself starting to seethe reading the comments people posted…and I decided to just drop it.  I have no idea what kicked off the drama, from what it seems, someone must have written something nasty to the moderator/administrator.  And then all hell broke loose.  What got me riled was reading “supportive” comments of people which went something like this:  “I hate all the whiners who let the disease take over their life…”  Basically, multiple slams on people who are not chipper and positive and “can do” in the face of a debilitating illness.

I have no room for that in my life.

Everyone has bad days.  People with chronic, life stealing illnesses are going to have a lot of them.  And a lot of “negativity”.  I guess this is a sore point for me because I find that the “buck up and shut up” sort of attitude is so prevalent in life and serves to perpetuate the belief that if you are not up and running marathons, your “rotten” attitude is responsible for your poor physical state.  You get this from so many sources in your life, when this attitude is embraced by members of a “support” group, I run in the other direction.

PT/OT for EDS

So I’m going to try it.  What finally pushed me?  It was turning.  I was in the kitchen to get something, I don’t even remember what now.  Walked to the rack that had it and reached (not stretchy reaching, just reaching) for the thing and PING went something in my pelvis/abdomen.  I realized immediately that it was because my shoulders and hips were not lined up, see I had done the dread “turn and reach” maneuver that is apparently forbidden by my bastard body now.  It was not a far outside a normal range of motion turn and reach, but apparently it was enough.  And let’s be realistic here.  I have no clear sense of what is beyond a normal range of motion since a normal range of motion for me is apparently a crazy “go go gadget arm” motion for someone else.

I held my gut where the pain was, it’ll go away, I thought.  I’m a crazy optimist.  Breath, and pain.  Start to move leg, and pain.  Finally, I sat on the floor in the only comfortable position I could find (slightly leaned back, leg on the offending side out in front of me) and tried to relax out of whatever spasmy bullshit was happening.  Putting firm pressure over where it hurt helped.

That was Friday night.  It still hurts today.

One of the BATHs actually mentions EDS on their rehab medicine page and has a protocol for EDS, at least a somewhat encouraging sign.  When I called, I was very upfront about it.  “I have Ehlers Danlos, hypermobility type, and I have chronic pain.  I’ve been told to try to see someone in PT or rehab for some help.”   The secretary put me on hold for a minute, then said “Ok, sorry, I was just checking to make sure we do that.”  Slightly less encouraging, but it was not a long wait while she checked so I’m hopeful.  Also, she started to schedule me then said “No, wait, not with him.  He’s new.”  Also a good sign.  I do not want someone who has no idea what EDS is.  Or as my primary recently put it, “If you do PT, we’ve gotta find you someone who knows what this is so they don’t kill you.”

I’ve been feeling crappy the last few days.  I think it’s migraine, I’m not sleeping well.  Pain = poor sleep.  And so you can imagine my delight at being asked to attend a meeting in a far flung building which truly is uphill both ways on a day when they’re calling for first snow in my area.  Oh joy.  I feel like I am personally keeping the cabbies outside my building in business.  Did I mention it’s a “bring your own laptop” affair?  Yep.  Bring a laptop, because the boob who chose the room for this not only chose one far away from most of the staff who are being trained but also chose one without computers.  I’m pretty stressed about it since even walking for coffee yesterday was a massive and physically difficult achievement.  Coffee shop is only two blocks away on flat terrain.  By the time I got back to my building, I was literally holding on to the wall to keep from tipping over.  With regards to the trip uphill with laptop in the snow today, I feel like someone said “hey, you’re going to have to walk a tightrope today.  That’s ok, right?”