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?”

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browser buggery

Been trying to post for the last few days but to no avail.  Seems like it’s a browser issue since using Firefox fixed it.  Grrrr.  Very annoying WordPress.  I use Chrome.  up to date Chrome.  And it worked just fine until a few days ago.

what’s in a name?

Ehlers-Danlos Syndrome, Hypermobility Type

Disease characteristics. Ehlers-Danlos syndrome (EDS), hypermobility type is generally considered the least severe type of EDS, although significant complications, primarily musculoskeletal, can and do occur. The skin is often soft or velvety and may be mildly hyperextensible. Subluxations and dislocations are common; they may occur spontaneously or with minimal trauma and can be acutely painful. Degenerative joint disease is common. Chronic pain, distinct from that associated with acute dislocations, is a serious complication of the condition and can be both physically and psychologically disabling. Easy bruising is common. Functional bowel disorders are likely underrecognized. Autonomic dysfunction, such as orthostatic intolerance, may also be seen. Aortic root dilation is typically of a mild degree with no increased risk of dissection in the absence of significant dilation. Psychological dysfunction, psychosocial impairment, and emotional problems are common.

From Levy HP. Ehlers-Danlos Syndrome, Hypermobility Type. 2004 Oct 22 [Updated 2012 Sep 13]. In: Pagon RA, Bird TD, Dolan CR, et al., editors. GeneReviews™ [Internet]. Seattle (WA): University of Washington, Seattle; 1993-.Available from: http://www.ncbi.nlm.nih.gov/books/NBK1279/

I had an appointment with a new dentist yesterday, a group at The Grandaddy of all local B.A.T.H.s.  On the substantial intake paperwork, I noted under “serious diseases” that I had Ehlers-Danlos Type III/Hypermobility.  Would it be too bad of a pun to  say that the reaction I received was literally jaw dropping?  Both the dentist and the hygienist knew what it was and what some of the implications were for things like chronic  pain, orthostatic intolerance, buising…all of which feature into dental care in a big way.   I am stunned.  This is not a disease I have been entirely at ease with in terms of diagnosis, however the clinical picture does fit me exceptionally well.  If it turns out that the name is not right, that there is some other pathology at play, well, when medical science catches up I am open to changing gears.  But for now, I’m sticking with the “if it looks like a duck…” standard.  Having a name for the clinical spectrum of misery is exceptionally convenient.  This is the first time I have actually been able to successfully use it in a health care setting.  I am thrilled.  Truly.

So our plan is to work on the metal fillings slowly and remove them one at a time with me very premedicated on benadryl and whatever other allergy meds I can get my hands on (minus steroids, they really don’t treat me well).  After reading the reports on my metal allergies, including a severe reaction to nickel and palladium (both of which can be found in some dental amalgams), my new dentist voiced concern about drilling them out.  I share that concern but underscored to her that while I am not certain the metal fillings are causing so much of the mouth and GI problems I’ve been having since they were installed in my head, I’m convinced there’s at least a  good chance these things will improve if they are removed.  My quality of life is not great and I can improve it, I want to.

It is a little scary.  She raised the concern of anaphylaxis from the vaporized metals during the removal.  The dental group’s office is mere steps away from The B.A.T.H. though, so if I’m going to risk it, I think this is the place to do it.

bad dream and blood sugar

Which came first?  The low blood sugar or the bad dream that woke me up this AM at a quarter of 5?  The outcome is the same – laying in bed after sleep-kicking my husband (hard, btw) and not able to ramp down and go back to sleep.  So I’m up, drinking sugary coffee and turning my brain away from the bad family dreams to doing crazy things with PDFs.  The PDFs are for a student I work for.

My husband asked me last week if I felt that my job was challenging enough, “You know, I mean intellectually.”  It is challenging in other ways, for sure, and I’m glad he realizes that.  Is it intellectually stimulating?  Well, I do miss the more scholarly pursuits that I had once been on track to do forever.  But I think even if there had been jobs to be had, I would have eventually felt like what I was doing was glorified naval gazing.  With my job now, what I do is a lot of problem solving.  And it’s problem solving that allows people to get to where I got, to get an education, to have the tools to discover and choose (at least to some degree) what they want to be “when they grow up”.  While I do like the helping people angle, I have to admit that this is probably secondary.  I am by nature a problem solver.  I like untying knots.  Christmas lights used to be my job as a kid.  There is something engaging and ultimately rewarding about finding the connections, tracing the path, removing the tangles.

Ok, so I’m up.  Coffee’s working, time to work.  Do something engaging.  Untie a knot that is workable.  The ones that exist in my mind and body can wait.

 

loose ends

I feel frayed.

My meds are a mess.  I’m nearly out of one of the gut meds that I use sporadically.  Unfortunately, for the past few weeks or so I’ve been in a higher use state and so I’ve blown through my short supply of this drug.  The drug is Levsin SL, otherwise known as hyoscyamine.  I take it for what I call balloon animal gut.  Balloon animal gut is more than just awkward noises – it often entails pain that is literally “gut wrenching” and of a type that can easily make me pass out.  So the hyoscyamine is a necessity, it takes the edge of the cramping, allows me to get out and going to work despite having a bad GI day.  And I have exactly two pills left on an expired prescription.  My insurance won’t pay for it and it’s not cheap.  This is how it expired.  When it used to be covered (prior to 2008), I stock-piled it.  Since I took it sporadically, I could fill it each month and know that I was essentially setting aside extra for when I needed it.  For the last few years, it’s been something I pay out of pocket for so I refill it sparingly.  My last fill was at the end of July.  It expired August 2.  You’d think the pharmacy would have a big warning label or something to let you know that.  Nope.

So I logged on to my drug store’s web-based Rx management system.  Ok, since I’m looking up the hyoscyamine (confirming my suspicion that yes, there were refills but they are inaccessible to me now that it’s expired and the doc  who ordered them was the worst GI doc I’ve seen in a long time and dropped over a year ago), I look up the other upcoming drugs I need.  Amitriptyline, which I take every night – not PRN.  Filled October 15, not due for a refill until November 20.  Think about that for a second.  Do you see the problem?  And then there’s Pantoprazole, which my current (and soon to be former) GI’s office made a mess of.  Saw doc in May, she wrote for the wrong dose (once a day instead of twice).  It ran out.  She was away.  I called and got a new script with several refills which would have taken me well past November, which was my next appointment with GI doc.  Then GI doc came back and got the messages.  She calls in a new script with only one refill.  The pharmacy apparently cancels the standing script with the multiple refills and fills the new one while I’m in the middle of a month – i.e. I didn’t need a refill or new script just yet.   The new one triggers my insurance company to flag the drug for prior authorization, although the pharmacy tells me that the insurance company wants me to fill this by mail and that they will only pay for two weeks on this new script.  I call the insurance company, they say no, it’s an authorization issue.  Ok, call the doc and find out she’s on maternity leave but her nurse puts through the authorization.  Also cancels my November appointment because, she tells me, the GI doc says I don’t need it and can be seen when she’s back from maternity leave.  So I have one half month of the Pantoprazole, then I get it filled “again” and get another month, which I’m in the middle of right now.  Online, I see that the old script from the fellow from the summer is still active.  I call the pharmacy and ask “Can we just fill that?”  Nope.  Because of the authorization, I can either have the fellow (or whoever is covering)  call in a NEW script with a NEW authorization or the GI doc can call in a refill/renewal under the current authorization.  “But she’s on maternity leave” I say.  Sorry, nothing they can do.

Oh, and my blood sugar strips are out of refills too.  Because you know, I clearly was going to stop being hypoglycemic in five months.

Sweet mother of god, does this have to be such a fucking mess?   Tick tock, it’s nearly 9:00.  Time to find out which, if any, of my doctors are in today and who’s going to call in meds and authorizations galore for me.

A significant element of this is that so many of my doctor appointments are not routine check up/follow ups.  They are sick visits.  And at sick visits, my maintenance meds are the last thing on my mind.

I’m already in a bad mood from having spent the weekend feeling crappy (feeling better now btw), so this is probably bugging me more than it should.  Or in ways that it shouldn’t.  But there you have it.  I’m in a rotten mood today and I’m feeling like my docs have sort of left me with a huge mess.  I really hope one of them is willing to help me out of it.

Flu?

The last time I had the flu was in 2004.  It was a nasty round of intensely sore throat, crushing body aches, and a high fever.

This Thursday night, I was heading towards bed, it was still early, about 9:00 PM when I just hit this wall of head buzzing, trembling, exhausted, sick.  WTF?  Checked my blood sugar and blood pressure, not that.  I woke up the same and spent the day at work feeling like pounded poop with several rounds of feeling like I may pass out.  My temp’s up a bit but not to the point of febrile, my throat is sore and I’m a little congested but nothing massive.  There’s just that achey, blurg feeling.

“Oh but if it was the flu, you couldn’t have gotten out of bed and managed to get to work” the disbelieving, skeptical voice in my head (that sounds a lot like a very irritating LPN from my former university’s infirmary) says.  To that voice I respond “bullshit!  I can meet with and defuse a difficult student, download and install software on a poorly running laptop that won’t connect to the wireless network, research an ancient Viking saga and find it in three different formats in both the original language and English translation in 20 minutes for a student taking an obscure literature class…all with a blood pressure that would make most people collapse in a heap of useless shaky mess.  I live with these feelings, and I frequently push through them because I have to.  I take breaks, I put my feet up, I lay on the couch, I am a master at modifying my routine – so much so that my routine now is more marked by modification than anything else.  A handful of candy, a bottle of water, a draw full of tylenol, advil, tissues, hot and cold packs, and a pocket in my purse devoted to stronger meds – I am fucking prepared.

However, all that said, I did feel bad enough that I bailed early at work.  Which is good because by the time I was outside waiting for my husband to pick me up, I was literally stumbling across the sidewalk as if I were drunk.  My legs were like jelly everything was tippy.  For those of you who have passed out, it was that stage you have just before your vision and hearing fills with static and you find yourself suddenly pressed hard against something which time and returning consciousness eventually reveal to be the floor or ground.  I rode home in a relatively stuporous state, then crawled onto the bed, fully clothed, with the cat at my side when I got home.  I dozed for about a half hour before getting up and doing my after work routine of changing, face washing, cat box, water, and food changing….then straight to the couch.

Times like this highlight how hard it is for those of us with chronic fatiguing illnesses to recognize and appropriately act on an acute and separate illness.  My case in point, the first thing I assumed was that my blood sugar or blood pressure was bottoming out.  People like us have a paradoxical tolerance for being able to work while feeling amazingly shitty.  I am quite certain that if I had a better, healthier baseline, I would not have even attempted to go to work yesterday.  If I had not still believed that this was just part of my routine feeling like shit, maybe a strangely manifesting migraine, I would have stayed home.  I am very anti- spreading your illness around.  As it was, when I realized that yes, indeed I had flu-like symptoms, I insisted on staying a good five feet away from my employees and not touching their mouse or keyboard.  “Please, I’ll just stay here.  I’m sick and I don’t want you to catch it.  I’m probably leaving early so let’s go over next steps in the project so you’ll have work to do later”.  With my boss, when I had to help with an issue with software she’s still new at using, I explicitly told her “I really don’t want to touch the mouse….”  I’m glad I work in an office where this is not seen as strange.  She actually thanked me.

So, is this the flu?  I’m not sure.  I certainly have “flu like” symptoms, minus the fever.  I always thought that without a fever, it can’t be the flu.  But it turns out I’m wrong on that count, according to info like this blurb from the CDC.  And so it’s couch time for me this weekend.  I had been planning to do some much needed housework and go for brunch.  Nope.  It’s looking like a couch weekend.  Because although I will sometimes push myself beyond a reasonable limit for things like work because there is a real need and a real payoff for that, I have learned the hard way that nothing at all good comes of doing that around my house during the time I have to rest and recuperate.  So for the next few days, it’s reclining, Masterpiece Mystery on Netflix, soup, and fluids.

cold, seasonal allergies, or other?

For the last two days, I’ve had that sore throat & raw mouth feeling again.  Comes with a stuffy nose, was it congested before?  Yeah, I think so but not so bad.

Cold?  I spent three hours of each of the last two days of the week locked in a poorly ventilated room with a group of co-workers at an HR contrived event.  I very easily could have picked up a cold.

Seasonal allergies?  Some years back, when I was a grad student in the New England Outback, I presented to the school’s student health center with symptoms of sinusitis.  I remember sitting in the hallway feeling like pick axes were being driven into my cheekbones, feverish, and feeling generally awful.  The nurse who saw me said “You know, you’re in here every November with a sinus infection…I think you should consider taking something for your Fall allergies.”  Allergies?  What?  I don’t have allergies!  Turns out I do, likely to leaf mold given the October/November timing of it.  The hurricane took down most of the leaves, left piles of rotting wet leaves everywhere, so there’ a good case for allergy as the culprit.

Other?  Since seeing the reactions I had to metals in my skin test, and getting some counseling about foods with high nickel content, I’ve been trying to avoid chocolate.  It is high on the list of nickel rich food.  At the risk of overstating this, it is nearly tragic for me to give up or at least limit chocolate.  I did pretty well until Halloween rolled around….which makes me wonder.  Could this be a food mediated allergic reaction?  If so, we’d expect an increase in gut symptoms (check) and perhaps skin symptoms (red blotchy spots on my chest and neck?  Check).  It also makes me wonder if my November allergy symptoms are not so much respiratory trigger related as they are a by product of the inevitable increase in candy (chocolate) consumption leading up to and around Halloween.

And then there’s another.  Because my gut symptoms have been worse (for whatever reason, chocolate or no) and because I had to be up and at the HR event early for two days in a row, I’ve been taking a lot more anticholinergic the last few days.  This means more dry mouth.  Which means a good climate for an overgrowth of candida, which my tendency to oral and oro-pharyngeal thrush suggests is always lurking just around the corner.

So here’s what I’ve done.  I’ve increase the allergy meds, started using saline nasal spray, increased water intake (tough, I need to set reminders on my cell phone), I’m taking a week of fluconazole, and I’m avoiding chocolate.  That last one is hard with there still being so much Halloween candy around but that will drop off soon enough and it’ll get easier.

I think once I’ve gotten things tamed down a bit, and after the snow comes and we have less leaf mold about, I’m going to do a test with chocolate again.  It’ll be sad to give up chocolate for good if I have to, but it will be good to know if this is the trigger for so much of my “mystery” symptom set.

what do you do?

Someone became acutely ill at work yesterday.  I heard someone with a tense voice ask at the front desk for someone to call emergency services.  People were better than I’ve seen, or experienced myself.  But there was this strange inertia about making the actual 911 call.  I remember my sister telling me about a time she was on a bus and the driver lost consciousness.  The bus was parked, but the engine was running.  My sister, ever the self preservationist, said “someone has to move him out of that chair or shut off the bus”.  Her biggest concern, even while relating the story later, was that the driver could inadvertently put the bus in gear and endanger the passengers.  I suppose you could see this as a utilitarian approach, that my sister’s concern was for the good of the many but I know her very well and I know that if that many had not included her, her response would have been less urgent at least.  “Did anyone call 911?” I asked.  No, not for a while.  According to my sister, it took a long time for any of the passengers to get out a cell phone and call.  I don’t think my sister had a cell then, so she wasn’t among the set of people who I’d have expected to call.  She was puzzled by it too.

It’s an interesting sociological phenomenon.  I tried looking it up, but most of what I found is more about people calling 911 for the wrong reasons or about how friends of stroke victims are often reluctant to call 911, which is a little different than when someone goes from walking, talking, and interacting normally to hunched over or on the floor writhing in pain and crying.  There’s a visceral response to a person crying in pain, or there should be.

This is one that I am truly fascinated by, for intellectual and personal safety reasons.  I’m imagining the psych/behavioral experiment that would elucidate reasons why, but anything I can imagine seems rather unethical.

So here’s the thing.  If someone says “call 911” to a group of people or if there is a situation that seems to require an emergency medical response (you don’t always know but in the two cases I’ve mentioned above, it was obvious), then someone has to actually pick up a phone and dial.  Don’t assume someone else is going to call.  If you ask in a clear and audible voice “has anyone called 911?” and if you get any response other than a definitive “yes” from the person who has called or if there’s a delay in sorting it out, then make the call.  Worst case scenario – dispatch gets more than one call.  Best case scenario – you get someone the medical attention they desperately need but cannot get for themselves.  One tip I did find in looking this up – call from a land line.  If one isn’t available, call from your cell but tell the person who answers your location immediately (as in city and street address).  I’m surprised I remembered to do that yesterday.  I nearly used my cell when “911” from the office phone didn’t go through and I had to hang up and dial “9” first.  Seems like something they should change, or announce on the phone with a label.