reversal of fortune

Today was going to be a doozy.  It was going to start with a not terribly useful departmental meeting that would involve foregoing bringing in food since after it was over, I would have to walk a long, cold, and slippery outside path back to my office.  This means lightening the load as much as possible, which means not bringing as much food in as I normally would to ensure my calorie count for the day isn’t in the double digits.  Also on deck for today was a root canal.  And I’m in a migraine cycle.  Had two last week, one at work with vertigo and then a few days later one at home with a big fat scintillating scotoma in, of all things, my right eye.  Normally it’s right visual field, left eye.  This time it was right visual field right eye.  Still got a preference for the visual fields it seems, but the change of eyes means it got on top of me before I realized it was coming on.  I seem to have a bit of neglect for that visual field.  I’ve noticed it in editing.

The endodontist, after reading through my chart and seeing the last dentist’s freak out in the notes about my allergy to palladium (finally, someone who took that seriously), had given me the substances that would be used in a routine root canal to patch test last week (on migraine day).  Four different things, four patches on my back that I slapped on with the help of Mr. Patient on Saturday when he got back from conferencing in Florida.  Less than 24 hours in, one of the patches started feeling like someone was putting out a cigarette on my back.  Sure enough, on Monday when we removed the patches, that area (with hte root canal sealant) was highly positive.  Fluid filled blister positive.  Still hurts, burns, and itches days later positive.  Thank effing god I did that patch test.  

So, between the positive patch test and the big ass snow storm that blew in last night, my day has gone from one full of misery and physical trial to one with nothing on deck except for chilling at home with Mr. Patient and cats, coffee and netflix, and all the food I can eat.  Pretty cool.

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.

product

The search for a new shampoo has ended with success, at least if my patch testing can be trusted.

Since April, my hair has looked electrified.  I suspect that there is a combination effect of my poor nutritional status (you don’t lose 10 pounds in a few months due to constant pooping without there being some ramifications for micronutrients), stress, and bad shampoo.  By “bad” I mean shit I’m allergic to.  I have since stopped washing my hair daily, stopped brushing or combing it when it’s wet, and modified my diet (removed the evil non-dairy creamer I was using and hey, like magic my gut has improved by about 60%!).  But still, I need a shampoo that is not going to turn my head into an itchy, bristling nettle patch.

Inspired by the allergist, I started patch testing.  Tried one my hairdresser recommended without a proper patch test and promptly had to rewash my hair about 5 times to stop the itching.  Tried a so called “hypoallergenic” one by Suave that burned my arm.  And finally, my lovely sweet darling husband went to a fancy store and got them to hand over two tiny pots of Kiehl’s shampoo, Olive Fruit Oil and Superbly Smoothing.  Patch testing the olive oil one and had a reaction. Did TWO patch tests with the smoothing one and DING DING DING!  WE HAVE A WINNER!  Woo!

And boy let me tell you, when I react to something, I really react to it.  It’s been nearly a month since I had the patch testing done at the allergy clinic and I still have red patches on my back.  In fact, one of them just reactivated (one of the Nickel patches) and is now all up and itchy again.  I saw my primary care last week, Thursday, and showed him.  He said, “Oh wow, look at that!  Can I take a picture?”  I said yes and he bolted out of the room yelling for the nurse “Get the camera!  Come and take a look!  You gotta see Dyspatient’s back!”  LOL.  Too funny.  He wants me to see a dentist at the B.A.T.H. he’s affiliated with to talk about whether we can remove my metal fillings now that we have some clear, controlled evidence that I am indeed exceptionally allergic to some of the metals that are likely to be in an amalgam mix.  I told him I had mentioned it to my current dentist.  “What did they say?” he asked.  “He said What?  you think there’s something wrong with amalgam?  Lalalalalala I can’t hear you!'” I said, with my hands clamped over my ears.  “He was kind of a douche” I added.  He said “Let’s see if we can get you in to see someone who’s not….” “…quite so douchey?” I prompted.  Not that I’m looking forward to having the metal drilled out of my head, and how they’ll do it with me being allergic to the shit they put in dental dams (yup) will be anyone’s guess, but I’m game for looking in to it.  I’ve been wondering about it for a while now, what with all the mouth pain, blisters, swelling, sores, and GI symptoms.

Say “aaaaaaaaa”

Off to see an oral medicine specialist today.  To say that I am not enthusiastic about this appointment is an understatement.  I am in fact so apprehensive that I couldn’t get to sleep last night (the chronic random leg pains and itchiness didn’t help but my wakefulness only spotlighted them – most nights I manage to drop off after only a few grunts of pain and scratch-irritation).

The referral came from my primary care, who says this person is the best to see for oral manifestations of systemic diseases – read as the best in the area, although this area has a lot of best in the fields so she may in fact be in that set.  However, he also mentioned that he does not find her personality to be pleasant.  My sense is that she is rather disagreeable.

Small wonder I couldn’t drop off.

So why go?  Because every couple of months, my mouth goes from feeling moderately sore and peely (sorry if this is TMI, this is a medical/patient experience blog so you gotta expect that now and then) to being ungodly painful with sores and blisters.  I have a history of “spontaneous” oral thrush – and don’t even try to give me an antibiotic without some nystatin swish and spit or troches.

After the last round failed to respond to candida treatment (clotrimazole troches AND over a week of Fluconazole), he said “and this is why we don’t treat YOU over the phone.  You’re too complicated.”  He also said he’d never seen mucosa this red, and that this didn’t look like thrush.  Or at least not like typical thrush.  My money’s still on thrush, just the kind that gets in deep.  Or an allergic reaction to my fillings (I have metal allergies…yeah, why did I let them put metal in my head then?  Because I’m stupid sometimes).  Or a combination of the two.  One of the dentists at my dental clinic wrote it off as nicotine stomatitis, which doesn’t look right in pattern or type of lesion, but also mentioned this same oral medicine specialist as a go to person before he had his big “TA DA!” diagnostic moment.

I’d post a picture, but I don’t want to gross anyone out.  I will be bringing the pictures with me – I have them from three different flare ups of this thing.  Because of course, now that I finally have the appointment, my mouth is not in its acute and awful state.

Wish me luck.

Some days

It’s beautiful out.  I haven’t been outside yet but the sun is shining and the birds are singing and the weather service says the high is about 49 – a perfect temp for my overheating, migraine with vertigo, hand, foot, face and ear flushing body.

So why the hell am I in such a rotten mood?

I think it’s because of yesterday.  I think it’s because I took time off of work twice now this past month to get this persisting pain checked out and it’s not resolved.  And it’s not the lack of resolution alone that is, I think, putting me in such a foul mood.  It’s the anticipation of the doctor’s response.  It’s waiting for that phone call or worse waiting for them not to call and for me to get irritated enough to call them when I’ll be told that because the test they ordered didn’t show anything, I’m fine.

Breaking this down, it’s not fine when told I’m fine and it’s missing parts of my life to deal with a thing that makes me miss parts of my life and feeling like the doctors fail to respect that in many little and big ways.  

So that’s probably why I’m in a shitty mood.  Add to it that my dentist’s office has been pissing me off with a couple of poorly conceived office and billing practices (the latter I tried to deal with for the second time today only to be given a serious run around) and I’m in a boil over mood at the moment, despite having four days off for totally non-medical reasons (took a vacation day today and Monday’s a holiday) and despite the fact that the sun is shining and the birds are singing and it’s the just right temperature for my day not to suck.

I need to shake this mood.  I think a trip to the beach might be in order.