what’s not fun

…Is a nasopharyngeal swab.  Nope, not one bit of fun.  Warning:  a bit of “ick factor” in this post.  

A wire with a blob of cotton on the end.  Up my nose.  All the way to the pharynx.

My doc says “oooh, bloody snot?  I love that stuff!”  I did mention he’s an infectious disease doc, right?  So out comes the swab and up the nose it goes.  Yowch.  But it’s done and off, so I’ll know what’s going on up there, which is good.

Why does no one want to buy that I’m basically riddled with candida?  I know that the whole “systemic candida” is apparently a trendy catch all for the lovers of colon cleansing and whatnot, but honest to god, I get real live overt candida overgrowths at the drop of a hat.  Dry mouth?  Thrush.  Antibiotics?  Thrush.  Oral allergic reaction to something I shouldn’t have eaten?  Thrush.  Flu that knocks my immune system on its ass?  Thrush.  Given that all this thrush started as a result (I think) of a well intended but silly doc prescribing steroidal nasal spray, I see no reason why candida overgrowth in my nose would be such a stretch.

But that’s what cultures are for I guess.

The problem with culturing for candida is that candida is just there, even in non-symptomatic people.  Even in the “healthy” folks.  It’s bad when it is there in abundance, bad when it becomes invasive, bad when it gets into places it shouldn’t be.  And for the record, your mouth is a place where it lives and should be, just not in abundance.

So how do you know, if a culture grows out candida, that it means the sick person is sick from an candida overgrowth?  From what I’ve been told, you don’t.  I think a better option would be in office slide under a microscope.  See a lot of candida?  Then you have an overgrowth situation.  Not responding to fluconazole or topical agents?  Send it out,  but send it for a culture and sensitivity please.

Eh.  When I rule the world, things’ll get done right, dammit.

Until then, I have a script for more fluconazole and a script for an antibiotic that is supposed to be kinder on the gut.  I’ll start it when I have a chance to pick up some probiotics, because god knows I don’t need to go taxing the gut right now on top of everything else.

Kitty’s doing better.  Still a little drunk.  She let me pick her up and lay down with her in my arms for several minutes.  This does not happen under normal conditions.  Normally, I (and only I, not my husband) am allowed to pick her up and hold her for as long as it takes to walk to a bed or couch, then she scrambles away from me like she just remembered that I’ve got cooties.  Today, she stayed nestled in my arms as I lay on the bed.  She purred up a storm and kneaded my shoulder (thankfully I am wearing a sweater).  A nice treat after a tough day and a tough week.

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dazed and confused….cat

Today, I’m out again.  I have a doctor’s appointment with my PCP because I still feel pretty cruddy, the thrush is hanging on, and I think it’s in my nose.  Ewww.  And also eek, because from nose to sinuses is a short trip.

Photo of cat.

If only she were this calm right now…

And the cat.  On Tuesday evening, my husband and I were greeted (eventually) by our cat who was acting a bit lethargic and who had a squinty and goopy left eye.  So it’s off to the vet for her today, the first appointment we could get to.  The last time the cat was at the vet, they wrote her a script for xanax.  This is because she’s a handful at the vet.  While I do understand the need to claw and hiss at the doctor (I’ve seen a few myself who have provoked a similar urge), I’ve never had a cat who was this freaked out at the vet.

We got her script filled last night and this AM, when I finally dragged myself out of bed, we drugged her.  Now, she’s stumbling around the house like a drunk, eating everything in site, pigging out on catnip, and just generally trying to get into trouble.

Oy.  Just had to go rescue her from the kitchen counter.  She never jumps on the kitchen counter, but I guess that’s what you do when you’re drugged up and you have the munchies.

To occupy her, I have created the “easter egg hunt” for dry cat food.  A handful of crunchies tossed into a blanket on the floor.  Oh boy!  She’s busily foraging in the blanket now.  Thank god.  Note to readers with cats.  This is a great tool to keep your drugged kitty away from things like the stairs, coffee table, kitchen counter, and bathroom sink.  And since she’s so food obsessed, a trail of food into the carrier (which she usually flees from at the first sound of the door creaking open) worked like it does in the cartoons.  She went “gobble gobble gobble” all the way into the carrier all on her own drunken little kitty legs.  So hey, there’s an upside.

Downside, I feel too crappy to take her.  Husband’s doing it on his own.  “You don’t look like you feel good,” he says as I am sitting on the Easter egg blankie on the floor with my head resting on the couch.  “I think you should rest here and I’ll take the cat to the vet”.  God damn that man deserves not just a medal but a statue, and maybe a park.

Another trick

Here’s a new one.  Back pain, spinal back pain to be precise.  Oh the hits just keep coming.  Last night, in bed, tried to turn over and woah…my back wasn’t having it.  It’s a very circumscribed area and it is exactly on the left side of my spine.  Thoracic.  Yay.  Because I needed that.

My guess is I hurt it coughing.  It does not feel like a muscle pull, unfortunately.  It feels like it’s right smack on the bone.  Even when I’m not turning or twisting, i.e. just sitting here, it feels like someone’s putting out a cigarette on my back.  Crap.  Crap crap crap.

And here I was celebrating because yesterday, I didn’t feel totally awful.  Bad headache as the day wore on that was like having a drill going on my skull by bedtime, but believe me, that was an improvement from how I had been feeling just the day before.  So now my body says “hey here’s a new one” and off we go.

opportunity

Since 2008, I have struggled with a chronic form of candida in my mouth (and I think my nose).  What started this?  I suspect those steroidal nose sprays that some well intended allergist put me on.  I never could tolerate them, burned like hell when I used them.  I didn’t use it for very long, but apparently long enough.

One of the more frustrating things about this is that a lot of doctors insist that “immunocompetent” people like me don’t get thrush (acute) let alone chronically.  Interestingly, my brother, who is HIV positive, also gets this.  And he is also told by his doctors that he can’t possibly have thrush since his T cells just aren’t low enough.

I’ve worried about what would happen if my immune system were to take a hit.  What would this nasty bugger that flares up on its own from time to time do if for some reason my immune system weren’t up to the task of keeping it in any sort of check?  Last week, I found out.  The flu.  Nasty little secret about the flu.  It’s not just “a really bad cold”.  It’s an immune system marathon.  It leaves some first line parts of your immune system struggling and depleted.  And so there I am, all immunocompromised and with a mouth full of thrush just waiting for an opportunity to break out, which it did.

I feel like pounded crap.  I’m on 200 MG of fluconazole a day plus clotrimazole troches.  The white patches have receded but my mouth is still sore and red.  My nose is a nightmare.  And I feel sick.  Just rotten run down dizzy thick headedly sick.

But it’s back to work today.  Because I haven’t been there long enough to be eligible for FMLA.  If I’m still feeling horrible as the day goes on, I’m calling my doc back to let him know.  This is a little unnerving.

Am I flu

Yup.  Since Sunday.  I have the flu.  Because someone came to my husband’s work sick with “a cold”.  He works with doctors, not all of them are MDs but a very large number of them are.  They should know the difference between a god damned cold and the god damned flu.  But no.  Also, I know that there are a lot of people who cannot take time off, e.g., they are stuck in jobs with no paid time and low wages.  That is NOT the case with the people my husband works with.  In fact, since most of them are associated with hospitals, they cannot do that side of work if they are showing flu-like symptoms.  In the past, docs and RNs with flu symptoms could come in and show off.  We’re still dealing with a city-wide “flu emergency” up here in Big Northeastern City.  Hospital ERs have been running over capacity for a while now.   So my guess is that one of these little stinkers was sick and decided that they could come to research work if not to clinical work because at research  work, they wouldn’t be run out of the building on a rail by someone from occupational health.  And so they did, and now we’re all sick.  Thanks a-hole!

Got a flu shot.  Didn’t work.  This is not surprising.  They are not 100%.  And my immune system also leaves something to be desired.  And I was sick with my own chronic sick crap the week before.  So I was not in good shape going into exposure to the bug.  Husband came down with it, when we still thought it was a cold, Friday night. Then we had blizzard, made soup, and I took care of him.  By Sunday, I was definitely sick.  By Monday, I was runing a fever and bed-ridden.  I finally got out yesterday and I still have a mightily sore throat, a cough that won’t quit, and a massive case of the dizzies.  But I don’t feel like dying so yay.  Thank god for chicken soup.  And for my husband, who was amazing throughout.

I have a rash on my soft palate and my tongue is swollen and sore, so I have an appointment with my primary care this afternoon.  “Is that normal after the flu?” I asked his nurses’ voicemail.  The one I like called back.  “No, never heard of that.  So, would you like to grace us with your presence tomorrow around 4:00?  and when I say ‘4:00’, you know I mean more like 5:00 and that you should call before you leave…”

I’ve missed a week of work, and I’m still technically too new to have access to FMLA protection so I have to hope that HR and Payroll don’t get on my case about this when I submit my February time.  This was no small source of consternation for me while I was dug in this week.  A week’s sick time, whooosh…gone.  Not like I’ll need it for anything, right?

And all because someone had to show off that s/he could solider on to work while sick.

 

Dig

Today is Mary Leakey’s birthday, my google doodle tells me.  I figured it out before I moused over it…I didn’t know what the dogs were doing in the picture, but I saw a woman kneeling in sand, human footprints, a trowel in hand, a toolbox by her side and I thought “oh, archeology”.

I used to want to be an archeologist, we’re talking when I was a little kid. I think it was influence and glamorized by Indiana Jones movies, but the desire was there earlier than that.  Was it the “In Search Of…” episodes we used to watch?  I was always drawn to antiquity, to early human societies and their remnants.  Also to poking around and wondering about the stories behind various “finds”.  A very young me digging in the dirt under a neighbor’s shrubs for god only knows what reason, I found a broken Snoopy necklace.  Why?  How did it get there?  Was it buried intentionally or did it drop from someone’s neck, broken and loose and into dirt that was soon to be disturbed?  I feel the same way about graffiti.  I don’t mean the stylized tags that have grown increasingly popular since the mid 80s.   I prefer the legible ones.  The stalls in the women’s room at my first college were full of this ledger of dramatic human behavior, stratified, cataloged, left in place for someone to try to follow the story…at least until the janitorial staff were summoned to slap up a fresh coat of paint.  One of my favorite books when I was studying anthropology was a book on ancient Roman culture that included excerpts from graffiti in various Roman cities.

I gave up on anthropology and archeology a long time ago.  I don’t miss pursuing the formal study of it.  It turned out that standing in a lab cleaning dirt off tiny little pieces of nail with a soft bristle toothbrush and a bucket of COLD water, then painting little tiny ID labels on said bits of metal is not a hell of a lot of fun.  But I am still drawn to antiquity, and to graffiti.  I still am fascinated by the notion of a record that is left and can be read and interpreted later, of a history that can be reconstructed and understood from the remains.  I very intentionally did not say “like” in those last few sentences.  Sometimes, fascination and like are not the same.  Doctors who study cancer can be fascinated by cellular pathology but don’t “like” it.  Just like I can find the development of civilizations and human society interesting without loving all elements of those civilizations and societies ( human sacrifice; institutionalized slavery, misogyny, and child exploitation – to name a few less likable human social trends which have been more widespread at various points in history).

Today I went through my medical records box because new GI doc needs records.  And I need new GI doc.  Yesterday, the EBS came back with a vengeance.   And so I started my dig.  A while ago, I put everything in order.  Medical records post lyme, post 3 laparoscopic surgery for endometriosis, post perplexing and disabling hip pain, post onset of chronic diarrhea with massive weight loss, post migraines going into overdrive.  There was a lot to put together and it sucked to read through the notes.  Oh the notes do you in.  I do not recommend reading them over.  Just shove them in a file and leave them there – a sealed tomb with hieroglyphs warning about dire consequences for those who dare disturb it.  This dig was complicated by the fact that I have had to raid my lovely, ordered record several times over the last few years.  A radiology report here that someone wants to see.  A set of labs there.  And although I always meant to, I didn’t always put things back well. I did at first, but as life got busy and we moved….three times since I wrote that post about sorting my medical record in June 2010…I just started raiding the binder then shoving things back on top of it.  And I accumulated new stuff that was never hole punched and filed under the right tab. Eventually, I think on the second to last move, I took the binders and what was not in the binders but on top of them and placed it all in a box.  The Box has been sitting upstairs at the place where we currently live, slowly but surely accumulating more stuff.  The Box is my site, and it is a mess.

Why put myself through this unearthing of things?  Well, if you were about to become my GI doctor, you might want to know that I have had several upper scopings since 2001 and 3 or 4 lower scopes since 2004 and I have records of all but the most recent, which are forthcoming.  All show “mild” inflammation in my stomach. Starting in 2004, all showed gastric polyps, which were determined to be benign.  All showed nothing special in the colon department, although the last two involved “inadequate prep”.  There are also several abdominal imaging reports, some of them ridiculously interpreted (worst ER visit ever, where they read me as having a normal uterus on the CT…except my uterus was removed 15 months prior to the CT) but at least establishing a baseline.  Oh and I got the CDs with the actual scans too.  Those are in there.  Labs, labs, and more labs.  OR reports from laps in 2002, 2007, 2012, and hysterectomy in 2011.  Nearly none of these things were done at or ordered through the BATH where new GI doc is, so that means nearly none of this is accessible to her.  It is up to me to get and bring in what is needed.  To sort, to sift, to get down on my knees and carefully peel apart the layers.  Gently lay aside my finds, grouped by type.  Into one pile go artifacts what may be relevant.  Everything tells a story, but what tells the story she needs?  Does she need the bone scan for my hip back in 2005?  Probably not.  Does she need the abdominal CT scan from 2007?  Yeah, maybe.  Will the growing pile of “relevant” overwhelm her?  Possibly.  Probably.

In gathering my artifacts for the new GI doc, I glance for a moment in the other binder, the often undisturbed one.  The cursed tomb.  On the first page is a note from a GI doctor who did not work out in Ye Olde New England Outback.  This is the one I was seeing during the massive weight loss that heralded the onset of chronic diarrhea.  My weight is recorded as 114 pounds on that page.  I am 5’5″ and apparently I “look anxious” and complain of diarrhea that the doctor describes as “intermittent” but then later says “occurs after eating”.  I remember how it was back then, this little artifact is enough to call it all to mind.  I ate, I was hungry. But everything I ate kicked off pain and intense bowel sounds/motion within 15 minutes and then a massive flushing out of my gut.  I couldn’t escape the toilet.  I went from 147 pounds to 114 in a few months.  Do I bring that?  The notes?  No.  I decide I don’t.  I want to present her with the facts, the tests and the numbers.  Not the interpretation of the facts.  I don’t trust that she will view them without a bias towards assuming the other doc was correct.  He was not, that was the doctor who intimated that I had an eating disorder and whose “treatment” consisted of threatening to give me an appetite stimulant although in his notes he indicates that I report no problems with my appetite, and an addictive pain med which he told me was not addictive (but which I recalled from my ex-husband as otherwise and looked up and yep, addictive – and it also turns out that it is contraindicated for patients who are emotionally unstable, which is what Ye Olde GI doc had clearly wanted to classify me as).

And so now I have a pile of what is relevant. I’m going to take it to work with me and scan it.  I had started doing that before but didn’t get very far but my god, I’m sick of maintaining this growing pile of reminders of the history of this illness.  I know it is useful but I am not impartial enough to want to take the time to care for this stuff.  I believe I could manage it better if it were digital, if I could zoom straight to what I want or what is needed without having to whistle my way past the scary sealed tombs, which I sealed for good reason, each time.  Eventually.  I promise.  For now, I’ll just work on putting together this particular exhibit and be done with it again for a while.

EBS

Enraged bowel syndrome.  Because mine is more than “irritable”.  It’s psychotic.

I spent most of yesterday hunched over and in pain with chills, nausea, and a massive inability to go.  Yes, a big change for me.  But not being able to “go” does not mean my gut didn’t want to go.  Oh it wanted to, but it just couldn’t get it together.  Times like this, I feel very much like what is happening is a lack of coordination.  It would fit with the rest of me, my overt and external motor skills leave a lot to be desired.  I walk into things, I have days where I can’t pick something up without knocking it about like a deranged, drunk juggler first.  So why should my gut be any different?  Why shouldn’t it sometimes just be like “whup, ooops, woah!”

I am exhausted from this.  Exhausted short term, I feel like I was in battle yesterday, I am so tired and achy from the muscle tension that comes with all that pain (I did try to relax, I’m not bad at putting the pain somewhere else for short periods, but only short periods, and colicky pain always does me in because you ride a wave, get past it, then lose your focus and when the next one comes you’re not ready for it).  Exhausted long term, as in so fed up with the evil nasty ways of my gut.

I believe today will be a low food day.  I’m having a lot of those.

So what set this off?  My money’s on migraine.  Migraines, and/or migraine meds, tend to give me stasis symptoms in my GI track.  The whole thing.  Nausea and indigestion up top, bloating and constipation down below.  Migraines and stress are the only things that will lock up my usually far too quick gut in a gridlock of pain.  So migraines last week from the whacky weather, hence migraine meds most days last week, plus some gut-meds since I had to be up and at meetings early a few days.  Then some stress because a young co-worker got bent out of shape by my manner (someone who’s very, er, sensitive…I’m not insensitive but I’m finding that I just don’t mix well with people who are femmy and insecure in a work situation – I’d like to work on that but truly, I have no idea where to start.  I think it would require a complete personality overhaul….).  And that’s that.  I tried drinking lots of water – all the meds I take are super drying – but I know there were a few days when I fell short.  So add that to the list of precipitating causes.  I don’t know how I didn’t break my teeth off from all the jaw clenching and tooth grinding I know I know I was doing, which is only going to add to the muscle tension in my face, head, and neck, which puts me in line for more migraines.

What a rotten cycle.

Husband was, as usual, amazing.  He does have the unfortunately tendency to get very very quiet when I feel that bad.  It’s not a terrible thing, I mean, it’s not like I’m up for conversations.  Grunting is about the most vocalization I can muster in those situations.  However, I wouldn’t mind an occasional word of encouragement.  Boy, I don’t ask for much, do I?  The word of encouragement is more so I know he’s not freaking out inside.  He’s a black box when I get acutely ill and when I have the clarity of mind to do so, I worry that the silence is fear.  And I don’t like unaddressed fear, I’ve lost partners to that before.  But, last night was not the time to talk about that.  We will later, when I’m more than a day past the bad and it’s not as acute a memory.