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).

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but if you try sometimes…you get what you need

I didn’t go to work yesterday.  I had a horrible time sleeping Thursday night – it felt more like a series of naps than actual sleep.  So I woke up seeing spots and thought “eeek!  Migraine!”  and since it wasn’t going to be a busy day at work and since my new boss had said he’d be ok with me working from home now and then if I wasn’t well enough to come in but was well enough to do some work (eeep!), AND since I had a bunch of labs to get done and more to schedule, I decided to take Friday as a medical day.  It would give me a chance to get some medical stuff done and I could rest too, to make up for Thursday night’s failure.

My day, however, was a series of confounds.  It started with the donut shop.

The donut shop is at the end of my street, which placement practically requires that I stop there for an iced coffee when leaving the house.  Sometimes they are slow, but my body demands its daily AM coffee ration.  On a possible migraine day, it demands it vehemently.  Yesterday they were slow.  Finally, just when I rolled up to the order/menu board, my cell phone rang.  My PCP’s office.  A few minutes later, coffee in hand, I played back the message in the donut shop parking lot.  The contents were this:  Dr. GI will see you at B.A.T.H. on August 30th.  Dr. ENT can’t see you until October 4th.  He’s away for three weeks in September.  This is a bit of a blow.  Here’s an approximation of my donut shop parking lot internal dialog:

I’m used to delays in progression of assessments, but October?  Really?  And I know that at the ENT appointment, the recommendation might be to wait.  I know this because I’ve been through these assessment steps on other matters.  I imagine how I would say “but guys, it’s been 4 months since the ultrasound already…can’t we just skip the mandatory ‘let’s wait and see’ period?”.  Or maybe the ENT doc might recommend a biopsy, but that would take at least a week to get and then several more to follow up on and now we’re moving into November and….jeezus, November?  Plus, my internal dialog continues, October is a super busy time for me at work!  I don’t need to add this shit to it.  God damn, why can’t we just at least move on to the next step now, when absences for medical crap won’t be as devastating?  God fucking damn it.  I am feeling the deep dark despair lurking around the edges here.  But there is nothing I can do about it just then. I resolve to call Dr. ENT’s office when I get home to ask if they have a cancellation list and in the meantime, I try to tuck away the concern and pull away from the deep dark despair so I can get on with doing what I wanted to do today. And off to the lab I go….

Where I find a room full of people.  When it’s my turn up, I realize that the woman checking me in is in training.  Ah.  So that takes a LONG time.  I eventually go in back and am shown to the chair.  I explain briefly that NO ONE wants me in the high-chair for the blood draw because NO ONE likes to have to get me up off the floor.  No, it doesn’t happen every time but it does happen, so let’s stick with the table.  On the table, I wait and I hear the new tech trying and failing to get blood from another patient.  Oops, oh, darn it, now don’t move, really, don’t move.  Nope.  You’re gonna have a bruise there.  

Now it’s my turn.  I show her my arms and explain I just had an IV in one and a blood draw in the other.  “Why didn’t they add these to that draw?” she asks.  “Well…I had called a while back and reminded them I had weekly blood draws right now and suggested if my primary wanted any thyroid function stuff that he could maybe add them on to those but I didn’t hear back from them and he ended up ordering them yesterday, after my last weekly blood draw.”  I don’t add “and I didn’t follow up on my phone call from a while back because I start worrying that I’ll be seen as (and treated like) a royal pain in the ass when I do things like that”.  I should have followed up because my arms are a mess today.  She doesn’t get it on my historically “good” site, fiddles around, then yay, blood….and then my vein does that thing that feels like a cell phone on vibrate, and the tech makes a bad news sound, then tells me “it stopped”, then starts fiddling around again.

At this point, my hands start sweating.  Sign #1 of an impending faint.  I feel bad for the woman but I say “I think we need to stop for a minute, my hands are sweaty.”

And then she does possibly the single worst thing – next to continuing to fiddle – that she could have done.  She takes the needle out.  I didn’t realize just how bad this was until a moment later when she told me that although the blood had stopped for a second, it did start up again.  Are you kidding me?!  I consider that the next time I am in this situation, maybe I shouldn’t worry so much about sounding peevish and say more specifically “If you need to dig around more, you’re going to have to stop and give me a break.”  This time, I had consciously NOT said it like that because I was trying to be nice to someone who was having what looked like a shit day.  I can’t claim fully altruistic motivations here, I have a general rule that you don’t want to piss off the person into whose hands (literally) your body and well-being will be placed.

Finally, after much waiting and much answering to questions about how I’m feeling, I get drawn off a vein no one’s ever used and which hurt like a mother.  And then for the marching orders…what to put in what cup (oh yes, there will be cups and collections).  The waiting room, which has emptied and filled up again while I was not passing out on the table, is full of grumbly people, lead by one particularly mouthy woman who says to every new person who comes in the door variations on “We’ve been waiting for an HOUR!”

And then I’m off, finally, and thinking about what to say when I call Dr. ENT’s office.  And in doing so, I find I’m reflecting on this whole experience in the car and realizing that there is a common theme here – it’s about trying to find the path between being that whiny woman in the waiting room and being the passive patient who just lets stupid shit happen (or who lets important shit fail to happen) because she doesn’t want to ruffle any feathers.  I do not want to be either.  I don’t like bullies and don’t want to be one but also, I have a special personal contempt for the creampuff/doormat behavior.  Sure, my reasons for not wanting to ruffle feathers have a practical flavor and are not just about wanting to be LIKED by everyone but I cringe at even coming close to being an example of that absurdly dysfunctional feminine stereotype.

When I get home, I call Dr. ENT.  “We don’t have a cancellation list,” the woman who answers the phone tells me.  “You can call every day to see if there are cancellations.”  This is annoying….and this is exactly where I sometimes go wrong.  Ok, here goes.  Resolving to push on in a firm but not dickish way, I say “Does he have any cancellations for today?”  “No, he’s not even in this office today.”  Ah…contrastive stress on “this office“!   I ask “What office is he in today?”

“East Buttf–k, he’s there every Thursday and Friday…”

“Do you think he might have an earlier appointment in East Buttf–k?”

She gives me the East Buttf–k number, explaining that they don’t book for that office.  I call, and YES, I get an appointment for August 18th!  Take that October!  Take that confounded day!  I’ll gladly drive all the way out to East Buttf–k to get seen next week.  Hot damn!  Where is East Buttf–k anyhow?  I look it up on google maps while spelling my full name and giving insurance info to the woman in the East Buttf–k office.  It’s 10 miles down the road from the October office.  No shit.  Well, I got what I needed after all, and it only took some self reflection and the discipline not to sway too far into dickishness or creampuffery.

Feeling immensely self satisfied, I call the October office back to cancel and…..I am told that someone JUST cancelled an appointment for August 16th at the October office.   They ask if I want it.  Although taking it would mean being that patient who made all this fuss about what might just turn out to be totally normal, not hot, not cancerous thyroid nodules, I really want to say “YES”.

So….did I take it?

following up

Saw my primary care doc today.  We followed up.  Mostly on thyroid but I feel I should mention things like having lost 10 lbs since early July and that the overheating/flushing has ramped up again.  And that I won’t see the fussy little GI doc again.

A good appointment.  I wish I could access my labs online (he’s working on that) because it would save him time.  Too many times in an appointment, he says “oh did we get that lab and what was it” and starts the search through my now shockingly large record.  It adds onto an already lengthy appointment and it makes me feel bad.  I would look this shit up in advance and bring a table.  Possibly a chart even.  Like I said, he’s working on it.  He did what he could on his end, now Quest just needs to play nice online and let me see the things.  He told one of the nurses “hey I think I figured out how to let patients see their results online!” all excitedly.  She countered with “Yeah, I’m not sure we should have that for everyone…there are some people who would call if they were one hundreth of a point high or low,”  I piped up with “I promise I won’t do that.” She said “no, I wasn’t thinking of you.  Some people just don’t have good reasoning skills…”

I suppose not.

Anyhow, here’s a summary of Dr. Wellintentioned’s note (which he sends patients away with, which I think is a fantastic idea):

text from doctor's summary of visit, labs. If you want the specifics, please write in my comment section and I will email you with the text.

I know what about 3/4 of those labs are…the rest? No idea.

I had wanted to ask him about ADA accommodation forms, but I figured we were running late anyhow and this is probably something I can ask the nurse (based on my experiences with FMLA for surgery).  So I asked on my way out.  Here’s how I put it:

“I’m thinking of asking for some accommodations at work.  It’s nothing major, and I wouldn’t need to ask for them if they weren’t be kind of jerks about things.  But I looked at the form they want the doctor to fill out and the are awful.  Is there anything I can do to make the process easier on you guys?”  She said “Yes.  Bring two forms.  One, you should fill out.  The other, leave blank.  We can look over the filled out one, see what you need and asked for and if we agree with it.”

This is incredibly sensible and I am glad I asked.

The only difficult part of my appointment, aside from feeling like I am always taking up way too much of this man’s time, was the part where I tried to get a sense of how to talk to Dr. ENT.  See, I’m a little gun shy after the fussy GI doc and his inquisitor bed-side manner.  I don’t want another dismissal, especially not of suspicious lumps in my thyroid which I personally am a bit uneasy about.  I am not someone who thinks “oh my god something’s wrong, I must have CANCER”.  I’m really not. In fact, if this did turn out to be cancer I’d be shocked.  I’ve been sort of figuring if it turned out to be anything diagnosable, it would be autoimmune and/or endocrine (of the itis, not oma) fuckery since that shit runs in my family and I know it can be tricky.  So back to cancer and ENT and asking about talking to him.  It can be an awkward thing to say to a nice doctor “but they aren’t all like you, some of them, who may be your friends or at least respected colleagues, are assholes,”  especially when he’s the one who referred you to said asshole.  But we got through it, and I’m glad we talked about it.

I feel like I should send him and his staff something nice, but what do you send?  Flowers?  “Thanks for being amazing” seems diminished and trite when folded neatly into a card.  How amazing this practice is should be spelled out in sky writing or sung by a choir or something.

more waiting

This time on the hospital to set up the outpatient IV fluid treatments and weekly blood draws.  And boy could I use the fluids.  BP today is back down, 86/56.  And I feel it.

I had my ultrasound yesterday and then neuro appointment.  Too much running around, not enough food or fluids.  I tried, but I guess I fail in the keeping myself hydrated front.  And the extra diarrhea yesterday AM doesn’t help.  No, not one bit.  (tmi?  guess what kids, it’s a health related blog and I have GI problems).  Ultrasound was quick, so quick that afterwards I went to talk to the registration people about the IV order my PCP’s office said they sent over.  When I had first come in to register for the ultrasound, I was greeted by efficient people who signed me in and then called me up to register me.  When I came back, that was not the case.  One woman was staffing the desk…a woman whom I dubbed “Bumbles McJudy“.  Bumbles was in a state because there were TWO (Horrors!) people at the desk patiently waiting for her attention.  I explained what I was looking for when she called on me.  Twice, no twice and a half actually because after prompting me to explain it a third time she cut in with a frantic “Ok ok ok, I, um, ok, just have an um, have a seat and I’ll be with you in a minute.”  20 minutes and a growing line of “have a seat” people later, I got up and said “I’ll just call later,” and left.  But then later was the neuro appointment and then it was too late so now I will call on Monday and I hope have time to set up an IV appointment for some time next week.

The neuro appointment went ok.  Nothing major.  He asked about whether I called my PCP about the blood pressure and did they see me right away.  I told him yes, I called and they saw me as soon as they could.  He was relieved “because that was alarming” in reference to the hypotension.  I told him I usually run a bit low but not this low and showed off my lovely forearm bruise from where I tripped on my own feet and fell into a door frame.  “That really bothers me.  What did he think it was?” the neuro asked (“he” being the PCP).  “Um…’severe orthostatic hypotension, spontaneous dehydration, intermittent diarrhea’.” I said recalling the wording on the IV order.  “But WHY?” he continued.  The answer I wanted to give was “fuck if I know” but I use radio-protocol in this guy’s office since he’s sort of religious and I figure he probably would react poorly to my day to day potty-mouthed speech.  “No clue.” I said.  We talked about the diarrhea and CFS and fibro for a bit.  Then on to the MRI.  “Had an ultrasound of the thyroid, PCP ordered it” I told him when he mentioned the nodules. “Good, it’s probably nothing, usually these things are, but I’m glad he ordered it.”  Then on to the spinal stuff.  Stenosis at the nerve root at C5/C6, plus my EMG from last year.  “It looks like a healed injury” he said and asked “Did you ever hurt your neck?”  Nope.  We went through a very thorough history of Dyspatient’s possible neck/upper body traumas.  Not much.  “Uh, my sister threw me off a bunk bed when we were little and I hit the floor flat on my back and it knocked the wind out of me…but that’s really all I can remember.  I tend to land on my knees when I fall.”  He made a joke about me landing like a cat, and asked how old I was for the bunk bed wrestling match….too young he said when I told him I was probably about 7 or 8.  “Any shocklike feelings when you turn your head or put your head to your chest?”  “Any pain when you strain, cough, bear down?”  No, not that I can remember when the neck pain is going (which it wasn’t yesterday)… “Yeah but you minimize” he told me.

Stop the presses.  A doctor actually said I MINIMIZE.  Not catastrophize.  Minimize.  I’m going to ask my therapist about this, see if she agrees.  I know how I feel inside but I’m interested in knowing what my reactions come across like.  I’ve gotten very conflicting messages, although in the last 8 years and in medical contexts, usually I am told or get the impression that I’m seen as OVER-reacting/making mountains out of molehills/NOT minimizing.

Neuro doc and I ended with him saying I should really get massage therapy, asking about my medication use since we last met, and telling me that he could do another EMG but that he doesn’t think it’s really necessary right now but that I should let him know if I have more weakness or tingling in the arms.  Ok.

I’m alright with this.  He made sure to tell me that if I needed to see him, I should call.  He also recommended a GI doctor who wasn’t a dumbfuck (I had related some of my experience with the last guy to him, and quite validatingly, he was clearly annoyed with the guy’s approach.  “Did you know that there was a recent study that found a very large number of doctors have Asperger’s?” he asked.  I laughed.)  I didn’t feel like the neuro was pushing me out or incorrectly declaring me all better, or closing the door on my following up with him if I needed to for the migraines or neck pain or arm symptoms (which I still think go more with the migraines than not).  Amazing how much difference the approach makes, doesn’t it?  I mean, the neuro pretty much said “Yeah, I don’t know what’s going on here” but because he didn’t then suggest I was nuts or faking and didn’t wipe his hands of me, I can handle it.  And I know that I can call him if I need him.

And Monday, I will start the next round of phone calls and proddings of doctors, nurses, registrations clerks and whatnot.  And in the meantime, apparently I will just keep drinking the pedialyte (yuck) and gatorade.

correction

Not blob.  Blobs, plural.  On my thyroid, right lobe.

So, ultrasound of the thyroid coming up.  No needles, not right yet at least I hope.

And IVs for the hypotension.  I’m happy for that.

There was some other stuff on the MRI too, stenosis something something…I’ll let the neurologist go over that with me on Friday.

Now if all this shit turns out to be thyroidy, does the neuro or the primary care get the credit?  Neuro ordered the MRI of my neck, so I’m thinking he might.  Although I know that was NOT what he was looking for when he ordered it.

The blob

Because they felt bad at the MRI place for not processing my request for a copy of my brain MRI from last year, they were nice enough to offer to put my neck images on too. And so I left Wednesday with unread images from that days MRI.

Yes, I looked. And yes, I know that’s not a great idea, because I have no illusions of being able to read films. In fact, I’ve looked at some stuff on the Internet and if it weren’t for those helpful little arrows and whatnot, I’d have no idea what I was looking at. I mean, sometimes it’s obvious…sometimes you see a blob, something that stands out from an otherwise homogenous or uniform background.

Like on mine.

Um…what’s that blob? I’m fairly certain it’s on my thyroid gland, right side, upper. I can see it in all aspects images (coronal, axial, and sagittal). Not big. 14 mm was the largest measurement in the sagittal plane. So, uh. What the hell?