weighing in

I had lost ten pounds between late February and early May.  This isn’t new, thanks to my truculent intestine, from September 2004 to March 2005, I lost 30 pounds while eating nearly everything in sight.  Now that it’s better controlled, I can usually stay around my normal weight, sometimes losing a bit if I’ve had nausea and abdominal pain which makes it harder to eat my usual large amount of food to make up for the loss on the other end.

However, this spring – despite having a very good appetite, I lost a lot.  I called my GI doctor, thinking I’d try to move up my follow up appointment to a little sooner than June 10.  Whoops, no I didn’t even have an appointment on June 10!  So they gave me the first one they had, June 3, and increased my meds.

So this week, I’m premenstrual and tremendously bloated, my appetite’s been insane (I feel dizzy and weak and nauseous if I don’t eat about every two hours), and the gut meds – while not working to slow things down fully every day – have helped.  The end result is I’m back up about 8 pounds.  So I’m going to go in there and she’s going to pronounce me “CURED!”  Ta da!

I probably should just get all that sarcasm out here, now, before the appointment.

Gah.  Anyhow, I need to push on with her though.  The symptoms were bad enough that I was *very* late for work about 6 times in that weight loss period.  This needs to stop.  And I know it might not stop.  I know we could look and look and not find a reason; or look and look and find a reason but not a cure or even a sure fire treatment.  I don’t love those outcomes, but I think I can accept them.  I know I can accept them a whole lot better than I can accept simply not looking.

As I write this, I realize though that there’s no clear reason, a priori-ly speaking, why not looking should trouble me so.  I think it has to do with this:  I have a fundamental problem with wallowing in a shitty situation – with having troubles which lead to complaint, need for accommodations, what seem like extreme limitations.  I guess I’d say I have a problem with “malingering”.  I big, deep problem with it.  Now, what I don’t have a problem with is disability due to circumstances that just can’t be fixed or modified sufficiently to allow for approaching normal function.  Put those together and it means that I absolutely require that all reasonable avenues be exhausted before I am ready to throw my hands up and say “fine.  I give up.  I’m fucked.  Now I can get to work on guiltlessly rearranging my entire life to accommodate this fuckery.”

I think a key element in here is “guiltlessly”.  And the recognition that my entire life includes the people I interact with – obviously the more frequent and/or intimate the interaction, the more need there will be for rearranging and accommodation.  I’m working on this in the meantime.  I don’t assume a diagnosis, treatment, or cure is forthcoming for any of the more debilitating crap.  But I know that I simply will not feel comfortable entirely giving in unless I truly feel that no stone has been left unturned.  To continue with the masonry metaphor, I’m not insisting that a doctor dig out a whole new quarry here – just that s/he use the reasonable tests and tools (which I assume includes their god damned brains and my very thorough medical records) to chip away at what we’ve got.

not tonight

Listening to my husband talk to his sister about visiting.   Who will or should visit whom and when.  Plans, or at least the starts of them.  My name is mentioned “Gotta get her out to X to visit”.  X is on the other side of the country.  More plans.  “Group vacation” comes up.  Will I be part of it?  Probably not.  I exclude myself, always.  I am not excluded, to the contrary, I am often faced with needing to explain (usually through my husband) why inclusion in these plans is not possible for me.

I used to like traveling.  I especially liked traveling by plane and doing so when I had a bit of money to spend on things like coffee when I wanted it, beer at the airport bar if I felt so inclined, etc.  Traveling with no money was a little less relaxing, money may not buy you happiness but it will buy you a cozy seat and a beverage out of the fray.  What I noticed the most about traveling without much money was just that you had to be ready to do things like run a little faster, wait a little longer, and make the package of graham crackers tucked in the purse last a little more time.

None of this is an option now.  I suspect if I had not just some money but a good deal of it, I could afford the sorts of luxuries that would make traveling more possible for me.  I’m not sure, but I suspect it.  E.g. a limo to and from the airport.  And we’re not talking some minivan service full of people and bags…I mean a luxury car where I can stretch out, apply cold compresses, and drink herbal tea if I’m so inclined.  Massages, good food, easy access to bathrooms, etc.  I bet having some extra cash to throw around would help make all of those things possible, which would in turn make travel more possible.  While I’m by no means as broke as I have been at other times in my life, I do not currently have limo with herbal tea level money.

And moreover, I have an old, infirm cat.  We have.  Well, my cat of 15 years, his of about 5.  And by infirm, I mean the cat gets a pill every day, sometimes needs cajoling to eat, and never makes it to the box for #2.  So even if I could get my reliably unreliable, high needs body squared away to travel, I’m not even remotely confident that I could find someone to watch the cat.

So what do I do when I hear my husband’s prolonged conversation with the sibling who is the least understanding about these practical limitations?  Do I take a tactful, respectful approach and not say anything?  Do I wait until later and express how upset this constant “why can’t she travel” wrangling makes me?  Or do I say something as nasty and mean as this sibling’s continuing disregard feels to me?

On good days, one or two.  Tonight, not so much.

You can do it!

I find that I have taken to coaching my intestine.  Only when I’m at home.  Like today.  It’s a vacation day….much needed after a busy early May at work.  And I want to go out and do stuff.  It’s gorgeous.  Sunny, high of 70.  But my intestine, which was oh so very forthcoming earlier this week, has decided to dig in its heels (there’s an interesting metaphorical image) and be recalcitrant.  I’ll get out and then it’ll decide to wake up and start it’s daily work out – something like the Rocky training montage except it involves me running to the bathroom every 10 minutes for about 1.5 hours.  For now, it’s basically sulking, lolling about like a sleepy, cranky toddler.

I have an appointment with my GI doc next week.  This is the big “will you or won’t you” talk.  As in “Will you do the capsule endoscopy you said you’d do in the Fall or won’t you?”  Her nurse told me that she’d rather do another colonoscopy (she didn’t do the first one, someone else did but it was fine) because she can biopsy in a colonoscopy.  I understand that.  But *no one* has taken a look in my small intestine.  So I deal with the diagnosis of exclusion (IBS) without having excluded a small bowel diagnosis.

This would be more acceptable except that (a) I’m still malnourished and the meds work for a while then seem to wear off.  We then increase the meds which works for a while, then wear off…etc.  and (b) she said she was interested in the pill camera study last Fall and even had me do a CT scan to make sure there were no strictures in advance of it.  There were none.  So….what I want to know from her is why did she put me through that much radiation and nauseating contrast (not to mention the expense) if only to decide 6 months later that no, we won’t do the capsule study.

Actually, although I do want to know that, I suspect framing it like that will just sour our relationship.  So I will probably ask what the risks vs. benefits of a traditional colonoscopy are compared to those of a capsule endoscopy.  And if she’s still reluctant to let go of the colonoscopy, I may go looking for a new GI doctor.  I’m pretty sure she could be convinced to go the capsule route, but if she agrees only to humor me and is still set against it, I think I should find someone else because I’d worry that she’d develop some kind of negative attitude towards me as a result of this wrangling.  And I have a low tolerance for the sorts of negative attitudes doctors get in situations like that.  I’m very sensitive to them (ok, I’m basically hypervigilant about it) and I have yet to find a good way to handle the bad feelings they elicit in me.

Let me say for the record that I don’t want to go to a new GI.  I’m already changing primaries and spent February and March looking for a gynecologist.  Going through the whole new doctor thing sucks.  However, I did do some research and there are two folks at one of the BATHs who specialize in diarrhea and GI/women’s health issues.  So there are some options perhaps.

Pt. 2 Uterus?

The continuing tale of coordinating my medical care wrt a gynecologist who doesn’t suck or freak me out.

I should backtrack a bit here.  In early March 2009, when I was still living in the NE outback, I started feeling as shitty as I felt when I had the acute Lyme infection in 2002 – 2003 (oh yeah, btw, I had lyme.  You should read the “About Me” page if you haven’t already).  I’ve not felt well since having Lyme, but I had not felt that bad that consistently and enduringly other than when I caught the flu in 2004.  After a few months of some spectacularly failed attempts to either work this up or at least address the symptoms with my last outback primary care and her wretched PA, I moved up here in July and had to start all over.

And I found that I was sick of starting over, sick of looking.  I was worried about work – about being sick at work, about missing work because I was sick, and also about missing work because I had medical appointments.  The only one I had any control over at all was the medical appointments.  And so that is the one I decided to say “fuck it” on.  I did pick a new primary, she isn’t great.  She, like everyone before her, ran a shitload of blood tests.  Actually, she only ran a subset of them, so a small shitload I suppose.  They came back (mostly) within normal limits except for showing some signs of malnutrition.  She burned out FAST – not with “get the hell out of my office you crazy lady” attitude.  She was more likely to say “oh I don’t know what else to do”, and then schedule a random x-ray or sign me up to have the wax violently blown out of my ears by some unfortunate medical assistant.  On follow up, I was suddenly cured of everything.  Or at least, this was how she acted.  When I mentioned something indicated that I wasn’t, she seemed to deflate in front of me.  Cue another round of pointless x-ray, cbc, and liver function tests.

In the meantime, since May of 2009, I had been recording my symptoms.  The symptoms had seemed to ebb and flow on a somewhat periodic basis.  In June, I added in a general rating of activity and stress (emotional) for the day.  Was it my period?  Nah.  But it was my post period.  \Turns out, no matter what else was up physically, emotionally, practically in my life, I felt MUCH worse post menstrually.  This was a little hard to tell at first because with the hormone releasing IUD (mirena) in place,  my periods were nearly non-existent.  I recorded and counted and it really did seem that although I sometimes had spikes of feeling like wrung out crap at different times of the month, those tended to go with higher activity/stress days.  What remained was the post menstrual crash.

The mirena stopped being so helpful.  In the Fall of 09, I started having neuro symptoms I tend to associate wtih migraines with very disruptive frequency.  I had been struggling with ovarian cysts since September 2007,  just three months after the mirena went in (which the mirena “info for providers”) lists as a possible side effect but which a new and god awful PA at the outback doc’s office said she’d never heard of.  Then I started having pain pain pain at all times of the month.  Pain sitting down, pain standing up, pain pooping, pain having sex.  And the bowel symptoms kicked up again bad in late August 2009.  I lost weight.  I would have stuck out the ovarian cysts but not all of this.  Vertigo and general dysequilibrium became a very common part of my post menstrual crash.

I decied.  Time to go.  Take the mirena out.  Get a hysterectomy, maybe leave an ovary and if the endo symptoms persist, we can just nip in and take that little fucker out too.

I thought this was a good plan.  The first GYN I saw (Feb 2010) did too.  Except she was awful.

Pt. 1 Uterus?

They don’t even know us!

(somewhat continued from Gynecological diagnosis III)

I mentioned before that I’m having a hysterectomy for the endo and adenomyosis.  It was a long walk to get there, and I’m not even quite there yet but as a destination, it’s been added to my itinerary, so to speak.

I had a very good doctor that I saw for gynecological problems where I used to live, down in the New England outback.  There were only a few things good about living down there:   the GYN, the dentist, and the vet were among them.  Since moving in July 2009, I miss them all.

The GYN I first had in the New England outback was not good (2002).  A general service OB/GYN, meaning more OB than GYN.  She did my first laparoscopy and left some endo sites because she didn’t feel comfortable removing them.  Eh, what are you gonna do?  I guess I prefer that to her screwing up my ureter.  But what I’d have really preferred was a good gynecologist for that surgery because I came away from it knowing that it was likely I’d need another operation.

When the OB/GYN left her practice (there was a lot of that in the New England outback), my options were to see a rather far away baby doctor who my leaving OB/GYN had transfered her patients to or to find one on my own.  I opted for the latter.  I asked around, did some research, and found a guy who had become an endo specialist by way of infertility.  Not to say we didn’t have disagreements or some treatments that sucked.  He was far away too.  But he was a good doctor and a decent guy.  With the exception of his receptionist, his staff were superb.  I loved the NP and miss the hell out of her.

In July of 2009, I moved up here to a bustling New England hub for a job.  I needed to find a new GYN.  Shouldn’t be a problem, right?  I mean, you can’t throw a stick up here without hitting whole diverse populations of doctors – veteran practitioners, specialty clinics, fresh faced newbies just done with fellowships and whatnot.  But it turns out looking was much more difficult this past year.  Aside from the issue of a larger search space,  I don’t have my network of endo folks up here – some of my friends in grad school had significant gynecological problems and were unbelievably helpful in my search in the outback.  But up here I don’t know too many people really well anymore.  I asked some old friends who grew up in this city for their recommendations.  Most were healthy enough to simply suggest Dr. So and So, “a very nice gynecologist who delivered all my babies”.  The few who had gynecological complaints all insisted pretty much anyone at this one Big Ass Teaching Hospital would be excellent.  That’s where all of them had surgery.

It probably didn’t help my search abilities that I was working full time at a brand new job, i.e., I had less time to sit at the computer researching this stuff.  And finally, I have a more restrictive plan now – I need a referal for any damned thing.  So I was receptive when in August 09, my then new (soon to be former) primary care suggested a practice in her group.  I looked them all up to see who was the least baby-doctor-ish and found one.  Minimally invasive surgery, good.  Affiliated with two good hospitals, one of which was the BATH my friends had suggested.  Also good.  I noted her name and then I put it off  because by October, I was in a “no more doctors!” mood and the GYN stuff was not at its worst.

Well well (not not)

Here I am again.  Having taken a hiatus to find a real job in a really bad job market, I’m back.  I’m working full time – sometimes a 40 hour week, sometimes less, sometimes more.  My boss is insane (mantra is “she’s only interim….she’s only interim”) and had, within my first 6 months at work told me that I “look sick” and that I was “making myself sick”.  Fantastic.  Some months later, she was diagnosed with uterine cancer.

Before I go on from that, let me just say, this is going to be one of those times.  One of those “oh Dyspatient is really bitter.  How mean!”   I have to preface (further) by saying that I am not proud of this.

When my crazy boss – who has punished me by changing my sign in/sign out procedures because I had the nerve to advocate for restroom and food breaks at work; who told me that the other person who had my job just worked 12 hour days to cover what is an obvious and legal liability risking staffing shortfall; who made those disparaging remarks about me being sick (I didn’t bring it up, I got sick at work  prior to restroom and lunch coverage arrangements being in place and had to go to the ER) – announced to the staff that she had been diagnosed with uterine cancer, I did experience some moments of schadenfreude.

Yes, I’m a horrible person.  Yep.

Let’s see…I tried to catch up all that can be quickly summed up in my “About Me/About This Blog” section.  Some doctor stuff.  I’m living closer to a real city with big research hospitals.  Unfortunately, those hospitals seem to have a paucity of primary cares and my insurance won’t accept “rotating resident” from a clinic as a primary.  I had picked one who was local and fit a few of my preference parameters when I first moved up here – and I mean first, because while cleaning a glass and metal lamp shade in the days of unpacking post-move, I massively cut my finger.  It bled and bled and bled some more….finally after walking around with it wrapped in about a whole role of gauze, I went to change the dressing and it was still very actively bleeding.  So off to the hospital, which was covered by my old insurance with a big fat co-pay.  And then either back to the hospital some days later to have the stitches out (and another $50-otmy) or find a doctor who was in network for my NEW insurance (lucky me, I had insurance overlap!) who would take them out for a mere $15.

So I have this doctor now.  She’s a nice person I think, but not a great doctor.  She might be an ok doctor.  I can’t judge in those areas anymore.  I can judge shitty and great, but the middle ground is a place I just don’t dwell.  I tend to bring out the best or worst in them and I don’t think it’s just my affect.  How a doctor deals with someone with what is, unfortunately, a growing list of symptoms without identifiable causes (at least without primary causes) tends to be either really great or really bad.  And believe me, I’m pretty flexible on “Great”.  I’ll take compassionate, intellectually curious, thorough, advocating, educating, enduring, and with strong follow through even if there is no diagnosis at the end of it. Hear that doctors?  You don’t need to fix me!  I’d love it if you did but honestly, I’ll take helping me just get through the day to day without letting the ego threat of unknown causes and new symptoms turn you mean or dismissive.

Current primary has become dismissive.  She blew in and (tried to blow) out of that room like a whirlwind. I came in with a list of things to talk about – I knew I had this follow up scheduled so things that were problematic but not urgent, I just put on the list but I got to exactly one thing on it before I gave up on calling her back from the door. Truly, it was clear that she didn’t even read her own note for why I was there for the follow up she’d told me to schedule.  I left there feeling terrible.  And feeling very lucky to have gotten into therapy with a good psychologist, because I left with what I call the deep dark despair thoughts (D.D.D.).  So now I’ve got an appointment set up with another doctor.  Internal medicine/Infectious disease certified, good patient reviews, not as close as the one I’m leaving but if he’s good it’s worth it.  We’ll see.