Ready, set, move!

All moved in!  I’m writing this post on an iPad, and exercise in various sorts of frustration so it’ll be brief.

waiting to hear about the new job – interview was great.  Work accommodations are progressing….slowly!  I may be changing my schedule so I don’t have to be in so early.  I think it may help with the gut stuff at least.  And speaking of gut stuff, I think I identified a culprit in my worsening symptoms.  Nondairy creamer.  I switched to rice milk and so far, doing better.  We will see how it plays out.  I think I will be charging my docs if it turns out that this was it, or a big part of it.  ;p

no time!

I haven’t posted in a while – lots to do and so little time.  Work is busy, but it’s a good busy that I like.  Plus, most of the more annoying people are not around now that summer has officially started.  They all just take off, like migratory birds.

Two bits of news.

  • I saw the allergist at B.A.T.H. and he seemed ok.  He agreed that I should figure out what metals I am allergic to, and seemed a bit stunned that I had never had allergy testing before despite all the odd rash/swelling-reactions I’ve had in my life.  This post really helped me in presenting my history – glad I took the time to write it all out.  He didn’t seem to think that I have classic food allergy symptoms, missing the throat closing ones and I hardly ever wheeze.  But a nickel allergy is a good thing to rule out for me – sad that so many foods on the nickel free diet are ones I love.
  • I have an interview!  The phone interview went well, so I’m going in for a day of interviews.  The recruiter told me to plan to be there for five hours.  Holy cow.  Well, here’s hoping there is ubiquitous air conditioning and no awkward “let’s take the candidate out to lunch” moments.

Moving next week, and having my big chat with HR at my current job.  Still editing that EEOC complaint, depending on how that meeting goes I may be adding a bit more to it.  One of the big drawbacks to filing a complaint has been knowing that I’d deal with underhanded retaliation at work, so how great would it be if I could leave this job and file the complaint?  A big relief, for sure.  I’d feel a lot better about making the complaint if I didn’t have to worry about on the job fall out.

changes

Housing:

We found an apartment.  It’s half a house.  We’re moving the first weekend in June.

Pros:

  • It’s in the same town as my current job (see also “cons”).
  • We don’t have to spend all our free time and energy hunting for and looking at rentals.
  • We can start packing (see also “cons”).
  • It’s got 1 and 1/2 bathrooms.
  • Washer/dryer hook up.
  • Basement stairs are easier to navigate than our current ones.
  • Looks like a quiet street.
  • Cheaper than a lot of what we were seeing for same size/features in our current city.

Cons:

  • The town it’s in makes it a bit worse of a commute for my husband.
  • If I get a new job in the Big City, then it will also be a worse commute for me (I just heard on Thursday that my boss may be stepping down, which means I am more motivated to get a job elsewhere).
  • It’s owner occupied.
  • They have a dog.
  • Time to start packing!

 

Job

I have a phone interview for a new job, this is the one I mentioned I applied for.  It’s a brand new job, i.e. the job didn’t exist before.  My hope is that it is a good fit and that I get it because work is just total shit:  My “new” boss just told me he may have to step down (long story but the short version is he got a good offer to do something that our employer is unable to fully support because they just suck).  So this means possibly a newer boss, or worse, a new old boss.  Holy shit that is just a nightmare scenario.  I’ve tried to reach out to a coworker who is in a leadership position at work – I had thought she and I were close to friends, we talk about personal stuff together at work, we’ve had some contact outside of work, and we seem to get along well.  But I’ve tried to get a hold of her, hoping to get some more details about whether it seemed likely that old/new boss would be stepping down and what the word was on who might be stepping up, and she’s not getting back to me.  This concerns me, quite a lot in fact.  I’m hoping that she’s just busy but I’m starting to feel a little like she’s avoiding me.

 

Health

My gut’s a mess.  It has been on a downward slide since January at least but the trend picked up more in April.  I thought at first that it was rebound from the pain meds but it’s been quite a while since I stopped taking them and it’s still going.  It’s bad.  I’ve lost more weight and I can’t eat without starting the cramp and purge cycle, no matter what time of day.  I called my GI doctor on Friday – I really agonized over doing that because I wasn’t sure how to frame this.  The problem is, she’s giving me very mixed signals.  My impression is that she feels that she’s looked at every possible GI angle and come up with nothing.  Which I can buy for the sake of argument but that doesn’t mean she gets to wash her hands of me.  The reason being twofold:  One, whatever it is,  I still have GI symptoms and no one else is going to want to treat those so it’s her job (even if she’s just writing scripts).  Two, she herself has said “if anything changes or anything new comes up, please call”.  And twice now, I’ve called and twice now, she’s blown it off but has ended the call with the same statement.

So I called.  It has changed.  It’s broken through the routine meds that I take and even my “break through” meds are less effective.  I’m losing weight too fast, and really, someone other than me should be worried about my nutritional status since on a “heavy eating” day – which I pay for dearly in terms of pain and toilet time – I am not eating even 1000 calories a day. My average day’s intake is about 500.  Yes, I know that is not enough.  And I am indeed hungry.  I am, however, averse to so much pain and if I ever want to get away from the toilet and out of the house, I don’t have the option of eating.

She didn’t call back.  I’m going to call Monday and make a bit of a nuisance of myself.  If I get the same response as I’ve gotten, i.e. a phone call where she explains/dismisses my symptoms as more of the same and then advises me to call if anything changes, she’s going to be treated to a rather substantial piece of my mind.  I’m also going to call my primary care to let him know about the nutritional issues.  If I can’t get the GI doctor to give a shit (no pun intended) I suspect he’ll give a damn.

And you might wonder – well, actually I think my readers who are on the patient side wouldn’t wonder but a health care provider reading this blog may wonder – what I expect her to do.  I expect her to actually exhaust her diagnostic options…to consider the thing I’ve been considering for a while now which is chronic ischemia/vascular insufficiency.  The symptoms match it.  That no evidence of ischemia has been found on colonoscopy is (a) reassuring that my bowel is not going to rot away but (b) not terribly conclusive since you get patchy evidence and those patches may not be the ones you sampled and/or may be in the small intestine…where the scope doesn’t go.

I also expect her to give a fat flying damn about the body that is attached to my gastrointestinal tract.  Not one GI doctor, including the one I saw when my BMI was down to 18.3, has had any good nutritional supplementation suggestions.  Nothing.  Not oral, not parenteral (which, btw, I do not want but a little help researching and obtaining a non-dairy high nutrient supplement would be nice).  The closest I got to this was the GI doc in Ye Olde New England Outback who said he would order an appetite stimulant.  No seriously, he did.

 

So…

here we are.  Spring is over.  Summer is coming.  I’m moving. I may be starting a new job.  I am thinking of changing GI docs or at least changing gears on the GI thing from “wait and see” to look and see and treat what you can, no really, I mean it.  But the job thing might change that even. Lots of change in the air.  I just hope I can keep up.

Jump

I’ve never done well with leaps of faith.  There was a time when I would have described myself as a pessimist because of this.  I now know that I am not.  In fact, compared to a lot of people I interact with, I think I’m amazingly optimistic.  E.g. I tend to expect that  – all things being equal – most people will do good, will avoid being selfish and if they must be will act to reduce the negative impact on others, won’t go out of their way to hurt someone, will feel bad if they inadvertently do and will try to remedy it…all sorts of silly, Pollyanna-like beliefs such as these tumble around in my head.  And so, I must conclude, I am clearly not a pessimist.  It seems a little paradoxical to say then that I have a serious lack of faith.  I think there is a common thread though to both.  Most of my beliefs about people tend to involve a notion that we all (most) have our troubles and we all (most) know what it feels like to struggle, even if our struggles look silly and privileged to others who are outside our culture, class, or individual position.  And my lack of faith is colored by the same knowledge.  There are struggles, there are troubles, we don’t all understand one another immediately, well, or sometimes ever and so we can bump up against one another even if we are “good” and do damage when we hit a weakness.

I say all that and it sounds just so fluffy and “up with people” that I feel I must interject here to say that I think some people are outright assholes.  I allow for a continuum here though – some of them just are overly-expressing the universal inner asshole at that time and in other circumstances might be just fine folks (I believe I fall into that category); some wallow in that and become, for me, irredemable dregs until and unless something seriously life changing knocks them out of it and even then, I’m not sure long term assholery is something you get over all at once; some are just wrong and well, what I would characterize as evil.  I do believe the last set are rare.  I also believe the former two types can do serious damage to other people though, as much damage as if they were “evil”.

Taken together, this means that although I do tend to expect the best of people, I also know that life has a lot of sucking in it and some of it is intentional or at least done by one to another.  Thus, when I have to throw my fates to the wind, I get quite nervous.

Ok, now that we have that taken care of…

Back to faith.  I notice my lack of it at times like this.  I am moving, finding a place to move to more precisely.  At some point, we have to stop looking and just go with something.  How do you get past the “buyer’s regret” and the “whatifs” when everything you are seeing is going to be a compromise and just go?  You make a leap of faith.  I’m looking for jobs, not because I insanely believe that I have the energy or ambition to do so but because my current job is hell and I hope/pray that something else would be at least hell in ways that I can better deal with.  But how do I convince myself to look past the knowledge that I might leave this job, then find my health is just not good enough to take the stress of a new one (let alone concerns that the devil I don’t know may actually be as bad or worse)?  More faith.

And then there’s the health.  The area where I have perhaps as little faith as I can and where my most pessimistic thoughts about my fellow humans do manifest.  I don’t have to believe the doctor I am seeing or the nurse placing an IV in my arm is superhuman, in fact I cannot.  I have lived with and worked with them.  There are special ones and there are not so special ones, just like in every other walk of life.  I do have to believe though that the doctors and nurses know this.  I find that they often operate as if they do not.  I wonder if it is some delusion that people are more susceptible to when they work in health care.  I  could see that.  They encounter so many people at their worst, or to put it in my terms, they see a lot of “asshole expression”.  And they are in an in-between field, like education, where market, government, and the very personal needs of many grind up against one another in ways that threaten to pulverize the people and affairs caught in the middle.  And in that context, they work knowing that a bad day at work might involve choices can cost someone a lot: life, health, fulfillment of hopes, dignity, independence…  The worst healthcare provider experiences I have had have involved, almost all of them, providers who believe that they are super special and/or who find my lack of faith personally insulting.  I wish I could explain it all to them.  I wish I could tell them about knowing that they suffer too, that life often just sucks, and that mine has had a lot of sucking in it and so I do not have faith that usually things will be fine.  I think the sum of human existence actually would argue that usually they won’t, and what makes us amazing is doing well (and good) despite that.  And yet here is this set of people who SHOULD be the most aware of suffering, the most aware of human (their own included) frailty and short comings, and therefore have had all of this opportunity to become truly empathetic and self aware and instead, waaaaaay to many of them just chose the path of wallowing in assholery.  This pisses me off exactly because I believe that it is a choice.  It’s not made daily, but I’ll tell you this: it’s made every time one of them deals with an articulate person with a medical mystery.  So far, I’ve found very few of them who rise to the challenge.  I believe being patient in this context and continuing to practice empathy etc. would require not just the emotional constitution of a saint but a deep desire to be martyred as well because in this situation, your health and wellbeing is on the line.  It’s hard to be nice and patient when that’s the case, and I find it increasingly difficult to muster up anything even remotely approaching the faith that seems so apparently necessary in patient/provider encounters.

Eh.  Well, that went off on a tangent.  It’s a long ass way of saying I’m in a period of intense, nearly overwhelming ambivalence and I can’t even allow myself the luxury of stupid, blind faith.  Hope gets me down, so there’s no refuge there.  Love is a help, and I am thankful for it.  As is self reliance and precedent (I have gotten through some really bad shit before).  But I can be a bit mean to myself, and chronic mystery health problems tend to rob you of some of your self reliance, which makes these less sturdy blocks to rest on.

I believe at times like this, I just have to do what is sometimes called baby-steps but which I prefer to consider not in the plural because even “baby” steps are steps, plural, and I can really only just look at one step at a time right now until I get to the big one where I jump…move, see a new doctor, see an old doctor with a new request, etc.

What gets you through?  Faith?  Hope?

busy bee

One week post op.  I’m weaning myself down off the prescription pain meds.  Difficult since my favorite OTC is Ibuprofen but it really does a number on my stomach if I take it daily.

Today, I found a place I might be able to live and job posting for a job that I could do.  Full time, which isn’t ideal, but then I remind myself that I did this job full time for nearly three years and if it hadn’t been so RIGID in terms of time, so unrealistic in terms of task, and so toxic in terms of atmosphere, I probably could have kept at it.  I’m trying to hold on to hope.

So today, I touched up the resume, wrote two drafts of my cover letter, and made a bunch of phone calls for new places to live.  One viewing scheduled for Wednesday – it’s a two family (not my preference) one bath (also not my preference) but it’s the top two floors of the house, there’s a washer/dryer IN UNIT (wooo!), the location is ideal, and the price is good.  A mix of pros and cons but definitely worth a look.  I managed to mention that I have publications when talking with the real estate agent.  Oh yeah, I’m a published researcher, that’s right.  It came up when I gave my husband’s name:  “oh, his last name is different” the agent remarked.  I replied, “Yes, well, I’m an academic and I had published some papers prior to meeting my husband.  My advisor told me that if I changed my name when I got married, it would mess up my publication history so I just kept mine.”  BOOM.  Take that!

I don’t usually boast about the research cred but if someone is going to be socially tacky enough to comment on married people not having the same last name in 2012, then I find it both personally satisfying and socially advantageous to turn that tacky faux pas into an opportunity for self promotion.

reminder

A reminder not to take things too seriously.  In the words of the Indigo Girls, it’s only life, after all.

I need it this week.  Didn’t get the job I applied for, which is too bad.  I think it would have been a nice fit.  I don’t mourn the position, but I miss the little bit of hopeful feeling it gave me to have applied to it – like a $20 bill in your wallet or the muted pleasure of getting up on a Friday morning to go to work.  I had this sliver of hope until Thursday morning when I got notice that I was out of the running for the job.

Most of what’s been eating at me this week is work and housing related.

  • I’m still being fucked about on the accommodations request.  I received a call late yesterday afternoon from HR to follow up on a complaint I made about a harassing coworker (we met, god, months ago and they are finally now writing up the letter, and they wanted to check in and see how things have been going with that coworker).  At teh end of the call, HR adds a note on the latest “progress” on my health accommodation request:  We’re “slogging through” the extra information we asked you to get from your doctor, it’s still “vague on the date of onset” (of illness(es)) “and the anticipated duration, but we’re working through it”.  Holy shit, really?  I submitted that request in early January.  To me, this latest update says we’re looking for excuses to deny your accommodations and are hoping that we can make a case that your health problems don’t qualify as disabilities.  What a thing to hear.
  • I still work with morons.  It’s been hot this week, legitimately hot.  Over 80 several days.  On Thursday, I went to take my lunch break (which HR says if I take at my desk or in my office, where I have some control over the room temp, I can expect to be interrupted and no accommodation will be made to back me up on that) in the break room.  Earlier in the day, the A.C. had been on.  When I went up, it was like walking into someone’s mouth.  Warm, damp, and slightly smelly.  Clearly, one of the cold blooded bastards I work with had been too cold, but they didn’t even open a window for fresh (if warm) air.  Without thinking, I exclaimed “Oh my goodness, it’s toast y in here,” after walking in.  A woman who has harassed me at work over health stuff said “Yes, and I know how much you love  the heat so I won’t open the window for you.”  Nice.  Really really nice.    Yes, I documented it.  No, I’m not going to make ANOTHER official HR complaint against her because the last one was handled so ham handedly that it caused more problems than it solved.  I am going to mention it at the meeting HR set up for next week and I very much consider it to be contributing to a hostile workplace, so if I do need to make a complaint to the EEOC, you can bet this will be in there.  I left, left the building, as was recommended by HR in their response to my request to be allowed to take a break in my building, drove to a place to get food, checked my blood sugar in the parking lot because I was feeling ill, and yup, it was on its way down – 82 and dropping I’m sure.
  • We still need to move and don’t want to.  There’s nothing good listed – we love living in a single family house, can’t afford to buy yet, and desperately do not want to live in a multi-family again.
  • How about health and medical stuff?  Well, that was more last week but I suppose the influence of it isn’t gone.  No lab evidence of mast cell disorder, according to Endocrine.  I’m discharged from their service (and good riddance!).  The abdominal pain was nothing discernible – which I found out (two days) after spending 5 hours on Monday night at my primary care’s office and the hospital across the street.  Home at 11:00 PM after being up at 5:00 AM, what a way to start the week.

On the plus side, my primary care is still as great as ever and was not dismissive.  My most recent round of lots of medical appointments is over (the clustering is because I try to schedule appointments during slow times at work and we just had break last week), ending with seeing the genetics folks at the B.A.T.H..  The doctor was informative and kind. He’s testing to rule out EDS type 4, and although he thinks I may have it, there is no good test for EDS type 3 (hypermobility type – reading the diagnostic criteria of it is like a checklist of shit that is wrong with me). He did have some good recommendations though. And he was sincere. And kind. I think I mentioned that but it bears mentioning again.

So here I am.  Lots of crap things, one small bright spot.  My natural inclination at times like this is to vow not to get my hopes up again because the let down is so bad.  But the bad is bad enough, or enough picture of a trivia game card with names of medical specialities as categories.bad (depending on how you look at it) that I need something.  If I were going to use anything as a sort of getting me through life-saver, I find the idea of a potential job or a nice new home slightly more appealing than “hey that doctor was nice”.  Also, there is the inherent drawback of investing any hope into the possibility of a unifying diagnosis in that each step of the way comes with more appointments, more missed work, more chances of getting a not great doctor or doctor’s staff, or a scary test… I was joking with my husband that, regarding the medical stuff, I feel like I’m at that point in Trivial
Pursuit where you have all the pieces but you still have to role the exactly right number to land in the center and you still have to get the right question.

I think instead I’m going to try for the absurdist path.  Rather than getting caught in the hopeful/unhopeful mindset dichotomy, I am aiming for a more immediate one that I suppose I could call a temporally relativist take on positive existentialistm.  And toward that end, I am going to try to laugh at the laugh at-able and consider that when things are tough, I am at least young (ish) and have love, and a cat, and a comfy bed, and clothes on my back, and I’m continent, and, well you get the idea.

Here’s a fun thing I ran across this week.  Looking for more of this sort of thing as a reminder that there can be fun in the chaos, diamonds in the coal, flowers in the dirt.

moving on

Moving again.

Although the landlord offered to throw out the sorority who moved in upstairs (I’ll link relevant posts later if there are any, too tired right now), we decided the best course is to GET OUT.  And so we are renting a LOVELY single family house out on the water.

Oh god it’s pretty.  And here’s the best part.  1 and 1/2 bathrooms.

GASP!

I haven’t had 1 and 1/2 bathrooms in years, and then only for a short time before we moved states for jobs.  I miss 1 and 1/2 bathrooms.  And they are lovely bathrooms.  The house’s owner is a young plumber whose family include two master electricians and a carpenter.  The tour consisted of this red headed, former coast guard, enthusiastic local boy with an even more enthusiastic handshake taking us from room to room and saying things like “and so we knocked out this wall and put that in and here’s the jacuzzi tub…”  I was nearly drooling.

Cons:  It’s in front of a marsh.  And I hear the mosquitos are horrible.  The commute’s going to be a bit longer.  But no neighbors to share a wall with, it’s in a quiet very residential neighborhood, got a fireplace, is very near the water and beach (which I like to look at if not actually get on/in), one floor, and oh yeah, I’ll say it again…it has 1 and 1/2 bathrooms.

My husband is over getting the lease going right now.  We’re looking at a slow-mo move in, over a few weeks.  Which suits me fine since I’ll be damned if I’m packing this week since it’s FINALS at work and that means super busy.

got plans?

I did.  I had plans this weekend to pack for the upcoming move.  My body has other plans.

After finally feeling pretty decent this week, it has now been announced that I am going to get my period – and here are the cramps.

Crap.

Just took one of my precious celebrex.  I should have taken one last night though.  Pain like this is pain you need to get ahead of.

Ooooh….

1 bath.  2 bedrooms.  Nice layout.  First floor.  Very good kitchen.  One garage parking space.  Small yard.  Private half basement.  Ok with cat.  Ok-ish with smoking.  But here’s my favorite part…option to buy the washer and dryer that are already hooked up in the apartment.

Holy crap!  I think we’re taking it.  I’m, well, I’m cautiously excited.

sleep

I overslept today.  Just kept hitting that snooze on the alarm until, crap! 6:40!  Fortunately, there were no early appointments so my getting in an hour late wasn’t the disaster it could have been.  Unfortunately, I feel like I’m under extra scrutiny right now for having taken so much time off of work.  Rolling in at 9:15 wasn’t exactly what I had in mind as a nice way to start my week.

My rainy week.  Lots of complaints at work about the rain.  I’m just happy it’s cooler than 70.  My body is happy with a nice 62 degree day.   Dry is good, but not necessary.  Cool and wet might make the joints go ZING but apparently my brain is much happier with it than warm and anything.

But sleep.  I need it.  I need it better at least if not more.  And this is why we are moving.  Or at least trying to.  Looking at moving.  So far nothing has really jumped up and said “move here Mr. and Mrs. Dyspatient!” (or as my husband would point out in a moment of feigned pique, “I didn’t go to evil graduate school for 6 years to be called Mr.!”).  So far, there have been places I would have lived but my husband wasn’t thrilled with and placed he would have lived but I wasn’t psyched for.  I’m noticing though that while my thumbs down come nearly exclusively from things like “I don’t like the looks of that old steam radiator – talk about things that go bump in the night!” (this is part of what I’m trying to move away from)…my husbands criteria seem more having to do with a certain “feel”.  An (a)esthetic.  He’s not unconcerned with the other stuff, but the “all things being equal” make or break factors seem to be skewed in different directions for us.

picture of a run down looking bathroom, horrible blue walls and stained tiles

Not what Mr. Dyspatient is looking for

This is not to say that we have given up, and we’ve actually managed not to have too much grumbling and fighting on the topic – I’m pleased to say.  I think a big part of that is because it’s not like he’s pushing for noisy or three flights of stairs just to have a place that “feels” right.  And also, I understand the need to feel at home in your home.  I get that.  It’s important.

On Wednesday, we are off to view another apartment.  This one has 1 and 1/2 bathrooms and forced air heat (and central air).  Oh be still my heart!  Please let it not look (or sound) like a college dorm!