Sad today

I didn’t wake up with racing thoughts today, but I woke up sad.  I cried in bed several times before finally getting up, asking my husband to hold me to comfort me some through it.

It’s been a really tough couple of months, and the return of the anxiety has been hard to take.

I got through yesterday ok though, I managed to not take any ativan even though I woke up with nausea.  It resolved as the morning went on.

Today, I’m sort of on the edge of anxiety, I can feel it tugging at me in the background.  I know if I had something to do today, something I could do and that was more engaging than some solitary pursuit, I would feel better (emotionally) about the day and have some sort of hope that I won’t be spend the day alone fighting bleak thoughts and fear.  My stomach’s not too upset this AM, but I feel weak, dizzy, and my vision is spotty even just sitting up.  I’m sure my BP is way down.  I don’t even want to check it.  Too depressing.

My GI doctor called back yesterday after a third call.  She wants to do a Ph study and an esophageal manometry test. I explained how the last esophageal manometry test went when I was a teen…i.e. the doctor couldn’t get the probe down my nose because it’s too narrow up in there, so he ended up putting it down my mouth.  I got the distinct impression from my current GI doctor that dropping the probe down my mouth would not be an option.  “We’ll try it…” down the nose, was her comment.  Oh that and take a (whole) ativan before I come in for the procedure.  Um….okayyyyy.  Obviously she doesn’t get that it’s not just a matter of upset, it’s a matter of anatomy (which leads to pain, which leads to upset).

Still beating my head against the wall with trying to get in to a new GI doctor.  Still calling every morning and getting the news that there are no cancellations.  I wonder if I should call later in the day?

A friend is supposed to come over later in the AM for coffee/cards.  I hope that goes ok, I hope I stay well enough to do it.  I really could use the company and distraction.

I was planning on starting/trying the evening primrose oil and flaxseed oil today. I got them Monday to try to help supplement my way out of the essential fatty acid deficiency my labs showed back in June (and that was only one week into the starvation diet I’ve largely been on since then).  I worry about trying them…side effects include upset stomach, abdominal pain, nausea, and diarrhea.  So basically, more of what I already have.  Errrrg.

Advertisements

Same

Woke up today the same as yesterday AM.

I had gotten through yesterday ok though.  Not great, but I made it without taking more ativan after the 0.5 mg in the AM.  No retching after that first round, prior to the ativan.  And I was fine last night, except for the massive headache and the super low blood pressure again (71/forty something).  So we’re back to that pattern.

Today, I woke up stressy.  My husband asked what the focus of the anxiety is in the AM.  It’s hard to say, it’s less concrete than it had been…I’m hoping that is a good sign.  Less concrete and so far, (oh god please let it not progress) less severe.  But in general, it’s about health, and my food intake, which is abysmal.  I’m barely making 900 calories a day, and that comes entirely from supplemental shakes, and I’m still having upper GI motility issues even just with those.  So that is the general focal point of my anxiety when I wake up, that and fearing the day will be another bad one.  I try to use positive self talk during these morning moments, but there’s only so far that’ll take you when your body and brain are just totally jacked up.

So I got up at about 6:30 after being awake but drowsy for at least an hour, still super sleepy, but paradoxically amped up, and increasingly so as the morning wore on.  Despite having the muscle tension in my arms and shoulders (which I feel as an unpleasant warmth), I didn’t take any ativan.  I managed to make it until 10:00, then the retching started, just out of nowhere.  It’s different this time from last, in that I’m not consciously having deeply disturbing thoughts when this happens now.  It’s more of a bodily sensation and a general feeling of difficult to check concern and worry (who can blame me at this point).  I did my deep breathing, relaxation, read for a while, all that helped I suppose, but my BP was still high (for me), showing that I was still clearly stressed.  Then, when I was up and in the kitchen, I think I had just thought that I should drink another half a shake, and then the gagging started…then the retching.

Hence the 0.5 Ativan shortly after, at around 10:00.

I wish I knew what kept this in check for the last few weeks.  I know I had been taking ativan on and off for nausea during that time, but I wasn’t waking up all stressed to the max, and I was often making it until early afternoon before the nausea hit me hard.  So I can’t say that it was the ativan that was keeping this in check during that time.

I’m still wondering if this is some kind of rebound/withdrawal from the Lyrica.  I know I wasn’t on it for long, but it had quite an impact on me and this started back up after I had taken it for three days then stopped it (after the week and a half to two week hiatus, it started a day or two after I stopped the lyrica).  If it is that, then I have reason to hope that it will perhaps go away again soon.  I really hope so.

Today, I’m trying to decide if I should go out with my husband to a get together at a co-worker’s (husband’s co-worker) house.  It’s supposed to be bloody hot and we don’t know these people well enough to know how well they host…i.e. can they accommodate someone who needs to stay cool or who will get sick and possibly pass out?  But I prefer the idea of doing something today to another day of sitting inside trying to find ways to keep busy and keep focused on something other than my rotten health.  So I may try it.  We’ll see.  I still have a few hours to decide.

Oh, and my GI doctor, who I paged yesterday like she asked me to…she didn’t call back.  Again.

Hopless

I’m feeling a little hopeless. I called a GI doctor I am thinking of switching to yesterday, I had called a few weeks ago and made an appointment, the first I could get when I was sure I could get a ride….in October.  Yesterday, I called to see if I could get in sooner (I’ll pay for the taxi at this point) and the soonest they could get me in is late September.

I’m feeling trapped with my current GI doctor, someone I increasingly distrust to take care of me and manage my symptoms.  For the first time in a few weeks, I’m having a return of that feeling of dread and hopelessness…

I don’t like it at all.

I’m trying to remind myself that there is a cause for this feeling right now, unlike how it was in June.  Right now, I’m down because of the doctor situation, and because I continue to lose weight, feel awful, and I have a muzzy-headed GI doctor calling the shots (questionable shots here too) at a critical time…a time which is dragging on and on.  I need to find some way to come to grips with this so it doesn’t consume me.  It’s hard.

Oh and did I mention my therapist is on vacation this week (again!?)?  Yeah.  Of course.

I’m hoping to get out today, even just for a short visit with a friend.  I think sitting around the house is not good.  It’s tough though, because most days I do feel very bad, and getting out when you feel bad is hard.  But I’m going to try.  I need to take care of my mental health as well as my physical.

getting by

I’m back on the ativan, for the nausea and vomitting.  I think I caused the nausea myself, trying to hydrate up my super low BP, I drank fruit juice and took electrolyte tablets.  I am thinking the electrolyte tablets were too much for my stomach.  If this is what it is, and if it holds to the pattern (I think this happened before, it feels very similar to the cycling nausea from January to March), it’ll take about a week for my stomach to heal.  In the meantime, I’ve lost more weight and I need to be able to eat (and hydrate) so I don’t end up back in the ER.  So I am taking low doses of my ativan.  I was prescribed 1 mg three times a day.  The most I’ve taken is 2 mg, divided doses, i.e. one mg in the AM, then a half in the late afternoon when the nausea comes back and another half before bed.

Yesterday was tough.  I was feeling better BP-wise, and had the nausea under some control, so I went out to do an errand and visit a friend (I have a friend visiting while my husband is away, she drove us out and around yesterday, I’m still not up for driving).  Healthfood store for vitamin K supplement and licorice supplements (I figure it’s supposed to help your stomach and I could, quite frankly, use the blood pressure elevating side effects).  Then over to my other friend’s house for a short visit.  Very short.  I got dizzy, headachey, super fatigued, and nauseous and had to leave.  Unfortunately, as short as it was, I waited too long and forgot we needed to stop somewhere to get my visiting friend dinner.  That was a bad ride home.

Some retching that evening.

And less food that I’d like.  I’m down over 10 lbs now.  About 15 total since this shit all started in early June.

And my GI doctor still hasn’t called me back.  Not that she’s much use, but I figured I should update her and let her know (she told me to call).  Jeez she really sucks.

Husband’s coming home early from his conference tonight.  I’m deeply grateful, since my visiting friend can’t stay as long as she’d initially thought, which was going to leave me all on my lonesome tomorrow and I’m still feeling crappy enough on and off throughout the day that being alone really sucks.  I know there are people who have no other option, but if you did have the option, you’d take it.  So I’m taking it.

It’s probably going to be a long medical week next week.

Wish my good luck and some extra spoons.

Got through

Got through yesterday.  I felt pretty bad, physically but did great emotionally.  My stomach was better too (so some support for the idea that the mirtazipine was a no go on account of unexpected stomach side effects), until I decided to slurp down too much soup all at once for dinner.  Yesterday was hot, hottest day we’ve had so far this season.  And my head was swimmy.  Dizzy, headachy, and the occasional blast of blue flickering flashes.  I think I spent the day with a mild migraine.

Well, I’ll take a mild migraine over a king sized freakout/meltdown.

Today, it’s therapy and primary care.

Tomorrow, my husband’s going out after work, so I’ll be alone all day and most of the evening.  That’ll be interesting.  If I’m feeling ok, I’ll try to go out.  Hard to plan to drive somewhere when you don’t know if you’re going to be too dizzy/migrainey though.  Once I have on migraine, the next is often right around the corner, especially in the summertime.  I have a friend who says he can come over for coffee Tuesday, so that’ll be a short interlude in an otherwise lonely day if I can’t get out.

This being physically sick was shitty enough.  Having the mental health stuff on top of it is just too much.

Anxious Sunday

Went without the mirtazipine last night.  And I’m trying to forgo the ativan today.  It’s going to be tough.  I woke up stressy and anxious, and it’s just lingering.  Usually, it fades for a time in the AM after I get up (if it’s there….it had been a constant but had faded this past week) then resurges again in the late morning/early afternoon.  Today, it was there when I woke up and it’s remained and built since I’ve been up.  I’m very disappointed.  I doubt it’s a lack of mirtazipine, it’s not supposed to have psych effects this quickly.  If anything, it’s probably just a lack of general sedation that’s affecting me right now.  The mirtazipine truly is very sedating, especially this early on and at this low dose (it has a funny response curve, apparently at lower doses, the antihistamine/sedating effects are stronger…go figure).

So I’m down that this is happening today.  Today, my husband is going to pick up my good friend’s teenaged daughter from camp and we’ll have her at my house until her grandparents come at some point (this afternoon?) to pick her up on their way to Canada.  I’m stressing about my husband driving the hour up a busy highway, stressing about what I’ll do to entertain a teen, stressing about whether her grandparents will come in to visit, whether they’ll have all their pets with them (I believe they usually take the whole menagerie up to Canada with them) and where they will stay if my friend’s parents come in to visit (it’s supposed to be the hottest day of the year so far today, highs in the 90s, not ok weather to leave pets in a car).  So stress stress stress and anxious anxious anxious.

Got this song in my head….

What can you do?

I know some friends and family are hopelessly unhelpful when it comes to supporting someone with a chronic illness, but a great many more are just unaware of what to do.  If you’ve never been there, you don’t know.  And you probably don’t want to seem like you’re imposing, or insulting someone.  And sometimes, your offers are rebuffed for what seems like no good reason.  I’ve been on both sides of this and I know it can be tricky to navigate.  Here are some tips I want to pass on.

Keep in mind that help or support needs to be really and truly freely offered and given.  Take dinner.  Helpful if you know the person’s dietary restrictions and needs and can truly abide by them. Offer, kindly and without strings, to make and bring something that can be refrigerated or frozen.  What is less helpful is an offer to invite yourself over for dinner, or invite your loved one to dinner.  They may not be up for entertaining or being entertained, and if your offer comes with that string attached, they may refuse.

I’ve long wished for a way to give a service like PeaPod as a gift.  For readers outside of the area where you’d know what that is, it’s a service that lets you buy your groceries from a local supermarket online and then arrange to either pick them up bundled and paid for, or have them delivered.  My god I would love the latter.  Probably there is a way to do this, and if anyone figures it out, tell me.  I have a dear friend I’d love to do this for.  Not as a “I’m buying all your groceries forever” kind of gesture, but as a “hey, I set you up with a gift certificate that pays for 4 deliveries of your groceries so you don’t have to use up your resources staggering through the supermarket”.

Pet care.  Pets can end up being affected by their owners’ illnesses too.  I myself have forgone having a dog for years now because I know I do not have the energy that it requires to care for one.  Sometimes, you had the pets before you got so sick.  Sometimes, you need the pets for the love and comfort they provide but have a hard time managing to care for them when things get tough.  A good case in point:  I have a good friend who is going through a real upheaval right now.  She’s got a couple of chronic illnesses, endometriosis, migraines, been diagnosed with fibro and frequently struggles with the “fibro fog”, intense fatigue, and chronic pain.  Her husband lost his job about two months ago, just before she started a new full time one.  She had already been worried about whether she would be able to do the schedule this new job demanded, then about a month into it…a month of her husband having no luck looking for jobs locally, her husband got a job one state and over 5 hours away.  Money is incredibly tight and he has to take it.  So he’s moving to be near the job, and will come home on weekends to be with her.  But it leaves her all week with managing their household and her new, already incredibly challenging full time job alone.  Her household consists of three cats, one of whom is seriously ill and needs timed medication including subcutaneous fluid injections; and two energetic labs that they rescued about a year ago after her husband’s dog of many, many years died.  My friend needs to find someone who can help her with the meds and with doggie care during the day, her job keeps her out of the house for 10 hours a day three days a week and you cannot leave energetic dogs alone for that long without big behavior problems.   While she lives far away and I can’t offer to pet sit (and my own schedule and illness wouldn’t allow for it), I can offer to pay for a few days of doggie daycare to give her a break now and then.  It’s about the cost of a good mani-pedi.  So I’ll paint my own damned nails and toes once a month.

Laundry…especially if your loved one has to do laundry at a laundromat.  Offering to come help carry clothes in and out is a huge help, and you can schedule hangout time while you wait for the cycles to run.

Yardwork and snow removal.  When Mr. Patient is out of town, I have images of me wasting away in my home, snowed in.  There is no way in hell I can shovel.  If you have a friend with a chronic illness, offer to clear snow or pay a local kid to do it.  Yeah, your friend might have a capable spouse or family living with them, but if they are supportive, they’re already doing the grocery shopping and the laundry and the cooking dinner…you get the picture.

If you’re a really close friend or family member, you could offer to drive them to a doctor’s appointment now and then.  Doctors’ appointments can sometimes involve painful tests or procedures, and even when they don’t, they can be emotionally draining.  If I had a nickel for every time I have had to pull over and cry while driving myself to or from a doctor’s appointment, well I’d have enough for a cup of coffee at least.  So know that if you offer to drive, you are offering to be moral support too.

The time to pitch in is when you hear of a change.  Is your friend having surgery?  A flare up of symptoms?  Is your friend’s spouse going out of town?  This is when your friend will really need the extra help.  And it’s better than flowers or cards or fruit baskets.

the slippery slope

Today’s news brought to mind issues of stigma, how revealed traits and social ties can help to knock it down, and the difficulties of being charged with that task.

The news item I’m referencing is the story that an apparently prominent U.S. republican senator has come out in favor of same sex marriage.  He attributes this break with this element of his party’s widely held and harshly wielded platform to the somewhat recent knowledge that one of his sons is gay.

“My son came to Jane, my wife, and I, told us that he was gay, and that it was not a choice, and that it’s just part of who he is, and that’s who he’d been that way for as long as he could remember,” said Portman.

What was the Republican senator’s reaction?
“Love. Support,” responded Portman.

From One conservative’s dramatic reversal on gay marriage, By Dana Bash, CNN Chief Congressional Correspondent, March 15, 2013.

This has sparked a debate among my friends on Facebook. Not about whether same sex marriage should be legal.  With the exceptions of a few inlaws hanging out in my “friends” list, I can say with certainty that 100% of (the rest of) my friends on FB are pro-gay marriage.  I do not FB friend indiscriminately.  Despite having been on FB for a long time, I have fewer than 100 friends and that number stays relatively stable.  The debate has been along the lines of “oh now that this guy has a son who is gay, he’s ok with gay.  Hypocrite!” vs. “when things affect us personally, our world view changes…”  I come down on the side of the latter, although I have to claim that I had the “hypocrite!” reaction too.  That was my initial reaction, soon followed by the recognition that it is through social interaction that humans develop a sense of “other” and it is through meaningful social interactions and positive connections that we develop a sense of acceptance for those “others”.

Part one:  Invisible chronic illness (ICI) comes with intense stigma.  Disease is stigmatized, but there is increasing tension if the illness is invisible, chronic, and if “the afflicted” is female.

If the trait is considered bad, then the person with it is considered bad.  That is my quick and sloppy definition of stigma, which holds for not so clearly “sinful” traits as well (see Part Two below).  So what’s the stigma of the ICI?  The stigma is twofold.  There is the “disease = bad” that all people with an illness or a disease-perceived disability deal with.  For those with a chronic illness, there is the added issue of their illness going against the collective disease narrative which people without a chronic illness have constructed for themselves (and everyone else).  You get sick.  You get better.  The end.  Chronic illness, chronic evolving illness, violates this and it challenges people.  And the common unexamined reaction to that challenge is to get pissed off.  Pissed off at yourself if you’re “the afflicted” for not being able to do what you used to be able to do, or for doing something that makes things worse because you try to do what you used to be able to do…etc.  Pissed off at your coworker, e.g., for taking so much time off this month.  And so on.  For a chronic, evolving illness which is invisible (or largely invisible), the stigma manifests in reactions which state or suggest that “the afflicted” is not afflicted with anything save a desire to cop out, get attention, get a break, complain, openly express feelings that we are supposed to lock up (disappointment, frustration, anger, fear, sorrow).  If you can’t see it or quantify it in a lab value, you can easily believe that the afflicted is looking for a pass on social requirements.  And this explains why women with ICI are so extra screwed.  The first woman most of us know is mom.  Mom is a special kind of saint.  Mom makes food for you from her body.  Mom changes your diaper when its full, relieving you of a set of what must be truly unpleasant sensations.  Mom picks up after you.  Oh I know, there are bad mommies out there but let’s use those exceptions to prove the practically universally held concept of MOM, which is one that starts and becomes fixed at a quite young age, when MOM exists to serve and love you.  Mom does NOT walk into the room and say “you know what kid?  change yourself!  I’m exhausted and can’t even stand up right now let alone deal with your diaper full of poop.”  When moms are shown doing or reported to have done anything other than being that serving MOM, there is undisguised public revilement (I say public because while people seem to feel a deep and rewarding compulsion to jump on the “bad mommy” bandwagon in public responses to abuse and neglect by a mother, few of them are willing to actually do things to make this abuse and neglect less likely to happen).  A woman is a potential MOM.  It is part of what defines her as a woman.  And a MOM who doesn’t make dinner, who needs help with the laundry, who doesn’t put the secondary social needs of her relations over her own physical well being, who doesn’t act/talk/look gracious and effortless in doing what she should properly do is a BAD MOMMY.  You put a woman with an ICI into any social context and you will very quickly see both internal and external struggles about power and efficacy all of them with the threat of being labeled as selfish (the cardinal sin of MOMs) lurking around every corner.

So many women I meet, virtually or in person, who have an ICI seem to have at least one significant source of unsupportive, stigma enforcing people in their lives.  Often, there’s at least one source per sphere.  Some at work, some at home, some friends, some at the doctors’ offices, some extended family.  I wonder sometimes, about myself, if the source is actually me.  Am I just projecting my internal struggles with feeling like I fall short of what I want to be and do onto others?  Yes.  I know I am.  But this doesn’t mean that there aren’t also people out there who are quick if not happy to also judge me negatively for displaying traits of an ICI.  The two feed on each other.  This is the slippery slope.  It doesn’t take much evidence of unsupport for me to get into a nasty cycle of feeling bad about me and feeling bad about others.

Part two:  I think support doesn’t come without love, and I wonder if you can have love without support.

I personally feel the answer is no.  I realize that this goes against what we are told, what is codified in the saying of “love the sinner, hate the sin”.  I am reflecting on ICI because it is my own personal experience but also because it shares the features of concealable and unchosen with sexual orientation, what kicked of this meandering.  Knowing and loving someone with an ICI bestows a better understanding of the experiences from perspectives ranging from first person (the observed “afflicted” beloved), to second person (the experiencing belover of the “afflicted”), and even to filtered third person (the doctors, the extended family, the coworkers of the “afflicted” beloved and belover).  That understanding extends beyond the immediate relationship and to others who are in similar contexts.  Consider the old friends I connected with around Christmas this year.  If you aren’t up for following the link to that post, the short version is I that despite disclosing, I experienced a relatively warm and supportive interaction with some friends who I hadn’t seen since before I was a person with an ICI.  I suspect a lot of this was due to the shortness of the interaction, but I felt some of it came from the fact that one of the more socially leading of this set of friends has a son who was born with a heart defect.  This was cause for a health crisis immediately after the son’s birth and has become an ICI now in the child’s older years.  And not to disparage my friends, but I suspect that lacking that experience, they would not have been as supportive and warm.  I strongly feel it is human nature to be cruel about things you don’t understand.  We are wired to judge quickly, even to prejudge, and to act on those judgments.  And from that wiring comes behavior we classify as bias and bigotry in otherwise “nice” people.*

I think that support comes from love, even if it is not for the exact person supported.  My friend can love his son who has an ICI, support his son who has an ICI, and extend some of that support to me.  And my husband can love me, support me, and extend that support to others with ICIs.    But what about the people who love someone with an ICI but do not support them?  Me, I’d argue that they don’t truly love.  Maybe they don’t truly love that person.  Or maybe they don’t truly love.  Maybe they have some predisposition to narcissism, some inherent limitation of empathy, too much resentment for anyone else who they think is “getting a break” while they are left to struggle with their own personal burdens.  All of these things are impediments to caring about anyone to the degree that you  care about yourself.

Part three:  You  cannot change minds if you don’t disclose but god damn, it sucks to be the one disclosing.

I have and still do try to deal with the stigma through concealment.  I try not to disclose or I am consumed by managing who I disclose what to.  This is because I used to be a much more open person.  I assumed others were as willing as I was to listen to other people.  I present as evidence my past belief that when people asked “how are you?” they really wanted to know.  I really wanted to know when I asked. I wouldn’t have asked if I hadn’t, or if I hadn’t had time.  Oh but the glazed looks on people’s faces finally sunk in.  Hey guess what?  For the most part, they don’t give a shit.  They are not asking a question.  They are making a salutation.  The two are not the same.  Amazing that it took me a degree in linguistics and nearly 30 years of life to figure this out.  Now I ask and answer this “question” with impunity.  “Great!”  or “not bad!”  I’m glad I figured this out before I got sick.  I do feel the tension when a coworker – who has been affected by a recent schedule change due to my ICI – asks me the next time they see me “how are you?” I do feel a twinge of “oh crap…do I play it cool and provide the socially acceptable but factually inaccurate answer which might, if they are thinking about it, make them wonder “well if you’re fucking ‘great’ today, why the hell weren’t you here yesterday afternoon?!” but at least I know I have a choice in how to answer.  More often than not, my answer in such a situation is a compromise between socially acceptable and factually accurate response, i.e. “alright, thanks…and you?”  It is one of the strategies of concealment which anyone with an ICI understands.  Concealment can work for a short time, for interactions limited by short duration or infrequent occurrences.  Over time there comes a point where even if I am working really hard to hide my ICI, it shows.  I might pass out.  I might have to take my shoes off or put my legs up because my blood is pooling in my feet and they feel like they are on fire.  I might not be able to walk as fast as my colleagues when we are leaving the office at the same time to attend a meeting nearly a mile’s walk from our building.  I might choose not to leave at the same time so I don’t have to worry about being seen to not keep up, which might make me seem to be anti-social.  I might have to leave work early for a doctors appointment, or come in late because I didn’t factor the hour lost to an unexpected vagal episode into my morning routine.  I might not be able to take a trip to California to see my inlaws.  I might have to cancel my vacation and answer questions at work about why I canceled it.

I have also tried to deal with the stigma through disclosure and trying to force acceptance on myself and others.  This, I am not so good at.  My use of the word “force” is not accidental.  I’d like to say “engender” but the reality is I have no idea how to do something so subtle.  I am largely graceless in my attempts to play the respectable sicky.  Some of this is just my nature, me pre-sick. I’m really much more of a “yeah that’s what it is, so what are you gonna do about it?” person when it comes to protecting the weak, which now includes me.  However, I have mellowed with time.  I have a few more tools in that toolbox.  But when it comes to me and my illness, that toolbox is waaaaaay out of reach on account of the piles of self recrimination, disappointment, frustration, and grief which I have surrounding my own feelings about me and my broken, bastard of a body.

Here’s what I do know though.  My husband loves me.  And he supports me.  He is now one more person, like my friend with the son with the heart defect, who will be an ambassador for people like me.  The more people I can get in my corner, the more people I can get in all our corners.  When I can, I will come out.  And when I can, I will build allies, even if they are only temporary.  It helps to feel like I am doing this for more than myself.

Ok, well I’m done for now.  Now, I’m off to shower up and then go for an upper endoscopy to find out why my body is playing this new trick of unending, intense nausea.  Here’s hoping there’s an addressable answer in my stomach and that it’s not just one more unmeasurable and therefore invalidated new fact of my life.

* it would be a gross oversimplification to misapply this to explain all bias and bigotry.  What I’m describing is the human tendency (and perhaps evolutionary necessity) to take cognitive short cuts which can lead to carelessly cruel behavior that is the sort of unintentional bigotry we all have experience with.  I do not think that this or this alone can account for intentional cruelty and abuse.

Friend time

I had a little time with an old friend yesterday.  She was up for a conference that my office was hosting, came up the night before and left in the evening afterwards.  It was good to see her.  There are so many things that she didn’t know about.  “Why didn’t I know you had a thyroid cancer scare?”  I thought she had, but I guess because I hadn’t thought of it as a “cancer scare” and more as another possible explanation for my symptoms that didn’t pan out.  I don’t tend to share those widely I guess.  I do on here, that’s different.  It’s an anonymous blog.  I feel safer sharing here, even with a low readership.  Maybe because of it.

Her being here threw off my routine a little, and I hadn’t been getting good sleep this week anyhow.  It’s been off as a baseline, then this weekend, we had inlaws who made plans to go to a ridiculously late show in Big City Nextdoor.   I didn’t join them in the ridiculously late plans (and did take a perverse pleasure in seeing inlaw who had made these plans flagging at 8:00 PM and saying “My god, what was I thinking buying tickets to the 10:00 PM show?!”) but I did end up staying up til they got home.  I knew I’d just get woken up when they got in even if I had managed to fall asleep.  So my schedule’s way off.  And it’s been unseasonably warm.  Those two together are enough to provoke migraine, which is what I had yesterday pre-conference.  Oh and the conference room was overheated.  So I was a bit of a mess.

I am thrilled that she was here, but I’m also a little thrilled that my home is now guest free for a while.  I’d like to get back on my schedule, if for no reason other than that it’s my busy time at work now that the semester is starting. I need to be sleeping (or at least trying) at a normal time and getting up and going at a normal time.  I hope my body falls in line.  We’re planning to visit again in April, on a weekend so it’s not in the middle of everything.  Looking forward to it.

Old friends

This is perhaps the busiest christmas season I’ve had in a long time.  Party at my brother’s work (BATH research group), party at work, party last night, and party tonight at my boss’s house.  The first one didn’t go so well.  It was smack in the middle of the week and after a long day of work.  I’d already been sick on the weekend with a god awful round of stomach cramps.  And I forgot to premedicate prior to the party, so I had to leave the party early and get sick at home.  😦

I took it easier on Thursday, and I took Friday off/worked from home – which was great since Friday night was the getting together with old friends night.  I didn’t feel good all day, and gave my husband the head’s up that it would probably be a “hi/bye” kind of event.  I managed to last about 2 hours before I was swaying and dealing less than gracefully with the whole autonomic screwery.  Some highlights from last night included the bar tender telling me that my drink order (ginger ale) was “boring”.  Well fuck you too missy.  Enjoy that nickel tip.  Explaining to my friends (thankfully, a small group at that point) that I don’t drink because alcohol and me don’t agree.  They were gracious about it, only one follow up question and it seemed to be asked out of genuine concern and not some kind of puerile interrogation type of inquiry.

Then there were references to my not driving when we all knew each other in my late teens and early twenties.  “I wasn’t allowed to get a driver’s license until I could go 6 months without passing out – I passed out a lot” I explained.  “What?  You did?  When?”  a group asked.  “Jesus, all the time.  The time at lunch in 11th grade, the time I passed out on the field trip to Paul Revere’s house, the time I passed out on the plane trip to Italy….”  “What was wrong?”  I explained that I was hypoglycemic and didn’t know it.  I think I did a decent job of not over explaining or offering too much gory, eye-roll inducing detail but still managing to convey the important bits of info (i.e. “why I always mooched rides off everyone”).

And then there was the talk about taking public transit and walking around in the city, and how people get in your way and crowd you, even when you walk with a cane.  “You have a cane?” one person asked with some evident shock.  “yeah, I only use it sometimes” “why?”  “I have a connective tissue thing, it’s painful.  I’ve always been very flexible, but before I could bend and pop things out of joint and it didn’t hurt.  Now, it does.”  Head nods all around.  I’m one of the younger in this set of people, and I’m 41.  Everyone is becoming familiar with the rotten tricks their bodies can play on them.

I think it helps that one of the old friends who has kids has a kid who was born with a heart defect.  The kid is doing great, and is now verging on adolescence.  This friend is not a stranger to hospitals, his son has had multiple surgeries and still needs to go in routinely for moderately invasive check ups.  People with that kind of experience do not tend to look at you like a freak for having medical problems.  It’s a very welcome change from how my disclosures are sometimes greeted.  I think it helps that they knew me when I was young and spry and they knew that although I never was known for my amazing feats of strength, I was definitely not a shrinking violet who needed to be treated with kid gloves.  Miles long walks through the city, running and jumping around on the beach wall and climbing lifeguard chairs at night, dancing in mosh pits and spending the night hanging out on the Boston Common because we missed the last train out.  Actually now that I think of it, one of them was with me when I fell once.  We’d been out at a dance, his car had been towed, we ended up in a bad part of town getting it out, and at one point I had to haul ass across a busy street in my way too high heels. I wiped out and came down on my knee, hard, but other than some serious swearing, I got up and soldiered on.  I think the fall and post fall experience made it clear that I’m not a wimp.  He tried to help me scrub the glass and gravel out of it later at his apartment but he was being too delicate.  “Give me that” I said and took the washcoth, then proceeded to scrub with a vigor that made him turn a rather green shade of pale.  Contrast that to the people who only know me now, as a “sick person”.  The judgment I get from them is pretty severe.  Not all of them, but for example, at my last job I was treated to frequent conversations about how to will one’s way out of being sick, or to the 100 stupid questions about what was wrong with me.

So overall, despite it being a short event, it was nice to see folks.  A few of them live quite near me it turns out, and we’re planning to get together again a dive bar in my old neighborhood (they live in the part of town where I grew up).  There’s a comfort to staying close to home, to familiar places.  If I get in trouble, health-wise, I know where to go, I know the taxi phone numbers, I know what hospitals are good and what aren’t.  I know how to drive home even feeling bad, without getting turned around or lost.  On my way out last night, one of them said “Ok, we’ll definitely do a bar night!” and I said “Absolutely, but earlier…I can hang out longer if it doesn’t start at 8:00 PM”  “Not a problem!” he said – and boy doesn’t that make a difference.