Which antibody?

I just got a call from my primary care’s nurse asking me “hey Dr. ________ thinks you had autonomic antibody labs done, do you remember which labs they were?”  Now one thing you have to know…these are not common labs.  The one in particular that they were thinking of is the serum ganglionic AChR antibody which goes with Autoimmune autonomic ganglionopathy (AAG).  Never heard of it?  Don’t feel bad.  Most doctors and labs have not either.  And if you just say “anticholinergic antibodies”, odds are you’re gonna get the wrong test.  Gotta be specific, especially on the ganglionic part.  This call wasn’t about me, or my medical record.  It was about another patient who he wanted to order this lab on and wanted to make sure he ordered the right one, where did I have it drawn, who ordered it, etc.   I almost asked if it was my cousin (our parents were adopted from different birth families, we were not raised together nor did we see each other often, but we share a LOT of medical problems….and she just started seeing my PCP this past November) but decided that would be crossing a line.

So there’s another reason I love my primary care.  He knows I came into his office with papers about AAG last Fall, telling him this is what I want to check for. And not only does a patient researcher not freak him out, he sees this as a resource.

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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.

Fall food, part 2

The cake was a hit.  Mr. Patient made blackberry coulis, a variation on the recipe here.  Variation because Mr. Patient and I are very bad about our quantities.  We just kind of cook by eye, nose, and taste.  Looks, smells, and tastes right?  It’s right!  I made a spiced peach puree.  A super simple recipe that I’ll post below – and quite tasty….if you like peach.  I was informed by my brother that peach, along with cinnamon is a “dirty flavor”.  It’s not bad, but it’s not fresh, was his reasoning.  Well then apparently I like “dirty” flavors, because I really liked this peach puree and the bright sweetness was a nice counterpoint to the tart and complex blackberry sauce.

Spiced peach puree:

Again, quantities are rough estimates (except for the peaches, on account of packaging).

4 cups of diced peaches, strained.  You can probably use frozen or fresh too but I find the cups of diced peaches are better in terms of softness (or absence) of peel.

1 – 2 Tbsp of cinnamon

2 dashes of ground ginger

1/4 cup of white sugar

Place all ingredients in a blender or food processor.  Blend thoroughly and chill.

In the photo immediately below, the peach puree is to the left of the cake slice.  The right of the cake has the lemon icing, and then laid on that and to the right is the blackberry.  I probably would just do one if I were doing it again, but I had to try it all since this was a new set of foods for me.  The blackberry is too dark to really discern but the color was a deep red, so that plus the cake and peaches made for a really nice set of Fall colors.  Below the cake picture is a shot of the pumpkin pudding, the pumpkin pudding recipe is here.  I made another batch yesterday AM before going out with my brother on our birthday shopping trip.  Consider it “queer eye for Dyspatient”, it was my birthday present from him, a shopping trip to a store that there’s no way in hell I would have gotten myself to because after parking and walking and shopping, I would not have had the energy to get home.  Success, I scored a couple of nice additions to the wardrobe, including two very nice, lightweight cardigans that will convert my yearlong summer wardrobe into something more seasonally appropriate.  With heat intolerance comes a whole slew of clothing constraints, a major one being sleeveless or short sleeved tops are now a necessity.  I’m pretty tired though.  Woke up today with a bit of hurting.  My “little” brother is 6’4″ so even walking slow, it’s hard for him to walk at my snail’s pace (I’m 5’4″), and the faster I walk, the harder I come down on the hips and legs.

angel food cake with peach puree and blackberry sauce

Fruity!

Whisky pumpkin into pudding base in a stovetop saucepan.
And pumpkin pudding!

results, 2

Ok, it’s bugging me now.  I had the weekend without work to distract, got blown off by brother, and hubby was at a conference all day Saturday.  So I think I spent too much alone time with very little to keep my mind off the results I’m waiting for.  Or maybe it’s that this is the start of the week I find out about them.

Every Sunday, evening, I find myself taking a mental inventory of my week.  It’s like balancing your checkbook (anyone remember doing that?) before you go shopping.  How much do I have?  What do I need to get?  How much can I spend on each thing?  Last night, I was doing this, starting to run through my week in my head.  Work from home Monday – find and buy rare out of print book for student who is blind so we can cut and scan it, write to professors who still haven’t sent me their syllabuses (syllabi?), continue cleaning up and formatting books for one student with low vision and articles for student who is completely blind, log all time spent on each task to send to boss to help justify the strangeness of my working from home.  Tuesday – work at work.  Process mailing, hold office coordinator’s hand while she does the mail merge I requested.  Record audio for training video, run speech to text and create captions (ugh, 14 minute video…will have to break into chunks because I know my computer cannot handle this processor-wise).  Nag professors.  Edit.  Leave work for intern. Wednesday.  Wednesday – get up early and don’t eat or drink anything, pass out in a lab, then go see my primary care to find out if I have antineuronal antibodies suggesting paraneoplastic syndrome.  Go home and clean to prep for inlaws coming.  Thursday – vacation!  Clean for inlaws.  Lay on couch.  Friday – work at work.  No appointments.  In law prep done.

This weekend, we had a return to subtropical weather here in New England.  Ugh.  This shit is killing me.  My bp barely got over 90/50 yesterday, lots of dizzies, lots of eighty something over forty something readings on the blood pressure monitor. I really thought it would rain at one point.  The clouds rolled in, the leaves turned over, my head felt like it was going to pop and the air was heavy.  But instead the sky absorbed the nastiness and the sunlight came back, thicker and hotter than it was before.

photo of dark clouds over a street

heavy sky

freedom not to choose

I recently had occasion to revisit Christine Miserandino’s excellent essay, The Spoon Theory.  Last night, after literally months of chasing his brother down to make plans for their dad’s 70th birthday, my husband finally had a talk with his brother about said plans.  A real, concrete talk.  This did not go well.  Post talk, my husband and I were sitting on the couch feeling drained, pissed off, sad, and well, just all kinds of bad.

Back up.

My brother in law had wanted to do an all out big hurrah for his dad’s birthday.  Despite my brother in law’s wife being pregnant with twins, a much sought after and difficult to attain pregnancy, he was talking trips to Europe in April.  April would have been four months after the kids were born.  I recall as recently as late last Fall, when his wife was huge with impending kids, he was still talking this nonsense.  “If he goes, if he goes ahead with this plan and leaves her alone with those babies to run off and have a booze and cigar fueled tour of Europe, he may as well pack ALL his shit because it’s gonna be on the curb when he gets home,” I told my husband.

Flash forward a bit, post babies but still winter.  Still months before dad’s birthday.  My brother in law realizes either than he doesn’t have the time or the money to make this trip.  Good.  Finally.  Sense!  But still, let’s go to a resort in the US!  Weekend at Bernies style!

I got sicker.  Brother in law got harder to get in touch with.  The time drew nearer.  His own plans just for his kids’ christening took forever to gel, an event that was roughly scheduled around their dad’s birthday.  Ok, so putting off the birthday event.  Doing it in the summer now.  And maybe more local.  My husband really tried to get together with his brother on this.  I planned to take time off so I wouldn’t need to try to get my sick ass into work on my own and use up a day’s spoons just in my commute.  “Just let me know when!” I said.

Vacation planning time came up at work.  At the time, my husband had only managed to nail his brother down to “it’ll be one of two weekends in July”.  I tried to plan around it, but it was tough.  I had to pick time off and we still didn’t know when it was happening, except that we knew it would involve a weekend.  Ok, so we figured they come in Thursday (and this was discussed with brother in law), go golfing locally Friday day after my husband gets me to work.  Then Saturday they head off to some golfy-area and stay at a hotel Saturday night, golfing all day Saturday and early Sunday.  Drinking, smoking cigars, etc.  Great.

Except that this isn’t what my brother in law “envisioned”.  Notice I didn’t say “planned” because people like him don’t plan.  They can’t be bothered to make the choices that planning entails.  When you are merely envisioning, you can have endless opportunities, possibilities.  When you plan, you will systematically eliminate all but one set of those possibilities, eventually destroying them.  Whole worlds of possibilities are gone when you finally commit to a plan, what is left is only that one potential world which you have committed to trying to attain.  My brother in law cannot handle this process.  He is a dreamy little dreamer, who is in total denial about his dreaminess.  I can handle dreamers who know they have a soft gooey center surrounded by a light flaky crust.  I can’t handle dreamers who think that they live in the real world, who drift through their days fueled by the privilege of not needing to choose, enabled by the people around them to continue to entertain countless, limitless possibilities to the consternation and detriment of anyone near them who actually needs to know what the eff is going on.

Yesterday, my husband sent my brother in law an itinerary.  Oh boy, not a thing to do to a dreamy little dreamer like him.  That got his attention.  Not that he called my husband.  No, my husband still had to cyber-stalk him all day to get a reply.  Finally, they spoke.  Brother in law revealed his massive disappointment in the plan my husband had concocted based on the limited and late input he got from and about my brother in law.  Input like dad telling my husband that brother in law actually wanted to come up Wednesday to Saturday because he had made work travel plans for the following Sunday or Monday.  Again, plans for {this or that}.  Not plans for this.  Or plans for that.   Last night, dreamy dreamer revealed his boozy smokey vision to my husband, communicating that he didn’t think that they should stay here for any part of it because they wanted to kick back, let loose, not worry about me and my problems….<needle scratch> 

Gosh darn it, cripple problems are no fun!

Not that those problems would go away, especially not if he took my husband out of the equation for work days that I now had to work because my brother in law couldn’t be bothered to commit to even planning let alone a plan back when even an outline of a plan would have given me the tools I needed to make my own plans.

This boy who pretends to be a man is one of the people I was thinking of when I wrote about blithering optimists.  And he’s been a source of actual strife for me in my sickness any time the practicalities of his sphere overlaps with mine.  I told my husband last night that they’d better plan to stay somewhere because I don’t want him in my house.  Brother in law has made it clear that if he is forced to stay here, he will either not respect my constraints (like needing to go to sleep, stretch my legs out on the couch, or eat when I need to) or he will respect them but with heaping helpings of resentment and disdain.  I don’t need that shit.  Apparently I can’t keep it out of my life, but I can keep it out of my home.

For a while now, I’ve been thinking of writing a “dear family and friends” letter.  My previous attempts at a narrative have ended up in 5 page single spaced .5 margin word documents that still are incomplete.  But those didn’t have a purpose other than cataloging, chronicling my illness.  I realize I’d have  to think about the point of this, because if it’s to communicate to friends and family what it’s like, if it’s to help manage their expectations in advance, then I need to be aware that there are people like my brother in law for whom it may just not matter anyhow.  We stand at opposite poles of the planning continuum and unlike Christine’s friend in her essay, my brother in law has not asked what it’s like for me to live like this and may not give a crap.  So if I do write this, I will write it with that audience in mind, with him standing in for all the not giving a shit people in my life.  And I will assume that if I choose to write it, it will be at least as much an exercise for myself as it is a letter to them.

Family time

My sister’s birthday was yesterday.  Although we haven’t been speaking since 2011, her birthday is not meaningless for me.  We had been very close all of my life, save for the periodic episodes of her deciding not to talk to me.  Those started after I got sick(er) and increased in frequency as the years went by.  The first one was in 2005, when things really took a turn for me.  It was a tough year, marked by a bad break up of a long  term relationship (in part because the guy couldn’t handle being yoked to a sicky), a transformation in my migraines to daily headaches, the addition of vertigo, massive weight loss from the then recent state change in my gut, and the onset of debilitating hip pain which now just comes and goes.

The next time my sister stopped talking to me was when I was un/underemployed after leaving grad school due to the inability to manage my health without academic accommodations.  And then most recently, this.  This is the longest period so far, coming up on 2 years.  We’ve had one short facebook chat, around this time last year, when I stumbled upon a news story in the local Big Northeastern City Big Newspaper where our mother was interviewed about her having come to the catholic faith late in her life.  The writer of this piece wanted to show how a parish was still growing despite the sexual abuse scandal that has been sweeping the catholic church for years now.  I don’t know if my mother was put forward by the parish leadership or if she self elected to tell “her story” but somehow she ended up as one of three people interviewed for it.  Her “story” was that she felt bad seeing the effects of the abuse and identified with the church leadership because there had been abuse in HER family and she didn’t know about it until too late and now, like the catholic church, had to deal with the mess.

Yes, she did.  My mother did liken herself to the pope.  And she also did completely and so publicly revise my family’s history – most notably with regards to her knowledge and the timing of that knowledge.  She knew plenty early to do something to stop it from continuing, and she didn’t.  The person who told her was my sister, as a very young child.  My mother knew, and she did not take steps to remove the abuser from our home or to protect us from him.  And so the abuse continued for years.

I wrote a scathing letter to the reporter.  Because she didn’t disclose the relation of those “abused” in my mother’s story, I don’t think the reporter technically violated privacy laws.  However, she acted unethically and I was sure to let her know exactly what I thought of that.  Before sending in this letter, because it disclosed some details of the abuse and my family’s history, I wrote to my sister and told my little brother.  See, that’s what you’re supposed to do before you start airing family’s dirty laundry in public.  They were both ok with what I wrote and with my sending it in.  But aside from that interaction, I have not had any conversations with, emails between, or sightings of my sister since late Fall 2011.

photo of boston from beach

4th of July, from the beach in my hometown.

This time, we stopped talking with a bang instead of the usual inscrutable random reason, like “you rolled your eyes when I said X during conversation Y at Christmas!” (2005).   This time, I blew the hell up.  It was related to health stuff.  I’d spent the day in the hospital, a day that was supposed to be a vacation day that I was going to spend with her.  The day after Halloween, and I had been looking forward to it for months.  But I’d had chest pain for days, that just kept getting worse.  Called my doc  after the weekend was over and was told “go to the ER!”  I hate that.  I won’t do that again, but I did it that time.  My sister took me, didn’t have to but she offered.  But I could tell she didn’t want to be there, stuck in the ER with me appearing not to be ill except for occasionally flinching when the pain gripped my chest.  So I told her if she wanted to go she could.  She did.  And fucked off for a while.  When time came to pick me up, I called and got no answer a few times.  Finally I got her, she was doing dishes.  She picked me up and instead of going straight home where I could rest (because I got speed and steroids in the ER and felt like shit), we had to stop at her house and finish doing whatever she was doing….her house was warm.  Bright.  Difficult.  Then to my place, where she did her laundry (I offered, but I had figured she’d maybe at least start it during the hours I spent in the ER).  And then the family bullshit.  She hadn’t been talking to my brother for a while at that point.  They’d had a fight.  She was supposed to see him that night for the first time in a while.  And she wanted to strategize with me I guess.  Talk about it.  Analyze it.  In the weeks before this planned event, she had tried to engage me in similar discussions.  I had told her that I did not want to be in the middle of her and my brother again.  That I hoped things worked out and they could reconnect but that I was not going to mediate.  I told my brother the same thing.

That night, in the course of this discussion, I tried saying this again.  And god I was so tired and so sad about my day being blown to shit.  And about not being able to do the things I wanted to.  My guard was down and my emotional resources were just gone.  And she decided that my brother and I had been conspiring against her, money was involved (tangentially, I thought but not for her).  She started going into her seething rage mode, tight mouthed and snippy.  The one that I, by that point, knew marked the start of a several month’s silence on her part.  I was panicky about this, those “no talking” times hurt, as I am pretty sure they were designed to do.  Then I got pissed off.  How dare she drop this in my lap, and then especially.  Why did it always have to be all about her and her tragic life?  And I got snappy with her.  She was going to leave in a huff, as she does before not talking to me for months, and seeing that this was where things seemed to be going, it was like a spark for what – that day – was a very short fuse.  If she’s going to act like my having a bad reaction to her bullshit is a monstrosity, then why do I hold back?  Why hide the rage and frustration that I feel about my health and my life getting so small, why hide how much it invalidates and demoralizes me when she sits there telling me all the things I should do, or could do (if only I’d stop playing sick apparently)….why hide how angry it makes me when an occasional failure to treat her with the delicate kid gloves she requires results in earning her apparent spite and condemnation? And so this time, I really blew up.  And while I’ve missed my relationship with her, I have not missed the relationship we had had for the last few years.  What I missed was one that had been gone for a while.

In the very early morning of her birthday, I woke up screaming.  That was 1:00 AM July 4, and my throat still hurts.  It was a lot of screaming.  It was a bad dream.  It involved illness, my mother, my sister, so much pain – both physical and emotional.  At the end of this horrible dream, I was being held down and hurt horribly, and woke up screaming.  Woke up my husband, who – god bless him – tried to calm me by holding me tight.  Not a good idea.  It took at least a half hour for me to stop crying after finally being able to articulate that he needed to let go.  Crying partly about becoming combative with him in my confusion, partly from the remnants of rage and horror, and partly from the continuing physical pain which rapidly became very real when my too tight muscles and rigid tendons were locked in his arms.  We finally got up and came downstairs, smoked, and recovered.  I told him about the dream and I said I was really sorry for throwing elbows while he was trying to comfort me.  I explained that if I need to be held after  a dream like that (they happen about 2x a year, more during stressy periods or holidays and family birthdays), I will tell him.  He was deeply apologetic for holding me like that, he said he had only wanted to comfort me and stop me from getting hurt – which I really do get.  When someone who dislocates is thrashing violently (not to mention screaming like they are being stabbed), it makes sense to want to hold them.  I told my husband that it was a good thing my parents lived far enough away to be inconvenient for me to drive over there and just start slapping.  If someone’s going to get elbowed in the face because I continue to suffer the ill effects of a broken development, it should be them.

In the late morning of the 4th, my brother texted me that my uncle died the night before.  This is not a man I knew well.  This is the second husband of a once favorite aunt.  Favorite of us kids, not of me specifically – she is my brother’s godmother and while she and her first husband made us all very welcome in their home, they had a special bond with my little brother.  Went spent a lot of holidays with her and her first husband.  He was a kind man who, even after getting sick with liver cancer, would try to be as fun as he could for quite some time before the depression and physical illness robbed him of that.  They had been very much in love and he had died young and rather suddenly.  Lost weight, got jaundice, got diagnosed, died all in a few months.  It took my aunt a long time to recover some footing from this.  Finally, at quite a later point in life, she met a man who she adored.  They quickly married.  I met him with her at another uncle’s funeral in 2007.  She seemed so happy, despite the sad occasion, when she spoke of this man and looked at him.  I was happy for her. A few years later, he had a stroke.  Then another.  A pretty bad one.  The next time I met him, last year, he had significant aphasia.  He could speak but it was with significant effort.  I found out from little brother that a few months ago, he had deteriorated further, another stroke, and had been transferred to hospice/rehab.  Basically, it was rehab but the staff and my aunt knew that it was really just comfort measures and palliative care.

The practical upshot of this is that I will be seeing the family quite soon for the memorial services.  What a week to have to see them.

wide awake and a mountain of paperwork

This is a trick my body knows.  The “wake up 3 to 5 hours after you fall alseep” trick.  And I don’t mean a little tossing and turning, I mean wide the hell awake.  At 1, 2, 3, or 4 AM.    Drenched in sweat.

This week, we have a nasty weather system that’s been camped out just south of us in Northeast US.  It’s been stormy, warm, and muggy every day.  We had tornado warnings on Monday, and our neighboring state, the Olde New England Outback, had an actual legit tornado touch down.  This is Migraine Weather.  And here’s me, with my body doing this trick.  It’s practically begging for a migraine.

I have an appointment at BI-BATH and they sent me paperwork this week.  A mountain of paperwork.  It’s the size of a small phonebook.  Admittedly, some of it is directions for the tilt test prep (no food, you know in case you get all pukey with the syncope) but a very large amount of it is history and survey based.  Several questions ask about sleep and sweating.  One about poor handwriting.  I wrote “Yes!” with underlines, since this was about half way through the packet and my already shitty handwriting deteriorates the longer I write.  Now a word on that.  It’s become trendy again to bemoan poor penmanship and blame it on the internets, the computers, the mobile devices.  Let’s set the record straight.  Before there was a computer in every room, I typed at a typewriter, and not just papers but letters, and by the late 80s, journal entries.  It was just so much easier and so much more readable and so much less painful than writing.  My writing has ALWAYS been terrible.  When we met my mom’s birth mother’s family, with the various unbelievably tall aunts and their collections of sons, we found out that several of the sons were dyslexic…one with a pretty significant helping of dysgraphia.  Ah.  So there you are.  I got the latter, my sister got the former.  So I’m scribbling along on these forms and I’m like “wait, are my sleep problems all part of this autonomic bullshittery?  And my waking up drenched in sweat?  Why has no one mentioned this before?”  Then there were the “how long has this been going on” questions.  First time you passed out?  8 years old.  How old were you when your skin started changing color?  All my life.  How old when you started having greying vision and dizziness on standing?  As long as I can remember.  How long has it been difficult to stand for long periods?  Always.  Same with problems staying asleep, stopping breathing while sleeping, acting out dreams, intolerance to heat.  It’s just that over the last 10 years, it’s all gotten a lot worse on an accelerating time scale.  If this were a line graph, it would have started high for severity and slowly gone up through adolescence, wiggled around a bit in the 20s and early 30s, then shot up at about 34 with increasingly small plateaus.

What’s, in retrospect, rather mind boggling to me is that my family really didn’t seem to see the big problem with any of these things.  After I mentioned that I had passed out starting at 8 years old at school, at 9 at home, then again at 11 on a field trip, my primary care asked me “and what did the doctors say then?”  “Oh I didn’t see a doctor for that until I passed out in a hospital before a scope when I was 15, then they thought I had epilepsy because I pass out stiff.”  He did a face/palm move.  “Hey, I grew up in the 70s, you know?  People were like ‘oh that kid passed out, huh, kids….'” I said.

But seriously were they lazy?  Did Mom RN derive some pleasure from playing House MD to a kid with a mystery illness?  I knew the term “marfanoid habitus” at a very young age.  I can’t imagine she enjoyed hauling me around to various doctors for the GI stuff and then for the passing out everywhere stuff.  Scratch that, I know she didn’t.  But she knew these things weren’t ok, she’d remark on them….”Oh, look at that, livedo reticularis!” then she’d go on to explain the word meanings and their roots.

I go for my latest tilt test in two weeks.  In the meantime, I have a vacation starting tomorrow…off till July 11.  Woo!  Already got hubby to agree to go to the nail salon with me.  He really needs a manicure.  Just because my hands don’t work right doesn’t mean they can’t look good.  And I really need these toes to look less snaggly so I can bust out the open toe shoes for work now that it’s hotter than blazes here.  Taking suggestions for colors.  I went with a raspberry last time on my hands that I liked out of the bottle but that did NOT wear well.  It’s left me with a sort of candy apple hello kitty pink sheen that is just not me.

long lost people

Apologies for the long absence.  Tough times for me personally and up here in Big Northeastern City.  April is a cruel month.  I’ll post more about that later.

Last night, I got a call from a number I don’t know.  I recognized the area code as one from the woodsier part of Northeastern State but not the number.  Eh, that’s what voicemail’s for, I thought and let it go.

And then I got a text.  It was from one of my cousins and she mentioned that my mother (boo, hiss) had said she should call me about some medical stuff.  I had two sets of cousins for most of my childhood.  I say “most” because my mother was adopted and found her birthmother and a whole set of half sisters with kids when I was in my early teens.  So that opened up another bunch of cousins.  All boys, which was funny since the two sets I’d had up til then had been all girls.  Three girls who were my dad’s brother’s kids (although my dad came from a pretty large family, all my dad’s sisters had endometriosis back when that meant unaddressable infertility) and three girls who were my mother’s brother’s kids.  My mother and her brother were both adopted.  Remember that, it’s important.

The one who reached out to me was my uncle’s second child.  Another middle kid.  I have the following associations with her:

  • She was always very pretty, in a fairy-like way.  Gorgeous long blond hair on top of the delicate features she and her sister shared.  
  • Young.  Always so young.  All of our cousins were younger than my little brother, which meant that the eldest of the cousin sets was still my junior by some years.  The consequences of this are that although I felt an affinity for the middle daughters in both sets, there was a bit of a divide since in childhood social spheres, age does make a difference in peer relation. 
  • Peppy.  Not crazed with energy, but peppy.  
  • Easily injured.  It didn’t keep her down, but she did fall a lot.  

Seeing her text, I immediately called her back.  yeah, it was late and yeah I’m gonna pay for that today but I had been thinking of her and her family so much over the last few months.  I think it started around christmas time and has just been picking up steam.  Not a week has gone by where I don’t think of them.  We weren’t super close.  My parents were just kind of isolated and aloof so this meant we didn’t get really close with any extended family.  So I’m not sure why this branch of my tiny family tree was on my mind so much but it was.  And when I saw her text, I thought “ok if this doesn’t mean we need to connect, I don’t know what does.”  The first thing she said was that I sounded exactly the same.  It’s been almost 20 years since I last saw her, and that was at my first wedding.  I’d be surprised if I said more than a paragraph to her during that since I was stressed and running pillar to post and she was sick and down for the count some.

The next thing she said was “so I hear you’re a zebra too.”

What is up?  Health wise, I asked.  Turns out that my cousin has very likely got EDS, definitely has POTS, heavy on the “T”.  And endometriosis.  The list goes on but I don’t want to put all of her health info up here like it’s mine.  This is an anonymous blog but still, not my right.  Suffice it to say, we have a hell of a lot of overlap in clinical presentation.  Although she’s cold intolerant

I was staggered.  At one point, she said “I feel like I’m talking to myself.”  And I knew exactly what she meant.  “Are you sure weren’t not related by blood?”  Pretty sure.  But boy that is some strangeness.  “WTF was in the water?  Doesn’t it make you wonder if there was something in our environment?” I asked.  But it’s not like we spent a ton of time together or at each other’s houses.  We lived rather far apart too.  We were on city water, she was probably on well water given the rather rural town where her family lived.

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.

calling all gallbladders

Ok friends.  Several regular visitors to this blog have had gallbladder disease.  I need your input.  Tell me about your early symptoms.  I know that’s not always easy, since those of us with chronic health issues tend to blow off, minimize, or otherwise downplay (and ignore) new and subtle symptoms.  So if you can’t recall the super early stages, I understand.  I know what an attack of acute gallbladder pain looks like.  I’m not so sure about the grinding day to day of smoldering or building gallbladder disease.  And I’d like to because I’d like to know how hard to push on looking into this nausea and upper abdominal pain that is becoming a daily thing.

My ECBF (ex cohabitating boyfriend) had gallstones that got him all screwed up for a bit.  They presented themselves loudly shortly after a Halloween party one year.  We had eaten loads of nummy things that night, including stuffed mushrooms, which could quite accurately be described as mushroom coated fat balls (butter and I believe the stuffing had sausage in it).  He woke up in the middle of the night with horrible abdominal pain, power-puking several times, diaphoretic, and just plain ol’sick as a dog.  We thought maybe he had food poisoning at first, but the pain was so intense and a puking type 1 diabetic is a bad thing, so I took him to the ED.  Pancreatitis, said the labwork.  He was admitted to Ye Olde New England Outback Memorial Hospitale for a week while the Olde Timey Gastroenterologist did some tests, including a HIDA scan.  While the doc was competent enough to order it, he was not competent enough to interpret it.  The results were “within normal limits” and so the Olde Timey doc ruled out gallbladder and called it diabetic gastroparesis.  Big surprise, an MRI a month later confirmed that the ECBF had gallstones.  Reflecting on the months leading up to the pancreatitis, ECBF did have symptoms.  He’d feel sick, need to lay down, usually after he’d been over at the family’s house (eating bad things).  We only put that together after the fact.  And while ECBF certainly complained about his state in the interim, it was hard to get a sense of timing of symptoms since he was treating his gut and gallbladder so badly during that whole period.  He continued to eat food that seemed to trigger or worsen his symptoms – often at the urging of his evil family.  It was like watching an afterschool special, where the schoolyard “bad kids” were his parents and uncles and instead of trying to get him to smoke a cigarette, they were trying to get him to eat bacon cheeseburgers and wash them down with a few shots of whiskey.  Basically, they were a family with a family-wide eating disorder on top of family-wide alcoholism.  DEEEEElightful people.  So against that backdrop, it was hard to tell what the bare bones symptoms of ECBF’s gallbladder ailment were.  You know?  I mean, it’s like you have a rash on your arm that has some nice specific characteristics, but then you take flame thrower to it and then you go to the dermatologist and say “hey what’s causing this rash on my arm?”

So I’m asking you.  I know at least two of you have had gallbladder disease, Mo and Ana…and probably others, forgive me if I’ve forgotten.  If you don’t mind, let me know what it feels like in a person who is not filling their guts full of badness.  What’s it like when you’re doing the best you can to take care of yourself but still have this happening anyhow.  For me, whatever is going on, it’s daily nausea that reaches crazy levels and that somewhat strangely seems relieved by eating.  It comes back/starts up again within about an hour of eating, building up to the crazy bad again.  The pain is sharp and very much in the upper abdomen, so upper that it feels like I should call it my “lower chest”.  I suppose it’s properly “epigastric”.